2019-20 Northeast Ohio Edition
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A RESOURCE GUIDE FOR INDIVIDUALS WITH SPECIAL NEEDS AND THEIR FAMILIES
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100 LIFE NEEDS Get the Basics
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Check Out THE MISSION LiveSpecial.com is a free and comprehensive Northeast Ohio online, go-to resource for all things required to support individuals with special needs and their families. LiveSpecial.com includes an easy-to-navigate community resource guide that provides the most current medical, social and rehabilitative services and access information needed to help support any age person with special needs.
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WE ARE COMMITTED TO BEING NORTHEAST OHIO’S GO-TO ONLINE RESOURCE TO SUPPORT INDIVIDUALS WITH SPECIAL NEEDS AND THEIR FAMILIES.
Email GetAnswers@LiveSpecial.com to receive firsthand information and updates.
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Executive Director's Note ABOUT THIS PUBLICATION
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h, the places you’ll go,” exclaimed Dr. Suess as he challenged us to experience the world in his untraditional, entertaining way. The storytelling genius would be delighted with this issue of the LiveSpecial.com magazine. It charts 100 places in Northeast Ohio that are accessible to all and conform to the Americans with Disabilities Act requirements — with more on the way. As Dr. Suess says, “You’re off to great places! Today is your day! Your mountain is waiting. So...get on your way!” Another great place for people with special needs to go is National Council of Jewish Women/Cleveland’s redesigned, relaunched LiveSpecial.com website, created for the benefit of people of all ages with temporary or long-term needs. Take a fresh look at the new website. It is more user-friendly, more modern in look and feel, and easier to navigate. With more than 1,200 providers, LiveSpecial.com assists you in finding therapists, financial planners, doctors, dentists, recreational opportunities and many other resources for individuals with special needs. Most folks will encounter a short-term disability at some point in their lives. People undergoing hip or knee replacement, seniors facing ambulatory issues, or adults whom accidents have temporarily incapacitated all can benefit in different ways from LiveSpecial.com magazine articles and the LiveSpecial.com website. Others have long term differences that they don’t consider traditional “disabilities,” such as migraines, fibromyalgia or food intolerance — needs also addressed by LiveSpecial.com. Whatever your challenges might be, LiveSpecial.com’s magazine and website can help. To paraphrase Dr. Seuss, “You’re NOT on your own. You can see what WE know. But, YOU are the guy who’ll decide where to go.”
Mindi Axner
Publisher's Note
livespecial.com ncjwcleveland.org PRESIDENT Elaine Geller president@ncjwcleveland.org EXECUTIVE DIRECTOR Mindi Axner 216-378-2204 ext. 103 maxner@ncjwcleveland.org VP COMMUNICATIONS Leslie Royce Resnik lresnikhome@att.net LIVESPECIAL COORDINATOR Wendy Spitz 216-378-2204 wendy@livespecial.com LIVESPECIAL ADVISORS Jennifer Boroff Elaine Eisner Cindy Glazer Laura Kuntz Nessa Siegel
EDITOR Angela Gartner
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ou hold in your hands the fifth annual edition of the LiveSpecial.com magazine — and in my opinion, it just keeps getting better! The audience, YOU, have contributed greatly to refining this publication over the years. We hope you enjoy it and find it useful for yourselves, family, friends or other associates. LiveSpecial.com is for everyone. Whatever age or challenge you or your loved ones face, the magazine is designed to provide in-depth and helpful content, resources and providers. We hope you are drawn in by the engaging stories of individuals and families with special needs and make connections within the Northeast Ohio community. Northeast Ohio Parent and Northeast Ohio Boomer & Beyond magazines are proud to partner with NCJW/CLE's LiveSpecial to continue showcasing Greater Cleveland as a supportive region to those with special needs. Do you have a story idea for our next edition? Email editor@northeastohioparent.com or wendy@livespecial.com
Brad Mitchell livespecial.com 2019-20
26055 Emery Road Warrensville Heights, OH 44128
PUBLISHER Brad Mitchell
LIVESPECIAL̛S 5th EDITION
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A PROJEC T OF
MANAGING EDITOR Denise Koeth ART DIRECTOR Laura Chadwick CONTRIBUTORS Nessa G. Siegel, Lindsey Geiss, Cindy Glazer, Michele Bailey, Janet Cho, Dorothy Miller, Heather Tunstall LiveSpecial Resource Guide is published by Northeast Ohio Parent Magazine and Mitchell Media LLC PO Box 1088 Hudson, OH 44236 330-822-4011 Copyright 2020 by NCJW/Cleveland and Northeast Ohio Parent
2019-20 Edition
Departments
ON THE COVER
Two families — the Dunkles, of Westlake, and the Durhams, of Elyria — come together at Cleveland Metroparks’ Merwin‘s Wharf. The waterfront restaurant provides scenic views and hard surface walkways. clevelandmetroparks.com
WORTH NOTING 06 Hearing loops, Book Corner, integrated employment, Allison Rose Foundation. EDUCATION 08 Tips to help navigate your child’s school field trips.
Photos by Kim Stahnke Photography
09 How to boost executive function skills. 10 Jon Peterson Scholarship: a parental choice. THERAPIES 12 T he ancient art of infant massage comes of age.
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100 inclusive places to go in NEO Find sensory-friendly and accessible attractions, destinations and establishments for people with special needs.
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Features
DUAL DIAGNOSIS
When dealing with children with multiple diagnoses, find balance and manage the variety of services and resources.
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LIFE BASICS
From haircuts to driving to therapy, find services to navigate the challenges of everyday life.
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PEOPLE TO KNOW
These individuals and families provide support for the community with special needs.
22 Creating sensory rooms. FAMILY MATTERS 16 Nurturing sibling relationships now and into the future. 18 Enhance your child's social skills learning.
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KEEP SAFETY TOP OF MIND
Diving into the issues of human trafficking and safety in the community for people with special needs.
19 12 tips for communicating with a deaf person. 26 Adapted sports benefit everyone. 35 Inclusive opportunities found at parks. 42 T he importance of person first language.
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TECHNOLOGY 24 Increasing independence through technology.
St. Joan of Arc School and Chagrin Valley Little Theatre's Penguin Project provides drama experiences to kids with special needs.
PLANNING 45 Transition planning for children who are “aging out” of the system.
JUST TRY IT: STAGE FUN
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DIRECTORY
Find local resources for families.
50 Ensuring equal opportunities for all students.
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Worth Noting
Get In the HEARING LOOP By Dorothy Miller
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making my usual mental note that if I could not hear, I would leave. Sitting way back from the front, I was surrounded by hundreds of people. I turned on my tele-coil experimentally and was instantly astounded. I could not have heard better if the priest was sitting next to me. Places of worship and libraries appear to be leading the pack in terms
HOW A HEARING LOOP WORKS
of installing loops in their facilities, followed by theaters. Places with loops in Northeast Ohio include: Anshe Chesed Fairmount Temple, Aurora Community Theatre, Judson Manor, Old Stone Church, Temple Tifereth Israel, Trinity Cathedral, UU Society of Cleveland, and Weathervane Theatre
in Akron. For lists of places in the U.S. with loops, go to hearingloop.org. Note that looped facilities are added voluntarily, so a place of interest to you may already be looped but may not appear on the list. Theaters, city councils, and community rooms in local towns all could benefit from loops, and the cost of installation is minimal for institutions when compared with other innovations. Installation should include the International Electrotechnical Commission (IEC) performance standard. Institutions also need to be attentive to signage indicating the presence of loops, and staff training with regard to routine but necessary tasks (e.g. turning on the loop!). You can get more information about loops from me (dorothy.miller@ case.edu) and the Hearing Loss Association of America (hearingloss.org). Dorothy Miller, a Cleveland member of NCJW, is a writer and independent scholar who is writing a book about people’s experiences with hearing loss and what can be done in our communities to help them.
GRAPHIC COURTESY OF OTOJOY
f you’ve never heard of hearing loops, you are not alone. As a technology, loops are pretty old, having been in use for decades in Europe. As a trend, hearing loops are pretty new in the U.S., however. And, in places where people find out what they can do, they are proliferating. Hearing loops, also known as induction loops, are copper wires installed around the periphery of a room or, in the case of large venues, criss-crossing a room. When a connected microphone is turned on, the sound is directly transmitted via a magnetic signal to the ears of people wearing hearing aids equipped with tele-coils, bypassing ambient noise and reverberations. Most hearing aids have telecoils, and when they are turned on, voila! People without hearing aids also can benefit from hearing loops, via a device hung around their necks. Having worn hearing aids since the age of 35, I have always looked for more ways to communicate, not to mention participate, in society. My first encounter with a loop was in England. While in York for a conference, I attended a service at York Cathedral,
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PHOTOS COURTESY OF TWO CAFE AND BOUTIQUE AND NANCY BALLUCK
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Employment Opportunities for All By Angela Gartner
ome shops in Northeast Ohio are working to provide opportunities and training to people with special needs. The Two Cafe and Boutique and Two Foundation in Chagrin Falls was created by Shari Hunter. The cafe is more than a place that serves up healthy farmto-fork eats; it also has a goal to help the special needs community. “Derek (my son) is my inspiration and motivated me to do what we do,” says Hunter, who has owned the cafe for almost five years. The organization provides training and employment to people with special needs in several counties including Geauga, Cuyahoga, Lake and Portage. Hunter says they work with 40 local businesses who hire from the cafe and foundation. “They are business partners and what we do is target full integration in the workplace,” she says, adding they have placed more than 100 people. Two Cafe and Boutique is a place where employees can learn to work, but Hunter says it’s much more. “They learn to follow directions, how to take initiative, work with a team, but also learn manufacturing, sales, customer service, baking — how to prepare for a life of independence beyond the workplace,” Hunter says. “These companies have the heart to know that if we can screen, coach and train, then it’s a win-win for everyone, the (employees) just need the help and opportunity and we are here to give that to them.” For more information, visit twocafeandboutique.com
BOOK CORNER THE EXPLOSIVE CHILD: A New Approach For Understanding And Parenting Easily Frustrated, Chronically Inflexible Children By Ross Greene, Ph.D. Throughout the book, Greene provides a new conceptual framework for understanding their difficulties, based on research in the neurosciences. He provides a collaborative problem solving model and promotes working with explosive children to solve the problems that precipitate explosive episodes, and teaching these kids the skills they lack. BROCCOLI BOOT CAMP By Keith Williams, Ph.D., and Laura J. Seiverling, Ph.D. For caregivers who have children who are selective or picky eaters, this book provides strategies and interventions on how to help expand diets and mealtime behaviors. DIFFERENTLY WIRED: Raising an Exceptional Child in a Conventional World By Deborah Reber Who Reber calls the “differently wired” kids are the one in five children with ADHD, dyslexia, Asperger’s, giftedness, anxiety, sensory processing disorder, and other neurodifferences. She provides an eye-opening journey with her son who is twice exceptional. The book is a how-to, a manifesto, a book of wise advice, and the best kind of been-there, done-that companion.
ALLISON ROSE FOUNDATION HELPS FAMILIES WITH YOUNG ADULTS IMPACTED BY FOOD ALLERGIES
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he Allison Rose Foundation aims to change lives for food allergy families through education, awareness, research and advocacy. The foundation was formed in memory of college student Allison (Ally) Rose Suhy, of Independence, whose life ended tragically in November 2017 as a result of an anaphylactic food allergic reaction. The nonprofit organization strives to decrease and eliminate untimely deaths of children and young adults due to food allergic reactions. For more information or upcoming events, visit allisonrosefoundation.org or @allisonrosefoundation on both Facebook and Instagram. livespecial.com 2019-20
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Education TALK TO THE TEACHER
1. What is planned for the students on the field trip? 2. Is it possible for you to be one of the chaperones? Do you wish to be? (They cannot require this.) 3. What is the teacher concerned about? Give them the tips and information in writing. 4. Note things that may be “triggers” for your child so that they can possibly be avoided. LOOK INTO THE DESTINATION
1. Have you been there before? If so, talk about it or share pictures. 2. Can you go there before the field trip to get some answers and to give your child some familiarity? 3. Check out the destination’s website. This will make the setting more familiar and will help get your child excited about the trip. 4. Find out about handicap accessibility. Check out the bathrooms.
MAKE IT THE BEST FIELD TRIP
Tips to help navigate your child’s school excursions By Cindy Glazer
School field trips represent real inclusion — participation in the real
world. Isn’t that just what we wish for our children with special needs? It may not be easy, but with careful planning and a little research, it
can be a great experience. The school staff might be reluctant, as the chaperone or field trip instructor will not know everything the teacher knows, but doing your homework will help.
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GENERAL TIPS
1. Is food being served or packed? Be sure to share any pertinent information about likes and dislikes, allergies or food issues — in writing. 2. Send information about medication. 3. Send emergency contact information. 4. If your child has a friend who is especially good with them, be sure to suggest them as a partner or buddy.
Field trips are special experiences. Communication and preparation can make them a positive experience for your child and for you.
Education
— and how long they might take to complete. Many sorts of devices such as visual timers and speciallydesigned wrist watches are available to assist children with attention issues and help them with time management.
How to Boost Executive Function Skills By Julie Billiart Schools
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he first time you’re told that your 5-year-old has weak “executive functions,” you think it’s a joke. No kidding; isn’t that why he’s in kindergarten and not the president of a Fortune 500 company? Executive functions are the necessary self-regulating skills that we all use every day to accomplish just about everything from getting out of bed to fixing a meal, even to watching a television show. They help us plan, organize, make decisions, control our emotions and learn from past mistakes. Children with poor executive functions are more disorganized than other kids. They might take an extraordinarily long time to get dressed or become overwhelmed while doing simple chores around the house. Schoolwork can become a nightmare because they regularly lose papers or start week-long assignments the night before they are due. However, there is help: specific strategies and teaching styles can enhance a child’s individual abilities while helping them tackle school work, as well as other tasks that require organization and follow-through.
CHECKLISTS The steps necessary for completing a task often aren’t obvious to children with executive dysfunctions. A checklist allows children to focus their mental energy on the task at hand. A “morning routine” checklist that includes
steps like making the bed, brushing their teeth, getting dressed and eating breakfast can be particularly helpful for children to get themselves off to school on time. These checklists can be visual charts for young learners with limited reading abilities.
SET TIME LIMITS When making a checklist, assign each step a time limit, especially if it is a big or longterm project. Involve your child in creating the list and breaking down the task into smaller segments. This will help them get used to the steps involved
EXPLAIN THE REASONS While children are learning new skills, it is important that they understand the reason behind them, or tasks like planning may feel like a waste of time. Children with executive function issues tend to measure the outcome of a task to see if it’s worth their effort — planning can feel like a waste of time if they don’t understand the reason behind it. Explaining the rationale behind a strategy makes children more likely to commit to doing it. It is important to then reward the effort and willingness to try a new strategy. Developing new learning strategies isn't always easy, however, once this becomes part of a child's regular activity, it can help them be successful in doing tasks and beyond.
