Volta Voices May-June 2013 Magazine by Alexander Graham Bell Association for the Deaf and Hard of Hearing

VOICES

A l e x a n d e r G r a h a m B e l l A s s o c i at i o n f o r t h e D e a f a n d Ha r d o f H e a r i n g

May/June 2013

First Steps and Foundations for

Living with Hearing Loss Volume 20, Issue 3

l i s t e n i n g a n d s p o k e n l a n g u a g e . o r g

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May/June 2013

ISSUE 3

VOICES V

VOLU M E 2 0

Departments

Features

Voices from AG Bell 3 AG Bell by the Numbers 5 Navigate and Thrive with Hearing Loss

10 An Open Letter to Parents

Advocacy In Action 40 Joining Forces to Advance Education and Public Policy Issues

14 Una carta abierta a los padres

Tips for Parents 42 I Am a Parent First Hear Our Voices 44 LOFT-y Connections: Accepting My Deafness and Getting an Internship

By Krystyann Krywko, Ed.D.

Four years ago, I unexpectedly found myself trying to make sense of the hearing loss diagnosis we had just received. VERSIÓN EN ESPAÑOL

Por Krystyann Krywko, Ed.D.

18 Parents Who Have Been There: Strategies,

Experiences, and Reflections

By Anna Karkovska McGlew

Four parents from all corners of the United States reflect on their family’s journey with hearing loss.

Up Front on the Back Page 52 Matthew Browne

In Every Issue

By Sara Neumann, Au.D., CCC-A, FAAA, and Jace Wolfe, Ph.D., CCC-A

Explore new hearing aid technologies and what questions to ask your hearing health provider.

2 Want to Write for Volta Voices?

Directory of Services

List of Advertisers

Project ASPIRE: Cultivating Rich Early Language Environments for All Children

By Kristin Leffel, B.S., Elizabeth Suskind, B.A., and Dana Suskind, M.D.

Project ASPIRE is founded upon the belief that every child has the right to communicate and engage with the world.

6 voices Contributors 8 Soundbites

What’s New and Notable in Hearing Aids: A Friendly Guide for Parents and Hearing Aid Wearers

George W. Fellendorf: Honoring the Individual, Remembering His Legacy By Anna Karkovska McGlew

George W. Fellendorf, Ed.D., served as the executive director of AG Bell from 1962 until 1978.

Donor Honor Roll

Alex ander

Graham

Bell

A s s o c i a t i o n f o r t h e D e a f a n d Ha r d o f H e a r i n g

3417 volta pl ace, nw, was hington, dc 20 0 07 • w w w.li s tening and s pokenl anguage.org

VOICES Advocating Independence through Listening and Talking

— Adopted by the Alexander Graham Bell Association for the Deaf and Hard of Hearing Board of Directors, November 8, 1998

Ale x ander Gr aham Bell As sociation for the Deaf and Hard of Hearing

3417 Volta Place, NW, Washington, DC 20007 ListeningandSpokenLanguage.org voice 202.337.5220 tty 202.337.5221 | fax 202.337.8314

Volta Voices Staff Director of Communications and Marketing Susan Boswell, CAE Editor Anna Karkovska McGlew Advertising, Exhibit and Sponsorship Sales The Townsend Group Design and Layout EEI Communications AG Bell Board of Directors President Donald M. Goldberg, Ph.D., LSLS Cert. AVT (OH) President-Elect Meredith K. Knueve, Esq. (OH) Immediate Past President Kathleen S. Treni (NJ) Secretary-Treasurer Ted Meyer, M.D., Ph.D. (SC) Executive Director/CEO Alexander T. Graham (VA) Joni Y. Alberg, Ph.D. (NC) Corrine Altman (NV) Rachel Arfa, Esq. (IL) Evan Brunell (MA) Wendy Deters, M.S., CCC-SLP, LSLS Cert. AVEd (IL) Kevin Franck, Ph.D., MBA, CCC-A (MA) Susan Lenihan, Ph.D., CED (MO) Catharine McNally (VA) Lyn Robertson, Ph.D. (OH)

Want to Write for Volta Voices? Volta Voices? Submissions to Volta Voices Volta Voices welcomes submissions from both AG Bell members and nonmembers. The magazine is published six times annually. Its audience consists of individuals who are deaf or hard of hearing, parents of children who are deaf or hard of hearing and professionals in fields related to hearing loss (audiology, speech-language pathology, psychology, otology, social services, education). Visit the Volta Voices page at ListeningandSpokenLanguage.org for submission guidelines and to submit content. Subjects of Interest n Technology – related to hearing loss, new technology, improvements to or problems with existing technology, or how people are using existing technology, accommodations. n Education – related to public or private schools through post-secondary education, new approaches and teaching methods, legal implications and issues, etc. n Advocacy – information on legislation, hearing health, special or mainstream education, and accessibility. n Health – audiology issues relating to children or adults with hearing loss and/or their families and friends. n Action – stories about people with hearing loss who use spoken language as their primary mode of communication; deafness need not be the focal point of the article. Editorial Guidelines The periodicals department reserves the right to edit material to fit the style and tone of Volta Voices and the space available. Articles are selected on a space-available and relevancy basis; submission of materials is not a guarantee of use. Transfer of Copyright The revised copyright law, which went into effect in January 1978, provides that from the time a manuscript is written, statutory copyright is vested with the author(s). All authors whose articles have been accepted for publication in Volta Voices are requested to transfer copyright of their articles to AG Bell prior to publication. This copyright can be transferred only by written agreement.

Without copyright ownership, the Alexander Graham Bell Association for the Deaf and Hard of Hearing cannot issue or disseminate reprints, authorize copying by individuals and libraries, or authorize indexing and abstracting services to use material from the magazine. Art Submission Guidelines Volta Voices prefers digital images over original artwork. When submitting electronic files, please provide them in the following formats: TIF, EPS or JPG (no BMP or GIF images). Digital images must be at least 300 dpi (at size).

Submit Articles/Items to: Volta Voices Alexander Graham Bell Association for the Deaf and Hard of Hearing 3417 Volta Place, NW • Washington, DC 20007 Email: editor@agbell.org Submit online at ListeningandSpokenLanguage.org

VOICES Letters to the Editor Let us know how we are doing. Write a Letter to the Editor, and you could see your comment in the next issue.

Media Kit Visit ListeningandSpokenLanguage.org and select “About AG Bell” for advertising information.

VOLTA VOICES Volume 20, Issue 3, May/June (ISSN 1074-8016) is published 6 times per year in J/F, M/A, M/J, S/O, and N/D for $50 per year by Alexander Graham Bell Association for the Deaf and Hard of Hearing, 3417 Volta Pl, NW, Washington, DC, 20007. Periodicals postage is paid at Washington, DC, and other additional offices. POSTMASTER: Send address changes to Volta Voices, Subscription Department, 3417 Volta Pl., NW, Washington, DC 20007, 202/337-5220 (voice) or 202/337-5221 (TTY). Claims for undelivered issues must be made within 4 months of publication. Volta Voices is sent to all members of the association. Yearly individual membership dues are $50. Volta Voices comprises $30 of membership dues. Subscriptions for schools, libraries and institutions are $115 domestic and $135 international (postage included in both prices). Back issues, when available, are $7.50 plus shipping and handling. Copyright ©2013 by the Alexander Graham Bell Association for the Deaf and Hard of Hearing, Inc., 3417 Volta Pl., NW, Washington, DC 20007. Articles published in Volta Voices do not necessarily reflect the opinions of the Alexander Graham Bell Association for the Deaf and Hard of Hearing. Acceptance of advertising by Volta Voices does not constitute endorsement of the advertiser, their products or services, nor does Volta Voices make any claims or guarantees as to the accuracy or validity of the advertisers’ offer. PUBLICATIONS MAIL AGREEMENT NO. 40624074 Return Undeliverable Canadian Addresses to: P.O. Box 503, RPO West Beaver Creek, Richmond Hill, ON L4B 4R6

On the cover: This issue features diverse families’ journeys with early intervention. Photo credits: Staci Coddington, Bob Riter, HMP Studios, Kristin Leffel, and Alan Sy (clockwise from top left corner).

VOICES FROM AG BELL

AG Bell by the Numbers

G Bell works to expand listening and spoken language opportunities through community building, capacity building, leadership and management. We are making progress. Parents write to tell us how they gained hope through a connection to a community, and they tell us about their children’s language accomplishments from saying a few words to talking nonstop. Across the nation, more than 90 percent of parents are now choosing a listening and spoken language outcome for their children. Take a look at the past year by the numbers to see some of the many ways that AG Bell works to support families, adults and professionals.

Advocacy The AG Bell Public Affairs Council sets advocacy priorities and guides the association’s efforts as it works to advance its mission of advocating independence through listening and talking. Working in collaboration with other organizations, AG Bell has signed on to more than six letters to advance public policy issues such as improving reimbursement and access to hearing technology and rehabilitation services, increasing the effectiveness of relay services, and advocating for expanded opportunities in the workforce and in military service. The work of AG Bell and the AG Bell Academy is accomplished through the support of more than 230 volunteers. These individuals serve on the board of directors for the AG Bell and the AG Bell Academy and its standing committees as well as on many other committees and task forces for publications, financial aid, scholarships, advocacy, chapters, the Listening and Spoken Language Knowledge Center, AG Bell Awards and in many other roles. Adults who are deaf and hard of hearing are engaged as volunteers at many levels,

VOLTA VOICES • MAY/JUNE 201 3

from serving on the boards of directors of AG Bell and the AG Bell Academy, to the board of The Volta Review as well as many other committees—adults with hearing loss are shaping and guiding AG Bell. All of this would not be possible without the generosity of the 381 individual donors making a direct contribution or through their places of work and the 74 organizations listed in this issue. Your support makes it possible to carry out our mission.

Financial Aid and Scholarships AG Bell provides families and children with financial aid that is designed to assist with a wide range of needs in raising a child with hearing loss, from auditory support services and technology, to speechlanguage intervention, to enrichment programs in the arts and sciences, to school tuition and fees and academic tutoring— even gas to get to therapy appointments. In 2012, AG Bell made 357 awards for financial aid and scholarships through its programs totaling more than $316,000. There were 140 Parent-Infant Financial Aid awards totaling more than $118,000 and 93 Preschool-age Financial Aid awards totaling more than $89,000 which were used to assist parents in meeting financial costs in the first years of life. The Arts and Sciences Financial Aid Program provided 40 awards totaling $30,000 to assist parents in providing their children with a wide range of enriching activities in these areas from summer camps to afterschool programs, and the School-Age Financial Aid Program provided 84 awards totaling $78,000 to assist parents with tuition costs. At the post-secondary level, 20 distinguished students received scholarships through the AG Bell College Scholarship Program and three graduate students received the George H. Nofer Scholarship for Law and Public Policy.

AG Bell also supported seven families with a Family Scholarship to attend the AG Bell Convention which allowed them to network with other parents of children with hearing loss across the nation. While their parents soaked in new knowledge from leaders in the field of listening and spoken language, more than 87 children participated in the Children’s Program where they engaged in language-rich activities. Overall, 317 parents and children as well as adults with hearing loss attended the convention and were joined by 872 professionals.

Information and Support AG Bell provides a wealth of information and resources for professionals as well as children and adults with hearing loss and their families through its online Listening and Spoken Language Knowledge Center. There were a total of 15,351 visits to the Knowledge Center in January 2012, which increased by 80 percent to 27,973 visits a year later due to the enhanced search engine optimization capabilities of the website and a redesigned and updated weekly AG Bell e-newsletter. The Parent Advocacy Training (P.A.T.) course is a popular resource on the Knowledge Center. This program is available at no charge and is designed to assist parents in understanding their child’s educational rights and in working collaboratively with school districts to develop an individualized educational program. A total of 421 individuals have enrolled in the course, and just over 7 percent of those utilized the Spanish language version. An increasing number of families, adults and professionals have joined the AG Bell social media community, where lively discussion, dialogue and information exchange occur among the 1,521 members of the AG Bell Facebook group. The AG

VOICES FROM AG BELL Bell Pinterest boards are followed by 522 participants and the Twitter stream has 1,200 followers who read and tweet news and announcements. There are three major e-newsletters available to the AG Bell community and two publications, Volta Voices magazine and The Volta Review journal, which published a total of 27 peer-reviewed articles. Professionals sought to enhance their knowledge and prepare for the Listening and Spoken Language Specialist certification exam by purchasing a total of 1,278 books from the AG Bell bookstore.

Professional Development and Certification Professionals are a driving force in the field of listening and spoken language by providing services to children and families, by serving as mentors for other professionals, and by adding to our knowledge base through research. The AG Bell Academy has certified more than 650 professionals

worldwide and provides an online directory to help connect families and employers seeking the services of a Listening and Spoken Language Specialist. More than 670 speech-language pathologists, audiologists, and teachers of the deaf and hard of hearing have become professional members of the association and receive information resources designed expressly for them. The AG Bell Academy also approved continuing education programs for more than 125 providers and has developed premier continuing professional education, including the AG Bell Convention and the Workshop Series, which were attended by more than 1,000 professionals seeking the latest information on cutting-edge research and trends in the field.

your support and service. If you are not currently involved with the association and would like to know where there is the most need, please contact info@agbell.org. Also, don’t forget to register for the learning event of the summer—the 2013 AG Bell Listening and Spoken Language Symposium, July 18-20 in Los Angeles, Calif. I look forward to seeing you there!

Can we count on you?

Write to us: AG Bell 3417 Volta Place, NW Washington, DC 20007

As you take a moment to reflect on the many ways the association has touched the life of you or your child, please consider how you can contribute to the work of AG Bell and the AG Bell Academy through

Sincerely,

Donald M. Goldberg, Ph.D., CCC-SLP/A, FAAA, LSLS Cert. AVT President QUESTIONS? C O MMEN T S ? C O N C ERN S ?

Or email us: info@agbell.org Or online: ListeningandSpokenLanguage.org

VOLTA VOICES • M AY / JUNE 201 3

EDITOR’S NOTE

Navigate and Thrive with Hearing Loss

reetings! This issue of Volta Voices is devoted to giving families of children newly identified with hearing loss the tools, information, resources and support they need as they set on the path of seeking a listening and spoken language outcome for their loved ones. Receiving and trying to make sense of your child’s hearing loss diagnosis is a difficult time for every parent. In “An Open Letter to Parents,” Krystyann Krywko, mother of a child with hearing loss and hard of hearing herself, addresses parents of children with hearing loss and provides them with heartfelt practical advice on handling this time mentally and emotionally. Next, in “Parents Who Have Been There: Strategies, Experiences, and Reflections,” four parents of children with hearing loss reflect on their family’s journey—from hearing screening and diagnosis through choosing listening and spoken language as a communication option to navigating the school, intervention and hospital systems, and doing their absolute best to ensure their children have every opportunity to thrive and succeed in life. In our regular column, Tips for Parents, Andrea Samuel, mother of a child with hearing loss and a speechlanguage pathologist, shares her advice in “I Am a Parent First.” A very informative must-read article by Sara Neumann and Jace Wolfe from Hearts for Hearing in Oklahoma City, Okla., “What’s New and Notable in Hearing Aids: A Friendly Guide for Parents and Hearing Aid Wearers,” discusses several new hearing aid technologies and suggests questions that you may want to ask your hearing health providers when you select your next set of hearing aids.

VOLTA VOICES • MAY/JUNE 201 3

Dana Suskind, one of the general session speakers at the upcoming 2013 AG Bell Listening and Spoken Language Symposium, and her colleagues from the University of Chicago profile Project ASPIRE, or Achieving Superior Parental Involvement for Rehabilitative Excellence, an evidence-based, early intervention curriculum founded upon the belief that every child has the right to communicate and engage with the world around him or her. We then honor and remember the legacy of George W. Fellendorf, who served as the executive director of AG Bell and as the editor of the association’s peer-reviewed journal The Volta Review, from 1962 until 1978. Dr. Fellendorf, whose middle daughter was born with hearing loss, understood the importance of parental involvement for children’s success in life and mentored other parents. During his service at AG Bell, he formulated the “Hearing Alert” program, which became the basis for the Universal Newborn Hearing Screening program that is currently mandated in most states of the United States. In “LOFT-y Connections: Accepting My Deafness and Getting an Internship,”

Elisa Cimento, who is finishing up her freshman year in college, talks about attending AG Bell’s Leadership Opportunities for Teens (LOFT) program, which led to many new friendships, an internship in Washington, D.C., and ongoing personal growth. The Advocacy in Action column focuses on AG Bell’s participation at agenda-setting meetings and public awareness events in the nation’s capital and beyond. Finally, our new column, Up Front on the Back Page, profiles Matthew Browne, a LOFT counselor, who talks about advocacy, technology and exploring the world. Thank you, as always, for reading. It is our hope that the following pages will offer support and information to your family as you pursue listening and spoken language. Please send your comments, suggestions or story ideas to editor@agbell.org. Kind regards,

Anna Karkovska McGlew Editor, Volta Voices

Be Part of the Cure

HearingLossCure.Stanford.edu/volta13 5

Voices contributors Matthew Browne shares his experiences as a counselor for the AG Bell Leadership Opportunities for Teens Program (LOFT) and talks about self-advocacy, technology and his travels in “Up Front on the Back Page.” Elisa Cimento, author of this issue’s “Hear Our Voices,” offers her reflections on going to LOFT, getting an internship, and coming to terms with her deafness. Elisa is a freshman at The George Washington University and interns at the Hearing Industries Association. She is still deciding on her major, and wants to share her story, especially to help people understand why advocacy is important. Krystyann Krywko, Ed.D., author of “An Open Letter to Parents,” is a writer and education researcher who specializes in hearing loss and the impact it has on children and families. Both she and her young son were diagnosed with hearing loss one year apart. She is the author of the e-book, “What to Do When Your Child is Diagnosed with Late Onset Hearing Loss: A Parent’s Perspective,” available on Amazon. She also authors the blog, “After the Diagnosis: Helping Families with Hearing Loss.” She can be contacted through her website www.lateonsethearingloss.org. Kristin Leffel, B.S., co-author of “Project ASPIRE: Cultivating Rich Early Language Environments for All Children,” is the research coordinator for Project ASPIRE and the Thirty Million Words Project at the University of Chicago. Her primary role with the programs is curriculum and intervention development. She joined Dana Suskind’s team in 2009 to help build the programs from ideas into reality. Leffel’s relationships with the families in

the programs solidified her passion for working to address health disparities. Sara Neumann, Au.D., CCC-A, FAAA, co-author of “What’s New and Notable in Hearing Aids: A Friendly Guide for Parents and Hearing Aid Wearers,” is a clinical audiologist at Hearts for Hearing in Oklahoma City, Okla., where she works primarily with the pediatric population, but also works with adults who have cochlear implants. In addition, Neumann works as a deaf education consultant and educational audiologist for a local school district through Hearts for Hearing. She received her B.S. in deaf education from Northern Illinois University in 2003 and her Doctorate of Audiology from Illinois State University in December 2012. Neumann’s special interests include cochlear implants, personal FM systems, transition from Part C to Part B programs, and hearing conservation for young musicians, especially those in drum corps and marching band programs. Andrea Samuel, M.S., CCC-SLP, author of “I Am a Parent First,” has been a practicing speech-language pathologist for over 10 years and has worked in early intervention for more than 5 years. She is married to Matt, and is the mother of two amazing girls, Julia, 3, and Amelia, 2, who has hearing loss. The family lives in Anchorage, Alaska. Samuel has practiced in the U.S. and in Ireland and has worked with both adults and children with communication and swallowing disorders. She has a private practice, working with children and their families. Dana Suskind, M.D., co-author of “Project ASPIRE: Cultivating Rich Early Language Environments for All Children,” is the director of the Pediatric Hearing Loss and Cochlear Implant Program and a Professor of

Surgery and Pediatrics in the Section of Otolaryngology-Head and Neck Surgery at the University of Chicago Medicine. Stemming from her work as a cochlear implant surgeon, Suskind created Project ASPIRE to address the disparities in outcomes she noticed with her patients at her clinic on Chicago’s Southside. She also created the Thirty Million Words Project, a parent-directed program that aims to address language disparities and the subsequent achievement gap in all young children. She leads a diverse team of collaborators across many disciplines to ensure all children reach their potentials. Elizabeth Suskind, B.A., co-author of “Project ASPIRE: Cultivating Rich Early Language Environments for All Children,” is the co-director of this program. She joined the team in 2011 after almost 20 years in television. In her current role, she has focused on curriculum development and formative testing. She has traveled around the country, visiting various pediatric hearing loss programs and schools that focus on listening and spoken language to videotape families willing to share their stories for Project ASPIRE. Jace Wolfe, Ph.D., CCC-A, co-author of “What’s New and Notable in Hearing Aids: A Friendly Guide for Parents and Hearing Aid Wearers,” is the director of audiology at the Hearts for Hearing Foundation in Oklahoma City, Okla. He also is an adjunct assistant professor in the Audiology Department at the University of Oklahoma Health Sciences Center and Salus University. Wolfe is a member of the Better Hearing Institute’s Pediatric Advisory Board as well as the Audiology Advisory Boards for Cochlear Americas, Advanced Bionics, and Phonak. He also serves on the editorial board of The Hearing Journal, and is a reviewer for several peer-reviewed journals. His areas of interests are pediatric amplification and cochlear implantation, personal FM systems, and signal processing for children. VOLTA VOICES • M AY / JUNE 201 3

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SOUND NEWS BITES

Apple iPhone Patent Request, App Detects Hearing Aids A patent application (No. 20130034234) filed by Apple, Inc. in 2011 and published by the U.S. Patent and Trademark Office in February 2013 reveals the process by which

an iPhone can automatically switch between standard and hearing aid compatible (HAC) modes. The Apple patent application describes how the handset can make this switch automatically, using both a proximity sensor to indicate when the phone is held close

to a user’s ear and a magnetic field sensor to determine if the user has a hearing aid in T-coil mode, causing it to switch to T-coil playback mode. When the sensor no longer detects a hearing aid, the phone’s speaker reverts back to its regular playback mode.

