160693 choices book 2017 for issuu

Children & Hearing Loss:

Children & Heari A Resource Notebook for Illinois Families Loss: A Resourc dren & Hearing 4th Edition

HEARING LOSS IS A JOURNEY I NEVER PLANNED FOR, BUT I SURE DO LOVE MY TOUR GUIDE! ~Author Unknown

Table of Contents

Children & Hearing Loss A Resource Notebook for Illinois Families TABLE OF CONTENTS Introduction Introduction .………………………………………………… . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Stories 10 Storiesfrom fromParents Parents .………………………………………... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Facts 31 FactsAbout AboutHearing HearingLevels Levels .………………………………... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 About 55 AboutCommunication Communication……………………………………... . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 55 Hearing Technologies ………………………………………

75

Hearing Assistive Technology ……………………………...

89

Role of the Pediatrician ……………………………………..

98

Deaf Culture …………………………………………….......

107

Early Intervention ..…………………………………………

121

Educational Options ……………………………………...….

134

Resources—Local, State, and Federal ………………………

156

All About Me ………………………………………………..

184

Acknowledgements & Forms ……………………………….

195

Glossary ……………………………………………………..

202

Hearing Technologies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 75 Hearing Assistive Technology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 89 Role of the Pediatrician . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97

Deaf Culture . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105 Early Intervention . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 119 Educational Options . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131 Resources—Local, State, and Federal . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 153 All About Me . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 181 Acknowledgements & Forms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 201

CHOICES for Parents P.O. Box 646 Highland Park, Illinois, 60035 Phone: 312-523-6400 (voice or text) or 866-733-8729 Fax: 312-277-0997 Email: info@choicesforparents.org Website: www.choicesforparents.org Coordinator: Karla Giese CHOICES for Parents is a statewide coalition of parents and professionals ensuring that children with identified hearing loss and their families receive the necessary resources, advocacy, information, services, and support.

CHOICES for Parents is committed to providing unbiased information.

CHOICES for Parents Founding Coalition Members include: HITEC CHS, a division of Anixter Center Catholic Office of the Deaf Mendac AEHI Ann & Robert H. Lurie Children’s Hospital of Chicago

For more information in English or Spanish, please contact CHOICES for Parents.

Children & Hearing Loss ~ Fourth Edition 2017 Compiled by Karen Aguilar, Edited by Karla Giese Special Thanks to all Coalition members who contributed to this Notebook!

CHOICES for Parents Current Coalition Members include: • Advanced Bionics • Alexander Graham Bell Montessori School-AEHI • Ann & Robert H. Lurie Children’s Hospital of Chicago • Auditory Verbal Center of Wheaton • Creating ASL Resources to Enhance Relationships (C.A.R.T.E.R.) • Catholic Office of the Deaf • Chicago Hearing Society, a division of Anixter Center • Chicago Park District • Chicago Public Schools • Child’s Voice • Children of Peace Deaf/HH Program • Cochlear Americas • Communication Clubhouse • Daniel Roche, DTH • Foundation for Hearing and Speech Rehabilitation • Gallaudet University Regional Center-Midwest • HITEC • Illinois Association of the Deaf • Illinois Deaf Latino Association • Illinois Early Hearing Detection and Intervention Program

Table of Contents

• Illinois Hands and Voices Guide By Your Side • Illinois School for the Deaf Outreach • Illinois Service Resource Center • Illinois State University/AIM to Be Ahead • Jane Dwyer, DTH • Kinzie Elementary School D/HH Program • Kristen Schraml-Block, DTH • MED-EL • North Shore University Health System • Northwestern University, School of Communication • Rush University Department of Communication Disorders & Sciences • SIU School of Medicine Pediatric Hearing & Language Program • Sertoma Speech & Hearing Center • Sinai Deaf Health – Mount Sinai Hospital • Sound Health and Healing • University of Chicago Pediatric Hearing Loss Program • University of Illinois - Chicago

Choices…Options…Possibilities…Opportunities…

When you discover your child has a hearing loss (deaf, hard of hearing, or deafblind), you are instantly faced with questions, concerns, and uncertainty. There is a whole new world to navigate, new information to learn, and decisions to make about amplification, communication, therapies, providers, educators…the journey can feel overwhelming!

This Resource Notebook was made with you in mind.

You will find stories from other parents who have walked in your shoes, information about hearing loss, technology, ways of communicating with your child, early intervention, educational options, and additional resources so that you can easily explore and learn more about various opportunities for you, your family, and your child.

Take your time reading through this notebook.

Make decisions when you feel ready and ask questions to seek more information and support. Come back to this notebook as often as you need and know that this is a journey where nothing is set in stone. Information and knowledge are powerful. New information may open new possibilities which may change your original plan and that is ok!

In the meantime, take care not to let your child’s hearing loss overtake your life and your interactions with your child and family. Hearing loss does not change your child’s basic need for holding, rocking, playing, loving, and being a child. Your child will grow and develop within the context of your family, so keep your family’s interests and needs in mind. Take care of yourself so that you can take care of your family. Remember, asking for help is a sign of strength!

As a deaf adult, I encourage you to seek out other families, as well as other children and adults with hearing loss. Consider asking for a deaf mentor, a person who can be a positive role model of life as a deaf adult. Arm yourself with information about all the choices, options, possibilities, and opportunities available to your child, even if you do not think you will take advantage of them. Find a trusted individual you can lean on as needed.

Consider all aspects of your child’s life: home, school, daycare, family, therapy, medical…and consider all the relationships that will develop. Ensure your child has access to communication and the self-confidence to shine. Above all, allow your child to be a child. The possibilities for the future are endless…your child can be anything he or she strives to be!

As a deaf adult well versed in spoken language, Sign Language, and Cued Speech, here are some additional thoughts of my own that I want to share...

• • • • • • • • •

Always believe in me and support me…

Look at and consider ALL opportunities for me…

Help me meet other people like me…

Be my advocate and then teach me to become my own advocate…

Remember my development as a whole child, not just my hearing…

Get to know me, learn what I can do, and figure out where I need support…

Keep me involved with the whole family…

Take time for yourself too, and remember that my hearing loss is not your whole world…

Talk to me about your dreams and wishes for me and listen to me about my dreams and wishes for the future…

Table of Contents

In addition to the support that we provide to parents, CHOICES for Parents sponsors the following programs: ✓ READ Program: Our book distribution program where we collaborate with the American Library Association, Hall-Erikson, and GES Exposition Services to distribute books throughout the state of Illinois to programs and schools with deaf, hard of hearing, and deafblind children to promote early literacy. ✓ READ Kits: Reading Kits are available for parents and caregivers to borrow so they can foster a love of books early! Each Kit includes books, materials, and suggested activities to do while reading the books with your child. Videos are available on our website explaining various reading strategies to use while reading with your child, regardless of communication mode. ✓ EHDI Day: A day proclaimed by the Governor of Illinois where we honor those who have gone above and beyond in early identification and/or intervention of infants and toddlers who are deaf, hard of hearing, or deafblind. ✓ Sign Language Classes and Informational Webinars: We provide sign language classes to families of children who are deaf, hard of hearing, or deafblind as well as informational webinars related to a variety of topics related to hearing loss. ✓ Outreach to the Latino Community: Through collaboration with the Illinois Deaf Latino Association, we provide Sign Language classes taught in spoken Spanish for families with children who are deaf, hard of hearing, or deafblind children as well as information and support in Spanish. ✓ Resources, Advocacy, Information, Services, and Support: Contact us and we will answer your questions, refer you to additional resources, provide advocacy, and arm you with the tools necessary to address your current situation, all in an unbiased manner.

Please contact CHOICES for Parents at any time throughout your journey with your child. more information at www.choicesforparents.org.

I wish you a wonderful, loving journey with your child!

Karla Giese, Coordinator CHOICES for Parents choicesforparents@gmail.com

Table of Contents

See our website for

We’re Here for You! Parent Support Organizations in Illinois In Illinois, we offer several options for support for families. Parent-to-parent support allows families to learn, process and act on information and resources in a comfortable and supportive environment. In addition, the guidance and friendship of another parent who has experienced similar emotions, events and responsibilities often allow families to feel more at ease with an understanding that everything is going to be okay.

Illinois Hands & Voices and Guide By Your Side is a parent-driven, non-profit, unbiased organization focused on providing support and resources for families with children who are deaf or hard of hearing. Illinois Hands and Voices offers support to families on a larger scale by hosting family and educational events and by offering up-to-date information through their Website and listserv. Guide By Your Side works one-on-one with families matching a trained Parent Guide with each family. The Parent Guides then meet with the families to discuss concerns, needs, and the personal journey of raising a child with a hearing loss.

As parents of deaf children ourselves, we cannot express enough the value and importance of being able to connect with other families going through similar experiences. Knowing there were other families out there and learning from their experiences and knowledge was incredibly valuable. It can be a very confusing maze of information for newly-diagnosed families. These programs can help show them all their options and guide them to resources that are available. In addition, these two parent support systems help create bridges in our state to connect families with valuable resources, educational workshops and family-friendly events.

We invite you to contact us and learn more about these free programs for families and what is available to you throughout the state.

Sincerely,

Andrea Marwah

Carrie Balian

Chairperson

Program Coordinator

Illinois Hands and Voices

Illinois Guide By Your Side

ilhandsandvoices@gmail.com

ilhvgbys@gmail.com

Call Toll free: (866) 655-4588 Text (224) 343-1873 Table of Contents

www.ilhandsandvoices.org

What Now? Understanding Childhood Deafness Reprinted with permission from Sue Schwartz, Ph.D. Choices in Deafness It is 6:10 a.m. on Tuesday. It has been 24 hours since your beautiful baby girl was born. You are in love. There's a knock on your door and you happily shout, "Come in!" You are full of hopes, dreams and aspirations. Your visitor will change that. He says, "I have the results of your baby's newborn screening test. I am sorry to tell you that she has failed her newborn hearing screening." You ask, "What? Say that again." You listen and you think, "This can't be happening. It's early in the morning. Maybe I'm not awake yet." The technician waits. He knows you will have questions. And the questions start to come. How? What does it mean? What's the first step?

Where do I go? What do I do now?

One parent said upon hearing the diagnosis of a profound hearing loss in her son, “Well if he is going to be deaf, he is going to be the best deaf person around.” That is the positive attitude you must take. Although this is a road you did not plan on embarking, your baby has been born into a century where hopes, dreams and aspirations are not crushed at the thought of a hearing loss. Your child had the opportunity to have newborn hearing screening, which is mandated in 38 states and voluntary in 5 others. She will have the benefit of the latest technology in hearing aids, cochlear implants and teaching methods. You will benefit from meeting a whole group of people you never knew existed and you will move ahead to the next step. Parents before you have attested to this. Many of these parents have gone on to become educators in this field or become officers of organizations for the deaf.

Your pediatrician will guide you. She will tell you which audiological center to contact for further testing and follow-up. Your baby will have repeated audiological tests to make sure that the first diagnosis is confirmed.

Your audiologist will help you through this phase. What can you do? You can face your fears head on.

Discuss them with your spouse, family, and your friends. Some parents in your situation do not tell their own parents at first. This is not a good idea because you will need their support and they will want to be a part of your search for answers. Ask for support. People love to give you all that they can and you will not feel alone.

Ask your audiologist about organizations you can contact. Are there adults with hearing loss in the community that you can talk to? Is there an infant toddler program you can enroll in?

What can I do?

•

Face your fears head on

•

Ask for support from your family and friends

•

Inform yourself

•

Inform all of your children

•

Join an organization that supports your option for hearing loss

•

Take time for yourself

Look carefully inside yourself. What kind of person are you? Do you seek out information? Do you try to discover all that you can about something new? You will be very busy with your new baby and your other children at home, but you must move forward and learn all you can about this new challenge that faces you and Table of Contents

your family. Enlist your spouse for help. Have him or her go with you to all of your baby’s appointments. You will want your spouse’s support and he or she will be happy to be in this together with you.

After you have gathered information and learned all your resources, it will be time to share this information with your parents and family members. You must ask for their support and you will be able to share all the new information that you have gathered. Information is power and you will feel empowered as you share this news.

What about your other children? How do you tell your baby’s older brothers or sisters? He or she may be fairly young, so you can keep your explanation brief, “Our new baby has a hearing loss. She cannot hear as well as you and we will have to help her listen with new hearing aids. Can you help me with that?”

Your other children will have some issues of their own to deal with. First, he or she has a brand new sister and no matter how well you prepared them for this, it is a difficult transition for them. They will not have your total attention. And now you have to add many appointments to that schedule. Try, with the support of family and friends, to give your other children as much individual time as you can manage in a day or week. Ask a friend to watch your new baby while you take them to your favorite park and play together. Then arrange a play date for your other children while you take your baby to some of her appointments. This is not an easy task to accomplish, but you want to have the best outcome for all of your children. Be sure to explain each step of the way as events occur. “Look, James, Katie has new hearing aids. They will help her hear better.” Invite them to listen with the hearing aids and he or she will be surprised at the power they have. They will be curious so it is best to let them experiment with you in control rather than have them decide on his or her own to investigate these aids.

What can you do for yourself? You have asked your family and friends for support. You have your spouse’s involvement. You have helped your children to understand what is going on. What about YOU? It is very important that you take time for yourself during this time as well. Because you have been honest and straightforward with your family and friends, they will be available for you when you need them. Schedule some time for yourself without your children. Leave them with family or friends and take yourself out for coffee and some time alone. Perhaps you have picked up a book about childhood deafness and want some time alone to read. Go to a park or library and indulge yourself for an hour or two.

Beginning to understand the impact of childhood deafness is a challenging task for anyone. You will have many things to do and to read. You must be kind to yourself and allow yourself the opportunity to feel sad, to feel overwhelmed and to fee confused. These are all normal and natural things to feel at this time. Opening yourself to exploration of new people who are in the field of deafness, adults with hearing loss, and other children, who are deaf or hard of hearing, will give you a feeling of empowerment. Be sure to join a local parent group. There are several organizations that can help you find a group that you will be comfortable in.

Remember that knowledge is power and power is empowerment for you and your family. This is a new challenge for you, but you can do it!!

**A free copy of this book can be obtained from Alexander Graham Bell Montessori School-AEHI. Please contact them at info@agbms.org and request a copy of Choices in Deafness by Sue Schwartz. An order form can be found at the back of this Notebook. ** Table of Contents

Table of Contents

Stories from Parents

Stories from Parents

“I am a mother to two beautiful daughters.”

“I am close to God.” “I am a research assistant.”

“I am Deaf.” ~Susan Elizabeth

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

10

Dear Parent/Family Member, As a mom to three deaf and hard of hearing children, I know firsthand the difficulties and triumphs of raising deaf and hard of hearing kids. As an adult with a profound hearing loss, I’ve experienced the impact of hearing loss in everyday life and how it has shaped the direction of my life. As with anything in life, there are days of hardship and days of joy.

I encourage you to experience the journey of raising a deaf or hard of hearing child with other parents as well as deaf or hard of hearing adults. Rest assured that you are not alone and that you have many options for your family. As one mom of a hard of hearing daughter has often quoted, “Nothing is set in stone.” As your child grows, you can evaluate the choices out there and plan accordingly.

When my children were diagnosed, I Photo provided courtesy of Cochlear Americas ©2009 Cochlear Americas often found myself dealing with different agencies and a variety of services. There was no one single source of information to guide me.

We hope that this notebook can provide you with the resources and guidance to eliminate the wondering of, “What services are out there and how do I obtain them?”

This notebook is a collaborative effort by parents, deaf, hard of hearing, and deafblind adults and professionals serving deaf, hard of hearing, and deafblind persons. I hope that you find the information useful and helpful.

Wishing you a beautiful journey with your child.

Karen Putz Mother of David, Lauren, and Steven

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 11 Children & Hearing Loss: A Resource Notebook for Illinois Families

11

Judith & Allan Rosenblum Parents of Howard Our son lost his hearing at the age of two years, ten months as a result of viral meningitis. It was a devastating experience. He had been speaking when he became ill, but lost his verbal ability, as he was unable to hear language. At that time, sign language was not generally accepted as the best way for Deaf children to be educated. We heard often “they will have to function in a hearing world” therefore they must learn to read lips and speak. So we followed that program for about two years, but our son was frustrated over an inability to communicate.

There were a few parents, one in particular, who were adamant and determined that sign language was the right way for deaf children to be educated. As a family, we began to take classes from volunteers who gathered groups of parents together to study. Our son was about 5 years old at the time. At around the same time, we were fortunate to find an extremely good speech therapist, who was quite successful in developing our son’s oral skills.

At about the same time, a young Rabbi came to Chicago to work with the Jewish Deaf. We became members of that congregation and are still active there. We began to meet more Deaf adults, which gave us a perspective of their lives, jobs, families, etc. that we never had before.

We realized our child could and would be able to lead a productive, happy life.

Our son had an exceptional peer group and we worked closely with the other parents to assure they were all getting the best education possible. In fact, several teachers realized how important sign language was to these children and learned it on their own and began using it in the classroom, even though it was not “official.” We felt it was crucial that the teachers challenged the students and had high expectations of them.

It certainly has not been a completely smooth road and there were many rough spots to work our way through, just as there are with any child. Our advice would be to remain open to every form of communication, whatever works best for your child is what is best for your child. The most important thing is to be able to communicate whatever way you can accomplish it. Work with the teachers and the school to be sure they are doing everything necessary to adequately serve your child and to help them reach their full potential. Make every effort to have them involved with a peer group of deaf and hearing children and participate in activities outside of the classroom. Our son was involved in wrestling starting in seventh grade all the way through high school and it was an excellent way for him to be involved with a variety of other students and be accepted for who he was as an individual.

When we realized our son had lost his hearing, we did not know what to do. We had no experience with deafness. It was a scary time for us. Our son is now a successful attorney and was just hired as the new CEO of the National Association of the Deaf. He leads a happy, productive life.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 12 Children & Hearing Loss: A Resource Notebook for Illinois Families

12

Jenny Knapp Mother of Taylor Taylor James Knapp was born on May 12, 1995. He was 9.9 on the Apgar scale and a sturdy 8 lbs., 1 oz. baby boy.

He joined us one day before Mother’s Day…what a perfect gift!

When Taylor was about 19 months old, his speech had diminished. He started calling me “bomb” instead of Mom. We think he was lip reading for survival. He was down to two words, Dada and Bomb. His babysitter, Mary, told me she was concerned about his hearing.

We took him to his pediatrician in February. The pediatrician looked in his ears and said he was fine. He told me he was just a busy boy. I asked him if there was a test for hearing and he said no because Taylor was too young. Little did that “well baby” doctor know I wanted to believe him. Taylor’s pediatrician at that time had no information or resources about deafness. Also, because Taylor was not tested, we lost valuable time, which is critical to a child with hearing loss.

In June, we bypassed the pediatrician and had him tested by an audiologist. He discovered that Taylor was profoundly deaf. The next step was an auditory brainstem response test (ABR), which confirmed the diagnosis that Taylor had a sensorineural hearing loss. His hearing tests revealed he was at 90 dB, which is a profound hearing loss, meaning he had virtually no hearing at all. To rule out any physical problems, Taylor had an MRI, which showed no problems.

The emotion of finding out my child was deaf varied. At first, I was shocked and sad. I remember thinking, “he will never go to prom,” which I now know is absurd! It is very interesting how Taylor’s hearing loss felt like a physical loss to me. I wanted to give him my hearing so badly. My father gave me the book, When Bad Things Happen to Good People, by Harold Kushner, which helped put a lot of my feelings in perspective.

Then the guilt set in. How many times had I called his name and thought he was ignoring me or being defiant? The guilt led to spoiling Taylor. His attention span was very short and he did not know how to play by himself so I bought many things to entertain him.

We were extremely fortunate because when my parents found out, they told me they had a college friend who was a prominent ear surgeon. The ear surgeon told my parents about the cochlear implant and how Taylor would lead a life amongst the hearing world. He could have all of the opportunities in life that we wanted him to have. He would be able to talk and hear, but the most important thing to me was that he would hear my voice telling him how much I loved him.

The ear surgeon told us that the cochlear implant was the best device. Our decision was made.

We had our first interview with a doctor. She advised us that Taylor would use hearing aids for 6 months before the surgery. We were lucky that we got loaner hearing aids because we knew they would not provide adequate sound.

Unfortunately, other parents get talked into purchasing hearing aids even when they are only temporary. Since Taylor is profoundly deaf, hearing aids just gave him a few very low-frequency sounds. We needed the aids to keep his brain aware of what to do with sound.

The hearing aid segment of my life brings to mind major frustrations. I think Taylor sensed my fears and anguish and we had a hard time with his cooperation. It was almost as if he was testing my reactions to his insubordination.

I know how critical it is to keep the brain informed of sound so I tried to keep calm while I chased after the aids that had been thrown across the room. This 6-month period was very hard for me. I was still torturing myself about his deafness. We have no deafness in our families. I tried to act tough but I cried all the time, which before this time

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 13 Children & Hearing Loss: A Resource Notebook for Illinois Families

13

was not a part of my personality. Unintentionally, I was letting my depression, fear, and anxiety dominate my life. I took the blame for his deafness on myself, which I now know is irrational. It took me a long time to let this go.

Our family life was just like the movie, Mr. Holland’s Opus. Taylor was screaming because I couldn’t understand him, which led to my husband screaming at me, which in turn led me to scream out of frustration. The worst part about the communication breakdown was that we didn’t know if Taylor wanted an apple or candy. There was no way to know if it was a reasonable request or not.

We started our therapies next. Taylor attended a program three days a week to learn oral and sign language. He also went to a fabulous auditory verbal therapist once a week. The reason we started with sign language was because we had no way to communicate with our 2-year-old son. He had a minimum of five horrible temper tantrums per day.

We needed a way to communicate in order to alleviate our frustrations. I also taught Taylor some basic sign language so that he could express what he was feeling emotionally.

Taylor’s surgery was performed two days after Christmas when he was 2 1/2 years old. Once again I received the second greatest gift at this time in my life. Taylor’s surgery was very frightening for us.

After surgery, he was sick to his stomach and dizzy. His head was shaved where the internal device was implanted and he had staples over the incision. It looked bad, but 24 hours later he was running and playing. We were amazed at his recovery.

One month later was Taylor’s first mapping. We were soon to find out that the cochlear implant would benefit him.

His first mapping was quite uneventful. We were all sure he was hearing because of the look on his face - he was neither surprised nor fearful, but had a slight startled response. I did notice over the next year of mapping that he was definitely benefiting from the implant. It was a slow and steady process.

During that year another fortunate thing happened for us. We were told about an oral school for deaf children.

Taylor was 3 years old when he started going to the school. The tuition and transportation costs were paid by the local school district. He attended classes from 8:30 a.m. to 3:30 p.m. for three years. The faculty is amazing. My quiet, frustrated little boy was talking by the end of the first year! Taylor needed extensive vocabulary work, which the school successfully accomplished. The cochlear implant gave Taylor his wings and the school taught him how to fly.

Taylor graduated from school when he was 6 years old. He was mainstreamed into our local school district in the first grade. Because the local school district paid for his tuition for three years, he would no longer need 13 years of special education classes, which would have been far more costly for the school system. He had a private speech therapist for two years. He is now in the 3rd grade and only uses the district’s speech teacher and the services of our deaf itinerant worker who works with him three days a week for 20 minutes.

Taylor is just like any other 8-year-old boy. He loves Tae Kwon Do, golf, swimming, and pitching for his baseball team. He does well in school and was elected to student council. A lot of people do not realize he is deaf. He has been wearing the behind the ear speech processor, which blends in with his hair.

It was a long journey, and it took a lot of therapy and patience but I was determined to allow Taylor to join the hearing world. I wanted him to be able to meet and talk with every person put in his path. I did not want him to feel segregated and alone amongst his hearing family. He is a confident, happy little boy. He will be able to have any job he decides upon. Every day of my life I am thankful for the miracles created for my son because now I can hear Taylor’s voice say “I love you.”

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 14 Children & Hearing Loss: A Resource Notebook for Illinois Families

14

Carey Schmerman Mother of Heather When Heather was first diagnosed at around two years, I felt tremendously overwhelmed. It was as if I was dealing with an alien and trying to speak in a manner that I had no understanding. I realized that from the ages of birth to 3 years old, language foundation is established and I recognized the need to give her as much input and opportunities that I could possibly find. I had no one in my immediate world to seek help from. My family felt that it was Heather’s responsibility and mine to teach Heather how to speak and to lipread. Teaching sign language to my family was not a viable option. My husband never really became adept at the language, so I needed to be her bridge to the hearing and deaf world.

She was like a sponge and literally soaked up sign language 10 times faster and with much more ease than I could, but we really learned from each other. In the beginning, Heather’s level of frustration was so monumental that she would resort to tantrums. I felt like a modern day Anne Sullivan.

I can honestly say that the most rewarding part of all that I have gone through and still continue to go through is the fact that I am blessed with two wonderful gifts…my daughters.

My younger daughter, Heather, is undaunting in her pursuit of life. She is now a college student and still uses American Sign Language to communicate. Through both of them, I have learned more about life than any book could teach me.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 15 Children & Hearing Loss: A Resource Notebook for Illinois Families

15

Jaclyn & Steve Urbanski Parents of Ethan Ever since we learned that our 9-month-old son, Ethan, was diagnosed with a hearing loss, we have done everything possible to educate ourselves about raising a child with a hearing loss. This was new to all of us since we did not know anyone who was deaf.

Our first reaction was to teach Ethan sign language since we thought that all deaf people signed. We could not have been further from the truth. Through a lot of hard work, research and dedication, we learned that deaf children could learn to listen and speak. We had a wonderful opportunity to attend a 3-week seminar at the John Tracy Clinic in Los Angeles to learn about oral education. We learned that if a child is to acquire spoken language, he must learn it by the age of 5. We knew this was the path we must take for Ethan if he was ever to learn how to speak.

Our goal, along with the support of our doctors, therapist, family, and friends, was to educate Ethan orally.

Since Ethan’s hearing loss was in the severe to profound range, we knew this would not be easy. Since we had this tremendous goal for our 2-year-old son, we knew we must ensure that he had the proper support and the most appropriate education to allow him to be successful.

Through a close working relationship with our school district and after careful consideration of all our options, we all knew that Ethan must attend an oral school in order to reach his goals. There simply was no other program in our area that came close to providing the necessary oral instruction. We all knew this decision would profoundly impact Ethan for his entire life.

By the time Ethan was 5 years old, he had been attending school for almost 3 years. As if by a miracle, Ethan was well on his way to reaching the goals that we had placed in front of our small boy. He was one of only four children in his classroom and received an equivalent of 300 minutes of speech and language therapy each day.

At Ethan's annual IEP meetings, the school district expressed how pleased they were with the tremendous progress Ethan had made in his education.

It was truly wonderful to see Ethan so happy. He could play with all of his neighbor friends. He could talk with them. He understood them and they understood him. He went to the restaurant, Chuck E Cheese, for his friend’s birthday party. He went on his own. Ethan was so proud that he did not need me to come along to interpret for him!

Ethan graduated the oral school in May 2004 and was mainstreamed into our home school district for 1st grade.

Ethan kept telling us how he couldn’t wait to ride the school bus with his older sister. We are convinced that the only reason that Ethan was able to complete the intense oral school program in only 3 years was due to the teachers at the school who were professionally trained in deaf and oral education and who were dedicated to teaching children to listen and speak. We told his teachers many times that what they were doing for Ethan then would help him become a successful person in the future. They helped build a firm foundation for him that profoundly altered his life to come.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 16 Children & Hearing Loss: A Resource Notebook for Illinois Families

16

2010 UPDATE Ethan is now almost 12 years old and is in the 6th grade. He has been very successful in his home school district, excelling academically with a 3.86 GPA this school year. He receives minimal Hearing Itinerant services and Speech therapy each week. He has close friends at school and in our neighborhood that he enjoys hanging out with. Ethan is a great Lacrosse player and enjoys many sports. He is also involved in Boy Scouts and has achieved the rank of 1st Class. In his free time, he likes to go to movies, play Wii, listen to his i-Pod, practice target shooting with his air soft guns, and rides his skateboard.

We are very fortunate to have Ethan as our son. It has been difficult at times raising a child with hearing loss, but we have enjoyed the journey!

2014 UPDATE, by Ethan I am now 16 years old and a Junior in high school.

I finished up my middle school years with many great opportunities. During that time, I wanted to be involved in the planning of my future and goals, so I always attended my IEP meetings.

I had the opportunity to attend a wonderful camp for kids with cochlear implants in Maine and was also honored at the IL Junior Academy of Science for my science project. I went on to present my project at the National Science Fair for Deaf and Hard of Hearing Students held at Rochester Institute of Technology. I received 1st place in my division.

As I was preparing for high school, I became a candidate for a 2nd cochlear implant and received it in April 2012. I knew high school would bring on additional challenges and I wanted every opportunity to hear the best I could.

High school was a new and fun experience for me. I became involved on the school’s cross country team and the lacrosse team. I also take pride in my academics. I no longer qualified for speech services, but I was enrolled in a tutorial class my 1st two years, which allowed me extra 1 on 1 help in a small classroom setting.

This year, I no longer require the extra help. I continue to meet with my hearing itinerant teacher, once a week to work on goals, as I prepare for college. I also started to use the Phonak Roger Pen (FM system). I enjoy and participate in volunteer work in and outside of school.

To satisfy my sense of adventure, I had the opportunity to attend Aspen Winter Camp for the Deaf and Hard of Hearing in Colorado. I also had an excellent opportunity to attend LOFT (Leadership Opportunities for Teens) this summer in Orlando at the AG Bell National Conference. I’m enjoying a bit more freedom since receiving my driver’s license on my 16th birthday. I also have the opportunity to present and attend events with other families who have children with a hearing loss.

I’m having fun during my high school years, but I’m also looking toward the future and planning for college.

My goals are to continue to exceed in my school work and I’ll soon be applying to “Big 10” colleges to attend business school.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 17 Children & Hearing Loss: A Resource Notebook for Illinois Families

17

Lydia Hernandez Mother of Lynette My name is Lydia Hernandez. I am married to my wonderful husband Wilson and we have three beautiful girls, Angela-12, Lynette-8, and Isabella-4. Lynette was a very happy child for the most part until we attempted to take her out to any social gatherings, parties, or restaurants.

She would get very irritable, grouchy and throw many tantrums. We were not used to this because our first born really didn’t care where we took her. She was pretty laid back. We figured it was simply Lynette’s way of letting us know, these are grown up places and I don’t like it. We tried numerous times. We even went out to eat during less busy times in hopes of her enjoying it. We had no luck. It would always be the same outcome, either my husband or I would have to stay and eat with Angie and the other would have to step out and wait in the car with Lynette. This went on for the first three years of Lynette’s life. We simply gave up.

Lynette started preschool in September 2009. Every day was a battle. She refused to stay and cried every morning through the last week of school. Around December of that year, the school administered a hearing test. We received a notice stating that Lynette failed the test. I thought maybe she was not focused and thought nothing of it. I still, however, immediately scheduled a follow-up appointment with an audiologist. I vividly remember walking from my car to the doctor’s office on a bitterly cold January day, with Lynette and my then 1-month old infant.

Lynette took another test and all I can remember after that is “Sorry, your child has profound unilateral sensorineural hearing loss. She cannot hear at all from her right ear.” Truly, all I heard were the words “hearing loss” and that’s all that mattered to me. I asked if hearing aids could help and the answer was no. I asked if there was a surgery or anything at all…what can we do?! Nothing. I was in complete denial. My husband and I went to get a second opinion and a third. We asked the same questions and received the same answers and results as the initial diagnosis. My parents were Mexican immigrants. My first language was Spanish. I had many health issues growing up and because of the language barrier, my parents were unable to easily ask questions. I, on the other hand, asked any and every question imaginable. I felt lost, alone, afraid, angry, sad, you name it. Why Lynette? How did I not notice? There was no family history of any type of hearing loss. It all began to make sense…she gets headaches from not being able to localize sound. If places are too noisy all she hears are muffled sounds. No wonder the loud and noisy gatherings never quite worked out, especially as a toddler! By asking questions, we understood unilateral hearing loss a lot more. By our third consultation, we were asked if we were interested in a program called Guide by Your Side. I felt I needed to speak with someone that understood what I was going through and meet others that shared my thoughts, my emotions, and my sleepless nights. Guide By Your Side put me at ease. Lynette and my family were not alone. She would be okay. However, in her lifetime she has come across other health issues. Since then, she has been diagnosed with Celiac Disease and a rare Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 18 Children & Hearing Loss: A Resource Notebook for Illinois Families

18

auto inflammatory genetic disease called TRAPS (Tumor Necrosis Factor Receptor-Associated Periodic Syndrome). Both are under control.

We have been very fortunate with Lynette; she has not required any types of itinerant services.

She was able to keep up and excel in school. Last year, in second grade she began experiencing difficulties and we found it necessary to put an FM System into place. The first day she came home after using it she stated, “It’s like I don’t have any hearing loss at all!” Needless to say, her grades almost immediately improved. She used the FM System all of last year and will continue to use it this year. This month, she will also begin using a CROS hearing aid. She is very excited and we look forward to this new experience and journey in her life. Our lives revolve around audiograms, doctor visits, school meetings, research of our own and at times struggles. However, we know we are doing all that we can to make her life as easy as possible and help her transition into becoming an independent young girl and we are confident that it will happen because we love our daughter and are making decisions and choices that have worked for her and our family. It may not always be the choice one expects to make, but if it works for your child, then we (my family) are all for it. We can only hope for a bigger, better and brighter future for Lynette. Thanks to my supportive husband, my two other daughters, wonderful family, friends, professionals, and support systems like Guide By Your Side, Lynette’s future looks extremely promising.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 19 Children & Hearing Loss: A Resource Notebook for Illinois Families

19

Sandy Mosetick Mother of Rachel When Rachel was born in May of 1990, there was no policy regarding “newborn hearing screening” and her deafness went undiagnosed until she was 12 months old. The signs that there was a problem began to become more and more obvious as Rachel reached 8, 9, 10, and 11 months of age: she didn’t usually turn to her name (when she did, it was probably because she felt someone coming, rather than heard someone), she made very loud, screeching noises instead of babbling or trying to say any real words, and the one that really drove it home to me—she didn’t seem to know I had come into her bedroom in the morning or after a nap until I went around her crib and got into her line of sight. She was finally given an ABR (auditory brainstem response) test and was diagnosed with severe-to-profound bilateral sensorineural hearing loss.

My husband and I were shocked, to say the least, as there had been no other deafness in either of our families. We didn’t know what to do, but quickly found that our pediatrician was not “in charge”—we were. We were told to do four things by the audiologist that diagnosed Rachel: 1) get hearing aids for her immediately; 2) join the A. G. Bell Association for the Deaf to get valuable free information; 3) sign up with the John Tracy Clinic for free lessons-by-mail on how to work at home to help our deaf child; and, 4) contact our local public school special education cooperative and register for their parent-infant education program.

I met a mother who told me about Cued Speech. It was easy to learn—would take me only 1020 hours to learn the whole system. It consisted of a system of 8 handshapes that represent consonant sounds and 4 vowel locations. You would cue consonant-vowel syllables while you spoke, giving your deaf child 100% visual access to every phoneme (sound) in the English language (or any spoken language). She told me that children who used Cued Speech achieved language and literacy levels equal to or better than their hearing peers. My husband and I both immediately began Cueing with Rachel at home. She was age 18 months and had no verbal language.

Rachel made remarkable language gains with Cued Speech. She was age appropriate by age 28 months. By age 5, she was reading 2nd grade level books. By 2nd grade, she was reading at 5th grade level—and by 5th grade she was reading at post-high-school level. Also, her speech intelligibility was very good because, through the Cueing, she knew all of the sounds that made up every word. After the first 6 months of Cueing, she had figured out approximately how to make each sound with her own voice and how each sound mapped to the relevant Cues.

When Rachel was 5, we took Dr. Cornett’s advice given at the Cued Speech seminar we had attended and hired a deaf adult who was an expert in ASL to tutor us in sign language. He had

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 20 Children & Hearing Loss: A Resource Notebook for Illinois Families

20

advised that a deaf child with hearing parents should first learn the spoken language of the home, but should start learning ASL at a young enough age to be proficient enough by adolescence to socialize with other deaf children who signed. It was a great decision. At age 9, we got her involved in sign and voice theater at the International Center on Deafness and the Arts (ICODA). A couple of years later, she became part of ICODA’s Traveling Hands Dance Troupe. She gained so much self-esteem by participating in activities that celebrated her deafness—and it also gave her great opportunities to socialize with other deaf children and adults.

Rachel is now finishing her first year at Rochester Institute of Technology in Rochester, NY, where she is majoring in Environmental Science and Technology and was recently admitted to a program where she will earn her combined bachelor’s and master’s degrees in 5 years.

She received several different merit scholarships, including RIT’s Presidential Scholarship. So far, she is a straight-A student. In classes where she needs any special accommodations, she uses C-Print, which is a wonderfully accurate and instantaneous real-time captioning system.

RIT provides captioning or signing at every event so that all deaf students have access. They even provide video phones in each deaf student’s dorm room. Several other students there grew up with Cued Speech, and Rachel has joined together with them to start up an official Cued Speech Club at RIT! Because of her deafness, my daughter has to work much harder to succeed in everything that she does. But, because she was blessed by the availability of so many tools and organizations that have helped her in so many ways—Cued Speech, ASL, hearing aids (and great earmolds), FM systems, a cochlear implant, TTY’s, video phones, text messaging, instant messaging, Facebook, iPods (on which she can even download lyrics!), dance, theater, captioning, etc., the sky has been the limit. I wish that for every deaf child: all of these same blessings.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 21 Children & Hearing Loss: A Resource Notebook for Illinois Families

21

Donna Mattini Mother of Bobbie Jo and Donald I have 3 miracles - 2 deaf kids plus a deaf grandson!

When I first learned that my first-born daughter was deaf, a nurse at the hospital expressed her extreme concern that I might have a rash overreaction learning that the baby was deaf. But, to her shock, I was extremely thrilled. I barked at the nurse, "I’m proud to be deaf, and I certainly can teach my daughter who is my first-born to be proud as well!" The nurse just choked and walked out of the room!

When I had my second-born child, the nurse at the hospital indicated that the baby was deaf and stated, “God bless you, and may the Lord have mercy on you.” I barked at the nurse and said, “What do you mean by ‘God bless’ me and ‘Lord have mercy’ on me?!” She stated that I would have a hard time raising a disabled child. I gave the nurse a real long and dirty look and asked, “Do I look like I’m living in a bad and/or sad situation?” To her shock, she didn’t realize who she was talking to - ME, as a DEAF MOM! I choose a “total communication” program for my children, the school where I was an alumnus!

With my experience knowing who the teachers were... knowing that the teachers will teach properly and teach the way an educator would teach hearing children, including social studies and geography, to name a few.

Communication at home, of course, is total communication because I was raised as an oral child and learned sign language later in life. I believe that you need to teach a child who is deaf/hard of hearing/hearing impaired however you choose. Teaching my children sign language at an early age truly taught them to learn quicker at identifying objects and subjects: who, what, where, why, and how.

Now, that my children are adults (both of them are over 25 years of age), I now have a deaf grandson, but the problem is the other grandma prefers to use the “oral” method and I prefer to teach sign language. That causes my grandson to become a little confused wondering which method to use to communicate. My son, who is the father of his own son, explained that whenever he is at our house, he can use sign language but when he goes to the other grandma he can do whatever he wants. Currently, my grandson learns more in sign language and was able to understand the concepts of identifying the shape of an object such as square, circle, rectangle, oblong, etc., by using sign language!

