Preparing Deaf & HoH Athletes: Assistive Technology & Your Rights

Lexi, a nine-year-old athlete with hearing loss, prepares to bat. Her helmet hides the processors she wears over her ears. Photo by Gina Bailey.

By Jaime Vernon

I knew it would come: the day my daughter, Lexi, faced discrimination in sports related to her hearing loss. A helicopter parent questioned Lexi’s use of a device that allows her to hear on the field—a mask for her real outrage over her child’s strikeout. Awful sounding, right? But it happened to Lexi.

I authored this piece as a blueprint for everyone with hearing loss and deafness. I believe everyone with hearing loss and their family members should know their rights and what to do when something like this happens. And, as always, I want to share the needs and rights of individuals who wear cochlear implants or hearing aids with typical-hearing people.

Lexi Vernon, my nine-year-old daughter, is truly a force to be reckoned with. I'm not saying she's perfect. She is tough to coach. She experiences mental fatigue that sometimes makes her appear "spaced out.” Many times, she can’t hear you during softball practice due to distance or loud noises. She is headstrong and stubborn. However, Lexi is a raw, talented athlete and a fierce competitor. She's strong, tall, and determined. She is a talented basketball player and, more pertinent to her story, a fast pitch softball player.

The coolest part about Lexi's story is that she is 100% deaf. Lexi is a bilateral cochlear implant recipient. She had a surgery in both of her ears in which they implanted a cochlear implant into her cochlea which is located in her inner ear. That implant is also attached to her hearing nerve which sends signals to her brain. Lexi wears processors on the outside of her head (just over her ears) which are the microphones and small computers that send the sound (signals) into the implant. See how a cochlear implant works here.

During athletic games, Lexi needs a small device called a "mini-mic" which is an amplifier for the coach's voice. When she is wearing additional equipment, which can cover her microphones on her processors, or when distance is an issue; this mini-mic allows Lexi to hear her coach better. It’s still not perfect, but it really helps. Learn about a mini-mic device.

This weekend, I had to witness some awful behavior by parents of young athletes. I also had to witness umpires handling it all wrong.

Our team, the Tennessee Bash, of which I’m one of the coaches, was playing in a World Series in Tennessee. We were one of the “teams to beat.” Lexi is a pitcher on the team. During the final game to determine or placement in the Winner’s Bracket, not only did our opponent question Lexi’s assistive technology, but so did the umpires.

I have no problem if anyone asks about her equipment—and I usually disclose it. This tournament, however, only allowed one coach out at pregame, so I didn’t have an opportunity to do so.

The fans started yelling and acting foolishly, thinking I was feeding Lexi information into some mic when they noticed her device. To be honest, I don't even call the pitches. That coach does not wear the mini-mic. She takes the sign from her catcher like everyone else. Then our first base coach uses it when she's up to bat.

The umpire soon raised the questions to our first base coach. Their conversation went like this:

Umpire: “So, is she hearing impaired?”

Coach: “Yes. She is deaf. She was implanted with cochlear implants in both her ears and this mic helps her hear me with all the equipment.”

At that point, it should have been done. Finished. End of conversation.

But no. The umpire wasn’t satisfied. “Can’t she use signs?” she insisted.

Stop. Wait a minute. That is more offensive to us than anything. We fight every day to mainstream Lexi in a spoken language world. Lexi went through five years of intense speech therapy, a special “oral deaf rehab” school and speech tutoring at home three nights a week. She worked hard to be able to hear and speak.

The opposing fans went on about it. Then, an umpire not officiating the game, sitting under a tent, started questioning it. And we’re in the middle of the game! Our coach was trying to coach! Lexi wasn’t even up to bat; she was in the dugout!

Thankfully, Lexi couldn’t hear any of what was going on and Coach Charles took the mini-mic away from his mouth. How would Lexi have felt if she knew half of the people at that game were going on and on about how she shouldn’t be able to use equipment to help her hear?

So, after all the hullabaloo, I went out and spoke to the umpire directly. She seemed satisfied with my explanation. However, the fans didn’t let up. My co-coach handled it sublimely.

So here’s the truth. If our circumstances permit something that stretches our emotions or mind or will, we are supposed to use it. I’m going to use this situation as an example of how to be equipped for this in the future.

Let’s say someone was on the softball team with a prosthetic leg. Do you think anyone would ever be upset that they were playing with their leg on? No, because any human being would be touched by this person’s courage to participate in mainstream athletics!