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Education
Here are some additional facts you need to know about the JPSN Scholarship Program and how it may fit your child’s needs. • T he child must have an evaluation team report (ETR) and individual education plan (IEP) through their school district.
• The scholarship may be awarded for students in kindergarten through 12th grade.
A PARENTAL CHOICE
Jon Peterson Scholarship
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ducating our children is one of the parenting jobs that can be all-consuming given the abundance of choices, resources and options out there these days. Staying up-to-date on it all can be overwhelming. psi takes away the guesswork surrounding the Ohio Department of Education Jon Peterson Scholarship. The Jon Peterson Special
Needs (JPSN) Scholarship Program began in 2012 as the fourth voucher program in Ohio (the state also offers an Autism Scholarship Program). It is a parent-driven scholarship that provides financial assistance, annually, to parents of children with disabilities and may be used to fund special education services other than those operated by their school
• The parent must reside in Ohio. By Julie Wood, Ph.D., psi Director of Educational Support Services
district of residence. The Jon Peterson Scholarship provides a great opportunity for parents of children in special education programs to receive up to $27,000 in scholarship funds for educational and supportive services. The specific scholarship award amount is determined by the disability category identified in your child’s evaluation team report (ETR).
• The scholarship often is utilized by parents for services in nonpublic schools; however, it is not required that the services take place within the nonpublic school building. • Children can have multiple state-approved Jon Peterson providers. • Eligibility is not based on your family’s income.
• Children receive customized services and support in a 1:1 or small group setting.
• The services can be provided during the school day, after school, before school and on weekends depending on the provider and the facilities/education buildings being used.
psi is an approved Jon Peterson Scholarship provider, serving hundreds of students with special needs under the JPSN Scholarship Program. It partners with nonpublic schools and parents to supply innovative and high-level educators to effectively tailor services of support and provide a quality education that will meet your child’s needs. Services offered under the Jon Peterson Scholarship include: intervention services, speech/language therapy, physical therapy, occupational therapy, educational services, tutoring, health services and more. For more information, contact psi at 800-841-4psi or visit psi-solutions.org. Visit education.ohio.gov/jonpeterson on the Ohio Department of Education website for additional information.
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The Ancient Art of Infant Massage Comes of Age in the 21st Century By Kristine Snell, LISW-S Certified Educator of Infant Massage
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hether you are experiencing your first child or baby number four, all parents want the same thing: for their child to be healthy, confident and able to enjoy life. One resource that can support your parenting journey is infant massage. It can help in early parenting challenges such as soothing a fussy baby, helping with digestion and developing sleep routines. “Infant massage is an ancient art that connects you deeply with the person who is your baby, and helps you to understand your baby’s particular nonverbal language and respond with love and respectful listening,” says Vimala McClure, founder of the International Association for Infant Massage (IAIM). “It empowers you as a parent, for it gives you the means by which you become an expert on your own child.”
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The Achievement Centers for Children has been offering free infant massage classes for babies of all abilities. Sensational Baby infant massage classes are led in a five-week series to give both the parent and baby time to learn and become comfortable with massage. Babies ages 6 weeks to pre-crawling benefit best from these classes, as the child is more focused on the parent at this stage of development than exploring around them. All parents find that they can adapt and use the massage strokes as their child grows older and it often becomes part of a requested bedtime routine. For children with an identified disability or health need, please check with the child’s physician to determine if there are any restrictions to share with the instructor.
Each week, parents learn strokes for a new part of the body while reviewing strokes from previous classes. Parents find that the strokes and styles of baby massage are easier to grasp when demonstrated by experienced and certified instructors. Pressure, rate, rhythm, the length of the massage, respect, bonding, why baby cries, baby’s body language, positioning of the baby, relaxation and parent empowerment are some of the skills and topics that are explored in class. The class setting also gives parents a chance to meet with other families and share both experiences and support. The Achievement Centers for Children is a Cleveland–based nonprofit organization whose mission is to empower children and adults with disabilities and their families to achieve their greatest potential. Initiatives in early intervention include Help Me Grow, Early Childhood Mental Health and Early Intervention Home-Based Services. For more information about upcoming Infant Massage classes and registration, visit achievementcenters.org or call 216-292-9700.
PHOTO COURTESY OF ACHIEVEMENT CENTERS FOR CHILDREN
Therapies
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Dual w
Diagnosis By Michele Bailey
Photos by Tam Photography
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wenty-seven-year-old Megan Jones lights up when she is doting on her little girl. You can even hear the loving joy in her voice as she describes 4-year-old Aryia. “She is a girly girl,” Jones shares. “She loves to dress up. She loves to be outside and she loves being around people. In spite of all of her problems, she does not complain about anything and acts as if nothing is wrong.” Aryia suffers from what often is referred to as co-occurring illnesses, co-occurring disorders or, in some cases, dual diagnosis. A child who has a dual diagnosis has two separate illnesses, each of which needs its own treatment plan. Immediately after birth, Aryia faced physical challenges. She was diagnosed with dysphagia, which meant she had difficulty swallowing and would have to be fed through feeding tubes. Then she was diagnosed with periventricular leukomalacia (PVL), a form of brain damage that typically leads to cerebral palsy. “I thought we were going to get one diagnosis and that was it,” Jones says. “I didn’t know that cerebral palsy comes with a whole laundry list of other issues. You can get one diagnosis and then you get a feeding tube. Then you get, ‘She needs glasses.’ Then you get, ‘Oh, potentially your daughter is not going to walk.’ and I think that hit me hard. Here are four more other things to add to your list.” The cerebral palsy coexists with other conditions that affect Aryia’s life. Some of these conditions are related to cerebral palsy, but others are unrelated.
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She travels with a backpack that stores her feeding tube. She is hooked up continuously for 14 hours a day. She has a coil implanted just underneath her skin that allows her mom to use a magnetic device to control her seizures. Aryia doesn’t talk but she nonverbally communicates her likes and dislikes. She doesn’t walk, but enjoys dance classes in her wheelchair and frequent trips to Target with her mom. Though she is visually impaired, she does wear glasses. Her mom and dad, 29-year-old Jeremie Keaton, don’t exactly know what she sees, but they know she sees some things. “We went out to breakfast and we were sitting outside in front of a splash pad area,” Jones says. “We had Aryia in her wheelchair and she was trying to look back to see the kids. I told Jeremie to turn her around because she wants to see the kids. When she turned around, her face just lit up. (Keaton) said he noticed for the first time that she just wants to be a kid. That she just wants to be included.” Jones admits that initially when the cooccurring illnesses were revealed bit by bit, she and Keaton felt resentful. “We were very resentful at first because all of our friends our age were having these typical kids and were not going through the trauma that we were going through,” Jones says. “That really bothered us. However, then I just realized that unfortunately this is our normal. This is our life now and there is nothing we can do about it. So I adapted.” While there are days that Jones still feels her family’s situation isn’t fair, she quickly moves past those feelings and moves on to enjoying her child.
“I treat her like a normal kid,” she says. “I take her places. I do things with her. I dress her up. I ask her what does she want to do and I wait for an answer. I treat her like a little kid.”
Dual Diagnosis Explained
Learning that your child has been diagnosed with a dual diagnosis, or cooccurring illness, can feel overwhelming and complicated. It is a situation that is not easy for parents to cope with. An example of a dual diagnosis is a child who suffers from diabetes but also has ADHD — it can be any number of combinations involving mental health, physical health and developmental disabilities. Parents of these children can experience many struggles, according to Steve Case, director of specialty services and early childhood programs at Child Guidance and Family Solutions in Akron. He outlines some of the challenges: “When families are seeking help for their child, they typically are seeing someone who has a specialty or scope of practice in one area. That professional may be struggling to connect the dots with whatever problems the child may be living with because the problems could be caused by something outside their scope of practice. “As an example, a parent may have a child that is having tantrums and difficulty following directions,” Case continues. “From a mental health perspective, this could be ADHD, where they struggle to focus and regulate
themselves, or it could be or what to do. They may outside of that scope. It have negative assumptions could be a sensory issue. and not be as supportive to Maybe the kid has a really the parents. hard time with loud noises and when the parent is giving a directive for them to do something in a loud voice, it triggers the kid. If a mental health professional Parents of dually diagnosed doesn’t understand the children often feel alone. On left and right: Four-year-old sensory component, they Those feelings can really Aryia Jones and her family may fail to recognize that take a toll on a parent. there is another problem; thus, Case stresses that delaying a full diagnosis and progress parents should actively seek out toward solutions.” communities of other parents where they could go for peer support. He adds that reaching out and being active within those communities will lead to interaction with parents who have had similar experiences. A child with two conditions has the Their experiences can normalize and potential for twice the stigma. There is validate how a newly dually diagnosed a lot of judgement, and in some cases family feels. More importantly, parents embarrassment and shame, that parents can hear messages of hope. They will can experience from other people. learn that they are not alone and that For instance, if the child has a severe things will get better. mental health issue that is a stressor to Connecting for Kids Founder and others, and also because of the stigma Executive Director Sarah Rintamaki attached to mental health issues, family says that it is common for parents to and friends may not know what to say feel despair when additional diagnoses
Feelings of Isolation
Twice the Stigma
are added to a child. She knows from experience — both her sons were dually diagnosed — that it can be difficult finding the support you need. Rintamaki found that the majority of nonprofits focus on single disorders, but many families have children who don’t fit into any one single box. She founded Connecting for Kids, a non-profit organization in Westlake, that provides free educational programs, support groups, parent matches and numerous resources for families with concerns about their child. Support groups help Jones to deal with these tougher times. Through a Facebook mom’s group, she learned about Connecting For Kids. “I go to the parent support groups,” Jones says. “They are very helpful. “Undoubtedly, Aryia will be challenged with developmental disabilities and they may affect her behavior. We don’t know right now because she is so young,” Jones adds. “At times, the little things add up and then it hits you big — but you sleep on it and the next day is a new day and you get over it. I don’t want to complain about our situation because somebody has it worse than I do. My daughter is here and she is happy.”
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Family Matters
Sibling
Relationship Through ASD, the Seasons and the Future By Lisa Danielpour
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hen my oldest son, Aaron, who has Asperger syndrome, was young, I immersed myself in ever-evolving goals for him, including school, social skills and life skills. Summer always brought fun mixed with excitement and nervousness when planning for the new school year, and gave us valuable time for skill development. Our joy expanded when we had our second son, Josh, who presented new complexities and made us think through how to make the summer special for each of them. We wanted to enrich their relationship as brothers and have family time together, all while honoring Aaron’s needs balanced with Josh’s. As a neurotypical, energetic child, Josh loved noisy activities that could push Aaron’s sensitivities to sound or light into overdrive. Whether he was playing with noisy toys or plunging head-first into a kid-filled swimming pool, Josh leaped into experiences that could set Aaron’s sensory issues on edge. Aaron’s special interests such as exploring an art museum’s blockbuster exhibit for hours on end bored Josh endlessly. I found compromises like visiting the Cleveland Museum of Art’s knights in shining armor displays for Josh in between Aaron’s art tours. Throughout the years, I have learned many lessons related to fostering the best relationship between my sons and accommodating their needs as individuals. Here are some tips from my experience: ❚ Pick fun summer activities that meet each child’s interests and needs. We made sure to plan special times as a family, but also tried to arrange oneon-one time with each child.
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❚ Use tools like social stories or picture schedules to prepare for different activities, such as going swimming and teaching water safety. ❚ Think through summer festivities like summer picnics and how they will flow and be experienced by your children. What sensory challenges will they pose? Are there activities planned in which you can engage your children together?
Back-to-School Preparation ❚ Select a few life, academic or social skills goals to work on during the summer. ❚ For school challenges and transitions, consider utilizing Milestones Autism Resources for new strategies and support. I turned to Milestones when Aaron started high school. Their guidance was so helpful that it grew into longer term help for years to come. ❚ Talk with your child about what the next school year will be like. Contact your child’s school to set up a time to walk through the school early and meet teachers before the school year begins. Aaron has always been a protective, adoring older brother. When Josh became ill with Crohn’s disease at 13 years old, Aaron comforted Josh in a very special way. Their close relationship has grown over the years so that as Josh has come to understand Aaron’s challenges and strengths, he is able to support him, too. As they transition to adulthood with Aaron at 25 and Josh at 18, their relationship has matured and deepened, which is the best gift of all. Giving each son the right time and support poses a delicate balance that we cannot always get just right. We do our best as parents and hope we’ve done everything we can to foster their relationship to offer them a strong foundation for adulthood. Lisa Danielpour is a marketing and social media consultant from Beachwood. As the mother to a young adult on the spectrum, Lisa has utilized Milestones Autism Resources’ services and now serves as Milestones’ digital content/communications consultant and volunteers her time on the Milestones Communications Committee. Her blog, gooseling.com, features articles to support families raising children and teens with special needs or chronic illnesses.
PHOTO COURTESY OF LISA DANIELPOUR
Nurturing Our Sons’
❚C ompromise on things that won’t work for your child. For example, we tried different approaches for Aaron’s sensitivity to firework sounds. What often worked best was watching them on TV at home while my husband took Josh to see them live. ❚P repare for summer travel ahead of time — and again, know when to compromise on the itinerary. Share what to expect using social stories, especially for flights and how to behave when going through airport security. Pack snacks and entertainment that each child can enjoy on their own or together.
Family Matters
How to Enhance Your Child’s Social Skills Learning
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By Veronica Zielinski, MSSA, Behavioral Support Specialist, Friendship Circle of Cleveland
ocial situations can present unique challenges for children with special needs. Friendship Circle programs are designed to address these needs. Friendship Circle’s formula of pairing together children with compassionate teenagers stimulates valuable social skills, while maximizing enjoyment and minimizing anxiety. You can take steps to broaden your child’s social sphere each day, as well as in targeted steps before a new transition.
ENCOURAGE CONVERSATIONS WITH OTHERS Take advantage of acquaintances in your circle — people less familiar to your child but still safe to talk with can provide opportunities for your child to engage in conversation. Resist the urge to answer simple questions about your child when others ask them. Instead, direct the question back to your child and wait for them to answer. Even a nonverbal response (i.e., holding up four fingers to show her age) can accustom your child to interacting with new friends.
PROVIDE CONVERSATION STARTERS The “small talk” that seems automatic to us can be mysterious to a child still developing
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social etiquette. Help your child think of some phrases that can work in any conversation: comments about the weather, a sports team or weekend plans. If your child is a visual learner, you can make a list for them to keep on hand. Having some stock phrases in mind can equip the child for unexpected interactions.
wish. When the role play is over, you can discuss how it went and offer modifications that may improve the real-life occasion. Working on the exchange in “rehearsal” gives children a friendly critique on their response that can be used to refine their reactions in the real situation.
