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.”

IT HAPPENED TO ME: I'm 27 and I Just Got Hearing Aids

By Sarah Klegman

As un-cool as they may be at times, and even though my hearing loss isn’t as bad as most, hearing aids have changed my life.

After an adverse reaction to medication left me with Tinnitus (a constant ringing in your ears, it’s lovely), I was put through a series of hearing tests. I sat in a vault-like room listening for beeps of varying volume. Afterward, they told me that I had high frequency hearing loss, and I’d be a great candidate for hearing aids.

Urm, no, I do not need those.

Big, clunky, ugly pieces of wannabe skin-color machinery, shoved into wax-filled hairy old-man-ears... I don’t need them. It’s just that I have to read lips in loud places and my close friends know to stand on my left side because my right ear is worse than my left and sometimes I miss important things in meetings and on phone calls.

Ooooooh.

I walk into the hearing aid place my insurance company recommended (but doesn’t cover). The audiologist brings me into his office and runs through what feels like his usual spiel. After tapping his fingers on the keyboard for a minute, he hands me a pair of ear buds that are wired to his computer.

“You’ll hear static for a moment before they turn on.”

I put them in, and hear the static like he says. Then the static stops, and suddenly, there are… sounds.

Everywhere. Everything has a sound. It’s like I can see the space around me, but with my ears. I hear the hum of his computer, the sound of his pants on his office chair as he shifts his position to look closer at the screen.

He picks up a piece of paper and I hear it. I hear a piece of paper. It crinkles and as his fingers move across it, I can hear the texture.

My eyes start uncontrollably watering as I realize how much I have to experience and hear. I shuffle my feet on the floor, taking so much joy in hearing the synthetic threads against my shoes. I kick my purse with my foot and hear everything inside move. It's like a drug, and I am greedy for it.

He tells me that I can take them off… but I stall, asking him questions so I can keep them in a bit longer.

“Where are these manufactured? How long have you been an audiologist? Have you ever been to the restaurant next door?”

We go over pricing (average being $4k+) and I leave his office seeking out a second opinion.

I did some Googling and landed on the website of Dr. Stephen Kirsch, an audiologist just up the street. His website said that he and his wife spend time outfitting children in Africa with hearing aids. Um, yes. I like him already. I call and make an appointment.

He welcomes me into his office and I’m feeling anxious, but trying to play it cool, wondering when I’ll get to put hearing aids in my ears again. We start talking about my hearing loss, and then he asks me if I want to try some out. “YES, YES I DO.”

His aren’t wired to a computer like the other guy’s. They’re just regular hearing aids, and they’re TINY. Like, I could accidentally swallow them in a salad and not notice, tiny.

He helps me put them in, and my eyes widen, searching the room for something new to hear.

“They’re not on yet,” he tells me. “Oh,” I sheepishly respond.

Just like the other guy, he tells me I’ll hear static for a minute while he adjusts things. Then, like before, my ears switch on. I light up, and this time, so does the other person in the room. He taps his fingers on his desk; he picks up a piece of paper and shakes it around, indulging my greediness for sound.

He tells me some things to expect. How I’ll get used to hearing my own voice, it might be overwhelming in loud places, and… I’ll be able to accurately represent myself. I hadn’t thought of that last one, and I didn’t fully understand it at the time, but I would come to.

He lets me take a pair to test drive. I get in my car, smiling like an excited dog following new smells and I turn on some music. A Mumford and Sons song comes on and I have what can only be described as an eargasm. The violin. I can hear the violin! I didn’t even know there was a violin in this song!

I have high frequency hearing loss, so the higher pitch the sound, the less I can hear it. Harmonies became richer. I could hear the strings of the guitar. The fibers. Then some less exciting realizations came to me – like how those whispered conversations probably weren’t that quiet, my laugh really is that loud, and those toots may not have been silent.

Oops.

When I was younger, doctors said that I had premature hearing loss, but that sentence was never finished with, “and hearing aids could make a significant improvement on your life.” 

So, my family and friends continued thinking of me as a “bad listener.” Which, I guess, technically, I was -- but being called a bad listener hit me in the heart. To me, they were calling me self-absorbed and disinterested.

I know I’m not perfect, but most of the time I was trying. However, just straining to hear someone can come off as unwelcoming. Your face scrunches up, your eyebrows furrow, and your neck cranes out -- body language that reads negatively. So, after a while, I stopped asking people to repeat themselves as often.

“What? Oh… you already repeated it twice, and if I ask once more, you’ll scream-repeat it at me angrily? Oh, um, yeah, no, I totally heard you.”