MEMBERS IN THE MEDIA Teen Wrestler Places Seventh in New Jersey High School State Wrestling Championship Robbie Maggiulli, a 16-year-old junior from Emerson/Park Ridge, New Jersey, was recently featured in NJ.com and NorthJersey.com, which profiled his journey with wrestling and highlighted the accommodations he uses to participate in the sport. Maggiulli, who is deaf, was born with a mixed conductive/ sensorineural hearing loss. With a natural inclination for sports—he has also played soccer, football and baseball—Maggiulli concentrated on wrestling in recent years and his efforts have paid off. He placed seventh in the New Jersey High School State Wrestling Championship, which determined the top eight high school wrestlers for New Jersey and was Maggiulli’s first time qualifying as a junior. The teen, who is a member of the National Honor Society and excels academically, feels that wrestling has given him a sense of belonging and accomplishment.

Press of Atlantic City/Danny Drake

Teen with Hearing Loss Advocates Successfully for Captioning in Theatres Until recently, John Butchko, a 13-year-old with hearing loss from Santa Monica, Calif., had to travel 15 miles to a theatre in North Hollywood to watch movies. Now, thanks to his successful advocacy efforts, he can watch captioned movies at his local AMC theatre as can 71 of his peers with hearing loss as well as adults with hearing loss or people for whom English is not the first language. Butchko partnered with Nanci LinkeEllis, a commissioner on the Santa Monica Disability Council, longtime advocate for captioning in theatres and former AG Bell board member, to advocate for captions with public boards and commissions. Four screens at his local movie theatre are now enabled with CaptiView, a device slightly larger than a cell phone, which fits into the cup holder of the seat. The captions are transmitted wirelessly so that the viewer can watch the movie and glance down and see the captions that go with the scene. Butchko was featured in the Santa Monica Daily Press and his efforts have inspired additional initiatives in his and other communities. Visit http://www.smdp. com/amc-puts-closed-captions-infour-screens/117434.

Robbie Maggiulli (in white and red) from Emerson/Park Ridge wrestles Nigel Toussaint from Egg Harbor at Boardwalk Hall Atlantic City for 7th place at the New Jersey State High School Wrestling Championship. Maggiulli wins 3-0.

VOLTA VOICES • M AY / JUNE 201 3

BITES CHAPTERS Michigan Chapter: Walk4Hearing, SummerFest, and New Website The Michigan chapter of AG Bell is looking forward to participating in the Hearing Loss Association of America (HLAA) Walk4Hearing on Saturday, May 18, 2013, at the West Boat Launch Pavilion in Milford, Mich. The HLAA Walk4Hearing is the largest walk of its kind taking place in multiple cities across the country. Every spring and fall thousands of walkers form teams and walk in their communities to increase public awareness about hearing loss and raise funds for programs and services. The chapter is also planning “SummerFest—Hear the Roar!” at the Detroit Zoo on June 23, 2013, which will be a picnic providing lunch and activities for children and families. Finally, the Michigan chapter has a newly redesigned website, thanks to the volunteer efforts of Steve Van De Steene, husband of chapter board member Heather Van De Steene. The user friendly site has many new features and items. Be sure to check out the resource section! Visit www.miagbell.org. Get Involved in the Minnesota Chapter The Minnesota chapter of AG Bell is currently in a year of rebuilding and planning. Its goal is to create a community where families and professionals can discuss concerns, needs, directions and dreams for listening and spoken language development in children and young adults with hearing loss. The chapter will work towards increasing resources and advocacy for families who are pursing listening and spoken language. The chapter invites you to join its efforts and help build a strong organization dedicated to supporting all families of children with hearing loss throughout the state of Minnesota. Please contact Erika King at erikareneeking@gmail.com with questions or comments about getting involved in the Minnesota state chapter. Nevada Chapter N*Courage*Mint Programs The Nevada chapter of AG Bell is pleased to announce the N*Courage*Mint Programs, which have been formed out of a mentorship with the John Tracy Clinic, creating a safe and healthy environment for parents to understand the facts and feelings surrounding parenting a child with hearing loss. Corrine Altman, co-president of the chapter, AG Bell board member and N*Courage*Mint director states: “This kind of support is needed because more than 90% of children born with hearing loss are born to parents with typical hearing and hearing loss is a new experience. Educating and supporting these parents helps them become true advocates for their children no matter what language philosophy they choose.” The program, for families of children who are deaf and hard of hearing from birth to 5 years old, offers presentations by local hearing loss professionals and teachers. Some of the topics include audiograms, receptive language, expressive language, and speech development. A Baby-N-Me class for families with children, birth to 18 months, focuses on interaction with their child during those early stages of development. For more information, visit the Nevada chapter at www.agbellnv.com.

VOLTA VOICES • MAY/JUNE 201 3

Compiled by: Anna Karkovska McGlew

In Memoriam: Karen Rothwell-Vivian Karen RothwellVivian, M.S.Ed., M.A., CCC-A, LSLS Cert. AVT, of Tustin, Calif., passed away on February 26, 2013. She was 58 years old. She served many children and families as well as adults as a Listening and Spoken Language Specialist, Certified Auditory-Verbal Therapist (LSLS Cert. AVT) for more than 35 years in southern California where she was the director of Auditory Verbal Services in Tustin. She was a longtime member and supporter of AG Bell and authored articles for Volta Voices. RothwellVivian was a champion for professional certification—she spearheaded the original certification of auditoryverbal therapists and was later involved in the formulation of the Listening and Spoken Language Specialist certification process. She is remembered fondly by many families for her perseverance and passion in teaching listening and spoken language to children with hearing loss, many of whom view her as a role model for life. A website has been established in memoriam at www.caringbridge.org/visit/ karenrothwellvivian.

An Op Letter en to Par By Krystyann Krywko, Ed.D.

our years ago, I unexpectedly found myself in the same situation you are now in—trying to make sense of the hearing loss diagnosis we had just received from a pediatric audiologist. I know as you sit and read this letter you find yourself in a place that you never imagined to be. At the time of my son’s diagnosis, both my husband and I had typical hearing (I have since been diagnosed with hearing loss and now wear hearing aids) and neither of us had any knowledge of hearing loss or contact with families who had children with hearing loss. The first few months after our son’s diagnosis were an emotional time. Not

only did we need to deal with this diagnosis of hearing loss emotionally, but we also had to make decisions about what the next steps would be with regards to having our son fitted for hearing aids, and moving ahead with speech therapy and what education approach to choose. A sense of urgency was added to these decisions as our son was three years old when we received his diagnosis, which meant he had already missed so much exposure to sound. As overwhelming as things seem right now, your child’s hearing loss will eventually fit in alongside everything else that you deal with as a parent. Adapting to your child’s hearing loss is all about put-

ents

ting one foot in front of the other. There will be some bumps along the way as you adapt to new situations and new people, but with each new challenge you will only gain strength and knowledge. As I reflect upon the past four years and where our hearing loss journey has taken us, I would like to share some guiding principles that have helped us along the way. DO try to stay positive, because while it may not seem so at the moment, the identification of your child’s hearing loss is a positive step. As hard as it may be, tell your child how lucky he is to wear hearing aids or a cochlear implant so that his ears will get the help they need. Starting

VOLTA VOICES • M AY / JUNE 201 3

The first few months after our son’s diagnosis were an emotional time. Not only did we need to deal with this diagnosis of hearing loss emotionally, but we also had to make decisions about what the next steps would be…

out with a positive attitude is one of the best things you can do. Your child looks towards you for feedback and cues as to how he should respond to this change in his life. Hearing aids or cochlear implants should be viewed as what they are: instruments to amplify sound so that he can hear better and participate more fully in family and school life. If he sees you become tense or embarrassed about his hearing devices in public, he might begin to think you are embarrassed by him. DON’T change your parenting style. Try to keep things as normal as possible. Many parents question how a diagnosis of hearing loss will change their parenting. The answer is that a hearing loss will

VOLTA VOICES • MAY/JUNE 201 3

change your parenting somewhat, but not as much as you think it will. Most of the changes will be centered on the additional responsibilities of having a child with hearing loss: maintaining hearing equipment, advocating for your child’s needs, attending IEP meetings, and scheduling speech therapy sessions. What won’t change is the support your child will need during this time of transition. She needs to know that your relationship and her place in the family will remain the same. Give her extra hugs when you know she needs them, but don’t fall into the trap of over-compensating for her hearing loss by treating her differently. She should have just as many responsibilities and expectations, both at home and at school, as your other children. DO take the time to play and talk a lot to your child. This point might be obvious, but life can become hectic when you are running around from specialist to specialist. Engage your child in conversations. Use big words and small words. Take the time to explore new words and ideas together. Sing songs. Read a lot of books. Extend his thinking. Go on nature walks. Give him lots of opportunities to explore with all five senses. Don’t worry about him “getting” everything; at this point it’s all about exploration. The richer the language he is exposed to, the greater connections he will make about the world around him. DON’T Google obsessively. While it is important to gather additional information about your child’s diagnosis, be careful not to go overboard. As you begin to read more about hearing loss, whether it is a new research finding or advice on a parent’s blog, it is important to recognize that your child’s hearing loss is unique. There are numerous variables that affect your child and how she will respond to various interventions, such as: the age she was when hearing loss was diagnosed; the degree of her hearing loss and

the quality of residual hearing she has unaided; and her personality, whether she is engaged, curious, active or more shy and withdrawn. Ask your audiologist for some reliable websites to start with. The AG Bell Listening and Spoken Language Knowledge Center (ListeningandSpokenLanguage.org) is a great place for families to start their information search. Knowing that you are not alone can be helpful. Search for “Blogs from the Community” on the Knowledge Center to read stories of other parents and families. DO connect with other parents whose children have hearing loss. Discovering your child has a hearing loss can be an isolating experience. You may not have had the time to connect with other families of children with hearing loss, while at the same time you may feel disconnected from your friends who have children with typical hearing. Many hospitals often offer support programs that can help you connect with other families. Also, your audiologist might be able to offer suggestions on how to meet families in your area. If you live in an isolated area, you can always join groups on Twitter, Facebook, and LinkedIn that offer virtual networks of families who are dealing with hearing loss. The AG Bell private Facebook group offers a safe and supportive place to connect, share and learn from families on a similar journey. Every day, there are lively discussions and uplifting stories. Further, AG Bell currently has chapters in 30 states, made up of volunteers passionate about listening and spoken language. Look for the State Chapter listings under the Connect tab at ListeningandSpokenLanguage.org. DON’T exclude siblings from the process. Depending on the ages of your other children it can be difficult for siblings to adjust to having a brother or sister with a hearing loss. It is important to remember

Have faith in your child. Children are hardwired to grow and develop, and that is what your child will continue to do if you give them the time, space, and support they need. to include your other child (or children) and provide them with information that is age appropriate. As you will most likely be spending a great deal of time in the beginning heading out to appointments, it may be a nice idea to try to spend some one-on-one time with your other child. It is easy for siblings to get frustrated when they see their brother or sister receiving a great deal of attention and they don’t understand why. DO teach your child to self-advocate. This can start as soon as your child receives their hearing aids/cochlear implants. Let him know it is important to tell a grown-up if something is wrong with his hearing equipment. Practice at home by taking a battery out of his

hearing equipment before you have him put it on. Give him a couple of minutes to see if he notices anything different. If he doesn’t say anything, say, “Surprise! I took your battery out. Do you notice anything different about your right ear?” Let him know that it is okay to ask someone to repeat what they are saying if he didn’t hear them the first time. There will be times when the speaker is either talking too quietly or background noises are too overwhelming. Provide him with language he can use, such as saying, “Excuse me, can you please tell me that again,” so that he can begin to feel comfortable. This will let people know that your child is not ignoring them, but just didn’t hear them.

DON’T let what others think influence your decisions. Many parents struggle with pretending their child is not different, and they don’t access the therapies and devices their child needs. When it comes to successfully developing listening and spoken language, time is of the essence. The earlier you have your child fitted with hearing aids, set up with speech therapy, or evaluated for a cochlear implant, the better chance your child has to thrive and reach his full potential. As you begin your journey remember to take your child’s hearing loss one day at a time. You will have good days and bad days; it’s a growing process for everyone. Take time to educate others about hearing loss. There are many misconceptions out there; work to overcome some of them. Remember to breathe and to find time to relax both together as a family and by yourself. Have faith in your child. Children are hardwired to grow and develop, and that is what your child will continue to do if you give them the time, space, and support they need.

VOLTA VOICES • M AY / JUNE 201 3

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Una c abi erta a arta los padr es Por Krystyann Krywko, Ed.D.

ace cuatro años, me encontré inesperadamente en la misma situación en la que está ahora tratando de dar sentido al diagnóstico de pérdida auditiva que nos acababa de dar un audiólogo pediátrico. Sé que cuando se siente y lea esta carta se encontrará en un lugar en el que nunca imaginó que iba a estar. En el momento del diagnóstico de mi hijo, tanto mi marido como yo siempre tuvimos una audición normal (desde que recibí el diagnóstico de pérdida auditiva utilizo audífonos) y ninguno de los dos tenía ningún tipo de conocimiento acerca de la pérdida auditiva ni ningún tipo de contacto con familiares que tuviesen niños con pérdida auditiva.

Los primeros meses después del diagnóstico de nuestro hijo fueron emotivos. No solo teníamos que afrontar emocionalmente el diagnóstico de la pérdida auditiva si no que tuvimos que tomar decisiones acerca de qué pasos dar con respecto a hacer audífonos a medida para nuestro hijo, avanzar en la logoterapia y qué método de educación elegir. A estas decisiones se añadió una sensación de urgencia ya que nuestro hijo tenía tres años cuando recibimos el diagnóstico, lo que significaba que ya había perdido mucha exposición al sonido. Es muy abrumador, pero parece que ahora las cosas están bien, la pérdida auditiva de su hijo se adaptará finalmente

junto a todo lo que afrontó como padre. Adaptarse a la pérdida auditiva de su hijo es precisamente ir paso a paso. En el camino habrá algunos baches ya que se tiene que adaptar a nuevas situaciones y a nuevas personas, pero con cada nuevo desafío ganará fortaleza y conocimiento. Si reflexiono sobre los últimos cuatro años y a donde nos ha llevado este viaje que ha provocado el diagnóstico de la pérdida auditiva, me gustaría compartir algunos principios que nos han ayudado a lo largo del camino. INTENTE mantener una actitud positiva, ya que aunque no lo parezca en este momento, la identificación de la pérdida auditiva de su hijo es un paso

VOLTA VOICES • M AY / JUNE 201 3

Los primeros meses después del diagnóstico de nuestro hijo fueron emotivos.

positivo. Aunque sea difícil, dígale a su hijo lo afortunado que es por llevar audífonos o un implante coclear ya que le proporcionarán la ayuda necesaria para poder oír. Empezar con una actitud positiva es una de las mejores cosas que puede hacer. Su hijo buscará su opinión y las indicaciones sobre cómo debe responder a este cambio en su vida. Los audífonos y los implantes cocleares se deben ver como lo que son: instrumentos para amplificar el sonido de modo que pueda oír mejor y participar más en la vida escolar y familiar. Si ve que se pone tenso o que se avergüenza por utilizar aparatos auditivos en público, puede que piense que está avergonzado por su culpa.

VOLTA VOICES • MAY/JUNE 201 3

NO cambie su estilo de crianza. Intente mantener las cosas lo más normal posible. Muchos padres se preguntan cómo va a cambiar un diagnóstico de pérdida auditiva a su crianza. La respuesta es que la pérdida auditiva va a cambiar la crianza de algún modo, pero no tanto como piensa. La mayoría de los cambios se centrarán en las responsabilidades adicionales de tener un hijo con pérdida auditiva: mantener el equipo auditivo, abogar por las necesidades de su hijo, asistir a las reuniones del IEP y programar sesiones de logopedia. Lo que no cambiará es el apoyo que va a necesitar su hijo durante este período de transición. Necesita saber que su relación y su lugar en la familia van a seguir siendo los mismos. Dele más abrazos cuando sepa que los necesita, pero no caiga en la trampa de compensarlo excesivamente por la pérdida auditiva tratándolo de un modo diferente. Debe tener las mismas responsabilidades y expectativas, tanto en casa como en el colegio, que el resto de sus hijos. DEDIQUE tiempo a jugar y a hablar mucho con su hijo. Este punto parece ser obvio, pero la vida se puede volver frenética cuando tiene que dar vueltas de un especialista a otro. Haga que su hijo participe en conversaciones. Utilice palabras largas y palabras cortas. Tómese el tiempo necesario para explorar juntos nuevas palabras e ideas. Canten canciones. Lean muchos libros. Enriquezca su pensamiento. Paseen por la naturaleza. Proporciónele muchas oportunidades de explorar con los cinco sentidos. No se preocupe si “coge” todo, en ese momento se trata de explorar. Cuanto más rico sea el lenguaje al que esté expuesto, realizará más conexiones con el mundo que lo rodea. NO se ponga a buscar en Google de un modo obsesivo. Aunque es importante reunir información adicional acerca del diagnóstico de su hijo, tenga cuidado con que no se le vaya de las manos. Cuando empiece a leer más acerca de la pérdida auditiva, si es una nueva investigación o un consejo en un blog de un padre, es importante que reconozca que la pérdida auditiva de su hijo es única. Existen numerosas variables que afectan a su hijo

y en cómo va a responder a las diferentes intervenciones, como: la edad que tenía cuando se le diagnosticó la pérdida auditiva, el grado de la pérdida auditiva y la calidad de la audición residual que tiene sin ayuda y su personalidad, si es participativo, curioso, activo o, por lo contrario, tímido e introvertido. Pídale a su audiólogo que le recomiende algunas páginas web fiables para empezar a informarse. El AG Bell Listening and Spoken Language Knowledge Center (ListeningandSpokenLanguage.org) es un buen lugar para que las familias comiencen la búsqueda de información. Saber que no está solo puede ser útil. Busque “Blogs from the Community” en el Knowledge Center para leer historias de otros padres y de otras familias. PÓNGASE en contacto con otros padres que tengan hijos con pérdida auditiva. Descubrir que su hijo tiene una pérdida auditiva puede ser una experiencia aislante. Puede que no haya tenido tiempo de ponerse en contacto con otras familias que tienen hijos con pérdida auditiva y, a su vez, puede que se sienta separado de sus amigos que tienen hijos con una audición normal. Muchos hospitales a menudo ofrecen programas de apoyo que pueden ayudarlo a ponerse en contacto con otras familias. Además, su audiólogo puede sugerirle un modo de conocer a otras familias de su zona. Si vive en una zona aislada, siempre puede unirse a grupos en Twitter, Facebook y LinkedIn ya que ofrecen redes virtuales de familias que se enfrentan a la pérdida auditiva. El grupo privado de Facebook de AG Bell proporciona un lugar de apoyo y seguro para conectarse, compartir y aprender de familias que están realizando un viaje similar. Todos los días hay debates animados e historias motivantes. Además, AG Bell actualmente tiene secciones en 30 estados formadas por voluntarios apasionados por la audición y el lenguaje oral. Busque en los listados de Secciones en el Estado en la pestaña Ponerse en contacto de la página web ListeningandSpokenLanguage.org. NO excluya a los hermanos del proceso. Dependiendo de las edades de sus otros

Confíe en su hijo. Los niños están programados para crecer y desarrollarse y esta es la razón por la que su hijo continuará haciéndolo si le da el tiempo, el espacio y el apoyo necesarios. hijos, puede ser difícil para los hermanos adaptarse a tener un hermano o una hermana con una pérdida auditiva. Es importante recordar incluir a sus otros hijos y proporcionarles información que sea adecuada para su edad. Ya que lo más probable es que vaya a pasar mucho tiempo al principio yendo a citas, puede ser una buena idea dedicar un tiempo individualizado a cada uno de sus hijos. Es fácil que los hermanos se sientan frustrados cuando vean que su hermano o hermana recibe más atención y no sepan cuál es la razón. ENSEÑE a sus hijos a que se defiendan ellos mismos. Puede comenzar con esto tan pronto como su hijo reciba los audífonos/implantes cocleares. Hágale saber que es importante que si el equipo de audición no funciona bien se lo digan

a un adulto. Practique en casa sacando la batería del equipo de audición antes de ponérselo. Dele un par de minutos para ver si nota algo diferente. Si no dice nada, diga: “¡Sorpresa! Te saqué la batería. ¿No notas nada diferente en tu oído derecho?” Hágale saber que si no escuchó a la primera, puede pedirle a alguien que vuelva a repetir lo que estaba diciendo. Puede ocurrir cuando el interlocutor hable muy bajo o cuando haya muchos ruidos de fondo. Dígale lo que tiene que decir, por ejemplo, “Disculpe, ¿me lo puede volver a repetir?”, de modo que pueda empezar a sentirse cómodo. Esto hará que las personas sepan que su hijo no los está ignorando, si no que no los ha oído. NO deje que las opiniones de los demás influyan en sus decisiones. Muchos padres

se esfuerzan en fingir que sus hijos no son diferentes y no los llevan a terapias ni les proporcionan los dispositivos que necesitan. Cuando se trata de desarrollar con éxito la escucha y el lenguaje oral, el tiempo es oro. Cuanto antes adapte a su hijo a los audífonos, lo lleve a una logoterapia o le realicen un implante coclear, tendrá más probabilidades de que su hijo prospere y alcance su máximo potencial. Cuando comience su viaje recuerde tratar la pérdida auditiva de su hijo un día a la vez. Tendrá días buenos y días malos, es un proceso en crecimiento para todos. Tómese su tiempo para educar a los demás acerca de la pérdida auditiva. Existen muchos conceptos equivocados, trabaje para superar algunos de ellos. Recuerde respirar y encontrar tiempo para relajarse junto a su familia o usted solo. Confíe en su hijo. Los niños están programados para crecer y desarrollarse y esta es la razón por la que su hijo continuará haciéndolo si le da el tiempo, el espacio y el apoyo necesarios.