SOCIAL STORIES
NEW CONCEPTS, LITTLE BY LITTLE
Social stories help individuals prepare for an event through narrative. A social story describes a new or challenging situation in upbeat prose to give the child a reasonable expectation and potential outcomes. A social story can be customized to your child’s unique needs, vocabulary, and reading level. Read the story with your child several times before an event to increase their comfort with the event and the responses expected of them.
Early preparation is paramount to your child’s adjustment. By slowly introducing new people or places into your child’s world, they will be more familiar with change. Introducing a new person should happen in a comfortable environment so your child can focus on one new stimulus at a time. Introduction to a new place can happen in stages, as well. Taking advantage of the “teachable moments” in your child’s life, along with continued patience and encouragement, contributes to a higher likelihood of success in social learning as your child grows. Once the fear, stress and anxiety of new people and places is alleviated, children can relax and have fun, learn new skills, and make new friends.
ROLE PLAYING Role playing allows children to rehearse a new situation in a safe environment before it unfolds in real time. You can act as a new friend and your child can act as themselves. Offer remarks and questions as a new peer would. Your child should respond as they
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Family Matters
1
Use a normal speaking pattern. Overenunciating makes it hard for a deaf person to read your lips.
2 3
Write it down if necessary. Some people are better at reading lips than others. L ook directly at the person with whom you are communicating. If you look away, a deaf person may miss what you are saying.
4
Speak in a normal tone of voice. Since a deaf person cannot hear you, raising your voice doesn’t help.
5
Try to find your own way to communicate. Although you can’t talk to one another, there are many other ways for you to communicate. You can use a pen and paper or even text to have a conversation.
6
Don’t be afraid to ask a deaf person to repeat themselves. The goal is clear communication and understanding. Asking to repeat something has
TIPS
for Communicating with a Deaf Person better results and less frustration — for both parties.
7
Be patient and inclusive. Imagine you are trying to understand a conversation that you want to be involved in, but are unable due to the conversation’s speed, number of people talking at the same time, and/or not being able to share your ideas with the group. By allowing enough time and considering the communication needs of everyone in the group, you ensure that everyone can participate fully.
8
I n a group conversation, take turns speaking. A deaf person can only look at one individual at a time.
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Be clear and concise. Saying “I’m fine” can have many different meanings with subtle differences. For example “I’m fine” can mean: • I feel well • I feel the same way I always feel • I’m way too busy to know how I feel • Don’t bother me • Did you want to know about my emotional or physical well-being?
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Use body language and gestures. Deaf and hard of hearing people who use sign language are accustomed to using their hands and face to communicate. Gesturing and using clear facial expressions when speaking to a person with hearing challenges can help them understand what you’re saying.
“Miming” also is acceptable if it helps to get a certain point across, but remember that mime is not the same as sign language.
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Accept that awkward moments happen. Even if you follow all of the above tips while speaking to a deaf or hard of hearing person, they’ll probably still misunderstand you at some point. Just repeat yourself and continue the conversation. If they’re having trouble understanding a certain word or phrase, try using a different word, rephrasing what you said, or typing it on your phone.
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Resist the urge to give up when misunderstandings happen. A little effort on your part can make a big difference to someone, and chances are you’ll benefit from the experience, too. For information on American Sign Language classes, visit chsc.org/ asl, or booking an ASL interpreter, visit chsc.org/interpreter.
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Finding Services
for Everyday Life Needs From haircuts to driving to educational programming and therapy, there are services to navigate the challenges of everyday life By Heather Tunstall
A
s your child grows through different life stages, there are plenty of things they will want to explore and lots of basic life activities that they’ll experience for the first time and on a regular basis. Like with any child, activities such as getting a haircut, visiting the doctor or dentist, or starting a new social program can be nerve-wracking with a lot of unknowns. However, children with special needs require a bit more preparation, understanding and sensitivity to have successful experiences.
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It can be an intimidating prospect when your family is taking a new step or trying a new activity, but there are a lot of resources, services and support out there to help you and your child get more comfortable with these experiences. It takes a bit of research and a lot of caregiver involvement to find the right fit, but there is no shortage of wonderful programs to consider. Northeast Ohio resident Joy, whose son was born with hydrocephalus and has since been diagnosed with cerebral palsy,
developmental delays and autism, has found that a holistic approach to therapy and services has been helpful for her family. “What has been key to helping my child grow and have a good quality of life is his occupational, physical and speech therapies, as well as early mental health supports,” she says. “Within a few days after my son was born, a social worker at the hospital connected me with Help Me Grow. They were very helpful in providing therapy for my child, as well as educating me on ways I could help him. They also connected me with the Achievement Centers for Children so that he could continue to receive therapy once he aged out of the Help Me Grow program at age 3.” Several service-oriented organizations are available to help with specific special needs, such as Autism Speaks, The Upside of Downs, United Cerebral Palsy of Greater Cleveland and others. For those looking for services related to multiple disabilities or a more holistic approach, there are organizations such as Hattie Larlham, The Arc and many more to fit your family’s preference and needs. Finding Organizations That Work With You When you work with special needs organizations and social workers, they typically can help you identify resources that specialize in working with children with special needs for basic life needs and activities. For example, if you’re looking for a place to take your child for her first teeth cleaning, or your son wants to start driving, you want to go to a place that has training and certifications that enable them to provide a great experience for families. “With my son having autism, daily life tasks, such as haircuts and medical appointments, can be a challenge,” Joy says. “I find connections by asking questions to anyone that will listen. I talk to doctors, teachers, therapists, etc., and inevitably it leads me further along my path to finding what I need or something new I might want to explore.” “Many times, families are calling us at a relatively vulnerable and stressful
time, seeking services related to a new diagnosis, or have general concerns surrounding their child’s development,” says Trish Sanders, Accent program coordinator & referral specialist for the Achievement Centers for Children. “We listen to their concerns and then work diligently to connect them to the appropriate services we offer, and if warranted, connect them to other agencies in the community that may be of support to them at that time.” Snip-Its, a national franchise with locations in Hudson and Avon, trains its stylists in conjunction with Autism Speaks to meet the needs of children with autism and create a positive experience during haircuts. They provide things like visual checklists for parents to use with kids to prepare them for a visit, hair homecare instructions and other guides. Inshop, their employees are trained to avoid common anxiety triggers while gently talking through each step. That type of interaction translates well to other common life experiences, such as going to the dentist or doctor. Finding practitioners who have specific training for working with special needs patients with a wide range of issues and needs will make the process much smoother and more comfortable. For example, the Special Care Dentistry Association has a database of registered members who specialize in the care of patients with many types of cognitive, developmental, educational, physical, emotional, sensory or mental impairment. If your child decides they’d like to learn to drive, it’s vital to choose
a driving school with the right kind of programming and training to educate drivers with special needs. In particular, look for companies that employ certified driver rehabilitation specialists (CDRS). Daniel Cox, CDRS and CEO of Heights Driving School, with locations throughout Northeast Ohio, stresses the importance of waiting until the teen (or adult) wants to drive before looking into driver’s education. “Only if the child or person wants to drive, that’s when you pursue it — you don’t force it on them,” he says. “Until they want to do it, they won’t be vested in the process. Especially someone with autism, you’re just going to be fighting them. Don’t rush the process. When they’re ready, they’ll let us know.” Heights Driving takes a three-part approach to preparing drivers with special needs for the road. First is a clinical component, where they look at reaction time and attention skills. Next comes critical identification, which is a series of practice sessions where the student is a passenger in the vehicle while a caregiver is driving, and the student identifies critical pieces of information on the road to the caregiver (such as stop lights, traffic patterns, etc.). This second part lasts 30 days, and then an assessment is made whether or not the student is ready to drive. The third component is where they actually have the student driving the car. Modifications can help make most experiences more comfortable and more enjoyable. But the most important aspect of any new experience or activity is caregiver involvement. Your active participation brings an element of understanding and security to the situation that can be the difference between a successful outing or not. Looking for more resources? LiveSpecial.com is a hub of information, where you can filter different types of services and resources based on your child’s diagnosis, the kind of activity you’re looking for, location and more. There, you can find schools, healthcare professionals, social groups, therapy services and other resources that cater specifically to individuals with special needs and their families. livespecial.com 2019-20
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Therapies
Creating Sensory Rooms By Autism Speaks
S
ensory issues are very common for people with autism. Many individuals are highly sensitive to things like bright or fluorescent lights, noisy environments or specific smells or tastes, and may find these types of input to be overwhelming or uncomfortable. Some people on the spectrum are “sensory seekers.” They may be hyposensitive (under-responsive) to sensory input and enjoy seeking out a variety of more intense sensory experiences, like deep pressure or specific textures. Having a sensory space at home, as well as sensory tools and accommodations when out and about, can be helpful — allowing people with sensory issues to self-regulate, feel calm and manage or escape uncomfortable sensory input. Also, many of these things are a lot of fun! We’ve put together some suggestions for great sensory items you can use to build your own sensory toolbox.
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AT HOME You can create a sensory space at home — whether you have a designated room, basement or just a quiet corner. Consider creating your sensory space in a calmer, less busy part of your home with dimmable or lower lighting. Here are some ideas for items to include: • Weighted blanket/pad — there are many options you can purchase, or you can create your own with fabric, plastic pellets and a sewing machine • Yoga ball • Beanbag • Crash pads • Sifting Bin filled with rice, pasta, beads, or other small objects • Swing • Ball pit — you can create an easy and low-cost version with an inflatable kiddie pool and soft play balls • Mini trampoline • Lightbox • Putty, slime, Playdoh or kinetic sand • Tangles • Bubbles • Light-up or spin toys • Mini massagers • Sensory brush • Velcro • Bubble wrap • Stress ball • Squishy/stretchy rubber balls
ON THE GO Many families find it helpful to have a sensory kit they can use when out in the community. This can include items such as: • Noise-canceling headphones • Hat and/or sunglasses • Stim toys WHERE CAN I FIND SENSORY ITEMS? There are often great, lowcost fidget toys available at dollar stores, the dollar section and toy section of local chain stores. Ask your child’s therapists and teachers for ideas and see if they have items you could borrow to test out. An occupational therapist (OT) may be an especially good resource for equipment and sensory ideas. You also can use Google to find many blogs from parents, adults with autism, OTs and teachers who offer many creative ideas for sensory items that they’ve found useful. Pinterest has many options for DIY sensory projects, as well. Be creative and have fun — we recommend trying a variety of toys and items to see what works best for you and your family!
Tech
Increasing Independence Through
TECHNOLOGY
By Jennifer Mashburn, M.A., CCC-SLP, speech-language pathologist for the Cuyahoga County Board of Developmental Disabilities
T
C-Pen Reader Pen
here are many technology tools commercially available to increase independence. The Cuyahoga County Board of Developmental Disabilities (CCBDD) is creating a demonstration smart apartment to showcase several of these tools and to allow individuals a chance to try them out before purchasing them. The apartment, which will open to the public this summer, will feature tools that can be used throughout an individual’s home, as well as technology specific to certain areas of the home. Here are just a few examples of technology that can be experienced in the smart apartment’s kitchen:
Secura 9100MC 1800W Portable Induction Cooktop Countertop Burner
The C-Pen Reader Pen was designed for individuals with reading difficulties, including dyslexia. It can read text aloud in English, Spanish or French and has built-in English, French and Spanish dictionaries. In the kitchen, it can be used for reading things like labels on ingredients, preparation instructions on packages, and recipes. $250, readerpen.com
This induction burner has easy-to-use digital controls and can be adjusted to 15 different power levels. One can touch the surface of the cooktop and not get burned. It also features an automatic shut-off timer that can be set for anywhere between 1 and 170 minutes. $69.99, amazon.com Your Minder Personal Recording Alarm Clock
The Smart Vehicle In addition to the smart apartment, CCBDD also is customizing a van. This Assistive Technology Vehicle (known as the “ATV”) will showcase various assistive technology items and will be available to travel to individuals who cannot easily get to the smart apartment. Visit cuyahogabdd.org for updates on the launch of both the smart apartment and ATV. If you would like more information, contact Kathy Zielinski, CCBDD’s speech/language therapy manager, at zielinski.kathryn@cuyahogabdd.org or 216-736-2730.
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Your Minder allows the user to record their own voice and play back a personal reminder or alarm. It can record up to six personal alarm messages. Because the messages are customized to what an individual needs, it can have many uses while cooking, for example: reminders to check on food to see if it is done, to turn off the stove at a certain time, or even when to start cooking dinner. $49.95, medcentersystems.com
Google Family of Devices (includes the Google Home Mini, Google Home and Google Home Hub) There are many Google Home features that are helpful in the kitchen. You can set a timer by saying, “OK, Google, set a timer for 5 minutes.� Google Home can be set to read a recipe to you step by step; it only moves on to the next step when you tell it to. These devices also provide users with the ability to control certain smart kitchen appliances and gadgets using their voices. $50-$400, store.google.com
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Family Matters
Pure. Simple. Fun. Breanna Sprenger, Youth Challenge athlete, shows why sports are about more than just wins By Chris Garr, CEO, Youth Challenge
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Bre is a freshman at the University of Akron, studying Early Childhood Education. For hundreds of participants and volunteers, YC provides “a platform to become fully human and fully independent.” In Bre’s words, “I am a Renaissance woman because of YC.” Youth Challenge provides opportunities to play for young people with physical disabilities. Founded locally in 1976, it provides adaptive sports at both recreational and competitive levels, in addition to an emerging creative arts program, and leadership opportunities for young adults. With 400 annual programs, there is something unique for every artist, dancer and athlete. Teen volunteers provide meaningful one-to-one
interaction and engage participants as teammates and friends. An efficient transportation program offers safe, door-to-door service, making programs accessible to families who don’t have a lift-equipped vehicle or dependable means of transportation. YC offers a respite for parents and the peace of mind knowing their child is immersed in a positive, empathetic, high-energy and social environment. Best of all, from soccer to skiing, basketball to bus rides, YC’s services are offered at no cost to families.
PHOTO COURTESY OF YOUTH CHALLENGE
B
reanna Sprenger is a young woman who lives passionately, cares deeply and works diligently. She first came to Youth Challenge’s Krazy Kamp from at age 8. Born without legs and with only one arm, Bre made a splash when her mother literally dropped her into the pool. A Paralympic swimmer who competes internationally, she is a regular at fitness programs where she works out with Team YC teammates and teen volunteers. While her commitment to athletic development is essential, she finds that her love for “all things YC” is rooted in something beyond adaptive sport. “It is home, where you can be 100 percent yourself ... opening doors to other opportunities, both athletic and artistic,” Sprenger says.