Simply because you cannot see someone’s hearing loss or deafness doesn’t mean it isn’t something very real and very difficult to overcome. That’s Lexi—and hundreds of thousands just like her. They overcome deafness every single day due to amazing technology, but it isn’t human, natural hearing. They do, at times, require special needs.

Resources

• Laws, Rules, and Regulations: These laws state that people with hearing loss and deafness have the right to an “even playing field” figuratively and literally speaking.

• How to Manage the Use of Assistive Technology in Athletics

Whatever you do, prepare yourself or your child for this possible scenario. Remind them that people can be ugly many times and to simply ignore it. Remind them that there are also incredible human beings in this world that fight for these laws to exist, so let’s focus on the fact that they can hear, use spoken language and play sports like every hearing person!

Jaime Vernon is the Founder and CEO of Songs for Sound, a nonprofit organization focused on hearing healthcare and inclusion opportunities for those with hearing loss. This story was republished with her permission. For more on her daughter Lexi Vernon’s cochlear implant story, visit Songs for Sound’s Mission & History page.

Some 1 Like You

By Makayla Allison

Our 6-year-old daughter, Lily, was recently diagnosed with Ehlers Danlos Hypermobility (EDS-HT). We received this diagnosis only after she acquired more than three dozen symptoms and diagnoses of uncertain significance, ranging from global joint pain and muscle weakness to tinnitus, and over the course of nearly five years.

It was a long and isolating time for our family as we tried to figure out what was going on. We so badly wanted to connect with someone who understood what our little one was going through, and when I asked Lily’s specialists if they could connect us with anyone, the answer was never yes due to privacy laws. Without a diagnosis it is nearly impossible to find groups of people in the same situation to talk to. And it can be even more frightening when the uniqueness of your symptoms isolates you even more.

The discovery of how Lily’s condition affected her hearing was both transparent and innocent. When Lily was 4 years old she asked me if the invisible bumblebees were going to sting her. She was so confused why she couldn’t see the bees that buzzed around her ears. It was shortly after she was referred to an ENT that we learned about tinnitus and that the sounds she hears come from inside her head.

Our daughter had a big desire to find a friend like her, but looking for someone else experiencing the same health challenges online, without posting them in great detail, was proving to be an impossible task. Her dreams inspired us to create Some 1 Like You (S1LY), an organization that connects people privately based on whatever health conditions they are experiencing, regardless of whether or not they’ve received a diagnosis.

According to the documentary film Undiagnosed: Medical Refugees, “The total number of undiagnosed patients is unknown but considered to be vast.... It takes an average of 7.6 years in the U.S. to uncover a rare disease diagnosis. Worldwide there are an estimated 350 million people living with a rare disease; add to [that number] patients still waiting for a diagnosis, patients who have been misdiagnosed, and adults and children who have diseases not yet named or recognized. Being ‘undiagnosed’ is not commonly considered to be an identity, but it should be. Helping people who are ill to feel that others are supporting and advocating for them, and know that they exist, can make all the difference in the world.”

Our mission for S1LY is to privately connect people across symptoms and diagnoses to empower the individuals facing these complex challenges. S1LY is unique because we can perform that search for people, while also keeping their health information private: To make these matches we take only their email address, as well as the health qualities, or groups of qualities they possess and are looking for in someone else.

Once a match is made, the email addresses of those members are shared with each other, and communication is then done only between members. It is our hope that this vast sharing of knowledge and resources among patients will make its way back to physicians and impact treatments as a whole across diseases.

S1LY has developed a Gifted Membership program to cover the lifetime membership fee to Some 1 Like You for constituents of qualifying organizations. 100 gifted memberships have been donated to the Hearing Health Foundation community. The first 100 people to submit their Connect Contact Forms to S1LY with the code “HHF100” will receive lifetime memberships to privately connect with Some 1 Like You members.

If you would like to explore gifted memberships for your patients or members at no cost, please email Makayla at gifted@some1likeyou.com. A portion of the proceeds of every S1LY membership goes to funding research on Ehlers Danlos Syndromes.

Finding a Community of Musicians with Hearing Loss

By Joanna M. Eng

At eight years old, Jennifer Castellano learned that she had perfect pitch—and found out that she needed hearing aids for a mild to moderate hearing loss in the middle frequencies, known as a “cookie-bite” loss. Now as a performing pianist and composer with two original solo albums, she has been featured on classical radio programs and has written music for an orchestra and a music teachers’ association.