I asked Dr. Kirsch if I could pick his brain for this article and he enthusiastically agreed. While chatting, I told him about being called a bad listener. He paused, looked me in the eye and said, “But you’re a great listener.” My heart swelled. 

He continued, “You are a great listener largely because you and others with hearing loss pay such close attention to body language and facial expressions which tell more than the words on their own.”

He told me about a lawyer he worked with. The lawyer worried that if people noticed his hearing aids in the courtroom, it would be perceived as a sign of weakness and inspire doubt. 

Unfortunately, because of all the stigma, a lot of people who could use hearing aids don’t get them. As few as 1 in 5 people who have hearing loss actually do something about it.

My first week with hearing aids, I wore them to a beach house with some friends. They were all very happy for me, but I kept hearing this static. Something must be wrong with the hearing aids, I thought.

“There! Did anyone hear that?!”

Nope.

“That?!”

Nope.

Then my friend Sally goes, “Wait a second. Do you hear it right… now?”

“Yes!”

Another moment passes, “And… now?”

“Yes!!”

“Sarah,” she says, “those are waves. You’re hearing the ocean.”

Later, I had a meeting with this guy. I had my hearing aids turned up so I wouldn’t miss anything, so they were even more susceptible to feedback. I hugged him goodbye, his ear covered mine, and my hearing aid made a high-pitched noise (like when a microphone gets in front of a speaker). The guy pulled back and looked at me weird.

“Oh, could you hear that, too?” I asked.

“Yeah, what was it?”

I said, “I – AM – A – ROBOT,” and did the robot.

I thought it was hilarious.

During our chat, I jokingly ask Dr. Kirsch when I should tell a date that I have hearing aids. He sweetly says that I should tell them around the time we start to really care for each other. That’s great advice. 

More likely, I’ll end up stalling until a moment of natural clumsiness occurs, wherein my hearing aids will either fall out, or start blasting audible feedback. Ta-da! 

As un-cool as they may be at times, and even though my hearing loss isn’t as bad as most, hearing aids have changed my life. I believe that shamelessly showing your vulnerabilities can make you an even more likable person. Living honestly inspires others to live honestly.

That’s what Dr. Kirsch meant about being your authentic self. “You can't fully communicate who you are when you can't hear what people are saying to you. People won't listen if they feel like they aren't being heard.”

You strain to hear someone speak, you miss important words -- and as entertaining your shriek may be at the time -- you’re startled when you didn’t hear a friend walk in the room. You’re always on edge.

I hope this reaches people with hearing loss (I’m looking at you, dear friend in denial) and helps them in getting over the stigma and their hang-ups about looking old or handicapped; getting hearing aids can significantly improve your quality of life and how you communicate with the world. It also makes life a bit easier on your family and friends, too. 

Now, when I forget “my ears,” my friends notice. I’ll ask “What?” and they’ll say with a loving/scolding tone, “Are your ears in?”

Originally published on xoJane and republished here with their permission.

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Proud Grandparents

By Darel Sorensen, Ed.D.

When our grandchild Mikaela, now 15, was born, newborn hearing screening was not yet an option at their hospital in California. She was diagnosed with a sensorineural hearing loss at age 23 months, after we noticed she had delayed speech.

At age 2 she began attending an “early start program” and preschool at age 3. Two years later Mikaela was joined in preschool by her younger brother Christian Joseph (CJ), now 13. He had passed the newborn screening test, but by age 2 1/2 he began to lose his hearing. After an alert teacher suggested testing, CJ was also diagnosed with sensorineural hearing loss.

To attend school, Mikaela and CJ traveled for one hour each day. The bus ride is a long one for kids who are toddlers, but our anxiety was tempered knowing that Mikaela and CJ would be getting specialized assistance with their hearing, speech, and language skills as well as learning how to sign. It would help prepare them for mainstream school classes.

Before she was 3 years old, Mikaela had cochlear implant (CI) procedures in both ears. A few years later, also at age 3, CJ also received a CI for his left ear and a hearing aid in his right.

Since the deaf and hard-of-hearing (DHOH) program in their school district spans kindergarten through high school, they have benefited from learning communication and coping skills from the same DHOH and speech-language therapists as they got older. They know to ask to sit on the side of the classroom, so they can more easily rotate to face whoever is speaking, and to be specific about what part of a conversation they missed when asking for something to be repeated.