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The Dunkle (top) and Durham families at Cleveland Metroparks' Merwin's Wharf.
Inclusive Places In NEO Becoming a world class city starts with creating spaces where individuals of all abilities and challenges are welcome. A number of places in Northeast Ohio offer resources that By Janet Cho
PHOTOS: KIM STAHNKE PHOTOGRAPHY
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families might need and appreciate.
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ACCESSIBLE ATT RACT IONS restrooms and more. 1 S. High St., Akron. akronartmuseum.org or 330-376-9185
2. Akron Children’s Museum has made the museum
accessible, inclusive and sensory-compatible, including “Play for All” days with special activities for children with disabilities and their families, and offers sensory bags containing headphones, weighted lap pads and calming sensory items. 216 S. Main St., Akron. akronkids.org or 330-396-6103
3. Akron Civic Theatre has an elevator and accessible seating on each level for wheelchairs or patrons with special needs and for one companion. There also are 16 swing arm chairs available for patrons who wish to transfer from their wheelchair to a seat. All restrooms are accessible. 182 S. Main St., Akron. akroncivic.com or 330-253-2488
4. Beck Center for the Arts
offers Phonic Ear equipment with advance reservations, as well as ramps, elevators, wheelchairaccessible restrooms, and limited wheelchair seating. 17801 Detroit Ave., Lakewood. beckcenter.org or 216-521-2540
5. The Children’s Museum of
Cleveland lets families borrow noisecanceling headphones, sensory toys and other resources upon request. There’s also a sensoryfriendly quiet room with special lighting, classical music, a bean bag chair, a tent, liquid tile mats, a body sock, weighted blanket, tactile wall, and other items. 3813 Euclid Ave., Cleveland. cmcleveland.org or 216-791-7114
6. Cleveland Botanical Garden has held a sensory- and
mobility-friendly day with sensory and adaptive activities for families of children and adults. 11030 East Blvd., Cleveland. cbgarden.org or 216-721-1600
7. Cleveland Museum of Art is wheelchair-accessible,
welcomes service animals, and offers special tours for visitors with special needs, with advance reservations. Large-print museum guides are available, and wheelchairs, strollers, assistive listening devices and audio guide players can be borrowed. 11150 East Blvd., University Circle, Cleveland. clevelandart.org or 216-421-7350
8. Cleveland Museum of Natural History has wheelchairs
and accessible restrooms, and amplification devices. Service animals are welcome in public spaces, except the Perkins Wildlife Center and Woods Garden. 1 Wade Oval Drive, University Circle, Cleveland. cmnh.org or 216-231-4600
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9. Cleveland Playhouse offers wheelchair-accessible seating,
assistive listening devices via headphones or neck loops, and large-print programs. Select matinee performances are open captioned or audio-described for audience members. 1407 Euclid Ave., Cleveland. clevelandplayhouse.com or 216-795-7000.
10. Dobama Theatre offers wheelchair-accessible seats and restrooms, and assisted listening devices on loan. 2340 Lee Road, Cleveland Heights. dobama.org or 216-932-6838
11. EJ Thomas Performing Arts Hall offers a Williams
Personal PA Receiver free of charge for patrons, as well as handicap parking spaces in its parking garage, accessible restrooms, and designated seating areas on the Orchestra and Grand Tier levels for patrons in wheelchairs or patrons with special needs. Adjacent seating for a companion also is available in both areas. 198 Hill St., Akron. akron.edu/ ej or 330-972-7111
12. The Federal Reserve
Bank of Cleveland’s Money Museum is wheelchair-accessible and features hands-on, interactive exhibits. 1455 E. 6th St., Cleveland. clevelandfed. org/learningcenter/visit-us or 216-579-3188
13. The Fine Arts Association offers accessible wheelchair seating. Also, audio description and sign interpretation at specific performances, along with amplifying equipment for persons needing assistance with sound levels. Art therapy programming is offered. 38660 Mentor Ave., Willoughby, fineartsassociation.org or 440-951-7500, 14. First Ladies National Historic Site has a ramp, an
elevator, and a wheelchair-accessible restroom. 205 Market Ave. S, Canton. nps.gov/fila or 330-452-0876
15. Playhouse Square offers sensory-friendly performances
of its children’s theater programs and other shows, including the Aug. 31 performance of Disney’s "The Lion King," which will be its first sensory-friendly Broadway show, with lower volume and stage lights, no startling special effects, and designated quiet areas staffed by volunteers. Playhouse Square also has wheelchair-accessible seating and restrooms, large-print programs, assistive listening headsets, and sign language interpreters and audio-described services with advanced registrations. 1501 Euclid Ave., Cleveland. playhousesquare.org or 216-241-6000
GERALD RAMSEY AS “MUFASA” IN THE LION KING NORTH AMERICAN TOUR. ©DISNEY. PHOTO BYMATTHEW MURPHY.
1. Akron Art Museum is fully accessible in its lobby, galleries,
16. Great Lakes Theater has wheelchair-accessible seats, restrooms and drinking fountains, as well as large-print programs and wireless headsets. Select performances are signinterpreted or audio-described. 1501 Euclid Ave., Cleveland. greatlakestheater.org or 216-664-6064 17. James A. Garfield National Historic Site offers a ranger or volunteer to give tours to visitors with special needs, with advanced request. Visitors also can borrow a wheelchair or folding cane chair, or ride a golf cart. Films are closed captioned. 8095 Mentor Ave., Mentor. nps.gov/jaga or 440-255-8722 18. Maltz Museum of Jewish Heritage is fully accessible
and has wheelchairs available for use. Short films have captions. 2929 Richmond Road, Beachwood. maltzmuseum.org or 216-593-0575
19. Museum of Contemporary Art Cleveland is fully ADA accessible and has wheelchairs available for visitors. 11400 Euclid Ave., Cleveland. mocacleveland.org or 216-421-8671
20. The Near West Theatre hosts sensory-friendly
performances for audiences. 6702 Detroit Ave., Gordon Square Arts District, Cleveland. nearwesttheatre.org or 216-961-9750
21. Porthouse Theatre offers accessible seating as well as
special arrangements for sight and/or hearing impaired guests. Golf cart service is available to transport guests to and from the parking lot. Hearing assistance devices can be rented through the box office at each performance. Audio description is offered for one performance per show every season. 3143 O’Neil Road, Cuyahoga Falls. kent.edu/porthouse or 330-672-3884
24.
Severance Hall has wheelchair-accessible and scooteraccessible seats, restrooms, drinking fountains, and elevators; wheelchairs for loan; wall signs in Braille; and large-print programs. Patrons also can borrow infrared assistive listening devices, and request interpretive services with advance reservations. 11001 Euclid Ave., University Circle, Cleveland. clevelandorchestra.com or 216-231-1111
25. Stan Hywet Hall & Gardens has wheelchair accessible
gardens, conservatory, and gate lodge, as well as the first floor of the Manor House. Tram service is available upon request. 714 N. Portage Path, Akron. stanhywet.org or 330-836-5533
26. Talespinner Children’s Theatre offers fully produced,
stand-alone sensory-friendly productions that work with and support families and kids in the Cleveland area with special or extra needs. These productions include enhanced experiences for one and all, with extra support for audience members with sensory, sight, hearing, physical and developmental needs. 5209 Detroit Ave., Cleveland. talespinnerchildrenstheatre.org or 216-264-9680
27. West Side Market has dozens of ground-level vendors
and a wheelchair-accessible restroom near the Market Cafe. Service dogs are the only animals allowed inside the building. 1979 W. 25th St., Ohio City, Cleveland. westsidemarket.org or 216-664-3387
28. Western Reserve Historical Society’s Cleveland
History Center has wheelchairs available for loan. 10825 East Blvd., University Circle, Cleveland. wrhs.org or 216-721-5722
PHOTO COURTESY OF ROCK & ROLL HALL OF FAME AND MUSEUM
22. Rock & Roll Hall of Fame and Museum has elevators,
wheelchair-accessible seating, a limited number of wheelchairs for loan, large print exhibit materials and Braille guides, sign language interpreters with advance reservations, and motorized mobility scooters for rent. Families also can borrow weighted lap pads and sensory kits with noise-dampening headphones, fidget toys, communication cards and sunglasses. 1100 Rock and Roll Blvd., Cleveland. rockhall.com or 216-781-7625
23. Rocket Mortgage FieldHouse, formerly Quicken
Loans Arena, has elevators and automatic doors, Braille signs and concession menus, real-time captioning of public address announcements, amplification and hearing-aid compatible devices, wheelchair escorts upon request, and family restrooms. Families also can borrow weighted lap pads, or sensory bags containing noise-canceling headphones and fidget toys. A designated Sensory Room also is available for those who need a quiet space away from the events. 1 Center Court, Cleveland. rocketmortgagefieldhouse.com or 216-420-2000
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INCLUSIVE AMENIT IES listening headsets. 19 E. College St., Oberlin. clevelandcinemas.com or 440-774-3920.
30. Aurora Farms Premium Outlets
offers complimentary wheelchair rentals. 549 S. Chillicothe Road, Aurora. premiumoutlets. com/outlet/aurora-farms or 330-562-2000
31. Buehler’s Fresh Foods has a Carolyn’s Cart, a shopping cart with a seat for a person with special needs. 3540 Burbank Road, Wooster. buehlers.com or 330-345-5908
32. Capitol Theatre has wheelchair-
accessible seats and restrooms and assisted listening devices. 1390 W. 65th St., Cleveland. clevelandcinemas.com or 216-651-7295.
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33. Cedar Lee Theatre offers
closed captioning, assistive listening devices, and descriptive audio devices upon request. 2163 Lee Road, Cleveland Heights. clevelandcinemas.com or 216-321-5411
34. Chagrin Cinemas offers
closed captioning, assistive listening devices, and descriptive audio devices upon request. 8200 E. Washington St., Chagrin Falls. clevelandcinemas.com or 440-543-2022
35. Heinen’s grocery store
locations in three cities have a Carolyn’s Cart, a shopping cart with a built-in seat for a person with
special needs. 35980 Detroit Ave., Avon, 440-937-7660. 30849 Pinetree Road, Pepper Pike, 216-831-8300. 2180 S. Green Road, University Heights, 216382-4144. heinens.com
36. Mustard Seed Market & Cafe
locations have a Carolyn’s Cart, a shopping cart with a built-in seat for a person with special needs. 867 W. Market St., Akron, 330-434-7333. 3885 W. Market St., Akron, 330-666-7333. 6025 Kruse Drive, Solon, 440-519-3663. mustardseedmarket.com
37. Tower City Cinemas offers closed
captioning, assistive listening devices, and descriptive audio devices upon request. 230 W. Huron Road, Cleveland. clevelandcinemas.com or 216-621-1374
PHOTO COURTESY OF BUEHLER'S FRESH FOODS
29. Apollo Theatre offers assisted
ACCESSIBLE OUT DOORS Brian has been a student at Fieldstone Farm Therapeutic Riding Center since he was a young child and now he participates in the carriage driving program. Brian is all smiles as he drives the carriage with able-bodied whip and volunteer Dave Watkins.
38. Achievement Centers’ Camp Cheerful is Ohio’s first recreational camp for children with physical, developmental, and sensory disabilities, including a 10-week therapeutic horsemanship program. 15000 Cheerful Lane, Strongsville. achievementcenters.org/camp-cheerful or 440-238-6200
39. Akron Rotary Camp provides day, sibling,
overnight and weekend programs for ages 6 to adult. The Respite camp programs go throughout the year. 4460 Rex Lake Drive, Akron. akronymca.org/rotarycamp or 330-644‑4512
40. Akron Zoo has a wheelchair-accessible carousel and
train, staff trained in ways to be sensory inclusive, weighted lap pads and sensory bags with fidget toys, noise-canceling headphones, designated quiet zones for those who need to sit and regroup, and a map of headphone zones for noisy areas. Visitors also can request a golf cart with escort. 500 Edgewood Ave., Akron. akronzoo.org or 330-375-2550
41. Blossom Music Center has wheelchair-accessible seats
and restrooms, as well as trams and golf carts to take patrons from the parking lots to the performance center. 1145 W. Steels Corners Road, Cuyahoga Falls. clevelandorchestra.com or 330-920-8040.
42. Canal Park baseball stadium for the Akron RubberDucks has wheelchair-accessible seats, water fountains and restrooms. 300 S. Main St., Akron. milb.com/akron/ballpark or 330-253-5151
PHOTO: FRANK GWIRTZ
43. Cedar Point amusement park offers attendees with
special needs a Ride Boarding Pass that lets them avoid having to wait in regular lines. It also has ramps and alternate entrances. The park offers American Sign Language interpreters at some attractions, if requested in advance. 1 Cedar Point Drive, Sandusky. cedarpoint.com or 419-627-2350
44. Classic Park baseball stadium for the Lake County
Captains has wheelchair seating and restrooms. 35300 Vine St., Eastlake. captainsbaseball.com or 440-975-8085
45. Cleveland Catholic Charities’ Camp Christopher
offers overnight camping in accessible cabins, day camps, and respite programs on campgrounds with trails, zip lines, ropes courses, fishing, swimming, canoeing, and an archery course. 1930 N. Hametown Road, Akron. ccdocle.org/camp-christopher or 330-376-2267
46. Cleveland Metroparks Zoo rents wheelchairs, has free wheelchair-accessible trams and accessible family restrooms, and offers sensory bags with noise-canceling headphones, fidget toys and other tools. It also has designated quiet zones as well as a map of headphone zones where it might get noisy. 3900 Wildlife Way, Cleveland. clevelandmetroparks.com/zoo or 216-661-6500
47. Cuyahoga Valley National Park has wheelchair-
accessible trails, picnic shelters, visitor centers, and an accessible fishing pier at Horseshoe Pond. 15610 Vaughn Road, Brecksville. nps.gov/cuva or 330-657-2752
48. Cuyahoga Valley Scenic Railroad has a wheelchair-
accessible train car with a lift, but seating is limited and must be reserved in advance. 2325 Stine Road, Peninsula. cvsr.org or 800-468-4070
49. Edgewater Beach has a limited number of all-terrain beach-access wheelchairs. On lower Edgewater Park between the Memorial Shoreway (Route 2) and Lake Erie. clevelandmetroparks.com or 440-636-2036
50. Fairfax Elementary School received a grant to install a special playground swing to accommodate special needs children as well as a large rotating climber low enough for a child in a wheelchair to get into and lie down on as it spins. 3150 Fairfax Road, Cleveland Heights.