Jennifer wrote about her unique experiences as a musician who has hearing loss, as well as a lifelong visual impairment caused by endothelial corneal dystrophy, in Making Music with a Hearing Loss: Strategies and Stories. She also serves as secretary of the Association of Adult Musicians with Hearing Loss (AAMHL), a nonprofit organization led by Wendy Cheng.

Leading up to AAMHL’s 2017 conference for musicians with hearing loss (July 13–16 in New Jersey), we talked to Jennifer about her music and how AAMHL has been a part of the journey.

How have the challenges differed between having a hearing loss and having a visual impairment?

My vision is much like my hearing.  Even with corrective lenses, my visual acuity is 20/300.  I cannot see things far away, but if I am up close I can see fairly well.  Without my hearing aids I can't hear too much, but if the sounds are really close to my ear, I can make them out.

But I can tell you that I have gotten two completely different reactions.  Since I was small, there were always resources made available to help me overcome my visual impairment. However, I was given no resources to help with my hearing loss. 

I didn't begin to talk until I was three-and-a-half years old. When my parents took me to a speech therapist, she advised that I would begin speaking when ready. My parents thought I was a late bloomer. They didn't consider hearing loss at that point because they were so focused on my vision problem. 

My mother spoke much louder than the average person (she claims it is because she is from the Bronx) so that is probably one reason why I was able to fool people for so long.  When you have a cookie-bite loss, it is easy to fool people because it’s like “oh, but you’re hearing these high and low frequencies fine.”  I never understood too much in the classroom though, especially when classmates spoke.  My teachers thought I was spacing out and not paying attention.

I did not have an FM system in school and did not become aware of what an FM system was until I was a second-year grad student.  When professors would comment on my piano tone sounding too percussive, I had no clue what they were talking about because I couldn't hear and tell the difference between tone qualities.

I currently wear Phonak Certena hearing aids in both ears.  I don't use any other listening devices when playing solo piano, but if I am playing with other instruments, I may have one of the performers wear my FM transmitter.  For example, when  guitarist Charles Mokotoff and I played a duet together, he wore my transmitter around his neck and it picked up the sounds of the guitar quite nicely.

What has been your involvement in AAMHL? How long have you been a member?

In 2007, I found the organization by doing a Google search.  At the time, I was a second-year grad student who was struggling to hear one of my professors in class and was looking for some resources. My hearing loss was now moderate to severe. It had changed in my early 20s, which is when the tinnitus started to kick in.  I wanted to know if there were other living musicians with hearing loss like myself.  I contacted Wendy, and the rest is history. 

It wasn't until 2015 that I began serving on the board as secretary, so I helped in planning the 2015 conference.  We met online at least once a month and discussed how the convention was going to work.  We would talk about the equipment we needed to make the event accessible for people with hearing loss.  I got to witness all of the hard work Wendy puts into this organization.  It is truly amazing what she does.

You played in ensembles with other musicians with hearing loss through AAMHL. What was the experience like?

I played mostly in duos.  I played with guitarist Charles Mokotoff, soprano Dawn Mollenkopf, violist Wendy Cheng, jazz singer Mandy Harvey, and violinist Stephen Shey.  AAMHL brought us all together for the conference in 2015 and the open mic event at HLAA's 2016 conference.  We all live in different areas so there was no way that we would normally play together.  AAMHL provided a common platform from which we all could perform together.

I don't consider these experiences to be different from the experiences I have had playing with musicians with normal hearing.  The experiences vary from person to person.  I have worked with some very fine musicians, some of whom have normal hearing and some who don't.  I would say that my more unfortunate experiences came from working with musicians who had normal hearing.  It seems that when one is faced with an obstacle such as hearing loss, it not only forces him or her to work even harder, but it also humbles them.

Another thing that people need to realize is that the level of musicianship is not determined by how well a person hears but rather how well a person listens.   Just because a person has normal hearing doesn't automatically make them a good listener.  When it comes to listening, one must be able to pay close attention and recognize what is happening around them.  Having a good musical ear means you have a good memory.  I was the strongest student in my ear training classes, not because I had the best hearing but because I have a very good memory.

Lastly, being a good musician requires discipline.  I have worked with six different musicians who have hearing loss and all of them are very disciplined.  They all were prepared and knew what they were doing, and we had only a matter of hours to prepare for a performance because we all were coming from different areas.  We all had to make sure our individual parts were rock solid. 

What were some of the highlights of the first AAMHL conference in 2015? What did you gain from it?

I really enjoyed the 2015 conference because I got to meet so many fine musicians and I got to learn about the available resources for people with hearing loss.