Clarke Transforms Lives. Clarke impacts the lives of children and adults through educational and early childhood programs, hearing services, mainstream services, research, curriculum development and the teachers and professionals trained by Clarke who take their special skills to all parts of the world. To learn more, email info@clarkeschools.org or visit clarkeschools.org.

“ What Clarke has done for us is just immeasurable. The teachers and therapists have answered the difficult questions honestly and offered options and solutions to help our family. We know our daughter will leave Clarke and head to kindergarten with confidence in herself and her abilities.” —Parent, Philadelphia campus

Boston • Jacksonville • New York • Northampton • Philadelphia

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Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed.

16 Clarke Volta Voice

VOLTA VOICES • M AY / JUNE 201 3

AG Bell

Listening and Spoken Language Symposium Delivering Quality Services to Families

Hearing and Hearing TecHnology

audiTory FuncTioning

Spoken language communicaTion

cHild developmenT

parenT guidance, educaTion, and SupporT

HIGHLIGHTS: HigHligHts: • General sessions to inspire and enlighten your work with families • Seven pre-symposium workshops offering in-depth knowledge on current trends • Learn about products, programs, and technologies to support families and children • Workshop sessions that will provide evidence-based strategies for intervention • Explore Los Angeles, a city known for its culture, art, and numerous attractions!

SympoSIum attendees symposium aTTendeeS will: wILL: • Learn from the leaders in the field • Enrich your skills with practical strategies that can be implemented immediately

STraTegieS For liSTening and Spoken language developmenT

HiSTory, pHiloSopHy, & proFeSSional iSSueS

• Get new ideas for effectively serving diverse children and families • Network and exchange ideas with peers during interactive sessions • Earn up to 18 hours of continuing education from the AG Bell Academy, AAA and ASHA

educaTion

Visit ListeningandSpokenLanguage.org today to register

2013 JULY 18-20, 2013

Omni Los Angeles Hotel at California Plaza

emergenT liTeracy

Parents Who Have Been There: Strategies, Experiences, and Reflections By Anna Karkovska McGlew

s a parent, looking back at the time you received your child’s diagnosis of hearing loss, you might recall feeling confused and overwhelmed. These first days of trying to make sense of your child’s hearing loss were probably emotionally difficult and searching. You likely needed and wanted time out in order to process this new information, yet the realization that time is of the essence and that your decisions will impact the course of your child’s life, propelled you to act and kept you going. Looking back, you wish you knew then that it was all going to work out just fine. Volta Voices recently sat down with a group of parents of children with hear-

ing loss for a roundtable discussion. Four parents from all corners of the United States reflected on their family’s journey with hearing loss—from hearing screening and diagnosis through choosing listening and spoken language as a communication option to navigating the school, intervention and hospital systems, and doing their absolute best to ensure their children have every opportunity to thrive and succeed in life. The participants shared their experiences and provided their tips and strategies in the hopes that their stories will be useful to parents of newly identified children with hearing loss and give them comfort and reassurance. The roundtable included parents of very young children as well as par-

ents whose children are already in college. Most of the younger children have bilateral cochlear implants and the older children received their bilateral cochlear implants in their early teens.

Choosing a Communication Option For some families whose children were identified later, the choice to communicate through listening and spoken language was a natural outgrowth of their children’s communication development. For other parents, it was a choice made after researching all options. Mellert: She joked that her sons were diagnosed “back in the dark ages” in the mid1990s. The older son, Thom, the “trailblazer”

VOLTA VOICES • M AY / JUNE 201 3

for all things hearing loss in their small community in New Hampshire, was doing so well using listening and spoken language that he had to be re-tested to confirm the degree of his hearing loss. After he was fitted with hearing aids and did quite well, they tested Sam, his younger brother by two years, who was also diagnosed with profound hearing loss. At the time, the two brothers were the only kids with hearing loss in their community in west central New Hampshire and were already communicating using listening and spoken language prior to their hearing loss diagnosis. Mellert recalls, “It followed kind of naturally that they would listen and speak.” Coddington: Reagan Grace did not have an auditory brainstem response (ABR)

VOLTA VOICES • MAY/JUNE 201 3

Michelle Sy, from California, mother of Lucas, 4, who has profound hearing loss in both ears and wears bilateral cochlear implants. Lucas is also identified with autism spectrum disorder. He attends the Center for Early Intervention on Deafness in Berkeley in the mornings and follows a PRT/ABA (Pivotal Response Treatment/Applied Behavioral Analysis) plan in the afternoons, working on safety, social, transition and other goals. Sy is a stay-at-home mom and recently graduated from the University of Phoenix. Her husband, Noah Punsalan, is vice president in business banking.

Lisa Clayton, from Alabama, mother of Ella Marie, 3, and twin daughters, Isabella and Sophia, 19 months old. All three are profoundly deaf and wear bilateral cochlear implants. The children have been confirmed with the Connexin 26 gene through genetic testing, which can cause hearing loss. Ella Marie attends regular preschool and receives weekly auditory-verbal therapy sessions. She enjoys gymnastics. Isabella and Sophia receive individualized auditory-verbal therapy one time a week. When Clayton and her husband, Ryan, are at work, the twins go to a home daycare in order to continue developing language with peers. Clayton is an assistant professor in the Department of Elementary Education at the University of North Alabama. Her husband is an Enterprise Account Executive.

Staci Coddington, from Texas, mother of Reagan Grace, 7, who has sensorineural hearing loss—profound in her right ear and moderate in her left. Reagan Grace wears a cochlear implant in her right ear. She has a brother, 9-year old K.J., who has typical hearing. Both kids attend Founders Classical Academy, a charter school in Texas with classical curriculum. Reagan is in the first grade and is one of the top performers in her class. K.J. plays football, baseball, and basketball and Reagan swims and plays soccer and basketball. Coddington is a stay-at-home mom, chauffer, nurse, therapist, church and school volunteer. She is married to Kyle, who is in product development and marketing for a medical device company.

Staci Coddington

Alan Sy

Barbara Mellert, from New Hampshire, mother of Thom, 20, and Sam, 18, both with profound hearing loss and with bilateral cochlear implants. Both sons have attended mainstream schools and were often the only kids with hearing loss in their school. Both received their bilateral cochlear implants as young teens. Thom is currently a sophomore at Hampshire College in Amherst, Mass., majoring in theater. Sam has been accepted at a number of colleges and dreams of being a cochlear implant surgeon one day. Mellert is a classically trained organist and has been married to her husband Hugh, the “rock of Gibraltar,” for 34 years.

HMP Studios

Bob Riter

Meet the Panelists

Options (Schwartz, 2007). Being from a small town in Alabama, where there were few children or adults with hearing loss, the family did research on their own and traveled around to find any information they could. In the end, they chose listening and spoken language and Ella Marie started receiving auditory-verbal therapy. Sy: Lucas was diagnosed early on after he did not pass his newborn hearing screening in California. He was fitted with hearing aids at 4 months old, but as he was getting no benefit from them, the family decided to move on to cochlear implants prior to his first birthday. The family received information on all communication options from Children’s Hospital. Sy and her husband wanted Lucas to be able to sign and speak, because they understood that “cochlear implants were not an answer to his hearing loss but a means for him to hear.” Sy continues, “We wanted to give him every opportunity possible.”

Receiving the Diagnosis All parents recalled the uneasy time between their children not passing the hear-

Words of Advice: Tips and Strategies from Parents Who Have Been There Roundtable participants shared their suggestions for other families. Here is what they had to say:

Michelle Sy “Give your child lots of verbal reinforcement. Although progress may be slow, celebrate everything. Tailor the information you receive to how it will help you. Take a moment to soak it all in. And don’t forget to take care of yourself, because this is the best way you can care for your child.”

Barbara Mellert “Every day is a success. Surround yourself with communities of supportive parents and supportive kids. Make friends with other families who have kids with hearing loss. Educate yourself on the laws and the accommodations: know why you need what you need. Finally, give your children every opportunity to advocate for themselves—it is so much more meaningful.”

Staci Coddington “Children talk like they hear, so don’t always accept that a speech issue is age appropriate, but do suspect that it may be technology related. Just know that no one knows your child better than you do and you are their best advocate. The special education system is designed to remedy issues, instead of preventing them, which is what our kids [with hearing loss] need.”

ing screening test and the concrete diagnosis of hearing loss. As Coddington put it, “Once you have the diagnosis, you can run with it—find out all the options available, start making decisions, take action.” Clayton’s family had no history of hearing loss. She and her husband decided to go to a geneticist at the recommendation of their ENT, which showed that Ella Marie’s hearing loss was due to Connexin 26, a variation in the GJB2 gene. Subsequently, her twin daughters were also confirmed with Connexin 26. Both husband and wife were carriers of that gene, which meant that each of their children had 25 percent chance of having hearing loss. Clayton felt that knowing why her daughters had hearing loss was the piece of the puzzle that helped her spring into action: “It set me on the path to start this journey and start researching everything I could find out to help my children become successful.”

Build a Team and Ask Questions Roundtable participants shared their experiences and strategies for navigating the early intervention system and how they went about finding information on listening and spoken language options in their community. Coddington: The family decided to “double up on everything” for Reagan. They assembled a team of professionals for Reagan both from the school district system in Florida—where the family lived at the time prior to moving to Texas—and the

Lisa Clayton “We celebrate things we can hear. One of our favorite things to do is turn on music in the house and just dance—the kids love it. Every toy or every object in your house can be a tool for developing listening and spoken language. Let your child be a child, but also look at what’s coming next and keep your child’s momentum going. Set high expectations for your child and believe that she/he can reach them.”

Michelle Sy

test to identify hearing loss until she was almost 3 years old, which revealed that she had a profound loss in her right ear and a moderate loss in her left. She already had been using spoken language and even her speech-language pathologist couldn’t believe the degree of hearing loss. “It was kind of a whirlwind because all this was new information. We considered all options and resolved to immerse her in as much listening and spoken language as possible in case her loss was progressive. We took every opportunity to maximize exposure to spoken language.” Clayton: Ella Marie, Clayton’s 3-yearold daughter, did not pass her newborn hearing screening test, which led to her diagnosis of profound hearing loss shortly after that. Clayton recalls her ENT/ cochlear implant surgeon from Children’s of Alabama “did a great job of educating us about not only [her] hearing loss but also what our options would be.” He, along with their listening and spoken language specialists, made sure that she and her husband were educated on all of the communication approaches. The Claytons received Choices in Deafness: A Parents’ Guide to Communication

Lucas Sy-Punsalan at uncle Alan’s wedding.

VOLTA VOICES • M AY / JUNE 201 3

Lisa Clayton

Easy on the Eyes and Ears. The Clayton girls, Isabella, Ella Marie and Sophia, on Valentine’s Day.

children’s hospital in their area. Through the school district, Reagan had a teacher of the deaf, a speech-language pathologist, and an audiologist. Through the hospital system, she received audiology and auditory-verbal therapy. Coddington developed several signature questions for Reagan’s clinicians and asked them over and over again: “If this was your child, what would be your next step? What questions am I not asking? What would you be doing at this stage?” She also made sure that she coordinated between the clinicians in the school system and the ones in the hospital system: “I was the go-between there, the coordinator.” Coddington also emphasized the importance of finding a certified auditory-verbal therapist, a professional who understands deafness and can notice minute changes in a child’s language development. Clayton: As soon as Ella Marie, Isabella, and Sophia were each diagnosed with a profound hearing loss, they immediately began receiving early intervention services with a listening and spoken language specialist. The Claytons’ ENT/cochlear implant surgeon, audiologist, and listening and spoken language specialist from Children’s of Alabama provided information about listening and spoken language to their family. Although these services were two and a half hours away, Clayton felt that this was the right choice for her children. The Claytons also got in touch with families that they knew had gone through the process of receiving a cochlear implant and auditory-verbal therapy. The parents looked for information everywhere they could think of. They utilized their family connections in Memphis,

VOLTA VOICES • MAY/JUNE 201 3

Tenn. Every time they went on a family visit, they took the children to the Memphis Oral School for the Deaf and received services there as well. Clayton concludes, “As a parent, you have to build a team around you of experts and professionals who can help give you the information you need. It is so important that the professionals working with your children have experience with your child’s communication approach, cochlear implants, and understand the background of how you got to where you are.” Sy: At first, the family received services from both the early intervention and children’s hospital systems. After her son, Lucas, was diagnosed with autism spectrum disorder at 2 years and 6 months, Sy and her husband felt that the local school district no longer understood the family’s approach and their choice for listening and spoken language for Lucas. The family decided to move to Berkeley, Calif., where the unified school district had the services the couple felt that Lucas and the family as a whole needed. Sy says, “We wanted him to have every chance, and we wanted him to be part of both the deaf and the hearing worlds.” Sy’s experience led her to realize that a parent must advocate for and be able to articulate their vision for their child. She recommended taking the AG Bell Parent Advocacy Training course, available at no cost through the Listening and Spoken Language Knowledge Center website. Mellert: The family’s remote area in New Hampshire did not have an auditoryverbal therapist. Luckily, there were local speech-language pathologists who had experience working with children with

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Hearing and Speech in Pennsylvania. The Mellerts labeled everything in their house and read extensively to their sons. Mellert said that being chatty paid off in the end. One family friend joked that Mellert and her husband provided the boys with a language-rich environment. “That was a nice way to be told—you talk a lot.”

Staci Coddington

Connect and Advocate

Reagan Coddington: one determined little girl.

hearing loss. The local school system, where Thom and Sam were enrolled, also paid for them to receive a comprehensive education evaluation from the Clarke School for

Participants said that building connections with other families of children who are deaf and hard of hearing as well as professionals was a crucial part of their support network. Being able to talk to and befriend other families living with hearing loss provided them with indispensable information, shared knowledge, and moral strength. Mellert: At first, Mellert felt isolated. Her sons were the only kids with hearing loss in their school and there wasn’t a community of other families with children who were deaf and hard of hearing. The Mellerts started going to the conferences organized by the Clarke School for Hearing and Speech. “I felt like my brain expanded every time I went,” she recalls. Technology helped

FinAidAd_HALF PG_Jan2013:1 1/29/13 4:35 PM Page 1

too. Mellert contributes to and moderates the Listen-Up listserv (health.groups.yahoo. com/group/Listen-Up/), which connected her with other families on the same journey and helped her heal emotionally. She and her husband got involved on the state level in New Hampshire and are currently the parent members of the newborn hearing screening task force. With the help of her audiologist, Mellert advocated successfully to her insurance company to approve hearing aids for her sons as medically necessary. Mellert concluded, “Educating ourselves helped an awful lot emotionally. I also found David Luterman’s books to be extremely helpful.” Coddington: After the family moved to Texas from Florida, her new ENT recommended a cochlear implant for Reagan. This new opportunity led Coddington to research and connect virtually with other families on the same path through the Listen-Up listserv and CI Circle (www.cicircle.org/). “Parents’ willingness to share with other parents was a great resource. It is so inspiring to simply log in and be able to receive or give encouragement.” Coddington and her husband were

Every Child Deserves a Chance

to Listen, Talk and Thrive

dvances in newborn hearing screening and early hearing detection and intervention are A giving more children with hearing loss the opportunity to learn to listen, talk and thrive along with their peers who have typical hearing. That’s why AG Bell offers programs designed to support children and youth with hearing loss who are pursuing spoken language education. PRESCHOOL-AGE FINANCIAL AID PROGRAM PROGRAM OPENS: JUNE 4, 2013 DEADLINE: AUGUST 8, 2013

Eligibility criteria, program deadlines and applications are available at www.ListeningandSpokenLanguage.org.

TEL 202.337.5220 • www.listeningandspokenlanguage.org

VOLTA VOICES • M AY / JUNE 201 3

also profoundly changed after attending the AG Bell Convention last summer. It was, Coddington said, a “huge resource—the standard of care, the professionals invited to speak there and their level of expectation for our children—it was a life-changing experience.” Clayton: An early intervention service coordinator notified the family that beginning on a specified date, their children would no longer receive the services that they were receiving at the time. This decision was made without an IFSP meeting. The family knew that there should not be any predetermined decisions being made about the services that the children would or would not receive without the entire IFSP team, which includes the parents being part of the discussion. Fortunately after the team as a whole convened, it agreed that the needed services would in fact stay in place. Clayton emphasizes the importance of making one’s voice heard. Her background in teaching helped her a lot. She educated herself even further on IDEA (the Individuals with Disabilities Education Act) and made sure that she advocated on behalf

List of References Cited by Roundtable Participants Luterman, D. (1987). Deafness in the Family. Dallas, TX: Pro-Ed. Luterman, D. & Ross, M. (1991). When Your Child Is Deaf: A Guide for Parents. Baltimore, MD: York Press. Luterman, D., Kurtzer-White, E., & Seewald, R. (1999). The Young Deaf Child. Baltimore, MD: York Press. Schwartz, S. (2007). Choices in Deafness: A Parents’ Guide to Communication Options. Bethesda, MD: Woodbine House.

of her children from a place of knowledge and deep understanding of the law. Clayton said, “You have to be able to state why your child needs the services that you are advocating for. You need to know why what you are asking for is appropriate for your child.” She credits the AG Bell Listening and Spoken Language website as a “phenomenal” resource for advocacy and information. Sy: “Talk to parents. There is nothing more comforting than knowing you are not alone. Seek support groups. Get to know your local, state, and federal agencies. And ask the professionals—they are an invalu-

able resource.” She cautioned against obsessive online research and advised taking some things with a grain of salt. At the end, all parents agreed with Clayton when she said, “As a parent, you have to understand your child’s hearing loss and know that your child can be successful just like any other child.” We would love to hear from you and your family! Please share your story with the AG Bell community on our Facebook group or submit your story for consideration in Volta Voices or online at ListeningandSpokenLanguage.org.

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What’s New and Notable in Hearing Aids:

A Friendly Guide for Parents and Hearing Aid Wearers

By Sara Neumann, Au.D., CCC-A, FAAA, and Jace Wolfe, Ph.D., CCC-A

ometimes, it seems that hearing aid technology changes as quickly as computer technology. By the time you get a new one, there’s something else on the horizon that will make your “new” hearing aids seem outdated. However, there are some great things happening that will likely stick around for quite a while. Investing in new hearing aids or maybe even your first pair can be overwhelming. Today, some advanced technology features, which were formerly only available in expensive, high-end hearing aids, are now available in economy-level hearing aids. This article discusses several new hearing aid technologies and suggests questions

that you may want to ask your hearing health providers when you select your next set of hearing aids.