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ACCESSIBLE OUT DOORS Riding Center engages the therapeutic power of horses to discover and nurture abilities of individuals, families and communities. 16497 Snyder Road, Chagrin Falls. fieldstonefarmtrc.com or 440-708-0013
52. FirstEnergy Stadium
has wheelchair-accessible seats and restrooms; elevators and a mobility assistance team to help fans get to their seats; closedcaptioning and assistive listening devices; and comfort kits that include coloring books and crayons, noise-canceling headphones, sunglasses, fidget toys, weighted neck pillows and lap blankets. 100 Alfred Lerner Way, Cleveland. firstenergystadium.com or 440-891-5050
53. Holden Arboretum offers guided tram tours for people
with special needs. 9550 Sperry Road, Kirtland. holdenarb.org or 440-946-4400
54. Hopewell Culture National Historical Park has
wheelchair-accessible trails, restrooms, shelters, picnic tables, visitor center, and one all-terrain wheelchair available for loan. 16062 State Route 104, Chillicothe. nps.gov/hocu or 740-774-1126
55. Huntington Beach has a limited number of all-terrain
beach wheelchairs with two large balloon wheels and 360-degree casters for traveling across sand. On the shores of Lake Erie in Bay Village. clevelandmetroparks.com or 440-617-9898
56. Inclusive Playground at Hollstein Reservation
in the Lorain County Metro Parks offers a water play area, art wall, structured play area and natural play area, all designed for accessibility by all. 47160 Hollstein Drive, Amherst. metroparks.cc or 440-984-3470
57. Lake Metroparks Fairport Harbor Lakefront Park
features a T-shaped, wooden boardwalk that stretches from the parking lot to the beach and includes wooden benches and picnic tables. Programs can include an adaptive boat experience that includes paddling, sailing and powerboats. 301 Huntington Beach Drive, Fairport Harbor. lakemetroparks.com or 440-639-9972
60. LifeCenter Plus Health & Fitness
Center offers SPLASH swim lessons (swim, persevere, learn, achieve, socialize, and have fun) for children and teens with disabilities. It also has sensory-friendly nights where families can enjoy swimming, games and refreshments in an outdoor pool. 5133 Darrow Road, Hudson. lifecenterplus.com or 330-655-2377
61. Playground of Possibilities. Accessible for children with special needs. Adapted swings, ramps and other features. Playground of Possibilities at Bexley Park, Miramar Boulevard, South Euclid, cityofsoutheuclid.com 62. Preston’s H.O.P.E. Playground Park features a child-sized Imagination Village with make-believe houses connected by a raised walkway; play theater; sand area; and swings, tunnels, and slides for children. The Mandel JCC, 26001 S. Woodland Road, Beachwood. prestonshope.com 63. Progressive Field has wheelchair-accessible seats, water
fountains and private suites, as well as assistive listening devices and noise-canceling headphones for loan. 2401 Ontario St., Cleveland. mlb.com/indians/ballpark or 216-420-4487
64. SOAR (Stow Outdoor Accessible Recreation) Playground is
an integrated play area that is specifically designed to ensure that children of all abilities are able to play in a safe area. Silver Springs Park, 5027 Stow Road, Stow. stowohio.org
65. Solon Community Park has an accessible playground
with adapted swings, playground surface. Solon also has the Little Fields Playground, located adjacent to Diamond #9, at the end of the middle school parking lot. This ADA accessible playground has an elevated sandbox, swings, and other features. Solon Community Park, 6679 SOM Center Road, solonohio.org
66. Stanford House, a historic 1843 farmhouse in Cuyahoga
Valley National Park with room for 30, has an accessible bedroom with a private, attached bath. 6093 Stanford Road, Peninsula. conservancyforcvnp.org or 330-657-2909, ext. 130
58. Lake Metroparks offers adapted programs for people with
67. Summit Metro Parks has wheelchair-accessible walkways
59. Liberty Park Nature Center is wheelchair-accessible and
68. Villa Angela Beach has a limited number of all-terrain
disabilities, including Special Olympics sports, adaptive archery and boating, and earthworm watch. 11211 Spear Road, Concord Township. lakemetroparks.com or 440-358-7275
specially designed for those who have special needs. 9999 Liberty Road, Twinsburg. summitmetroparks.org or 330-487-0493
and restrooms, and is staffed by workers trained to help visitors with special needs. 975 Treaty Line Road, Akron. summitmetroparks.org or 330-865-8065 beach-access wheelchairs. At Euclid Creek Reservation in Cleveland. clevelandmetroparks.com or 216-296-4178
Do you have an inclusive offering for individuals with special needs? Email: wendy@livespecial.com to be added to LiveSpecial.com. Check out LiveSpecial.com for an ongoing list.
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PHOTO COURTESY OF PRESTON’S H.O.P.E. PLAYGROUND PARK
51. Fieldstone Farm Therapeutic
SENSORY-FRIENDLY OFFERINGS 69. Akron-Summit County Public Library, the
nation’s first certified sensory-inclusive library system, can accommodate visitors with sensory needs, with sensory bags and quiet zones at all 19 locations. The bags include noise-canceling headphones, weighted lap pads, fidget tools and cards for nonverbal communication. akronlibrary. org or 330-643-9000. Ellet Branch offers sensory-friendly storytimes, including books, bubbles, flannel boards, songs, movement, and play; 2470 E. Market St., Akron, services.akronlibrary.org, 330-784-2019. North Hill Branch offers sensory-friendly storytimes, including books, bubbles, flannel boards, songs, movement, and play; 183 E. Cuyahoga Falls Ave., Akron, services.akronlibrary.org or 330-535-9423.
70. AMC Ridge Park Square 8 offers sensory-friendly
screenings of select movies with lower volumes, house lights on, and the freedom to get up, dance, talk, walk around or sing. It also has closed-captioning, assistive listening, and audio description devices, and is wheelchairaccessible. 4788 Ridge Road, Brooklyn. amctheatres.com or 216-749-0260
71. Art Therapy Studio offers creative arts therapy
programs for individuals with special needs. 12200 Fairhill Road, Cleveland. arttherapystudio.org or 216-791-9303
72. Canton Palace Theatre has a Sensory Cinema
series with family restrooms and trained staff. It lowers the sound volume, dims the lights, and offers dietary sensitive concessions including gluten-free and dairy-free options. 605 Market Ave. N., Canton. cantonpalacetheatre.org or 330-454-8172
73. Chuck E. Cheese offers Sensory-Friendly Sundays
two hours before regular hours at participating locations, with less noise, fewer crowds, dimmed lights, a turned-down soundtrack and limited appearances by Chuck E. Participating locations are at chuckecheese.com
74. Lake 8 Movies Theatre offers sensory-friendly screenings of select movies. 588 W. Tuscarawas Ave., Barberton. lake8movies.com or 330-753-5253
75. Make Believe Family Fun Center has Mellow Monday Sensory Nights. 8303 Day Drive, Parma. makebelieveparma.com or 440-385-5500
76. Parma-Snow Branch of the Cuyahoga County
Public Library shows sensory-friendly movies. 2121 Snow Road, Parma. cuyahogalibrary.org or 216-661-4240.
77. Regal Cinema Willoughby Commons offers
sensory-friendly Saturday matinees with brighter lights and lower volumes, where audience members can sing, cry, dance, walk around or shout, at discounted ticket prices. 36655 Euclid Ave., Willoughby. regmovies.com or 844-462-7342
78. Sky Zone Trampoline Park offers sensory hours open jump with quieter, toned-down versions of jumping at two locations. 750 Alpha Drive, Highland Heights, 440-467-5867; 31500 Viking Pkwy., Westlake, 440-467-5867. skyzone.com
79. SkyMax Trampoline Arena offers open jumping for special needs visitors. 7585 Freedom Ave. NW, N. Canton. skymaxarena.com or 330-966-4503
PARENTS' NIGHT OUT
Need respite services? Here are some places that can help. Church of the Saviour offers supervised Breathe Respite evenings for children with special needs and their siblings to give their families a few hours for themselves. 2537 Lee Road, Cleveland Heights. chsaviour.org/children or 216-321-8880 Grace Church in Akron offers a supervised VIP Night Out for parents of special needs children. 754 Ghent Road, Akron. bath.gracechurches.org or 330-666-8341 Grace Church Middleburg Heights offers a Take-aBreak respite program for
special needs children to give their families a few hours for themselves. 7393 Pearl Road, Middleburg Heights. gracecma.org or 440-243-4885 Holy Angels Church offers supervised Breathe Respite evenings for children with special needs and their siblings to give their families a few hours for themselves. 18205 Chillicothe Road, Bainbridge. holyangelschurch.com or 440-708-0000 OndeCare offers on-demand, part-time and short-term infant care, childcare, care for kids with special
needs, and elder care from caregivers who are screened, background-checked and trained to work with special needs children. 34 S. Main St., Chagrin Falls. ondecare.com or 234-567-8911 Royal Redeemer Lutheran Church offers a Buddy Break for families of special needs children ages 16 and younger and their siblings. 11680 Royalton Road, North Royalton. royred.org or 440- 237-7988 Strongsville United Methodist Church has a supervised ReCharge Respite Ministry for families of special needs children. 13500
Royalton Road, Strongsville. strongsvilleumc.org or 440-238-6135 Trinity Evangelical United Methodist Church offers a Buddy Break for families of special needs children and their siblings. 108 Malabar Drive, Upper Sandusky. mytrinity.us or 419-294-1535 United Methodist Church of Brook Park offers Partners in Rhyme program with music, fun and snacks for those with special needs. 6220 Smith Road, Brook Park. umcbp.webs.com or 216-676-4738
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PROGRAMS AND RESOURCES sports programs including skiing, handcycling, kayaking and canoeing. 3trackers.org
81.
Access Jewish Cleveland offers programs, resources and support to help Jewish community members with disabilities and their families fulfill their spiritual, cultural, religious and recreational needs. accessjewishcleveland.org or 216-292-4636
82.
Beyond Our Boundaries. For adults with special needs looking to travel and meet new friends. This organization provides opportunities to go to fun community places, along with the help of chaperones. beyondourboundaries.com or 330-455-8111
83.
Cafe O’Play features an indoor play area that is located on a single floor with no steps or barriers to movement. The play structure has activities that are accessible, however, some children may need assistance in navigating the structure. An adult caregiver could accompany a child through the structure, if needed. 911 Graham Road, Ste. 27, Stow. cafeoplay.com or 330-928-7517
84. The Center for Applied Drama and Autism (CADA)
provides drama classes on Saturdays throughout the school year for youth ages 8-18 with autism and other special needs. Its classes are designed to encourage collaboration, curiosity and creativity in a fun and supportive environment. 1501 S Hawkins Ave., Akron, centerforada.org/classes.html
85.
Cleveland Clinic Pediatric Aquatic Therapy. Therapeutic pool is temperature controlled at a warm 92 degrees and is adapted with railings, short steps and a chair lift. Community program swims are offered. my.clevelandclinic.org/pediatrics/ departments/aquatic-therapy or 216-448-6150
90.
Friendship Circle of Cleveland is a nonprofit that strives to create meaningful relationships and friendships between teen volunteers and children with special needs, redefining worldviews for both parties. 27900 Gates Mills Blvd., Pepper Pike. friendshipcircle.org or friendscleveland.com or 216-377-3000
91.
Gigi’s Playhouse offers therapeutic and educational programs for individuals with Down syndrome to advance literacy, math skills, motor skills and more, all free of charge to families. 15316 Detroit Ave., Lakewood. gigisplayhouse.org/cleveland or 216-529-3333; 4061 Bradley Circle NW, Canton, gigisplayhouse. org/canton 330-493-9114
92.
Hattie Larlham offers medical, residential, recreational and work training services for people with intellectual and developmental disabilities. 9772 Diagonal Road, Mantua. hattielarlham.org or 800-233-8611
93.
Inspiration Dance Academy’s adaptive dance classes are designed by a physical therapist who creates adaptations based on each dancers’ needs. Locations around the Greater Cleveland area. inspirationsdance.org or 440-783-6211
94. Lake Metroparks FarmPark has accessible amenities including ramps where everyone can enjoy the park. 8800 Euclid Chardon Road (Rt.6), Kirtland. lakemetroparks.com/parks-trails/farmpark
95.
Jewish Community Center (JCC) in Beachwood offers fitness & training swimming for all ages, camps, children/teen programs and Preston’s H.O.P.E. Playground. 26001 S. Woodland Road, Beachwood, 216831-0700. JewishCommunity Center in Akron offers swimming for all ages, social opportunities and fitness. 750 White Pond Drive, Akron, 330-867-7850
96. Miracle League provides adaptive baseball leagues for people with special needs. Visit miracleleagueoflakecounty.org for the park and playground at Lake Health Miracle Field Lubrizol Miracle League Playground, 35200 Vine St., Eastlake. Or go to miracleleagueofnortheastohio. com for the Medina Lions Field at Sam Masi Park, 812 Gates Mills Blvd., Medina.
86.
Cleveland Sight Center Recreation and Social Activities. The center provides various social groups such as book clubs, bike and hike, and more recreational and leisure opportunities. It promotes independence for those who are blind or have low vision. 1909 E. 101st St., Cleveland. clevelandsightcenter.org or 216-791-8118
87.
Connecting for Kids Family Outings. Connect with other CFK families through CFK-sponsored outings throughout the year. Outings offer casual, social opportunities for families to get to know each other and enjoy time in a social setting. Also, enjoy their other familycentered programming. connectingforkids.org
88.
Dancing Wheels Company & School works to educate, advocate and entertain with compelling, innovative dances uniting people of all abilities. 3030 Euclid Ave., Ste. 100, Cleveland. dancingwheels.org or 216-432-0306
89.
Erin’s World by Specs4Us is a line of custom eyeglass frames with low nasal bridges and extra-wide frame fronts to fit the features of children and adults with Down syndrome, 87 percent of whom need glasses by the time they start preschool. 14585 E. Park St., Burton. specs4us.com or 800-586-1885
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97.
The Music Settlement strives to create an inclusive community where artistic expression belongs to everyone who seeks personal growth through the arts. It offers early childhood education, music therapy, music-based education, and instruction to students of all ages, backgrounds and abilities. 11125 Magnolia Drive, Cleveland. themusicsettlement.org or 216-421-5806
98.
United Methodist Church of Brook Park offers Partners in Rhyme program with music, fun and snacks for those with special needs. 6220 Smith Road, Brook Park. umcbp.webs.com or 216-676-4738
99.
W.A.G.S. (Working Animals Giving Service) for Kids aims to provide service animals to children with disabilities in Northeast Ohio. 112 E. Center St., Berea. wags4kids.org or 216-586-5853.
100.