It was nice to finally meet others who had experienced similar things and who understood all too well the preconceived notions associated with hearing loss.  In my past experiences, everyone thought that because I wore hearing aids, my hearing was normal when I had them on.  Not true.  I got to learn how people compensate for their hearing loss and are able to successfully make music.

Probably one of the most memorable experiences, though, was when I met the singer Dawn Mollenkopf, who has a severe to profound hearing loss. And like me, she has synesthesia, a phenomenon in which perception in one sense triggers perception in another. We both perceived music in color and for us, this was a great tool for us in listening to music. Certain colors went with certain musical notes.  In my own personal experience, "seeing colors" in response to hearing sound helps me recognize and understand what I am listening to.  It is my synesthetic experiences that enabled me to develop a good musical ear because colors served as memory aids. This was my first time meeting a person with hearing loss who experienced synesthesia.

How long have you been composing music? What do you love about composing and what do you hope to express in your work?

I began composing music seriously when I was a sophomore in college. I have gone through different periods of writing.  In my early years, my focus was on incorporating visual imagery in my music, thus proving the commonalities between sound and color.  My work was influenced by my synesthesia.  Then shortly after graduating from college, I adopted two small parrots and soon my music took an avian spin.  It was my intention to pay homage to our finest music makers, birds.  As of now, I find myself seeking the divine or perhaps something that cannot be understood by the spoken word.  My music has always been a bit abstract but now I find that my music simply is what it is, a kind of story of a soul, my soul, striving towards happiness, striving toward heaven.

I can't say I enjoy composing music.  Actually the process is quite painful and is a lot like pulling hair.  It doesn't come all that easily but once the music is written and gets a performance, it is well worth the aggravation.  Writing music is a way to leave something behind for the generations after me.

What was the inspiration for your latest album, Images?

Early in 2015, I made a pilgrimage to the Holy Land with members of my church where we visited various historic and holy places. This wonderful trip was the inspiration behind Images, a collection of seven piano pieces, each inspired by either a specific place, moment, or feeling during my visit.  There are other original piano pieces on the CD, three of which were commissioned by the New Jersey Music Teachers Association.

What's next for you? What are you excited about in the coming year

Well, at the beginning of March I had my first organ lesson.  Yup, I am learning the organ.  I had played piano for a few masses at my church and enjoyed it.  There was no organist available at the time and I didn't know how to play so I played the piano.  This made me curious about the organ and so I decided to learn in hopes that I can be a church organist someday.

This post originally appeared in Grand Piano Passion™.It was repurposed with permission. 

My Hearing Is Not Perfect

By Norman Molesko

MY HEARING IS NOT PERFECT

What did you say?
Face me!
Please say it again!
Clearly. Slower. Louder.
I want to understand you.
I know you said something to me.
It may not be what I heard.
May not be what I think you said.
My hearing is not perfect.
Not all sounds are clear to me.
Not all sounds can be heard by me.
Some sounds are difficult to hear.
Some cannot be heard at all.
I don’t want to be unsure of myself.
Please repeat what you said?
Clearly. Slower. Louder.
I need to understand you.
 

By: Norman Molesko, age 86, 

©2011, Ambassador For Seniors

My Daughter, My Inspiration

By JoAnn Wood, Au.D.

It's been 15 years since my daughter Georgie was born and her hearing loss discovered. At that time, I couldn't picture that she would ever hear me say "I love you,” or that I would ever hear her call me "Mommy.” When I found out that my daughter was deaf I imagined her struggling to learn speech and language, working hard to get good grades and having difficulty making new friends. That's not at all what Georgie's story has been like.

Since I had two sons without hearing loss, my daughter's hearing loss was unexpected. At 1 day old, Georgie failed the Universal Newborn Hearing Screening at the hospital where she was born. Two weeks later additional testing revealed that Georgie had a moderate to severe sensorineural hearing loss in her right ear and a severe to profound loss in the left ear. This was very difficult news for me and my family to hear.

After the diagnosis my husband, who also has hearing loss, and I decided to get her hearing aids right away. At 7 weeks old, Georgie was fit with her first set of digital behind-the-ear hearing aids. She wore them consistently for three years while getting extensive speech and language services and attending special programs at schools for the hearing impaired.

Unfortunately, Georgie's hearing loss progressively got worse. Even with the hearing aids, at 3 years old Georgie’s limited speech and language was far behind that of her peers. She was saying some words but only I could understand her. That made me feel sad, and I could see that it was frustrating for her. Other children her age were talking in complete sentences.