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 22 Children & Hearing Loss: A Resource Notebook for Illinois Families

22

Judy Nelson Mother of Ryan My husband and I have been married for eight years. We have one child, Ryan, who is 5 years old. We began questioning if there was a problem with Ryan’s hearing when he was about 18 months old and still wasn’t really talking. At that time, we got the standard “he is a boy and is just not ready to talk yet” answer. Months went by and Ryan still wasn’t talking. After several inconclusive hearing tests, we scheduled an ABR test, which indicated our son had a profound hearing loss in both ears. At first, we couldn’t believe it – we were devastated. There was no history of deafness in either of our families. We felt a deep sense of loss and a lot of guilt for not realizing there was a problem sooner.

Initially, we had a lot of concerns. How was this going to affect our son – how was he going to communicate with people? We didn’t want life to be hard for him. We knew we would do whatever was necessary to communicate with him, which we assumed would be learning sign language. We had already been communicating with him in our own way. Both of our families were very supportive and all of them were eager to begin learning sign language. But we did not know anyone else who was deaf and we kept wondering how Ryan was going to communicate with other people, outside of our family.

After the ABR test, the audiologist at the hospital gave us a lot of information about different methods of communication, different agencies we needed to contact and various schools for deaf children. The audiologist also mentioned that Ryan could be a candidate for a cochlear implant, which at the time we knew nothing about. We knew we had to act fast because our son was already 2 1/2 years behind normal hearing children in speech, language, and learning. We began researching schools for deaf children.

We were advised to contact our local Child & Family Connections Office/Early Intervention Program for Illinois to help with services. This turned out to be a very frustrating procedure.

We felt that our coordinator was not knowledgeable of the laws and basic procedures of the Early Intervention Program. We did not receive accurate information. There was confusion on whether they would pay for hearing aids. We were given no options of methods of communication. We were informed our son would be taught sign language.

By chance, we live near St. Louis, Missouri, which happens to have three oral schools for deaf children. My cousin arranged for us to meet with a lady she worked with who had a 7-year-old son with a cochlear implant. We were amazed at what we heard. This boy was born profoundly deaf and he was able to speak. As we toured the oral schools in St. Louis, again, we were amazed at the children with cochlear implants who were speaking and listening and learning. Then we started researching the cochlear implant.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 23 Children & Hearing Loss: A Resource Notebook for Illinois Families

23

We chose to enroll our son. They had a wonderful program for toddlers, which included a lot of parent training and support. As they were teaching the children to speak and listen, they were also teaching the parents how to help their children learn in a more natural setting. They assisted us in setting up our Individualized Family Service Plan. At the Center, we received more information about the cochlear implant. Ryan wore hearing aids for several months – they did not help him at all. We took Ryan to be tested and we learned he was a candidate for the implant. Ryan was 2 years, 9 months old when he received the cochlear implant.

The first several months following the surgery were both exciting and frustrating. We knew Ryan was hearing sound, but he was still not talking. And then it happened – the words started coming and before long there were too many words to count. By age 4, Ryan was talking in complete sentences. We cannot get him to be quiet anymore! He speaks very clearly and has good voice quality. He communicates well with other children and adults. Ryan is currently enrolled at the Center and will probably mainstream into our local public school in 1-2 years.

We feel it is truly a miracle that our son can speak, and we are so thankful for the technology in the cochlear implant that gives him access to sound.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 24 Children & Hearing Loss: A Resource Notebook for Illinois Families

24

Kelly O’Malley Mother of John John was born at 25 weeks gestation due to my internal organs being too small to hold him 40 weeks. He was given the full dose of surfactant before delivery; however, he struggled to breathe and was put on a respirator for 4 days. He was taken off and did great for 7 days, then he contracted a blood infection which put him back on the respirator on/off for a total of 35 days. Our total time in the NICU was 6 1/2 months. During his hospital stay, he had a level III brain bleed which resolved, two seizures (no known cause), ROP Stage 2/Zone 2 which resolved, acid reflex (required a fundaplication & nissen surgery to help), hernia (required a second surgery), gross motor delays, cyanotic episodes where he would quit breathing, and repeatedly failed the hearing test. No hearing test person thought he ‘really failed’ because John would be awake during the test & refuse to sleep and he would loudly suck on his pacifier, or the NICU was so loud – they thought for sure it interfered. Finally, they told us to get him checked once he left the NICU. Finally, after 6 1/2 months of hospitalization and a second opinion, they figured out John’s biggest problem – he was having cyanotic episodes that were life threatening because he did not have enough oxygen reserves in his lungs to breathe; therefore, he needed a higher flow of oxygen to keep stable. He was released 2 days later on 1.5 liters of oxygen.

We went for the hearing test – which showed he had a complete hearing loss in both ears up to 90 decibels. The audiologist said the finding was also consistent with water in the ears but usually that only accounted for a loss up to 40 decibels. We were referred to an ear doctor to see about water in the ears. It was confirmed both ears had water in them and we scheduled the tubes in both ears with great hope. We waited 3 weeks after the procedure to do a follow-up ABR. The second ABR showed the exact same results – a profound hearing loss in both ears.

The audiologist told us that with this type of loss John would probably never hear but should get cochlear implants to hear only loud noises. She said we would probably just have to teach John sign language. Not having any hearing-impaired family, friends or acquaintance, this unknown territory was devastating news. I also believe she took one look at my son – recently released after a 6 1/2-month hospital stay, on oxygen, not moving very much due to motor delays – and made a few more assumptions about his potential.

We went back to the ENT Doctor and I was shocked how little he knew about cochlear implants. I asked him about the audiologists opinion on John’s hearing potential and he said he wasn’t sure but agreed cochlear was the next step – even if it didn’t give him much – some hearing was better than none.

We met with a doctor May 27, 2005, and I will never forget that appointment because it was so hopeful. She said there was every reason to believe John would have a good outcome with the Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 25 Children & Hearing Loss: A Resource Notebook for Illinois Families

25

cochlear, although further testing would tell her more. She said that many kids with one cochlear implant have normal hearing with the exception of a.) localizing noise, and b.) background noise interference. She said many learn to speak without any noticeable disability and the earlier we do the surgery the better for developing normal speech. She did say John’s speaking ability could be hindered by his oral motor skills or any neurological problems. We did the follow-up tests – Cat scan & MRI – as soon as possible and everything looked good.

At the same time, I was looking for educational help with John’s hearing loss and was referred to a school that was the most hopeful school I had ever been to. I was taken around and we spoke to many kids of all ages – 3, 5, 7 & 8. I was shocked – most of the kids spoke better than I did. They could hear perfectly and were chattering like ‘normal kids.’ From that day on, I did not worry about my son’s deafness because I saw hope.

John turned 12 months (even though his corrected age was less than 9 months) old on August 20th, and we were in the middle of getting insurance approval (which took 50 days!) for the implant. Even though John was still on oxygen and the cold and flu season was approaching fast, all doctors were in agreement. Although the surgery had more risks for John due to his damaged lungs (anesthesia would be more challenging), it was critical to do it as early as possible. John had his surgery on October 12th. We stayed for two nights due to increased observation because of John’s lungs. On November 14th John got turned on and I videotaped his ‘amazed look in his eyes’ as he heard for the first time. By Christmas, he was tuned up so well, he could hear at ‘normal’ speaking levels. By January, he was communicating back and forth to me, and also recognizing my voice when I was out of sight. Although John’s low-tone mouth muscles may make it a challenge for him to speak clearly, we are doing everything we can to make sure he reaches his full potential. I consider it a miracle that he can hear normally and is starting to communicate interactively.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 26 Children & Hearing Loss: A Resource Notebook for Illinois Families

26

Alison Rollins Mother of Max and Eli I am a hearing mom who is married to a deaf man. My husband’s cause of deafness is genetic. He is the first person in his family to have profound, bilateral hearing loss. Before pregnancy, we met with a genetic counselor who explained there was an overall chance of about 20% that our child would be born with some type of hearing loss. Before pregnancy, we agreed to provide a bilingual home for our children. Our plan was that when communicating with our children, my husband would use American Sign Language and I would use spoken English. Before pregnancy, we had a lot of negative beliefs related to cochlear implants. I’ve found, however, that it’s easy to think you know what choices you would make until you are forced to actually make the choice.

Our first son was born 5 weeks early. We were worried there would be complications due to an early delivery but thankfully Max was strong and healthy. Then Max “failed” his Newborn Hearing Screening. Although we knew this was a possibility, we were devastated. Our minds were racing – should we stick to our original plan?

We quickly began to discuss our options. We considered whether we should use American Sign Language exclusively or provide an auditory/oral environment. At the time, cochlear implant surgery was not the path we wanted to take. I immediately called to set up an appointment for an ABR which resulted in a diagnosis of a profound, unilateral loss. Although this was worrisome to us, we were relieved that making a decision about a cochlear implant was not something we had to face.

Then 3 years later, Eli came along. Eli passed the Newborn Hearing Screening. I remember feeling very relieved in the hospital. I was thankful that we would not need to worry about all of the appointments and driving back and forth to doctors and audiologists. We went home to enjoy our new, expanded family.

When Eli was about 7 weeks old, I felt in my gut that something wasn’t “right." Our dog would bark and he wouldn’t even flinch. Max would play tickle with his dad and would scream and still, Eli didn’t bat an eyelash.

If he was looking at a light or a fan, I could not get him to look at me. People told me I was worrying too much.

Our doctor told us not to worry. He told us to have Eli’s eyes checked and wait another month. We have genetic hearing loss in our family and our doctor told us to wait! I thank God I trusted my instincts and brought him for a repeat hearing screening. Eli referred in both ears. We then brought him for a full ABR/ASSR which confirmed that he had profound hearing loss bilaterally. I remember being told the news and feeling ice cold. I am a teacher of the deaf at a school that uses Total Communication. I have a deaf husband. I have many Deaf friends and have been involved in the Deaf community for 20 years. I have worked very hard to learn all I can about issues related to the education of deaf and hard of hearing children. Yet in that moment, I felt I had never known anything. The audiologist was talking, handing me a folder of information. The social worker said something about calling her if we had any questions. I heard…. nothing. I comprehended…. nothing.

Suddenly, everything we thought we believed, did not feel true. Once again we were faced with a flurry of questions. We worried, should we get him a cochlear implant? What will our friends think? What will his life be like? How will he communicate with the rest of our family members who don’t sign? Eli began early intervention when he was 4 months old. While we struggled with our decision, we did decide to get a cochlear implant for Eli. For our family, it was the right path to take. We went back to our original plan and continued to communicate using sign language and spoken English.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 27 Children & Hearing Loss: A Resource Notebook for Illinois Families

27

Do we worry whether we made the right choices for Eli? Sure we do. But isn’t that the nature of parenting in general? I do want to emphasize that hearing loss doesn’t change the fact that Max and Eli are boys who love to do typical boy things. They love music, swimming, riding their bikes, reading, playing with cars, and playing video games.

There are many things I have learned throughout our journey so far. Among the most important is that it is okay to change paths when the one you are on doesn’t feel right. There will be many curves, bumps, and forks along the way. Sometimes, the paths even merge. What’s important is to trust your instincts, do what’s best for YOUR family, and know you are never alone along the way.

2014 UPDATE It's hard to believe but Max is now 12 years old and going into 7th grade. Middle school has presented us with the typical middle school challenges. He uses an assistive listening device for all of his classes so he can hear the teacher better. It has been difficult for him to remember to bring the microphone to each class. Peer groups are starting to become more pronounced. Max has a nice group of friends and tells me that he is never made fun of by other kids because of his hearing loss. He continues his love of music and joined the International Center on Deafness and the Arts (ICODA) a few years ago. He has enjoyed his involvement in the musicals and being able to interact with others who are "like him."

Eli is soon turning 9 years old and going into 3rd grade. He has been fully mainstreamed since first grade. He has made classroom friends and has done well in school. He has also found his love of sports. Eli plays as a goalie for our local hockey team. For the last three years in June, he was involved in a week-long hockey camp in the Downers Grove/Woodridge area. It is a camp that is for children with hearing loss called AHIHA (American Hearing Impaired Hockey Association). People come from all over the country for this camp. It is a great time for all.

We have been very fortunate to have found these organizations for our boys. The resources available throughout Illinois and the ability to locate those resources has improved so much in the last 10 years. We are so thankful to CHOICES for Parents and the coalition members for providing the support and resources for our family and families everywhere.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 28 Children & Hearing Loss: A Resource Notebook for Illinois Families

28

Eliza Ellet Mother of Miranda Our new life, as we know it today, came into being 8 years ago. One tiny 18”, 6.12lb baby girl irrevocably brought our lives to a standstill. She was born via scheduled cesarean on her due date, as she had not one tiny thought of making an appearance, and the doctor said she would probably hold out for weeks by the look of it. She moved so infrequently, that I had to have a stress test every week, the last 2 months of my pregnancy. To make it even worse, I would end up with an ultrasound every week, because not even the loud buzzer they put against my abdomen, would rouse her! We get quite a laugh now over those memories. Honestly, I always felt something wasn’t “quite right” and going back to the operating room, I remember grabbing her Father’s arm and saying, “I don’t feel right. I don’t know what it is, but I know something is wrong.” He said it was just nerves and everything would be fine. He was right! She was perfect, whatever that means, but she was perfect to me. The next day, I just held her and looked upon her tiny little face, and it came back…something wasn’t right. She’s my second child and I knew that she was reacting oddly to the stimuli in the room. The vitamin drops were still making her eyes cloudy and she didn’t want to open them. She was so very quiet, too quiet. Within the next couple of hours, they whisked my tiny little one to the NICU, where she would stay for the next month.

Every day for the next 3 weeks held a new finding. I remember when they said that she failed her initial hearing test and just said, “Okay.” I was dealing with her possibly not living, so hearing, was a complete afterthought. As things settled down and no surgeries were needed at the moment, it came to me that my daughter might not hear me. I found out a day later by her nurse by accident, that they thought she was blind also. My world spun and I just stared at her horrified at not knowing, “What did I do to her? What did I do during my pregnancy? Was God mad at me and took it out on her?” Then the worst fear I had felt was, “What if she didn’t know I loved her?” She couldn’t hear me say it and she couldn’t see me sign it. I couldn’t bear the thought of my innocent tiny angel not knowing that she was loved more than anything in the world. My Aunt came to see us and I broke down and told her I couldn’t do it. She listened to me sobbing everything out, and then she asked if I was done. I asked her what I was supposed to do and she looked me in the eye and said, “Pull your boot straps up and get over it! There’s no time for that right now. She’s your daughter, now you go in there and take care of her. I never want to hear you say again, that you can’t do it.” She was right. That “talking to” was what I needed. She told me about a year ago, that she wanted to cry with me and was so scared, but she knew she couldn’t let me see that…she was right again.

Fast forward 8 years and I wish every day I could go back and tell me and my family, it will be just fine, not to worry so much. Miranda, is the strongest person I know. She is DeafBlind, she

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 29 Children & Hearing Loss: A Resource Notebook for Illinois Families

29

does have some residual hearing in her right ear, and for now, she is Legally Blind, but that is progressive also. We changed paths a few times. From ASL to an implant, to explanting, and finally to being bilingual ASL/Oral English. There have been setbacks, many of them, but there has been so much growth. She is amazing, happy, mischievous, and pretty darn cute! Do I worry? Every day. Are we holding her back? Is she learning about her culture? Should we put her in a TC class, instead of Oral? Should we implant again, in the future? The biggest question is, “Will she understand when she gets older, that we have always wanted the best for her? Will she hate us for the decisions we have made?” I guess only time will tell and we will cross that when we get to it.

The one thing we have become is adaptable. Learning how to roll with it. Her big sister, Magdalena, has become one of her biggest champions. Along the way, we have had so many wonderful organizations help guide us. Chicago Lighthouse, Hands and Voices, Chicago Hearing Society, Illinois Advocates for the DeafBlind, National Federation of the Blind, Guide

By Your Side, CHOICES for Parents, and many others. There’s a lot more journey left and we know we have them all behind us, so we’re ready!

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 30 Children & Hearing Loss: A Resource Notebook for Illinois Families

30

Facts About Hearing Levels

Facts About Hearing Levels

“I am the mother of twins.”

“I am a graduate of NIU with a doctorate in educational administration.”

“I am a Gallaudet University alumnus.”

“I am deaf.” ~Denise Kavin

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

31

Facts About Hearing Levels Trying to understand a medical diagnosis of any kind can be overwhelming. Professionals will give you information and you may read about it but you still may not understand it. Do not feel bad.

The parent of one deaf child stated, “When our son was diagnosed with a hearing loss, we had to learn two new languages. Sign language and the medical jargon that the professionals used to describe the daily events happening in his life. OAE, ABR, amplification, audiogram, sensorineural, bilateral, visual communication, and the list goes on and on. I felt like we needed a translator with us at every appointment.”

It is okay if you do not understand something. Ask the professional to explain it another way.

You can ask them to explain it as many times as is necessary for you to feel comfortable with the new information. Remember to be patient. Understanding will come.

In the Facts About Hearing Levels section of this handbook you will find the following information: • • • • • •

Description of the Ear How Hearing Works Types of Hearing Loss Types of Hearing Tests Description of an Audiogram Degrees of Hearing Loss & Potential Effects

Photo provided courtesy of Cochlear Americas ©2009 Cochlear Americas

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 31 Children & Hearing Loss: A Resource Notebook for Illinois Families

32

Description of the Ear The ear is made up of three parts: 1. Outer Ear 2. Middle Ear 3. Inner Ear The Outer Ear This part of the ear includes the auricle or pinna (part of the ear on the outside of the head) and the ear canal. It is also called the external ear.

Sound travels through the ear canal and moves or vibrates the eardrum (tympanic membrane).

Illustration provided courtesy of Cochlear Americas Š 2009 Cochlear Americas

The Middle Ear This part of the ear is between the eardrum and the inner ear. The middle ear contains three tiny bones called the ossicles. The eardrum vibrates causing the middle ear bones to move and send the sound through the middle ear to the inner ear. There is also a tube that runs from the middle ear space to the back of the throat called the Eustachian tube.

The Inner Ear The inner ear includes the cochlea, (the spiraled organ of hearing), the semi-circular canals (the organ of balance), and the auditory nerve (8th cranial nerve leading from the ear to the brain).

When sound vibrations enter the cochlea from the middle ear, the hair cells send nerve impulses to the brain via the auditory nerve. Once the brain receives the nerve impulses, there is a sensation of hearing.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 32 Children & Hearing Loss: A Resource Notebook for Illinois Families

33

How Hearing Works The auditory system is a very complex subject. But it’s important to understand how the hearing process works and to compare that with what happens with a person who has hearing loss. This knowledge will help you to feel more comfortable and confident in understanding your child’s hearing loss and making decisions.

1. Sounds enter the ear canal and travel to the ear drum.

2. These sound waves cause the ear drum to vibrate, sending the bones in the middle ear into motion.

3. Tiny hair cells inside the inner ear (cochlea) convert this motion into electric Photo courtesy of MEDEL impulses/signals. The ear has over 25,000 tiny hair cells to help you hear the varying degrees of sound.

4. These impulses/signals go up to the hearing (auditory) nerve to the brain. The brain interprets the impulses/signals as sound and gives meaning to the information.

If any part of the outer, middle, or inner ear is not working properly, the ability to hear may be affected.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 33 Children & Hearing Loss: A Resource Notebook for Illinois Families

34

Types of Hearing Loss (Hearing Status) Loss of hearing can happen in any part of the ear. This includes the outer ear, middle ear and the inner ear. Hearing loss can happen in one of these places or in more than one place. Each type of hearing loss has a different name and has different possible treatments.

Conductive Hearing Loss in Children This type of hearing loss involves the outer and/or middle ear. A conductive loss prevents sound from moving effectively through the outer and/or middle ear so that it can move along to the inner ear.

The simplest way to perceive conductive hearing loss is to plug your ears. Sounds that normally enter the canals are reduced.

Causes of conductive hearing loss in children can include: • • • • •

Atresia – closure of the ear canal Malformations of the ossicles Middle ear infections, otitis media, or fluid in the middle ear Obstruction of the ear canal by ear wax or foreign objects Microtia – smallness of the auricle

Treatment considerations of conductive hearing loss in children…

Most conductive hearing losses can be treated and corrected with medication, surgery, or by amplifying sound through a hearing aid. Hearing aids can be very effective in compensating for a conductive hearing loss when surgical or medical treatment is not an option.

Sensorineural Hearing Loss in Children This type of hearing loss is the most common permanent hearing loss in children and involves the inner ear. The primary cause of sensorineural hearing loss is damage or deformity of the hair cells in the cochlea. Sensorineural hearing loss may also occur when the auditory nerve does not function properly, though this is less common.

Auditory Neuropathy Spectrum Disorder (ANSD) is a type of hearing loss that causes poor transmission of nerve impulses along the auditory nerve although some of the hair cells are intact.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 34 Children & Hearing Loss: A Resource Notebook for Illinois Families

35

Some common causes of sensorineural hearing loss can include: • • • • • • • • • • • • • • • •

Faulty development of the inner ear Genetic or family history of hearing loss (Connexin 26, CHARGE Syndrome) Damage to the inner ear or hearing nerve from illness before birth Rubella Toxoplasmosis Cytomegalovirus (CMV) Meningitis Lack of oxygen at birth Treatment with certain drugs such as streptomycin, kanamycin, garamycin, Quinine that reaches toxic levels Premature birth with NICU admission Damage to the ear from loud noises Head injuries Rh Factors Measles Severe jaundice

Treatment considerations of sensorineural hearing loss in children…

Sensorineural hearing loss is generally permanent and cannot be treated by medication or corrective surgery. The most common treatments to compensate for this type of hearing loss are hearing aids or cochlear implants.

Several factors (social, emotional or audiological) affect the decision for a child to use hearing aids, get a cochlear implant, or do neither. Depending on the degree of hearing loss, hearing aids can be very effective in providing children improved sound awareness. However, children with severe to profound hearing loss have a more difficult time understanding speech, despite improved sound awareness, and may qualify for a cochlear implant. There are standard audiological considerations for choosing between aids or an implant.

Mixed Hearing Loss A mixed hearing loss occurs in both the outer/middle ear and in the inner ear. It is a combination of a conductive loss and sensorineural hearing loss.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 35 Children & Hearing Loss: A Resource Notebook for Illinois Families

36

Unilateral Hearing Loss A unilateral hearing loss occurs in only one ear. It can be conductive, sensorineural, or mixed.

Although a child with this loss has good hearing in one ear, he or she will have difficulty knowing where sound is coming from, hearing in noisy environments, and hearing on the affected side.

Progressive Hearing Loss A progressive hearing loss occurs when a child loses their hearing over time. A baby may be able to hear at birth and gradually lose their hearing. It is important to note that even if a baby passes their newborn hearing screening, this does not ensure that they will always have normal hearing. In fact, gradual losses may occur any time after birth and it is important for parents to tell their pediatrician if they have concerns about their child's hearing.

Fluctuating Hearing Loss This type of hearing loss refers to hearing that changes, or fluctuates. A child may have better hearing on some days and poorer hearing on other days. Fluctuating hearing loss can be conductive or sensorineural. A common cause of fluctuating hearing loss is otitis media, or fluid in the middle ear.

Syndromic Hearing Loss Sometimes an infant or young child who is deaf or hard of hearing may have other signs or symptoms as well. When multiple congenital malformations appear together, they may be described as a syndrome. This is important because if hearing loss is detected early, then hearing specialists, such as genetic professionals, may be able to test for certain syndromes that may not be physically identifiable by appearance alone. Several examples of such syndromes include: • • • • •

Usher Syndrome which is associated with loss of vision Jervell and Lange-Nielsen Syndrome which is associated with heart defects Pendreds Syndrome is associated with an enlarged thyroid and balance issues Waardenberg Syndrome features distinctive facial characteristics Kabuki Syndrome which is a genetic syndrome with varied health issues

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 36 Children & Hearing Loss: A Resource Notebook for Illinois Families

37

DeafBlind The term deafblind covers a wide range of hearing and vision loss - from complete deafness and blindness to vision loss of 20/70 in the better eye (corrected) or decreased visual field (20 degrees or less) and a mild hearing loss of 30 dB in the better ear (aided). Since the combination of vision and hearing loss compounds the disability, the term deaf-blind is used, and students must receive services based on both vision and hearing needs. A variety of causes of deaf-blindness have impacted children in Illinois. The majority have no known cause, or a variety of unusual genetic causes. The most common single causes of deafblindness in Illinois are CHARGE syndrome, Usher Syndrome, and complications of prematurity.

An Overview of DeafBlindness is available at https://nationaldb.org/library/page/1934.

Types of Hearing Tests Working with an experienced audiologist is critical in getting valid assessment of a young child’s hearing. Tests of hearing function in children can be accomplished with a broad range of techniques available to pediatric audiologists.

Hearing testing is done to find out what a child is able to hear. Usually an audiologist will do the testing. The audiologist and/or otolaryngologist may do a variety of tests to find out more specific information about: • The type of hearing loss/status: Conductive, Sensorineural or Mixed • The degrees of the hearing loss/status: Mild, Moderate, Severe or Profound • The reason for the hearing loss/status: o The audiologist or otolaryngologist may discuss with the family the option of referral for genetic testing. o The otolaryngologist may complete additional lab or imaging tests.

Pediatric audiologists employ multiple tests (described below) to assess hearing sensitivity.

Some procedures are better suited for a particular child, based on age, ability to participate in the testing, medical condition of the child, etc. A typical method of pediatric hearing assessment employs the “cross-check principle.” That is, the results of a single test are crosschecked by an independent test measure. The audiologist chooses and performs different tests to get the most accurate determination of a child’s hearing.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 37 Children & Hearing Loss: A Resource Notebook for Illinois Families

38

OBJECTIVE TESTS Objective tests of hearing do not require active participation from the child and are often very helpful in assessing hearing levels.

Otoacoustic Emissions Testing Also known as: OAE, DPOAE, TEOAE How it is done: A small probe is placed in the child’s ear canal. A sound, generated by the testing equipment is sent to the cochlea (inner ear). If the hair cells in the cochlea are functioning normally, they generate an otoacoustic emission that is generated by the testing equipment.

What it will show: If an emission is present, it suggests normal cochlear function. If an emission is not present, then further testing is needed. Generally, children with typical hearing or mild hearing levels will have otoacoustic emissions present. Otoacoustic emissions alone are not enough to diagnose typical hearing.

Who is it for: This test is used for infants, for children who cannot respond to other types of hearing tests, and for children with disabilities. OAEs can be used regardless of a client's age at testing; as another way to cross-check test results; to help diagnose auditory neuropathy and to monitor hearing when an individual has had noise exposure.

Auditory Evoked Potentials Different types of testing may be known as: Brainstem Audiometry Evoked Response, BSER, BAER, ABR, ASSR How it is done: This tests hearing from the level of the outer ear through the lower brainstem.

This test can be done if the child is either sedated or asleep. Electrodes are attached to the child’s head and earphones are placed on the child’s ears. Sounds are played through the earphones and the electrodes measure how the child’s brain responds. This test gathers specific information about the child’s hearing at different pitches and loudness levels. This test is completely painless.

What it will show: This test gives a close approximation of the child’s hearing sensitivity.

Who is it for: This test is used for infants, for children who cannot respond to other types of hearing tests, and for children with severe disabilities.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 38 Children & Hearing Loss: A Resource Notebook for Illinois Families

39

Acoustic Immittance Also known as: Impedance testing, immittance testing, or tympanometry May also include: acoustic reflexes How it is done: A probe is placed in your child’s ear and a signal is presented. There may be a change in pressure depending on what information the audiologist is trying to gather. The signal bounces off the eardrum and back to the probe. It only takes between 3-30 seconds per ear.

What it will show: Tympanometry will chart the way sound enters into the middle ear which shows how the middle ear is functioning. It can help determine if there is a hole in the ear drum or if there is fluid behind the eardrum. This is part of one test that audiologist uses to assess eardrum movement, but is not always clear-cut.

Who is it for: Any child.

SUBJECTIVE TESTS Subjective tests of hearing require a response from the child. This response can range from a widening of the eyes, to a turning of the head, to a raising of the hand. These responses provide the best indication of what sounds the child responds to and provide the data for the audiogram.

Subjective tests can be done using a speaker in the test room (a soundfield system) or earphones. Tests done in the soundfield cannot separate the hearing levels of the left ear from that of the right ear. Tests done with earphones provide the best ear-specific data, allowing for diagnosis of hearing levels for each ear separately.

Behavioral Observation Audiometry (BOA) How it is done: An audiologist observes the child’s reaction to different frequency and loudness levels. Reactions may include a sucking reflex or head turn.

What it will show: The test relies heavily on parent and provider interpretation. Therefore, the test will only give a rough estimate of the degree of hearing level. Behavioral observation audiometry must be part of a larger test battery.

Who is it for: This test is usually done with very young babies, especially when no other tests are available.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 39 Children & Hearing Loss: A Resource Notebook for Illinois Families

40

Visual Reinforced Audiometry (VRA) How it is done: The child will either sit in a chair or on the lap of an adult in the sound booth.

When the sound is introduced a toy will light up. Children will learn to look at the toy in response to the sound, even when the sound is the quietest the child can hear.

What it will show: This test can tell the type and degree of hearing levels at different pitches.

Who is it for: This test is used for infants and young children with adequate neck control to turn towards a stimulus.

Play Audiometry How it is done: Children will drop a block or perform some other game when they hear a sound. The child is rewarded for a correct response. Some listening games may include stringing beads, building block towers, putting pegs into a peg board, putting pennies in a bank or doing a puzzle. Earphones are usually used with this test.

What it will show: This test can tell the type and degree of hearing levels at different pitches.

Who is it for: Young children, about 3 - 4 years of age.

Pure Tone Audiometry How it is done: Tones of different pitch and loudness levels are introduced to your child. Your child will indicate if they have heard the tone, usually by raising their hand. The tones are presented through earphones or through a bone conduction vibrator that works by sending signals through vibrations in the skull to the inner ear.

What it will show: This test will give information about how your child hears different pitches at different loudness levels. Earphones are used to collect individual ear information. If earphones are not used, this information will reflect the better ear.

Who is it for: Children (approximately 4-5 years of age) through adults.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 40 Children & Hearing Loss: A Resource Notebook for Illinois Families

41

Audiograms What is an Audiogram?

An audiogram is a graph of the softest levels at which your child can hear sound. It is a picture of the results of a test that is done by an audiologist. Your child’s audiogram will often be used to describe his/her hearing status.

The audiogram shows two things: Intensity and Frequency. Intensity, the loudness of sound, is measured in decibels (dB). Loudness levels are located horizontally across the audiogram.

Intensities usually go from 0 dB to 110 dB, with 0 dB being very quiet and 110 dB being very loud. Frequency, the pitch of the sound, is measured in Hertz (Hz). The different frequencies are found along the vertical lines of the audiogram. Frequencies range from 250 Hz to 8000 Hz, although other frequencies may be tested at the audiologist's discretion. 250 Hz is a very lowpitched sound and 8000 Hz is a very high-pitched sound.

What does an audiogram look like?

As the audiologist tests your child’s hearing, they will make marks using different symbols on the audiogram that represent the softest levels at which your child consistently responds. This level of sound is called the threshold. The location of each symbol will tell you how loud a certain pitch must be for your child to hear it.

What do the symbols and drawn lines mean?

If your child is tested with earphones, it is called Air Conduction Testing. Because sound is presented to each individual ear, information can be gathered about hearing in each ear, separately. The symbols used to represent Air Conduction testing are an X for the left ear and an O for the right ear. Sometimes colors are used for all of the different symbols: red for right and blue for left.

If the child does not hear the sound at the loudest level of the audiometer (the machine used to test hearing), it may be indicated several different ways, with a NR (no response), a squiggly downward line or an arrow downward from the X or O. If your child is tested using a bone conduction vibrator (a vibrating piece of plastic placed behind the ear) then brackets will be used. The symbol > is used to show the left ear and Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 41 Children & Hearing Loss: A Resource Notebook for Illinois Families

42

< for the right ear.

After the audiologist has information about various pitches, they will connect the symbols to make a line on the graph for each ear. This line is the configuration of the audiogram.

Configurations vary due to each child’s individual hearing loss.

Sometimes configurations go somewhat straight across. These are called flat hearing losses. Some configurations will angle downward, either gently or sharply. These are called sloping losses.

Professionals may use these configurations to describe your child’s hearing level.

Due to the relationship of hearing and speech, an audiologist may try to get some additional information and try to find out the softest level at which your child can perceive speech. This is called a speech detection threshold.

The audiologist may also try to find out the softest level at which your child understands speech. This is the speech reception threshold (SRT) and is typically used in children older than 30 months. The audiologist may read a list of two syllable spondee words (such as baseball, hot dog, ice cream) to the child and have the child repeat the words or point to a picture. This is usually recorded in decibels.

Word recognition or speech discrimination testing may also be done using listening alone or using listening and looking at the audiologist’s face. A variety of stimuli are used with this type of test and it is usually recorded in percentages (how many words are repeated correctly).

Many of the speech sounds are made in the pitches between 250 and 5000 Hz and are spoken at a loudness of 20 to 60 dB. Sometimes an audiogram will have shading on it that resembles a banana and falls in between pitch and loudness levels. This is put on the audiogram to show where speech sounds typically occur. If the audiologist fits a hearing aid on your child, they will try to make sure that your child can hear sounds in this area.

The audiologist may also use the audiogram to chart what sounds your child can hear with hearing aids on. The softest sounds your child can hear with hearing aids is called the aided threshold. Many times, the letter A will be the symbol used to represent aided thresholds.

Ideally, these A’s will be within the banana lines. See the last graph in this section.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 42 Children & Hearing Loss: A Resource Notebook for Illinois Families

43

Speech Intelligibility Index (SII) The audiologist may quantify the amount of speech your child can hear using the speech intelligibility index (SII). This number varies from 0 to 100. A child with an SII of 100 has access to all the speech cues and a child with an SII of 0 has access to no cues of speech. This number is useful for measuring the change in access to speech provided by a hearing aid. For example, a child may have an SII of 12 without their hearing aids, but with the hearing aids on, they may have an SII of 75.

Children are able to understand speech very well even with an SII of 80. That is because not every speech cue needs to be heard for a person to understand the message. However, when environments become noisy, every speech cue counts, so children with hearing loss tend to have more difficulty in noisy places.

If you want to know what your child’s SII is without hearing aids, you can plot their hearing thresholds on a “count-thedot” audiogram. The number of dots that are below the audiogram is approximately equal to the child’s SII.

Sample: An audiogram is produced from dB/Hz measurements and illustrates degrees of a child's hearing level.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 43 Children & Hearing Loss: A Resource Notebook for Illinois Families

44

What can you find out from an Audiogram?

Although your child’s audiogram will be referred to often through the years and may even be used to describe your child’s hearing levels, it is not a predictive measure. An audiogram can be compared to a growth chart. A growth chart will give you some indication as to how big the child may become as an adult, but it is not a precise indicator of who that child will become.

An audiogram can give you an idea of what that child’s usable (residual) hearing is, but is not a precise indicator of how your child will use their hearing to learn speech or how your child will process sound. Remember, your child is unique! More than anything, a child is NOT his or her audiogram!

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 44 Children & Hearing Loss: A Resource Notebook for Illinois Families

45

Degree of Hearing Levels and Potential Effects The following chart provides information on the effect of different ranges of hearing loss and the possible impact on the understanding of language and speech, the possible social impact, and the potential educational accommodation and service needs. However, this is only a guide.

Each child has unique potential. Only time will tell how your child’s hearing level will impact him/her in these areas. Early access to language acquisition is key, as well as early access to amplification, if appropriate. Early access to language acquisition and amplification, as appropriate, goes a long way in minimizing the impact of hearing on the various areas described below. These charts can be helpful to share with family members, caregivers, therapists, and educators in your child’s life.

Relationship of Hearing Loss to Listening and Learning Needs © 1991, Relationship of Degree of Long Term Hearing Loss to Psychosocial Impact and Educational Needs, Karen Anderson & Noel Matkin, revised 2007, reprinted with permission

MINIMAL HEARING LOSS (16-25dB) Possible Impact on the Understanding of Language & Speech Impact of a hearing loss that is approximately 20 dB can be compared to ability to hear when index fingers are placed in your ears.

Child may have difficulty hearing faint or distant speech. At 16 dB student can miss up to 10% of speech signal when teacher is at a distance greater than 3 feet. A 20 dB or greater hearing loss in the better ear can result in absent, inconsistent or distorted parts of speech, especially word endings (s, ed) and unemphasized sounds. Percent of speech signal missed will be greater whenever there is background noise in the classroom, especially in the elementary grades where instruction is primarily verbal. Young children have the tendency to watch and copy the movements of other students rather than attending to auditorily fragmented teacher directions.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

May be unaware of subtle conversational cues which could cause child to be viewed as inappropriate or awkward. May miss portions of fast-paced peer interactions which could begin to have an impact on socialization and self-concept. May have immature behavior. May be more fatigued due to extra effort needed for understanding speech.

Due to noise in typical classroom environments which impede child from having clear access to teacher instruction, will benefit from improved acoustic treatment of classroom and sound-field amplification. Favorable seating necessary. May often have difficulty with sound/letter associations and fine auditory discrimination skills necessary for reading. May need attention to vocabulary or speech, especially when there has been a history of ear problems. Depending on loss configuration, may benefit from low power hearing aid with personal FM system. Appropriate medical management necessary for conductive losses. In-service on impact of “minimal" hearing loss on language development, listening in noise and learning, required for teacher.

Children & Hearing Loss: A Resource Notebook for Illinois Families 45 Children & Hearing Loss: A Resource Notebook for Illinois Families

46

MILD HEARING LOSS (26-40dB) Possible Impact on the Understanding of Language & Speech Effect of a hearing loss of approximately 20 dB can be compared to ability to hear when index fingers are placed in ears. Mild hearing loss causes greater listening difficulties than a "plugged ear" loss.

Child can "hear" but misses fragments leading to misunderstanding. Degree of difficulty experienced in school will depend upon noise level in the classroom, distance from the teacher, and configuration of the hearing loss.

At 30 dB can miss 25-40% of the speech signal; at 40 dB may miss 50% of class discussions, especially when voices are faint or speaker is not in line of vision. Will miss unemphasized words and consonants, especially when a high frequency hearing loss is present. Often experiences difficulty learning early reading skills such as letter/sound associations. With hearing aids alone, child's ability to understand and succeed in the classroom will be substantially diminished by speaker distance and background noise, especially in the elementary grades.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

Barriers begin to build with negative impact on self-esteem as child is accused of "hearing when he/she wants to," "daydreaming," or "not paying attention." May believe he/she is less capable due to understanding difficulties in class.

Child begins to lose ability for selective listening, and has increasing difficulty suppressing background noise causing the learning environment to be more stressful.

Child is more fatigued due to effort needed to listen.

Noise in typical class will impede child from equal access to teacher instruction. Will benefit from hearing aid(s) and use of a desk top or ear level FM system in the classroom.

Needs favorable acoustics, seating and lighting. May need attention to language development, auditory skills, articulation, speechreading and/or support in reading and selfesteem, based on the degree of success of early intervention to prevent language and early learning delays. Teacher in-service on impact of so called "mild" hearing loss on listening and learning.