Access to HighFrequency Information Audibility of high-frequency sounds is essential for developing speech and language. The ability to hear high-frequency speech sounds is crucial for understanding speech as well as the rules underlying language and grammar, such as plurality, possessives and subject-verb agreement. Furthermore, research has shown that when children with hearing loss cannot adequately hear sounds above 4,000 Hz, they will have to be exposed to three

times as many words as children with typical hearing to learn new vocabulary and concepts due to the reduced acoustic bandwidth caused by the hearing loss (Pittman, 2008). The “Familiar Sounds Audiogram” shown in Figure 1 illustrates the large number of consonants that reside in the high frequencies. Unfortunately, hearing aids have typically been limited in their ability to provide sufficient audibility for high-frequency sounds. The speech sounds on the audiogram are placed in the pitch and intensity range at which the sounds are typically heard. You can see that high-frequency sounds like /k/, /f/, /s/, and /th/ occur in the highfrequency range (3,000-8,000 Hz) and at

VOLTA VOICES • M AY / JUNE 201 3

very soft levels. These sounds are important to understand plurality, possessives, and for overall clarity of speech. Hearing loss is frequently poorer in the high frequencies relative to the low frequencies. In response to the aforementioned difficulties, hearing aid manufacturers have developed several approaches to improve audibility and understanding of high-frequency speech and environmental sounds. Traditionally, hearing aids have been unable to provide sufficient amplification for sounds beyond 4,000 to 6,000 Hz. This constraint was primarily attributed to a limitation of the hearing aid receiver (the term used to refer to the miniature speaker of the hearing aid), which simply could not

http://audio-accessibility.com/hearing-loss/

Sara Neumann is placing Alyceea’s hearing aid following a hearing aid check.

achieved by linear frequency transposition (LFT), non-linear frequency compression (NLFC), or spectral envelope warping (SEW). A brief explanation of each follows. Linear frequency transposition (LFT) (Figure 2B) takes high-frequency sounds, transfers them down into a lower frequency range, filters the transposed sound and then mixes it in with the amplified lowfrequency sounds, where the patient has better hearing, so that the high-frequency and low-frequency sounds are overlaid on one another. Non-linear frequency compression (NLFC) (Figure 2C) takes high-frequency information above a designated frequency range, referred to as the crossover frequency, and compresses it into a lower range as determined by a pre-set frequency compression ratio. Sounds below the crossover frequency are not compressed, and low-frequency and high-frequency sounds are not mixed with one another.

Jentry Taylor

provide adequate amplification of high-frequency sounds. Additionally, the hearing aid would often produce acoustic feedback (i.e., whistling, squealing) with attempts to amplify high-frequency sounds. Recently, several manufacturers have introduced “extended bandwidth” hearing aids, which promote improved receivers that sufficiently amplify sounds to 8,000 Hz and beyond. Although this technology is promising, there is a paucity of studies showing significant improvements in speech recognition with the use of extended bandwidth amplification. Research studies addressing technologies designed to enhance access to high-frequencies will be discussed following the proceeding discussion on frequencylowering technology. Rather than attempting to extend the limits of the hearing aids frequency response, some manufacturers have developed hearing aids with frequency-lowering technology. Frequency lowering can be

Figure 1. Familiar Sounds Audiogram (high-frequency sounds are circled in red)

h"p://audio-‐accessibility.com VOLTA VOICES • MAY/JUNE 201 3

Low-‐Frequencies

Mid-‐Frequencies

High-‐Frequencies

Figure 2A. Original Speech Signal (Input(Input to the tHearing Figure 2A. The The Original Speech Signal o the HAid) earing Aid)

Start Frequency

Low-‐Frequencies

Mid-‐Frequencies

High-‐Frequencies

Figure 2B. Linear Frequency Transposition (LFT). (Output of o the Aid) Aid) Figure 2B. Linear Frequency TransposiNon (Output f tHearing he Hearing Cross-‐over frequency

Low-‐Frequencies

Mid-‐Frequencies

High-‐Frequencies

Figure C. Non-‐Linear Frequency Compression (Output of tHearing he Hearing Figure 2C.2Non-Linear Frequency Compression (NLFC) (Output of the Aid) Aid) * Lowering is greater at higher * Lowering is greater at hfrequencies. igher frequencies. High-‐Frequency Phoneme

Low-‐Frequencies

Mid-‐Frequencies

High-‐ Frequency Phoneme

High-‐Frequencies

Figure 2D. Envelope Warping (SEW)(SEW) (Output of the Hearing Figure 2D. Spectral Spectral Envelope Warping (Output of the Aid) Hearing Aid)

Spectral envelope warping (SEW) (Figure 2D) is designed to capture a high-frequency sound information and replicate it at a lower frequency. Similar to LFT, the bandwidth of the high-frequency sound information is not altered, SEW moves the high-frequency of sound to a lower frequency range, where the low-frequency and high-frequency sounds are overlaid on one another. However, in contrast to LFT, SEW also amplifies the high-frequency sound and presents it at its

Does my child (do I) have access to the full spectrum of speech sounds? What type of hearing aid technology is available to help me or my child hear high-frequency sounds of speech? What types of signs should I look for to indicate my child (I) have access to high-frequency speech sounds? What type of signs should I look for to indicate that frequency-lowering technology may be distorting the speech my child (I) hears?

Ask your audiologist 26

original frequencies as well (Rodemerk et al., n.d.; Simpson, 2009). All of the aforementioned frequency-lowering strategies possess potential advantages and limitations, and there are no published research studies showing one approach to be superior to another. However, published studies have shown that each of these different frequency-lowering technologies can improve audibility and speech understanding of high-frequency speech sounds for children and adults with severe to profound hearing loss (Auriemmo et al., 2008; Glista et al., 2009; Kuk et al., 2010; Simpson et al., 2005; Galster et al. 2011). Additionally, Wolfe and colleagues (2010; 2011) determined that NLFC improves audibility for and recognition of high-frequency speech sounds for children with moderate highfrequency hearing loss, and they showed that performance with NLFC improved with experience (i.e., acclimatization) with the frequency-lowering technology. As such, several weeks of NLFC use may be necessary before benefit is fully realized. More recently, Wolfe and colleagues (submitted, 2013) compared aided thresholds and speech recognition for a group of children who had mild hearing loss and used hearing aids with NLFC and

extended bandwidth. NLFC provided better access to low-level high-frequency sounds as well as better recognition of high-frequency speech sounds when compared to hearing aids with extended bandwidth. As previously mentioned, there can be disadvantages associated with frequencylowering technology. In particular, if the frequency-lowering is too aggressive, then speech and environmental sounds may become distorted resulting in poor sound quality and a reduction in speech understanding. Audiologists should properly select good candidates for frequency-lowering technologies, program this technology appropriately for the individual’s needs, and verify the benefit the wearer receives through the use of probe microphone measures (ask your audiologist about probe microphone measures if you are unaware of this important hearing aid assessment tool). Further, the benefits of frequency-lowering technology should be validated with behavioral testing and feedback from parents, speech therapists, and teachers. Researchers have suggested several different practices to effectively fit and verify frequencylowering technology as well as to determine candidacy for these technologies (Glista & Scollie, 2009; Kuk, 2013; Simpson, 2009; Wolfe et al., 2010, 2011).

Hearing Aid Noise Reduction Technologies One of the most pressing difficulties of persons with hearing loss is an inability to effectively understand speech in the presence of noise. Studies have shown that around 40% of adult wearers continue to be unsatisfied with their ability to hear in noise after being fitted with hearing aids (Kochkin, 2010). Numerous research studies have shown that children with hearing loss experience even more difficulty understanding speech in noise when compared to their peers with typical hearing or adults with hearing loss (McCreery et al., 2010; Stelmachowicz et al., 2001). Hearing aid manufacturers have developed numerous technologies to improve performance in noise, including directional microphones, digital noise reduction (DNR), wind noise reduction, and dereverberation algorithms. Directional microphone technology typically employs two or more microphones to amplify sounds coming in from

VOLTA VOICES • M AY / JUNE 201 3

the front as prescribed, while limiting or reducing amplification for sounds coming from the sides and back. This approach assumes that the wearer will face the signal of interest in a noisy environment, and consequently, the speech will be enhanced and the surrounding noise will be reduced. Numerous research studies have shown that directional microphones improve speech understanding in noise more than any other technology currently built into hearing aids (although directional microphones do not provide as much improvement in speech understanding in noise as remote microphone radio frequency systems—also commonly known as FM systems—which are an assistive technology that may be used with hearing aids to provide the most improvement in speech recognition in noise (Schafer & Thibodeau, 2004)). As a result, directional technology is routinely recommended for adult hearing aid wearers. In contrast, there are conflicting recommendations regarding the use of directional microphones in children (Bagatto et al., 2010; King, 2010; McCreery et al., 2012; Ricketts et al., 2010). For instance, the Ontario guideline for fitting hearing aids for children discourages the use of directional microphones for children, while the Australian guideline recommends the use of directional hearing aids for children (Bagatto et al., 2010; King, 2010). The hesitation associated with directional microphone use in infants centers around the concern that directional amplification may limit a child’s access to important sounds that arrive from behind him/her. We know that incidental listening, the term used to describe a child’s tendency to listen to speech that is not directed specifically to him or her, is responsible for a great deal of a child’s vocabulary and social development. In fact, Dr. Carol Flexer has estimated that as much as 90% of what a child learns during the first few years of life comes from incidental listening (Cole & Flexer, 2010). Could directional microphones, which inherently limit access to sounds arriving from behind a child, interfere with incidental listening? There has not been enough research examining directional hearing aid use in young children to fully answer that question yet. It should be noted that many contemporary hearing aids feature what is often referred to as adaptive directionality, in

VOLTA VOICES • MAY/JUNE 201 3

which the hearing aid amplifies sound from all directions equally (e.g., omni-directional) in quiet environments and automatically switches to directional mode in noisy environments. In fact, some hearing aids even go a step further and remain in omni-directional mode if the primary signal arriving from behind the user is speech. With this approach, the risk of missing out on important speech signals arriving from behind or from the side of a hearing aid wearer is limited. It is likely that there are differences in adaptive directional algorithms from one manufacturer to another, and consequently, there is not enough evidence to determine whether they are suitable for children. Although directional microphones may improve speech recognition in noise, it is probably prudent to refrain from their use until a child is old enough to consistently orient toward the signal of interest and provide verbal feedback about the potential perceived advantages and limitations of directional amplification. Hopefully, ongoing research and development will clarify the question of whether young children should use adaptive directional amplification and possibly even result in a hearing aid that limits the potential disadvantages of directional amplification for children. Digital noise reduction (DNR) is another hearing aid noise technology designed to improve performance in noisy environments. DNR analyzes the sound arriving to the hearing aid, determines whether it is speech or noise, and reduces the aided gain when background noise is the dominant input. Research conducted with adult hearing aid users has shown that DNR significantly improves listening comfort in noise, and wearers consider DNR to be one of the most important features in their hearing aids (Powers et al., 2006; Kochkin, 2010). Other studies have indicated that DNR provides at most a modest improvement, and in many cases, no change in speech understanding in noise (Bentler, 2005; Peeters 2009). Most studies have shown no degradation in speech recognition in noise for adults using DNR. Like directional technology, DNR is routinely recommended for adult hearing aid wearers. As with directional hearing aids, we are still examining the appropriateness of DNR for young children. Research with pediatric hearing aid users has essentially shown

Should my child (I) be using directional microphones and digital noise reduction in her hearing aids? Should my child (I) have a special “noise program” or should my child (I) use an adaptive program? How will we know if it works? What technology would you recommend for my child to optimize her listening abilities in noise?

Ask your audiologist that DNR does not degrade or improve speech recognition in noise (Bentler et al., 2010; McCreery et al., 2010). Bentler and colleagues (2010) did show that DNR may improve listening comfort for children in noisy situations. They also showed that children’s novel word learning abilities were improved with the use of DNR, a fact they attributed to a decrease in the cognitive processing load afforded by improved listening comfort associated with DNR. Taken collectively, these findings suggest that DNR may be quite beneficial for children and should be considered for use with pediatric hearing aid wearers (McCreery et al., 2010; Stelmachowicz et al., 2010). However, it is important to remember that not all hearing aids work alike, and it is possible that some DNR algorithms may reduce gain for speech. It is imperative that the audiologist verify that gain is not reduced when speech is present. Contemporary hearing aid testing equipment typically allows for this type of verification. The interested audiologist is referred to an excellent review by McCreery and colleagues on electroacoustic assessment of hearing aids with DNR (McCreery, Gustafson, & Stelmachowicz, 2010). Once the audiologist does determine that DNR does not reduce gain when speech is present, DNR should be considered for pediatric hearing aid wearers.

Binaural Processing There is a reason we have two ears. In people with typical hearing, the ears work together to better understand speech in noisy environments as well as to determine the direction from which a sound originates. For instance, we can tell that a sound

Will my hearing aids work wirelessly? What are the different ways that they can do that? How may I use this technology to improve my hearing in situations in which I struggle? Do my hearing aids allow wireless streaming? Are additional accessories available to help me (my child) in difficult listening situations (e.g., telephone, TV, restaurants, etc.)? What is the additional cost, and what type of advantages do they offer?

Ask your audiologist

volume or a program on one hearing aid and the change automatically happens at the other hearing aid. Some hearing aids also have the capability of allowing the user to hear the sound from a telephone in both ears simultaneously when the phone is placed next to one of the hearing aids. Finally, some advanced hearing aids share information between their microphones in order to allow for “super directionality.” As shown in Figures 3B and 3C, beamforming achieved by two hearing aids working together can be much more precise than either hearing aid working alone.

Streaming Accessories

originates from our right side, because it is a little louder and arrives a little earlier at the right ear than the left. Hearing aids are now capable of sharing information with one another in an attempt to preserve the natural differences that exist between sounds arriving at the two ears and mimic the way the natural auditory system works. Furthermore, some hearing aids work together so that a wearer may adjust the

Almost every major hearing aid manufacturer now has a way to wirelessly link your hearing aids with your personal technology (from phones to computers to TVs). Some companies use “streamers” (a device you wear around your neck to allow you to interface between the hearing aids and the accessory) to wirelessly connect to your personal products, while other manufacturers have developed hearing aids that allow you to wirelessly connect without an interface device. Some manufacturers also offer a

Noise

Binaural processing between hearing aids

Noise Noise

Noise

listener

Noise

listener

Noise

How are you?

Noise

How are you?

Noise

speaker

Figure 3A.

How are you?

speaker

Figure 3B.

speaker

Figure 3C.

Figure 3. Directionality with Binaural Processing. A “listener” with hearing aids is attempting to converse with a “speaker.” Noise surrounds both persons (gray speech bubbles). Figure 3A. Omni-Directional Microphones without Binaural Processing: the hearing aids are amplifying sounds from all directions equally. Figure 3B. Directional Microphones without Binaural Processing: a directional hearing aid provides amplification for sounds arriving from directly in front of the wearer. Figure 3C. Directional Microphones with Binaural Processing: the binaural directional response is more focused on the sounds arriving from the front than the directional response in Figure 3B with the potential to provide better speech recognition in noise.

wireless microphone accessory, which can pick up an important voice and wirelessly send it to the hearing aids directly or via the streamer. This type of technology is great for noisy environments such as a restaurant, because the voice of a parent (or spouse) can be captured by the microphone and sent directly to the hearing aids of the child (or significant other). Smartphone technology is also paving the way to allow you to use an app to control your hearing aids. This is an everevolving technology, so ask your hearing professional about the best option for your lifestyle.

Digital Modulation (DM) Radio Frequency (RF) Systems Personal remote microphone radio frequency (RF) systems have been around for a long time, and have long been recognized as the most effective means to improve speech recognition in noisy places. In short, these systems possess a microphone/transmitting unit that captures the signal of interest and sends it by way of a radio signal to small receivers that are coupled to the user’s hearing aids or cochlear implant sound processors. Because the microphone is positioned closely to the mouth of a parent or teacher, the speech signal captured by the system’s microphone is typically much higher in volume level than the surrounding background noise. The transmitting device may also be plugged into a computer, MP3 player, classroom smart board, etc., to directly capture and send that audio signal of interest to the receivers. Historically, these types of systems have used an analog frequency modulated (FM) RF signal to transmit the signal of interest. Recently, manufacturers have started introducing digitally-modulated RF systems, which are similar to Bluetooth® technology used in several recreational and business applications. Digital RF systems are able to provide a higher level of analysis and control over the signal that is captured by the microphone and eventually delivered to the receiver. Furthermore, these systems typically use a carrier frequency that “hops” from frequency to frequency many hundred times per second, a characteristic that makes digital RF systems less susceptible

VOLTA VOICES • M AY / JUNE 201 3

to interference from nearby RF devices (Wolfe et al., in press). Studies have shown that hearing aid and cochlear implant users receive great benefit from dynamic digital RF systems when compared to traditional/classic and dynamic FM systems (Thibodeau, 2013; Wolfe et al., in press).

Waterproof/Water Resistant Perhaps it’s just icing on the cake, but besides all of the great technology that allows individuals to hear better in a variety of settings, several hearing aid companies have now made some of their products water-resistant. Some even claim you can swim with them. It is important to consider how the warranty works if you do choose to participate in water activities with the hearing aids on. Some are not “waterresistant” per se, but have a special coating inside the electronics that helps repel moisture—especially good if you (or your child) are susceptible to excessive sweating or have wax problems. If you know that you have this specific concern, let your provider know so they can request that special coat-

new technology for patients in your age range (or the range of your child). The best technology in the world can be worthless if it is not selected and fitted appropriately to meet the wearer’s needs. Remember, we should work together to use new technology so that each person with hearing loss reaches his/her full potential. Your hearing is worth it!

Should I consider use of a personal digital RF system? Are my hearing aids waterproof or water-resistant? What is the best way to care for them?

Ask your audiologist

References

ing is applied to your hearing aid as it may not be standard in all cases. In summary, hearing aid technology has improved significantly over the past few years. Although it is not perfect, contemporary technology can improve the communication abilities of most everyone with hearing difficulties. If you are struggling with your hearing, you should consult your audiologist to determine whether new technology may alleviate your communication difficulties. Your hearing is too important to struggle through life with inferior technology. Additionally, make certain you see a licensed audiologist who is experienced with providing

This article and a full list of references is available at ListeningandSpokenLanguage.org/ ParentGuideHA.aspx. Bagatto, M., Scollie, S.D., Hyde, M., Seewald, R. (2010). Protocol for the provision of amplification within the Ontario infant hearing program. International Journal of Audiology, 49(1), S70-S79, doi:10.3109/14992020903080751. McCreery, R., Gustafson, S., Stelmachowicz, P.G. (2010). Should digital noise reduction be activated in pediatric hearing aid fittings? A Sound Foundation in Early Amplification. Retrieved from http://www.phonakpro.com/us/b2b/en/events/ proceedings/soundfoundation_chicago2010.html. Stelmachowicz, P., Lewis, D., Hoover, B., Nishi, K., McCreery, R., & Woods, W. (2010). Effects of digital noise reduction on speech perception for children with hearing loss. Ear and Hearing, 31(3), 345-355. Wolfe, J., John, A., Schafer, E., Hudson, M., Woods, W., Wheeler, J., Hudgens, K., Neumann, S. (submitted). Evaluation of wideband frequency responses and non-linear frequency compression for children with mild hearing loss. Journal of the American Academy of Audiology.

St. Joseph Institute for the Deaf

At St. Joseph Institute for the Deaf (SJI), we believe that children with hearing loss deserve the opportunity to listen, speak and read. As international leaders in listening and spoken language (LSL) based education, our highly trained staff of certified deaf educators, speech therapists and audiologists help children develop oral language without the use of sign language. SJI is the only school for the deaf to be fully accredited by the prestigious Independent Schools Association of the Central States (ISACS). Visit us at sjid.org & ihearlearning.org for more information on our locations and services

Indianapolis Campus ihear- Internet Therapy St. Louis Campus 9192 Waldemar Rd. Indianpolis, IN 46268 (317) 471-8560

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Project ASPIRE: Cultivating Rich Early Language Environments for All Children By Kristin Leffel, B.S., Elizabeth Suskind, B.A., and Dana Suskind, M.D.

roject ASPIRE—or Achieving Superior Parental Involvement for Rehabilitative Excellence—is founded upon the belief that every child has the right to communicate and engage with the world around him or her. Each child has a unique potential for listening and spoken language, and all parents have the capacity to help their child reach that potential. Central to Project ASPIRE’s guiding principles is the belief that parents are their child’s first and most important teachers and hold the key to unlocking their child’s full potential. But there are stark differences in outcomes in children who start with very similar potentials. An ever-growing body

of research demonstrates that children’s early language environments are the pivotal factor determining their ultimate skills as effective communicators. Even with early auditory access, a child’s early language environment can make or break his or her listening and spoken language, school readiness, and ultimate lifelong trajectory. Disparate early language environments lead to disparate outcomes. What is it about a child’s early language environment that is so important? The salient difference is how and how much parents talk with their children. In a ground-breaking study, researchers found a startling difference in how much parents talk with their children: children

from more affluent homes heard 30 million more words by age 3 than children from more impoverished environments (Hart & Risley, 1995). Yet the language disparity is not merely quantitative. Children in language-rich environments heard more complex, descriptive language, more encouragements, and also fewer directives. The impact of these environments on children’s school readiness was profound. The children who heard 30 million more words—those from strong early language environments—began school on track for reading and learning and held their advantage over their peers. The children who heard 30 million fewer words—those

VOLTA VOICES • M AY / JUNE 201 3

Inspired to ASPIRE Spotlight on…Jerlene and Ma’Kya! Ma’Kya, 18 months old, was unilaterally implanted at 8 months. Her mom, Jerlene, 19, is a recent Project ASPIRE graduate and speaks of her experience with the program and of life as a mother of a child with hearing loss.

ASPIRE: How did Project ASPIRE help you? Jerlene: [There was] so much stuff that I did not know coming into Project ASPIRE. I thought that with a cochlear implant, children just listen and then they just know. After leaving here I know that you can’t just put [the implant] on and they start talking. It doesn’t happen like that; it’s a process. It happens over time.