It was then that the cochlear implant became a better option for Georgie. She received an implant in her left ear at age 3 and continued to wear a hearing aid in the right ear. Within three months of implantation, Georgie's speech and language began to take off! People were able to understand her, and she became less frustrated. Georgie began to take dance classes, the start of a lifelong love.

When she was 5, and the Food and Drug Administration approved bilateral cochlear implants for young children, Georgie underwent cochlear implant surgery again, but this time on the right side. It improved her hearing and communication even more. That same year Georgie started kindergarten in the mainstream. By the end of kindergarten, she was disqualified for any speech and language services because she had completely caught up to her peers. 

Universal Newborn Hearing Screening wasn’t an option when my two older sons were born, so I am grateful that when Georgie was born it was required. Her hearing loss was detected immediately.

The experience with Georgie led me to go back to school starting when she was a toddler, to get a bachelor’s, master's, and ultimately a doctorate in audiology. I have had my own practice for the past six years and I am a professor at a local private college. In fact, Georgie comes to my class each semester to talk openly to future speech pathologists and audiologists about her experiences.

Georgie will be starting 10th grade in September and takes all honors classes.  She has received high honors every semester since 6th grade. She is a well-rounded and very social young lady. Georgie's love for dance has taken her to a competitive level, having won several regional awards in many genres of dance such as ballet, lyrical, contemporary, hip-hop, tap, and jazz. 

Looking back I wish I knew then how well Georgie would do and that everything was going to be okay. She has worked hard for all that she has accomplished and I am very proud of her. She is truly an inspiration! 

My Story

By Taylor Thompson

As an infant, I loved when my aunts and uncles brought out the pots and pans. They banged them as loudly as they could and I would giggle away—unlike a typical baby, who would likely be startled by loud sounds. My failure to react was one of the early signs my family noticed that I was different. In fact, my mother had a gut feeling I was deaf and took me to a doctor.

At first doctors dismissed my mother's intuition because I babbled and made noises like typical babies do, and was not mute as many deaf babies are. However, she remained persistent and took me to more doctors until finally at age 18 months I was diagnosed with bilateral sensorineural hearing loss.

Originally, I was fitted with behind-the-ear hearing aids. After some time and further hearing tests, it was evident that hearing aids were not enough. Doctors determined that I was a candidate for the then-new cochlear implant in 1995. At 2 ½ years old I received a cochlear implant (CI) at the Riley Hospital for Children by Dr. Richard T. Miyamoto, who is an HHF Honorary Board Member.

My mother made sure I received the CI as soon as possible because she wanted to ensure I had the best chances for developing speech and hearing. Although it seems young, 2 ½ years old is a late age to begin speech development, so I attended speech therapy throughout elementary school until I reached a proficiency comparable to my age group (which was around 5th grade). 

Until I could learn to speak effectively and comprehend spoken language, I used Exact English sign language. I learned Exact English because it’s structure closely resembles the spoken and written language structure, so my transition would be easier when I began to speak and read. At some point, I am not sure when, I stopped utilizing Exact English and completely transitioned to understanding others through a combination of lip-reading and hearing.

When I was younger, I attended a mainstream school that had a hard-of-hearing program. This was unique because I was able to interact with peers ranging from hearing to completely deaf—like myself. While growing up in this program brought wonderful opportunities, it still did not come without hardships.

During my time in this school, I was mocked for not being able to hear as well as the other students in my class who also had hearing loss, but not by those with full hearing. Being bullied by my hard-of-hearing peers and not my hearing peers was very confusing; it was easier to comprehend why someone might have trouble accepting me if they could not relate to me, but these peers were also struggling with hearing issues.

This became my biggest struggle growing up—understanding my identity—as I was ridiculed for being deaf while having this thing (my cochlear implant) on my head. I spent a lot of time after school exploring questions such as: Am I really deaf because I can hear with this thing (CI)? What does it mean to be deaf? Am I a disabled person or do I just do things differently?

Being deaf with only one CI has limitations since my hearing loss affects both my ears. To overcome some of these limitations, I have a wonderful hearing service dog named Zoë. Her most important role is to alert me by nudging me with her nose when a sound goes off, such as door knocks, a kitchen timer buzzing, and the noise of a pedaling bike. These alerts are especially helpful when I am not wearing my implant at night or when I cannot distinguish white noise from a specific noise, like a passing car.