Children & Hearing Loss: A Resource Notebook for Illinois Families 46 Children & Hearing Loss: A Resource Notebook for Illinois Families

47

MODERATE HEARING LOSS (41-55dB) Possible Impact on the Understanding of Language & Speech Even with hearing aids, child can "hear" but typically misses much of what is said. Without amplification, understands conversational speech at a distance of 3-5 feet, if sentence structure and vocabulary are controlled. The amount of speech signal missed can be 50+% with 40 dB loss and 80+% with 50 dB loss.

Child is likely to have delayed or disordered syntax, limited vocabulary, imperfect speech production and flat voice quality. Early consistent use of amplification and language intervention increases the probability that the child's speech, language and learning will develop more typically.

Use of a visual communication system to supplement speech may be indicated, especially if large language delays and/or additional disabilities are present. Child will not have clear access to verbal instruction due to typical noise in class. With personal hearing aids alone, ability to perceive speech and learn effectively in the classroom is at high risk. A personal FM system to overcome noise in the classroom and distance from the teacher may be necessary.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

Barriers build with negative impact on self-esteem as child is accused of "hearing when he/she wants to," "daydreaming," or "not paying attention." Often with this degree of hearing loss, if hearing aids are not worn communication will be significantly affected, and socialization with peers can be difficult, especially in noisy settings such as cooperative learning situations, lunch or recess. May be more fatigued than classmates due to effort needed to listen.

Consistent use of amplification (hearing aids + FM) is essential.

Needs favorable classroom acoustics, seating and lighting. Consultation or program supervision by hearing impairment specialist to coordinate services is important. Depending on early intervention success in preventing language delays, special academic support may be necessary, especially for elementary grades.

Attention to growth of oral communication, reading, written language skills, auditory skill development, speech therapy, selfesteem likely. Teacher in-service required with attention to peer acceptance.

Children & Hearing Loss: A Resource Notebook for Illinois Families 47 Children & Hearing Loss: A Resource Notebook for Illinois Families

48

MODERATE TO SEVERE HEARING LOSS (56-70dB) Possible Impact on the Understanding of Language & Speech Even with hearing aids, child can usually "hear" people talking around him/her, but will miss fragments of what is said resulting in difficulty in situations requiring verbal communication in both one-to-one and groups. Without amplification, conversation must be very loud to be understood; a 55 dB loss can cause a child to miss up to 100% of speech information without working amplification. If hearing loss is not early identified and appropriately addressed, delayed spoken language, syntax, reduced speech intelligibility and flat voice quality likely. Age when amplified, consistency of hearing aid use and success of early language intervention strongly tied to speech, language and learning development. Use of visual communication system often indicated if language delays and/or additional disabilities are present.

Use of a personal FM system will reduce the effects of noise and distance to allow increased auditory access to verbal instruction. With hearing aids alone, ability to understand in the classroom is greatly impacted by distance and noise.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

If hearing loss was late-identified and language delay was not prevented communication will be significantly affected, and socialization with peers can be difficult. Children will have greater difficulty socializing, especially in noisy settings such as lunch cooperative learning situations, or recess. Tendency for poorer selfconcept and social immaturity may contribute to a sense of rejection; peer in-service helpful.

Full time, consistent use of amplification (hearing aids + FM system) essential. May benefit from frequency transposition hearing aids depending upon loss configuration.

May require intense support in language skills, speech, auditory skill development, reading and writing.

Consultation/supervision by a specialist in hearing impairment important. Use of sign language or a visual communication system by children with substantial language delays or additional learning needs, may be useful to access linguistically complex instruction. Note-taking, captioned films, etc. are needed accommodations. Teacher in-service required.

Children & Hearing Loss: A Resource Notebook for Illinois Families 48 Children & Hearing Loss: A Resource Notebook for Illinois Families

49

SEVERE HEARING LOSS (71-90 dB) & PROFOUND HEARING LOSS (91+ dB) Possible Impact on the Understanding of Language & Speech The younger the child wears amplification consistently and concentrated effort is made by parents and caregivers to provide rich language opportunities throughout everyday activities and/or intensive language intervention (sign or verbal) is provided, the greater the probability that speech, language and learning will develop at a relatively normal rate. Without amplification, children with severe hearing loss may only hear loud noises about one foot distant from ear. When amplified optimally, children with hearing ability of 90 dB or better should detect many sounds of speech if presented from close distance or via FM. Individual ability and early intensive intervention will determine the degree that sounds detected will be discriminated and processed by the brain into meaningful input. Even with hearing aids children with severe loss are typically unable to perceive all high pitch speech sounds sufficiently to discriminate them, especially without the use of FM. The child with severe to profound hearing loss may be a candidate for cochlear implant(s). The child with profound hearing loss will not be able to perceive most speech sounds without cochlear implant(s). For full access to language to be available visually through sign language or cued speech, family members must be involved in childâ&#x20AC;&#x2122;s communication mode from a very young age.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

Depending on success of early intervention toward language development, communication may be minimally or significantly affected.

Socialization with hearing peers may be difficult. Children in mainstream classroom may develop greater dependence on adults due to difficulty perceiving or comprehending oral communication. Child may be more comfortable interacting with deaf or hard of hearing peers due to ease of communication. Relationships with peers and adults who have hearing loss can make positive contributions toward the development of a healthy self-concept and a sense of cultural identity.

There is no one communication system that is right for all hard of hearing or deaf children and their families. Whether a visual communication approach or auditory/oral approach is used, early and extensive language intervention, full-time consistent amplification use and constant integration of the communication practices into the family will highly increase the probability that the child will become a successful learner. Children with late-identified hearing loss (i.e., after 6 months of age) will have delayed language. This language gap is difficult to overcome and the educational program of a child with hearing loss, especially those with language and learning delays secondary to hearing loss, requires the involvement of a consultant or teacher with expertise in teaching children with hearing loss. Depending on hearing loss, frequency transposition aids or cochlear implantation may be options for better access to speech. If an auditory/oral approach is used, early training is needed on auditory skills, speechreading, concept development and speech. If culturally deaf emphasis is used, frequent exposure to Deaf, ASL users is important. Self-contained educational placement with other signing deaf or hard of hearing students (special school or classes) may be a least restrictive option due to access to free-flowing communication.

Support services and continual appraisal of access to communication and verbal instruction is required.

Note-taking, captioned films necessary; training in communication repair strategies helpful. In-service of mainstream teachers is essential.

Children & Hearing Loss: A Resource Notebook for Illinois Families 49 Children & Hearing Loss: A Resource Notebook for Illinois Families

50

UNILATERAL HEARING LOSS Possible Impact on the Understanding of Language & Speech Child can "hear" but will have difficulty understanding in certain situations, such as hearing faint or distant speech, especially if poor ear is aimed toward the person speaking.

Will usually have difficulty localizing sounds and voices using hearing alone. The unilateral listener will have greater difficulty understanding speech when environment is noisy and/or reverberant, especially with normal ear towards the overhead projector or other sound source and poor hearing ear towards the teacher.

Exhibits difficulty detecting or understanding soft speech from the side of the poor hearing ear, especially in a group discussion.

Possible Social Impact

Potential Educational Accommodations & Service Needs

Child may be accused of selective hearing due to discrepancies in speech understanding in quiet versus noise.

Social problems may arise as child experiences difficulty understanding in noisy cooperative learning, or recess situations. May misconstrue peer conversations and feel rejected or ridiculed. Child may be more fatigued in classroom due to greater effort needed to listen, if class is noisy or has poor acoustics. May appear inattentive, distractible or frustrated, with behavior or social problems sometimes evident.

Allow child to change seat locations to direct the better ear toward the most effective listening position.

Student is at risk for educational difficulties as ½ of students with unilateral hearing loss experience significant learning problems. Often have difficulty learning sound/letter associations in typically noisy kindergarten and grade 1 settings.

Educational monitoring is warranted.

Teacher inservice is beneficial. May benefit from hearing aid use. Will benefit from a sound-field FM system in the classroom, especially in lower grades, or a personal FM system with low gain/power.

MID-FREQUENCY HEARING LOSS or REVERSE SLOPE HEARING LOSS Possible Impact on the Understanding of Language & Speech Child can "hear" whenever speech is present but will have difficulty understanding in certain situations.

May have difficulty understanding faint or distant speech, such as a student with a quiet voice from across the classroom. The "cookie bite" or reverse slope listener will have greater difficulty understanding speech when environment is noisy and/or reverberant, such as a typical classroom setting. A mild degree of loss in the low to mid-frequency range may cause the child to miss approximately 30% of speech information, if unamplified; some consonant and vowel sounds may be heard inconsistently, especially when background noise is present. Speech production of these sounds may be affected.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

Child may be accused of selective hearing due to discrepancies in speech understanding in quiet versus noise.

Social problems may arise as child experiences difficulty understanding in noisy cooperative learning situations, lunch or recess. May misconstrue peer conversations, believing that other children are talking about him or her. Child may be more fatigued in classroom setting due to greater effort needed to listen.

May appear inattentive, distractible or frustrated.

Personal hearing aids important but must be precisely fit to hearing loss.

Child likely to benefit from a soundfield FM system, a personal FM system or assistive listening device in the classroom. Student is at risk for educational difficulties. Can experience some difficulty learning sound/letter associations in kindergarten and 1st grade classes.

Depending upon degree and configuration of loss, child may experience delayed language development and articulation problems. Educational monitoring and teacher in-service warranted.

Annual hearing evaluation to monitor for hearing loss progression is important.

Children & Hearing Loss: A Resource Notebook for Illinois Families 50 Children & Hearing Loss: A Resource Notebook for Illinois Families

51

HIGH FREQUENCY HEARING LOSS Possible Impact on the Understanding of Language & Speech Child can "hear" but will miss important fragments of speech. Even a mild loss in high frequency hearing may cause the child to miss 20%-30% of vital speech information if unamplified. Consonant sounds t, s, f, th, k, sh, ch likely heard inconsistently, especially in noise.

Will have difficulty understanding faint or distant speech, such as a student with a quiet voice from across the classroom and will have much greater difficulty understanding speech even in low background noise or reverberation is present. Many of the critical sounds for understanding speech are high pitched, quiet sounds, making them difficult to perceive; the words: cat, cap, calf, cast would be perceived as "ca," word endings, possessives, plurals and unstressed brief words are difficult to perceive and understand. Speech production may be affected. Use of amplification often indicated to learn language at a typical rate and ease learning.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

May be accused of selective hearing due to discrepancies in speech understanding in quiet versus noise.

Social problems may arise as child experiences difficulty understanding in noisy cooperative learning situations, lunch or recess. May misinterpret peer conversations.

Child may be fatigued in classroom due to greater listening effort. May appear inattentive, distractible or frustrated. Could affect self-concept.

Student is at risk for educational difficulties. Depending upon onset, degree and configuration of loss, child may experience delayed language and syntax development and articulation problems. Possible difficulty learning some sound/letter associations in kindergarten and 1st grade classes. Early evaluation of speech and language skills is suggested. Educational monitoring and teacher in-service is warranted.

Will often benefit from personal hearing aids and use of a sound-field or a personal FM system in the classroom. Use of ear protection in noisy situations is imperative to prevent loss progression from hearing damage.

Children & Hearing Loss: A Resource Notebook for Illinois Families 51 Children & Hearing Loss: A Resource Notebook for Illinois Families

52

FLUCTUATING HEARING LOSS Possible Impact on the Understanding of Language & Speech Of greatest concern are children who have experienced hearing fluctuations over many months in early childhood (multiple episodes with fluid lasting three months or longer). Listening with a hearing loss that is approximately 20 dB can be compared to hearing when index fingers are placed in ears; this loss or worse is typical of listening with fluid behind the eardrums. Child can "hear" but misses fragments of what is said. Degree of difficulty experienced in school will depend upon the classroom noise level, the distance from the teacher and the current degree of hearing loss. At 30 dB can miss 25-40% of the speech signal; child with a 40 dB loss associated with "glue ear" may miss 50% of class discussions, especially when voices are faint or speaker is not in line of vision; will frequently miss unstressed words, consonants and word endings.

Table of Contents

Possible Social Impact

Potential Educational Accommodations & Service Needs

Barriers begin to build with negative impact on self-esteem as the child is accused of "hearing when he/she wants to," "daydreaming," or "not paying attention." Child may believe he/she is less capable due to understanding difficulties in class.

Typically poor at identifying changes in own hearing ability. With inconsistent hearing, the child learns to "tune out" the speech signal.

Children are judged to have greater attention problems, insecurity, distractibility and lack self-esteem.

Tend to be non-participative and distract themselves from classroom tasks; often socially immature.

Primary impact is on acquisition of early reading skills and attention in class. Screening for language delays is necessary starting at a young age.

Ongoing hearing monitoring in school with communication between parent and teacher about listening difficulties and ongoing aggressive medical management is necessary. Will benefit from sound-field FM system or an assistive listening device in class. May need attention to speech/language, reading, self-esteem and listening skills development.

Teacher in-service beneficial.

Children & Hearing Loss: A Resource Notebook for Illinois Families 52 Children & Hearing Loss: A Resource Notebook for Illinois Families

53

In the beginning, from a medical perspective, hearing loss is simply an auditory disability. In short, it means a lack of access to sound. As you are learning, there are a variety of ways to support this. However, as you can see from the Impact of Hearing Loss pyramid, this lack of access to sound can create a compounding effect, leading to deficits in the areas of language, communication, life experiences, social, psychological, vocational, economic, and cultural aspects. Providing access to language is key. The sooner your child has access to language, the more likely your child will have fewer deficits in the areas shown within the pyramid. Language and communication are closely linked and you will learn more about them in the next section of this notebook. Again, knowledge is power. Educate yourself about all of the ways to provide language to and communicate with your child and together you will grow!

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 53 Children & Hearing Loss: A Resource Notebook for Illinois Families

54

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

54

About Communication

“I am a manager at a hospital.”

“I am a college graduate with Magna Cum Laude honors.”

“I am a college graduate with a master’s degree.”

“I am deaf.”

About Communication

~Teri Hedding

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

55

About Communication All parents want to be able to communicate with their children and have them communicate back. Communication is the act of sharing information. It means sending a message and having another person receive it. Communication is made up of many different parts including the use of eye contact, gestures, head movement, body movement and facial expressions. The first thing to do is to recognize that you and your baby are already communicating in many ways. For instance, when your baby cries, you will be able to decipher if this is a hunger cry or one associated with pain. Besides crying, your baby is attempting all forms of communication with you by using his/her eyes, smiles, voice, kicks, etc.

Developing these interactions and early conversations with your baby are the beginnings of developing language skills.

Timely development of language and communication is integral to a child’s social, emotional, and cognitive development. It is well documented that languages are not taught to young children, rather, children learn language through daily use in meaningful contexts at home and in play.

The greater the similarity between a parent’s natural language and the child’s access to that language, the greater likelihood that language will develop according to predetermined developmental milestones. Research also shows that to acquire a language, that language must be accessible, interactive, and abundant.

Using all the senses, children acquire the necessary communication skills to use language effectively with those around them. A child’s immersion into this common language becomes even more critical when one of those senses, such as hearing, is affected. Languages are expressed in many ways including spoken language, signed languages including ASL, Cued Speech, written words, pictures, and even using assistive communication devices.

Accessing communication and developing language skills are major accomplishments that should occur in the first three years of life. The effect of a child’s hearing status on communication depends on many factors, such as the degree and type of hearing loss, age of identification, degree of residual hearing, age of the start of intervention, overall general health, and family involvement. Decisions should be made as early as possible regarding how your child will be given full access to language so that the critical years for developing language are best utilized. If language development can proceed on target, deaf and hard of hearing children, in the absence of other challenges, have the potential to follow the same sequence and rate of development as children who have typical hearing.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 55 Children & Hearing Loss: A Resource Notebook for Illinois Families

56

Communication Opportunities For a child who is deaf or hard of hearing, how to best provide optimal access to language and communication has historically been a controversial issue.

Should language and communication be presented… ~ using speech and listening? ~ using a visual system? ~ using both?

Beliefs vary regarding which communication methods will provide deaf and hard of hearing children with the most complete access to language for communication and learning. New research shows that the human brain does not discriminate between visual languages and auditory/spoken languages. Every child will grow and develop using their unique abilities.

You should view choosing a communication system as a process that can change over time, based on your child’s needs.

When you are the parent of a child who is deaf or hard of hearing, you are immediately faced with questions requiring decisions: • • • •

How will my child communicate?

What kind of amplification options will work for my child?

What services are available?

How can I best learn about helping my child?

There is no one answer to these questions for every child identified with a hearing loss.

Additionally, there is no one mode of communication that is right for every child and family.

As the parent of a deaf or hard of hearing child, you are responsible for gathering information about your choices, thinking it over, and deciding on the best approach for your family. It is also important to recognize that it is ok to make changes along the way! Your child’s communication needs may change over time, therefore the communication modes used by you and your family may change as well.

As the parent, this task of gathering information on the communication opportunities available and deciding what fits for your family can be overwhelming. Making informed decisions comes with educating yourself on opportunities that are available. Learning about the options by reading this notebook, and searching out additional resources will allow you to make informed decision. Be open to everything.

• Gather information from available printed resources and ask questions of professionals that specialize in each communication method.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 56 Children & Hearing Loss: A Resource Notebook for Illinois Families

57

• Talk with deaf and hard of hearing adults.

• Talk with other parents with children who have hearing loss, and gather information from local, state, and national resources.

• Visiting a variety of educational placements that implement the different communication modes might be helpful, so you can observe older children communicating in various ways.

Searching out these resources will help you make educated decisions about what communication plan will work best for your child and your family. Listed below, and on the following pages, are short descriptions of different communication opportunities. While this is a good starting point for gathering unbiased information, keep in mind that there is no one sure decision for every child. Each family is unique and your child’s communication needs and plan can change over time.

American Sign Language/English as a Second Language (ASL/ESL) or Bilingual/Bicultural (Bi/Bi) American Sign Language (ASL) is a visual language with its own grammar. ASL is not based on English grammar. ASL uses space, direction, speed of movement, and facial expression to mark grammar and convey meaning.

• ASL has no written form and is not used simultaneously with spoken English.

• Fingerspelling (use of a manual alphabet to spell words) is actively integrated into ASL for proper names and other terms for which there are no generally accepted signs.

• A bilingual approach, using both American Sign Language and English, supports development of ASL as a child’s first language with development of English as a second language through reading, writing, and spoken language.

• Exposure to ongoing fluent ASL models is considered integral to the success of this approach.

• Learning a second language as an adult can be difficult, and as a result, most hearing parents are not immediately fluent in ASL. • Therapists working with families will be able to provide instruction and support to learn this language.

• The child and family need access to Deaf adults who are fluent in ASL and intensive training in American Sign Language is needed to immerse the child in language.

Supporters of this approach believe that visual language development is crucial to a deaf child’s language, cognitive, social, and emotional growth. This approach supports ASL as a valid and valuable language that has proven successful for developing an avenue for communication, life

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 57 Children & Hearing Loss: A Resource Notebook for Illinois Families

58

success, and literacy development for many Deaf individuals. This approach supports the belief that a child can most easily learn language visually through ASL, and then use ASL to learn English. Supporters of this approach understand that deaf children have a wide variety of potential regarding auditory and speech skill development. They believe that development of auditory and speech skills will hold a different importance for each child and their family.

For more information on ASL/English as a Second Language, you can visit www.gallaudet.edu/clerc-center/info-to-go/asl.html.

Listening and Spoken Language The mission of a Listening and Spoken Language Specialist (LSLS) is to work with infants and children who are deaf or hard of hearing and their families to help these children develop their hearing and listening potential to communicate through spoken language. With powerful hearing aids, cochlear implant(s) or both, deaf or hard of hearing children can have increased access to spoken language through listening. The following are important factors that support listening and spoken language: • Early identification of the child’s type and degree of hearing loss • The fitting of hearing aids as soon as possible after the loss has been identified • Consistent use of amplification throughout the child’s waking hours • Aggressive audiological management to ensure that the child has access to spoken language • Guiding parents and caretakers in providing optimal hearing, listening and speech and language stimulation through positive play based interactions • Following the typical developmental sequences in listening, spoken language and literacy in the developing infant and child • Providing children with hearing loss with an inclusive education in the regular classroom environment when appropriate A LSLS certified professional may work directly with a child or student or their family. These professionals support and coach parents and caregivers in their role as the child’s most important teacher of language. There are two LSLS certificates:

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 58 Children & Hearing Loss: A Resource Notebook for Illinois Families

59

~ LSLS Certified Auditory-Verbal Therapist (LSLS Cert. AVT): Works one-on-one with children and families in all intervention sessions ~ LSLS Certified Auditory-Verbal Educator (LSLS Cert. AVEd): Involves the family and works directly with children in individual, group, or classroom settings Thanks to today’s advances in hearing technology for infants and young children, early identification and support from qualified professionals, families are more confident than ever their child can develop listening and spoken language.

For more information on Listening and Spoken Language, you can visit www.agbell.org.

Cued Speech Cued Speech is a visual mode of communication in which mouth movements of spoken language combine with “cues” to make the sounds (phonemes) of traditional spoken languages look different. Cueing allows users who are deaf, hard of hearing, or who have language/communication disorders to access the basic, fundamental properties of spoken languages using vision.

Basically, a person cues the sounds (phonemes) of spoken language by using either distinct hand gestures or “hand shapes” in any one of four distinct locations near the mouth. The handshapes represent consonant phonemes and the locations near the mouth represent vowel phonemes. You then cue consonant/vowel pairs in synchronization with the mouth movements of speech. Speaking aloud is not required. With or without hearing any sound at all, the deaf or hard of hearing person “sees” exactly what is being said with 100% access, clearly and unambiguously. Cued Speech does not require the use or hearing or the use of speech. It is only required that the user show the mouth movements that match the cues.

• Cued Speech provides a deaf or hard of hearing child with the same level of access to spoken language as a hearing child and, as supported by research, enables that child to develop age-appropriate language and literacy skills.

• Although providing access to sound is not required to convey language via Cued Speech, most supporters of Cued Speech encourage the use of the latest technology, including cochlear implants where appropriate, to provide the child with optimized chances of developing good listening and speaking skills.

• Cued Speech also supports lip-reading skills.

• Cued Speech has proven to be a valuable tool for parents, teachers, and speech therapists to help children develop and improve their listening and speaking skills. The child knows exactly what sounds to listen for in a word already acquired visually via Cued

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 59 Children & Hearing Loss: A Resource Notebook for Illinois Families

60

Speech – and knows exactly what sounds to speak, as well. The use of Cued Speech allows the child to internalize a phonemic model in much the same way a hearing child does. This phonemic awareness is a key component of literacy.

• It typically requires about 10-20 hours of instruction to learn the entire system which, in English, is comprised of 8 different hand shapes and 4 different vowel locations. Fluency develops based on the amount of usage.

• Cued Speech has been adapted to over 62 different spoken languages.

• Cued Speech can be used with a child at home and/or at school, but studies have shown that children do best when it is used at home and at school – although use at home or school alone is better than not using any at all.

For more information about Cued Speech, you can visit www.cuedspeech.org.

Total Communication This philosophy focuses on the use of all modes of communication: manual, visual, and auditory – spoken language, sign language, Cued Speech, listening, fingerspelling, writing, gestures, visual imagery (pictures), facial expressions, etc., to facilitate language development and communication. The sign language used within Total Communication closely resembles spoken English grammar (sign supported speech) as opposed to ASL, which uses a different grammar system. The use of amplification (e.g., hearing aids, cochlear implants, FM systems) is expected.

• The intention of Total Communication is to provide a child with ANY modalities necessary to support them in developing language.

• Therapists work with families to develop skills necessary to present information to their children using all modalities.

• The most common implementation of Total Communication has become Simultaneous Communication. Simultaneous Communication involves signing and speaking at the same time. The signs used are usually an attempt to match the spoken message. The child receives language through the combination of audition, sign language, and spoken English and expresses language through a combination of sign language and spoken English.

• Parents and family members should learn the chosen sign language system and must consistently sign while they speak to their child.

• Consideration should be given to the concern that the spoken message a child receives and the sign language used may not completely match. Presenting incomplete information to a child in either a spoken or signed version may result in difficulty developing a solid language base in either sign or spoken language. Difficulties may also Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 60 Children & Hearing Loss: A Resource Notebook for Illinois Families

61

arise with the variety of sign language systems used throughout the public school systems.

Supporters believe that use of Total Communication will provide a child with access to a visual language base, and at the same time encourage development and use of spoken language. It is believed that if a child is provided with access to all communication modes, that language and communication skills will develop and positive social-emotional development will be promoted.

Communication with Individuals who are Deafblind A person who is deafblind may use many of the oral/aural or visual/sign modes described for persons who are deaf depending on their vision loss, onset and progression of sensory losses, and any additional intellectual/educational challenges.

If the vision and hearing loss are severe, the addition of tactile modes may be necessary. With any of the sign systems, the child may use either tracking or tactile sign language. If the child has tunnel vision or needs the speaker near, tracking will be used. With tracking, the child holds onto the signer’s wrists to feel where the signer’s hands are, and in that way, the child can see what is signed. The child can also help move the signer’s hands into the best area within their visual field. With tactile sign, the child’s hands are placed over the speaker’s hands to feel the signs. If this technique is used, all information which is normally visual (facial expressions and body language) will need to be expressed on the hands. If fingerspelling is used, the child’s hand is placed over the speller’s hand to read the fingerspelling.

Articles on deafblind interpreting and modifications to sign language for tactile sign can be found at: https://nationaldb.org/library/list/20, http://www.deafblind.com/slmorgan.html, http://www.projectsalute.net/Learned/Learnedhtml/TactileSigning.html, and http://www.protactile.org.

Pro-Tactile is a movement within the DeafBlind community that incorporates language, awareness, and empowerment. The three tenets are Philosophy, Method, and Attitude. Of notice to most adopters of Pro-Tactile is Method. Method incorporates tactual techniques to provide information, such as backchanneling, Tactile ASL (TASL), and mapping. These methods provide the DeafBlind receiver with information that enables them to make informed awareness and decision-making choices. For example, backchanneling may provide information about activities occurring in a room, such as group laughter and other visual cues that a sighted person may incorporate in how they react interpersonally and in group settings.

Mapping is a method where the layout of a room is drawn on the DeafBlind person's body (arm, back, etc.). And TASL establishes a mode of communication where VASL (Visual ASL) may Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 61 Children & Hearing Loss: A Resource Notebook for Illinois Families

62

not be adequate when used with tactile signing. These methods, in turn, provide the awareness and information that supports the Philosophy and Attitude tenets. When a DeafBlind person is empowered with information, the DeafBlind person is then able to make independent decisions and take charge in ways that affect them both immediately and long-term. More information about TASL can be found in Terra Edward's dissertation arguing that TASL is, indeed its own language. Videos that explain much of the method can be found at www.ProTactile.org.

(Bryen Yunashko, National DeafBlind Advocate).

If the child has lost vision and hearing after being able to read, Print on Palm may be used for communication. Using the child’s hand as a base, the speaker draws in capital block letters on the child’s palm with an index finger. The use of a raised alphabet card or an alphabet glove may aid in communication if the student knows no sign language. Information on these systems is available at: http://www.hknc.org/Guidelines.html.

Braille may become an important tool in communication if the child lost vision first, and later acquired hearing loss. The knowledge of braille would be important in order to use various low-tech and high-tech communication devices. Examples include Braille/Print Alphabet Cards and the Deafblind Communicator.

An overview of deafblind communication options can be found at: http://aadb.org/factsheets/db_communications.html.

For information on any aspect of deafblindness contact the Philip J. Rock Center and School, 818 DuPage Blvd., Glen Ellyn, IL 60137; 630-790-2474; or fill out the email form at http://www.philiprockcenter.org/contact-us Questions to Consider When Deciding on a Communication Option The following is from the Indiana Parent Resource Guide: 1. Is the communication option chosen in the best interest of your child and family?

2. Does it allow your child to have influence over his/her environment, discuss his/her feelings and concerns and participate in the world of imagination and abstract thought?

3. Does the communication enable all your family to communicate with your child? If not, where can you get support for teaching family members how to communicate with your child?

4. Does the communication enhance your child’s relationship with other family members? It should promote enjoyable, meaningful communication among all family members and enable your child to feel part of your family and know what is going on.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 62 Children & Hearing Loss: A Resource Notebook for Illinois Families

63

5. How is your child going to be able to communicate with peers and the community?

6. Do you and your family understand the commitment this choice will require?

7. Will your child arrive at school with language skills for thinking and learning to read?

Questions to Ask When Choosing a Provider to Help You & Your Child 1. What experience do you have with children with hearing loss? What specialized training do you have? What are your licenses, certifications, and/or credentials?

2. What is your philosophy regarding communication for a child with a hearing loss?

3. What are the long-term goals of the services you recommend?

4. How do you evaluate the effectiveness of your services?

5. What is the parentâ&#x20AC;&#x2122;s role when you provide services?

6. How do you teach us to communicate with our child between visits? Will I be able to carry on activities with my child based on your suggestions or resources?

7. What supports do you offer families?

8. What is the impact of services on the siblings and extended family?

9. What is your definition of success for children with hearing loss?

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 63 Children & Hearing Loss: A Resource Notebook for Illinois Families

64

Helping Your Child to Communicate Remember, you and your child are already communicating. Continue to interact and enjoy your baby!

The following are suggestions on how you can gain your child’s attention without using cues that require them to use their hearing: ✓ Get on the same eye level as your child. If they are lying on the bed or floor, get down there with them. ✓ Tap your child gently on the arm. ✓ Wave your hand within their field of vision. ✓ Lightly shake his/her bed or chair. ✓ Stomp on the floor. ✓ Turn lights on and off quickly.

The following are some ways that you can keep your child’s attention: ✓ Face your child and maintain eye contact. ✓ Create a visual world - use gestures, facial expressions (to convey happiness, sadness, sleepiness, questions, etc.), body movements, and sign language to explain the world to your child. ✓ Make a scrapbook of your child’s favorite people and things to talk to him/her about. ✓ Point out things of interest to your child (“I hear the dog.” “There’s Daddy!”). ✓ Talk to your child – although your child may or may not be able to hear you, he/she will learn to read your facial expressions and possibly learn to recognize words on your lips when you talk. ✓ Play, play, play. Anything that engages the child. Copy facial expressions, teach him/ her to blow raspberries, play peek-a-boo. ✓ Move the child’s legs and engage in a variety of touching behaviors such as tapping, stroking, and tickling. Play body games such as patty cake, peek-a-boo, etc. ✓ Share picture books with them (more will be discussed in the section titled Literacy).

The following are some ways that you can make the interaction easier on your child: ✓ Clear the visual path between you and the child. Keep your hands away from your face so the child can see your eyes and lips.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 64 Children & Hearing Loss: A Resource Notebook for Illinois Families

65

✓ Be aware of light sources and the impact of shade – do not stand in front of an unshaded window or in front of a lamp that is on. The light from these sources will give a shadow effect and make it difficult for your child to see you. ✓ Be aware of competing background noise. When you are talking to your child, you may want to turn off the radio or television. Stay close to your child when talking.

Building conversations expands the child’s language base: Conversation is a lot like a game of volleyball. The rules are simple – you pass the ball back and forth, taking turns. Everybody gets a chance to serve the ball and players try to keep the ball in the air. When a child cries or points, he/she is serving a ball to you. You respond by turning to him/her and maybe raising your eyebrows and say, “What do you want?” He/she then communicates again. Turn taking is an important part of communication. You want the child to learn that when he/she gestures or vocalizes, you will respond. By being a responder, you are shaping the child’s actions into true language. When you respond to the child’s signals, it is important that you use effective communication, not simply give the child what he/she wants.

Use the following tools to develop “turn taking” and conversation: Be a good listener and observer. Listen for vocal play and watch the child and become aware of the ways he/she is trying to communicate. Look for gestures, reaching, tugging, pointing or other body movements that can communicate meaning. Pay close attention to your child’s facial expressions, smiling, fussing, crying, furrowing eyebrows, and eye gaze. Remember that there are many ways for your child to communicate his/her needs. Watch, listen and respond!

Also, tune into situational or contextual clues to figure out what the child is trying to communicate. When your child goes to the kitchen, maybe he/she is hungry. Follow your child’s lead and comment on his/her world. It is much easier to communicate with someone if they are interested in what is taking place. As your child explores and plays, comment on what is taking place or attach labels for objects that are being played with. For instance, sign, say or cue “sticky” if your child is exploring something sticky or “that’s Muffy” or “black cat” if your family pet walks by. You will probably find that your child will be interested in looking at what you have to say and your signs and cues will start to make more sense if you match his/her interests. And, be patient. You and your child will continue to strengthen your bond as you learn to communicate together.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 65 Children & Hearing Loss: A Resource Notebook for Illinois Families

66

Encourage your child to keep the conversation going by: ✓ Smiling, clapping, nodding your head up and down, showing two thumbs up. ✓ Use encouraging words, signs, cues, and/or gestures such as: "Yes, right, good, thank you." ✓ Rephrase what your child is communicating; for instance, if they point at the bear you ✓ could sign, gesture, cue, or say, “The bear is big”. ✓ Act as if the child’s signal has meaning and respond with signs, gestures, actions, or words. ✓ Imitation is a good way to respond. If you can’t understand the child’s vocalization, sign, cue, or gesture, then imitate it, smile, and indicate “yes!”

Be expressive. Use your face and body to support your words. For instance, if you are sleepy you could sign “sleepy” or you could yawn and lay your head on your pretend pillow. When signing, cueing, or gesturing “no” you should not be smiling. This might confuse the child and send a mixed message.

Draw your child’s attention up to your face when you are talking to him/her. If your child is looking at an interesting toy that is lying in front of him/her, pick it up and put it close to your face before you begin talking about it. You can also lower your face to be on the same level with your child.

Sometimes exaggerated facial expressions help make meaning clearer for your child. It may feel very awkward, silly, or unnatural to exaggerate your facial expressions for your child. The exercises listed below may help you feel more comfortable: ✓ During a meal or some other time when the family is together, do all your communication with facial expression and gestures (no voice or sign). ✓ Play charades. Act out people or events that have emotions attached, such as a surprise birthday party. ✓ Play follow the leader – everyone must copy the leader’s expression. A large mirror makes it more fun so you can see each other and yourself all at once. ✓ Produce facial expression that shows emotion: Fear, sadness, surprise, delight, anger, terror, shock, smelling something awful, doubt, excitement, etc. You can match the facial expression and word or picture together.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 66 Children & Hearing Loss: A Resource Notebook for Illinois Families

67

Remember that your child has other senses that may be more acute because of their hearing loss. Help develop these other senses by: Offering toys that light up and vibrate.

Providing different fabrics and textures – let your child develop the sense of touch by allowing them to explore all types of fabric, foods, paint, clay, etc.

Making drums out of empty oatmeal containers, coffee cans, pots, and pans. Your child may not hear the noise but he/she can feel the vibrations. ✓ Placing mirrors around the house at your child’s eye level. There are some on the market that are not breakable. ✓ Balloons will pick up vibrations – offer these to your child under close supervision since broken balloon pieces can be swallowed. ✓ ✓ ✓ ✓

Early Literacy Being literate involves knowing how to read and write. To be successful in school and life in general, developing literacy skills is extremely important. Children who are deaf and hard of hearing may be dependent on the written word to learn much about the world.

First children learn to read and then they read to learn. In addition, children will use the written word to communicate their thoughts.

Strong language development and communication with your child provides a great foundation for literacy. Through your daily contact with your child he/she is learning words, thus language. Attaching words and descriptions of activities during your everyday routines (eating, diaper changing, baths, play, shopping) gives your child the building blocks he/she will need to become literate. Language, whether it is spoken, signed, or cued, whether it is English, French or American Sign Language, is learned through interaction with other people. Children who are deaf and hard of hearing have the same aptitude for language development as hearing children do. However, they may interact with their world visually with their eyes instead of auditorily with their ears, depending on their level of hearing loss and use of assistive devices, as well the choices you and your family make. In addition to listening and speaking, they watch and often gesture to make their intentions known. So, language, reading, and writing skills develop at the same time and are closely linked. Early literacy development is a continuous process that

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 67 Children & Hearing Loss: A Resource Notebook for Illinois Families

68

begins in the first years of life. The skills develop in real life settings through positive interactions with written materials, language, and other people.

Examples of early literacy behaviors: ➢ Book handling – Letting children physically manipulate and handle books are some of the earliest stages of literacy. Children will learn how the pages feel and how to turn them. They will learn to hold the book right side up. ➢ Looking & recognizing – Behaviors related to how children pay attention to and interact with pictures in books, such as gazing or laughing at a favorite picture. Behaviors such as pointing to familiar objects show recognition and understanding of pictures in books. ➢ Picture and story comprehension – Behaviors that show children’s understanding of pictures and events in a book, such as initiating an action seen in a picture or talking about the events in a story. ➢ Story reading behaviors – Behaviors that include the children’s verbal and signed interactions with books and their increasing understanding of print in books, such as babbling in imitation of reading, page turning or running their fingers along printed words.

Here are some strategies you can use to promote early literacy: ➢ ➢ ➢ ➢ ➢ ➢ ➢

Emphasize real world activities with associated language.

Talk, sign and/or cue with your child and let him/her see conversations with others.

Provide positive encounters with reading and reading material.

Expose your child to a variety of print formats.

Turn on the closed captioning on the TV. Read to yourself – if your child sees you reading, they will model it.

Give access to books and writing materials.

READ Kits Program: Fostering a Love of Books Literacy is defined as the ability to read and write. Deaf, hard of hearing, and deafblind children struggle with incidental learning, which occurs from overhearing the world around us. Incidental learning is a big component of language development, which supports literacy.

A key goal of CHOICES for Parents is to support parents in the early stages of literacy development with their deaf or hard of hearing child and foster a love of books. With this in mind, we developed the READ Kits Program targeting children ages 0-3.

The READ Kits include a book, materials to go with the book, an activity sheet and access to Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 68 Children & Hearing Loss: A Resource Notebook for Illinois Families

69

the Reading Strategy Videos, which are available below for you to view. Check out is free and done through US mail, postage free.

As a parent/caregiver of a child who is deaf, hard of hearing, or deafblind, you can check out a READ Kit and use the kit to support reading with your child. READ Kits include many popular childrenâ&#x20AC;&#x2122;s books, such as Good Night Moon and Brown Bear, Brown Bear, What Do You See? Also available are YouTube videos that discuss the following strategies to use, regardless of communication mode: Fostering a Love of Books I: Reading to Your Child Who is Deaf, Hard of Hearing, or DeafBlind Introduction Strategy #1: Creating a Reading Environment Strategy #2: Positioning Your Child Strategy #3: Engaging Your Child Strategy #4: Making it Language Rich Fostering a Love of Books II: Reading to Your Child Who is Deaf, Hard of Hearing, or DeafBlind Strategy #1: Checking for Understanding Strategy #2: Expanding Language Strategy #3: Turn Taking Strategy #4: Developing Vocabulary For more information and the YouTube links, go to www.choicesforparents.org/literacy The READ Kits Program is made possible by a grant from the Oberkotter Foundation and is managed by CHOICES for Parents.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 69 Children & Hearing Loss: A Resource Notebook for Illinois Families

70

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 70 Children & Hearing Loss: A Resource Notebook for Illinois Families

71

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 71 Children & Hearing Loss: A Resource Notebook for Illinois Families

72

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 72 Children & Hearing Loss: A Resource Notebook for Illinois Families

73

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 73 Children & Hearing Loss: A Resource Notebook for Illinois Families

74

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

74

Hearing Technologies

“I am a mother of four children.”