W-E Toy Play Library. The Willoughby-Eastlake Public Library worked with RePlay for Kids, a 501c3 nonprofit organization of volunteers who repair and adapt toys and assistive devices for children with disabilities in Northeast Ohio. Check out toys at the Willowick and Willoughby libraries. we247.org/weplay
PHOTO COURTESY OF THE MUSIC SETTLEMENT
80. 3 Trackers of Ohio promotes adaptive recreational
Family Matters
Inclusive Opportunities Found at Parks
P
arks and beaches let people of all abilities get outside and explore nature. It’s important for individuals with special needs to have inclusive and accessible opportunities to engage in the activities a park system offers. Cleveland Metroparks is one area park system that is providing outdoor accessibility and programming. “It’s important to get people out in nature — getting them to turn off their (electronics) and experience something new,” says Greg Headley, ADA coordinator at Cleveland Metroparks.
“Accessibility and inclusion are for everyone. There has been a lot of improvement as a (park) community to help improve all services.” Headley points to improvements such as beach access mats, paratransit drop-off and pick-up locations, accessible restrooms and seating, hard surface trails and adaptive programming. “We have an inclusive recreation specialist to develop programs for people with disabilities,” Headley says, adding options include handcycling, fishing, snowshoeing, general outdoor living skills and camping.
Cleveland Metroparks Zoo was recognized this past spring as a sensory inclusive organization after partnering with national leader KultureCity. The official certification recognized the zoo for its initiative in ensuring all its events and programs offer tools and information for guests with sensory needs. The zoo has designated six quiet zones with signage where guests can get away from loud noises. It also has made sensory bags available containing optional identification cards, fidget tools and noise reducing headphones. In addition to the quiet zones, the accessibility map denotes nine “headphone zones” where loud noises are present.
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People
to
Know
These individuals and families provide support and beyond for the special needs community By Lindsey Geiss
Kourageous Kylin Santana (superhero image by Artist Josh Lusby)
Superheroes Serving Children
C
leveland is the birthplace of Superman (1932) and home to two nonprofits with superhero-size missions to spread joy to children facing adversity across Northeast Ohio and beyond. Lisa Kollins, of South Russell, founded The Superhero Project after nine years as a program specialist at Camp Sunrise, which until its final summer in 2018, was the only camp in Ohio serving youth touched by HIV/AIDS. A culminating project allowed campers to work with artists to design their own superheroes. Through that process, she realized the emotional impact of seeing your inner hero come to life and wanted it to continue. Volunteer “Sidekicks” interview children facing critical illnesses or disabilities to discover their superhero alter-egos — what they stand for, who they fight for, and how they make the world a better place. Each child is
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matched with a professional artist who brings the character to life, and families are delivered a poster (and digital file) to treasure. “I consider it an honor and privilege to get to know these children,” Kollins says. Lorain resident Sarah Santana is the mother of 5-year-old Kylin, who had his superhero alter-ego created by Columbus-based artist Josh Lusby. The artwork, “Kourageous Kylin, Dravet Syndrome Warrior,” shows Kylin as a superhero with a “Super Smile,” along with his sidekick big brother Wise Wesley. “Our family finds the artwork truly inspirational,” Santana says. “The image hangs on our wall as a source of strength and hope through Kylin’s smile, which has persisted through every hardship. “During the interview process, we got the chance to actualize qualities that represent Kylin,” she says. “This alone was exciting, because as a special needs mom, we spend most of our days advocating for our children. Dravet Syndrome (a type of epilepsy), has taken so much away from Kylin, but this project was giving back. This organization inspires
children to let their differences electrify their inner superhero rather than define their lives.” The Project has created superheroes for 200 children to date, and the artwork reflects the diversity of the children themselves. Representation is important to Kollins, who serves as administrator of the Social Justice Institute at Case Western Reserve University. “People become marginalized for lots of reasons, including race, class and level of ability,” she says. “Seeing others who are like them is empowering. Another wonderful outcome of this effort has been creating a pantheon of superheroes of color. There are few in pop culture, so it’s lovely seeing African American, Latino, Native American and Arab American superheroes. That inclusivity is really special. “A project is now in the works to create an exhibit of these images in area libraries and community centers,” Kollins adds. “It is important for all children to be viewed as people of agency with the power to make the world a better place.” Most children connect with the organization through its partnership with the Angie Fowler Adolescent and Young Adult Cancer Institute at University Hospitals Rainbow Babies & Children’s in Cleveland or other Northeast Ohio organizations, including Youth Challenge adaptive sports and recreation activities. However, The Superhero Project works with families anywhere and has even interviewed children in the UK and partnered with an artist in Australia. Interviews may be done inperson locally, or by phone or email. If you would like to have a design created for a child you know — or if you are a professional artist looking to create joy for a child — email sidekicksohio@gmail.com or visit sidekicksohio.org for more information.
R
ocky River Middle School science teacher and North Ridgeville resident Brian Chulik — or Batman, as he is known when in costume — began visiting children in hospitals in 2010 after a ruptured appendix nearly took his life and required an extended hospital stay. His friends Scott Smith and Jimmy Myers joined him in costume, and from that experience, Super Heroes to Kids in Ohio was born. Chulik and his team of nearly 90 volunteers — whom he credits as the lifeblood of the organization — make costumed superhero and princess visits to children’s hospitals, special needs centers and charitable events across Northeast Ohio. Their goal is to spread goodwill and smiles through simple acts of kindness, recognize individuals who have battled adversity, and encourage involvement of the community to make a positive difference in the lives of others, especially children. The group has performed over 700 visits since 2010 and averages 120 events a year, from private events and hospital appearances to charitable “wish” organizations and visits to public venues. Costumed characters will appear at the organization’s second annual Golf Outing Fundraiser and a Baseball Superhero Day, along with the group's trademark event where 20 Brian Chulik and Maxwell “Super Max” Peppers children overcoming adversity save the city from villains of comic book lore. In addition, the organization sponsors a room annually at The Ronald McDonald House of Cleveland to help defer lodging costs for families during medical treatment. “As the Spider-Man franchise is often quoted, ‘with great power comes great responsibility,’” Chulik says. “One of the greatest rewards we receive is when a family contacts us to let us know that we made a small impact in helping them forget about an illness, or overcome a bad day. That is why we all do what we do. This mission is important to all of us because we are in a position to help others, and we take that very seriously.” As co-founder Myers says, “The kids are the real heroes.” For event information, or to schedule an appearance or volunteer, visit superheroestokidsinohio.org.
Leading Healthy Lifestyles
T
ony and Jacob D’Orazio, of Strongsville, are a dynamic father-son duo. As a fitness enthusiast and former college and semi-pro athlete, Tony D’Orazio instilled in Jake the importance of physical activity early on. Eighteenyear-old Jake, who has Down syndrome, began swimming with his mom, Karen, as an infant, played Little League Challenger Division baseball and wrestled on his Strongsville High School team. He enjoys working out to “Rocky” movies and participating in Special Olympics track, swimming and basketball. Tony D’Orazio launched Jacob’s Ladder Fitness, a faith-based nonprofit, with his oldest son, Ray Erker, three years ago to increase the health and fitness level of the special needs community through regular exercise classes and nutrition education. What began as a single exercise group at Grace Church has expanded into weekly 45-minute to hour-long fitness classes at three locations — Avon, Kirtland and Strongsville. Participants are children and adults ranging in age from 10 to 55, with some attending as young as age 4. Many are Special Olympic athletes, and others are parents attending with their children. Beyond the health benefits, participants learn how to listen and follow instructions, work in a group, develop social skills, build friendships and practice responsibility. D’Orazio, his son Jake and volunteer instructors cater to the participants’ abilities and have received training in autism fitness to support the many participants who are on the spectrum. The organization is a true family affair, with several extended family members serving on the board or running classes as teachers and coaches. Their core values are teamwork, fellowship and encouragement. D’Orazio credits his mother and father for starting it all, saying, “My parents faithfully served people as part of their Christian Walk,” often welcoming people in need into their home. His prior work with troubled youth at Saint Anthony’s Home for Boys at Parmadale, and his current job assisting employers in the return to work process following disability, share this common thread of helping others. He stresses the guiding principle of raising expectations to realize our ability. “Through my research and travels, I learned from fitness educators and experts that the single biggest thing that holds these kids back is when we don’t expect enough,” he says. “I don’t limit expectations or treat them any differently.” He approaches coaching with respect and love, measuring progress while motivating “his kids” who are like family, but not without some humor. “When Jake was about 10, I told him, ‘You have to be able to throw a football to live in this house,’” he says. Jake now plays in the Cleveland Browns Adapted Football League, in addition to leading fitness classes alongside his father. After graduation from Strongsville High School, Jake will continue vocational training at Polaris. He wants to be a firefighter or personal trainer and work with those in the special needs community. For information on fitness classes or to volunteer, visit jacobsladderfitness.com or contact Tony D’Orazio at tdorazio@att.net or 440-225-2365.
Tony and Jacob D’Orazio
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Shedrick Jordan and Michael Blackman at MetroHealth System
M
etroHealth’s Food and Nutrition Services Department has a program to train adults with developmental disabilities to work in the hospital’s kitchen as interns. Individuals who perform well during the yearlong internship are hired for permanent positions. Since the program began in 2014, Food and Nutrition Services has hired five individuals from the training program, and there currently are two interns. The Environmental Services Department employs four individuals
Providing An Oasis For Moms of Kids with Special Needs
J
ane Cawley is a mother of three and grammie to seven. She joined her local La Leche League as a young mother and remained active in the organization for eight years, becoming a leader. She always enjoyed connecting with and supporting new moms, so after she retired from her accounting career in 2009, she began hosting lunch meetings at her LaGrange home for women with babies and young children to discuss various topics. Then, the birth of her precious granddaughter, Meghan, brought new perspective on the joys and challenges of motherhood. Meghan was born medically fragile with hydrocephalus and bones missing in her spine, requiring multiple surgeries. While assisting her daughterin-law, Sarah, with doctor and therapy visits, she became acquainted with other moms advocating for their children. Cawley’s purpose was renewed. “I was looking for what’s next in life and did a lot of praying to find my passion, then woke up in the middle of the night and knew it was the special
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from the program (two full-time and two part-time). For this training program, MetroHealth earned an Employer Partners of Inclusion Award from Opportunities for Ohioans with Disabilities in 2018 and an Inclusion Award from the Cuyahoga County Board of Developmental Disabilities (CCBDD) in 2015, in addition to praise for expecting the same high standards for all employees while conveying dignity and respect. MetroHealth has been recognized for training and hiring individuals with developmental disabilities into competitive, integrated jobs, which supports Ohio’s Employment First initiative, a national movement prioritizing community employment for people with developmental disabilities. Shedrick Jordan, of Cleveland, was the program’s first intern in 2014, and he remains a valued employee. Michael Blackman, meal service systems manager, Food and Nutrition Services Department, supervises Shedrick. As a porter in the main kitchen, Shedrick supports patient food production operations. Responsibilities include loading and transporting food carts, sanitizing equipment, recycling, and cleaning the kitchen. “I stop what I am doing to help
needs moms,” she says. “All these ideas came to mind. I ran into the office to write down what I could do to meet their needs and started discussing it with my core group of moms.” Shepherd’s Well provides a refreshing oasis amidst the challenging demands of mothering a child with special needs and different abilities. A special division of Hopewood Retreat Ministries, the organization has a seven-person advisory board with an event planner and chef, nearly 20 volunteers, and runs purely on donations. Five annual gatherings at Strongsville Bible Fellowship feature a delicious hot buffet lunch, fine crafts and selfcare services including massages, simple manicures, yoga/exercise and a relaxation room to unwind. Occasionally, speakers present at sitdown meals, but programs are usually structured to allow as many as 60 moms to come and go as they please during a school day. Prayer warriors also are on hand to partner with moms who are interested in faith-based support. Cawley understands many mothers experience loneliness, exhaustion, discouragement, anxiety and grief, especially after receiving a diagnosis. “Moms put all their energy into their children and are emptied out,” she says. “We provide nourishment for the mind, body and spirit.” Cawley’s vision for the future includes
Jane Cawley (top left) with her daughter-in-law, Sarah Cawley (center left), granddaughters Meghan (center right) and Addie (bottom left), and Meghan’s nurse, Tessa (right)
programming for couples and fathers of special needs children, along with church services for families who benefit from a more relaxed environment. Meghan, now 7, is thriving and continues to be an inspiration for the family. Cawley encourages other grandparents to invest their time, experience and love with their grandkids. “If they are able and available, grandparents can bring so much to the lives of their grandchildren,” she says. “To help, encourage and support them — especially to give mom and dad opportunities to re-fill their tanks — lessens some of the burden special needs parents carry, and the bond that can develop between grandparent and grandchild is priceless.” For more information, including event details and testimonials, visit shepherdswell.org or email theshepherdswell@gmail.com.