Taylor, with her dog, Zoë

Despite the challenges I have faced, with the support of my family, friends, and a loyal dog, I persevered and became the person I am today—resilient, confident, and proud. And little did I know but appreciation for my loyal childhood dog inspired me to work with animals for the rest of my life.

Through diligence and determination, I was accepted to Purdue University College of Veterinary Medicine, where I am currently in my second year studying to become a small-animal veterinarian. I hope someday to combine veterinary work with giving back to the community, including disabilities awareness and advocating for hearing health.

Taylor Thompson is a 23-year-old veterinary student at Purdue University College of Veterinary Medicine in Indiana. 

My Father: My Model in All I Do

By Audra Renyi

Audra with her father

My model in all I do is my father. He is my hero and always will be. He has gone through so much, and never a complaint, he just carries on. I always have my father’s advice to support me in whatever I do. He is very calm and analytical and looks at things from every angle.

Ever since I was little, I knew he had trouble hearing. He grew up in Romania and when he was 9 years old, an ear infection impaired the auditory nerve in both his ears. He wears a hearing aid in his left ear, but needs one in each.

In 1967, my father was working in the engineering department of Volkswagen in Brazil. They were test-driving cars in the state of Mato Grosso. During a night hunt on the Jauru River, a local in my father’s dugout canoe fired his gun right next to my father’s head. For two days afterward, my father could not hear a thing. This only worsened his hearing, of course.

Eventually I will have to persuade him to wear a second hearing aid to improve his stereo perception. Since I dedicated my career to hearing loss five years ago, I started noticing things about my father that I had taken for granted. For instance, he does not hear me as well when the light in a room is dim; I came to realize how much my father lip-reads and how important it is to look at him when I speak.

When he turned 50, he was diagnosed with polycystic kidney disease and had to undergo dialysis in a hospital four times a week. He did receive a kidney transplant but the kidney died after a few years, so he is back on dialysis. Not to worry, it did not manage to slow him down. But I get angry sometimes when nurses at the hospital mumble or do not speak clearly to him. Hospital staff should be trained to communicate clearly with an ever-growing number of older patients with hearing loss. Patients can miss critical information from their health providers, just because they can’t hear.

My brother Aras has also become hard of hearing. He’s an explosives specialist with the Canadian Army who fought in the infantry in Afghanistan. At 32, he will soon need hearing aids to help offset the effect of all those explosions. But there’s no problem hearing him, he’s got the voice of a drill sergeant!

One of the things I learned working with hearing loss around the world is that this invisible disability affects not just the individual but the family as a whole. Not having hearing aids when you need them will cut you off from school and a decent job but it will also affect your parents, siblings, and children.

So it is not a coincidence that when the time comes to buy a hearing aid, the initiative often does not come from the person affected but rather from her parents, his children, or the spouse. They take the person by the hand and drag her/him to the audiology test. People are reluctant to acknowledge that they need a hearing aid, much more so than when they need eyeglasses. And yet, once they are wearing the hearing aid, people just grin with the pleasure of hearing again, and are grateful for having been pushed into wearing it.

One day in Jordan, where our team was working to screen children and provide them with hearing aids, we had just fitted a little boy with his first hearing aid when his father walked in the door and called his name; the boy looked up, saw his father, and burst into tears: He had never heard his father’s voice before. Put simply, that is what motivates me to carry on.

Audra Renyi is the executive director of the Montreal-based World Wide Hearing Foundation International, which provides access to affordable hearing aids and services to children and youth in developing countries. A former investment banker who then worked in Kenya, Rwanda, and Chad for organizations such as Doctors Without Borders, Renyi is also launching her own social enterprise, Hearing Access World, to sell low-cost, high-quality hearing aids.

Educating Children with Hearing Loss and Autism Spectrum Disorder

By Eric Sherman

Older Brother, Zach, Cole, and Eric (dad)

Gallaudet Research Institute’s 2009-2010 Annual Survey estimates that about 40 percent of children with hearing loss exhibit another disability and notes the prevalence of autism spectrum disorder (ASD) to be 1 in 59. Early intervention is critical for the development of speech, language, communication skills, and learning. Some families are fortunate to discover their child’s hearing loss at a young age so an early intervention program can be implemented to help their child stay on track with their hearing peers.

What happens when your child is diagnosed with profound to severe hearing loss at 6 months of age, receives his first cochlear implant at age 1½ (second at before his 5th birthday) and spends a couple of years in auditory-verbal therapy (AVT) or speech therapy, but is showing little to no progress?