ASPIRE: What parts of the ASPIRE curriculum was helpful to you? Jerlene: The videos showed me that other parents feel the way that I felt and still feel and are still going through it. I liked the parent videos a lot. If somebody just says something like “this is how you do it” and never explains it or shows you, I don’t think I would have gotten it as much. So not only did you show me on the laptop with the other parents, but we did it here before we left, so I think that was really good.

from weak early language environments— began school with smaller vocabularies, were poorer readers, and remained behind their peers. Early language environments are everything. This is the stark scenario we see all too often at the Pediatric Hearing Loss and Cochlear Implant Program at the University of Chicago Medicine. Even with prompt, appropriate auditory access, under-resourced children tend to fare more poorly than their peers from more affluent environments. In general, all children from weak language environments fall short from meeting their learning potentials. For children with hearing loss, the consequences of an impoverished language

VOLTA VOICES • MAY/JUNE 201 3

Lia Ferro

Jerlene: Honestly, I really did not play with her as much before as I do now. I didn’t think it was so important

ASPIRE: How has ASPIRE helped Ma’Kya? Jerlene: She’s doing way more. She’s talking a lot more, she uses a lot more words and she’s putting sentences together now….it’s helping her a lot.

ASPIRE: What was your biggest takeaway? What was the most useful piece of information that you felt like you got from Project ASPIRE? Jerlene: To talk more and to play with her and to interact with her more. Just because she’s a baby doesn’t mean you can’t have a conversation with her. You have to talk to her more. And the TV! I did not know about the TV. Before I came here the TV was on so much that that’s all you would hear in the background if you were to call. But now I’ve minimized the TV…I don’t use it in the morning at all. That’s just me and her time.

ASPIRE: Is there anything you want to add for other parents to know?

Kristin Leffel

Dana Suskind with 2-year-old Cordero who received his first implant at 15 months and his second implant at 17 months.

ASPIRE: What do you do differently with Ma’Kya now that you’ve been through Project ASPIRE?

that I play with her. She has cousins who can play with her but it is more important to play with her [myself] and give her language. When I play with her, I can give her a lot more language than what my niece can give her. I can describe probably everything that we’re doing, like, “we’re going to build the blocks, the red blocks, let’s build them.”

Mother, Jerlene, and daughter, Ma’Kya— Project ASPIRE graduates

Jerlene: It gets harder before it gets easier. It’s still hard. I still have moments where I cannot believe that I’m 19 with a child whose hearing is impaired. It’s still very, very, very hard… Don’t give up. Don’t stop. In the long run it’s going to help. It’s going to help your child a lot. I’m one lucky person to have Ma’Kya. She changed me a lot.

Project ASPIRE

environment are even farther reaching: their very ability for basic communication is put at risk. Our goal at Project ASPIRE is to address this by equipping parents with both the knowledge and skills to provide their children with the rich language environments necessary to reach their full potentials. The program is an evidencebased, early intervention (EI) curriculum designed to enrich the early language environments of underserved children

Figure 1: Scientific concepts are communicated in engaging and easy-to-understand animations. “When your child’s device is on, your words can go in his ear and make connections in his brain.”

ages birth to 5 whose families have chosen listening and spoken language as their primary form of communication. Holding true to Project ASPIRE’s foundational tenet that parents are children’s first and most important teachers, the curriculum is parent-centered, delivering practical, accessible content that is easy to remember and easy to incorporate into everyday routines. Our computer-based, multimedia curriculum presents a classic listening and spoken language approach with a fresh educational approach that combines animation, videos of real families in daily routines, and a novel strategy we call “quantitative linguistic feedback” (Suskind et al., 2013). Parents meet with ASPIRE-trained early interventionists in their own home over the course of 10 weekly home visits. Sessions are discussion-driven, interactive, and tailored to the unique needs of the child. Through this parent-EI partnership, parents learn not only concrete, practical strategies for promoting listening and spoken language with their child, but

also tangible ways to adopt those strategies into their everyday lives. The quantitative linguistic feedback is parents’ important partner in putting what they learn into action. Through the use of the LENA (Language Environment Analysis) technology, which functions as a word pedometer, parents can actually see what their child hears throughout the day. With weekly feedback on their language and interaction with their child, the parent-EI team can track parents’ progress as they enrich their child’s language environments. The Project ASPIRE curriculum is the result of multidisciplinary collaboration. Its scientific foundation has been translated into easy-to-understand concepts and strategies useful to families and EI therapists throughout the country. Understanding where the need primarily lies, Project ASPIRE has set a high priority on diversity and cultural sensitivity in a format accessible to underserved and hard to reach communities. Children’s early language environments have an immutable impact on the

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VOLTA VOICES • M AY / JUNE 201 3

Jadiel, 1 year old, and his parents at an ASPIRE session. He got his first implant at 10 months and will be getting his second one at 24 months.

rest of their lives. Parents are the key to help their children flourish. We know the disparity in language environments, and thus outcomes, will not be alleviated until all families have access to the resources they need. Project ASPIRE is dedicated to partnering with parents to ensure that all children with hearing loss reach their full listening and spoken language potentials.

VOLTA VOICES • MAY/JUNE 201 3

References Hart, B., & Risley, T. R. (1995). Meaningful Differences in the Everyday Experience of Young American Children. Baltimore, MD: Paul H Brookes Publishing. Suskind, D., Leffel, K. R., Hernandez, M. W., Sapolich, S. G., Suskind, E., Kirkham, E., & Meehan, P. (in press). An exploratory study of “quantitative linguistic feedback”: effect of LENA feedback on adult language production. Communication Disorders Quarterly. First published online before print on February 1, 2013, doi: 10.1177/1525740112473146.

“In few specialties do you have the opportunity to impact the life of a child so profoundly. Cochlear implantation is a true modern medical miracle, the journey for the child and family incredibly exciting and gratifying. I find it an honor to be allowed, by the families, to be a part of that process,” said Suskind in a recent interview for AG Bell’s LSL Leading Edge e-newsletter for AG Bell professional members. Visit ListeningandSpokenLanguage. org/LSLSymposium to learn more and register!

LSL Symposium Presentation

Elizabeth Suskind

Dana Suskind, M.D., will focus on Project ASPIRE during her general session presentation at the upcoming 2013 AG Bell Listening and Spoken Language Symposium, July 18-20, in Los Angeles, Calif. At the University of Chicago, Suskind is a professor of Surgery and Pediatrics in the Section of OtolaryngologyHead and Neck Surgery and director of the Pediatric Cochlear Implantation Program.

George W. Fellendorf:

Honoring the Individual, Remembering His Legacy By Anna Karkovska McGlew

he AG Bell board of directors and other honorable guests and volunteers recently gathered at the Volta Bureau for a ceremony recognizing the distinguished service of George W. Fellendorf, Ed.D., who served as the executive director of AG Bell and as the editor of the association’s peer-reviewed journal The Volta Review, from 1962 until 1978. Dr. Fellendorf ’s three daughters—Joyce F. Jackson, Linda J. Mousavi and Carol E. Barbierri—recently bestowed a generous gift to AG Bell in honor of their father, which inspired the event. “Fifty years ago he began his service at AG Bell; it is most fitting that five decades

later we remember and honor his service to the association,” noted Joyce F. Jackson. In gratitude of their lasting gift to the association, AG Bell President, Donald M. Goldberg, Ph.D., CCC-SLP/A, FAAA, LSLS Cert. AVT, dedicated the fourth floor of the Volta Bureau as the George W. Fellendorf editorial suite. This is the space where AG Bell staff develop all communication and editorial materials disseminated by the association, including the Volta Voices magazine and The Volta Review. In addition, this space is an archive for editorial records and photos that document the history of the association and its members. George W. Fellendorf was born in 1925 in Long Island, N.Y. Prior to serving as

executive director of AG Bell, Fellendorf volunteered and served for the U.S. Navy and trained and worked in electrical engineering. Dr. Fellendorf and his wife Hazel first became involved with AG Bell when their middle daughter, Linda, was born with severe hearing loss. The Fellendorfs chose a listening and spoken language outcome for their daughter, so that she could attend local public schools alongside her sisters. They brought Linda to the Helen Beebe Speech and Hearing Center in Easton, Pa., where she received services from one of the pioneers in the field of listening and spoken language, Helen Beebe. Dr. Goldberg recalled first hearing about George Fellendorf as a volunteer at

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VOLTA VOICES • MAY/JUNE 201 3

with hearing loss, “George was a major force behind the AG Bell scholarship program and formulated the ‘Hearing Alert’ program to foster early identification of hearing loss in babies and young children. The legacy of this program is the Universal Newborn Hearing Screening program that is mandated in most states of the United States.” At the dedication ceremony, Dr. Goldberg was speaking for many as he reminisced about Dr. Fellendorf not only as executive director of AG Bell but as a person: “I will forever remember the twinkle in his eyes and the many acts of kindness he has offered to me, and so many of us.” For Suez Kehl Corrado, working as art director at AG Bell in the early 1970s, Dr. Fellendorf was a “father figure—an intelligent, caring boss whose foresight set the path of the association as a champion for the rights, education, and independence of people with hearing loss.” Bettie Donley, who served as AG Bell’s Director of Publications and editor of World Traveler magazine from 1969-1976, shared her memories about Dr. Fellendorf at the reception following the dedication ceremony: “One of George Fellendorf’s greatest talents was working with people to develop their own talents, to encourage them when they were hesitant to take on new responsibilities. His interest and support of all aspects of AG Bell made for a happy, productive workforce.” Dr. Fellendorf continues to be active in the field of listening and spoken language, mentoring and guiding other parents of children with hearing loss, contributing to AG Bell publications, and serving as an inspiration to individuals living with hearing loss and the professionals that serve them.

CAPA Studio Photography

the Helen Beebe center in the 1970s during his college years: “George and Hazel were described as this wonderful couple whose daughter, Linda, had been seen by ”Beebe” and her colleague, “Guffy” (Antoinette Goffredo). I do not recall meeting any of the Fellendorfs then, but once in graduate school, Dr. Fellendorf’s name was ever-present—as the Executive Director of AG Bell and the Editor of The Volta Review.” The Fellendorfs learned a great deal about the education of children who are deaf and hard of hearing and mentored other parents, with Dr. Fellendorf becoming the secretary of the parents division of the association. Fellendorf’s experience led him to a career change from engineering to pursuing and

earning a doctoral degree in special education. He advertised in The Volta Bureau seeking a position at a school or a clinic. In 1962, at the AG Bell Convention in Detroit, Fellendorf received an unexpected opportunity that, in retrospect, was the culmination of his passion and dedication to his daughter’s success. He accepted an offer to become the executive director of AG Bell. It was a position for which he was uniquely prepared as he understood the needs of parents of children with hearing loss. Robin Wittusen, editorial assistant who worked with Dr. Fellendorf, captured Dr. Fellendorf’s suitability for the position, “A parent of a child with hearing loss himself, he had empathy and understanding of the parents’ situation, and he was both a professional resource for them as well as a mentor and inspiration.” Wittusen continued, “He was dedicated to promoting listening and spoken language education for children who are deaf and hard of hearing and worked tirelessly to do everything he could to encourage their parents to pursue this course.” Fellendorf’s 16 years of service coincided with gradual but dramatic changes in the field of listening and spoken language. In 1973, the Rehabilitation Act passed, one of the first major civil rights laws which created and extended rights to individuals with disabilities, increasing the number of students who are deaf and hard of hearing attending mainstream schools. Richard H. Israel, Ph. D., who worked as Director of Professional Services and Programs at AG Bell from 1971 to 1975, vividly remembered two of Dr. Fellendorf’s lasting legacies to the association and children

George Fellendorf with his three daughters Joyce F. Jackson, Linda J. Mousavi and Carol E. Barbierri at the Volta Bureau.

Special Section: Recognizing the Generosity of Our Donors

The Honor Roll of Donors (January 1, 2012 – December 31, 2012)

AG Bell greatly appreciates our donors who generously support our association. This honor list includes the individuals, corporations and foundations that have made financial contributions during fiscal year 2012 (January 1 – December 31) in support of AG Bell programs and services.

Every effort has been made to ensure the accuracy of this list, including spelling of names and placement of donors within respective categories. However, omissions or errors may still have occurred. We apologize for any inaccuracies and ask that you please notify Gary Yates, AG Bell manager of association and donor relations, at gyates@agbell.org if you find an incorrect listing. Thank you. Circle Alliance $100,000 and above Anonymous

President’s Circle $50,000 – $99,999 Helen Beebe Speech and Hearing Center The UPS Foundation

Volta Bureau Circle $10,000 – $49,999 Advanced Bionics Cochlear Americas Hamilton Relay CapTel Joyce Jackson J. Willard and Alice S. Marriott Foundation MED-EL Corporation National Institutes of Health – National Institute on Deaf and Other Communication Disorders Rothman Family Foundation Arlene and Jay M. Tenenbaum The Wasily Family Foundation

Benefactors $5,000 – $9,999 Anonymous Jaime Buehl Captel, Inc. Deafness Research Foundation Oticon Inc. Rochester Institute of Technology/National Technical Institute for the Deaf Sprint Relay-Captel The Max and Victoria Dreyfus Foundation, Inc.

Patrons $1,000 – $4,999 America's Charities AT&T Relay

Audbling Beginnings for Parents who are Deaf and Hard of Hearing Robert Bush Caption Call Marketing Caption First, Inc. Central Institute for the Deaf Combined Federal Campaign of the National Capital Area Comfort Audio, Inc. Mark and Leslie DeNino DePaul Institute Desert Voices Oral Learning Center Ear Technology Corporation Nan Ellen East Donald M. Goldberg Beverly Halpert Handfinger Press, LLC Andrea Hill Sam Jadallah Learn To Talk Around the Clock Local IND Charity MAXIMUS Foundation Micropower Battery Company Milton M. Meyer, Jr and Mildred B. Meyer Foundation National Technical Institute For The Deaf Michael Novak Oral Deaf Education Phonak, Inc Plural Publishing QuickCaption, Inc. Joseph Rosenstein Rosie's Ranch Sophie's Tales, LLC St. Joseph Institute for the Deaf – St. Louis Sunshine Cottage School & UTHSCSA The Arizona School for the Deaf and Blind The Children's Hearing Institute The Stephen, Mary, Mitchell, Emily Ross Family Charitable Fund Carolyn and Steven Vonderfecht Jay Wyant Karen Youdelman

Supporters $500 – $999 John Bechtel Thomas E. Biron Blue Tree Publishing Butte Publications, Inc. Central and Northern New Mexico CFC Holly Clark Delcor Technology Solutions, Inc. Edward Deroche DiscoveryToys Christine Flint Kevin Franck Gateway Combined Federal Campaign Alexander T. Graham Judith Harrison and Tim Campos LENA Foundation Ken Levinson Mary Lucchesi Keith Mallonee Merrill Lynch Microsoft Matching Gifts Program Midland Park Public Schools – HIP/Ship Mill Neck Manor School for the Deaf Moog Center for Deaf Education Morgan Stanley Smith Barney Global Impact Funding Trust, Inc. Mark Sandridge Kevin Shaughnessy Gwendolyn Sommer Sarah and J. Paul Sommer John Stanton The Care Project, Inc. UnitedHealth Group Employee Giving Campaign Wendy Will Carol Wyant Dale E. Young Champions $250 – $499 American Express Global Volunteer Action Fund Program Christine Anthony

Association of Medical Professionals with Hearing Loss Laura Baker Jessie and Travis Becker Nancy Bellew Steven Browne Harrison Bubb Liliana Buza John Fread Dorothea French Mary Jo Garrison Global Impact Marsha Haines Harris Communications Karen Hoppe IBM Employee Services Center Michael Kay King County Combined Federal Campaign Wendy Kupfer Ilena Lea Diana Lee Christopher Lehfeldt Lilly Endowment, Inc. Mile High United Way Multi Parts Supply Maureen Murphy David B. Pisoni Lyn Robertson Rogers & Company, CPAS PLLC Susan Schonfeld David K. Smith Virginia and Robert Stern Esther Tecklenburg The Townsend Group, Inc. Hans Thomann United Way of Central Maryland United Way of Hunterdon County United Way Metro Chicago United Way-PCFO Denise Wray

Associates $100 – $249 Joni Alberg Doris Blanchard Lynn Bright Mildred Bross Diane Browne Jennifer Bullock

CFC of North Central Texas CFCSENC Fund-0656 Chattanooga Area CFC Mary Compton Peggy Cooley Mary Ann Costin D. K. Couch David Current James Davis Marilee Day Patricia Demoff David Diamond Cheryl Dickson John Dietel Bruce Donenberg D. Ensor Marian Ernst Joan Esposito Sherri Fickenscher Carol Flexer Ashley Garber Robert Glassman Thomas Glaze Jay Gold Laura Gold Stephen Gold Emilie Goldberg Robert Goldberg Jonathan & Jenny Graham Greater Olympic Penninsula Sylvia Greenberg Sara Grosvenor Ralph Guertin Mary Hale Bin He Connie & Ed Heintzman Janet Higby Gregory Hubert Michael Hunter David M. James Allen Janger Edmond Jarret Fred Jones Janet Kahn Norma Kalkhoff Anne Kearney Anthony Keck Kemco Alarm Co., Inc. Virginia F. Keville Margaret Klarman Meredith K. Knueve Sidney Kraizman Joseph Kulakowski Cynthia Leigh Irene Leigh Robert Lillie Betty Lim

Amanda Mangiardi Leonisa Margiasso Amy McConkey Robbins Donald McGee Catharine McNally Richard Mead Kevin Miller Jeanne Nicholl Andrew Ober Mildred Oberkotter Kathleen O'Neill Donald Paterson Christopher Patton Christina Perigoe JoAnne Price Scott Purcel Ramesh Ramanathan Elizabeth Reed Stephen Rexrode Jacqueline Rizik Betty Ann Rodgers James Rodgers Eleanor Rosenfeld Christine Rothdeutsch Karen Rothwell-Vivian Deganit Ruben Takeko Sakakura Natalie Sanchez Jerry Sartain Linn Schuster Mary Simmons Joseph Slotnick Cindy and Jon Smith Edward Smith Maria Smolanick Robert Snyder Donna Sorkin Peter Steyger Linda Stone Christen Stotts Kathleen Sussman Mary Sylvester Sally Tannenbaum Tate & Tryon Michael Tecklenburg Joanne N. Travers Michael Traynor Susie Trotochaud United Way of Lake County James Voth Frederick Waldschmidt Peter Weber Robert Whipple James Wolff Garrett Yates Nancy Young Mardie Younglof

Friends $25 – $99 Henry Adler Carol Aguirre Betty Aiken Kelly Anderson Anonymous Akio Arai Marie Ardis Paul Arenberg Rachel Arfa Elaine and Joel Axelrod Ali and Gary Axelrod

Dina Baker Theresa Ballard Andrew Ban Carol Ban Beth Bansen John Bard Christine Barton Faith Beaupre Kristen Bergeron Suzanne Bidwell Pamela Billet Barbara Bogner Priscilla Bollard Susan Boswell Alexis Boutacoff Tamala Bradham Pranita Brahmapurikar Ralph Braunschweig Corinne Brennan Daniel Briggs Arnold Brody Barbara Brown Evan Brunell Richard Budka Anitta Burg John Burke Nancy Caleffe-Schenck Lisa Cantwell Ilana Cellum Barbara Chertok Yingchu (Beatrice) Chuang Kate Ciarfella Columbus/Fort Benning Combined Federal Campaign – MA Combines Federal Campaign – OH Combined Federal Trade Caroline Conway Tanya Cook Francis Coyle Sherie Coyner Michelle Crawley Doug Dawson de Beaublen, Knight, Simmons, Mantzaris & Neal, LLP Joan Denney Wendy Deters Remmel Dickinson Russell Dieterich Aviva Djiiji-Levy Marco Dkane Christine Dunbar Elaine Engel Federated Campaign Stewards Margaret Felix DeAnn Feltz Melody Felzien Tammy Ferguson Thomas Fields Dennis Filloon Lori Fineman Theresa Fink Lana Fischer Susie Fitton Annette Forseter Susan Gallant Irene Garcia-Benavides Amy Gardner Susan Gardstrom

Astrida Greco Sue and Barry Griebler Donna Grossman Michelle Gudauskas Marianne Gustafson Lucinda Hackett Shon Halacka Ellen Hansen Inge Hards Rebecca Harp Alyson Harrington Hawaii Pacific Area Lill Hockema Rita Howe Carol Hulick Mark Hunsinger Jason Ipock Laurie Jalenak Susan Johnson Megan Jones Elizabeth Kleber Caitlyn Kozelj Linda Krevda Roberta Krznarie Stephen Kwechin Amy Landis Matthew Larrabee Linda Larson Annie Lederfeind Sharon Leiderman Regina Lennon LaVern Loomis Michael Macione Beth Maczka Jane Madell Marjorie Magner Caroline Magnual Aileen Mason Mr. & Mrs. Linder McCoy Tessa McDermott Greg McGann Mercy Rehab Services, Inc. Sophia Miller Mark Mindlin Susan Mochinski Margaret Modica Donna Monahan Neil Morris Barbara Murphy Peter Murphy Jocelyn Nelson Alicia Newman Pauline Newton Yan Ni George Nofer Erik Nordlof Kimberly O'Donnell Teri Ouellette Todd Palker Theresa Pallarino Terry Palmer Alice Patton Renee Patton Harald Pels Ann Percival Jonathan Petromelis Philadelphia Area United Way Priscilla Pike Ann Powers Principal Combined Fund Organization