PHOTO SUBMITTED BY METROHEALTH
Shifting Expectations and Empowering Employees
wherever I am needed,” Shedrick says. “Shedrick has had five years of growth with the facility,” Blackmam says. “He has done well here — he always has a smile on his face, he is dedicated and anxious to train new interns to make sure they do the job correctly. When Shedrick arrives, he is happy and it encourages the rest of the team to follow suit.” Shedrick, who previously worked at House of Blues and Dave’s Supermarket, says, “The job is challenging, but I reach somebody new every day.” When asked what he enjoys most, he says, “I get to get up every morning and come to work. I like the routine.” Kathy Histed, operations manager, Environmental Services Department, also praises the program’s positive impact. “Employees have shared ways of doing things better,” she says. The individuals employed on her team share similar responsibilities, but given their direct contact with patients, she stresses the importance of matching employees with locations (based on skill set, etc.) to strategically align the patient care experience. In addition, MetroHealth helps prepare Cleveland Metropolitan School District high school students with special needs for future careers by offering food service
training. Students visit once or twice a week to gain hands-on experience in hospital kitchen production. They can remain in the program until age 21. Then, based on their skills, they may enter the general workforce or participate in the CCBDD work program. Some individuals may eventually become Food and Nutrition Services interns, which can lead to employment at MetroHealth. “MetroHealth is committed to helping everyone, including those with developmental disabilities,“ says company spokesperson Tina Shaerban-Arundel. “Healthcare is so much more than just medical care, and by partnering with the CCBDD, providing job training and placement to those in need, we’re helping others thrive in society, and live fulfilling and meaningful lives.” To connect with Employment First resources for job seekers and families or employers in Ohio, visit www. ohioemploymentfirst.org. If you are an employer in Cuyahoga County in need of trained and talented employees, visit www.cuyahogabdd. org or contact the Employment Collaborative of Cuyahoga County at to post job openings and learn more about partnership opportunities: employmentcollaborative@ cuyahogabdd.org
Mothering A Village
PHOTO SUBMITTED BY RAMOS FAMILY
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Known as “Mama Yo Yo,” olanda “Yoli” Ramos is described she regularly gives rides as a “one-woman miracle in Lorain and brings refreshments County” for her work as a special needs to sporting events and has community resources liaison. She draws on proudly never missed a decades of experience as a single mother of home game for four Murray two sons (ages 32 and 19) with special needs — Ridge Raiders Basketball including autism, Type 1 diabetes and kidney teams. Her sons have been transplants, among other health issues — to involved with Murray Ridge offer advice, support and hope to families who Yolanda Ramos with sons Isaiah Center — the Lorain County need it most. (left) and Elijah Board of Developmental Ramos runs a Facebook page for families Disabilities — since early of individuals with special needs and is intervention after birth, always sharing resources, events and and she pledges her commitment to the organization. They supportive messages to help with everything from IEP attended the school and now participate in the Lorain County and Medicaid waiver advice to respite programming, Adult Workshop and group employment program, which offers addressing whatever questions they have. In addition to valuable work skills training and job coaching. volunteering with Lifebanc and Special Olympics, she is “Where we are at as a family, we are stable,” explains a self-employed independent provider certified by the Ramos, now years from the early uncertainties and hardships Ohio Department of Developmental Disabilities (DODD) after the diagnoses and almost losing one son to medical to provide services to individuals with developmental complications. “Now I attend every seminar and lecture I can disabilities. She has put her bilingual skills to use often, in the community. My goal, personally, is to educate others and from her early career days as the first female dispatcher in be that mom others can turn to. the Lorain Police Department until now. “I’m not going to be here forever,” she continues. “I hope “When I was young, I was told I would never have there is that one mom who out of the corner of her eye is children,” Ramos recalls. “I know God gave me both of my watching my kids, and that is who I try to be for others. I pray that boys so many years apart for a reason.” we as a community look out for one another. It takes a village, She enjoys helping her clients thrive and surpass and we are our own village in the special needs community.” the expectations others had set for them, by living To connect with resources, visit the Lorain County Special independently, for example. “I make sure they get the care Needs Resource Page on Facebook or email Yolanda Ramos at they need,” she says. “In any situation in life, the main thing snglma2@yahoo.com. To learn more about Murray Ridge Center is I’m a mom first, and I’ll never stop being a mom. They are program offerings, visit murrayridgecenter.org. all my kids to me.” livespecial.com 2019-20
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alina Miller, of Maple Heights, is on a mission to make special needs resources accessible to all mothers. She is the mother of two sons: Eric, 19, and 14-yearold Elijah, who has autism and multiple other diagnoses, including epilepsy and congenital glaucoma with vision impairment. Elijah has been the driving force behind her organization, Mother 2 Mother. “I didn’t know a lot of people and never went out to seek assistance,” she recalls. “I figured it out on my own, then realized that if I am struggling, others may be, too.” Two years ago, she organized a small support group for mothers with a ministry leader she worked with at The Word Church. This group grew Elijah and Salina Miller into Mother 2 Mother, a support, education and empowerment organization for mothers of children with special needs. Miller saw a need for greater awareness and education in the communities around her and felt compelled to act. “When low income families just want to make it day to day, special needs support takes a backseat to providing food and shelter,” she says. “I let them know there are services available and help them navigate (these options).” Mother 2 Mother hosts free monthly support meetings for coffee and conversation, networking and training with expert guest speakers on topics ranging from financial planning to stranger safety. Meetings take place at three locations: Warrensville Heights, Cleveland and Lakewood, the last of which offers child care. “We create a safe place to share with no judgement or barriers,” Miller says. “I always tell mothers, ‘You are not alone,’ and work to empower them with information and tools, so they don’t feel intimidated or afraid walking into an IEP meeting, for example.” She also organizes family-friendly outings to zoos, museum sensory-friendly days, Amish country, and even a vacation to Florida. She is now working to grow the group’s Art-tism program, which offers regular art and craft opportunities for a small fee. “Mother 2 Mother has brought life to me and Elijah,” Miller says. “We never got out to meet others on the same journey. I worried about a lot, like Elijah bolting, and it was an isolation period. Because of these women, we have become more active, and Elijah has opened up and made friends. We call ourselves a family.” In addition to her work with Mother 2 Mother, Miller also is a parent representative on Ohio’s State Support Team 3, parent involvement specialist for Warrensville Middle School, and a member of University Hospitals Rainbow Babies & Children’s Hospital Patient & Family Partnership Council. She is a recipient of the National Nurses Coalition Unsung Heroes Award. To connect with Mother 2 Mother, attend meetings or volunteer, visit mother2mother.info, email contact@ mother2mother.info or find the group on Facebook.
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Making A Difference In The Lives Of Super Moms
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other of three Ebony Storrs, of Euclid, started journaling after an Ebony Storrs overwhelming day in 2016. “My husband was at work, and we were out of medicine,” she recalls. “In a rush to get it, my car got stuck in a mountain of snow at the end of our driveway. I got out and somehow locked my keys, phone and kids inside. My newborn had pushed out of the car seat and my daughter was having a meltdown, so I feared for their safety. I was in a panic and felt like the worst mother, but in that moment with adrenaline going, jumping over snow piles and running to neighbors’ houses, I felt like I was flying for my kids, doing anything I could for them.” Her writings after that experience became the foundation for her nonprofit, SuperMoms Association, Inc. “I felt so overwhelmed and stressed, but my pastor told me, ‘You are amazing Supermom. Use your cape as your mantel to tell God what you need.’ So I did.” Storrs had a vision to provide support, resources and respite for mothers of children with special needs. Her own experiences having three premature babies, one with a chronic lung disease and two with autism spectrum disorder (one of whom is nonverbal), inspire and drive her efforts. “We as moms are typically the caregivers in the community, and everything falls on us,” Storrs says. “Yes, we have Mother’s Day, but we are a forgotten community. We don’t get the attention we should, and we don’t care for ourselves. We are the last and the leftover.” SuperMoms Association puts mothers of children with special needs first by creating a sense of belonging and caring for those who may feel isolated or lack support. After serving in the military, Storrs earned a business degree and event planning certification, which she draws on to organize the SuperMoms Association’s programming and events, including the elaborate annual Mother’s Day Spa & Brunch held at The Salon Professional Academy in Mayfield Heights, as well as self-care packages and other local events. One of the first projects she organized was a collection of new beds for a single mother plagued by bed bugs and a double stroller for a mother with a child who wandered. Now, she and her five board members are planning a backto-school focused gathering to share ETR, IEP and related resources, and there are plans to launch monthly raffles of massages or other self-care offerings. Storrs leads efforts to collect sponsorships and other donations to fund her mission and directly support mothers in the community, so “they don’t have to do it all alone.” To connect with SuperMoms and access resources, visit supermomsassociation.org, email supermomsassociation@gmail.com or call 216-202-9673.
LEFT PHOTO: JESSIE STEIMLE PHOTOGRAPHY
Crusading To Raise Awareness
Supporting Families With Food Allergies
PHOTO BY JULES WHITE PHOTOGRAPHY
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r. Abigail Glick leads the Northeast Ohio Food Allergy Network (NEOFAN), a FARE (Food Allergy Research and Education) Recognized Support Group with a mission to minimize the impact of food allergies in families’ lives through support, education, research and advocacy. Glick is a passionate food allergy advocate who offers a unique dual perspective as both a medical professional and a parent of children with food allergies and eosinophilic esophagitis (EoE), a chronic, allergic inflammatory disease of the esophagus. “Self-advocacy is an important topic addressed in our programming, but young children and others who are nonverbal rely on parents, teachers and others to advocate for them,” cautions Glick. “It becomes even more critical to know how to identify and properly respond to an allergic reaction when someone is unable to describe how they feel.”
Dr. Abigail Glick and her family
“It’s important for families living with food allergies to feel safe, included and supported,” Glick says. “Food allergy is not a diet or lifestyle choice — it’s a serious disease, and inclusion matters.” This year, NEOFAN honored its first Teal Hero Award recipient, 13-yearold Charlie Kaufman, of Pepper Pike, for embodying its mission. Growing up with multiple food allergies, he dedicated his mitzvah project to support local food allergy programming, including a NEOFANsponsored book on food allergy bullying and NEOFAN’s Teens for Teal, which provides opportunities for teenagers to meet and learn from one another with guidance from an allergist
and psychologist. NEOFAN partners with organizations and allergy specialists in the community to spread awareness and promote inclusion through educational programming and special events, NEOFAN’s Community School Education and Training Program with University Hospitals Rainbow Babies & Children’s Hospital has partnered with more than 100 schools and school nurses, and numerous camps across the region to date. Given 15 percent of children with food allergies have a reaction in school, Glick would like to engage even more schools and camps in the program. Her vision for the future also includes expanding the training program for restaurants and sports venues to make it safer for people with food allergies to eat out, in hopes that Ohio will someday follow the lead of states like Massachusetts and Michigan to enact restaurant legislation to improve food allergy awareness and safety. To connect with NEOFAN resources and events, register for a training program, or volunteer, visit neofan.org and facebook.com/neofan.org or email info@neofan.org.
THANK YOU TO THE 1,200-PLUS PROVIDERS FOR YOUR SUPPORT AND SERVICE TO OUR COMMUNITY. To join the LiveSpecial community, contact wendy@livespecial.com
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Family Matters
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The Importance of Person First Language
ords are powerful. They shape the way we view our world. Similarly, the way we describe a person can either empower them or take power from them. This is especially true when talking about disabilities. It is important to think about how you phrase things when talking about disabilities or people with disabilities. Person first language is a respectful way to put the focus on the person, and not their disability. People with disabilities are just that — people. Plain and simple. They are men, women and children. They are friends, neighbors, colleagues and family. Each person is unique and has their own talents. A disability does not define WHO they are, but rather, it is one aspect of them — and possibly the smallest part of who they really are. When a person with a disability is defined primarily by their disability, it creates a negative stereotype, or possibly a barrier. That’s why it’s important to remember that a disability is not an identity. Person first language puts the person first. It is a respectful way of talking or writing about people with disabilities. Person first language is a way to speak that makes the person the focus. FOR EXAMPLE Correct: My son’s best friend, Andrew, has autism. Incorrect: My son’s best friend, Andrew, is autistic. Correct: Ms. Smith uses a wheelchair. Incorrect: Ms. Smith is confined to a wheelchair. Correct: I am an advocate for people with disabilities. Incorrect: I am an advocate for the disabled.
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These changes may seem small, but they are powerful. By choosing the right words to talk about disabilities and those who have disabilities, you can help change attitudes and beliefs. Most importantly, you can put the emphasis back on the person rather than their disability. Discover stories, tips and information that will change your view of abilities at summitdd.org.
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Just Try It
Inclusive Play Provides Experience on Stage By Angela Gartner
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PHOTOS SUBMITTED BY ELAINE EISNER GOHN
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en-year-old Alana Gohn was all smiles during her performance in “The Wizard of Oz” — playing various roles, including a munchkin — at the St. Joan of Arc School in Chagrin Falls. “There was a flyer in school about an upcoming play that includes children who have special needs,” says her mother, Elaine Eisner Gohn. “We knew Alana loved music.” After attending a couple meetings, the Gohns thought it might be a good experience for Alana, who was diagnosed with microcephaly as an infant. “It was amazing,” Eisner Gohn says, adding that the play allowed her daughter to have an after school activity. “She had to learn a dance routine with her peer mentor. She was so happy because it was all music and dance.” The St. Joan of Arc School and Chagrin Valley Little Theatre Penguin Project is one chapter of many across the U.S. that provide opportunities for those with special needs to participate in a community theater experience with their age level peers. The program had regular rehearsals after school during the winter before the performances in spring. According to the St. Joan of Arc School, the project was open to individuals with special needs from ages 8 to 22. It also utilized a “peer mentor” system, linking each young artist with an age-level peer in grades fifth through 12th. The peer mentors worked side-by-side with their partners, assisting them throughout the entire rehearsal process and on stage for the modified version of the wellknown play, “The Wizard of Oz.” Eisner Gohn says the experience has definitely expanded Alana’s interests, including listening to different age-appropriate music and taking dance classes. Also, she says Alana experienced how to be patient, and that endurance was needed for the activities through the structured program. Eisner Gohn’s advice for other parents is just to try different things with your child. “‘Just try it,’ that’s our motto,” she says. “We have tried things that haven’t gone well, but you never know what’s going to work. Families have to take the opportunity to do something different.”
Planning
Transition Plans for Kids ‘Aging Out’ By Laurie G. Steiner, Esq., CELA
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hen you have a child with disabilities, you worry about so many things. While they are young, it is hard to get all the necessary planning in place. Some families are able to obtain assistance from the Developmental Disabilities board or other agencies, and some families seem to sit on waiting lists forever. However, there is a common problem for all: when your child ages out of special education programs. When a child is receiving services in a school setting under an IEP or a 504 Plan, the school is required to begin transition services when the child is 14, with a focus on the student’s course of study to make sure the classes will prepare the student for vocational school or other post-secondary education. The planning is addressed again at age 16, when the school must provide information about outside agencies that will assist the student. Some of the programs may require applications or more waiting lists, so it is best to start early. The school district of residence is the school responsible for providing the transition plan through the IEP team. Students with disabilities are entitled to attend school until graduation or age 22. However, the rights of the student transition from the parents to the student at age 18.