This was the case with my youngest son. After receiving a second cochlear implant at 1½ and then two years of AVT, my son was nowhere near his hearing peers in communication and language skills. My wife and I knew language development could be a long process, but our gut was telling us that something else was wrong. Our auditory-verbal therapist advised us to seek additional medical evaluations to see if there was something else prohibiting our son’s language development. After having evaluations done, our son at almost 3 years of age was diagnosed on the autism spectrum.

Having a child with hearing loss takes lot of work. Add autism to the mix and it is like trying to solve a puzzle without knowing which pieces are in play.

With intensive behavioral and speech therapy over the years, our son, age 11, has done well. He has become more verbal and can certainly communicate his needs and wants. What is difficult is unlocking the doors into his learning style. There is this blurred line between his autism and hearing disability. When our son has difficulty doing schoolwork, we always question whether he is hearing the information, whether he has a problem processing the information, or whether he is just not interested in the material because it has no real meaning to his everyday life.

Our son has been lucky over the past three years having a teacher who is very creative and skillful in engaging her students. But this has not always been the case. My family’s experiences have taught us that the school district needs more information and training on how to educate a child with both hearing loss and ASD. Service providers need to know how to address each disability individually and collectively understand how they impact a child’s overall education. We have a school audiologist who wanted to create a goal for our son where he tells his aide or teacher when his CI processors are not working. This is a reasonable expectation for a child with hearing loss, but when ASD is added to the mix this may be difficult to achieve.

A child with ASD may have to be taught what it means for their processor not to be working, as well as what to do after they determine they are not working. Furthermore, generalization of whether the processor is “working or not working,” “broken,” or “on or off” may be confusing and difficult to understand. Our son believes his processor is “on” if his headpiece was attached to his head. Also, a child with autism may prefer the silence and not notify anyone their processors are off.

The dual diagnosis of hearing loss and ASD has been documented for the past 20 years; however, research and clinical guidelines on how to find and teach young children with this dual diagnosis are sparse. School professionals and educators need more tools and training to better equip the growing number of children afflicted with ASD and hearing loss. Both Advanced Bionics, which makes cochlear implants, and Illinois State University have done work on this issue, calling attention to the need for better diagnostic tools, early intervention, and training of education professionals. Still, significantly more needs to be done.

Eric Sherman is a father of two boys. In addition to advocating for his son and others, he serves as a parent representative on advisory boards on how special education and family support services are implemented in his local school district. To learn more about Eric Sherman visit ciwear.com/Ourstory/index.html

My Hearing Loss Journey

By Meghan Bayer

August 12th, 1996, I came screaming into the world. I had all my fingers and toes and my parents could not have been more proud of their “perfect” baby girl. I was (and still am) blessed by having two very loving parents,  and just over two years after my parents had me, they gave me the extraordinary gift of being a big sister.

Meghan (on right) with her dad and brother

As I went through my toddler years, I hit all my developmental milestones. Around the age of three and a half, my parents started noticing that I was always turning my right ear to the person speaking. Something wasn’t right. I was not reacting to sounds the way the typical hearing child should. My parents took me to my pediatrician who referred us to an audiologist. On September 28th, 2000, at the age of four, I was diagnosed with bilateral moderate-severe sensorineural hearing loss and immediately fitted with hearing aids. My dad and brother also have congenital hearing loss and wear hearing aids.

When I was first diagnosed, my parents’ worlds’ were shattered. My dad continued to be in denial and all my mom could do was hold me and cry. I think they felt I would somehow be limited in by abilities. As a way to recover and accept the diagnosis, we started taking family sign language classes which we all enjoyed.

My whole education, I have been mainstreamed in a private school. I had a very typical childhood; my mom drove me to soccer, dance, gymnastics… you name a sport and I have probably at least tried it. My days were filled with homework, playing outside, and evening swimming lessons. I was a well-behaved student that had earned the respect of all of the teachers, faculty, and staff. I maintained straight-A’s and regularly made the honor roll. At school, I had a hearing support teacher come in for a half hour twice a week during school hours to troubleshoot my equipment, review math skills, and occasionally play fun games.

In 5th grade, my family moved two hours away for my parents’ jobs. I didn’t know anyone and I was very shy. If someone asked me about “those things on my ears” I would stare at the floor silently.

Everything was different. I had a locker now, a bunch of teachers that didn’t fully understand my needs, and a new hearing support teacher. I lived in a new city and making friends seemed like an impossible task. I had to deal with my first real bully who would he call me names and physically abuse me.  When I defended myself from getting hit by a hockey stick, I got detention.