Julie Reichman Lina Reiss June Reynolds Justine Roberts Margaret Roberts Joi Rothschild Robert Saperstein Villarosa Sarusal Janet Scheeline Rosanne Schoen Carla Schumacher Ronda Sekela Deborah Shaffer Nancy Smelcer Joanna Smith Katia Soares Regina Soares SoCal Tri-County CFC Eileen Solla-Diaz Paul Sonier Ishmael Soto Frederick Spahr Jack Spear State Employees' Community Campaign Belle Steinberg Gary Stern Leslie Stone Patrick Stone Valerie Strickland SunTrust United Way Campaign Louise Sussman Andrew Svetly Julie Swanson Wendy Thomas Janet Tinkel Thuy Trinh United Way of New York City Luisa Valentin Susan Vanhoven Catherine Wadekamper Hadassah Waxman Charlotte Webb Steven Weigandt Marsha Weston Thais Williams Jacqueline Yoacham Andrea Zagarola Carla Zimmerman Kristin Zlogar

Tributes Dr. Dale Atkins LaFawn Biddle Taylor L. Billet Matthew Browne Dr. Wallace Bruce David James Davis Trenton Dickey Brian Donenberg Nan Ellen East Marian Ernst George Fellendorf Michele Flower David Frangiosa Kelly Halacka-Gilkey Dr. Donald Goldberg Kristina and Skye Graham Wendy Gutmann Trish Hagge

Andrew Hood Megan Horsley Jenny Ignacio Caroline Rose Jacoby Larry and Susan Jarret "Jeans Day" fundraiser Dr. Julibeth Jones Landon Robert Jones Meredith Knueve Joey Kulakowski Wendy Kupfer Ken Levinson Charlie, Betty & Stacey Lim Alice MacKay Madaline Daniel Merkle Reid T. Newman Nate & Bonnie Paterson Benjamin Purcel Tilak Ratnanather Susan & Alvin Schonfeld Lucile Shachtman Katia Soares Paul & Sarah Sommer St. Joseph Institute – Indianapolis Staff Michael Tecklenburg Sally Tennenbaum Kathleen S. Treni Tyson Vonderfecht Thomas Waldschmidt Matthew and Audrey Washuta Jeffrey G. Whipple Aidan Zagarola The AG Bell Staff The Brunell-Masuzzo Wedding The Munos Family The Rosenfeld Hanukah Celebration To children with hearing loss To all my students

Memorial Gifts Tom Allio, Sr. Joseph S. Ballard Martina Bechtel Helen H. Beebe Mabel Bell Melanie Bierna Grant Bitter Tyler Ralph Davis Katherine S. Graham Larry Jarret Hollie Jones Rita Martin Paul Oberkotter Bonnie Paterson Doreen Pollack J.B. Powell Lucile Shachtman

Our Mission: Advocating Independence Through Listening and Talking Our Goals: Advocacy Community Building Capacity Building Leadership and Management The following chart illustrates how the Association allocates its financial resources to support its mission and the goals of its strategic plan.

Allocation of Resources 2012 9%

11%

16%

14%

Publications

Financial Aid

Academy

Advocacy

General

Knowledge Center

Membership

Other Projects

Convention

Fundraising

Frequently Asked Questions About Auditory-Verbal Practice New from the AG Bell Bookstore! do you have questions about auditory-verbal therapy and education? Find the answers 101 frequently asked questions from more than 100 listening and spoken language specialists. this book will help you: • learn about the history, philosophy, principles and outcomes of auditory-verbal practice • gain an understanding of contemporary issues and current trends in field • Build strong parent-professional partnerships that foster the development of listening, spoken language and literacy • Find hope, support and encouragement

Available in print and e-book format for all major e-readers ListeningandSpokenLanguage.org/101FAQs

listeningandspokenlanguage.org

Advocacy in Action

Joining Forces to Advance Education and Public Policy Issues

G Bell ensures that the needs of children and adults who use listening and spoken language are addressed as public policy is shaped through participation in national coalitions representing consumers and professionals in the hearing health and education arenas and by raising awareness of listening and spoken language with congressional representatives and their staff. AG Bell was recently represented at agenda-setting meetings and public awareness events in the nation’s Capital and beyond.

Deaf and Hard of Hearing Consumer Action Network AG Bell recently participated in the annual retreat of the Deaf and Hard of Hearing Consumer Action Network (DHHCAN). The DHHCAN is a national coalition of organizations representing the interests of consumers who are deaf and hard of hearing on public policy and other issues related to their quality of life, affirming their right to consumer leadership, self-representation, and equal access to education, employ-

ment, community life, communication and technology. On Feb. 9, AG Bell’s Director of Communications and Marketing Susan Boswell, and Director of Development June Martin, joined representatives of 11 other organizations at the agenda-setting retreat. Expanded access to technology, hearing health advocacy efforts and issues of concern to seniors who are deaf and hard of hearing were the focus of presentations at a recent annual retreat. Efforts are underway to develop and implement next-generation 911 (NG 9-1-1) technology through computer or mobile applications that combine video, audio and text-based communication for greater ease of communication. Internetbased captioned telephone is another area of recent advocacy efforts in order to respond to concerns of the Federal Communications Commission (FCC) about how consumers are using this service. Issues of concern to individuals as they age with hearing loss include the need for seniors to access life alert systems, the cost of interpreters and other accommodations for communication access, and the need for profession-

als experienced in the mental health needs of individuals who are deaf and hard of hearing, particularly those who are older.

Clerc Center’s Meeting on National Priorities AG Bell recently participated in the Laurent Clerc National Deaf Education Center’s meeting to establish its national priorities. According to the Clerc Center’s website, its mission is “to improve the quality of education afforded to deaf and hard of hearing students from birth to age 21 throughout the United States.” On February 4th and 5th, 2013, AG Bell’s director of programs, Judy Harrison, joined over 20 other individuals from across the United States representing education, research, family services and state agencies to “develop a shared understanding of the challenges that, if addressed by the Clerc Center, will have a positive impact on the success of current and future generations of deaf and hard of hearing children”, as described in the Clerc Center’s invitation to participants. Based on that shared understanding, the Clerc Center would establish its national priorities for 2013 – 2018. Over the course of two days, the group was led by the Clerc Center’s staff to exchange ideas and ultimately reach consensus on recommendations which ultimately focused on the need for qualified professionals to serve the needs of students who are deaf and hard of hearing.

Council on Education of the Deaf AG Bell is a founding member of the Council on Education of the Deaf (CED) and participates regularly on its board of directors. Currently, AG Bell is represented by Donald M. Goldberg, Ph.D., CCC-SLP/A, FAAA, LSLS Cert. AVT,

VOLTA VOICES • M AY / JUNE 201 3

AG Bell was recently represented at agenda-setting meetings and public awareness events in the nation’s Capital and beyond. president of the association, and Judy Harrison, director of programs, both of whom attended the recent CED board meeting held prior to the Association of College Educators – Deaf and Hard of Hearing (ACE-DHH) annual conference. According to the CED website, its mission is to promote excellence in educating students who are deaf and hard of hearing by establishing, promoting and monitoring teacher education standards embodying best practices, reflecting current research, and embracing diversity and multiculturalism. The board discussed CED’s accreditation of college and university teacher training programs, its individual teacher certification, and its updated website that should improve accessibility to information for those interested in certification and accreditation.

Following the CED board meeting, AG Bell exhibited and attended the ACE-DHH annual conference. Attendees were presented with information about the Listening and Spoken Language Knowledge Center, AG Bell’s online Parent Advocacy Training Course, the 2013 Listening and Spoken Language Symposium, the LSLS Certification, and many other resources provided by AG Bell.

Hearing Health Forum and Reception AG Bell participated in the Hearing Health Forum and Reception on Capitol Hill at the Rayburn House Office Building on Feb. 28, 2013 as part of a coalition of 16 organizations that make up the Friends of the Congressional Hearing Health Caucus. AG Bell was

Learn & earn

joined by Rachel Dubin, a member of the AG Bell Public Affairs Council, who represents adults who are deaf and hard of hearing. Honorary co-hosts included Rep. Carolyn McCarthy of New York and Rep. Tom Latham of Iowa, who presented a “HearStrong Champion Certificate” to Elisa Cimento, a former AG Bell LOFT participant and an intern for the Hearing Industries Association for her outstanding dedication to hearing health issues. The forum was designed to raise awareness of hearing loss and hearing health issues among members of congress and their staff. The event featured hearing screenings by a hearing health professional and earbud noise testing with “Bud,” a sound-level mannequin who can help listeners determine whether their volume is set too high for safety on a personal music player. Participants also had the opportunity to talk to hearing professionals and to learn about listening and spoken language and AG Bell resources on the Listening and Spoken Language Knowledge Center.

The Volta Review is pleased to offer readers continuing education units (CEUs) for self-study of the journal. Complete the assessment and earn up to 2.0 CEUs per assessment toward certification or recertification with the AG Bell Academy for Listening and Spoken Language. You can earn CEUs at your own time and pace for each issue – just by reading and completing an assessment!

The Volta Review CEU program offers: • No waiting – receive instant notification of grade and auto-generated certificate • Learn the correct answer as you take the assessment • Access to a PDF of the journal text • Ability to earn CEUs at your own time and pace

The Volta Review CeU Opportunity RegisteR to take the assessment today Online assessments are provided through AG Bell’s online learning community. Visit ListeningandspokenLanguage.org/tVRCeU to take advantage of this program today.

VOLTA VOICES • MAY/JUNE 201 3

tips for parents

I Am a Parent First By Andrea Samuel, M.S., CCC-SLP

Matt Samuel

am a speech-language pathologist and I have a child who is hard of hearing. Close friends from near and far, on hearing the news, would say in their genuine attempts to comfort, “Amelia is so blessed to have a mother like you!” Despite what people think, I never worked with children who are deaf and hard of hearing. On leaving school over a decade ago, I knew a little bit about everything I needed to know about language development and communication disorders but not a whole lot about specific things. And habilitation of children with hearing loss is a very specific thing. I gave birth to Amelia, our second beautiful daughter, in March 2011 on St. Patrick’s Day. I had moved back to the U.S. with my newly immigrated English husband after having spent nearly five years in Ireland. Two days later, Amelia received her newborn hearing screening. The speechlanguage pathologist in me was fascinated and I had been looking forward to witnessing this procedure which we did not have for her older sister who was born only 20 months earlier in Dublin, Ireland. Amelia did not pass. We were to come back in two weeks for a rescreen. Amelia failed her screenings two more times and we completed an auditory brainstem response (ABR) test. The diagnosis: moderate to severe sensorineural hearing loss in both ears. I remember standing outside the clinic waiting for the elevator and looking into my husband’s eyes and telling him, “You know, this means that Amelia will need hearing aids for the rest of her life.” We both became a blur to each other as our eyes filled with tears. That was all my knowledge could offer. We wanted Amelia to have all the opportunities that we had. I wanted to sing all the songs I had learned as a child to her, just as I had with her older sister. We wanted her to hear the birdsongs of early spring, the waves of the ocean hit-

Amelia on her 2nd birthday playing with her new toys with her big sister, Julia.

ting the shores, and at least for me, the sounds of a choir that makes one’s spine tingle. Her risk of not developing speech was almost a secondary fear at first. Amelia turned 2 years old on St. Patrick’s Day. She loves to listen and shows an interest in the sounds around her. She loves having books read to her. She loves dancing to music! In fact, when a song ends in the car, she asks for the song again! She is speaking in short phrases and we understand the majority of what she says. She is even starting to tattle on her big sister! The following are things we think made the difference for Amelia’s success and we would like to share with other parents like us. Give your child as much access to sound as early as possible and be persistent and creative. Amelia was fitted with hearing aids and our only goal, if any, was to keep them in her ears all her waking hours. Next, we needed to talk and sing to her as we would with her sister with typical hearing. Not so easy at first and actually not so easy for at least that first year. Amelia would be quiet and alert when we spoke to her with her new hearing aids on. That was the only reinforcement we

had. My natural urge to talk and sing to her was not really there, or perhaps not as forthcoming as I knew it could be. An emotional block perhaps. Once she found her hands and discovered their capabilities it seemed she was looking for ways to pull the hearing aids out. We were saved by having several Hannah Anderson bonnets. These, more than anything else, kept the hearing aids in. Then, when Amelia was about 8 or 9 months old, the reward revealed itself! Amelia began to babble! At about 14 months, she began to say her first words. She was good at localizing sounds at home but still needed extra help doing so with less familiar sounds and in less familiar environments. The FM system can be overused. Allow your child to discover and differentiate sounds on her own. I had been using the FM system quite a bit, mainly because I needed her to hear me under her heavy winter hats when we were out and about during the colder months. The speech-language pathologist in me also wanted to ensure she had clear access to all speech sounds in all environments. I sometimes wonder if all those hours of its

VOLTA VOICES • M AY / JUNE 201 3

use precluded her from fully detecting and localizing environmental sounds. I cut back on using the FM system at around 16 months and soon after that, Amelia’s sound detection and localization improved. She started mimicking my listening cues as she would place her finger on one of her ears when she heard a sound, be it an airplane, a familiar voice, a song, an alarm, a dog. It was then that she coincidently began putting her first words together. Be discerning when receiving advice and educate yourself. I received lots of advice; some very useful and some outdated. One friend and colleague told me how important it would be for me to learn cued speech because Amelia wouldn’t be able to accomplish everything with her hearing aids. I also attended a parent support group, and some mothers there were using both signs and words with their older toddlers. I was confused. I dived headlong into as much of the current literature about the developing auditory brain as was at my disposal. I knew that these early years were critical in terms of allowing Amelia to establish a solid foundation of both auditory and verbal skills. I felt that signing would have its rightful place if Amelia decided later on that it would benefit her. Now, in these first months and years it would be critical to act on her developing auditory system and to not detract from it. Trust your intuition when deciding what is best for your child; then, find the professionals and the community to support your decision. I wanted my child to be able to function in the mainstream but, at times, I didn’t feel reassured. Fortunately, one of my colleagues provided me with useful resources. The first book she lent me was by Elizabeth Cole & Carol Flexer, Children with Hearing Loss: Developing Listening and Talking, Birth to Six. That book helped set me and Matt, my husband, on a clearly chartered course of how we could help Amelia. It gave compelling information that allowed us to understand how we could raise a child who could hear and speak and how to optimize her listening with her technology. Matt confesses to me now that in spite of his steadfast effort, it took him quite some time to fully grasp the concept that Amelia needed to hear speech in order to

VOLTA VOICES • MAY/JUNE 201 3

learn speech. Also of great benefit was 50 FAQs About Auditory-Verbal Therapy by Warren Estabrooks (AG Bell has released the expanded and revised 101 FAQs About Auditory-Verbal Practice). Further, we had an audiologist who was a big proponent of listening and spoken language and she directed us to AG Bell. This led to us connecting with an auditory-verbal clinic where I found providers who were themselves parents of children with hearing loss, and whose children were successfully mainstreamed. We now access their expertise and advice monthly right from our home through telepractice with a certified Listening and Spoken Language (LSLSTM) professional. Take a holistic approach. Everyone that provides care to your child can be helpful. I want to mention that the communication intervention has been just one piece in helping Amelia. Fortunately, we found ourselves with excellent physicians; both the pediatrician and the ENT. Our pediatrician played a pivotal role in getting me out of denial and acting quickly after two failed screens. The ENT recommended a CT brain scan and genetic testing, the latter of which was extremely valuable. We learned that Amelia has one of the more common forms of genetic hearing loss due to Connexin 26 or a variation in the GJB2 gene. My husband and I were both carriers of this mutation and passed it on to Amelia. We found this information comforting because it allowed us to close the door on the big question of why she had hearing loss, which had been tormenting us since we received the diagnosis. While there is no guarantee that genetic testing gives all families the answers they seek, it was a very healing and powerful intervention for us. It allowed us to move from feeling helpless to a sense of acceptance. As I reflect on the first two years of Amelia’s life, I am parent first and a professional second. Regardless of my background or prior knowledge of how the young brain learns language, nothing could have prepared me for this journey that began with joy, then surprise and heartbreak, sadness and fear, and once again evolved full circle to optimism and joy. I am Amelia’s mom and the true irony of it all is that I am the one who is blessed to have a daughter like her.

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Hear Our Voices

LOFT-y Connections: Accepting My Deafness and Getting an Internship By Elisa Cimento

Matthew Jones, Hearing Industries Association

ast June, I attended AG Bell’s program Leadership Opportunities for Teens (LOFT), which changed the way I think about my hearing loss and led to my coming of age in ways that I am still realizing. When I got on the plane to head back home after the program was over, I had three major take-aways: 1. I had a cell phone with 20 new numbers of people who are deaf and hard of hearing when previously I had known only one other person “like me.” 2. There was a flash-drive in the mail that held more pictures than I have taken in a lifetime, and I was only gone for four days. 3. It suddenly seemed unthinkable that I ever lived my life being unable to accept my deafness. Everything I do not like about my deafness does not go away, of course, but suddenly the “problems” are easier and not as scary as before. I no longer feel ashamed of who I am; instead, those who treat me as less than I am are now the problem, not me. Fast forward six months later and I am immersed in finals during my first semester of college. My friends at other colleges are either ignoring me, or being ignored by me, because they are either pursuing grades or because they started winter break earlier. High school friends have been forgotten because the old, terrifying finals in AP classes have been replaced by the stress of 10-page papers. My college friends are either having nervous breakdowns or getting close to one after a week of minimal sleep. Coffee is now a

Elisa Cimento receives her HearStrong Champion Certificate and celebrates with Ed Keller from EarQ.

necessity, not a nice drink. In the midst of this time period I receive an email. It is a friend from LOFT who heard of an internship for someone interested in hearing health science. Was I? When I started college as a young, naïve freshman, I was unaware of many things. One of my biggest surprises was how many of my fellow classmates with typical hearing were interested in speech and hearing sciences. These courses were very popular and hard to get into. At the same time,

four months after LOFT, I was beginning to feel lonely and weary of being “different” once again. Texting was the only interaction I had with my LOFT friends. It felt weird being out in the hearing world without much exposure to the world of deafness and hearing loss. I missed being around people who knew what I was talking about when my tinnitus started up again. I missed personally knowing people who understood how hearing aids and speechreading work. I missed learning

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about and understanding deafness, which is something that I had grown up with, but knew so little about before. Yes, I was interested in the job! So I applied for, and got a position as an intern for the Hearing Industries Association. The organization has been advocating for the passage of the Hearing Aid Tax Credit. If enacted, it would provide a $500 tax credit per hearing aid available once every five years. Specifically, I was hired to help plan and prepare for the association’s combined annual meeting and “Hearing on the Hill” event, their three-day conference which raises awareness about hearing loss. My job was a mixture of a typical intern’s experience, and the chance to learn about the political side of hearing health, with which I previously had very little experience. I did make a lot of copies, call people, find a lot of addresses, and put together packets. All of these activities gave me good office experience. I was also immersed in a policy environment, which made me aware of a

VOLTA VOICES • MAY/JUNE 201 3

number of issues. For example, I discovered that currently 20 states in the United States, including Oregon, require insurance coverage of hearing aids for children. Being from California, I have apparently lived one state too far south for the first 18 years of my life, as California does not currently require coverage for hearing aids. Furthermore, not enough people take advantage of medical deductibles on their Schedule A tax forms, which allow deductions for medical expenses that exceed 7.5 percent of adjusted gross income. Finally, making your voice heard is so important: just because a senator or a representative co-sponsored a particular bill, such as the Hearing Aid Tax Credit, in the previous Congress does not mean that he or she will automatically do so again in the new Congress. In fact, it is important that the people who care about the bill return to demonstrate that the issue is still important to them, as we did during “Hearing on the Hill.” I was honored at the end of the conference to receive an award from

the Hearing Industries Association for “Outstanding Dedication and Service,” which was a wonderful and surprising acknowledgement because I felt throughout that I was only doing my job. Additionally, I was named a HearStrong Champion and received a medal for being an advocate for the positive acceptance of deafness and encouraging those who have not yet done so to accept their deafness. In retrospect, LOFT gave me a group of friends and a support group. Through my internship, I was able to acquire more information about a topic that will continue to have an impact on me for the rest of my life. Both of these experiences have educated and empowered me to continue to strive for success. I have been asked to stay on after the annual meeting and the “Hearing on the Hill” event, and will get a chance to help prepare for and attend meetings with congressional staff. I am excited to see where in my learning experience I am taken next.