“I am a lover of music and dance.”

“I am an umpire and softball player.”

“I am deaf.” ~Kris Winkler

Hearing Technologies

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

75

Hearing Technologies Importance of Hearing Aids No child is too young to be fit with hearing aids! Even infants can be fit with hearing aids.

Early hearing aid use increases the chances that a child with hearing loss will develop his listening and language skills.

A child born with normal hearing typically begins using single words at around 12 months of age. In reality, a great deal of listening and language development occurs before children speak their first words. Hearing loss delays language development because spoken language depends on the ability to hear speech. Language delay can be minimized by fitting hearing aids as soon as possible once the hearing loss is diagnosed.

It is critical that the audiologist is familiar with the special needs of fitting hearing aids on infants and young children. A pediatric audiologist is someone who specializes in childrenâ&#x20AC;&#x2122;s hearing needs.

What is a hearing aid?

A hearing aid is a device that amplifies sound. It consists of a microphone that picks up the sound, an amplifier that makes the sound louder, and a speaker (receiver) that delivers the sound to the ear. A hearing aid is an effective tool to provide your child with access to sound, but it does not correct the hearing loss.

What are the benefits of hearing aids?

Hearing aids compensate for the hearing loss by amplifying specific sounds through the ear.

Ideally, hearing aids will provide an amplified signal enabling detection of all speech sounds and conversational speech to be heard at a comfortable level. The success of achieving this goal can depend on the degree and configuration of the hearing loss.

When severe-to-profound hearing loss is present, hearing aids may not be able to amplify speech to levels where it can be understood clearly. However, hearing aids may still improve awareness of speech and environmental sounds as well as provide helpful additions to visual and facial cues. In this case, a child may be referred for an assessment for cochlear implantation. Please refer to the cochlear implant section for more information.

Hearing aids do not restore hearing to normal and may not be effective in all listening situations such as noisy backgrounds or listening to speech at a distance. In more difficult listening

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 75 Children & Hearing Loss: A Resource Notebook for Illinois Families

76

situations, an FM/DM system or other Hearing Assistive Technology may be beneficial (see Hearing Assistive Technology section).

How do you fit a child with hearing aids?

Once the hearing loss is determined, hearing aids can be selected.

First, it is necessary to have medical clearance from your child’s pediatrician or ear, nose and throat doctor before the hearing aids can be fit by the audiologist. Most pediatric facilities can provide this medical consultation for you.

Second, once medical clearance is obtained, the audiologist will take earmold impressions of the child’s ears. The earmolds are made from this impression to design a custom-fit mold to be used with a behind-the-ear hearing aid or a custom hearing aid like an in-the-ear hearing aid.

For some older children, the audiologist may suggest using a more universally fit dome rather than a custom earmold.

Then hearing aids are selected by style and type. This will be determined by the degree and configuration of the hearing loss. The audiologist will work with the family to choose the best type and style of hearing aids for your child.

Your child will be fit with the hearing aids, with the benefits of the hearing aid validated and verified by the audiologist.

What are the different styles of hearing aids?

There are many different styles of hearing aids that vary in the way the components are designed and housed. The most common types used with children are listed below.

A Behind-the-ear hearing aid, courtesy of Phonak

Behind-the-ear hearing aids, also called BTEs, are hearing aids that fit behind the ear. The hearing aid is connected to a custom earmold or dome that is fit to your child’s ear. The earmold or dome holds the hearing aid in place and directs the amplified sound down your child’s ear canal. Many young children and especially babies are fit with this style. This type of hearing aid is very durable and the earmold is replaced often as your child’s ear grows. It is necessary for the earmold to fit tightly in the ear to prevent acoustic feedback, which is the high-pitched whistling that occurs when the earmold is loose or not correctly in the ear. BTEs can be fit to any degree or type of hearing loss as long as the external ear and ear canal are fully formed. Both earmolds and the hearing aids themselves are available in a variety of Behind-the-ear hearing aids, image colors. courtesy of Oticon

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 76 Children & Hearing Loss: A Resource Notebook for Illinois Families

77

Children often learn to accept their hearing loss more easily when they are able to choose a color THEY like, rather than clear or beige, as this sends a positive message of acceptance to the child. It is also very important to set the tone for acceptance of hearing aids. If we make comments like “Your hearing aids are so tiny you can’t even see them!” or “I love how the hearing aid blends into your hair!” what are we implying?

In-the-ear hearing aids, also called ITEs, are hearing aids that fit inside the external ear. All the components are built into a custom hard shell that is made from an earmold impression.

ITEs can be made in a variety of sizes, some fit deep in the ear canal. ITEs are generally not used in children. Their ears are too small to handle the size of the hearing aid components and the size of their ears are continually growing. ITEs can be fitted in older children with mild or moderate degrees of hearing loss. ITEs are limited in the amount of amplification they provide and therefore are not appropriate for children with moderate-severe losses or profound losses.

Safety is the overriding concern for the choice of BTE vs. ITE hearing instruments for children.

BTE hearing instruments can be used with earmolds made of soft material as a safety precaution with physically active children.

In general, BTE hearing instruments also require fewer repairs than ITE hearing instruments, and they are more compatible with assistive devices such as FM systems. Although assistive devices are not typically used with infants and toddlers, many children with hearing loss use FM systems and other assistive devices when they begin school.

Bone conduction hearing aids are an appropriate instrument to use for children that have conductive type hearing losses particularly when the outer ear and/or ear canal are not present (closed) or abnormally small or if the child has chronic ear infections with drainage. Bone conduction aids use an oscillator placed behind the ear to stimulate through the bone. For younger children, this system is usually worn on a softband (headband) and for older children, families may elect to have the bone conduction hearing aid surgically implanted.

What is the technology inside a hearing aid?

Hearing aids employ digital technology, in which incoming acoustic signals are converted to digital signals. This “digitalization” makes it possible to precisely analyze and filter the signals through a computer software program. The signals can be processed in one or more frequency channels like an equalizer on a stereo system.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 77 Children & Hearing Loss: A Resource Notebook for Illinois Families

78

How to verify the hearing aids are fitted appropriately…

Audiologists may use one of several assessment methods when evaluating hearing instruments for children. Regardless of the technique used, the goal is to enable conversational speech to be heard at a comfortable level. These assessment methods may include: ▪ Probe-Tube Microphone Testing – During probe-tube microphone testing, a small piece of tubing (about the size of a thin spaghetti strand) is placed in the ear next to the earmold and connects with equipment to generate/measure responses. The amplification provided by the hearing instrument is then measured while in place in the ear. The measured response is evaluated to estimate the instrumented benefit. Adjustments to the hearing instrument are made as needed.

▪ Real-Ear-to-Coupler-Difference (RECD) Measures – In RECD testing, a similar procedure is performed. The effect of the child’s ear and ear mold are measured without the hearing instrument. The hearing instrument is evaluated separately and its response added to the RECD measurement. This allows different hearing instruments and settings to be compared without having to test each one on the child. While the importance of RECD testing has been proven, a child may not be able to initially tolerate the amount of gain that the computer deems appropriate. In this case, an audiologist may decrease the gain and gradually help work up to the real-ear targets. It is important to use both objective and subjective measurements to appropriately fit a child with hearing aids.

▪ Behavioral Testing – When probe-tube measures cannot be completed, behavioral testing methods can be used to assess a child’s performance with hearing instruments.

The softest level at which a child responds to sound while wearing the hearing instrument is compared to the softest level of response without the hearing instrument to estimate instrumented benefit. This type of evaluation does not require the placement of measuring equipment on the child but provides less comprehensive information.

NOTE: Probe-tube microphone or RECD measurements are usually the methods of choice for fitting hearing instruments for children for several reasons. First, they allow hearing instrument performance to be measured at typical speech levels so that performance in conversational situations can be predicted. Second, they allow direct measurement of the maximum level of sound provided by the hearing instrument to the child’s ear. The hearing instrument then can be adjusted to a safe and comfortable level. Third, they provide more comprehensive information and can be completed quickly.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 78 Children & Hearing Loss: A Resource Notebook for Illinois Families

79

Additional facts about hearing aids Hearing aids do not last forever â&#x20AC;&#x201C; it is likely they will need to be replaced in 5 to 7 years.

Reasons they may need to be replaced include everyday wear and tear of the hearing aids. They need to be taken care of and may need to be repaired out-of-warranty once or twice. The main reason for replacing hearing aids is because technology is always getting better. By the time 5 years have passed, there will be better hearing aids on the market.

Health insurance does not always cover hearing aids. It is likely there will be some out of pocket expenses. Your audiologist should provide you with information on the cost of the hearing aids, ear molds, other accessories, and office visits.

There are many manufacturers of hearing aids. The general features are the same, but the packaging and philosophy for technology vary. Most pediatric audiologists work with several companies that can supply the appropriate hearing aids for your child.

Cochlear Implants What is a Cochlear Implant?

A cochlear implant is a proven medical option for children with severe to profound hearing loss who receive little or no benefit from hearing aids. Cochlear implants can provide better sound detection for greater speech understanding in children. Unlike hearing aids, that increase the volume or loudness of sound, cochlear implants move beyond the damaged parts of the inner ear (called the cochlea) and send sound information directly to the hearing nerve through electrical signals. While a cochlear implant doesnâ&#x20AC;&#x2122;t cure deafness, it does offer a life-enhancing option.

Cochlear implants have been approved for use in children since June 1990. As of December 2012, approximately 38,000 children in the United States have a cochlear implant. Todayâ&#x20AC;&#x2122;s cochlear implant technology has evolved through more than 20 years of research into a highly advanced system that sends in-depth sound information through multiple channels of stimulation.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 79 Children & Hearing Loss: A Resource Notebook for Illinois Families

80

By improving hearing, cochlear implants can make communication easier. Cochlear implants give many children a chance to develop spoken language through improved hearing and they have also been shown to have a positive impact on language in general â&#x20AC;&#x201C; both spoken and sign.

Hearing through a Cochlear Implant A cochlear implant changes speech, music and environmental sounds into electrical signals and sends these signals to the hearing nerve and then to the brain where sound is heard. All cochlear implant systems have Flex Internal Device (image provided inside and outside parts or components. The outside courtesy of MedEl) components include a microphone, a speech processor or sound processor (choice of body worn or behind the ear), and a transmitter with a magnet. The inside components include a receiver/stimulator (high tech electronics) and an electrode array.

The electrode array is placed into the inner ear (cochlea) and contains many electrical contacts (from 12 to 22 electrode contacts depending on the implant manufacturer), which stimulate the hearing nerve fibers and send electrical signals to the brain where sound is heard.

EXTERNAL DEVICE Cochlear NucleusÂŽ 5 Sound Processor

Table of Contents

Photos provided courtesy of Cochlear Americas

Children & Hearing Loss: A Resource Notebook for Illinois Families 80 Children & Hearing Loss: A Resource Notebook for Illinois Families

81

How it works: The cochlear implant system works in the following way: 1. Sounds are picked up by a small, microphone located at the front part of the ear level (behind-the-ear) speech processor.

2. The speech processor changes the sound into coded signals.

Cochlear Nucleus 5ÂŽ Remote Assistant 3. The speech processor sends these signals to the transmitting coil.

4. The transmitting coil sends the signals across the skin to the cochlear implant that is under the skin.

5. The cochlear implant sends the signals to the electrode array inside the inner ear or cochlea.

6. The electrode array stimulates the hearing nerve fibers in the cochlea.

7. The electrical sound is sent from the cochlea to the hearing nerve and to the brain, where it is heard as sound.

What are the benefits?

The main benefit of a cochlear implant is improved access to auditory information, especially speech sounds.

Children as young as 12 months of age with a profound hearing loss in both ears, who receive little or no benefit This is one example of an implanted device. from hearing aids (usually determined by a trial period Image provided courtesy of Advanced Bionics. using two hearing aids), may hear better with a cochlear implant. Older children, over 2 years of age, with severe to profound hearing loss in both ears may also benefit from a cochlear implant. Studies have shown that cochlear implants can provide much more benefit than hearing aids for children with severe to profound hearing loss.

Children who receive a cochlear implant early in life, with appropriate auditory and speech therapy, educational programs and family support develop speech and language at a rate that is similar to hearing children of the same age. Many of these children are able to go into mainstream school environments with hearing children.

Some children will receive bilateral cochlear implants or one cochlear implant on both sides. A child might receive simultaneous cochlear implants (both ears are implanted on the same surgery day) or sequential cochlear implants (one cochlear implant is inserted first and a second one is inserted later).

Table of Contents

82

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

81

Although cochlear implants can’t restore normal hearing, according to parents of children with cochlear implants, they make major gains in sound awareness and speech understanding. After six months of using the cochlear implant, many children respond to their names in quiet environments and recognize common sounds in the classroom. Most children with implants continue to improve for several years after receiving their implant.

With a cochlear implant, some children may have a better awareness of sounds in the environment, from a car approaching, a friend’s whisper, to a shout from near or far away.

The success of a deaf child’s speaking and hearing with a cochlear implant depends on many things, including how long the child was deaf before being fit with hearing aids and receiving sound. The earlier hearing loss is recognized and the sooner a child receives a cochlear implant and receives therapy, the greater chance a child has of gaining speech and language at the same level as hearing children of the same age.

How do I know a cochlear implant will benefit my child?

Although most general doctors and audiologists are familiar with cochlear implants, some may not be up to date with information on who can benefit from cochlear implants. If you are considering a cochlear implant for your child, you are encouraged to go to a professional with cochlear implant experience in children. Only your child’s cochlear implant audiologist and surgeon can help you decide if your child will hear better with this technology. Your child will undergo a hearing test and medical exam which normally takes a couple of hours. The hearing test will determine how much hearing loss your child has and how well your child can hear with hearing aids. Other tests such as x-rays, CT scans or MRIs are often taken to look at your child’s cochlea or inner ear.

Centers who have experience working with children may be able to put you in touch with other parents who have decided to have their child implanted. This is a great chance for parents to share their experiences with others. Many parents of a child with an implant said talking to other parents was very helpful in their decision-making process. The cochlear implant manufacturers may also be able to connect you with other parents who can share their experiences with you.

To locate a center that works with cochlear implants, you may want to ask your child’s primary care physician, audiologist, or ENT. It may be necessary to do some research on your own to find a center that meets the needs of your child. Cochlear implant manufacturers are a good resource for locating a center as they all maintain a list of implant centers worldwide. Parents of children who have been implanted are a good resource as well.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 82 Children & Hearing Loss: A Resource Notebook for Illinois Families

83

Additionally, as parents, you should have a clear understanding of the benefits and limitations of a cochlear implant, and be prepared to devote the necessary time for the pre-implant evaluations and post-operative follow-up services. Some cochlear implant centers ask for assurance from families that the child’s home and educational environment will stress listening and spoken communication to ensure the best possible results.

It is important for you to visit and ask for advice from a cochlear implant center during your child’s infancy, rather than waiting until your child is 12 months old or older before scheduling the first visit. Visiting a center early will give you a chance to meet with other families, get the names of therapists, complete the hearing aid tests, and determine if your child will benefit from a cochlear implant.

What happens during surgery?

Cochlear implant surgery is typically performed while your child is asleep, under general anesthesia, and takes about 1 ½ to 2 ½ hours per ear. The procedure is often done in an outpatient setting, but may also be done as an inpatient. The day of surgery the area of the head where the cochlear implant will be placed is shaved (only a small amount of hair Photo provided courtesy of Cochlear Americas© 2009 Cochlear Americas removal is usually required). The surgeon makes a small cut behind the ear and then forms a small hollow in a bone behind the ear to hold the cochlear implant in place. The cochlea, which is already adult-size at birth, houses the electrode array. The electrode array is fit into the cochlea through the opening the surgeon made through the mastoid bone into the inner ear. The small cut is then closed and a bandage is placed over it. The surgery carries the normal risks associated with ear surgery requiring general anesthesia.

Activation of the implant and device fitting Around three to four weeks after the surgery you and your child will return to the clinic for the “initial stimulation,” “turn on,” or “hook-up” of the implant and fitting of the speech processor.

It is during this time that your child will hear his/her first sounds with the new implant. You and your child will meet with the audiologist to program the speech processor. The audiologist will use a computer with special software for programming the speech processor.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 83 Children & Hearing Loss: A Resource Notebook for Illinois Families

84

Once the programming is finished, your child can take the implant system home.

Your audiologist will work with you to develop a schedule of follow-up visits for “fine tuning” the speech processor.

Implant programming is performed a lot more often during the first months of implant use, then there will be fewer visits required later. Typically, these visits occur every six to twelve months for monitoring and program adjustments.

Photo provided courtesy of Cochlear Americas© 2009 Cochlear Americas

What type of early intervention or therapy should my child receive?

This is a question you should discuss with your child’s cochlear implant center. The center may be able to recommend an experienced therapist who has worked with young children before and after cochlear implantation and can customize therapy to the child’s individual needs. The decisions you make regarding therapy can have a large impact on your child’s progress with the cochlear implant. Research has shown that for children to make major progress learning to listen and speak with a cochlear implant, their homes and school environments must provide hearing experiences that provide lots of opportunities for children to listen and use their own voices. While some parents may choose to use sign language as part of the therapy, hearing therapy should also be considered an important part of the therapy goal if a family chooses to pursue cochlear implants.

How much do cochlear implants cost?

The costs for getting a cochlear implant can range anywhere from approximately $70,000$100,000. Most medical insurance policies cover cochlear implants, including Medicaid. In the state of Illinois, the Division of Specialized Care for Children (DSCC) also covers cochlear implants for eligible families. Included in costs are hearing tests, medical exams, surgical fees, anesthesiologist, operating room, hospital charges and follow-up. Medical insurance does not always cover hearing and speech training, so be sure to check with your insurance company to see what is included.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 84 Children & Hearing Loss: A Resource Notebook for Illinois Families

85

Bone-Anchored Hearing Devices What is a Bone-Anchored Hearing System?

Bone-anchored hearing devices/systems transmit sound to the cochlea through direct bone conduction. The system is used for people with conductive and mixed loss hearing loss. The hearing loss may be due to chronic infection in the ear, people with absence of or a very Photo and illustrations provided courtesy of Cochlear Americas© 2014 Cochlear Americas narrow ear canal because of a congenital ear malformation, infection, or surgery. It may also be used for people with a profound unilateral hearing loss. The system can be used with a headband-like strap or surgically implanted.

The system works by enhancing natural bone transmission as a pathway for sound to travel to the inner ear, bypassing the external auditory canal and middle ear. The vibrating implant vibrates the bones of the skull which then stimulates the nerve fibers of the inner ear, to aid in sound detection.

When surgically implanted, the bone-anchored hearing system is placed behind the ear leaving the canal open. The implant is integrated with the skull bone and connects directly to the sound processor via an abutment or magnet. Thus, there is no need for a headband and/or pressure against the skin of the head.

Types of hearing loss that use bone-anchored hearing devices CONGENITAL HEARING LOSS – Congenital conductive hearing loss caused by a malformation of the middle or external ear resulting in a missing or incomplete ear canal (external auditory canal atresia) is effectively managed with bone conduction devices. The bone-anchored hearing device sound processor is directly integrated to the skull bone.

UNILATERAL HEARING LOSS – Patients with severe hearing loss on one side, but normal hearing in the other ear may have difficulty understanding speech in background noise (such as group conversations and restaurants) and determining which direction sound comes from.

The device is now an FDA-cleared solution for unilateral deafness and provides a completely unique benefit. The device is placed on the side of the deaf ear, transfers sound through bone conduction, and stimulates the cochlea of the normal-hearing ear. The bone-anchored hearing device effectively transmits sounds from the bad side to the normal ear and ultimately results in a sensation of hearing from a deaf ear. The system can assist in understanding of speech, especially in background noise, and aids in the localization of sound.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 85 Children & Hearing Loss: A Resource Notebook for Illinois Families

86

Supporting Environmental Awareness in a Deaf or Hard of Hearing Child For a young child who is deaf or hard of hearing it is very important to make sure that the environment in which he/she spends time is friendly, accessible, safe, and predictable.

Fostering a supportive and accessible environment will help even young babies become aware of the safe and secure place in which they live. Once your baby begins to understand his/her environment, your baby begins to understand how to interact with it. The following items will help your baby better understand the world around him/her. Many of the items are inexpensive.

And, for a child who is deafblind, many of these items may be helpful as well, depending on the amount of visual awareness he/she has.

Doorbell Flashers and Telephone Visual Alert Systems PICTURE THIS SCENARIO: A young hard of hearing toddler is playing on the floor with his mother. They are playing with his cars and running them up and down a ramp and the child is very engaged. The doorbell rings and his mother gets up and goes into the other room to answer the door. The child looks up to find mother gone. He is scared because he has no idea of where she went or why she left so suddenly. The young child with hearing loss does not have access to all the clues in the environment around him that signal why his mother went to answer the door. He did not hear the doorbell or knock, the sound of his mother getting up off the floor, or her footsteps, the door unlocking, or if his mother was talking to the neighbor.

A doorbell flasher can be a great way to help even a very young deaf or hard of hearing child gain the assurance that comes with knowing what will happen next. The child may connect the flashing light to mother going to answer the door or to the exciting anticipation of a new visitor.

Like the visual signal for the doorbell, the visual alert system for the telephone will help the child come to associate the visual stimulus with an action or response from the family. Families can also use the visual cues to call attention to sounds that the child may be able to hear with or without the use of other technology. This will help the child develop some awareness of the auditory signals as well.

Lighting A child who is deaf or hard of hearing tends to be more visually aware of his/her surroundings and tends to depend much on visual information even if he/she has access to sound with hearing

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 86 Children & Hearing Loss: A Resource Notebook for Illinois Families

87

aids or a cochlear implant. Therefore, it is important to be aware of the lighting in your baby’s environment. A few examples of things to consider: ▪ Make sure your child can see you when you are talking.

▪ Make sure there is enough light on your face but not so much that there is a glare or that it is uncomfortable for you or your child.

▪ Be aware of backlighting which may cause a shadow on your face.

▪ Use lights to get your child’s attention by flicking them off and on.

Alarm Systems Visual signals that accompany smoke and fire alarms are very important. Sometimes, even with hearing aids, a child cannot hear these important sounds. In addition, it may be important to alert the child to certain events when he/she is not typically wearing his/her hearing aids (e.g. while asleep).

You may purchase a smoke alarm that has a strobe light that flashes throughout your home and all hotels will have them for your room upon request. An older child needs awareness of these events as he/she starts to stay home alone and increase his/her independence. Devices are available to provide either visual or vibratory signals to the child who is deaf or hard of hearing.

Other Examples of Assistive Technology ▪ Telephone Flasher – A visual alerting system that signals when the phone is ringing.

▪ Telephone Ringers and Amplifiers - Telephone amplifier devices may work with a hearing aid or independently from it. Amplifiers may increase the volume of the phone.

▪ Wake-up Alarm – A clock that flashes a light, vibrates, or has a loud buzzer tone.

▪ Captioning – Most broadcast content on television has captioning (also known as subtitles). If you view it online, it should have captioning as well but compliance for this varies with the provider. Captioning is also available in most movie theaters and can be available in some live theater venues. It is best to check about availability of this accommodation with the venue before arriving.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 87 Children & Hearing Loss: A Resource Notebook for Illinois Families

88

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

88

Hearing Assistive Technologies

“I am the owner and president of a company.”

“I am a psychotherapist and health educator.”

“I am an adventurer.”

“I am deaf.” ~Raymond Rodgers

Hearing Assistive Technology

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

89

Hearing Assistive Technologies What options are available?

An important area to consider in the overall picture of your child’s hearing is assistive technology. Many children can greatly benefit from assistive technology in their everyday lives at home, school, and social situations. In recent years, there have been many valuable products developed to assist people with hearing loss to further their independence. Among the many products available to help are amplified telephones, loud telephone ringers, personal listening devices, signaling devices, alarm clocks, and television assistance.

One of the key areas to consider in assistive technology is telephone access. No matter what age your child is, being able to use the telephone can be of great value. The simple pleasure of talking to family or friends on the phone can be affected by hearing loss. Additionally, being unable to use the telephone can seriously compromise safety and well-being.

Telephones Specialized telephones include many features to help with your child’s hearing loss. Among these are volume levels well beyond those found in standard telephones (but will reset to safe loudness level after you hang up), adjustable tone control for maximum clarity, extra loud adjustable ringers, larger dialing pads and speaker phone options. Amplified cordless telephones offer many features of corded phones with the additional benefit of portability.

Courtesy of HITEC®

Not every situation requires replacement of existing equipment. Other add-on products such as amplified ringers, portable amplifiers, and visual ring flashers can add important features to existing telephones.

Most landline phones (corded and cordless) have handsets that generate telecoil EMF signals that can be accessed by children via a telecoil (a/k/a T-coil) program in their hearing aids or implants. Telecoil programs do not come as a default program on most devices so be sure to consult with your audiologist. An increasing number of cell phones have a Hearing Aid (and cochlear implant) Compatible (HAC) rating. The M (microphone) rating is a measure of how loud the microphone (speaker) is as it’s held to the ear and is rated 1-4. The T (telecoil) rating is a measure of how loud/strong the telecoil is. When picking a phone, you do not want to go below M3 and/or T3. Such compatibility is an important factor in purchasing a cell phone.

With private landline phones, an older child may benefit from connecting a standard “over the ear” headphone to the telephone. Headphones generate good telecoil signals. These devices are

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 89 Children & Hearing Loss: A Resource Notebook for Illinois Families

90

widely available as complete microphone/headsets normally used in office settings. They are also available for portable phones and cellular phones.

Bluetooth is also a promising technology to connect the aids/speech processors to telephones.

There are manufacturers of FM/DM assistive devices that connect the FM/DM receiver attached to an implant processor or hearing aid to a cell phone through the use of Bluetooth technology.

Modern cell phones have “chat” and “text services” available for short messages. Using these services is a good way to reach a child who is deaf and/or hard of hearing without the child having to worry about understanding what is spoken.

Television The ability to watch and enjoy television can be more difficult for a child with hearing loss. If a child needs greater amplification, a simple solution may be a wireless television listening device. TV listening devices come in a variety of lightweight audio headset receivers that can be worn over the head or as a neckloop (signal is accessed via T-coil). The television volume can be set at a level comfortable for others in the room while the person with hearing loss can adjust the audio receiver as needed.

Closed captioning is another very valuable tool. Captioning enables the user to read text on the television for everything that is being spoken in the program. All televisions made after 1993 that are 13” or larger are required to automatically have the closed captioning technology builtin to the television. FM/DM systems can also be adapted to broadcast the television signal.

Music Players Children who enjoy listening to music or recorded speech should use hearing aids and cochlear implants with telecoil capability. A child can connect to personal media players, mobile phones, and tablets using ordinary over the ear headphones. Any standard headphone with a large, cupped pad (not the in-the-ear type) will normally work. One does not need to purchase headphones advertised as being for the hearing impaired. Cochlear implant manufacturers also sell a cable referred to as a Direct Audio Input (DAI) cable for a direct connection to the implant processor. FM/DM systems can also be used to interface wirelessly with music players or with the DAI cable.

Alerting Systems Alerting Systems provide alternate notification by using extra loud ringers, flashing a lamp or activating a vibrating device to notify a person of sounds in the home. Examples of this include

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 90 Children & Hearing Loss: A Resource Notebook for Illinois Families

91

a doorbell or telephone ringing, a baby crying, the smoke alarm sounding, or any other important sound in the home. Systems can be basic with just a few points of notification, or they can be more advanced and provide complete notification in the home.

Alarm Clocks Alarm clocks are always an important thing to consider for your child, especially when he/she is school-age. Alarm clocks can wake up your child by any of the following options: flashing light, vibration (with a bed shaker), audio alarm with adjustable tone and volume, or any combination of these. Some alarm clocks can work as a receiver for an alerting system. Alarm clocks are also available in smaller, more portable designs, that are convenient for traveling.

Hearing Assistive Technology (HAT) Another key area is Hearing Assistive Technology (HAT) which was formerly known as Assistive Listening Devices (ALDs). Hearing Assistive Technology is designed to help children hear better in a variety of difficult listening situations. Listening in classrooms, groups, restaurants, theaters, or in one-on-one conversations is not only influenced by noise but also by the distance between the speaker and the listener.

Phonak's Inspiro FM system is worn HAT can bring the sound directly to the user’s ears without increasing (above) by the speaker which then background noise and can be used with or without hearing aids. transmits the sound via a boot (below, encircled) which is plugged into the Hearing Assistive Technology can include FM/DM Systems, Infrared, BTE hearing aid, allowing the sound to be received by the user.

Loop, Personal Systems, and Streamers. ➢ FM/DM Assistive Listening Systems use frequency bands - 216-217 MHz for FM and 2.4 GHz for DM to carry sound from the transmitter to the receiver. The sound source can be either a microphone or audio input.

FM/DM systems are very versatile since they are portable. Both the user and speaker have complete mobility. These are ideal for classrooms, meetings, television, music players and cell phone interfacing.

Product photos courtesy of PHONAK® ➢ Infrared Assistive Listening Systems use invisible infrared light waves to carry sound from the transmitter to the receiver. Infrared systems are considered to be line-of-sight devices often used in theaters, courtrooms, and meetings.

The infrared system uses a single transmitter and one or more receivers, which must be

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 91 Children & Hearing Loss: A Resource Notebook for Illinois Families

92

on the same channel (95 KHz, 250 KHz, and 2.3 MHz). The receiver converts the infrared light waves back into sound, which then can be amplified. ➢ Loop Assistive Listening Systems use a physical wire antenna “loop” that surrounds a room or small area. A transmitter circulates a signal through the loop wire creating a magnetic field. Hearing aid users and cochlear implant users with a telecoil switched to “t-coil” will pick up the signal when they are within the “looped” area. ➢ Personal Assistive Listening Devices pick up a sound through a microphone, amplify the sound and direct the sound to the ears through earbuds, headphones, or a neckloop for listeners with “t-coils” in their hearing aids or cochlear processor. ➢ Streamers are intermediary devices that are either worn around the neck or clipped to clothing that receives an external signal (via Bluetooth, FM/DM or DAI) and then sends a proprietary signal with this information to a child’s hearing aid(s) and/or cochlear implant(s). Streamers are specific to manufacturers so you can’t use a Streamer A if you have Device B – it would have to be Device A. Examples of technology that you can connect with a streamer includes remote Bluetooth microphones, Bluetooth-enabled devices such as mobile phones or tablets or a classroom FM/DM system.

These products represent some of the many advances in technology that are continually developing to help our children lead safer, more enjoyable and more independent lives.

Relay Services There are many available technologies for children who have difficulty with discrimination of speech on the telephone. This difficulty is compounded by the poor voice quality of many users of cell phones and speakerphones. A technology that provides assistance by converting speech to sign/text is the nationwide relay system. It is a 24/7 free service in all states for domestic calls. Long distance calls are charged normally. The essential feature of the relay system is that the child with a hearing loss views a screen on which spoken words are signed or typed. The calls are treated as confidential by the communication assistant (CA).

The relay system works in several modes that all start by contacting a CA employed by one of the services systems operated by the major telecommunication land line carriers. The contact may initially be made by telephone through a free 800 number or 7-1-1, or be made by computer through the internet, or PDA. The basic relay modes are: Video Relay Services (VRS) – This enables individuals who use sign language to make relay calls through the use of CAs who can interpret their calls. The caller signs to the CA with the use of video equipment and the CA voices what is signed to the called party and then signs back Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 92 Children & Hearing Loss: A Resource Notebook for Illinois Families

93

to the caller. This type of relay service is not required by the FCC but is offered on a voluntary basis by certain programs. This option is helpful for people who use American Sign Language (ASL) and for people who cannot type on the TTY easily, such as children who are ASL users.

Voice Carry Over (VCO) – The CA places the call to the hearing person and then transcribes what was being said onto a screen viewed by the child with a hearing loss. If both parties have a hearing loss, the CA could transcribe both ends of the conversation. The dis- advantage of this system is that the other caller knows that a CA is involved.

Two-Line VCO (2LVCO) – 2LVCO is initiated as described above and again the CA transcribes what is being said to the child with a hearing loss. However, in this mode, the child speaks normally into a standard telephone and his or her speech is not transcribed to the other person, i.e., the recording is one-way to the child. In this mode, the other person does not even have to know that the CA is typing on a screen being viewed by the child. In both cases, the speaker needs no special equipment. However, the child needs access to the Internet and a separate phone for the voice connection. If access to the Internet is over a phone line using dialup or DSL, a separate phone line would be needed for the data connection.

There are several ways that the transcription viewing can occur. The call to the CA can be initiated on any computer connected to the Internet or through the use of “terminal mode” on any computer. It can also be accessed on hand-held Personal Digital Assistants (PDAs) using proprietary devices with the “chat” (SMS) feature available on PDAs that have Internet access to the Website of the relay provider. The older technology, still in use, although declining, is called TTY/TTD. These devices have a one or two-line display that is inferior to the capabilities of a computer or PDA screen.

CapTel – A CapTel user dials the phone number of the person they wish to call using their CapTel phone. The CapTel phone automatically routes their call through the CapTel call center and connects them to their called party. At the call center, a specially-trained operator (a captionist) uses a customized voice-recognition computer and re-voices whatever is said by the called party. The technology transcribes the operator’s voice into captions that appear on the CapTel screen. The user may also hear the other party’s voice to the best of their ability. The CapTel operator does not hear and does not caption what the CapTel user says.

Hearing Carry Over (HCO) – Hearing Cary Over is designed for individuals with a speech disability that can hear on the telephone but need to type their response on a TTY instead of speaking. The HCO user types his/her conversation for the CA to read and voice to the

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 93 Children & Hearing Loss: A Resource Notebook for Illinois Families

94

standard telephone user. When the standard telephone user speaks back, the HCO user will hear the response. Call your relay service provider for more detailed information.

Speech to Speech (STS) – All states offer STS, which enables individuals with speech disabilities to communicate by voice through a CA rather than by typing on a TTY. Individuals call a patient, trained CA who is familiar with many speech patterns and has excellent language recognition skills. The CA makes telephone calls for the individual and repeats what is said.

Call your relay service provider for more detailed information.

Spanish Relay Services – While Spanish relay is not required for calls between states, many states with large Spanish-speaking populations already offer this service on a voluntary basis.

More information about the relay system and CapTel is available in Illinois from the Illinois Telecommunication Access Corporation at http://www.itactty.org/, or visit the FCC Website at www.fcc.gov/cgb/consumerfacts/trs.html.

Skype and video-chatting – Skype and video-chatting are now popular and common modes of communication for individuals. Most computers come equipped with Web cams, or an external Web cam can be purchased for the computer. When both users are sitting in front of the cameras, they can be connected through the Internet and are able to view one another while they talk. Skype is a program that can be downloaded, which enables both users to view one another while they talk. Google Chat, which takes place through a Google Mail (or "G-mail") account is another popular way to video-chat and available on some phones, such as the iPhone. This mode of communication has been very popular in the Deaf community, as it allows persons who are deaf to contact one another via the Internet and communicate with sign language. This way, both users can view one another while communicating with sign language.

Rear Window Captions – A type of captioning system used in public places, such as theaters, has the advantage of allowing those who desire captions to view them but does not require that all members of the audience view the captions. This rear window captioning system displays reverse captions on a light emitting diode (LED), which is mounted in the rear of the theater.

Patrons desiring captions use transparent acrylic panels attached to their seats to reflect the captions so that they appear superimposed on or beneath the screen. The reflective panels are portable and adjust, enabling the caption user to sit anywhere in the room.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 94 Children & Hearing Loss: A Resource Notebook for Illinois Families

95

The FM Link: Communication in Action Listening in background noise can be a challenge for everyone but is especially difficult for those with hearing loss. In fact, one of the most common complaints of people with hearing loss is that they cannot hear and understand in noisy conditions. Listening in noise or at a distance can also be very tiring because hearing impaired people do not hear certain sounds and what they do hear may be distorted or unclear. For children with hearing loss, it is important that we provide them the clearest, most reliable signal possible because they are using this input to develop speech and language.

Teacher wearing FM Transmitter

Fitting the most appropriate amplification such as hearing aids or a cochlear implant is the first step to success for a child with a hearing loss, but even the best amplification is not always enough. In noisy places and at times when the speaker is more than a few feet away, it will still be difficult for the child to understand what is being said. For these challenges such as listening in a classroom, playing outside, or at a party, a child may need an FM system working along with his/her hearing aids or cochlear implant.

An FM system is like a radio and consists of two parts. One person uses a microphone to send a signal through the air as radio waves. This microphone is also referred to as the transmitter. These radio waves are picked up by small devices called receivers. Modern receivers usually plug directly into the listener’s hearing aids or cochlear Transmitters implant without the use of any cables. An FM system allows the child to hear the speaker (with the microphone) as if that person is standing right next to him/her even if the speaker is standing at the other end of a room and there is a lot of other noise in the room.

Receivers

ESPrit™ 3G behind-the-ear speech processor with an FM receiver attached.

Hearing Aid with an FM receiver attached.

One of the most important features of FM systems for a child is the ability to use FM at the same time as a hearing aid or cochlear implant. In a classroom, for example, it is still crucial that the child hears his/her classmates at the same time that he/she is hearing and understanding the teacher. An FM system routes the teacher’s voice directly into teacher’s voice directly into the hearing aid or

Images courtesy of Cochlear Americas and Phonak Hearing Systems

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 95 Children & Hearing Loss: A Resource Notebook for Illinois Families

96

implant at the same time that the rest of the room is heard normally. This keeps the child in touch with all activity in the room but still gives that extra boost to the teacher who may not be standing nearby while providing important instruction.

When purchasing an FM system, there are several factors to consider. It should first be decided where the child has the hardest time listening and understanding. The userâ&#x20AC;&#x2122;s ability to accept and manage such a device may also be a consideration. After identifying where the FM will primarily be used, it is also important to consider the training needs of the participants, including school staff, other students, family members and even the user (child) since many people in contact with the child may not be familiar with FM systems. These factors may affect the style and features chosen. All of these issues should be discussed with your audiologist when selecting the best system for your child.

FM should be a consideration for all children with hearing needs from day one. Whether riding in a car, playing on a field, or studying in a classroom, this technology provides the freedom to participate in even the most difficult listening situations. It provides the most reliable access to speech and language regardless of the surroundings. FM is the link for active communication.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 96 Children & Hearing Loss: A Resource Notebook for Illinois Families

97

Role of the Pediatrician

Role of the Pediatrician

“I am a business owner and consultant.”

“I am a song-sign performer and dancer.”

“I am a national DeafBlind advocate.”

“I am DeafBlind.” ~Bryen M. Yunashko

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

98

Role of the Pediatrician The Pediatrician – The Coordinator of Your Child’s Hearing Care If you are reading this article, it is likely that someone has said to you, “Your child does not hear,” or “Your child is deaf” or “Your child is deafblind.” And, if you are like most parents that have heard these statements, that person was likely not your pediatrician. Even though many pediatricians today have limited familiarity with early-identified hearing deficits, they are an essential part of your child’s hearing health and must be brought into the evaluation and education process.