Through the years, my hearing became progressively worse until I was profoundly deaf in my left ear and so I was implanted with bilateral cochlear implants during the summer of 2010.  With intense therapy, I successfully learned to hear. I was constantly amazed at my new hearing world. With the increased ability to hear, my academic success improved dramatically and my confidence soared. I received my second implant just days before starting my freshman year of high school.

In order to fulfill my school’s foreign language requirement, they offered to let me take ASL. I politely declined and stated that I would be taking French. I was at or near the top of my class all four years of French. My sophomore year, I was given the French II Award for the highest academic average in my class. This goes to show that if you work hard, anything can happen!

Hanging out with friends, homework, community service and year-round basketball ruled my life. I was inducted into the National Honor Society, served as the president of the school’s service club, and enjoyed helping out with school events. By my senior year, I had over 800 service hours and I was awarded my high school’s highest honor for my scholarship, character, and service. I graduated with highest honors, a varsity basketball letterman, and as a member of the National Honor Society.

Today, I can confidently tell you that hearing loss will never be an excuse for me or any of my family members. My present goal is to earn my degree in Communication Rhetoric, minor in the Administration of Justice, and obtain a certificate in National Preparedness and Emergency Management. It sounds like a lot, but I’ll get it done because there are no excuses!  While I am by no means fluent, I do attend our ASL club on campus and continue taking classes.

Looking back on the journey, I am thankful that my speech was completely unaffected by my severe inability to hear during the prelingual period. I am grateful to my parents and I would not be where I am today without the help of each and every single person on my journey.

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Sounds like Meniere's Disease

By Haley Walker

Haley getting hearing aid mold impressions

“Looks like you have Ménière’s disease,” my doctor said. My heart skipped a beat. What does that mean? What on earth is that? Over the next couple of months I had various hearing tests done, and met with an ear, nose, and throat doctor. It was a lot to take in.

At first I was just glad to have an answer to my problems. A name, a label, an explanation—and to know I am not going crazy. But after that I began to feel worried. Ultimately my diagnosis meant progressive hearing loss; not only did I need hearing aids for moderate hearing loss, my hearing could get worse.

Ménière’s also means I have to follow a low-salt diet. I can’t eat more than 1.5 grams a day of sodium. That’s about a third of a teaspoon. No fast food, no processed food, no added salt.

Ménière’s disease is a disorder that causes abnormal fluid retention in the inner ear, leading to balance problems, hearing loss, and tinnitus (ringing in the ears). Typically, it only affects one ear but lucky me—I have it in both. My doctor was very surprised and said it's quite rare, but as I researched the condition I found a lot of people have it in both ears. That made me feel a bit better.

The truth is it took over a year to finally get this diagnosis of Ménière’s. If I really think about it, I started having disabling dizzy spells that caused vomiting and nausea when I was in high school, at age 16 or 17. (I am 20 now.) My family and I wrote them off as anxiety attacks and dealt with them as they came.

I remember trying to walk home up a hill behind the school one day and literally falling on my face because I couldn’t walk straight. Mmmmm dirt… yummy. I stumbled home and laid down on the floor in our living room crying. I couldn’t get a grip on myself. What is happening to me? Anxiety definitely played a part, but I now know there was a more pieces to the puzzle.

I am now treating Ménière’s by following my low-sodium diet, wearing my hearing aids, and taking a diuretic—a medication that helps to control the abnormal fluid retention in my ears. (This is why limiting salt also helps—salt makes you retain water.) It was incredible when I first got my hearing aids. Everything I had been missing I could suddenly hear! I now can enjoy the little things like the birds singing outside my window in the morning. When the tinnitus gets really bad I put on background white noise, like the sound of the ocean or rain falling. And when the dizzy spells hit, I do the only thing I really can, sit or lay down, and close my eyes waiting for it to pass.

Haley and her hearing aid

If you or someone you love has been diagnosed with Ménière’s, don’t worry—it's not the end of the world! You learn to cope and manage your flare-ups, and hearing aids are amazing. I cried tears of joy the first time I listened to music after I got them.

The important thing to remember is that you aren’t alone! There are others out there with Ménière’s. Join a group on Facebook or start your own. Talking to others who understand what it's like and what you are going through helps so much. Look at celebrities, like Katie Leclerc, who are dealing with it every day and rocking it.

And lastly, take care of yourself. On bad days, pace yourself and do what you need to do to feel better. Always remember, “This too shall pass.”