The student should be included in all the transition planning meetings if possible, and if not possible, the planning team must consider the wishes and best interests of the child. The transition services are based on the individual student’s needs, interests and preferences. They can include all types of supportive services to assist the student. If the school fails to provide proper transition planning as part of the IEP or 504 Plan, they are in violation of the law. A complaint should be filed with the special education director or a hearing can be requested in writing to the Ohio Department of Education. In addition to the educational changes, there are some legal matters to consider. Since the child is an adult at age 18, the parents no lon-
ger have control of the planning. If the child is unable to be personally responsible, a guardianship of the person might need to be established. If the child has competency to handle their personal affairs, then the parent should have the child sign a financial power of attorney and health care power of attorney so parents can assist the child. This also is the time for parents to update their own estate planning documents to provide protected trust funds for the lifetime of the child. Additionally, at age 18, the child should apply for Supplemental Security Income (SSI) because the parents’ income and assets are no longer deemed available to the child. The extra monthly income is important to help support the child. SSI also opens the door to obtaining Medicaid health coverage and case management, which is especially necessary if the child is no longer able to be covered by a parent’s health insurance. Your child’s transition from a student to an adult can be filled with joy. Consult a special needs attorney so that you know the timetables and rules during that time. Laurie G. Steiner, Esq., CELA, Solomon, Steiner & Peck, Ltd. 6105 Parkland Blvd., Ste. 140, Mayfield Heights, 216-765-0123, lsteiner@ssandplaw.com, ssandplaw.com
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Keep Safety Top of Mind Diving into the issues of human trafficking and safety in the community for people with special needs. By Angela Gartner
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ases of human trafficking are frequently seen in news reports in the region. Many of these cases in the media, and also in movies or TV shows, depict young women held against their will and forced into unthinkable acts. While this does happen, human trafficking has a more complex story — and people with special needs can be particularly vulnerable to these predators. Human trafficking is about control by force, fraud or coercion. Targets in these situations might not realize or recognize they are being abused, especially those individuals with special needs. Example: A woman or man with special needs is online to meet people — maybe due to isolation, loneliness, etc. They might meet someone who wants to know every detail of their personal information. That person might be secretive in deceiving the person with special needs, hiding details about themselves while lavishing them with attention, gifts and food in an attempt to gain their trust. The person with special needs may suddenly find themselves in a sexual relationship. The “boyfriend” or “girlfriend,” in an attempt to exert control, might isolate the person with special needs from their family or the people who care for them. They may ask them to perform uncomfortable acts such as have sex with others, participate in video sex acts or provide personal account details. The end result is that many individuals with
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special needs are unable to extricate themselves from these abusive and unequal relationships. BUILDING SUPPORTS According to Ohio’s human trafficking law, “No person shall knowingly recruit, lure, entice, isolate, harbor, transport, provide, obtain, or maintain...another person knowing that the person will be subjected to involuntary servitude or be compelled to engage in sexual activity. For a prosecution under division (A)(1) of this section, the element ‘compelled’ does not require that the compulsion be openly displayed or physically exerted. The element ‘compelled’ has been established if the state proves that the victim’s will was overcome by force, fear, duress, or intimidation, or fraud.” Many experts say more research is needed to see how people with special needs are impacted by human trafficking. It’s difficult to track — many cases go unreported and are not identified as human trafficking. The U.S. National Human Trafficking Hotline is a 24/7, confidential service that provides support and a variety of options for survivors of human trafficking to get connected to help and stay safe. Polaris, a nonprofit organization, reports that “from January 2015 to December 2017, the hotline has documented 2,116 potential victims that had a pre-existing health concern or disability immediately prior to their trafficking situation.
This includes a possible physical disability, mental health diagnosis, substance use concerns, or intellectual/ developmental disability.” “We are working with organizations, agencies, and businesses to educate people, raise awareness, and build a comprehensive and coordinated response in our region to address human trafficking. By empowering systems to work collaboratively those systems then create the change needed to assist and support victims,” says Winnifred Boylan, executive vice president of Collaborative to End Human Trafficking, which is a Northeast Ohio organization that began in 2007. AT-RISK COMMUNITY “I think it’s important that each individual case is unique,” says Katherine Antall, human sexuality specialist/psychology assistant at Cuyahoga Co. Board of Developmental Disabilities. “There is not a one-sizefits-all solution in the case of a traumainformed care approach.” There are cases that are not just about sex, but about money and stealing identities. In addition, women are not the only targets. “Love is such a powerful emotion,” Antall says. “Trafficking doesn’t discriminate against gender. A lot of times it does have to do with money — male clients will get taken advantage of, some with untraceable methods such as gift cards.” Boylan says people with special needs have an increased risk for trafficking due to factors such as
LINK TO FIRST RESPONDERS In October of 2017, the Cuyahoga County Board of Developmental Disabilities (CCBDD) created a Major Unusual Incidents (MUI) Community Liaison position. The position is designed to be a link and a resource to communities and first responders to aid in supporting individuals with intellectual disabilities and developmental disabilities who receive services through the CCBDD. The MUI Community Liaison responds and consults with local communities, first responders and city officials to address complaints and concerns regarding individuals living in the community. The MUI Community Liaison may be accessed directly by a person served, his/her family, a provider agency or through a support administrator. For more information, contact the CCBDD MUI Community Liaison at 216-736-2084. Source: David Nodge, MUI Community Liaison Cuyahoga County Board of Developmental Disabilities
isolation and a dependency on others, so they might be more likely to comply with demands or might not know how to object to unwanted touching, social discrimination, or not being believed. “We have to work together to lower the risk factors,” she says, adding it could be as simple as having dinner with those people with special needs to continue to know their outside relationships. “Stay engaged with them,” she says. “Communicate with them to see what’s going on and have those one-on-one conversations.” Also, look for red flags. According to Boylan, examples include a case where a victim doesn’t have control over their own documents; the boyfriend or girlfriend is too controlling about where they go or what they do; there is a change in behavior or dress; and there seems to be well-rehearsed lines or inconsistent stories. “In human trafficking, there is a grooming by a trafficker where the trafficker will find a vulnerability and leverage that (to his or her
RESOURCES AND SUPPORT • Cuyahoga County Regional Human Trafficking Task Force, 216-443-6085 • The Project STAR Hotline, 855-431-STAR (7827) • Collaborative to End Human Trafficking, collabtoendht.org
advantage),” Boylan says. Both Antall and Boylan say that loneliness plays a role and the internet makes it easier for traffickers to connect to victims. Antall says if there is a sudden increase in smartphone use or the person with special needs starts to become secretive‚ this could be a warning sign. RELATIONSHIPS MATTER Adults with special needs may make decisions that do not align with their caregivers. There may be arguments
over best interests from both parties. However, people with special needs and their caregivers, along with health professionals, have to be aware and educated about being at-risk for human trafficking. “A caregiver can’t feel they are solely responsible for the full safety of the person with developmental disabilities,” Antall says. “They also have the right to go out and live their life.” She notes the importance of education — not just about safety, but learning about healthy relationships and their own bodies. “Talk to them about what is a good, healthy relationship,” Antall says. “Also, communication is about what makes the person happy and fulfilled, not just what is convenient for the caregiver.” She adds that the person with special needs likely will have the same struggles with adolescence and hormones as other young adults their age. It’s important to recognize their needs and provide age-appropriate tools and information to keep them safe from abuse.
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SPECIAL ADVERTISER LISTINGS Achievement Centers for Children The Achievement Centers for Children’s mission is to empower children and adults with disabilities and their families to achieve their greatest potential. The agency provides comprehensive, high-quality programs and services in the areas of therapy, education, recreation and sports, and family support services to meet the needs of the entire family. 216-292-9700, achievementcenters.org Autism Speaks Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions. Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow. Call their Autism Response Team at 888288-4762 or visit autismspeaks.org for information and resources. In regards to Northeast Ohio events and contacts, please call 216-524-2842. Beck Center for the Arts Each participant in Beck Center’s Creative Arts Therapies program receives attention that is individualized with personally-designed goals tailored to meet his/her needs. Staffed by board certified arts therapists and professional adapted instructors, Beck Center’s program is the first of its kind in the state of Ohio. 216-521-2540 x34, beckcenter.org
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Beyond Words
Beyond Words: Music & Dance Center offers music therapy, adapted music lessons, adapted dance program, as well as summer camps for children with special needs and peer models. Beyond Words has studios in North Royalton, Medina, Avon, Independence and Highland Heights. Visit beyondwordscenter.org for registration or call 440-230-6100. Cleveland Hearing & Speech Center For nearly 100 years, Cleveland Hearing & Speech Center has been the premier provider of programs and services to those who are deaf or hard of hearing, have difficulty speaking, or have other language or literacy delays and disorders. Its vision is a community where every individual communicates effectively. chsc.org Cleveland Metroparks It’s time to explore Cleveland Metroparks. Discover trails to hike, bike or run. Experience the wonder of the animal kingdom at Cleveland Metroparks Zoo. Play any of 8 scenic golf courses throughout greater Cleveland. Dine on the river at Merwin’s Wharf. See the city like never before from the shores of Lake Erie. Take time to explore clevelandmetroparks.com. Cuyahoga County Board of Developmental Disabilities
The Cuyahoga County Board of Developmental Disabilities proudly supports and empowers people with developmental disabilities of all ages to live, learn, work and play in the community. For more information on services and resources, call 216-2418230 or visit cuyahogabdd.org. Eisner, Gohn Group
Eisner, Gohn Group is a leading resource for life insurance, long term care insurance and long term disability insurance. Its team has subject matter experts in each of these disciplines so it can craft and deliver the most cost effective and efficient plans for clients. 216-378-4500, eisnergohngroup.com
EPICENTER ABA Epicenter ABA prides itself on providing evidence-based Applied Behavior Analysis (ABA) services to children diagnosed with autism spectrum disorder. Mara Katz, MA, BCBA, COBA, founded Epicenter to provide services in the child’s home, school, community, and vocational environment. Epicenter professionals teach and encourage independence in the child’s own environment while assuring collaboration with parents and other professionals in the child’s life. 440421-9053, epicenteraba.com Friendship Circle of Cleveland Friendship Circle of Cleveland is dedicated to enhancing the lives of special children by connecting them with friends in a wide range of social and life-skills programs, providing families support through networking and respite, and enriching the lives of teenagers through their impacting the life of a child. Call 216377-3000 or visit friendscleveland.com. Hanna Perkins Center for Child Development Non-profit Hanna Perkins supports healthy emotional development in children through a range of services for children, parents, professionals and early childhood educators. The school serves toddlers through kindergarten and includes Epic Early Learning for children with autism spectrum disorders. Other services include a mental health clinic and parent support — all based on a nurturing, respectful approach that is well-suited to the unique social-emotional challenges you and your child may face. Hanna Perkins is a social-emotional provider for the Special Needs Child Care program from Cuyahoga County — Invest in Children. hannaperkins.org
SPECIAL ADVERTISER LISTINGS Julie Billiart Schools With campuses in Akron and Lyndhurst, Julie Billiart Schools understand that students learn best when their differences are understood and accepted. Its team of intervention specialists, therapists and support staff work collaboratively to offer a comprehensive academic and social learning environment for children in grades K-8 with autism, ADD/ADHD, and other specific learning needs. Rooted in the principles of the Sisters of Notre Dame, the schools welcome all faith traditions. juliebilliartschool.org
Milestones Autism Resources Milestones Autism Resources improves the lives of individuals on the autism spectrum by educating, coaching and connecting the autism community with evidence-based information. Providing an annual autism conference, a free helpdesk, consultations and training, and a website with over 1,400 resources, Milestones is here to support individuals at every age, stage and ability. For more information, visit milestones.org or call the free autism Helpdesk at 216-464-7600 ext. 200.
McFadden Bushnell McFadden Bushnell, a small law firm lead by two sisters who understand the value of family, focuses on special needs, elder law and estate planning services. Let the firm’s family help you and your family plan for your future, whatever your circumstances happen to be. mcfaddenbushnell.com
psi Affiliates, Inc.
Medina County Board of Developmental Disabilities The mission of the Medina County Board of Developmental Disabilities is to promote and empower individuals with developmental disabilities to live, learn, work and socialize as citizens in their community. mcbdd.org Merrill Lynch
When it comes to family health care costs, you may have some needs that are more pressing than others. We can help. We’ll work closely with you to create a financial strategy that’s right for you and your loved ones. To learn more, please give us a call today, 159 Crocker Park Blvd. Suite 200, Westlake, 440-250-7944, brian.gehlbach@ml.com
For more than three decades, psi has been committed to meeting the health and educational needs of children in Ohio’s schools. Its psychological, health, speech and educational services now serve tens of thousands of children each year. psi-solutions.org Solomon, Steiner & Peck Law firm specializing in special needs trusts, elder law, estate planning, disability, Medicaid and veterans benefits planning, probate and trust administration, and corporate and succession planning. Offices located in Mayfield Heights, Independence and Westlake. 216-765-0123, ssandplaw.com Stark County DD The Stark County Board of Developmental Disabilities helps more than 3,900 Stark county children and adults with intellectual disabilities. By leveraging federal, state and local funds, Stark DD provides cost effective assistance with service coordination and monitoring, early intervention, school age programs, residential support, and employment. 330-477-5200, starkdd.org
Summit County Developmental Disabilities Board Summit DD is making meaningful connections in the community. It coordinates the essential services that children and adults with disabilities rely on each day. Its staff listens, identifies outcomes and connects people to the support that will help them work toward their full potential. Whether it’s in your workplace, for your family, or in your neighborhood, Summit DD is working hard to make meaningful connections for those it serves, one person at a time. 330-634-8000, summitdd.org Youth Challenge Youth Challenge provides free adapted sports and recreational activities to children and young adults with physical disabilities, ages 4-25, and their teen volunteer partners, ages 12-18. YC offers over 350 year-round programs and accessible transportation to young people from six counties in Northeast Ohio. 440-892-1001, youthchallengesports.com
Interested in copies of LiveSpecial for your school, organization or business? Contact wendy@livespecial.com
1,200-PLUS PROVIDERS AND RESOURCES IN NORTHEAST OHIO.
Planning
Equal
Opportunities for Students Planning field trips and extracurricular activities for students with disabilities By Nessa G. Siegel
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T
he Individuals with Disabilities Act (IDEA) specifically states that school districts must take steps to provide students on IEPs with an equal opportunity to participate in field trips and school sponsored activities. Section 504 of the Rehabilitation Act has found equal access includes serving students with disabilities, in both academic and non-academic settings, as is done for students without disabilities. Moreover, the Office of Civil Rights, the regulatory agency for Section 504 under federal law, issued a letter of finding that the proper place for discussion of field trips is at IEP or 504 meetings. For example, there have been cases in the Ohio Department of Education regarding refusal to provide sports opportunities, which results in failure to provide free appropriate public education. In furtherance of student rights, the agency also maintained that nurses are aides that a student is entitled to have at field trips, if his/her IEP requires a nurse
during the school day. Nor can the school demand the field trip if it does not do the same for students without disabilities. Importantly, the Office of Civil Rights has found that absences of staff are predictable and districts must plan accordingly. Parents should discuss school trips, appropriately, at the beginning of the school year when IEPs are drafted for the next school year. They should come prepared to discuss any issues they, or the school, find concerning about the student attending school extracurricular activities. Any problem behaviors should be addressed and, if necessary, can be incorporated into the goals and objectives of the IEP. A student with behavior issues may not be summarily dismissed from attending field trips. Backup for aides needed by the student at field trips are an integral part of the IEP document.
LIVESPECIAL IS MORE THAN JUST A MAGAZINE
It’s a free online resource. It’s a comprehensive database of providers for your every need. It’s a go-to guide for individuals with special needs, caretakers and providers in Northeast Ohio.
Our redesigned website caters to you and your family’s needs. Carefully curated with the user experience in mind, the new website provides:
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SERVICES FOR TEMPORARY OR LONG-TERM NEEDS EDUCATIONAL RESOURCES AND EXPANDED VIDEO GALLERY AN EASIER WAY TO SEARCH Email GetAnswers@LiveSpecial.com to receive information and updates.
THE MISSION
LiveSpecial.com is a free and comprehensive Northeast Ohio online, go-to resource for all things required to support individuals with special needs and their families. LiveSpecial.com includes an easy-to-navigate community resource guide that provides the most current medical, social and rehabilitative services and access information needed to help support any age person with special needs.