For the remainder of this article, the terms “DHOH” (Deaf or Hard of Hearing) or “deaf” will be used, because the issues facing parents are the same: Their child may have a profound deficit or just enough of a problem hearing to keep their child from learning to use verbal language. The term “hearing deficit” will be used here rather than “hearing loss” – if an infant or toddler never had hearing, then the hearing level is a “deficit”, not a “loss.” “Pediatrician” will be used to refer to the medical provider caring for the child. This might include Family Practitioners, General Physicians, or a variety of advance practice nurse specialists.

Historically, hearing problems have been diagnosed and managed by the audiologist who performed the audiograms and fit and programmed the hearing aids. Children with problems hearing that could not be corrected adequately by an audiologist went to special programs to learn to read lips or learn to use sign language. However, in the past 30 years, new educational laws have been enacted to help parents enlist a team of specialists to gather information and engage other specialists to help make decisions about the care of children with hearing problems. For the ages 0-3, social service workers and educators work with parents to create the IFSP (Individualized Family Service Plan). For the ages 3-21, they help create the IEP (Individualized Education Plan). Unless the child had other medical problems, there seemed to be little reason for a pediatrician to be involved beyond providing routine health care (immunizations, colds, school physicals, etc.).

However, pediatricians are involved, can be involved, and should be involved in all aspects of children’s health and well-being. Pediatricians help parents monitor their children’s development. This includes motor development (when the child sat or picked up a raisin between two fingers), and language and social development. Pediatricians know who to consult for medical advice for medically complex children. They also make referrals to behavior and developmental specialists, support groups, and counseling for a variety of medical, psychological, or social concerns. Pediatricians are trained that this is particularly important for children with chronic medical conditions such as spina bifida, Down syndrome, cleft lips, or cancer. For a variety of reasons pediatricians are becoming increasingly aware of deafness and

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 97 Children & Hearing Loss: A Resource Notebook for Illinois Families

99

are better understanding the role they should play in caring for children with hearing deficits and their families.

Initial Encounters with the Pediatrician After the “Refer” Status Getting the Newborn Hearing Screen results to the pediatrician: Early diagnosis is important. At the time of writing this article, most states, including Illinois, have laws requiring that children be screened before leaving the newborn nursery. In Illinois, birthing hospitals are mandated to report the newborn hearing screening results to the infant’s primary care provider – the physician who will be taking care of your baby after leaving the hospital. Perhaps when asked, you were not able to let the nurses know which physician or clinic you planned to take your baby to for his or her medical needs. If the hospital staff was not able to identify the pediatrician, then the screening results will be reviewed by the physician of record, but will not have been sent to the pediatrician you chose later. If you have a copy of the results or if the results were reported to you, be sure that you bring the results or tell your pediatrician whether your child “passed” or “referred” in one or both ears. Do not assume that she knows the result. Also, there may have been a reason that your baby missed his or her hearing screening while in the hospital. Make sure you tell the physician this and contact the state EHDI (Early Hearing Detection & Intervention) program at (217) 782-4733 or (800) 3223722 for help.

“Passed” versus “Referred” In Illinois, each hospital must provide another screening (rescreening) if a newborn does not pass their initial Newborn Hearing Screen. These two hearing screenings must occur prior to discharge from the nursery. Therefore, most of the time a result of “refer” means that two hearing screenings have already been performed and that the child did not pass them. Based upon this screening, the parent is told only whether each ear “passed” or should be “referred” for future testing.

Your pediatrician is your child’s care coordinator: After you have selected a pediatrician and informed her of your child’s “refer” status in one or both ears, you will need to work with your pediatrician to arrange further evaluation.

Occasionally pediatricians will still incorrectly advise, “Wait and see if your child really needs to be retested.” But this is not the standard of care as outlined by several medical groups, and it is in violation of the state of Illinois guidelines for Universal Newborn Hearing Screening. If the pediatrician is reluctant to make arrangements for further testing after a “refer” on hearing screen, the parents should politely increase their pediatrician’s expertise and suggest that their

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 100 98 Children & Hearing Loss: A Resource Notebook for Illinois Families

pediatrician review the state requirements and/or the American Academy of Pediatrics policy guidelines. We all learn new things in all our professions!

Your pediatrician will probably need to write a referral for an additional outpatient rescreen or a diagnostic hearing evaluation. Many of the birthing hospitals will have arranged an appointment for outpatient hearing tests for the babies which “refer” before the child is discharged from the nursery. Whether arranged by your pediatrician, or the birthing hospital, you will likely go to an audiologist or a technician, who could begin with a hearing screening and continue with further diagnostic testing as needed.

This brings us to the practical reason for educating your pediatrician: many or most of the evaluations or tests of hearing deficits must be OK’d by the primary care physician, which means we need the pediatrician to make the referrals for testing. Therefore, if additional outpatient hearing screening is performed and is not passed, then your child must be referred for audiological diagnostic testing. But, since the audiologist cannot make the referral, you will need your pediatrician to make the referral. The audiological diagnostic testing is painless for your child, but it takes a little longer and may require a mild sedative medication. This test will give an audiologist the information he needs to determine if hearing aids will be helpful, what kinds of hearing aids your child might need, and if your child might be a candidate for a cochlear implant. Once again, even to place hearing aids, you need a “medical clearance” from your pediatrician, so your pediatrician needs to remain involved. As to the actual hearing aid or assistive device, your pediatrician likely will not understand these issues well, but with referrals to the appropriate hearing professionals, you and your pediatrician should both be able to get the answers you need.

(PLEASE NOTE – REQUIRED REFERRALS VARY FROM STATE TO STATE: This binder was created for parents who live in Illinois where screening is mandated. However, if you live in a state in which Universal Newborn Hearing Screening is not mandated, you may choose to ask your pediatrician for a referral for a screening test.)

Encounters with the Pediatrician if Hearing Declines Children who pass their Newborn Hearing Screen, but then seem to develop a loss: Some children who are DHOH were born with normal hearing or hearing that was good enough that they pass the newborn hearing test. They may have had a sudden event that resulted in deafness or the slow progression of hearing loss. If at any time you are concerned that your child is not hearing or that his/her language is delayed, ask your pediatrician for a referral for a hearing test. There is no age that is too young. You will have to (politely) reeducate your pediatrician if she says that your child is too young to be tested. Similarly, you

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 101 99 Children & Hearing Loss: A Resource Notebook for Illinois Families

should ask for a referral for a hearing evaluation, even if your pediatrician tries clapping, snapping, or jingling keys in your child’s ear. If there is any suspicion of even a slight language delay, ask for the referral for hearing evaluation. Do not “wait and see.” After you have insisted on being referred for a hearing evaluation, and if your child’s hearing is normal, the test rules out hearing loss as a contributing factor to the speech delay. However, if your child is found to have a hearing deficit, you will have avoided further delay in diagnosis and intervention.

The Pediatrician's Medical Role Medical evaluation: Some DHOH children have an obvious medical cause for their hearing loss. If so, medical interventions or follow-up may be apparent to your pediatrician. Never hesitate to ask questions such as, “Does my child need blood work?” “Does my child need a CT scan?” or “Should my child see an ENT specialist?” Researching information on the Internet can be useful to familiarize parents with the many issues relating to hearing, but parents should be very careful not to believe what they read – there is much false information and numerous unreliable sources. If you have questions regarding a symptom or disorder that you believe pertains to your child's health, do not hesitate to bring up these questions with your pediatrician until you receive a satisfactory answer. Your pediatrician has years of schooling and experience and should be able to answer or research any questions you may have regarding your child's health and overall well-being. Many times, your pediatrician will have to look into an issue and get back to you – they cannot be an expert in everything!

Genetic testing and counseling, and surveillance of associated medical problems: If your child has a hearing loss and no one is certain why, you may need a referral to a geneticist or another medical professional with expertise in hearing loss. Your child could be DHOH due to something that happened before birth (infections, exposure to alcohol, drugs, or medicines), during birth (not enough oxygen, jaundice or yellow skin, infections), or after birth (infections, medications). With the possible exception of alcohol or illegal drug use, there probably was nothing that you or a doctor could have done to prevent your child’s hearing loss.

In about half the cases of hearing loss, the cause is genetic.

Sometimes pediatricians, geneticists or other experts can ask you questions, examine your child, do a few studies, and find an answer for you. In about one-third of the cases, the answer might indicate the need for close follow-up of your child’s heart, eyes, kidneys, or development. This might require blood work or other types of tests. Most children will not require any special follow-up. However, they might recommend some genetic testing (usually blood work) be

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 102 Children & Hearing Loss: A Resource Notebook for Illinois Families 100

done on your child and/or other members of the family, especially if considering having other children.

There are over 400 genetic syndromes that include hearing loss. Currently, almost 100 different types of gene mutations have been found that cause hearing loss without any other problems. In fact, almost half of these are caused by a problem with one gene that creates one specific type of protein! A geneticist or other expert can help you find the answer. Knowing the answer will help you to know the likelihood that you will have another child who is DHOH, or if any of your children are at risk to lose their hearing sooner rather than later.

Whether your child is DHOH from something that happened or from genes, your pediatrician will need to follow your child’s medical condition over time. Your child’s hearing deficit may worsen over time and must be followed. If your child has associated problems with his/her heart, kidneys or brain, these can progress over time. Your pediatrician will need to follow these things appropriately.

Hearing aids or cochlear implants: When your DHOH child is young, the most important goals are to maximize the amount of hearing your child can achieve and to start language as soon as possible. In most cases, the language for your child will be the language spoken by you, your child’s parents. Your pediatrician’s referral to an audiologist is the first step in getting an appropriate hearing aid.

Once again, please be aware that to obtain a hearing aid, the audiologist will need a “medical clearance” form signed by your pediatrician or other doctors. If the hearing deficit is severe or profound your child might be a candidate for a cochlear implant. In severe-to-profound cases, non-spoken forms of language, such as American Sign Language and Cued Speech should be considered also. The audiologist or your pediatrician should be able to refer you to a cochlear implant center for an evaluation to determine if your child may be a candidate. Your pediatrician might have some insight, but most do not know a lot about this topic. Once again, you may have to encourage your pediatrician to do some background work to understand the issues related to your child and the referrals needed.

Assistive devices: As your child gets older, there will be other things that will help your child function and learn better. Various types of lights can be used with games and other interactive things to help increase your child’s visual attention. Blinking lights can be used with alarm clocks, doorbells, phones, fire alarms, and for a child’s bedroom door. You don’t have to wait until your child is older to obtain these. The sooner you start using these devices, the sooner your DHOH child Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 103 Children & Hearing Loss: A Resource Notebook for Illinois Families 101

will begin to function like the other children in your home. FM amplifiers can help your child attend to things better at home, school, public or religious functions. TTYs, text messaging, instant messaging, or email helps DHOH children stay in contact with their friends, just like a telephone does for hearing children. There are many other devices available for deaf children.

Usually, the other professionals that help you with your child’s deafness will help you decide what devices are appropriate and at what age. Sometimes a note or prescription from your doctor can help you obtain these devices. At visits, be sure to tell your pediatrician what your child has been using and if you feel it’s been successful. Although she may not be the expert, she may find the information useful to her overall assessment of your child. She may even have some other ideas to contribute.

Behavior, language, early intervention, education, and follow-up: Pediatricians have training in normal child development. Some behaviors of deaf children are common to deaf children and not to hearing children. Many of the behavioral milestones that a child achieves have nothing to do with hearing. Certain unusual behaviors may be related to a child’s deafness or its cause, but some behaviors are clues for pediatricians that there may be another medical problem. Tell your pediatrician about what your DHOH child does, just as you would for your hearing children. If she needs to, she might consult with the other professionals providing services to your child. If not, she can make a new referral.

Most pediatricians are not experts in advising parents with DHOH children about language, early intervention programs, and educational choices. That’s why they need to be part of your child’s team. Pediatricians are required to make a referral to the Early Intervention system in your area. Your pediatrician should be able to help you know if your child’s ability to communicate is significantly delayed, or if he/she has made progress since the last visit. Some pediatricians understand these things or learn about them when they have patients who need them. If not, your pediatrician might be able to help you find other professionals who can help you. Sometimes a pediatrician’s referral or statement of concern can help parents move to the next step.

Whether your pediatrician can or cannot help guide you through these questions, encourage your “team” of professionals and pediatrician to contact each other. Do not assume that communication between them occurs automatically. It usually does not. A request from the pediatrician to be included can help start the process. When you see your pediatrician, bring your child’s recent audiogram, school report, IEP or IFSP, or other reports. This may help your pediatrician better understand what she notices on your child’s physical examination or developmental assessment.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 104 Children & Hearing Loss: A Resource Notebook for Illinois Families 102

Summary / Conclusion Every time a pediatrician has a patient with an uncommon or unfamiliar condition, they learn.

Physicians will go back to articles and textbooks to research unknown symptoms and conditions. Most importantly, the physician/pediatrician should listen to the parents' concerns and observations. What parents tell the doctor about their own experiences and what they have learned from the resources provided to them always helps educate the pediatrician.

If the pediatrician does not have specialized knowledge about your child's medical conditions, he or she must be able to write referrals to relevant specialists for diagnosing deafness, medical evaluation and genetic counseling, hearing aids, and cochlear implants. She should make proper referrals, provide needed medical and audiological follow-up, and advocate for your child. Your pediatrician might be able to help with assistive devices, monitoring and tracking your childâ&#x20AC;&#x2122;s behaviors, language development, and education. By providing your pediatrician with the information provided to you, you can help her know what is being considered by the other professionals helping your child. In doing so, you better enable your pediatrician to be the best possible advocate for your child.

You may want to consider sharing the letter below with your pediatrician. Downloadable copies are available on our website (www.choicesforparents.org).

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 105 Children & Hearing Loss: A Resource Notebook for Illinois Families 103

Our child has a hearing deficit…

Our pediatrician should know: We are parents of a child with a hearing deficit. My child’s pediatricians (pediatric primary care providers) should know about some specific resources to be able to help all the children in their practice with a hearing deficit. These resources are crucial to getting my child off to a good start.

First, we all need to be patient with each other. We parents will need to learn what a hearing deficit means for our child and our family. Be understanding. Help us through this process. And the pediatricians may need to learn how to help us. They can contact the Illinois Chapter of the American Academy of Pediatrics at 312.733.1026 or go to the website at www.illinoisaap.org.

•

Bureau of Early Intervention Child and Family Connections Office (CFC) must be contacted so that our child can be offered service. We can receive therapies for our child to learn how to communicate, how to use hearing aids, and we can learn about other technology and therapies that might help our child and our family. When we contact the CFC office closest to our home, a plan will be written and we can receive services until our child turns 3 years old.

CFC Phone Number: 800.701.0995 CFC Website: www.state.il.us/agency/dhs/earlyint/ei01parent.html

•

Division of Specialized Care for Children (DSCC) must be contacted so that we can receive financial, medical and technical assistance. When we contact DSCC, we will fill out an application to see what services we are eligible for until our child turns 21 years old. The Central Office can refer us to our local DSCC office for assistance.

DSCC Central Office Phone Number: 800.322.3722 DSCC Web Site: www.uic.edu/hsc/dscc/ Website of the Newborn Hearing Program: www.illinoissoundbeginnings.org

•

CHOICES for Parents also must be contacted so that we can have help through this process of learning about hearing loss. They help us find parent-to-parent support, professional support, linkage to local resources, and information such as the free notebook “Children & Hearing Loss.” We can contact CHOICES for Parents at any time, regardless of how old our child is or when the diagnosis occurred.

CHOICES for Parents Phone Number: 312.523.6400 or 866.733.8729 CHOICES for Parents Website: www.choicesforparents.org CHOICES for Parents CHOICES for Parents is a statewide coalition of parents and professionals ensuring that children with identified hearing loss and their families receive the necessary resources, advocacy, information, services and support. CHOICES for Parents is committed to providing unbiased information.

Table of Contents

PO Box 646 Highland Park, Illinois 60035 866.733.8729 or 312.523.6400 info@CHOICESforParents.org www.CHOICESforParents.org

Children & Hearing Loss: A Resource Notebook for Illinois Families 106 Children & Hearing Loss: A Resource Notebook for Illinois Families 104

Deaf Culture

Deaf Culture

“I am an audiologist.”

“I am Late-Deafened with bilateral cochlear implants.”

“I love to teach people about technology.”

“I am addicted to musical theatre.” ~Tina Childress

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

107

Deaf Culture & American Sign Language –What is it All About?

The deaf and hard of hearing population is made up of a very diverse group of individuals.

Some are profoundly deaf and others are hard of hearing. Some were born deaf while others became deaf later in life. Some individuals use spoken English, written English, Cued Speech, English-based sign language, American Sign Language (ASL), or a combination of these.

English and ASL are distinct and complete languages. Some individuals attend their neighborhood schools while others attend residential schools for the deaf. Some individuals utilize cochlear implants, hearing aids, or prefer not using any amplification. Regardless of the unique characteristics of each individual, there is one thing they all have in common -- They are all human and they all have some degree of deafness.

Some members of the deaf and hard of hearing population also consider themselves members of a Deaf Culture. What is Deaf Culture? Let’s look first at the definition of the word “culture.”

According to the Encyclopedia Britannica, “...culture includes language, ideas, beliefs, customs, codes, institutions, tools, techniques, works of art, rituals, and ceremonies, among other elements.” Do some individuals within the deaf and hard of hearing population have a distinct culture?

Yes, they do!

The primary language used by members of the Deaf Culture is ASL. They have behaviors and mannerisms related to their strong reliance on visual information. Members of the Deaf Culture enjoy socializing with other members of their culture. There can be an instant bond because of their shared experiences of being a person with hearing loss.

Some examples of activities and events for the deaf or hard of hearing and their families include the Illinois Association of the Deaf (IAD) and Deaflympics. IAD is a leading organization run by and for individuals who are deaf or hard of hearing. IAD and its regional chapters hold regular conferences and meetings to provide opportunities for social gathering, sharing information, and exploring arts and technologies specific to persons with hearing loss.

Deaflympics is a gathering similar to the Olympics which brings together 3,000 athletes from 80 countries to compete. Another is the DeafNation World Expo, an international gathering of 15,000 individuals with hearing loss. Many members of Deaf Culture pride themselves in being bilingual: in ASL and English, and bicultural: comfortably interacting in both Deaf and Hearing Cultures.

ASL is the visual language shared by members of the Deaf Culture. ASL is the third or fourth most commonly used language in the United States. ASL is different from Manual Signed

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 108 Children & Hearing Loss: A Resource Notebook for Illinois Families 105

English. ASL has its own rules, grammar, and syntax. Anything a person can say in English can also be expressed in ASL. Sign language is not universal. There are many other sign languages in the world. Examples include Mexican Sign Language, French Sign Language, and Swedish Sign Language.

Hearing families with young children who have a hearing loss are encouraged to find opportunities to meet adult role models and peers who also have a hearing loss. It is important for a child with hearing loss to meet others like them. Meeting peers and adults who are deaf or hard of hearing helps children develop positive self-esteem. The Deaf Community supports families becoming involved in activities in their local area to help support children in becoming successful, well-educated adults.

In the fall of 2016, Chicago Hearing Society started a new program called CONNECTIONS. The mission of CONNECTIONS is to connect individuals who are Deaf or Hard of Hearing, called Mentors, with families who have children who are Deaf or Hard of Hearing. Through this connection, Mentors support families by providing their perspective as an individual who is Deaf or Hard of Hearing. Not only are Mentors able to share their perspective, but also, they provide services to help families achieve their individualized program goal/s (which could include fostering language, communication, advocacy skills, etc.). For more information, please contact Michelle Mendiola at MMendiola@anixter.org.

To find additional resources to meet deaf adults, contact CHOICES for Parents or go to the website at www.choicesforparents.org.

What is the difference between persons who are “deaf,” “Deaf,” or “hard of hearing?”

The deaf and hard of hearing community is diverse. There are variations in the cause and degree of hearing loss, the age of onset, educational background, communication methods, and how individuals feel about their hearing loss. How people “label” or identify themselves is a personal choice and may reflect identification with the deaf and hard of hearing community, the degree to which they can hear, or the relative age of onset. For example, some people identify themselves as “late-deafened,” indicating that they experienced a loss of hearing later in life.

Other people identify themselves as “deafblind,” which usually indicates that they have some degree of hearing loss and some degree of vision loss. Some people believe that the term “people with hearing loss” is inclusive and efficient. However, some people who were born deaf or hard of hearing do not think of themselves as having lost their hearing. Over the years, the most commonly accepted terms have come to be “deaf,” “Deaf,” and “hard of hearing.”

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 109 Children & Hearing Loss: A Resource Notebook for Illinois Families 106

“Deaf” and “deaf” According to Carol Padden and Tom Humphries, in Deaf in America: Voices from a Culture (1988): “We use the lowercase deaf when referring to the audiological condition of not hearing, and the uppercase Deaf when referring to a particular group of deaf people who share a language – American Sign Language (ASL) – and a culture. The members of this group have inherited their sign language, use it as a primary means of communication among themselves, and hold a set of beliefs about themselves and their connection to the larger society. We distinguish them from, for example, those who themselves losing their hearing because of illness, trauma or age; although these people share the condition of not hearing, they do not have access to the knowledge, beliefs, and practices that make up the culture of Deaf people.”

Padden and Humphries further comment, “this knowledge of Deaf people is not simply a camaraderie with others who have a similar physical condition, but is, like many other cultures in the traditional sense of the term, historically created and actively transmitted across generations.”

The authors also add that Deaf people, “have found ways to define and express themselves through their rituals, tales, performances, and everyday social encounters. The richness of their sign language affords them the possibilities of insight, invention, and irony.”

The relationship Deaf people have with their sign language is a strong one, and, “the mistaken belief that ASL is a set of simple gestures with no internal structure has led to the tragic misconception that the relationship of Deaf people to their sign language is a casual one that can be easily severed and replaced.”

Source: Padden, C. & Humphries, T. (1988). Deaf in America: Voices from a Culture.

Cambridge, MA: Harvard University Press.

“Hard of Hearing” “Hard-of-hearing” can denote a person with a mild-to-moderate hearing loss. Or it can denote a deaf person who doesn’t have or want any cultural affiliation with the Deaf community. Or both. The HOH dilemma: in some ways hearing; in some ways deaf; and in others, neither.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 110 Children & Hearing Loss: A Resource Notebook for Illinois Families 107

Can one be hard-of-hearing and ASL-Deaf? That’s possible, too. Can one be hard-of-hearing and function as hearing? Of course. What about being hard-of-hearing and functioning as a member of both the hearing and Deaf communities? That’s a delicate tightrope-balancing act, but it is possible.

As for the political dimension: HOH people can be allies of the Deaf community. They can choose to join or to ignore it. They can participate in the social, cultural, political, and legal life of the community along with culturally Deaf or live their lives completely within the parameters of the “hearing world.” But they may have a more difficult time establishing a satisfying cultural/social identity. Reprinted from: Deaf Life, “For Hearing People Only” (October 1997) Hearing-impaired – This term is no longer accepted by most in the community but was at one time preferred, largely because it was viewed as politically correct. To declare oneself or another person as deaf or blind, for example, was considered somewhat bold, rude, or impolite.

At that time, it was thought better to use the word “impaired” along with “visually,” “hearing,” “mobility,” and so on. “Hearing-impaired” was a well-meaning term that is not accepted or used by many deaf and hard of hearing people.

For many people, the words “deaf” and “hard of hearing” are not negative. Instead, the term “hearing-impaired” is viewed as negative. The term focuses on what people can’t do. It establishes the standard as “hearing” and anything different as “impaired,” or substandard, hindered, or damaged. It implies that something is not as it should be and ought to be fixed if possible. To be fair, this is probably not what people intended to convey by the term “hearing impaired.”

Every individual is unique, but there is one thing we all have in common: we all want to be treated with respect. To the best of our own unique abilities, we have families, friends, communities, and lives that are just as fulfilling as anyone else. We may be different, but we are not less. ~Reprinted with permission from the National Association of the Deaf, www.nad.org.

The values, behaviors, and traditions of Deaf culture include: •

Promoting an environment that supports vision as the primary sense used for communication at school, in the home, and in the community, as vision offers individuals who are deaf access to information about the world and the independence to drive, travel, work, and participate in every aspect of society.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 111 Children & Hearing Loss: A Resource Notebook for Illinois Families 108

•

Valuing children who are deaf as the future of Deaf people and Deaf culture. Deaf culture, therefore, encourages the use of ASL, in addition to any other communication modalities the child may have.

•

Support for bilingual ASL/English education of children who are deaf so they are competent in both languages.

•

Inclusion of specific rules of behavior in communication in addition to the conventional rules of turn taking. For example, consistent eye contact and visual attention during a conversation is expected. In addition, a person using sign language has the floor during a conversation until he or she provides a visual indicator (pause, facial expression, etc.) that he or she is finished.

•

Perpetuation of Deaf culture through a variety of traditions, including films, folklore, literature, athletics, poetry, celebrations, clubs, organizations, theaters, and school reunions. Deaf culture also includes some of its own "music" and poetry as well as dance.

•

Inclusion of unique strategies for gaining a person's attention, such as: o

gently tapping a person on the shoulder if he or she is not within the line of sight,

o

waving if the person is within the line of sight, or

o

flicking a light switch a few times to gain the attention of a group of people in a room.

Defining Deaf Culture One possible definition of U.S. Deaf culture (and there must be many!) is a social, communal, and creative force of, by, and for Deaf people based on American Sign Language (ASL). It encompasses communication, social protocol, art, entertainment, recreation (e.g., sports, travel, and Deaf clubs), and worship. It’s also an attitude, and, as such, can be a weapon of prejudice— “You’re not one of us; you don’t belong.”

Despite the mighty efforts of generations of oralists, deaf people still prefer to communicate and mingle with their own kind. That is the psychosocial basis of Deaf culture. Deaf people in the United States have staunchly resisted the unstinting attempts of oralists to eradicate the use of sign language and assimilate them into the hearing mainstream. The simple fact is that deaf people who attend the common residential schools for the deaf—no matter what mode of communication is forced on them in the classroom—tend to seek out other deaf people and communicate in sign language. This is true, to some extent, in other countries, but the U.S. arguably has the most sophisticated and creative—and public—Deaf culture of any. ~Reprinted from For Hearing People Only: Third Edition, Chapter 55

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 112 Children & Hearing Loss: A Resource Notebook for Illinois Families 109

Note that “Deaf culture” is a positive term, indicative of pride and a communal identity, whereas terms like “hearing-impaired” and “deafness” do not connote any particular pride or sense of community. There are oralists (deaf as well as hearing) who deny that there is such a thing as Deaf culture. They prefer to see it as an artificial political construct formulated in recent times, more of a self-conscious, posturing attitude than a reality. This view denies the importance of ASL to Deaf people.

Each ethnic and religious group has its own culture. In the case of U.S. mainstream Protestants, the characteristics may not be sharply defined. Recent Hindu or Hmong emigrants, for example, will likely have a well-defined, all-encompassing culture—a distinct mode of dress, a distinct cuisine.

Deaf people who claim a culturally “Deaf” identity compare themselves to members of other ethnic communities. “We have a language; we have a culture,” they say. Opponents of this view don’t see deaf people as members of an ethnic minority but simply as handicapped persons, people with a hearing loss, people with a hearing disability, audiological patients. ~Retrieved from http://www.deafculture.com/definitions/ Deaf and Ethnic Cultures What makes a social group a culture? How does Deaf culture compare to full-fledged ethnic and religious cultures? What are the criteria for recognizing a group as a genuine community or culture? Essentially, Deaf American culture fulfills four essential criteria: a distinct language, a distinct folkloric tradition (encompassing ASL storytelling, performing arts, and Deaf history), distinct social institutions, and distinct schools (all of which are ASL-based). It also partially fulfills the criterion of distinct social customs and protocol. Below, we look at some typical components of ethnic cultures and describe how deaf culture compares.

Distinct Cuisine There are no comparable “Deaf-cuisine” customs, no “Deaf foods,” no community-wide “Deaf feasts.” There is no Deaf counterpart to Thanksgiving. Deaf people eat what their hearing families or schoolmates eat, and enjoy what’s popular in American cuisine. Deaf people can, of course, devise their own cuisines, and can celebrate important events in Deaf history such as the birthdate of Laurent Clerc, the founding of Gallaudet University (the Charter Day Banquet is an annual event on campus), or Deaf Awareness Week, by participating in a local feast or cookout, but that’s a different matter entirely.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 113 Children & Hearing Loss: A Resource Notebook for Illinois Families 110

Distinct Mode of Dress There is no distinctly Deaf mode of dress. Deaf people can, of course, devise their own fashions according to their tastes, and can wear “Deaf Pride” or ASL-themed T-shirts, baseball caps, and badges proudly proclaiming their identities to the world, but that’s not the same thing as adhering to a traditionally prescribed, restrictive mode of dress, such as worn by Orthodox Jews, Muslims, or the Amish.

Distinct Scriptural Tradition/History There is no “Deaf religion.” There is no “Deaf God,” no “Deaf Gospel,” no special liturgy, and no set of beliefs unique to the Deaf community. There is no “Deaf Prophet” who is revered as having received the Word of God from heaven or an angel. Deaf people utilize the same scriptures and liturgies used by hearing people.

Distinct Houses of Worship Deaf people may attend a Deaf church or a “hearing” church (we’re using the term “church” to denote any organized house of worship) that has interpreted services, they may attend one without any interpreter, or may not attend church at all. Note that Deaf churches are almost invariably offshoots of established churches, such as the Lutheran or Episcopalian.

Distinct Social Customs Each culture determines which behaviors are acceptable and unacceptable. Deaf culture maintains certain rules of protocol that differ from what’s considered socially acceptable. In U.S. culture, it’s considered “forward” for two persons to maintain a steady, locked gaze into each other’s eyes. This kind of behavior tends to make uninitiated hearing people uncomfortable.

Deaf culture maintains certain rules of protocol that differ from what’s considered socially acceptable. For example, in Hearing culture, a restaurant waiter must never touch a diner. In Deaf culture, it’s acceptable for a waiter to touch a diner’s shoulder to get her attention.

Similarly, it's okay for Deaf persons to maintain a steady gaze while they’re signing to each other—something that might be impermissible by Hearing standards.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 114 Children & Hearing Loss: A Resource Notebook for Illinois Families 111

Another example: according to Deaf culture, a person who leaves a room where there are other Deaf people notifies them that s/he’s going into another room—even if it’s a short jaunt to the bathroom. Hearing people might consider this tacky, but there’s a practical reason—it forestalls frantic searching for the person who has just left the group. Since Deaf people can’t hear another person yell through the bathroom door, they notify their friends before removing themselves from eyeshot. It’s a practice that, all things considered, makes sense.

Deaf social protocol is based on Deaf people’s need to maintain good eye contact and visibility, and to make signing easier and more comfortable. Therefore, Deaf culture does have this in common with ethnic/religious cultures.

Transmission from Parents to Children One important criterion of a culture is that it transmitted from parents to children. In other words, parents teach their children the byways, norms, and values of their culture: the language, rules, customs, folklore, religion, and moral values they cherish, as part of their everyday family life. As far as Deaf culture goes, this holds true for only a small minority of Deaf children— those with Deaf parents. Every other culture is transmitted from parents to children. Deaf culture is unique in that it has traditionally been transmitted from child to child at the schools for the deaf. Since the overwhelming majority of deaf children have hearing parents, they didn’t learn the language, values, and social customs of Deaf culture from their parents, but their peers.

Distinct Folklore/Literary Tradition This is a major characteristic of a culture. Every culture has a distinct and colorful folkloric tradition. In many cases, folklore wasn’t written; it was retold. Traditional folklore was transmitted from generation to generation by parents, elder relatives, and local storytellers, who shared the history and myths of the tribe or community with the adults and children gathered together to listen and participate. These “texts” were memorized by the new generation who, in turn, transmitted them to their children.

Deaf people have a folklore. In the U.S. and Canada, this is based on ASL and utilizes dramatic storytelling, ASL humor, signplay, poetry, anecdotes, legends, and myths.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 115 Children & Hearing Loss: A Resource Notebook for Illinois Families 112

Distinct Language The language used by an ethnic, religious, or geographical community reflects its values and world-view. Each ethnic culture possesses a native language.

ASL is the native language of Deaf Americans and a number of Deaf Canadians. However, most deaf people have hearing parents and siblings. The vast majority of Deaf people don’t come from Deaf families.

Distinct Social, Sports, Recreational Institutions Virtually all cultural groups have social, recreational, and sports institutions that are organized to some degree and serve to foster group and communal loyalty, and also serve as a way to have fun within the boundaries of the community.

Team sports, like volleyball and softball, play an important role in Deaf culture. Sports are a way of expressing belonging and kinship in a kinetic way, free from communication barriers.

Deaf people enjoy participating in competitive sports with other Deaf people, and this predilection begins at schools for the deaf, where all the children participate; everyone takes turns.

Although Olympic sports are an important part of U.S. culture (to say nothing of their being a multi-billion-dollar industry), most Deaf athletes have preferred to participate in Deaf-only competitions (e.g., the Deaflympics), despite the modest perks involved, the higher expenses, and the relative lack of prestige in Hearing culture. Since easy communication is of paramount importance, most Deaf athletes opt for Deaf sports.

Deaf students in some mainstreamed settings may find themselves excluded from participation in intramural and varsity sports, due to the communication problems involved. This kind of exclusion doesn’t exist at schools for the deaf. Every child, no matter how clumsy, gets a chance to participate. That’s long been a defining characteristic of deaf culture. A few determined deaf athletes have participated in the “Hearing” Olympics.

Distinct Schools Traditionally, schools for the deaf have served as the hubs of the Deaf community. Although enrollment has been declining, due to the upsurge in mainstreamed placements, some schools are embattled, and a few have already been closed, this still holds true. Deaf children have traditionally learned ASL from other students and gained their first exposure to the norms of Deaf culture—for example, everybody takes turns participating in sports; no one is left out.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 116 Children & Hearing Loss: A Resource Notebook for Illinois Families 113

A growing number of deaf people have not attended schools for the deaf, but are graduates of mainstreamed public-school classes, day schools (oral and sign-affirmative), charter schools, or other setups. Some mainstreamed situations are excellent; others abysmally bad. A number of people who have a non-traditional (mainstreamed) background have nonetheless chosen to join the Deaf community as teens or adults. Although purists don’t consider those from mainstreamed backgrounds “strong-Deaf,” a number of respected Deaf Culture advocates have sent their deaf children to public and private schools, not schools for the deaf, so the “rule,” if there is one, isn’t absolute.

While deaf students are free to enroll in the college of their choice, a large number of them choose to attend the “Big Three”: California State University at Northridge (CSUN), National Technical Institute for the Deaf, one of the colleges of Rochester Institute of Technology (NTID/RIT), and Gallaudet University. Gallaudet was the first, and is still the only, liberal-arts college for deaf students in the world. Each of the Big Three has its own distinct Deaf community and brand of Deaf culture. Not all deaf students who attend CSUN and NTID join the Deaf community; it’s possible for a deaf student to go through an entire college career without learning how to sign or having any social interaction with other deaf people. CSUN and RIT are mainstreamed colleges; Gally is a bastion of ASL. Everyone signs there. Gallaudet alumni even have a distinct “Gally ASL” accent.

The truly distinctive characteristic of Deaf culture is the language—ASL in the United States and much of Canada—and ASL-based schools for the deaf. A growing number of deaf people have not attended schools for the deaf, but are graduates of mainstreamed public-school classes, day schools (oral and sign-affirmative), charter schools, or other setups. Some mainstreamed situations are excellent; others abysmally bad. A number of people who have a non-traditional (mainstreamed) background have nonetheless chosen to join the Deaf community as teens or adults.

The popularity of Deaf sports, Deaf performing arts, chartered Deaf tours, and Deaf social institutions (like biennial school reunions) can all be traced to the importance of ASL in our everyday lives. The basis of Deaf culture in the U.S.A. is ASL. This is testimony to the importance of communication. Accessible communication is of paramount importance in our lives, and ASL, a multi-national blend of native and foreign sign languages, has been developed and refined by generations of deaf people to serve that purpose. ~Retrieved from http://www.deafculture.com/ethnic_culture/

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 117 Children & Hearing Loss: A Resource Notebook for Illinois Families 114

Values The following are highly valued and vital aspects of everyday living by the Deaf community.

Notice the value comparisons between people who are Deaf and people who can hear.

People who are Deaf value:

People who can hear value:

ASL

Spoken language

Eyes (rely on vision)

Ears (rely on sound)

Hands/signs

Mouth/speech

Videophone (VP); Relay Service; TTY

Telephone

Visual/vibrating alerting systems

Sound alerting system

Video mail

Voice mail

Interpreters

Speakers

Captioning

Dialogue

Deaf clubs, Deaf civic and social organizations

Civic and social organizations

~Retrieved from http://www.dhs.state.mn.us

TWO VIEWS OF DEAFNESS Outline by Chris Wixtrom Originally Published in The Deaf American, Winter 1988 1st View: DEAFNESS AS PATHOLOGY

2nd View: DEAFNESS AS A DIFFERENCE

With this perspective, a person might:

With this perspective, a person might:

Define deafness as a pathological condition (a defect, or a handicap) which distinguishes abnormal deaf persons from normal hearing persons.

Define deafness as merely a difference, a characteristic which distinguishes normal deaf persons from normal hearing persons.

Recognize that deaf people are a linguistic and cultural minority.

Deny, downplay, or hide evidence of deafness.

Openly acknowledge deafness.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 118 Children & Hearing Loss: A Resource Notebook for Illinois Families 115

Seek a "cure" for deafness: focus on ameliorating the effects of the "auditory disability" or "impairment."

Emphasize the abilities of deaf persons.

Give much attention to the use of hearing aids and other devices that enhance auditory perception and/or focus on speech. Examples: amplifiers, tactile and computer-aided speech devices, cue systems . . .

Give much attention to issues of communication access for deaf persons through visual devices and services. Examples: telecommunication devices, captioning devices, light signal devices, interpreters . . .

Place much emphasis on speech and speechreading ("oral skills"); avoid sign and other communication methods which are deemed "inferior."

Encourage the development of all communication modes including - but not limited to - speech.

Promote the use of auditory-based communication modes; frown upon the use of modes which are primarily visual.

Strongly emphasize the use of vision as a positive, efficient alternative to the auditory channel.

Describe sign language as inferior to spoken language.

View sign language as equal to spoken language.

View spoken language as the most natural language for all persons, including the deaf.

View sign language as the most natural language for the deaf.

Make mastery of spoken language a central educational aim.

In education, focus on subject matter, rather than a method of communication. Work to expand all communication skills.

Support socialization of deaf persons with hearing persons. Frown upon deaf/deaf interaction and deaf/deaf marriages.

Support socialization within the deaf community as well as within the larger community.

Regard "the normal hearing person" as the best Regard successful deaf adults as positive role role model. models for deaf children.

Regard professional involvement with the deaf as "helping the deaf" to "overcome their handicap" and to "live in the hearing world."

Regard professional involvement with the deaf as "working with the deaf" to "provide access to the same rights and privileges that hearing people enjoy."

Neither accept nor support a separate "deaf culture."

Respect, value and support the language and culture of deaf people.