Directory of Services

Directory of Services n California Auditory-Verbal Services, 10623 Emerson

Bend, Tustin, CA 92782. 714-573-2143 (voice) KarenatAVS@aol.com (email). Karen Rothwell-Vivian, M.S.Ed., M.A., CCC-A, LSLS Certified AuditoryVerbal Therapist (LSLS Cert.AVT). Auditory-Verbal Therapy and audiological consultation for children with hearing loss from infancy. Expertise with hearing aids, cochlear implants, FM systems, and mainstreaming support. Auditory Rehabilitation both pre-lingual and post-lingual hearing loss for children and adults.

Listen and Learn, 4340 Stevens Creek Blvd., Suite 107, San Jose, CA 95129 • 408-345-4949 • Marsha A. Haines, M.A., CED, Cert. AVT, and Sandra Hamaguchi Hocker, M.A., CED • Auditoryverbal therapy for the child and family from infancy. Services also include aural habilitation for older students and adults with cochlear implants. Extensive experience and expertise with cochlear implants, single and bilateral. Mainstream support services, school consultation and assessment for children in their neighborhood school. California NPA certified.

Children’s Choice for Hearing and Talking, CCHAT Center – Sacramento, 11100 Coloma Road, Rancho Cordova, Ca 95670 • 916-361-7290 (voice). Laura Turner, Principal. An auditory/oral day school educating children and their families from birth through early elementary grades. Other programs include adult cochlear implant support, parent-infant program, on-site audiological services and mainstreaming support services. The school is staffed with credentialed teachers, licensed speechlanguage pathologists and a licensed audiologist.

No Limits Performing Arts Academy and Educational Center, 9801 Washington Boulevard, 2nd Fl, Culver City, CA 90232 – 310.280.0878, 800.948.7712 • www.kidswithnolimits. org. • Provides free speech, language, literacy and support services to dhh children and their families between the ages of 3 and 18 through its No Limits Educational Center. Additionally, No Limits offers a national performing arts program for schools and the community that builds the self confidence and communication skills of children with a hearing loss.

Echo Center/Echo Horizon School, 3430 McManus Avenue, Culver City, CA 90232 • 310-838-2442 (voice) • 310-838-0479 (fax) • 310-2027201 (tty) • vishida@echohorizon.org (email) • www. echohorizon.org (website) • Vicki Ishida, Echo Center Director. Private elementary school incorporating an auditory/oral mainstream program for students who are deaf or hard of hearing. Daily support provided by credentialed DHH teachers in speech, language, auditory skills and academic follow-up.

Training and Advocacy Group (TAG) for Deaf & Hard of Hearing Children and Teens, Leah Ilan, Executive Director • 11693 San Vicente Blvd. #559, Los Angeles, CA 90049 • 310-339-7678 • tagkids@aol.com • www.tagkids.org. TAG provides exciting social opportunities through community service, field trips, weekly meetings, college prep and pre-employment workshops, guest speakers and parent-only workshops. site in the community. Group meetings and events offered to oral D/HoH children in 5th grade through high school seniors.

HEAR Center, 301 East Del Mar Blvd., Pasadena, CA 91101 • 626-796-2016 (voice) • 626-796-2320 (fax) • Specializing in audiological services for all ages. Auditory-Verbal individual therapy, birth to 21 years. HEAR to Talk, 547 North June Street, Los Angeles, CA 90004 • 323-464-3040 (voice) • Sylvia@hear2talk.com (e-mail) • www.hear2talk. com • Sylvia Rotfleisch, M.Sc.A., CED, CCC, Certified Auditory-Verbal Therapist®, LSLS Cert. AVT, Licensed Audiologist, California NPA Certified. Trained by Dr. Ling. Extensive expertise with cochlear implants and hearing aids. John Tracy Clinic, 806 West Adams Boulevard, Los Angeles, CA 90007 · 213-748-5481 (voice) · 800-522-4582 · PALS@JTC.org · www. jtc.org & www.youtube.com/johntracyclinic. Early detection, school readiness and parent empowerment since 1942. Worldwide Parent Distance Education and onsite comprehensive audiological, counseling and educational services for families with children ages birth-5 years old. Intensive Summer Sessions (children ages 2-5 and parents), with sibling program. Online and on-campus options for an accredited Master’s and Credential in Deaf Education.

n Colorado Bill Daniels Center for Children’s Hearing, Children’s Hospital Colorado, Department of Audiology, Speech Pathology and Learning Services, 13123 East 16th Avenue, B030 Aurora, CO 80045 • www.childrenscolorado.org (website) • 720-777-6531 (voice) • 720-777-6886 (TTY) • BillDanielsCenter@ childrenscolorado.org (email). We provide comprehensive audiology, speech-language and pediatric otolaryngology services for children who are deaf or hard of hearing (ages birth through 21 years). Our pediatric team specializes in family-centered care and includes pediatric otolaryngologists, audiologists, speech-language pathologists, and a deaf educator, family consultant and clinical social worker. Therapy services include individual, group and parent support designed to meet each family’s goals for their child’s development. We also provide advanced technology hearing aid fitting and cochlear implant services.

The Alexander Graham Bell Association for the Deaf and Hard of Hearing is not responsible for verifying the credentials of the service providers below. Listings do not constitute endorsements of establishments or individuals, nor do they guarantee quality.

Rosie’s Ranch: Ride! Listen! Speak! 303-257-5943 or 720-851-0927 • www.rosiesranch.com • RosiesRanch@comcast.net • Our mission: To provide a family centered atmosphere where children with deafness or oral language challenges will expand their listening, verbal and reading skills by engaging in activities with horses, under the guidance of a highly trained and qualified staff. Our programs: Mom and Tot: A 90-minute parent and tot group pony activity; ages 1-5. Pony Camp: Daily riding and camp activities; age 6-13. Saturday Riding Club: For riders of all skill levels; ages 6-16. Out of state families welcome to experience ranch life; accommodations will be arranged!

n Connecticut CREC Soundbridge, 123 Progress Drive,

Wethersfield, CT 06109 • 860- 529-4260 (voice/ TTY) • 860-257-8500 (fax) • www.crec.org/soundbridge (website). Dr. Elizabeth B. Cole, Program Director. Comprehensive audiological and instructional services, birth through post-secondary, public school settings. Focus on providing cutting-edge technology for optimal auditory access and listening in educational settings and at home, development of spoken language, development of self advocacy – all to support each individual’s realization of social, academic and vocational potential. Birth to Three, auditoryverbal therapy, integrated preschool, intensive day program, direct educational and consulting services in schools, educational audiology support services in all settings, cochlear implant mapping and habilitation, diagnostic assessments, and summer programs.

New England Center for Hearing Rehabilitation (NECHEAR), 354 Hartford Turnpike, Hampton, CT 06247 • 860-455-1404 (voice) • 860-455-1396 (fax) • Diane Brackett. Serving infants, children and adults with all degrees of hearing loss. Speech, language, listening evaluation for children using hearing aids and cochlear implants. Auditory-Verbal therapy; Cochlear implant candidacy evaluation, pre- and post-rehabilitation, and creative individualized mapping. Post-implant rehabilitation for adults with cochlear implants, specializing in prelingual onset. Mainstream school support, including onsite consultation with educational team, rehabilitation planning and classroom observation. Comprehensive audiological evaluation, amplification validation and classroom listening system assessment.

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Directory of Services n Florida Clarke Schools for Hearing and Speech/Jacksonville, 9803 Old St.

Augustine Road, Suite 7, Jacksonville, FL 32257 • 904-880-9001(voice/relay). info@clarkeschools.org • www.clarkeschools.org. Alisa Demico, MS, CCC-SLP, LSLS Cert AVT, and Cynthia Robinson, M.Ed., CED, LSLS Cert. AVEd, Co-Directors. A member of the Options School network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Services include early intervention, toddler, preschool, pre-K, kindergarten, parent support, cochlear implant habilitation, and mainstream support. Summer Listening and Spoken language Program provides additional spoken language therapy for toddler and preschool-aged children. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

University of Miami Debbie School, Auditory Oral Education Program, 1601 Northwest 12th Avenue, Miami, Florida 33136 • 305-243-6961 (voice) • Kathleen C. Vergara, Director, Debbie Institute (kvergara@med.miami.edu) and Lynn W. Miskiel, Director of Ancillary Services (lmiskiel@ med.miami.edu). Our auditory-oral education program provides early intervention and primary education services in a nurturing, inclusive listening and spoken language environment. Classrooms include early preschool, preschool, kindergarten and primary. Services include early intervention, family education, individualized small group instruction, audiology and speech-language pathology. Staff consists of credentialed teachers, a credentialed service coordinator, licensed therapists and a licensed audiologist.

n Georgia Atlanta Speech School – Katherine Hamm Center, 3160 Northside Parkway, NW

Atlanta, GA 30327 • 404-233-5332 ext. 3119 (voice/ TTY) • 404-266-2175 (fax) • scarr@atlspsch.org (email) • www.atlantaspeechschool.org (website). A Listening and Spoken Language program serving children who are deaf or hard of hearing from infancy to early elementary school age. Children receive language-rich lessons and highly individualized literacy instruction in a nurturing environment. Teachers and staff work closely with parents to instill the knowledge and confidence children need to reach their full potential. Early intervention programs, audiological support services, auditoryverbal therapy, mainstreaming opportunities and independent education evaluations. Established in 1938.

Auditory-Verbal Center, Inc – Atlanta, 1901 Century Blvd. Suite 20, Atlanta Georgia 30345 • (voice) 404-633-8911 • (fax) 404-633-6403 • (email) listen@avchears.org • (website) www.avchears.org. Auditory-Verbal Center – Macon, 2720 Sheraton Drive, Suite D-140, Macon, Georgia 31204 • (voice) 478-741-0019 • (fax) 478-742-1308 • (email) listen@avchears.org • (website) www.avchears.org. A comprehensive auditory-verbal program for children who are deaf or hard of hearing and their families. Also provide audiological services for birth to geriatric. Provide adult cochlear implant rehabilitation.

VOLTA VOICES • MAY/JUNE 201 3

n Illinois Child’s Voice School, 180 Hansen Court,

Wood Dale, IL 60191 • (630) 595-8200 (voice) • (630) 595-8282 (fax) • info@childsvoice.org (email) • www.childsvoice.org (website). Michele Wilkins, Ed.D., LSLS Cert. AVEd., Executive Director. A Listening and Spoken Language program for children birth to age 8. Cochlear implant (re) habilitation, audiology services and mainstream support services provided. Early intervention for birth to age three with parent-infant and toddler classes and home based services offered in Wood Dale and Chicago areas. Parent Support/Education classes provided. Child’s Voice is a Certified Moog Program.

The University of Chicago, Comer Children’s Hospital Pediatric Hearing Loss and Cochlear Implant Center, 5841 S. Maryland Avenue, DCAM 4H, Chicago, IL 60637 • 773-702-8182. Program Director, Sally Tannenbaum, M.Ed., CED, LSLS Cert. AVT, stannenbaum@surgery.bsd.uchicago.edu. Dr. Dana Suskind, dsuskind@surgery.bsd.uchicago.edu. Website: www.uchicagokidshospital.org/cochlear. The center provides full medical and audiological services for infants, children and adults. Comprehensive services for children with hearing loss and their families are provided from time of diagnosis through schools years. Services include otolaryngology, audiology services including cochlear implants and loaner hearing aids, and listen and spoken language therapy. Mentoring in Listening and Spoken Language, Auditory-Verbal therapy is available for professionals. In addition, the Center is actively involved in research projects including developing an evidenced-based, listening and spoken language curriculum called Project ASPIRE.

n Indiana St. Joseph Institute for the Deaf – Indianapolis. 9192 Waldemar Road,

Indianapolis, IN 46268 • (317) 471-8560 (voice) • (317) 471-8627 (fax) • www.sjid.org; touellette@sjid. org (email) • Teri Ouellette, M.S. Ed., LSLS Cert AVEd, Director. St. Joseph Institute for the Deaf – Indianapolis, a campus of the St. Joseph Institute system, serves children with hearing loss, birth to age six. Listening and Spoken Language programs include early intervention, toddler and preschool classes, cochlear implant rehabilitation, mainstream therapy and consultation and daily speech therapy. Challenging speech, academic programs and personal development are offered in a nurturing environment. (See Missouri for other campus information)

n Maryland The Hearing and Speech Agency’s Auditory/Oral Program: Little Ears, Big Voices, 5900 Metro Drive, Baltimore, MD 21215 • (voice) 410-318-6780 • (relay) 711 • (fax) 410-318-6759 • Email: hasa@hasa.org • Website: www.hasa.org • Jill Berie, Educational Director; Olga Polites, Clinical Director; Erin Medley, Teacher of the Deaf. Auditory/Oral education and therapy program for infants and young children who are deaf or hard of hearing. Early intervention services are available for children birth to age 3 and a preschool program for children ages 3 through 5. Cheerful, spacious, state-of-the-art classrooms located in Gateway School are approved by the Maryland State Department of Education. Services include onsite audiology, speech-language therapy, family education and support. Applications are accepted year-round. Financial aid available.

n Massachusetts Clarke Schools for Hearing and Speech/Boston, 1 Whitman Road, Canton,

MA 02021 • 781-821-3499 (voice) • 781-821-3904 (tty) • info@clarkeschools.org • www.clarkeschools. org. Barbara Hecht, Ph.D., Director. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Services include early intervention, preschool, kindergarten, speech and language services, parent support, cochlear implant habilitation, and an extensive mainstream services program (itinerant and consulting). Children and families come to our campus from throughout Eastern and Central Massachusetts, Cape Cod, Rhode Island, Maine and New Hampshire for services. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

Clarke Schools for Hearing and Speech/Northampton, 47 Round Hill Road, Northampton, MA 01060 • 413-584-3450 (voice/tty). info@clarkeschools.org • www.clarkeschools.org. Bill Corwin, President. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Services include early intervention, preschool, day school through 8th grade, cochlear implant assessment, summer programs, mainstream services (itinerant and consulting), evaluations for infants through high school students, audiological services, and a graduate degree program in teacher education. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

Directory of Services n Minnesota Northeast Metro #916 Auditory/Oral Program, 1111 S. Holcombe Street, Stillwater MN

55082 • 651-351-4036 • auditory.oral@nemetro.k12. mn.us (email). The purpose of Northeast Metro 916’s Auditory/Oral Program is to provide a listening and spoken language education to children who are deaf or hard of hearing. Services strive to instill and develop receptive (listening) and expressive (speaking) English language skills within each student. Well-trained specialists carry the principles of this program forward using supportive, necessary and recognized curriculum. The program’s philosophy is that children who are deaf or hard of hearing can learn successfully within a typical classroom environment with peers who have typical hearing. This can be achieved when they are identified at an early age, receive appropriate amplification, and participate in an spoken language-specific early intervention program. Referrals are through the local school district in which the family lives.

n Mississippi DuBard School for Language Disorders, The University of Southern Mississippi,

118 College Drive #5215, Hattiesburg, MS 39406-0001 • 601-266-5223 (voice) • dubard@usm.edu (email) • www.usm.edu/dubard • Maureen K. Martin, Ph.D., CCC-SLP, CED, CALT, QI, Director. The DuBard School for Language Disorders is a clinical division of the Department of Speech and Hearing Sciences at The University of Southern Mississippi. The school serves children from birth to age 13 in its state-of-theart facility. Working collaboratively with 20 public school districts, the school specializes in coexisting language disorders, learning disabilities/dyslexia and speech disorders, such as apraxia, through its nongraded, 11-month program. The DuBard Association Method®, an expanded and refined version of The Association Method, is the basis of the curriculum. Comprehensive evaluations, individual therapy, audiological services and professional development programs also are available. AA/EOE/ADAI.

Magnolia Speech School, Inc. 733 Flag Chapel Road, Jackson, MS 39209 – 601-9225530 (voice), 601-922-5534 (fax) – anne.sullivan@ magnoliaspeechschool.org –Anne Sullivan, M.Ed. Executive Director. Magnolia Speech School serves children with hearing loss and/or severe speech and language disorders. Listening and Spoken Language instruction/therapy is offered to students 0 to 12 in a home-based early intervention program (free of charge), in classroom settings and in the Hackett Bower Clinic (full educational audiological services, speech pathology and occupational therapy). Assessments and outpatient therapy are also offered to the community through the Clinic.

n Missouri CID – Central Institute for the Deaf, 825 S. Taylor Avenue, St. Louis, MO 63110 314977-0132 (voice) • 314-977-0037 (tty) • lberkowitz@ cid.edu (email) • www.cid.edu (website) Lynda Berkowitz/Barb Lanfer, co-principals. Child- and family-friendly learning environment for children birth-12; exciting adapted curriculum incorporating mainstream content; Family Center for infants and toddlers; expert mainstream preparation in the CID pre-k and primary programs; workshops and educational tools for professionals; close affiliation with Washington University deaf education and audiology graduate programs.

The Moog Center for Deaf Education, 12300 South Forty Drive, St. Louis, MO 63141 • 314-692-7172 (voice) • 314-692-8544 (fax) • www. moogcenter.org (website) • Betsy Moog Brooks, Executive Director, bbrooks@moogcenter.org. Services provided to children who are deaf and hard-of-hearing from birth to 9 years of age. Programs include the Family School (birth to 3), School (3-9 years), Audiology (including cochlear implant programming), mainstream services, educational evaluations, parent education and support groups, professional workshops, teacher education, and student teacher placements. The Moog Center for Deaf Education is a Certified Moog Program. St. Joseph Institute for the Deaf – St. Louis, 1809 Clarkson Road, Chesterfield, MO 63017 • (636) 532-3211 (voice/TYY) • www.sjid.org • An independent, Catholic school serving children with hearing loss birth through the eighth grade. Listening and Spoken Language programs include early intervention, toddler and preschool classes, K-8th grade, ihear internet therapy, audiology clinic, evaluations, mainstream consultancy, and summer school. Challenging speech, academic programs and personal development are offered in a supportive environment. ISACS accredited. Approved private agency of Missouri Department of Education and Illinois Department of Education. (See Indiana for other campus information)

n New Jersey Summit Speech School for the Hearing-Impaired Child, F.M. Kirby Center is an exclusively auditory-oral/auditory-verbal

school for deaf and hard of hearing children located at 705 Central Ave., New Providence, NJ 07974 • 908508-0011 (voice/TTY) • 908-508-0012 (fax) • info@ summitspeech.org (email) • www.summitspeech.org (website) • Pamela Paskowitz, Ph.D., CCCSLP, Executive Director. Programs include Early Intervention/Parent Infant (0-3 years), Preschool (3-5 years) and Itinerant Mainstream Support Services for children in their home districts. Speech and language, OT and PT and family support/family education services available. Pediatric audiological services are available for children birth-21 and educational audiology and consultation is available for school districts.

n New York Anne Kearney, M.S., LSLS Cert. AVT, CCC-SLP, 401 Littleworth Lane, Sea

Auditory/Oral School of New York, 3321 Avenue “M”, Brooklyn, NY 11234 • 718-5311800 (voice) • 718-421-5395 (fax) • info@auditoryoral. org (email). Pnina Bravmann, Program Director. An Auditory/Oral Early Intervention and Preschool Program serving children with hearing loss and their families. Programs include: Early Intervention (center-based and home-based), preschool, integrated preschool classes with children with normal hearing, multidisciplinary evaluations, parent support, auditory-verbal therapy (individual speech, language and listening therapy), complete audiological services, cochlear implant (re)habilitation, mainstreaming, ongoing support services following mainstreaming. Center for Hearing and Communication, 50 Broadway, 6th Floor, New York, NY 10004 • 917 305-7700 (voice) • 917-305-7888 (TTY) • 917-305-7999 (fax) • www. CHChearing.org (website). Florida Office: 2900 W. Cypress Creek Road, Suite 3, Ft. Lauderdale, FL 33309 • 954-601-1930 (Voice) • 954-601-1938 (TTY) • 954-601-1399 (Fax). A leading center for hearing and communication services for people of all ages who have a hearing loss as well as children with listening and learning challenges. Our acclaimed services for children include pediatric hearing evaluation and hearing aid fitting; auditory-oral therapy; and the evaluation and treatment of auditory processing disorder (APD). Comprehensive services for all ages include hearing evaluation; hearing aid evaluation, fitting and sales; cochlear implant training; communication therapy; assistive technology consultation; tinnitus treatment, emotional health and wellness; and Mobile Hearing Test Unit. Visit www.CHChearing. org to access our vast library of information about hearing loss and hearing conservation. Clarke Schools for Hearing and Speech/New York, 80 East End Avenue, New York, NY 10028 • 212-585-3500 (voice/tty). info@ clarkeschools.org • www.clarkeschools.org. Meredith Berger, Director. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Clarke’s New York campus is located on the Upper East Side of Manhattan and serves children age birth-5 years old from New York City and Westchester County. Clarke is an approved provider of early intervention evaluations and services, service coordination, and preschool classes (self-contained and integrated). There are typically little or no out of pocket expenses for families attending Clarke New York. Our expert staff includes teachers of the deaf/hard of hearing, speech language pathologists, audiologists, social workers/service coordinators and occupational and physical therapists. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia.

Cliff, Long Island, NY 11579 • 516-671-9057 (Voice) • Kearney@optonline.net. Family-centered auditory-verbal speech therapy for infants, children and adults with any level of hearing loss.