~Retrieved from http://www.aslaccess.org/2viewsofdeafness.htm

Individuals can choose an audiological or cultural perspective. Itâ&#x20AC;&#x2122;s all about choices, comfort level, mode of communication, and acceptance.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 119 Children & Hearing Loss: A Resource Notebook for Illinois Families 116

For more information, check out the following websites: National Association of the Deaf at www.nad.org American Society for Deaf Children at www.deafchildren.org Suggested Readings: Inside Deaf Culture, Carol A. Padden and Tom L. Humphries A Journey Into the Deaf-World, Harlan Lane, Robert Hoffmeister, and Ben Bahan Deaf Culture Our Way, Roy K. Holcomb Keys to Raising a Deaf Child, Virginia Frazier-Maiwald and Lenore M. Williams The Silent Garden: Raising Your Deaf Child, Paul Ogden Films: Audism Unveiled History Through Deaf Eyes

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 120 Children & Hearing Loss: A Resource Notebook for Illinois Families 117

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

118

Early Intervention

“I am an accountant.”

“I am a grandmother.”

“I am a cochlear implant recipient.”

“I am deaf.”

Early Intervention

~Carol Burns

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

121

Early Intervention Early Intervention (EI) is a service delivery system for families with children with a diagnosed condition, or demonstrate a developmental delay in any area of development, or are at risk for developmental delays. The Early Intervention Program in Illinois provides an array of services, designed to provide families with resources and supports to assist them in fostering their child's development.

The critical period for learning language occurs during the first five years of life and research indicates that the first three years are the most important. Therefore, children with hearing loss are at an increased risk of language delays, which may result in future difficulty with learning and social-emotional development. The earlier a child acquires language, the better chance that child has of developing typical language and communication skills. It is vitally important for you to know how to communicate effectively with your child and to work with your child to begin learning language as soon as possible. Early Intervention service providers will help you learn strategies to optimize your child’s language learning in whatever communication mode you choose. You are your child’s first and most important teacher. As a caregiver, you have the capacity to significantly shape your child's development.

Overview of the Illinois Early Intervention (EI) Program A variety of services are offered by the Early Intervention Program of Illinois. A description of the services offered and how they may benefit you and your child are listed below. A handbook for all parents titled The Illinois Early Intervention Program: A Guide for Families provides an overview of the system and is available in both English and Spanish at http://www.wiu.edu/ProviderConnections/guideFamilies.php • The DEPARTMENT OF HUMAN SERVICES (DHS) is the lead agency for Early Intervention Services in Illinois. The BUREAU OF EARLY INTERVENTION is part of DHS, and their Website is http://www.state.il.us/agency/dhs/eisnp.

• Each CHILD AND FAMILY CONNECTIONS (CFC) serves as the regional partner for DHS. CFC is responsible for ensuring the timely process of referrals to the Early Intervention System, the provision and eligibility determination services, the development of the initial Individualized Family Service Plan (IFSP), referral to service providers, and transition. For a list of CFC’s in Illinois, please visit http://www.wiu.edu/ProviderConnections/links/CFCList.html. Contact your local CFC to enroll in the program as quickly as possible.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 122 Children & Hearing Loss: A Resource Notebook for Illinois Families 119

• Each Child and Family Connections office has DESIGNATED SERVICE COORDINATORS for families of children with a hearing or vision loss. The Bureau of Early Intervention keeps a list available of current designated service coordinators.

Changes in designated service coordinator contact information should be reported by the CFC to The Bureau of Early Intervention who revise and disseminate the list at least semi-annually.

• The SERVICE COORDINATOR, employed by CFC, works with your family to ensure that you and your child receive all necessary services and supports. The service coordinator links families to resources and informs family members of their rights, obligations, and responsibilities under the Early Intervention Services System. The service coordinator assists you and the Individualized Family Service Plan (IFSP) team members in the development and implementation of the IFSP. The service coordinator also assists in your child’s transition out of the Early Intervention Services System as they approach three years of age.

• FAMILY RIGHTS in Early Intervention include: the right to a timely and free evaluation, development of a coordinated plan (IFSP), privacy, consent or refusal of services, prior notice of all meetings, evaluations, and changes in service, review of your child’s records, understanding of information, and the right to disagree. For more information about family rights in Early Intervention, refer to the booklet, State of Illinois Infant/Toddler and Family Rights Under IDEA for the Early Intervention System, available at http://www.dhs.state.il.us/page.aspx?item=32264 • Early Intervention ELIGIBILITY refers to meeting the criteria that is established in Illinois to qualify for services. Determination of eligibility for Early Intervention occurs once the audiological screening, evaluation, and assessments have been completed and received by the CFC. Children with a diagnosed hearing loss are eligible for the early intervention services if they are experiencing developmental delays of at least 30% in one or more areas of development. However, a child is automatically eligible for the early intervention program if he/she has been diagnosed with: o A hearing loss of 30 decibels (dB) or greater at any two of the following frequencies: 500, 1000, 2000, 4000 and 8000 Hertz (Hz), OR o A hearing loss of 35 dB or greater at any one of the following frequencies: 500, 1000 and 2000 (Hz) involving one or both ears.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 123 Children & Hearing Loss: A Resource Notebook for Illinois Families 120

• Following the determination of eligibility, an INDIVIDUALIZED FAMILY SERVICE PLAN (IFSP) will be developed. The IFSP is both a process and a written document that considers your family’s identified priorities, concerns, resources and important outcomes for you and your family. The IFSP will identify the types of services you and your child will need to reach your outcomes. The IFSP is reviewed and updated every six months with the entire IFSP team. As your child grows and changes, your family may need different services. Although the IFSP is reviewed every 6 months, it can be reviewed and changed more often as needed.

• SERVICE PROVIDERS are qualified professionals with an IL Early Intervention Credential, who work closely with you and your family to ensure you receive the appropriate education, resources, and supports to assist you with reaching your identified IFSP outcomes. You and the IFSP team will discuss the service options which will best support you and your family in reaching your IFSP goals. The most common services required for a child who is deaf or hard of hearing include: o assistive technology (hearing aids, ear molds, etc.), o audiology (amplification fitting, follow-up, monitoring), o aural rehabilitation (developmental therapist/hearing), o counseling, o service coordination, o speech therapy, o and family support (interpreter, deaf mentor).

• When working with providers, it’s important to ask a variety of questions in order to find a provider who is qualified, who you feel comfortable with, and who can help you achieve your goals for your child. Below are suggested questions to ask the provider: o What is your background or degree? o What training and experience do you have with hearing loss? o What training and experience do you have with infants and toddlers? What is your communication philosophy? o How do you feel about a family using more than one communication option and therapies? o How will you help my child? o Why do you do this work? o Can you help me find additional resources if needed? o Can you explain the transition process out of early intervention?

• DEVELOPMENTAL THERAPIST - HEARING SPECIALIST (DTH) is a professional with extensive knowledge regarding hearing loss and has a degree in deaf

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 124 Children & Hearing Loss: A Resource Notebook for Illinois Families 121

education. A DTH provides services that are specific to your infant’s overall development as it is directly affected by the hearing loss. DTHs can help you through the maze of amplification options, communication and language options, educational choices, assistive technology, and social issues. DTHs can explain and support the language acquisition strategies for your child who is deaf or hard of hearing.

• DEAF MENTORS are adults who have a hearing loss and consider themselves a part of the Deaf community. They make regular visits to your home to interact with your child and to share their language, culture, and personal knowledge on deafness. Deaf mentors provide a communication model, as well as a connection to the Deaf community. If you are interested in having a deaf mentor but are unable to find one through early intervention, contact Chicago Hearing Society to inquire about their Connections program, which connects Deaf Mentors with families throughout the state of Illinois, free of charge.

• To provide support for parents of children who are deaf of hard of hearing, each CFC has PARENT LIAISONS. Parent liaisons are parents of children with special needs who have experienced the Early Intervention System firsthand and can help other parents who are going through the same process.

In addition to the services described above, Early Intervention also provides services in the areas of (ask your service coordinator for more information): o o o o o

physical development (movement), cognitive development (learning), communication development (interaction), social or emotional development (behavior), and adaptive development (use of existing skills).

After identifying your family's priorities and concerns, you and the IFSP team will determine appropriate outcomes and strategies to help support you and your child's growth towards those outcomes. Remember that you, the parent, are part of the team and an important voice.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 125 Children & Hearing Loss: A Resource Notebook for Illinois Families 122

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 126 Children & Hearing Loss: A Resource Notebook for Illinois Families 123

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 127 Children & Hearing Loss: A Resource Notebook for Illinois Families 124

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 128 Children & Hearing Loss: A Resource Notebook for Illinois Families 125

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 129 Children & Hearing Loss: A Resource Notebook for Illinois Families 126

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 130 Children & Hearing Loss: A Resource Notebook for Illinois Families 127

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 131 Children & Hearing Loss: A Resource Notebook for Illinois Families 128

Organizations for Support CHOICES for Parents is a statewide coalition of parents and professionals that provides information, resources, advocacy and support to parents whose children have a hearing loss.

CHOICES for Parents supports families from diagnosis through early intervention, school placement and transitions, assisting families when needed. CHOICES for Parents created this notebook, Children and Hearing Loss, works closely with all families, including Latino families, and promotes early literacy through its READ Program. For more information, contact info@choicesforparents.org or visit the website www.choicesforparents.org (click "EspaĂąol" for Spanish).

ILLINOIS HANDS AND VOICES (IL H&V) is a statewide parent organization for families of children with hearing loss. IL H&V provides families with resources, networking opportunities, and information regardless of the communication mode they have chosen.

Ongoing parent-to-parent dialogue is a highly desirable and effective support provided through IL H&V. For more information, contact ilhandsandvoices@gmail.com or visit the website: www.ilhandsandvoices.org.

GUIDE BY YOUR SIDE, a program of IL Hands & Voices, offers parent-to-parent emotional support statewide. Parents of children who are deaf and hard of hearing have been trained to provide unbiased support and resources and to mentor other parents whose children have been identified as having a hearing loss. To request free support from a trained Parent Guide, please call 224-343-1873 or email ilhvgbys@gmail.com.

ALEXANDER GRAHAM BELL ASSOCIATION FOR THE DEAF AND HARD OF HEARING (AGBell) is another organization designed to support families of children and adults who are deaf. AGBell works as a resource, support network, and advocate for listening, learning, talking, and living independently with hearing loss. Through publications, events, outreach, training, scholarships and financial aid, AG Bell promotes the use of spoken language and hearing technology. For more information, you can email them at info@agbell.org or visit the website: http://agbell.org/.

INSTITUTE FOR PARENTS OF PRESCHOOL CHILDREN WHO ARE DEAF OR HARD OF HEARING is a week-long educational program for parents of children under the age of five who are deaf or hard of hearing. The Institute is held in June on the campus of the Illinois School for the Deaf. The Institute is an opportunity for parents to learn more about deafness and to learn about their childâ&#x20AC;&#x2122;s individual strengths and needs. It may be a first opportunity for some parents to meet face to face with other parents who have children who are deaf and to share common concerns and feelings. Families sign up through the DIVISION OF SPECIALIZED CARE FOR CHILDREN (DSCC). DSCC provides care coordination,

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 132 Children & Hearing Loss: A Resource Notebook for Illinois Families 129

information provision, and referral for any children with eligible medical conditions, not limited to hearing loss. DSCC also provides financial assistance for families who are eligible. DSCC can help families obtain hearing aids, cochlear implants, ENT (Ear Nose Throat) care, medications, educational services and other community resources that may be beneficial to families. DSCC can be contacted at (800) 322-3722. Regional Office information can be obtained from their website: http://dscc.uic.edu/.

The JOHN TRACY CLINIC also offers free Correspondence Courses for parents of deaf and hard of hearing babies and preschoolers, as well as for parents of young deafblind children.

These classes are available by mail and e-mail through John Tracy Clinicâ&#x20AC;&#x2122;s Correspondence Program. Building a language-rich environment, auditory learning, and speech and child development are some of the topics covered. More information is available at www.jtc.org.

TRANSITION from Early Intervention to school services begins when your child is 2 1/2 years old (30 months). The process officially begins when your service coordinator contacts your LOCAL EDUCATION AGENCY (LEA). Throughout the transition process, you will have the opportunity to talk with your EI team about what to expect, the differences in services and service delivery, how to prepare your child for the transition, and so forth.

NATIONAL CUED SPEECH ASSOCIATION (NCSA) provides supports to families interested in using Cued Speech/Cued English as part of their communication. The NCSA supports effective communication, language development and literacy in families with deaf, hard of hearing, or learning disabled infants, children and youth through the use of Cued Speech. They support several annual family camps and other related events to learn Cued Speech/Cued English. More information is available at www.cuedspeech.org.

NATIONAL ASSOCIATION OF THE DEAF (NAD) is the nationâ&#x20AC;&#x2122;s premier civil rights organization of, by and for deaf and hard of hearing individuals in the United States. The NAD was shaped by deaf leaders to who believed in the right of the American deaf community to use sign language and has developed an Education Advocate program to address current concerns regarding quality education and appropriate language acquisition for deaf and hard of hearing children. You can learn more at www.nad.org.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 133 Children & Hearing Loss: A Resource Notebook for Illinois Families 130

Educational Options

“I am the mother of four children.”

“I am an advocate for deaf, hard of hearing, and deafblind children.”

“I am a teacher of the deaf.”

“I am deaf.” ~Karla Giese

Educational Options

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

134

Educational Options The Facts on the Individuals with Disabilities Education Act When your child turns three years of age, he/she is no longer eligible to receive Early Intervention services and therefore transitions to special education services provided by the local school district.

The Individuals with Disabilities Education Act (IDEA), the law that governs both Early Intervention services and special education services, provides you and your child with the following rights: • A free and appropriate public education, regardless of disability.

• The State of Illinois can use Medicaid to pay for your child’s services but they cannot use your private insurance unless you agree.

• If your child receives special education services, you must be given written notice within a reasonable time before any meetings, and before any service your child receives is changed or denied. This notice must explain the procedures, the meeting or the proposed changes, and inform you of your rights.

The IDEA has several steps to qualify a child for special education service. Each step is explained in this chart: Step 1

Action Referral

Explanation A referral means sending a written request to the school district asking that a child be evaluated to determine if the child is eligible for special education services.

You have the right to request that the school district evaluate your child and give them permission to do a case study evaluation of your child.

Keep a copy of the written request at home.

Also, your child’s teacher, a community service agency or any professional can make the referral.

2

Case Study Evaluation (CSE) New Terminology: Eligibility Review

Table of Contents

Making a referral does not mean your child has a disability. The goal of a referral is to find out if your child has a disability and needs special education services.

After the referral is made, tests and evaluations are done on your child to see if your child has a disability and requires assistance in school. These tests and evaluations are called a case study evaluation (CSE).

Once the referral is made, the school district has 60 school days to complete the CSE.

Children & Hearing Loss: A Resource Notebook for Illinois Families 135 Children & Hearing Loss: A Resource Notebook for Illinois Families 131

The CSE must not be biased against your child’s race or culture.

3

Multidisciplinary Conference (MDC)

The CSE must be done in your child’s language or way of communication.

After the CSE is finished, there must be a meeting with the parents, school district, and all the people who did the CSE on the child. This meeting is called the multidisciplinary conference (MDC).

At the MDC, everyone will look at the CSE results and decide if your child needs special education.

If you don’t agree with the CSE, you have the right to ask for an independent evaluation at no cost to you. A professional who does not work for the school district can do the independent evaluation.

4

Even if your child does not qualify for special education services under IDEA, your child may be able to get help under another federal law called Section 504 of the Rehabilitation Act of 1973.

IEP (Individual If your child needs special education services, the school district must Education Program) write an Individualized Education Program (IEP) for your child.

The IEP is a written document that: • Sets reasonable learning goals for your child.

• Lists and describes the services the school district will provide for your child.

The IEP must include: • Present Levels of Performance–What your child can do now and what your child needs help with now.

• Goals and Objectives or Benchmarks–Goals are what your child needs to learn and should be able to learn over the next year, Objectives are the steps your child needs to do to reach the Goals, and Benchmarks are ways to show that your child is making progress toward each Goal. These must be specific, measurable, agreed-upon, realistic, and time-based.

• Progress Reports–Reports by school staff that let you know how your child is doing with the IEP goals, and show if objectives or benchmarks are being met. These reports should be given as often as report cards are.

Special Education Services–This describes what services your child will receive, when they will begin, how often, how long they will last, where they will be provided, and what related services are included.

Related Services–These are services that your child might need to participate in school. Such services include but are not limited to: transportation, speech-language pathology, audiology services, psychological services, physical therapy, occupational therapy,

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 136 Children & Hearing Loss: A Resource Notebook for Illinois Families 132

5

Implementation

recreation, early identification and assessment of dis- abilities, counseling, orientation and mobility services, medical services for diagnostic or evaluation purposes, school health services, social work services in school, and parent counseling and training.

The school district must begin doing everything listed in the IEP on time and must finish all the services and programs before the end of the IEP year.

It is important for all the teachers, professionals, and for the parent(s) or guardian(s) to have a copy of the IEP so they can make sure that each program and service is provided.

If you disagree with the IEP or believe that the school is not following the IEP: Always try to work with your child’s teachers and the school district first.

You can contact an attorney or advocacy organization, like Equip for Equality, to discuss your options.

6

7

Monitoring

IEP Review

If that doesn’t work, you can request a due process hearing. A due process hearing is like going to court; each side usually has attorneys and a hearing officer (judge) decides the case.

The IEP team should pick one person to make sure that all services and programs are done on time for your child.

This one person can also answer your questions and make sure that your child gets all the services and programs identified in the IEP. Your child’s IEP must be checked every year.

You also have the right to request an IEP meeting at any time – you do not have to wait a year. You can ask for the IEP meeting if there is a problem with your child’s services or program.

8

Re-evaluation

To request an IEP meeting, write a letter asking for the meeting and send it to your school case manager or special education director.

A new CSE (re-evaluation) of your child must happen at least once every 3 years.

However, you or your child’s teacher may request for a re-evaluation at any time.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 137 Children & Hearing Loss: A Resource Notebook for Illinois Families 133

Placement Options 34 CFR 300.551 (a) states, “Each public agency shall ensure that a continuum of alternative placements is available to meet the needs of children with disabilities for special education and related services.” This language is often misinterpreted as a continuum of places instead of services. Such an interpretation results in a linear model of placements often perceived as “best,” (a local classroom), to “worst,” (a residential school). The Presidential Commission on Education of the Deaf (1988) recommended the following circular model which avoids bias and misinterpretation.

In Illinois, the Illinois Best Practices Guide for the Education of Students who are Deaf/Hard of Hearing was adopted by the Illinois State Board of Education in June 2015. Below is a picture of circular model referenced in the Best Practices Guide. You can download a copy of the Best Practices Guide at http://www.ishi-il.org/deaf-education-resources

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 138 Children & Hearing Loss: A Resource Notebook for Illinois Families 134

Placement Decisions Least Restrictive Environment considerations in the IEP must include a discussion of all the placement options for these students across the full continuum of services.

Placement decisions should be based on the needs and services identified in the IEP. The severity of the hearing loss of the child as well as the child’s language and communication needs must be considered in making placement decisions. For example, children who have a slight to mild hearing loss may be placed in the general education classroom and provided speech and language, hearing impaired itinerant, or resource services whereas children with moderate to profound hearing loss may be placed in other school options that appropriately address their individual needs. IEP teams should annually review current services needed to determine if their children are appropriately placed. As children mature and change, so do their educational, emotional, and communication needs.

Options and Service Considerations The 1997 amendments to IDEA mandated service considerations for students who are deaf or hard of hearing require the following: ▪ Communication in a child’s and family’s preferred mode of communication – including direct communication and opportunities for direct communication with peers and professional personnel in the child’s language and communication mode ▪ Linguistic needs ▪ Severity of the hearing loss and potential for using residual hearing ▪ Academic level ▪ Social, emotional, and cultural needs, including opportunities for direct peer interaction and communication in academic and non-academic areas ▪ Opportunities for direct instruction in the child’s language and communication mode ▪ Whether the child requires assistive technology devices and services The 2004 IDEA updates clarify the following: ▪ Schools are only responsible for ensuring surgically implanted devices and hearing aids are functioning properly during the school day. They are not responsible for maintenance, upkeep, repairs, mapping, parts replacement, mapping, etc.

▪ Interpreting services include oral transliteration services, cued language transliteration services, and sign language transliteration and interpreting services, and transcription services, such as communication access real-time translation (CART), C-Print, and TypeWell, in addition to special interpreting services for children who are deafblind.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 139 Children & Hearing Loss: A Resource Notebook for Illinois Families 135

▪ School-purchased assistive technology devices can be used in a child’s home or other settings if the IEP team determines it necessary for the child to receive FAPE (free, appropriate public education). For example, so that the child can complete his/her homework.

▪ The IEP team MUST consider the communication needs of the child: o the child’s language and communication needs o opportunities for direct communication with peers and staff in the child’s language and communication mode o and opportunities for direct instruction in the child’s language and communication mode ▪ Cochlear implants are NOT considered assistive technology devices to be purchased by the school.

Placement options for students who are deaf or hard of hearing are listed below. All options must be available to all students who are deaf or hard of hearing to serve the changing needs of the students, which include: ▪ Home instruction ▪ Hospital schools ▪ Itinerant services (part-time instructional services, direct services, consultation) ▪ Regular classroom with or without specialized services such as consultation, monitoring, interpreting, resource, or augmentative devices ▪ Residential schools (part-time instructional services and partial mainstreaming or full-time instructional services) ▪ Resource room (part-time instructional services and partial mainstreaming or full-time instructional services) ▪ Special classes (part-time instructional services and partial mainstreaming or full-time instructional services) ▪ Special schools (part-time instructional services and partial mainstreaming or full-time instructional services) The Commission On Education of the Deaf (COED) report to the President stated: “The educational process occurs through human interaction for the purpose of transmitting knowledge. Interaction is active; students are not passive in transmitting knowledge, but rather, participants in complex interactive behaviors…”

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 140 Children & Hearing Loss: A Resource Notebook for Illinois Families 136

A positive self-concept, created through symbolic human interaction, enhances learning and is crucial for each child, disabled or not. However, when the child has a disability which profoundly impacts communication, interaction with others and learning in the classroom will be superficial. A student’s emotional stability and self-identity are at risk if the student is unable to communicate directly with peers and educational personnel. If a child has low selfesteem, tends to withdraw, or exhibits inappropriate behavior, the IEP should address the child’s emotional well-being. Such a child needs direct communication in a language and mode shared by peers and adults who are deaf or hard of hearing. Once the child is directly able to participate in a complex interaction both in and out of the classroom, self-esteem is raised and learning takes place.

A critical mass of 40-50 students who are deaf or hard of hearing is essential for the development of social skills, language and communication skills, emotional well-being, and cultural identity. These critical masses are generally available at cluster sites, special schools and residential schools for the deaf and hard of hearing.

Considerations for Students Who Are DeafBlind Since the combination of vision and hearing loss compounds the disability, the term deaf-blind is used, and students must receive services based on both vision and hearing needs. While IDEA specifically uses the hyphenated word “deaf-blind”, other words are also used. In educational systems, the word “deaf-blind” or “deaf-blindness” is used.

Like students who are deaf and hard-of-hearing, students with deaf-blindness often have additional disabilities including intellectual disabilities, physical disabilities, and other health impairments. Project Reach, the agency that completes the required national count of students with deaf-blindness, notes that annually there are at least 400 – 420 Illinois students age birth – 21, and of these students at least 70% have additional disabilities. (https://nationaldb.org/library/page/2199).

A student who is deaf-blind may use many of the oral/aural or visual/sign modes described for persons who are deaf depending on their vision loss, onset and progression of sensory losses, and any additional intellectual/educational challenges. If the vision and hearing loss are severe, the addition of tactile modes may be necessary. If the student has lost vision and hearing after being able to read, Print on Palm may be used for communication. Using the student’s hand as a base, the speaker draws in capital block letters on the student’s palm with an index finger.

The use of a raised alphabet card or an alphabet glove may aid in communication if the student knows no sign language. Information on these systems is available at http://www.hknc.org/Guidelines.html

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 141 Children & Hearing Loss: A Resource Notebook for Illinois Families 137

Braille may become an important tool in communication if the student lost vision first, and later acquired hearing loss. The knowledge of braille would be important in order to use various lowtech and high-tech communication devices. Examples include Braille/Print Alphabet Cards and the Deafblind Communicator.

Service Delivery Models Students who are deaf or hard of hearing have unique needs that may require special programs.

Since this is a low incidence disability which profoundly affects communication and language, the educational and social-emotional needs of the students are best met by a critical mass of students who can directly communicate with each other as well as every person who provides services in the educational programs of the students. I.D.E.A. law emphasizes that service providers be able to communicate in the language and mode of the students. These children need a variety of support services and programs throughout their school careers. A full continuum of services must be available in the State of Illinois to meet these unique needs.

Special Education Cooperative Agreement Sites (Co-op sites) Co-op sites provide services to students who are deaf or hard of hearing. These programs typically maintain a population of at least 40-50 students. With large numbers of students, coop sites can provide a variety of curricular options and extracurricular activities which meet the unique communication, language, and social needs of the students. Professional staff who work with these students are required to provide services in the language and communication mode of the students. Students have opportunities to participate in mainstream school life, both in classes and extracurricular activities. The students are also able to develop close social contacts with a number of peers who are deaf and can experience and learn about deaf culture. On-site supervision of co-op programs is generally provided by supervisors certified both in educational administration and education of the deaf and hard of hearing.

Academic options available to students at co-op sites should include: self-contained community-based classes; functional academic classes which teach the application of academic skills to daily life; self-contained academic classes with a typical, elementary through high school curriculum with modifications; and academic mainstreaming.

A large percentage of students who are deaf or hard of hearing have secondary disabling conditions â&#x20AC;&#x201C; such as behavior disabilities or learning disabilities â&#x20AC;&#x201C; in addition to their hearing loss. Cluster sites can provide special, related services such as occupational /physical therapy, social work, speech/language therapy, and counseling. These can all be provided by professionals skilled in sign language and familiar with the needs of students who are deaf or hard of hearing.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 142 Children & Hearing Loss: A Resource Notebook for Illinois Families 138

Inclusive Settings School districts provide regular education classrooms in their neighborhood schools for students who are deaf or hard of hearing. A variety of support services can be provided in these inclusive settings. They may consist of inclusion facilitators who are certified teachers of students who are deaf or hard of hearing, interpreters, note-takers, speech and language pathologists, audiologists, counselors, and amplification equipment. These related services in regular education classrooms must be provided by staff who can directly communicate with the students in their language and mode.

Students are given complete access to both the full general education curriculum as well as extra-curricular activities. An inclusion facilitator or itinerant teacher often acts as a case manager to coordinate all the general and special education services indicated on the studentâ&#x20AC;&#x2122;s IEP. Itinerant Services Itinerant teachers provide direct instruction or consultation and monitoring. These teachers should be hired by the special education cooperative, regional program, or local school district.

Students who need direct instruction services are seen on a regular basis, as determined by their IEPs. Itinerant teachers use specialized techniques in a variety of skill areas related to the studentsâ&#x20AC;&#x2122; disabilities to help them work toward the goals established on their IEPs. Students receiving consultative services have their needs met through on-going contact between the itinerant teachers, classroom teachers, and other school personnel. Itinerant teachers are very involved in the identification and follow-up of children who fail the required school hearing screening. Inservice presentations for students and staff members are a vital part of the duties of itinerant teachers.

Oral Schools Within the state of Illinois, there are private oral schools and some classrooms within some public schools that use an auditory-oral approach with students who are deaf or hard of hearing.

The goals of this approach are to give the students the necessary spoken language skills to be mainstreamed in a regular classroom and to function independently in the hearing world.

Students receive intense instruction on how to use their residual hearing to develop listening, speech and language skills. Sign language is not used in this approach. Early intervention and consistent amplification is essential. Speech development requires a great deal of time, effort from the child, and strong parent support. Small, self-contained classrooms focusing on the

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 143 Children & Hearing Loss: A Resource Notebook for Illinois Families 139

development of spoken English, speech and listening skills are essential for success. The teacher-student ratio is typically 1:4 in these classrooms. Special knowledge and techniques are essential for the individualized instruction needed in this approach. Most oral schools also have parent/infant programs which can bring together parents and their child who is deaf or hard of hearing, as well as a variety of professionals to work as a team to provide early education, guidance, and family support.

Residential Schools Illinois provides a comprehensive educational and residential program for students who are deaf and hard of hearing between the ages of 3 through 21 at the Illinois School for the Deaf in Jacksonville. For the birth to three population, there is also a parent-infant program which provides comprehensive services. The school curricula offer a wide variety of options and follow standards prescribed for a typical elementary through high school programs as established by the Illinois State Board of Education. Modifications are made as necessary to meet individualized needs of students.

At the school, a variety of communication modes are utilized to ensure direct communication with the students. Communication modes utilized across the campus in a variety of settings include American Sign Language, Cued Speech, and Listening and Spoken Language. All personnel at the school – administrators, educators, vocational staff, related service providers, psychologists, speech pathologists, aides, recreation workers, extracurricular supervisors, residential workers, and nurses – communicate directly with the students using the most appropriate mode of communication to meet each student’s individual needs.

Students have opportunities for a full range of related services, which includes mainstreaming in local public schools – as appropriate to their IEPs. Additionally, students participate in numerous extracurricular activities, such as athletics, student body government, and leadership organizations.

The Career Technical Education program includes school-to-work experiences and a wide range of vocational courses.

The parent-infant program brings together parents, their infant or toddler who is deaf or hard of hearing, and a variety of professionals to work as a team to provide early infant education, parental guidance, and family support. The parents participate as members of the team to develop an Individualized Family Service Plan to meet the specific strengths and needs of the family.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 144 Children & Hearing Loss: A Resource Notebook for Illinois Families 140

Specialized Schools In Illinois, there are some additional specialized schools that target those students who are deafblind, use Cued Speech, or need intensive behavioral supports. These programs are considered non-public programs under the Illinois State Board of Education (ISBE) and are bound to the same standards as other ISBE approved schools throughout the state.

Programming is individualized and designed to follow the individual IEPs of the students.

CHOICES for Parents can help you get in touch with schools and programs specializing in working with children who are deaf, hard of hearing, or deafblind throughout the state of Illinois.

You Can Be Your Child's Best Advocate Educate Yourself Learn all you can about your child and his/her hearing loss. You can get help or information from many people and places, including advocacy organizations, your child’s doctor, therapist, teachers, and other parents. Internet sites offer much information and you can explore by using keywords such as deafness, education, total communication, oral schools, etc.

Get Organized You will get many documents from the school, the doctor, and others. These include letters, consent forms, school records, evaluations, individualized education programs (IEP), progress reports, meeting notes, and many other important papers. It is important to keep all these papers together. Have a drawer, file or binder to keep all these special education papers together in one place in the order you receive them. Many parents suggest that a good way to keep track of all these papers is to make a binder. A three-ring binder will help you keep all the important papers in one place. Each time you write notes, put them in the binder. Each time you get any letters or documents from the school, put it in the binder. When you need to go to a meeting with the school about your child’s education needs, bring your binder of current information with you (i.e., recent audiograms, test results, etc.). Always give a copy to the program to keep as well. Be sure to ask the school for your child’s records each year.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 145 Children & Hearing Loss: A Resource Notebook for Illinois Families 141

Take the Time You Need Planning your child’s education will take a lot of time. Make sure you are provided the time needed to understand and plan your child’s education. You have the right to ask to reschedule a meeting if you feel you did not have adequate time to discuss, or are not happy, or if you are unsure what is happening with your child’s education plan. You should be well prepared for the meeting with questions and requests to keep the meeting as productive as possible.

Be Prepared Prepare and use checklists for the meetings. Research everything before the meeting so you are ready. Review every document in your notebook before the meeting. Know what your child needs and be ready to ask for it at the meeting. For example, if your child needs special equipment to learn in school, you need to be ready to ask the school for this equipment and where the school might be able to get it. If you learn that there will be a meeting, find out the purpose. If you have other reasons or issues that you want to discuss, be sure to let the school know before the meeting so they can be ready to discuss your issues. Sometimes it is good to bring someone along to act as a note taker for you at the meeting.

Read Correspondence Every time you receive a letter from the school, read it carefully. If the letter says there will be a meeting, it should tell you who will be at the meeting, what the meeting is about, where the meeting will be, and when the meeting will be held. If you do not understand the letter, call the school and ask them to explain. The school must inform you every time they want to change your child’s education plan or take any kind of action with your child. If you do not read or respond to letters from the school, then the school might go ahead and change your child’s education plan or take some kind of action with your child. Find out who your best contact person at the school is so you can direct questions or concerns to them.

Put It in Writing Every time you ask the school to do something, make sure you make this request in a letter or some kind of written document. You need to have proof that you asked the school. Every time you make a request in writing, make sure you include your child’s name, school, and birth date.

Make sure you date the letter, make your request clear so the school knows what you want and

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 146 Children & Hearing Loss: A Resource Notebook for Illinois Families 142

sign the letter. Try to send all your letters to the school through certified mail, return receipt requested. Always make and keep a copy of the letter that you send to the school, and keep a copy of the return receipt when you get it from the post office. Staple the return receipt to the letter, and this will be your proof that the school got your letter. It is also good to follow-up meetings with a letter that restates what you understand will take place and to thank them for the meeting.

Attend Parent Trainings You can learn a lot from parent trainings. You can also make friends with and get information from other parents at the trainings. Equip for Equality offers parents trainings by advocates who are experts with special education issues and laws. Illinois School for the Deaf Outreach also offers parent trainings. You should go to parent trainings before going to any meeting with the school, so you can be ready for the meeting.

Family Resource Center on Disabilities provides trainings in both English and Spanish. An excellent website to learn more about your rights and special education law is www.wrightslaw.com Network Find other parents of children with disabilities. You can meet those parents at parent trainings, support groups, or at your childâ&#x20AC;&#x2122;s school. Most likely, your child is not the only child receiving special education services at the school. Ask your classroom teacher or program supervisor to help connect you with others. Contact CHOICES for Parents or Illinois Hands & Voices Guide By Your Side for one-on-one and family support, as well as parent gatherings and workshops/trainings.

Find an Advocate The special education process is difficult for any parent. An advocate can help you understand what your child needs in school. The advocate can support you and go to meetings with you so you do not feel alone when the school has many teachers and therapists at the meeting. The advocate can also take notes for you. Not just anyone is an advocate. Contact a special education lawyer, support agency, or other parents to find this special person.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 147 Children & Hearing Loss: A Resource Notebook for Illinois Families 143

Involve Your Child When possible, involve your child in his/her educational program. Encourage your child to tell you and the school what he/she wants.

Help your child understand their disability as they grow older.

Communicate with the School Learn who the people are at your child’s school. Meet and talk with your child’s teachers, the principal, and therapists. Get to know these people at your child’s school and get involved in your child’s education. Sending a small journal or notebook to school with your child is a great way to keep in touch with the teachers and therapists working with your child. Your teacher can alert you to your child’s homework, progress, problems, and other updates. You can also share information with the staff about significant events in your child’s life or any concerns or progress you may see. Plan to observe the class at least twice a year. Ask teachers to videotape a lesson or therapy session.

Be Polite, Assertive, & Persistent How you treat people is important. Be respectful. You should focus on what your child needs in school. Share with professionals what you think your child needs; be assertive, yet polite.

Put your requests in writing and record responses you receive. If you are greatly concerned you are not being heard, request a staffing/meeting. Work in a collaborative manner.

Visit Classrooms and Observe Before placement decisions are made, it is a good idea to visit and observe classrooms. After placement decisions have been made, it is a good idea to visit your child’s classroom to observe and ensure he/she is in the appropriate educational setting. When visiting classrooms and observing, there are a variety of tools available to guide you in knowing what to look for.

Some observation checklists are available from the Supporting Success for Children with Hearing Loss website http://successforkidswithhearingloss.com/wpcontent/uploads/2011/08/PARC_2011-Chap-7.pdf

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 148 Children & Hearing Loss: A Resource Notebook for Illinois Families 144

The IEP Document COMMONLY ASKED QUESTIONS What is in the IEP? In each state or school district, the IEP form can look different. Under the IDEA law, the items below must be in every IEP. Each of these is discussed in detail below: Your child’s present levels of educational performance.

Annual goals and short-term objectives.

How your child’s progress will be measured.

The specific special education, related services, and supplementary aids and services to be provided to or on behalf of your child, including program modifications or supports for school staff.

5. An explanation of the extent (if any) to which your child will not participate with nondisabled children.

6. Any modifications your child will need when taking state or district-wide assessment.

7. The dates when services will begin and end, the amount of services, as well as how often and where they will take place.

8. How you will be informed of your child’s progress.

9. By age 14, a statement of your child’s transition service needs, focusing on courses to be taken, and by age 16, a statement of your child’s transition service needs, including the roles of other agencies.

10.Beginning at least one year before your child reaches the age of adulthood (18-21, depending on your state law), the IEP must include a statement that your child has been informed of any rights that will transfer to him or her upon reaching this age. Reaching the age of adulthood is called the “age of majority” in the IDEA. 1.

2.

3.

4.

~Reprinted from The Listening Room website: www.hearingjourney.com

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 149 Children & Hearing Loss: A Resource Notebook for Illinois Families 145

The IEP Meeting COMMONLY ASKED QUESTIONS What is the purpose of an IEP meeting?

The IEP has two general purposes: 1. To set reasonable learning goals for a child, and 2. To state the services that the school district will provide for the child.

Where and when do IEP meetings take place?

You and the school agree on where and when to have the IEP meeting. Usually, meetings are held at school during regular staff time. This means the meeting can happen before, during, or after the regular school day. By law, the school must tell you in writing: ✓ ✓ ✓ ✓

What the purpose of the meeting is; The time and place for the meeting; Who will be there; and That you may invite other people who have knowledge or special expertise about your child to the meeting.

ALSO, ✓ The IEP must be done no more than 30 calendar days from the date your child is found eligible for special education services. ✓ You must agree to the program, in writing, before the school can carry out your child’s first IEP. ✓ The IEP must be reviewed at least once every 12 months.

Who attends the IEP meeting?

Under the IDEA, certain people must be part of the IEP team. It is important to note that there doesn’t have to be a different person for every role. Often one person can carry more than one responsibility on the team. IEP team could consist of: 1.

2.

3.

4.

You, as Parent(s) School Administrator General Education Teacher - if the child participates in the general education curriculum Special Education Teacher

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 150 Children & Hearing Loss: A Resource Notebook for Illinois Families 146

5. Evaluation Personnel - school psychologist 6. Your child - if appropriate 7. Therapists or other professionals 8. Translators or interpreters 9. Transition personnel 10.Others with knowledge or special expertise about your child What do different team members bring to the IEP process?

There are many people who are a part of the IEP team and each person will share his or her own point of view and experience. Specifically, the following team members might share the following information about your child: 1. The Special Education Teacher will share information about how your child learns, behaves in the classroom, interpretation of assessment results and any additional concerns and needs that will influence your child’s IEP plan. The Special Education Teacher may take the lead in developing your child’s goals and objectives.

2. The General Education Teacher knows the curriculum for your child’s grade level and what students in general education classes are typically expected to do. If your child is going to participate in the general education classroom, the teacher will spend time discussing the transition, support and expectations.

3. The Parent(s) bring very important information to the IEP meeting. You know your child better than anyone. Your knowledge can steer the team toward creating an IEP that will work best for your child.

Your job at the IEP meeting is to: • • • • • •

Table of Contents

learn and understand the process share information ask questions offer suggestions keep the team’s focus on “the big picture” and your child’s long-term needs speak up on your child’s behalf

Children & Hearing Loss: A Resource Notebook for Illinois Families 151 Children & Hearing Loss: A Resource Notebook for Illinois Families 147

Being actively involved in your child’s IEP is your choice. To help you participate, the school must make reasonable efforts to: • • • •

schedule the IEP meeting so that you can attend provide an interpreter for you, if needed inform you about the meeting inform you of your rights

However, if you decide not to participate in writing your child’s IEP, the school can hold the IEP meeting without you.

4. Your Child. Depending on his or her age, your child can play an important role during the IEP meeting. Requests and suggestions that come directly from your child can carry more weight than when you voice them. Many parents are sometimes surprised when they hear their children speak about their disability, their educational desires, and their goals for the future. And sometimes teacher learn things about their students that they didn’t know before.

5. The Administrator at the IEP must know what resources the school has available. This person must also have the power to commit the resources needed so that services can be provided as outlined in your child’s IEP. What happens at the IEP meeting?

At the IEP meeting, the team will develop, review, and/or revise the IEP document. You and the team members will work to create an IEP that is educationally appropriate and that everyone can agree on. Before meeting, school staff usually write down their ideas of what needs to be in your child’s IEP. It’s a good idea for you to jot down what is most important to you so that you can share your ideas with other members of the team before the meeting, if you wish.

During the meeting, each person takes a turn in the discussion. Part of the discussion will include talking about: 1.

2.

3.

4.

5.

Your child’s strengths Your concerns The results of your child's most recent evaluations The results of any general state or district-wide assessments your child has taken Asking and answering the following questions that are sometimes referred to as “special factors” or “special considerations.” These questions are:

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 152 Children & Hearing Loss: A Resource Notebook for Illinois Families 148

a. Does your child have communication needs? b. Does your child need assistive technology services and devices? c. Does your child’s behavior interfere with his or her learning or the learning of others? d. Does your child have a visual impairment and need instruction in or use of Braille? e. Is your child deaf or hard of hearing and have language and other communication needs? f. Does your child have language needs related to his or her IEP, because English is not his or her first language?

If the answer to any of these questions is “yes,” the team will talk about what your child needs and include this information in the IEP. Usually, your child’s primary teacher goes first. The teacher begins with how your child is doing in school. He or she will describe your child’s strengths and needs and how the disability affects your child throughout the school day. Then specialists, like a physical therapist or a speech therapist, will discuss how your child is doing in these areas. They will talk about your child’s needs and how they plan to support your child’s education. Goals and objectives, related services, and all the required parts of the IEP will be discussed and decided on. It is important to remember that you as the parent are an equal member of the team and should plan to share your thoughts and ideas as well. Keep in mind that the IEP meeting is a brainstorming session.

The main purpose of the meeting is to agree on each part of the IEP so that the document can be written and services can start.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 153 Children & Hearing Loss: A Resource Notebook for Illinois Families 149

Parent Checklist—How to Advocate for Your Child 1. Openly discuss the goals you have for your child with school personnel.

2. Be familiar with the Law • The Individuals with Disabilities Education Act (IDEA) • The Rehabilitation Act of 1973 • The Americans with Disabilities Act (ADA) • Specific laws of your state’s Department of Education 3. Prepare for the IEP • Find out what programs are available in your district.

• Gather and review all your child’s records from various professionals and school district.

• List your goals for your child.

• Talk with other parents within and outside of your area.

4. Attend the IEP • Present yourself as an equal member of the team.

• Bring all your notes and records.

• Take notes.

• Keep on topic.

• If you need to talk with your spouse, ask for a break.

• Remember that the team must work together for your child’s success.

5. Follow-up • Write a summary of the meeting from your perspective.

• Obtain and review IEP report from school.

• If necessary, call or schedule another meeting to discuss any concerns.

• Communicate often with your child’s educational team.

• Keep up to date file of your child’s records.

• Share information between school and programming center. ~Reprinted from The Listening Room website at www.hearingjourney.com

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 154 Children & Hearing Loss: A Resource Notebook for Illinois Families 150

â&#x20AC;&#x153;When I'm 3, Where Will I Be?â&#x20AC;?

When I'm 3, Where Will I Be? A Family's Transition Workbook is a product of the Illinois Birth - 5 Transition Guidance Committee in collaboration with the Illinois State Board of Education (ISBE) and the Illinois Department of Human Services (IDHS). A formal transition process begins when your child is 2 years, 6 months of age. This workbook was developed by parents and early intervention and school personnel to provide information as you approach your child's transition from Early Intervention services.

The workbook can be found at http://www.isbe.net/earlychi/pdf/transition_workbook.pdf

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 155 Children & Hearing Loss: A Resource Notebook for Illinois Families 151

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

152

Resources ~ Local, State & Federal “I am a business owner.”

“I am a Mac OS X guru.”

“I am a private pilot student.”

“I am deaf.” ~Melvin Patterson

Children & Hearing Loss: A Resource Notebook for Illinois Families

156

Resources— Local, State, and Federal

Table of Contents

State of Illinois Resources Adventist Hinsdale Hospitalâ&#x20AC;&#x2122;s Pediatric Hearing Program 222 E. Ogden Ave., Hinsdale, IL 60521 Voice Number: 630-856-7500 Fees: Varies Website: https://www.keepingyouwell.com/ahh/care -services/hearing/pediatric-hearing Languages Used: English Description: The Adventist Pediatric Audiology and Cochlear Implant Program, specializing in aural rehabilitation and placement of cochlear implants, has been designed to evaluation and treat children of any age with a hearing disorder. Our pediatric audiology program is located at Adventist Paulson Pediatric Rehab, which provides a state-of-the-art facility in a child-friendly atmosphere. We offer advanced pediatric audiology services that are conveniently located.

American Hearing Impaired Hockey Association (AHIHA) 4214 W. 77th Place, Chicago, IL 60652 Voice Number: 978-922-0955 Email Address: kkmm2won@aol.com Website: www.usadeafhockey.org Languages Used: English Description: The American Hearing Impaired Hockey Association (AHIHA) pro- vides deaf and hard of hearing hockey players the opportunity to learn about and

Table of Contents

improve their hockey skills through our program. AHIHA welcomes all levels of hockey players, boy and girls, with a hearing loss to participate in our hockey camp typically held in June in Woodridge, IL. Instruction is available for hockey players from the very beginner who can barely skate, to those interested in trying out for the USA Deaflympic Hockey Team.

Alexander Graham Bell Montessori School - AEHI (AGBMS-AEHI) 9300 Capitol Drive, Wheeling, IL 60090 Voice Number: 847-850-5490 Fax Number: 847-850-5493 Email: info@agbms.org Fees: Varies Website: www.agbms.org Languages Used: English and ASL Description: AGBMS-AEHI provides a complete total communication program including Cued Speech, spoken English, and Sign Language. The goal is to educate deaf and hard of hearing children, ages 6 weeks to 15 years old, alongside their hearing peers. AGBMS-AEHI is approved by the Illinois State Board of Education. IEP's are implemented by a teacher of the deaf and speech pathologist to provide full educational opportunity and age appropriate literacy skills. Cued Speech workshops are given on a regular basis. Early Intervention support is provided.

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

157 153

Ann & Robert H. Lurie Children's Hospital of Chicago 225 E. Chicago Avenue, Box 3148, Chicago, IL 60611-2605 Voice Number: 312-227-0480 Fax Number: 312-227-9657 Fees: Varies Email: cochlearimplant@luriechildrens.org Website: https://www.luriechildrens.org/en-us/careservices/specialties services/audiology/Pages/index.aspx Languages Used: English and 180 different languages Description: The Department of Audiology at Ann & Robert H. Lurie Children’s Hospital of Chicago, formerly Children's Memorial Hospital, is a community leader committed to providing quality diagnostic services facilitating early identification and intervention of children with hearing loss. Services include complete diagnostic testing for children of all ages as well as hearing aid assessment and fitting. Lurie Children's Cochlear Implant Team is made up of hearing specialists from many disciplines, including: Audiology, Speech Pathology, Psychology, Social Work, Music Therapy, and Deaf Education and provides comprehensive evaluations and after-care services for children in need of this medical device.

Table of Contents

Aspire Children’s Services 3235 W Montrose Ave, Chicago IL 60618 Voice Number: 773-878-7868 Fees: As determined by Early Intervention System/Private Insurance/Sliding Fee Scale Email Address: kids@aspirechicago.com Website: https://www.aspirechicago.com Languages Used: English Description: Family centered program for children with developmental disabilities and their families. Individual therapy, parent – child groups, and orthopedic clinics are provided as well as parent education/support services and individual educational supports and inclusive education consulting.

Auditory Verbal Center of Wheaton c/o Lynn A. Wood MA, CCC-A, LSLS Cert. AVT 0N741 Woodlawn Street Wheaton, IL 60187 Voice Number: 630-682-4051 Facetime: 630-715-1893 Fax Number: 630-423-9548 Fees: Private Pay, In-Network, or coordinates with medical insurance Email Address: Lynn@HearSayLW.com Facebook: Auditory Verbal Center of Wheaton - Lynn A. Wood, Rehab Website: www.HearSayLW.com Languages Used: English

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

158 154

Description: Lynn is a rehabilitative audiologist and auditory verbal therapist who specializes in pediatric auditory verbal therapy, post cochlear implant rehab for both children and adults, and therapy for auditory processing needs.

Families are encouraged to schedule a complimentary consultation to learn more.

Lynn presents at local, state and national conferences and has worked internationally to provide auditory verbal therapy. She also is an active consultant in the field of auditory rehabilitation to companies and schools and mentors professionals working toward Listening and Spoken Language certification.

Bureau of Early Intervention (EI) 823 East Monroe St., Springfield, IL 62701 Voice Number: 217-782-1981 Fax Number: 217-524-6248 Fees: Sliding Fee Scale/Private Insurance Email Address: DHS.WebBits@illinois.gov Website: www.dhs.state.il.us/ei Languages Used: English Description: Family-centered service system to find and help children less than 36 months of age who have disabilities, developmental delays, or are at risk of substantial developmental delays.

Regional entities conduct intake, determine eligibility, develop Individualized Family Service Plans (IFSP), and provide service coordination.

Table of Contents

CAIRS (Chicago Area Interpreter Referral Service) 4801 Southwick Drive, Suite 610, Matteson, IL 60443 Voice Number: 312-895-4300 Fax Number: 312-895-4313 Fees: Call for current rate Email Address: info@cairs.net Website: www.cairs.net Languages Used: English Description: CAIRS provides sign language interpreters to the deaf and hard of hearing communities.

Carle Foundation Hospital ECHO* Program - Pediatric Hearing Center * Expanding Children's Hearing Opportunities

611 West Park Street, Urbana, IL 61801 Voice Number: 217-383-4375 TTY Number: 217-383-3137 Fax Number: 217-326-2336 Fees: Varies; DSCC-approved and Early Intervention credentialed, most major insurances accepted including Illinois Medicaid.

Email: echo@carle.com Website: www.carle.org/echo Languages Used: English, Signed English, Interpreters available Description: The ECHO Pediatric Hearing Center is a family-centered diagnostic, therapeutic and educational facility utilizing a multi-disciplinary team

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

159 155

approach. They serve children from birth to 21. They provide diagnostic assessments, speech/language evaluations and therapy, hearing aid and FM fittings in addition to comprehensive cochlear implant services.

Carle Foundation Hospital ECHO* Program - Carle Auditory Oral School * Expanding Children's Hearing Opportunities

805 West Park, Urbana, IL 61801 Voice Number: 217-326-2824 Fax Number: 217-326-2336 Email: caos@carle.com Fees: Based on sliding scale; No child with educationally significant hearing loss will be turned away based on inability to pay school tuition.

Website: www.carleschool.org Languages Used: English Description: Carle Auditory Oral School is an ISBE-approved auditory-oral school for children from preschool through second grade. This family-centered school utilizes theme-based units of study with normally hearing peers in each classroom.

Daily individual therapy, mainstream support, and before and after care are other key components of this program. Teletherapy is also offered.

Catholic Office of the Deaf 3525 S. Lake Park Avenue, Chicago, IL 60653-1402 Voice Number: 312-534-7899

Table of Contents

Fax Number: 312-534-0394 Videophone: 312-957-4766 Facebook: https://www.facebook.com/deafchurchchic ago Fees: Varies Email Address: cathdeafch@archchicago.org Website: http://deafchurchchicago.weconnect.com/ Languages Used: English, ASL, Spanish provided Description: An agency of the Archdiocese of Chicago providing spiritual and social services for ALL deaf and hard-of-hearing persons in Lake and Cook Counties, primarily Catholic.

Advocacy, information and referral, pastoral counseling, religious education, interpreted mass, spiritual and personal assistance are offered regardless of religious affiliation.

Center for Sight & Hearing 8038 MacIntosh Lane, Rockford, IL 61107 Voice Number: 815-332-6800 Fax Number: 815-332-6810 Fees: Varies Email: info@centerforsighthearing.org Website: www.centerforsighthearing.org Languages Used: English, ASL Description: The Center for Sight & Hearingâ&#x20AC;&#x2122;s mission is to help individuals with a vision and/or hearing loss enhance

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

160 156

their quality of life and live independently.

The Center fulfills that mission through a low vision clinic, hearing clinic, communication services, employment services, social activities, and Simple Solutions Demo & Sales Center.

Chicago Hearing Society (CHS), a division of Anixter Center 2001 N. Clybourn Ave., Chicago, IL 60614 Voice Number: 773-248-9121 Videophone: 773.904.0154 TTY Number: 773-409-1544 Fax Number: 773-575-4841 Fees: Varies Email Address: AskCHS@anixter.org Request an interpreter via email: CHSInterp@anixter.org Website: www.ChicagoHearingSociety.org Languages Used: English, Spanish, ASL Description: CHS provides a range of services that empower deaf, deafblind, hard of hearing and hearing people to communicate with each other, without promoting one means of communication over another. Programs include: interpreter services (ASL, CDI, VRI, Spanish/ English, CART), Hearing Health Clinic (hearing aid sales, service, hearing aid banks), free amplified and captioned phones, social services and advocacy, domestic violence and victim assistance support, youth program (ARMED adult role modeling, Deaf Mentors, teen leadership), CHOICES for Parents

Table of Contents

support, Senior Health Insurance, and tax filing programs.

Child's Voice 180 Hansen Court, Wood Dale, IL 60191 Voice Number: 630-595-8200 TTY Number: 630-595-8200 (call ahead) Fax Number: 630-595-8282 Fees: Daily rate set by ISBE Email Address: Info@childsvoice.org Website: www.childsvoice.org Languages Used: English Description: A Listening and Spoken Language program for children with hearing loss and their families. The early intervention programs in Wood Dale and Chicago offer initial evaluations, homebased therapies, toddler group classes, and parent education and support. The school program in Wood Dale, which serves children between the ages of 3-8, provides aural (re)habilitation, speech therapy, early academics, and mainstream support. Full audiological services are provided onsite in Wood Dale. The Audiology department runs the Pediatric Early Hearing Detection and Intervention program, which offers diagnostic testing via un-sedated Auditory Brainstem Response testing (ABR) for those infants who did not pass their newborn hearing screening, thereby allowing early access to sound and intervention services. Child's Voice Audiology also accepts all pediatric patients for testing and device

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

161 157

support. Child's Voice is a Certified Moog Program.

Email Address: info@ciafonline.org Website: www.ciafonline.org

Other locations: Child's Voice (Chicago) 1846 W. Belmont Ave. Chicago, IL 60657 Voice Number: 773-516-5720 Fax Number: 773-516-5721 Email Address: Info@childsvoice.org

Description: CIAF's mission is simple: To help more people hear via cochlear implants. CIAF provides information, awareness, and resources for cochlear implant recipients and their families.

Additionally, CIAF has a cochlear implant inventory bank. CIAF accepts used but not abused cochlear implant equipment and pairs the equipment with needy recipients. Merit based on need. Each person requesting assistance must fill out an application.

CHOICES for Parents P.O. Box 646, Highland Park, IL 60035 Voice Number: 866-733-8729 Videophone: Fax Number: 312-277-0997 Fees: None Email Address: info@CHOICESforParents.org Website: www.CHOICESforParents.org Languages Used: English, ASL, Spanish Description: CHOICES for Parents is a statewide coalition of parents and professionals providing immediate access to support, advocacy, information and resources to families of children with identified hearing loss. Supports READ Days, READ Kits, EHDI Day, and sign language classes in Spanish and English for all ages. Maintains and updates the Children and Hearing Loss Resource Manual.

Cochlear Implant Awareness Foundation (CIAF) 130 South John, Rochester, IL 62563

Table of Contents

Congregation Bene Shalom 4435 Oakton, Skokie, IL 60076 Voice Number: 847-677-3330 Videophone: 224-534-0029 Fax Number: 847-677-7298 Website: www.beneshalom.org Description: Congregation Bene Shalom/ Hebrew Seminary of the Deaf is a reform temple that has served the Deaf and Hearing Communities of the Chicago area for the past 32 years. Under the spiritual guidance of Rabbi Douglas Goldhammer, holiday and Shabbat services are performed in English, Hebrew and ASL. Division of Specialized Care for Children (DSCC) - University of Illinois at Chicago 3135 Old Jacksonville Road, Springfield, IL 62704-6488

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

162 158

Voice Number: 217-558-2350 TTY: 217-785-4728 Fax Number: 217-558-0773 Fees: None Email Address: dscc@uic.edu Website: www.dscc.uic.edu Languages Used: English, Spanish Description: Specialized Care for Children is a state partner that provides care coordination and cost-supported diagnosis for children birth to 21 years of age. For children with chronic health impairments supported by DSCC financial assistance is available for eligible families.

DSCC supports non-investigational treatment recommended by a physician or specialist, such as therapy, medications, specialized equipment (such as hearing aids) and supplies.

Equip for Equality (EFE) (Northeastern Illinois) 20 N. Michigan Avenue, Suite 300, Chicago, IL 60602 Voice Number: 312-541-7544 Toll-Free Number: 800-537-2632 TTY Number: 800-610-2779 Fax Number: 312-541-7544 Fees: None Email Address: Contactus@equipforequality.org Website: www.equipforequality.org Languages Used: English, ASL, Spanish (Most languages can be accommodated using Tele-Interpreters, LLC. American

Table of Contents

Sign Language interpreters can also be scheduled.)

Description: Equip for Equality is an independent, private, not-for-profit organization designated by the Governor in 1985 to implement the federally mandated Protection and Advocacy (P&A) System in Illinois. The mission of Equip for Equality is to advance the human and civil rights of children and adults with disabilities in Illinois. It is the only statewide, cross-disability, comprehensive advocacy organization providing selfadvocacy assistance, legal services, and disability rights education while also engaging in public policy and legislative advocacy and conducting abuse investigations and other oversight activities. Equip for Equality provides free legal services and self-advocacy assistance to people with disabilities in the areas of discrimination, assistive technology, special education, guardianship defense, abuse and neglect, and community integration. Equip for Equality provides self-advocacy training to people with disabilities and family members on topics including the Americans with Disabilities Act, employment, transportation, voting, Ticket to Work, special education, and guardianship.

Other Offices: Equip for Equalityâ&#x20AC;&#x2122;s Moline Office (Northwestern Illinois) 1515 Fifth Ave., Suite 420, Moline, IL 61265 Phone: 309-786-6868

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

163 159

Toll-Free: 800-758-6869 Fax: 309-797-8710 TTY: 800-610-2779

regarding special education, preparing for due process, and IEPs.

Equip for Equalityâ&#x20AC;&#x2122;s Springfield Office (Central Illinois) 1 West Old State Capitol Plaza, Suite 816, Springfield, IL 62701 Phone: 217-544-0464 Toll-Free: 800-758-0464 Fax: 217-523-0720 TTY: 800-610-2779

Gallaudet University Regional Center (GURC) John A. Logan College 700 Logan College Road, Carterville, Illinois 62918 Voice Number: 618-565-0054 VP Fees: None Email Address: shericook@jalc.edu or mistiharrison@jalc.edu Website: www.jalc.edu/gurc Languages Used: English, ASL

Equip for Equalityâ&#x20AC;&#x2122;s Carbondale Office (Southern Illinois) 300 East Main St., Suite 18, Carbondale, IL 62901 Phone: 618-457-7930 Toll-Free: 800-758-0559 Fax: 618-457-7985 TTY: 800-610-2779 Family Resource Center on Disabilities 11 East Adams Suite 1002, Chicago, IL 60603 Voice Number: 312-939-3513 Fax Number: 312-854-8980 Email Address: info@frcd.org Website: www.frcd.org Languages Used: English and Spanish Description: Coalition of parents and professional organizations improving services for all children with disabilities.

Publishes training manuals and pamphlets

Table of Contents

Description: The Gallaudet University Regional Center at John A. Logan College offers extension courses, training workshops, and technical assistance to address the educational, transition, and professional development needs of deaf and hard of hearing people from birth through adulthood, their families and professionals who work with them.

Guide By Your Side (GBYS) P.O. Box 9366, Naperville, IL 605679366 Voice Number: 866-655-4588 Fax Number: 866-695-3880 Fees: None E-mail Address: ilhvgbys@gmail.com Website: www.ilhandsandvoices.org/GBYS Languages Used: English, Spanish, ASL

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

164 160

Description: GBYS, a program of Hands & Voices (see IL Hands & Voices listing), provides unbiased, emotional support and resources by trained Parent Guides to families with children who have a hearing loss. Parent Guides are able to offer unbiased information, support, and can relate and share from raising their own child who has a hearing loss. â&#x20AC;&#x153;What works for your child is what makes the choice right.â&#x20AC;?

HITEC Group 1743 Quincy Ave. Unit #143, Naperville, IL 60540 Voice Number: 800-288-8303 TTY Number: 800-536-8890 Spanish Number: 888-758-6056 Fees: Varies Email Address: Info@hitec.com Website: www.hitec.com Languages Used: English, ASL, Spanish Description: HITEC provides a variety of assistive technology including amplified telephones, TTYs, alarm clocks, smoke detectors, alerting devices and more.

Illinois Assistive Technology Program (IATP) 1020 S Spring St., Springfield IL 62704 Voice Number: 217-522-7985 TTY Number: 217-522-9966 Fax Number: 217-522-8067 Email Address: iatp@iltech.org Website: http://www.iltech.org

Table of Contents

Languages Used: English Description: We provide a device loan program, demo center, low interest loan program for people with disabilities. We also have a trainer on staff and do exhibits throughout the state of Illinois.

Illinois Association of the Deaf (IAD) 2010 Vale Street, Champaign, IL 61822 Fees: Varies Email Address: president@iadeaf.org Website: www.iadeaf.org Languages Used: English, ASL Description: IAD strives to promote advancement of the social, educational, and economic well-being of the deaf and hard of hearing citizens of Illinois. IAD advocates for equality, full communication access, and cultural preservation of the deaf and hard of hearing people in Illinois.

Illinois Chapter, American Academy of Pediatrics (ICAAP) 1400 West Hubbard, Suite 100, Chicago, IL 60642-8195 Voice Number: 312-733-1026 Fax Number: 312-733-1791 Fees: None Email Address: info@illinoisaap.com Website: www.illinoisaap.org Languages Used: English Description: The Illinois Chapter of the American Academy of Pediatrics (ICAAP)

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

165 161

is an organization of approximately 2,300 pediatricians in Illinois. Primary activities include advocacy on behalf of children, families, and health professionals in Illinois and the provision of medical education and resources to improve the health and well-being of children.

Fees: Varies Email Address: IDLA.Response@gmail.com Website: http://www.idlanews.com/ Facebook: Illinois Deaf Latino Association - IDLA Languages Used: English, Spanish, ASL

Illinois Deaf and Hard of Hearing Commission (IDHHC) 528 South 5th Street, Suite 209, Springfield, IL 62701 Voice Number: 217-557-4495 TTY Number: 888-261-2698 Videophone: 217-303-8010 Fax Number: 217-557-4492 Fees: None Email Address: dhh.webmaster@illinois.gov Website: www.idhhc.illinois.gov Languages Used: English, ASL, Pidgin Sign Language, Signed Exact English

Description: The Illinois Deaf Latino Association (IDLA) promotes leadership, education, networking and preservation of the rights and quality of life for deaf and hard of hearing Latino/a individuals in Illinois through cultural, educational, pride and social activities.

Description: The Illinois Deaf and Hard of Hearing Commission is an executive agency of the State advocating public policies, regulations, and programs to improve the quality and coordination of services for individuals with hearing loss.

In addition, we serve as a conduit of information to the general public, legislators, governmental agencies, service providers, organizations, and private entities.

Illinois Deaf Latino Association (IDLA) P.O. Box 1535, Oak Park, IL 60304

Table of Contents

Illinois Department of Public Health Early Hearing Detection and Intervention Program 535 West Jefferson Street, 2nd Floor, Springfield, Illinois 62761 Voice Number: 217-782-4733 TTY Number: 800-547-0466 Fax Number: 217-557-5324 Fees: None Website: http://www.illinoissoundbeginnings.org/ and www.idph.state.il.us Languages Used: English (sign language and Spanish interpreters available) Description: IDPH provides program management of tracking/follow-up activities assuring all infants are screened and receive appropriate follow up.

Birthing hospitals report data to IDPH weekly by encrypted transfer. IDPH

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

166 162

notifies parents/physicians of infants needing further testing. IDPH maintains a database of tracking activities, data management, report generation for program evaluation. The EHDI program is committed to the screening of every infant no later than 1 month of age, diagnostic evaluation no later than 3 months of age, intervention no later than 6 months of age and parent support.

Illinois Early Intervention Clearinghouse 51 Gerty Drive, Champaign, IL 618207469 Voice Number: 877-275-3227 Email Address: Illinois-eic@illinois.edu Website: www.eiclearinghouse.org Description: The EI Clearinghouse is a lending library and information resource for families and professionals concerned about the growth and development of young children. Our free lending library consists of books, journals, and DVDs related to early childhood, parenting, and young children with special needs. In addition to searching the online library catalog, the EI Clearinghouse website offers parent-friendly early intervention information in the form of resource guides by topic, tip sheets and a digital newsletter published quarterly.

Table of Contents

Illinois Hands & Voices (IL H&V) P.O. Box 9366, Naperville, IL 605679366 Voice Number: 877-350-4556 Fax Number: 866-695-3880 Fees: Membership available Email Address: ilhandsandvoices@gmail.com Website: www.ilhandsandvoices.org Languages Used: English, ASL Description: We are a parent driven nonprofit organization providing non-biased information and support for parents of children who are deaf or hard of hearing in the state of Illinois. We are parents of children who cue, sign, use their voice, or any combination of different methods and modalities. Our families/members come to us with children who have varying degrees of hearing loss. Our board is comprised of both hearing and nonhearing individuals. Parents hold the majority of board positions with the rest being a variety of professionals working with children who have hearing loss. We offer our Guide By Your Side Program free of charge to families in Illinois who have children who are deaf or hard of hearing (See Guide By Your Side listing).

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

167 163

Illinois School for the Deaf (ISD) 125 Webster Ave., Jacksonville, IL 62650 Voice Number: 217-479-4200 TTY Number: 217-479-4200 Fax Number: 217-479-4239 Website: www.illinoisdeaf.org Languages Used: Bilingual-English & ASL Description: Comprehensive, bilingual educational services for students aged 021 years. ISD provides academic programming, related services, including support for students with cochlear implants, and a full complement of extracurricular activities. The school meets requirements set forth by the Illinois State Board of Education and is fully accredited by AdvancEd and the Conference of Educational Administrators of School and Programs for the Deaf.

Illinois School for the Deaf Outreach 125 Webster, Jacksonville, IL 62650 Outreach Number (voice): 217-7179648 Videophone Number: 217-882-6361 Fax Number: 217-479-4328 Email Address: Joseph.Vieira@illinois.gov Website: http://www.illinoisdeaf.org/Outreach/Outr each.html Languages Used: English, ASL Description: Provides training, technical assistance, consultation, assessments, and

Table of Contents

cochlear implant supports statewide to teachers, educational interpreters, parents, and other educational personnel working with children who are deaf or hard of hearing ages Birth-21 years. Outreach staff include a Cochlear Implant Specialist, Deaf Education Specialist, and Special Education Rights Specialist.

Three parent conferences and one statewide professional conference are offered annually. All Outreach services are free.

Illinois Service Resource Center (ISRC) 3444 Dundee Road, Northbrook, IL 60062 Voice Number: 847-559-8195 VP Number: 224-545-5199 TTY Number: 847-559-9493 Fax Number: 847-559-8199 Fees: None Email Address: isrc@isrc.us Website: www.isrc.us Languages Spoken: English, ASL, Spanish Description: ISRC provides behavior support statewide in Illinois for children birth to age 22 who are deaf, hard of hearing, or visually impaired. Team members meet with families and educational teams to develop behavior intervention plans that are consistent at home and school. A FREE resource library of over 1200 books, DVDs, games, and other items is available. Items are mailed with return postage included.

Topics include behavior, parenting, sign

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

168 164

language, Autism Spectrum Disorder, sensory integration, visual strategies, social skills, and more.

Illinois Speech-Language-Hearing Association (ISHA) 35 E. Wacker Drive Suite 850 Chicago, IL 60601-2106 Voice Number: 312-644-0828 Email Address: membership@ishail.org Website: http://www.ishail.org/isha/ Description: A non-profit professional organization comprised of licensed professionals with advanced degrees in Speech-Language Pathology, Audiology or Speech-Language- Hearing Science.

ISHA serves as a resource for the public in matters related to delays, disorders, and differences in speech, language, hearing, feeding and swallowing.

Illinois Supervisors of Programs for Deaf and Hard of Hearing Individuals (ISHI) Fees: None Email Address: info@ishi-il.org Web Site: www.ishi-il.org Languages Used: English, ASL Description: Organization of supervisors of educational programs in Illinois that serve students who are Deaf or hard of hearing.

They promote quality educational programming and social experiences for their students. ISHI deals with local,

Table of Contents

statewide, and national issues which affect our students. Their members come from all over the state and represent both small and large school districts. All meetings are open to the public.

Illinois Teachers of the Deaf and Hard of Hearing (ITDHH) Fees: None Email Address: info@ithi.org Website: www.ithi.org Languages Used: English, ASL Description: The purpose of this organization is to foster professional growth of teachers of persons who are deaf and hard of hearing and to promote the quality of education for persons who are deaf and hard of hearing in the state of Illinois. Furthermore, it is the purpose of this organization to promote cooperation and unification among all state services and agencies serving persons who are deaf and hard of hearing in the State of Illinois.

Illinois Telecommunications Access Corporation (ITAC) 3001 Montvale Drive, Suite D, Springfield, IL 62704 Voice Number: 800-841-6167 Fax Number: 217-698-0942 Fees: None Website: www.itactty.org Languages Used: English, ASL

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

169 165

Description: A non-profit agency mandated by Illinois law to provide telecommunications equipment for qualified Illinois residents and the operation of telecommunications relay service.

Institute for Parents 125 Webster, Jacksonville, IL 62650 Voice Number: 217-479-4255 Video Phone Number: 217-717-9701 Fax Number: 217-479-4323 Fees: None Email: Angela.Kuhn@Illinois.gov Languages Used: English, ASL, Spanish Description: The Institute is a free weeklong educational program for parents of children (up to age 5) who have a significant hearing loss. It provides an opportunity for parents to learn about deafness and to learn about their childâ&#x20AC;&#x2122;s individual strengths and needs.

The Kline House 0-3 Parent/Infant Program 125 Webster Avenue, Jacksonville, IL 62650 Voice Number: 217-479-4232 Video Phone Number: 217-717-9701 Fax Number: 217-479-4328 Fees: None Email Address: Angela.Kuhn@Illinois.gov Languages Spoken: English, ASL

Table of Contents

Description: Provides home-based and center-based services to children who are deaf and hard of hearing ages birth â&#x20AC;&#x201C; 3 and their families statewide. The focus is on the development of language, communication skills, and listening skills following the mode of communication chosen by the family. Monthly playgroups are also provided at the Illinois School for the Deaf.

Liberty Health Supply 14044 W Petronella Dr., Suite #5, Libertyville, IL 60048 Voice Number: 800-991-6207 Fax Number: 877-991-8028 Fees: Varies Email: sales@libertyhealthsupply.com Website: www.libertyhealthsupply.com Languages Spoken: English, ASL Description: Liberty Health Supply is an online retailer specializing in protecting, enhancing, and assisting our customer's hearing and health. We are committed to finding simply the best solutions to facilitate comfortable, independent living at affordable prices. In-home visual alarm systems, vibrating alarm clocks and cochlear implant/hearing aid accessories are just a sample of the assistive products offered by Liberty Health Supply.

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

170 166

Look What I Can Do/Child Find 512 North Main Street, Harrisburg, IL 62946 Voice Number: 800-851-6197 or 618-253-5581 Fax Number: 618-252-8472 Fees: None Website: www.childfind-idea-il.us Language Spoken: English Description: Statewide distribution of free public awareness materials about Early Intervention and Child Find services.

Materials distributed educate the public about the importance of reaching children early with services essential for their optimal growth and development.

Available in English, Spanish, and some Polish.

Northwestern University, The Roxelyn & Richard Pepper Department of Communication Sciences and Disorders (CSD) 2240 Campus Dr., Frances Searle Building Evanston, IL 60208 Voice Number: 847-491-3066 Fax Number: 847-491-4975 Fees: Varies Email Address: csd@northwestern.edu Website: www.communication.northwestern.edu/de partments/csd Languages Spoken: English, Spanish

Table of Contents

Description: The Department of CSD at Northwestern University trains undergraduate, professional, and doctoral students in areas of human speech, language, hearing, and learning. The Speech-Language-Learning and Audiology clinics provide a full range of diagnostic and treatment services for hearing, speech, learning, language, voice, and swallowing disorders to patients of all ages.

Philip J. Rock Center and School (PRC) 818 DuPage Blvd., Glen Ellyn, IL 60137 Voice Number: 630-790-2474 TTY Number: 800-771-1158 Fax Number: 630-790-4893 Fees: None Email Address: PRC@aol.com Website: www.philiprockcenter.org Languages Spoken: English Description: PRC serves as a statewide resource for children who are deaf-blind, their families, and service providers. The lending library has extensive resources for teachers and parents. The center administers "Project Reach: Illinois DeafBlind Services." This project employs regional deaf-blind specialists who provide technical assistance at schools and homes.

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

171 167

Rush University Medical Center Section of Communicative Disorders 1611 West Harrison Street, Suite 530, Chicago, IL 60612 Voice Number: 312-942-5332 TTY Number: 312-942-3294 Fax Number: 312-563-2452 Fees: Varies Website: http://www.rush.edu Languages Spoken: English, Spanish, Polish, ASL Description: The Section of Communicative Disorders at Rush University Medical Center is a center of excellence for the evaluation and management of individuals with hearing, communication, and swallowing problems. We offer comprehensive clinical services for all ages (newborns through geriatric) in the areas of audiology and speech-language pathology.

Sertoma Speech and Hearing Center 10409 South Roberts Road Palos Hills, IL 60465 Voice Number: 708-599-9500 Fax Number: 708-599-2791 Fees: U&C, scaled or reduced fees available based upon need Email Address: info@sertomacenter.org Website: www.SertomaCenter.org Languages Spoken: English

pathology services. Audiologists provide hearing evaluations, screenings, otoacoustic emissions, hearing aid dispensing and repairs, educational audiological services, FM systems, industrial hearing conservation, APD screens. Speech Language Pathologists provide a complete range of speech language therapy and services. Additional centers in Homewood and Romeoville.

Sinai Deaf Health/ Mount Sinai Hospital 1500 South Fairfield Avenue, Chicago, Illinois 60608 Voice Number: 773-257-5125 Videophone: 773-321-0096 Fax Number: 773-257-2124 Fees: All insurance accepted; sliding fee available if no insurance Email Address: teri.hedding@sinai.org Website: http://www.sinai.org/node/4195 Languages Spoken: English, ASL, Spanish Description: Sinai Deaf Health offers high quality medical, mental health and support services tailored for deaf and hard of hearing patients and their families by offering doctors experienced in ASL and sign language interpreters in health care visits.

Description: Provides complete audiological and speech language

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

172 168

SIU School of Medicine Pediatric Hearing and Language Program 301 N Eighth Street, Springfield IL 62794 Voice Number: 217-545-7124 Fax Number: 217-545-7386 Fees: None Email: cmontgomery57@siumed.edu Website: www.siumed.edu/ent Languages Spoken: English, ASL, Spanish Description: SIU School of Medicine's Pediatric Hearing and Language Program includes otolaryngologists, audiologists and a listening and spoken language specialist to help care for your child's hearing needs. Our doctors of audiology specialize in diagnostic evaluation and treatment, hearing devices such as cochlear implants, hearing aids and FM and DM systems, and Auditory Brainstem Response (ABR) testing. Our listening and spoken language specialist provides instructional services to infants and children and their families. Parents and caregivers participate in instruction to help facilitate the development of listening and spoken language in the home.

Table of Contents

Statewide Independent Living Council (SILC) 510 East Monroe Street 3rd Floor, Springfield, IL 62701 Voice Number: 217-744-7777 TTY Number: 217-744-7777 Fax Number: 217-744-7744 Fees: None Email Address: Silc@silcofillinois.org Website: www.silcofillinois.org Languages Spoken: English Description: SILC is a planning body mandated by the federal Rehabilitation Act to develop and have co-sign-off authority on the 3-year Illinois State Plan for Independent Living. Goal is to advocate for the provision of independent living services for people with disabilities, their families, and their friends.

University of Chicago Pediatric Hearing Loss Program 5841 South Maryland Ave, MC 1035, Chicago, IL 60637 Voice Number: 773.702.0815 Fax Number: 773.702.6809 Fees: Varies Email: dsuskind@surgery.bsd.uchicago.edu Website: www.uchicagokidshospital.org/specialties/ ent/hearing-loss/cochlear/ Languages Spoken: English, ASL interpreters available

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

173 169

Description: The University of Chicago Pediatric Hearing Loss Program is comprised of a dedicated multidisciplinary team including surgeons, audiologists, speech pathologists, and you, the parents.

Services include universal newborn hearing screening follow-up, on-going audiological care, cochlear implant evaluations and surgery. The University of Chicago is at the forefront of ensuring medical, educational, and emotional intervention for our families.

optimal choice for themselves and their family. Our team consists of a neurotologist (an ear-specialist surgeon), three doctoral-level audiologists, a teacher of the deaf and hard of hearing, a speechlanguage pathologist, a social worker, and a psychologist; all of whom collaborate in providing quality care.

University of Illinois Hospital Chicago 1855 West Taylor Street, Chicago, IL 60612 Voice Number: 312-996-6522 TTY Number: None Fax Number: 312-996-7373 Fees: Varies Web Site: hospital.uillinois.edu/primaryand-specialtycare/otolaryngology/audiology/services/ha ppy-ears-on-taylor-street Languages Spoken: English Description: The University of Illinois Medical Center at Chicago (UIMCC) provides comprehensive medical and hearing services for people of all ages, including newborns. Our goal is to improve our patientsâ&#x20AC;&#x2122; quality of life by improving their communication abilities in a manner that is best-suited to their individual needs and wants. We advocate providing patients and their families with the information they require to make the

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

174 170

Resources for Families of Children who are Deaf and Hard of Hearing There are thousands of resources for parents of children who are deaf and hard of hearing. Itâ&#x20AC;&#x2122;s easy to feel overwhelmed by it all! We have tried to help sort through them to compile a listing of major national and statewide organizations for deaf and hard of hearing children and their families. These organizations provide information about books to read, materials to try, parents to meet, information to learn, and much more.