VOLTA VOICES • M AY / JUNE 201 3

Directory of Services Cleary School for the Deaf, 301 Smithtown Boulevard, Nesconset, NY 11767 • 631-588-0530 (voice) • www.clearyschool.org Kenneth Morseon, Superintendent. Offers Parent Infant/Toddler Program with services of Teacher of the Deaf, Speech Therapy & AV therapy. Transition Program into our Preschool Auditory-Oral Program. The primary focus of the Auditory-Oral Program is to develop students’ ability to “listen to learn” along with developing age appropriate speech, language, and academic skills, this program offers intensive speech therapy services with a goal to mainstream students when they become school age. Additional services offered include: Music, Art, Library, OT, PT and Parent Support. Mill Neck Manor School for the Deaf, 40 Frost Mill Road, Mill Neck, NY 11765 • (516) 922-4100 (voice). Mark R. Prowatzke Ph.D., Executive Director. State-supported school maintains Infant Toddler Program with focus on parent education and family support that includes listening and spoken language training by a speech therapist and TOD. Audiological services onsite. Auditory-verbal preschool and kindergarten (ages 3-6) program serves students who are deaf or hard of hearing alongside peers with typical hearing. Curriculum addresses NYS standards as it promotes language development through listening in a less restrictive setting. Full time TOD, along with music, art, library, audiological services and therapies that include individual and group speech, occupational, physical and family supports are available onsite. Certified Auditory Verbal Educators are on staff. Rochester School for the Deaf, 1545 St. Paul Street, Rochester, NY 14621 • 585-544-1240 (voice/TTY) • 866-283-8810 (videophone) • info@ RSDeaf.org • www.RSDeaf.org • Harold Mowl, Jr., Ph.D., Superintendent/CEO. Serving Western and Central New York State, Rochester School for the Deaf (RSD) is an inclusive, bilingual school where children who are deaf and hard of hearing and their families thrive. Established in 1876, RSD goes above and beyond all expectations to provide quality Pre-K through 12th grade academic programs, services and resources to ensure a satisfying and successful school experience for children with hearing loss. The Children’s Hearing Institute, 380 Second Avenue at 22nd Street, 9th floor, New York, NY 10010 • 646-438-7819 (voice). Educational Outreach Program – provides continuing education courses for professionals to maintain certification, with accreditation by American Speech-LanguageHearing Association (ASHA), American Academy of Audiology (AAA), and The AG Bell Academy for Listening and Spoken Language. Free parent and family programs for children with hearing loss. CHI’s mission is to achieve the best possible outcome for children with hearing loss by caring for their clinical needs, educating the professionals that work with them, and providing their parents with the pertinent information needed for in-home success.

VOLTA VOICES • MAY/JUNE 201 3

n North Carolina BEGINNINGS For Parents of Children Who Are Deaf or Hard of Hearing, Inc., 302 Jefferson Street, Suite 110, PO Box 17646, Raleigh, NC 27605, 919-715-4092 (voice) – 919-715-4093 (fax) – Raleigh@ncbegin.org (email). Joni Alberg, Executive Director. BEGINNINGS provides emotional support, unbiased information, and technical assistance to parents of children who are deaf or hard of hearing, deaf parents with hearing children, and professionals serving those families. BEGINNINGS assists parents of children from birth through age 21 by providing information and support that will empower them as informed decision makers, helping them access the services they need for their child, and promoting the importance of early intervention and other educational programs. BEGINNINGS believes that given accurate, objective information about hearing loss, parents can make sound decisions for their child about educational placement, communication methodology, and related service needs.

CASTLE – Center for Acquisition of Spoken Language Through Listening Enrichment, 5501 Fortunes Ridge Drive, Suite A, Chapel Hill, NC 27713 • 919-419-1428 (voice) • www.med.unc.edu/earandhearing/castle (website) • CASTLE is a part of the UNC Pediatric Cochlear Implant Team. Our mission is to provide a quality listening & spoken language program for children with hearing loss; empower parents as primary teachers and advocates; and train and coach specialists in listening and spoken language. We offer toddler classes, preschool language groups, auditory-verbal parent sessions and distance therapy through UNC REACH. A hands-on training program for hearing-related professionals/university students is also available.

n Oklahoma Hearts for Hearing, 3525 NW 56th Street,

Suite A-150, Oklahoma City, OK 73112 • 405-5484300 • 405-548-4350(Fax) • Comprehensive hearing health care for children and adults with an emphasis on listening and spoken language outcomes. Our family-centered team includes audiologists, LSLS Cert. AVTs, speech-language pathologists, physicians and educators working closely with families for optimal listening and spoken language outcomes. Services include newborn hearing testing, pediatric and adult audiological evaluations, hearing aid fittings, cochlear implant evaluations and mapping. Auditory-verbal therapy as well as cochlear implant habilitation is offered by Listening and Spoken Language Specialists (LSLS™), as well as an auditoryoral preschool, parent-toddler group and a summer enrichment program. Continuing education and consulting available. www.heartsforhearing.org.

n Pennsylvania Center for Childhood Communication at The Children’s Hospital of Philadelphia, 3405 Civic Center Boulevard,

Philadelphia 19104 • (800) 551-5480 (voice) • (215) 590-5641 (fax) • www.chop.edu/ccc (website). The CCC provides Audiology, Speech-Language and Cochlear Implant services and offers support through CATIPIHLER, an interdisciplinary program including mental health and educational services for children with hearing loss and their families from time of diagnosis through transition into school-aged services. In addition to serving families at our main campus in Philadelphia, satellite offices are located in Bucks County, Exton, King of Prussia, and Springfield, PA and in Voorhees, Mays Landing, and Princeton, NJ. Professional Preparation in Cochlear Implants (PPCI), a continuing education training program for teachers and speech-language pathologists, is also headquartered at the CCC.

Clarke Schools for Hearing and Speech/Pennsylvania, 455 South Roberts Road, Bryn Mawr, PA 19010 • 610-525-9600 (voice/ tty). info@clarkeschools.org • www.clarkeschools.org. Judith Sexton, MS, CED, LSLS Cert AVEd, Director. A member of the Option Schools network, Clarke Schools for Hearing and Speech provides children who are deaf and hard of hearing with the listening, learning and spoken language skills they need to succeed. Comprehensive listening and spoken language programs prepare students for success in mainstream schools. Locations in Bryn Mawr and Philadelphia. Services include early intervention, preschool, parent education, individual auditory speech and language services, cochlear implant habilitation for children and adults, audiological services, and mainstream services including itinerant teaching and consulting. Specially trained staff includes LSLS Cert. AVEd and LSL Cert. AVT professionals, teachers of the deaf, special educators, speech language pathologists and a staff audiologist. Clarke Schools for Hearing and Speech has locations in Boston, Bryn Mawr, Jacksonville, New York City, Northampton and Philadelphia. Delaware County Intermediate Unit # 25, Hearing and Language Programs, 200 Yale Avenue, Morton, PA 19070 • 610-938-9000, ext. 2277, 610-938-9886 (fax) • sdoyle@dciu.org • Program Highlights: A publicly funded program for children with hearing loss in local schools. Serving children from birth through 21 years of age. Teachers of the deaf provide resource room support and itinerant hearing therapy throughout Delaware County, PA. Services also include audiology, speech therapy, cochlear implant habilitation (which includes LSLS Cert. AVT and LSLS Cert. AVEd), psychology and social work.

Directory of Services DePaul School for Hearing and Speech, 6202 Alder Street, Pittsburgh, PA 15206 • 412-924-1012 (voice) • 412-924-1036 (fax) • www. speakmiracles.org (website) • ll@depaulinst.com (email) • Lillian Rountree Lippencott, Director of Outreach & Development. As western Pennsylvania’s only auditory-oral school for children who are deaf or hard of hearing, DePaul School provides Listening and Spoken Language (LSL) education to children in Pennsylvania, and from Ohio and West Virginia. A State Approved Private School, most programs are tuition-free to approved students. DePaul School provides early intervention services for children (birth to age 5); a center-based toddler program (ages 18-36 months); a preschool program (ages 3-5) and a comprehensive academic program grades K-8. DePaul School provides clinical services including audiology, Auditory-Verbal and speech therapy, cochlear implant MAPping and habilitation, physical and occupational therapy, mainstreaming support and parent education and support programs. Most children who participate in DePaul School’s early intervention programs gain the listening and spoken language skills needed to succeed and transition to their neighborhood schools by first grade.

n South Carolina The University of South Carolina Speech and Hearing Research Center, 1601 St. Julian Place, Columbia, SC, 29204 • (803) 777-2614 (voice) • (803) 253-4143 (fax) • Center Director: Danielle Varnedoe, daniell@mailbox. sc.edu. The center provides audiology services, speechlanguage therapy, adult aural (re)habilitation therapy, and Auditory-Verbal Therapy. Our audiology services include comprehensive diagnostic evaluations, hearing aid evaluations and services, and cochlear implant evaluations and programming. The University also provides a training program for AV therapy and cochlear implant management for professional/university students. Additional contacts for the AVT or CI programs include Wendy Potts, CI Program Coordinator (803-7772642), Melissa Hall (803-777-1698), Nikki HerrodBurrows (803-777-2669), Gina Crosby-Quinatoa (803) 777-2671, and Jamy Claire Archer (803-777-1734).

n Tennessee Memphis Oral School for the Deaf, 7901 Poplar Avenue, Germantown, TN 38138 • 901-758-2228 (voice) • 901-531-6735 (fax) • www.mosdkids.org (website) • tschwarz@mosdkids. org (email). Teresa Schwartz, Executive Director. Services: Family Training Program (birth-age 3), Auditory/Oral Day School (ages 2-6), Audiological Testing, Hearing Aid Programming, Cochlear Implant Mapping and Therapy, Aural (Re)Habilitation, Speech-Language Therapy, Mainstream Service.

Vanderbilt Bill Wilkerson Center National Center for Childhood Deafness and Family Communication, Medical Center East South Tower, 1215 21st Avenue South, Nashville, TN 37232-8718 • 615-936-5000 (voice) • 615-9361225 (fax) • nccdfc@vanderbilt.edu (email) • www. mc.vanderbilt.edu/VanderbiltBillWilkersonCenter (web). Tamala Bradham, Ph.D., Associate Director in Clinical Services. The NCCDFC Service Division is an auditory learning program serving children with hearing loss from birth through 21 years. Services include educational services at the Mama Lere Hearing School at Vanderbilt as well as audiological and speechlanguage pathology services. Specifically, services includes audiological evaluations, hearing aid services, cochlear implant evaluations and programming, speech, language, and listening therapy, educational assessments, parent-infant program, toddler program, all day preschool through kindergarten educational program, itinerant/academic tutoring services, parent support groups, and summer enrichment programs.

n Texas Callier Center for Communication Disorders/UT Dallas - Callier-Dallas Facility 1966 Inwood Road, Dallas, TX, 75235 • 214-905-3000 (voice) • 214-905-3012 (TDD) • Callier-Richardson Facility: 811 Synergy Park Blvd., Richardson, TX, 75080 • 972-883-3630 (voice) • 972-883-3605 (TDD) • cpiloto@utdallas. edu (e-mail) • www.callier.utdallas.edu (website). Nonprofit Organization, hearing evaluations, hearing aid dispensing, assistive devices, cochlear implant evaluations, psychology services, speechlanguage pathology services, child development program for children ages six weeks to five years.

The Center for Hearing and Speech, 3636 West Dallas, Houston, TX 77019 • 713-5233633 (voice) • 713-874-1173 (TTY) • 713-523-8399 (fax) - info@centerhearingandspeech.org (email) www.centerhearingandspeech.org (website) CHS serves children with hearing impairments from birth to 18 years. Services include: auditory/oral preschool; Audiology Clinic providing comprehensive hearing evaluations, diagnostic ABR, hearing aid and FM evaluations and fittings, cochlear implant evaluations and follow-up mapping; Speech-Language Pathology Clinic providing Parent-Infant therapy, Auditory-Verbal therapy, aural(re) habilitation; family support services. All services offered on sliding fee scale and many services offered in Spanish.

Sunshine Cottage School for Deaf Children, 603 E. Hildebrand Ave., San Antonio, TX 78212; 210/824-0579; fax 210/826-0436. Founded in 1947, Sunshine Cottage, a listening and spoken language school promoting early identification of hearing loss and subsequent intervention teaching children with hearing impairment (infants through high school.) State-of-the-art pediatric audiological services include hearing aid fitting, cochlear implant programming, assessment of children maintenance of campus soundfield and FM equipment. Programs include the Newborn Hearing Evaluation Center, ParentInfant Program, Hearing Aid Loaner and Scholarship Programs, Educational Programs (pre-school through fifth grade on campus and in mainstream settings), Habilitative Services, Speech Language Pathology, Counseling, and Assessment Services. Pre- and post-cochlear implant assessments and habilitation. Accredited by the Southern Association of Colleges and Schools Council on Accreditation and School Improvement, OPTIONschools International, and is a Texas Education Agency approved non-public school. For more information visit www.sunshinecottage.org

n Utah Sound Beginnings at Utah State University, 1000 Old Main Hill, Logan, UT

84322-1000 • 435-797-9235 (voice) • 435-7977519 (fax) • www.soundbeginnings.usu.edu • stacy. wentz@usu.edu (email) • Stacy Wentz, MS, Sound Beginnings Program Coordinator • Kristina.blasier@ usu.edu (email) • Kristina Blaiser, Ph.D., CCCSLP, Listening and Spoken Language Graduate Program. A comprehensive listening and spoken language educational program serving children with hearing loss and their families from birth through age five; early intervention services include home- and center-based services, parent training, toddler group, pediatric audiology, tele-intervention and individual therapy for children in mainstream settings. The preschool, housed in an innovative lab school, provides classes and research opportunities focused on the development of listening and spoken language for deaf/hard-of-hearing children aged three through five, parent training, and mainstreaming opportunities. The Department of Communicative Disorders and Deaf Education offers the interdisciplinary Listening and Spoken Language graduate training program in Speech-Language Pathology, Audiology, and Deaf Education that emphasizes listening and spoken language for young children with hearing loss. Sound Beginnings is a partner program of the Utah School for the Deaf and Blind.

Utah Schools for the Deaf and the Blind (USDB), 742 Harrison Boulevard, Ogden UT 84404 - 801-629-4712 (voice) 801-629-4701 (TTY) - www.udsb.org (website). USDB is a state funded program for children with hearing loss (birth through high school) serving students in various settings including local district classes and direct educational and consulting services throughout the state. USDB language and communication options include Listening and Spoken Language. USDB has a comprehensive hearing healthcare program which includes an emphasis on hearing technology for optimal auditory access, pediatric audiological evaluations, and cochlear implant management. Services also include Early Intervention, full-day preschool and Kindergarten, intensive day programs, and related services including speech/language pathology and aural habilitation. VOLTA VOICES • M AY / JUNE 201 3

Directory of Services n Wisconsin Center for Communication, Hearing & Deafness, 10243 W. National Avenue, West

List of Advertisers

Allis, WI 53227 • 414-604-2200(Voice) • 414-6047200 (Fax) • www.cdhh.org (Website). Amy Peters Lalios, M.A., CCC-A, LSLS Cert. AVT as well as five LSLS Cert. AVEds. Nonprofit agency located in the Milwaukee area provides comprehensive auditory programming to individuals with hearing loss, from infants to the elderly. The Birth to Three program serves children from throughout Southeastern Wisconsin, including education in the home, toddler communication groups, and individual speech therapy. AV Therapy is also provided to school-age children locally as well as through ConnectHear, an interactive teletherapy program. Pre- and postcochlear implant training is provided for adults and communication strategies and speechreading is offered to individuals as well as in small groups.

Advanced Bionics Corporation............................................................................7

I NTERNATIONAL n Canada Children’s Hearing and Speech Centre of British Columbia ( formerly

Cochlear Americas.............................................................................................13

The Vancouver Oral Centre for Deaf Children), 3575 Kaslo Street, Vancouver, British Columbia, V5M 3H4, Canada • 604-437-0255 (voice) • 604-437-1251 (tty) • 604-437-0260 (fax) • www. childrenshearing.ca (website) • Janet Weil, Principal and Executive Director, jweil@childrenshearing. ca. Our auditory-oral program includes: onsite audiology, cochlear implant mapping, parent guidance, auditory-verbal education, preschool, pre-kindergarten and K, Primary 1-3; 1:1 therapy sessions, itinerant services and teletherapy.

Auditory-Verbal Center, Inc................................................................................40 CapTel...................................................................................... Inside Back Cover Central Institute for the Deaf................................................................................4 Clarke Schools for Hearing and Speech...........................................................16

Dubard School for Language Disorders............................................................32 Ear Technology Corp. (Dry & Store)...................................................................23 Harris Communications.....................................................................................21 MED-EL Corporation.......................................................................... Back Cover

Montreal Oral School for the Deaf, 4670 St. Catherine Street, West, Westmount, QC, Canada H3Z 1S5 • 514-488-4946 (voice/ tty) • 514-488-0802 (fax) • info@montrealoralschool.com (email) • www.montrealoralschool.com (website). Parent-infant program (0-3 years old). Full-time educational program (3-12 years old). Mainstreaming program in regular schools (elementary and secondary). Audiology, cochlear implant and other support services.

National Technical Institute for the Deaf - RIT.................................................. 33

n England The Speech, Language and Hearing Centre – Christopher Place, 1-5

Songs for Sound.................................................................................................12

Christopher Place, Chalton Street, Euston, London NW1 1JF, England • 0114-207-383-3834 (voice) • 0114-207-383-3099 (fax) • info@speechlang.org. uk (email) • www.speech-lang.org.uk (website) • Assessment, nursery school and therapeutic centre for children under 5 with hearing impairment, speech/language or communication difficulties, including autism. • We have a Child Psychologist and a Child Psychotherapist. • Auditory-Verbal Therapy is also provided by a LSLS Cert. AVT.

Oticon...................................................................................... Inside Front Cover St. Joseph Initiative for the Deaf................................................................. 29, 43

Stanford Initiative to Cure Hearing Loss..............................................................5 Tucker-Maxon School for the Deaf................................................................... 45 2013 AG Bell LSL Symposium...........................................................................17 AG Bell 101 FAQs.............................................................................................. 39 AG Bell Financial Aid..........................................................................................22 AG Bell Learn & Earn..........................................................................................41

VOLTA VOICES • MAY/JUNE 201 3

Up Front

on the Back Page

Matthew Browne LOFT Counselor Speaks about Advocacy, Technology and Exploring the World Interview by Susan Boswell

One of the most profound and revolutionary experiences for children who are deaf and hard of hearing is the simple exposure to peers, mentors, and role models who share or have shared many of their same experiences. AG Bell and the John Tracy Clinic provided this for me, and also for my parents, who were just as lost and in need of a support system. LOFT was a coming of age experience. Although I had greatly benefited from AG Bell and made a lot of friends with other people with hearing loss who were my age, LOFT provided me with my first big step toward independence. LOFT forces you to get out of your comfort zone and peel back the layers on real-world challenges that individuals who are deaf and hard of hearing face on a daily basis. This makes the experience so worth it, but it is also a lot of fun and gives you the chance to find out more about yourself as an individual. My most memorable experience as a LOFT counselor was during my first year when I realized at the end of the week how much inspiration we counselors actually receive from the teens that we are trying to inspire. Deafness can be a challenge to live with every day, but I was blown away by teens who were dealing with physical conditions in addition to hearing loss that I realized had an even better outlook on life than I had at their age.

Hiking on the Appalachian Trail in Charlie’s Bunion, an area named in the early 1900s for a giant rock at the end of the trail which resembled Charlie’s big toe.

LOFT forces you to get out of your comfort zone and peel back the layers on real-world challenges that individuals who are deaf and hard of hearing face on a daily basis. When we have that self-awareness and understand that the bottom line is that we’re not receiving all of the information or assistance that we need, the challenge of advocating for ourselves goes from an insurmountable obstacle to one that we’re willing to confront. Listening is something that people who are deaf and hard of hearing need to practice for their entire lives, so I enjoy any chance to push myself to hear better in tougher situations. I listen to the radio and to podcasts on my phone as often as I can while running, in the car, etc., because it is a great passive exercise that doesn’t take time away from other daily activities. It would be nice if existing technology were a little more advanced in several areas. I would love to own a compact per-

sonal FM system that would be as simple as attaching a small lapel or over-the-ear microphone to a few other people for communicating during a hike, a car ride, or team sports. However, the technology hasn’t advanced to the point where it is both compact and cost-effective to purchase for fairly infrequent use. I love hiking, distance running, and wandering off the beaten path. Nothing beats fresh air and appreciating nature through your own eyes rather than through photographs, or the feeling of hard work paying off with the view from a mountaintop or of a giant waterfall. When I travel to new places for sightseeing, I always immediately look for the best walking routes, where I can appreciate the sights at my own pace, rather than guided tours or vehicle tours.

We Want You on the Back Page! Read the entire interview online on the Listening and Spoken Language Knowledge Center at ListeningandSpokenLanguage.org/BackPage. If you have stories to tell, experiences to share and a perspective on hearing loss for this column, please send an email to editor@agbell.org and tell us a bit about yourself.

VOLTA VOICES • M AY / JUNE 201 3

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