NATIONAL RESOURCES Alexander Graham Bell Association for Deaf and Hard of Hearing (AG Bell) Alexander Graham Bell Academy for Listening and Spoken Language 3417 Volta Place NW, Washington, D.C. 20007 Voice: 202-337-5220 Fax: 202-337-8314 Email: info@agbell.org Website: www.agbell.org A membership organization and information center focusing specifically on children with hearing loss and the auditory approach. Provides newsletters, journals, and information relating to oral education and the use of technology. Financial aid programs available for children with hearing loss.

American Academy of Audiology 11480 Commerce Park Drive Suite 220, Reston, VA 20191 800-222-2336 Toll Free Voice: 703-790-8466 Fax: 703-790-8631 Website: www.audiology.org A professional organization dedicated to providing quality hearing care to the public.

Offers professional development, education, research and increased public awareness of hearing disorders and audiological services.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

175 171

American Society for Deaf Children 800 Florida Ave. NE# 2047, Washington, DC 20002-3695 Voice/VP: 800-942-2732 Fax: 410-795-0965 Email: asdc@deafchildren.org Website: www.deafchildren.org ASDC is a nonprofit, parent organization committed to empowering diverse families with deaf* children and youth by embracing full access to language-rich environments through mentoring, advocacy, resources, and collaborative networks. Publishes “Endeavor”, a publication sent to members three times per year. *ASDC uses the term “deaf” to be inclusive of various hearing levels, including those who are seen as, or identify as Deaf, deaf, or hard of hearing.

American Speech-Language-Hearing Association (ASHA) 2200 Research Blvd., Rockville, MD 20850-3289 Helpline: 800-638-8255 Voice: 301-296-5700 TTY: 301-296-5650 Fax: 301-296-8580 Website: www.asha.org ASHA is a national professional organization for speech-language pathologists and audiologists. Provides information for professionals and consumers on topics of current interest.

Boys Town – Boys Town National Research Hospital Center for Childhood Deafness, 555 North 30th Street, Omaha, NE 68131 Voice: 402-498-6511 Website: www.babyhearing.org Boys Town is a research center on hearing loss and related disorders. Provides educational materials for hard of hearing kids and their parents in an easy to access way.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

176 172

EAR Community P.O. Box 2040, Broomfield, CO 80038 Email Address: EarCommunity@gmail.com Website: www.EarCommunity.com Ear Community is a global charitable 501(c)(3) nonprofit organization. We offer a warm and supportive community for individuals who were born with Microtia and Atresia, Hemifacial Microsomia, Treacher Collins Syndrome, and Goldenhaar Syndrome, including varying degrees of hearing loss.

Families for Hands & Voices P.O. Box 3093, Boulder, CO 80307 Voice: 303-492-6283 Toll Free: 866-422-0422 Email: Parentadvocate@handsandvoices.org Website: www.handsandvoices.org Hands & Voices is a parent-driven, non-profit organization dedicated to providing unbiased support to families and children who are deaf or hard of hearing. They provide support activities and information concerning deaf and hard of hearing issues to parents and professionals that may include outreach events, educational seminars, advocacy, lobbying efforts, parent to parent networking and a newsletter. We strive to connect families with resources and information to make informed decisions around the issues of deafness and hearing loss.

Gallaudet University â&#x20AC;&#x201C; Laurent Clerc National Deaf Education Center National Deaf Education Network and Clearing House 800 Florida Ave, NE, Washington, DC 20002-3695 Website: www3.gallaudet.edu/clerc-center.html The Laurent Clerc National Deaf Education Center at Gallaudet University provides information, training, and technical assistance for parents and professionals to meet the needs of deaf and hard of hearing children. The work of the Clerc Center is guided by the Education of the Deaf Act, which sets forth our mission: To raise the achievement of deaf and hard of hearing students ages birth-21 nationwide by supporting the families and

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

177 173

professionals who work with these students. This support is in turn guided by public input gathered from educators, professionals, and families working with deaf and hard of hearing children.

Hearing Loss Association of America (HLAA) 7910 Woodmont Avenue, Suite 1200, Bethesda, MD 20814 Voice: 301-657-2248 Fax: 301-913-9413 Website: www.hearingloss.org The Hearing Loss Association of America (HLAA) is the nation’s leading organization representing people with hearing loss. HLAA provides assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss. HLAA is working to eradicate the stigma associated with hearing loss and raise public awareness about the need for prevention, treatment, and regular hearing screenings throughout life.

Helen Keller National Center for Deaf-Blind Youth and Adults 141 Middle Neck Road, Sands Point, NY 11050 Voice: 516-944-8900 Email: hkncinfo@hknc.org Website: www.helenkeller.org/hknc HKNC is the only organization of its kind—providing training and resources exclusively to people age 16 and over who have combined vision and hearing loss. Students travel from across the country to our headquarters in Sands Point, New York, for on-campus training in assistive technology, vocational services, orientation and mobility, communication and independent living, and our regional offices bring HKNC resources to communities throughout the United States.

Our instructors are sensitive to the cultural differences between students with different levels of hearing and vision loss and varying educational backgrounds, providing individualized training and guidance to each student. HKNC also is a leader in professional learning, “training the trainers” to work with the deaf-blind community.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

178 174

John Tracy Clinic 806 West Adams Boulevard, Los Angeles, CA 90007 Voice: 213-748-5481 Fax: 213-749-1651 Email: web@jtc.org Website: www.jtc.org John Tracy Clinic (JTC) is a leading non-profit 501(c)(3) organization, with a mission of providing parent-centered services to young children with hearing loss, offering hope, guidance, and encouragement. Our goals are to help children develop the speech, language and listening skills they need to thrive in the hearing world. Further, we equip their parents with the necessary knowledge and training to help their children achieve their full communication potentials. Online education opportunities for parents are available.

National Association of the Deaf (NAD) 8630 Fenton Street Suite 820, Silver Spring, MD 20910 Voice/Videophone (VP): 301-587-1788 (ZVRS) 301-328-1443 Voice (Sorenson) 301-338-6380 Voice (Convo) TTY: 301-587-1789 Fax: 301-587-1791 Email: nad.info@nad.org Website: www.nad.org Provides consumer advocacy information and support for the Deaf. Public information center, research library and bookstore are available.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

179 175

National Center for Hearing Assessment and Management (NCHAM) Utah State University, 2615 Old Main Hill, Logan, Utah 84322 Voice: 435-797-3584 Website: www.infanthearing.org NCHAM serves as the National Resource Center for the implementation and improvement of comprehensive and effective Early Hearing Detection and Intervention (EHDI) systems. As a multidisciplinary Center, our goal is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention.

National Center on Deaf-Blindness (NCDB) 345 N. Monmouth Ave., Monmouth, OR 97361 Voice: 503-838-8754 Email: info@nationaldb.org Website: https://nationaldb.org As a national technical assistance center funded by the federal Department of Education, NCDB works to improve the quality of life for children who are deaf-blind and their families by: creating visibility and direction for identified priorities through a range of practices, activities, supports and partnerships; identifying and encouraging new innovations in local, state, and national practice and policy; promoting opportunity for reflection, debate, and constructive dialogue around ideas and developing practice; and maintaining a rich repository of content, history, and knowledge, easily available and shared by all who are part of the community of deaf-blindness.

National Cued Speech Association 1300 Pennsylvania Avenue, NW, Suite 190-713, Washington, DC 20004 Voice: 800-459-3529 Email: info@cuedspeech.org Website: www.cuedspeech.org The National Cued Speech Association supports effective communication, language development, and literacy in families with deaf, hard of hearing or learning disabled infants, children and youth through the use of Cued Speech. Cued Speech is a visual

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

180 176

mode of communication in which mouth movements of speech combine with “cues” to make the sounds (phonemes) of traditional spoken languages look different. Cueing allows users who are deaf, hard of hearing or who have language/communication disorders to access the basic, fundamental properties of spoken languages through the use of vision.

National Institute on Deafness and Other Communication Disorders National Institute on Health, 31 Center Drive, MSC 2320, Bethesda, MD 20892 Voice: (800) 241-1044 TTY: (800) 241-1055 Email: nidcdinfo@nidcd.nih.gov Website: www.nidcd.nih.gov NIDCD is mandated to conduct and support biomedical and behavioral research and research training in the normal and disordered process of hearing, balance, smell, taste, voice, speech and language. The Institute also conducts and supports research and research training related to disease prevention and health promotion; addresses special biomedical and behavioral problems associated with people who have communication impairments or disorders; and supports efforts to create devices which substitute for lost and impaired sensory and communication function.

Supporting Success for Children with Hearing Loss 1775 Garland Lane N., Plymouth, MN 55447 Voice: 888-963-8991 Email: info@successforkidswithhearingloss.com Website: www.successforkidswithhearingloss.com Supporting Success is a ‘go-to’ site for professionals and family members seeking more information about hearing loss and what can be done to better support the future learning and social success of children with hearing loss. Resources include: 1) Accessible Information & Resources, 2) Relevant Bi-Monthly Newsletters (FREE), 3) Professional Development Webcasts, 4) Products to improve student outcomes, 5) Teacher Tools Member Magazine, 6) Biennial SSCHL Conference, 7) Advocacy Information for Appropriate Services, 8) Publisher of great products to improve outcomes.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

181 177

COCHLEAR IMPLANT COMPANIES Each company offers a variety of implants, accessories, and support services. If you should choose to obtain a cochlear implant for your child, your implant team will help you determine which brand and model will be most appropriate for your child. The three main companies in the United States are: Advanced Bionics — https://advancedbionics.com Cochlear — www.cochlear.com MED-EL — www.medel.com

HEARING AID COMPANIES Hearing aid companies also offer different makes and models of hearing aids, as well as accessories. If you should choose to obtain hearing aids for your child, your audiologist will help you determine which hearing aid will be most beneficial for your child. Some common hearing aid companies include: Signia (Formerly Siemens) – www.signia-hearing.com Oticon – www.oticon.com Phonak – www.phonak.com Starkey – www.starkey.com Unitron – http://unitron.com Widex – www.widex.com

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

182 178

WEBSITES

The internet can be a great resource. It’s where you will find other parents like yourself who can help by discussing their experiences and offering advice. The following websites may be of interest to you: A-Z to Deafblindness – http://deafblind.com American Sign Language Dictionary – www.lifeprint.com Auditory-Verbal Therapy Blog – https://auditoryverbaltherapy.net/blog/ Baby Signs Program – www.babysignsprogram.com Beginnings (link to parent chat room) – http://ncbegin.org Center for Parent Information and Resources –www.parentcenterhub.org/repository/hearingloss Cued Speech Instruction – www.cuecollege.org Cued Speech Practice – www.dailycues.com Deaf Culture Online – www.deaf-culture-online.com Deaf Nation – www.deafnation.com Hearing and Amplification Glossary– www.babyhearing.org/HearingAmplification/Glossary/index.asp#ASL Hearing Health Magazine – www.hearinghealthmag.com Hear it – www.hear-it.org/glossary.dsp Hearing Loss Information – www.deafness.about.com My Baby’s Hearing – www.babyhearing.org National Center for Hearing Assessment and Management – www.infanthearing.org Parent Talk – www.babyhearing.org/Parent2Parent/parenttalk/raisechild.asp Scripps Research Institute – www.scripps.edu/discover/deafness.html Sign Language Basics for Beginners – www.verywell.com/sign-language-basics-1048473 The National Family Association for Deaf-Blind – http://nfadb.org

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families Children & Hearing Loss: A Resource Notebook for Illinois Families

183 179

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

180

All About Me

All About Me “I am 13 years old.”

“I love to hang out with my deaf and hearing friends.”

“I love learning new words.”

“I am deaf.” ~Edison Lopez

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

184

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 185 Children & Hearing Loss: A Resource Notebook for Illinois Families 181

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 186 Children & Hearing Loss: A Resource Notebook for Illinois Families 182

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 187 Children & Hearing Loss: A Resource Notebook for Illinois Families 183

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 188 Children & Hearing Loss: A Resource Notebook for Illinois Families 184

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 189 Children & Hearing Loss: A Resource Notebook for Illinois Families 185

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 190 Children & Hearing Loss: A Resource Notebook for Illinois Families 186

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 191 Children & Hearing Loss: A Resource Notebook for Illinois Families 187

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 192 Children & Hearing Loss: A Resource Notebook for Illinois Families 188

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 193 Children & Hearing Loss: A Resource Notebook for Illinois Families 189

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 194 Children & Hearing Loss: A Resource Notebook for Illinois Families 190

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 195 Children & Hearing Loss: A Resource Notebook for Illinois Families 191

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 196 Children & Hearing Loss: A Resource Notebook for Illinois Families 192

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 197 Children & Hearing Loss: A Resource Notebook for Illinois Families 193

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

194

Acknowledgements

Acknowledgements & Forms

“I am a lawyer.”

“I am the CEO of the National Association of the Deaf.”

“I am the Founder of Midwest Center on Law & the Deaf.”

“I am Deaf.” ~Howard Rosenblum

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

198

We would like to thank the following organizations for their hard work and dedication to creating this resource of information: ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢ ➢

AGBMS-AEHI (formerly known as AEHI Educational Center) Ann & Robert H. Lurie Children's Hospital Catholic Office of the Deaf Chicago Hearing Society, a Division of Anixter Center Child’s Voice School CHOICES for Parents Cochlear Americas Equip for Equality First Steps (Indiana Bureau of Child Development) Foundation for Hearing and Speech Rehabilitation Hands & Voices Hearing and Vision Connections HITEC Illinois Deaf and Hard of Hearing Commission Illinois School for the Deaf Illinois Service Resource Center Mendac Institute on Early Childhood Mt Sinai Deaf Access Program Phonak Hearing Systems University of Chicago Wisconsin Sound Beginnings

We would also like to thank the following parents for their contributions: Carrie Balian

Liz Heffernan

Lydia Hernandez

Jenny Knapp

Ajay Marwah

Donna Mattini

Sandy Mosetick

Judy Nelson

Kelly Ann O’Malley

Sue Schwartz

Karen Putz

Alison Rollins

Judy and Allan Rosenblum

Carey Schmerman

Jaclyn and Steve Urbanski

…and the EHDI Parent Workgroup

With special thanks to the many who have helped in editing this notebook and keeping it current over the years.

Thank you to César Aguilar for translating the notebook into Spanish.

CHOICES for Parents gratefully acknowledges Polk Bros. Foundation and Advanced Bionics for their support.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 199 Children & Hearing Loss: A Resource Notebook for Illinois Families 195

Feedback, Comments, Changesâ&#x20AC;Ś We appreciate any feedback, comments, or suggestions for changes in information to improve this notebook for future printings.

Please fill out the information below and mail it to CHOICES for Parents, P.O. Box 646, Highland Park, IL 60035; or fax it to 312-277-0997; or email it to info@choicesforparents.org.

Name (Optional): Organization: Address: City, State, Zip: Phone Number: Voice:

TTY:

VP:

E-mail Address: Are you a parent of a child with hearing loss:

Yes

No

Would you like to be added to the CHOICES for Parents mailing list to learn more about our programs and events?

Yes No Feedback, comments, or suggestions for changes in information:

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 200 Children & Hearing Loss: A Resource Notebook for Illinois Families 196

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 201 Children & Hearing Loss: A Resource Notebook for Illinois Families 197

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 202 Children & Hearing Loss: A Resource Notebook for Illinois Families 198

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 203 Children & Hearing Loss: A Resource Notebook for Illinois Families 199

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 204 Children & Hearing Loss: A Resource Notebook for Illinois Families 200

Glossary “I am a Nucleus implant recipient.”

“I am a college graduate with a master’s degree with honors.”

“I am a leader, a counselor, and an advocate.”

“I am deaf.” ~Kathy Allen Glossary

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families

205

Glossary Acoustic Immittance – Term used for testing the functional integrity of the middle ear mechanism, including the eardrum and ossicles. Includes tympanometry and acoustic reflex testing. These tests have become routine as they are sensitive to middle ear disorders even in persons with little or no hearing.

Acoustic reflex testing – Consists of subjecting the ear to a loud sound and determining if it causes the stapedius muscle to tighten the stapes. Acoustic reflexes are mainly useful as a clinical tool to further assess the status of the middle ear mechanism. Acoustic reflexes can also be a sign of brainstem dysfunction.

Air Conduction (AC) – The process by which sound is sent (conducted) to the inner ear through the external ear canal and middle ear. Air-conduction testing is performed by sending sounds to the ear through an earphone or loudspeaker.

American Sign Language (ASL) – A language used by people who cannot hear (see Deaf, deaf and Hard of Hearing). ASL uses hand shapes, positions, movements, facial expressions, and body movements to convey meaning. ASL uses an alphabet (finger spelling), sign representing ideas, and gestures. ASL is an independent language that has its own grammar and syntax. Some studies focus on the age of ASL acquisition. Age is a critical issue for people who acquire ASL, whether it is a first or second language. For a person to become fully competent in any language, exposure must begin as early as possible, preferably before school age. Other studies compare the skills of native signers and non-native signers to determine differences in language processing ability. Native signers of ASL consistently display more accomplished sign language ability than non-native signers, again emphasizing the importance of early exposure and acquisition. Other studies focus on different ASL processing skills.

Users of ASL have shown ability to process visual mental images differently than hearing users of English. Though English speakers possess the skills needed to process visual imagery, ASL users demonstrate faster processing ability – suggesting that sign language enhances certain processing functions of the human brain.

Americans with Disabilities Act (ADA) – Signed into law on July 26, 1990, the Americans with Disabilities Act (ADA) prohibits discrimination on the basis of disability in employment, programs and services provided by state and local governments, goods and services provided by

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 206 Children & Hearing Loss: A Resource Notebook for Illinois Families 201

private companies, and in commercial facilities. The website www.ada.gov provides valuable information about the ADA for people with disabilities, employers, local businesses, and government agencies.

Amplification – Term used to describe devices that can be used to amplify, or make louder, a child’s hearing. Examples of amplification are hearing aids and FM systems.

Assistive device – Any device other than a hearing aid which helps those with hearing loss.

Audiogram – An audiogram is a means of recording the results of a hearing test. It will include a table and a graph for each ear showing how well someone can hear sounds at various frequencies. It may also record results of other tests that indicate how well various parts of you’re a person’s ear (outer ear, middle ear and inner ear) are working.

Audiologist – A hearing specialist trained to test hearing. An audiologist also recommends and fits devices to aid hearing. Minimum academic degree is a Master’s degree. Many audiologists have a Doctor of Audiology (AuD) degree. State licensure is required to practice audiology in many states.

Audiometry – The term used to describe formal measurement of hearing. The measurement is usually performed using an “audiometer” by an “audiologist”. In audiometry, hearing is measured at frequencies varying from low pitches (250 Hz) to high pitches (8000 Hz).

Auditory Evoked Potentials (ABR, AABR, BAER, BER) – This test measures how well a baby’s hearing nerve responds to sounds. To perform the test, special sensors are placed on the baby’s forehead and behind each ear. A soft rubber earphone is placed in the baby’s ear and sends a series of soft sounds into the sleeping baby’s ear. The sensors measure the response of the baby’s hearing nerve. The responses are recorded and stored in a computer.

Auditory Neuropathy Spectrum Disorder (ANSD) – Also known as auditory dysynchrony, auditory neuropathy is a hearing disorder in which sound enters the inner ear normally but the transmission of signals from the inner ear to the brain is impaired. It can affect people of all ages, from infancy through adulthood. The number of people affected by auditory neuropathy is not known, but the condition affects a relatively small percentage of people who have a hearing loss. People with auditory neuropathy may have normal hearing, or hearing loss ranging from mild to severe; they always have poor speech-perception abilities, meaning they

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 207 Children & Hearing Loss: A Resource Notebook for Illinois Families 202

have trouble understanding speech clearly. Often, speech perception is worse than would be predicted by the degree of hearing loss. For example, a person with auditory neuropathy may be able to hear sounds, but would still have difficulty recognizing spoken words. Sounds may fade in and out for these individuals and seem out of sync.

Auditory Training – Listening to environmental sounds, music and speech to practice recognizing and understanding what has been heard.

Aural (re)habilitation – Specialized training for people with hearing loss to help them learn spoken communication skills through speech reading and auditory training.

Bilateral Hearing Loss – A hearing loss in both ears.

Bone Conduction – The process by which sound is sent (mechanical vibrations) through the bones of the skull to the inner ear. Bone conduction testing is completed using a bone oscillator (vibrator) that is placed on the mastoid bone behind the ear or on the forehead.

Bone-Anchored Hearing Aids (Baha) – Bone-anchored hearing devices/systems transmit sound to the cochlea through direct bone conduction. The system is used for people with conductive and mixed loss hearing loss. The hearing loss may be due to chronic infection in the ear, people with the absence of or a very narrow ear canal as a result of a congenital ear malformation, infection, or surgery. It may also be used for people with a profound unilateral hearing loss. The system can be used with a headband-like strap or surgically implanted.

Captioning – A text display of spoken words, presented on a television, telephone or a movie screen that allows a deaf or hard-of-hearing viewer to follow the dialogue or the action of a program simultaneously.

CHARGE Syndrome – CHARGE syndrome (formerly "CHARGE association"), is a syndrome caused by a genetic disorder and can cause hearing loss and other abnormalities.

Connexin 26 – Connexin 26 is a known genetic cause of hearing loss.

Child and Family Connections (CFC) – CFCs are the regional intake agencies for children and families to enter the Illinois Early Intervention System.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 208 Children & Hearing Loss: A Resource Notebook for Illinois Families 203

Cochlea – Also called the “inner ear.” A snail-shaped structure that contains the sensory organ of hearing and changes sound vibrations to nerve impulses. The impulses are carried to the brain along the eighth nerve, or auditory nerve.

Cochlear Implant – A cochlear implant is an electronic device, which bypasses the damaged hair cells and stimulates the hearing nerve directly. The implant provides useful hearing and improved communication abilities to the implant user.

Conductive Hearing Loss – Hearing loss caused by a problem in the outer or middle ear, resulting in the inability of sound to be conducted to the inner ear.

Congenital Hearing Loss – Hearing loss that is present from birth. It may or may not be Inherited.

Cued Speech – Cued Speech is not a language, but it supplements any spoken language with several specific hand shapes and movements around the mouth that are designed to allow for differentiation between sounds that look alike when seen on the lips. It provides visual access to the patterns of spoken language.

Cytomegalovirus (CMV) – Cytomegalovirus can cause congenital infection resulting in hearing loss and other abnormalities. CMV is one of the leading non-genetic causes of hearing loss in children in the United States.

Decibels (dB) – When testing hearing, dB is used to indicate the loudness of a sound. The larger the number, the louder the sound. A 15 dB sound is very soft, and a 100 dB sound is very loud. deaf – In this uncapitalized form, the word deaf simply means unable to hear. It says nothing about the individual, the individual’s language, or culture. Technically, Deaf people (note Deaf, with a capital), some hard of hearing people, and all late-deafened people are deaf.

Some hard of hearing people, who might be completely unable to hear may still prefer to be called “hard of hearing.” It’s a personal choice. Many Deaf people may prefer to be called Deaf instead of deaf; again, it’s a personal choice.

Deaf – A term used to describe persons who have a hearing loss greater than 90 dB HL. It also may be used to refer to those who consider themselves part of the Deaf community or

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 209 Children & Hearing Loss: A Resource Notebook for Illinois Families 204

culture and choose to communicate using American Sign Language instead of spoken communication.

Deaf Culture – You may hear “Deaf Culture” sometime during your lifetime. Deaf Culture is when the community shares a common language and pride in American Sign Language.

They share survival techniques in hearing population, norms of behavior, attitudes, humors, artistic, and experiences. They seek each other for social interaction and emotional support.

Developmental Therapist/ Hearing (DTH) – An early intervention credentialed Developmental Therapist/Hearing (DTH) is an educator with a degree in Special Education/Deaf and Hard of Hearing and receives authorizations under the service types Aural Rehabilitation and Developmental Therapy.

Diagnostic Audiologic Evaluation – A thorough hearing test conducted by an audiologist (hearing specialist). An in-depth test is usually used to determine a baby’s hearing status.

This test will confirm whether or not hearing problems exist, and if so, to what degree.

Digital – Digital sound processing means that the sound is registered mathematically. Digital sound is encoded as a series of numbers (0 and 1), which reflect its pitch and volume at a given instant. The processing is very precise and can be manipulated electronically.

Dynamic Range – The difference between the softest sounds one can hear and the loudest sound tolerated.

ENT – Ear Nose & Throat - A physician who specializes in disorders of the ear, nose or throat. Also See Otolaryngologist.

Ear Canal – The passageway from the outer ear to the eardrum.

Eardrum – Also called the tympanic membrane. The eardrum separates the outer ear from the middle ear and is important in conducting sound to the middle ear and inner ear.

Ear Infection – The presence and growth of bacteria or viruses in the ear.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 210 Children & Hearing Loss: A Resource Notebook for Illinois Families 205

Earmold – A custom-made mold, used with a behind-the-ear hearing aid, which delivers amplified sounds into the ear. Earmolds are sometimes also used for cochlear implant processors in order to keep the piece on the ear.

Earwax – An oily substance that lubricates the ear. Everyone produces earwax and the production of earwax regulates naturally. Earwax can harden in the ear canal and thereby block it. It should be removed only by an otologist. Also called cerumen.

Early Intervention (EI) – Early intervention services help young children and their families learn to communicate and adjust to living with hearing loss. Services may include assistance in developing communication with your child, parent and sibling support groups, and instruction in different methods of communication.

Evoked Otoacoustic Emissions (OAE, EOAE, TEOAE, DPOAE) – This is a test that measures how well a child’s cochlea, or inner ear works. A soft rubber ear piece is placed in the baby’s outer ear and makes a soft clicking sound. Healthy ears will “echo” the click sound back to a microphone inside the ear piece that is in the baby’s ear.

Feedback – In hearing aids, feedback is ‘whistling’ or ‘howling,’ which is created when the amplified sound from the hearing aid escapes from the ear canal through ear mold vents or slit leaks and is picked up by the microphone of the same hearing aid.

FM system – An FM system is a system which can be added to a hearing aid, when the hearing-impaired person has to listen in difficult hearing situations. It consists of a microphone, which is placed near the speaker(s), amplifier and receiver, that is also attached to the hearing aid.

Frequency – The unit of measurement related to the pitch of a sound. Frequency is expressed in Hz (Hertz) or cps (cycles per second). The more cycles per second, the higher the pitch.

Genetics – A genetic disorder is a disease that is caused by an abnormality in an individual's DNA and is present before birth. Most genetic disorders are quite rare and affect one person in every several thousands or millions.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 211 Children & Hearing Loss: A Resource Notebook for Illinois Families 206

Genetic counseling – Specially-trained professionals help people learn about genetic conditions, find out their chances of being affected by or having a child or other family member with a genetic condition, and make informed decisions about testing and treatment.

Hard of Hearing – Hard of hearing refers to someone who doesn’t hear well. This may be because they were born with a hearing loss or they may have lost some or all of their hearing later in life. Many hard of hearing people don’t know that they have a hearing loss. Some simply deny it, even though they may know that their hearing is diminished. Some people who are completely deaf may consider themselves hard of hearing. Nearly 10% of all people have some level of hearing loss. Over your lifetime, there is a much higher probability you will lose some of your hearing. While the concept of hearing loss is familiar in elderly people, people of any age: babies, children, teenagers, adults, and the elderly can be hard of hearing.

Hearing Aid – A wearable instrument intended to aid a person with impaired hearing, usually consisting of a microphone, amplifier and earphone, powered by a low voltage battery.

Hearing aids can be worn behind the ear, in the ear and sometimes on the body. Hearing aids do not restore normal hearing but can improve the wearer’s ability to hear.

Hearing Impaired – A technically accurate description of someone who is hard of hearing or who has no hearing. However, many Deaf, hard of hearing and late deafened people prefer not to be called impaired. They don’t want to be primarily defined by their lack of (or poor) hearing. While it’s true that their hearing is not perfect, that shouldn’t make them impaired as people. Most would prefer to be called Deaf, hard of hearing or deaf when the need arises to refer to their hearing status, but not as a primary way to identify them as people (where their hearing status is not significant).

Hearing Loss – Hearing loss is reduced ability to perceive sound relative to people with normal hearing. Hearing loss does not mean a child is deaf. There are varying degrees of hearing loss, ranging from mild to severe-profound (Deaf). There are also different types of hearing loss. Conductive hearing loss, which is caused by a problem of the outer or middle ear, and sensorineural hearing loss, which is a result of a malfunction of the sensory cells and the nerve fibers in the inner ear. A diagnostic audiologic evaluation is needed to confirm if a child has a hearing loss, and to determine what degree of hearing loss a child has. It is important to diagnose a hearing loss as early as possible so that early intervention services can begin before 6 months of age.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 212 Children & Hearing Loss: A Resource Notebook for Illinois Families 207

Hearing Screening – A hearing screening determines if an infant’s hearing is normal at the time of testing, or if more testing is necessary (See Also Pass; Refer). A screening test is not the same as a diagnostic evaluation, which defines an infant’s hearing more thoroughly. If there are any problems on a hearing screening, the infant’s hearing will usually be rescreened.

If necessary, after the second screening test, an infant may be referred for a diagnostic audiologic evaluation.

Hearing Threshold Level (HTL) – The faintest intensity level (in dB hearing level) that a person can hear a sound of a particular test frequency. A completely normal HTL is 0 dB. Also known as HL. Hertz (Hz) – When testing hearing, Hz is used to indicate the frequency of a sound, or the pitch. The lower the number, the lower the pitch. The higher the number, the higher the pitch.

A 250 Hz sound is a very low pitch, and an 8000 Hz sound is a very high pitch.

Individualized Education Program (IEP) – Although not directly related to hearing loss, IEPs are of interest because they are used to define the specific educational needs of individual children. For children with disabilities, the IEP is required by law. An IEP team including professionals from the school system, in cooperation with the child’s parent, writes the IEP for each child.

Individualized Family Service Plan (IFSP) - The Individualized Family Service Plan (IFSP) is both a process and a document intended to assist families and professionals in a community in their combined efforts to meet the developmental needs of a young child from birth to age three with special needs. Once a child turns 3, an Individualized Education Program (IEP) is put into place.

Individuals with Disabilities Education Act (IDEA) – IDEA is a US federal law that requires certain educational standards and accommodations for children with disabilities, including children with hearing loss.

Infection – Both bacterial and viral infections may result in hearing loss. The most common infection causing hearing loss is middle ear infection, Otitis Media. Bacterial infections of the brain such as meningitis may affect the cochlear labyrinth, resulting in severe sensorineural

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 213 Children & Hearing Loss: A Resource Notebook for Illinois Families 208

hearing loss. Viral infections such as measles and mumps may result in a sensorineural hearing loss.

Labyrinthitis – Labyrinthitis is an inflammation of the inner structure of the ear, called the labyrinth. It is caused by a bacterial or viral infection. Patients experience hearing problems, dizziness, and loss of balance.

Language – Language is communication through a system of rules that include: what words mean, how to create new words, how to combine words together and what word combinations are best for certain situations. Language can be a system of arbitrary signals, such as voice sounds, gestures, or written symbols. A person can have difficulty understanding a language system resulting in a receptive language problem or a person may understand a language but is unable to effectively use the rules to share thoughts, ideas and feelings resulting in an expressive language problem.

Large Vestibular Aqueduct (LVA) – LVA also known as enlarged vestibular aqueduct syndrome (LVAS), is caused by enlargement of the vestibular aqueduct in the inner ear. It is one of the most common inner ear deformities which results in hearing loss during childhood.

Age of diagnosis ranges from infancy to adulthood, and symptoms include fluctuating and sometimes progressive sensorineural hearing loss and disequilibrium.

Listening and Spoken Language Specialist (LSLS) – An LSLS may work directly with a child and/or their family to help develop the child’s hearing and listening potential to communicate through spoken language.

Literacy – The ability to read and write.

Nerve deafness – A lay term used to describe sensorineural hearing loss.

Oral Deaf Education - An approach that teaches a child to use his/her remaining hearing through amplification and the use of speechreading/natural gestures/visual cues to aid the child’s understanding of language. Primary goals are to develop spoken language and communication skills necessary for school success and integration into the hearing community.

Ossicles – The chain of three tiny bones in the middle ear (malleus, incus, stapes).

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 214 Children & Hearing Loss: A Resource Notebook for Illinois Families 209

Otitis Externa – An inflammation of the outer part of the ear extending to the auditory canal.

Otitis Media – An inflammation of the middle ear caused by infection.

Otolaryngologist (Also See ENT) – A medical doctor who specializes in ear nose & throat disorders. Otolaryngologists can diagnose and treat middle ear infections and medical problems that may affect your child’s hearing. Other names include otologist, neurotologist and otorhinolaryngologist.

Pass – A “Pass” result on a hearing screening means that a baby has normal hearing on the day of the test. It does not predict how a child will hear in the future. A child’s hearing should be re-tested at any time if speech-language milestones are not being met, or if there are parental concerns.

Pediatrician – A medical doctor who diagnoses and treats most childhood illnesses. He or she can answer questions about your child’s general health.

Pendred Syndrome - Pendred syndrome is a genetic disorder leading to congenital bilateral sensorineural hearing loss with occasional hypothyroidism (decreased thyroid gland function).

Pressure-Equalizing (PE) Tube – A tube that is inserted in the eardrum to equalize the pressure between the middle ear and the ear canal and to permit drainage. Also called a tympanostomy tube.

Refer – A “Refer” result means that further testing is necessary to evaluate an infant’s hearing. This could mean that a hearing problem may exist, but further testing is needed to confirm. The most common reasons for a “refer” result on a hearing screening are birthing debris in the ear canal, middle ear fluid or infection, or a permanent hearing loss (3 in 1000 births).

Residual Hearing – The amount of measurable, usable hearing.

Sedation – Medications used to induce sleep, most commonly through oral intake or intravenously (IV).

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 215 Children & Hearing Loss: A Resource Notebook for Illinois Families 210

Sensorineural Loss – A hearing loss caused by damage to the inner ear (cochlea) and/or the hearing nerve.

Speech – Refers to the act or manner in which a person produces a sound.

Speech Awareness Threshold (SAT) – The lowest hearing level in dB at which a person can detect the presence of a speech signal. Also known as the speech detection threshold (SDT).

Speech Frequencies – The frequencies within the 500 to 4000 Hz region, which are most important for hearing and understanding of speech.

Speech-Language Pathologist (SLP) – A professional who evaluates and provides treatment for speech, language, cognitive-communication, and swallowing problems of children and adults. Speech and language delays are frequently seen in children with hearing impairments.

Minimum academic degree is a Master’s degree. State licensure is required to practice speech-language pathology in many states.

Speech Recognition Threshold (SRT) – The lowest hearing level in dB at which 50 percent of two-syllable (spondee) words can be identified correctly. Also known as the ST (speech threshold or spondee threshold).

TTY – TTY is a telephone device, where dialog is achieved by typing words. The words are converted to phone signals and appear or are printed as words on a receiving TTY machine.

Once very commonly used by Deaf/deaf people, they are now slowly being replaced by other means of communication via phone, such as text messaging.

Teacher of the Deaf – a.k.a. Deaf Educator or Developmental Therapist/Hearing (DTH). A teacher with a Bachelor’s Degree in Special Education - Deaf and Hard of Hearing. Their studies focus on language acquisition and the unique learning and communication needs of students with hearing loss. A DTH has a background to offer families specialized information and supports related to hearing loss.

Telecoil – A wire coil contained within a hearing aid that picks up magnetic energy available from telephones or other assistive listening devices.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 216 Children & Hearing Loss: A Resource Notebook for Illinois Families 211

Tinnitus – Tinnitus (pronounced ti-night’-us or tin’-i-tus), is the medical term for the perception of sound when no external sound is present; it is often referred to as “ringing in the ears.” It can also take the form of hissing, roaring, whistling, chirping or clicking. The noise can be intermittent or constant, with single or multiple tones; it can be subtle or it can be described as "roaring." Tinnitus can be present in people of all ages, and is most often a permanent condition.

Tympanogram – The result of the tympanometry test is recorded in a visual output, called a tympanogram.

Tympanometry – A measure of the stiffness of the eardrum and thus evaluate middle ear function. A measure of the mobility of the eardrum that helps evaluate middle ear function.

This test can be helpful in detecting fluid in the middle ear, negative middle ear pressure, disruption of the ossicles, tympanic membrane perforation, and otosclerosis.

Unilateral Hearing Loss – A hearing loss in one ear only.

Usher Syndrome – Usher Syndrome is a genetic disorder that can result in hearing loss, balance problems, and an eye disorder called retinitis pigmentosa, or RP. There are three types of Usher Syndrome (Types 1, 2, and 3). The type of Usher syndrome is determined by the age at which hearing loss and vision loss begin. Type 1 is associated with profound hearing loss and balance problems at birth and vision problems occur in early childhood. For children with Type 1 Usher Syndrome, learning Braille prior to vision loss is essential. Type 2 is associated with moderate to severe hearing loss at birth and vision problems occur in late childhood. Type 3 is associated with normal hearing, balance, and eye function at birth and hearing loss and vision problems occur in childhood. Usher’s syndrome is a rare disease.

Vertigo – A spinning sensation, sometimes occurring with nausea and/or vomiting.

Voice Carry Over – An option of the relay service that allows a person (who can speak but not hear), to talk on the phone with someone who can hear. A VCO relay operator, acting between the two communicating parties, will type what the hearing person says so that the other person can read it on their TTY or computer. With VCO, the person who cannot hear does not have to type their message, but can speak it directly. VCO can make a relay call much more convenient for hard of hearing people, since only one side of the conversation has to be typed and that is done by the relay operator.

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 217 Children & Hearing Loss: A Resource Notebook for Illinois Families 212

Waardenburg syndrome â&#x20AC;&#x201C; Waardenburg syndrome is a rare genetic disorder most often characterized by varying degrees of hearing loss.s Glossary Resources: http://www.babyhearing.org/HearingAmplification/Glossary/index.asp http://www.newborn-hearing-screening.org/glossary.htm http://www.geocities.com/Heartland/Prairie/4727/gloss.htm http://www.hearinglossWeb.com/Misc/glossary.htm http://www.hear-it.org/glossary.dsp http://www.babyhearing.org/HearingAmplification/Glossary/index.asp#ASL http://www.disabilityresources.org/ADA.html http://deafness.about.com/cs/signlanguage/a/aslfacts.htm

Table of Contents

Children & Hearing Loss: A Resource Notebook for Illinois Families 218 Children & Hearing Loss: A Resource Notebook for Illinois Families 213

Resources, Advocacy, Information, Services, and Support CHOICES for Parents is a statewide coalition of parents and professionals ensuring that children with identified hearing loss and their families receive the necessary resources, advocacy, information, services, and support.

We are committed to providing unbiased information.

Karla Giese, Coordinator PO Box 646 Highland Park, IL 60035 312-523-6400 Voice/Text 224-588-3073 Videophone 866-733-8729 Outside the Chicago area 312-277-0997 Fax info@CHOICESforParents.org www.CHOICESforParents.org Table of Contents