Mikaela and CJ - 2 1/2 and 1 years old

Thanks to this consistent help, Mikaela and CJ were able to be mainstreamed into their local schools. Now in middle school, CJ has tried his hand at sports and now plays clarinet in the marching band; he was also selected to play in the concert band. Mikaela has played on the school basketball team for four years and received this commendation from her DHOH specialist:   

“Mikaela exudes confidence in class, never shying away from raising her hand, offering her insights, speaking up about her ideas and opinions. She advocates for herself by talking with her teachers about what works best for her. She is energetic, personable, and hardworking. In addition to her own success, she looks out for her fellow hard-of-hearing peers in order to help them succeed as well.”

Recently there was talk that the DHOH program may be moving from its current locations. Mikaela was quick to contact the administration to tell them how much the program meant to her and to her success: “Both DHOH and mainstream teachers… helped me understand everything, and now I’m a straight-A student because of them,” she wrote.

“The DHOH campuses are safer, friendlier, and better than most schools…. If you move the program you’ll be losing the teachers, staff, and students who treated us like family [and] the hearing students at those schools will be losing the ability of learning another language (sign language) and being friends with the deaf. PLEASE KEEP THE PROGRAMS WHERE THEY ARE!! Thanks for reading.”

These steps toward self-advocacy, as well as their self-confidence and concern for others, will serve them well. We could not be more proud. We wanted to share this story about our grandchildren because we believe in HHF and its mission of research, education, and prevention of hearing loss.

Darel Sorensen, Ed.D., is a retired educational psychologist and director of special education services. He lives with his wife, Betty, in California. 

Take It From Me: Auditory Processing Disorder in Class

By Eliza Uberuaga

My legs grow tense as a classmate’s whispers flood my ears. My breath becomes short as another taps his foot against the desk. My stomach lurches as I watch two students turn in their tests. Why can’t I block out the noise? Why can’t I answer the questions faster? Why am I the only one struggling? I must run while they walk, work while they sleep and prepare while they rest.

When I was diagnosed with a learning disability, my parents brought me to the most respected doctors in New York and enrolled me at one of the most prestigious schools in the country. However, that did not cure, fix or help me. Why? Because no doctor, teacher, parent or friend can change the world that tells me I have a problem. I am labeled with Auditory Processing Disorder (APD), characterized as slow and viewed with pity.

I am not asking for sorrowful looks, sympathy hugs or uplifting pep talks. I am asking you to understand that the student in your classroom who needs extra time wasn’t daydreaming during the test. The girl who needs directions to be repeated is listening. The boy who is last to raise his hand has the answer.

These kids likely have APD, a learning disability that slows the comprehension of information. (It is also known as central auditory processing disorder, CAPD.) It is not their hearing that is impaired, but their auditory pathways. Information that is spoken can be difficult to process if said too quickly, in a loud place or in large chunks of speech. Having APD is like listening to a voicemail on a busy street while everyone else is listening to it in a quiet space. While most people can block out that background noise, people with APD hear that noise as if it is the message itself. When given directions, most brains organize the information, as if putting it into filing cabinets. Those with APD take longer to find the filing cabinets, which slows the pace at which they comprehend.

APD affects students in a variety of ways, but students with APD (and most other students) could benefit if we looked at our classrooms the way we look at our world: valuing everyone's uniqueness—in this case, the unique ways in which they learn. Here are some techniques that helped me.

1. Stimulate the Senses
   In an art history class, we learned about the making of a blind arch. Rather than looking at a diagram, my teacher had four kids (including me) make an arch with our arms. Putting pressure on our formation and watching it collapse taught us how to make the most effective structure. I learned about arches by listening, watching and feeling, as opposed to simply listening and writing.
   

2. Teach With Variety
   In a science class, my teacher gave us an outline of the notes, wrote them on the board and lectured us on them—supporting auditory, visual and kinesthetic learners. He allowed each student to retain the information in whatever ways that worked. In this class, no kid was left behind because every kid was supported.
   

3. Create a Quiet Learning Place
   In order for all students to be able to focus, especially ones with APD, it is best to minimize all noise when students are working or trying to concentrate. Although it may seem helpful to speak in a quieter voice, for a student with APD, hearing whispers while working can actually be worse than hearing words spoken at normal levels. Although it may seem helpful to speak in a quieter voice, it is best to not talk at all.

I hope that, by writing to teachers and sharing my story, I can help the 10-year-old girl who cries when she gets home from school and tells herself she will never be smart. Although she may not feel intelligent when she goes to the library to finish a test, she must understand that she does not have a problem. She only feels like she has a problem because the world around her is unable to understand her intelligence. The day will come when she feels the way she learns is truly all right, but maybe that day will come sooner for her than it came for me.

Eliza is a high school senior in the Bronx, New York. Originally published on Teaching Tolerance, and is reprinted by permission of the author.

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Sports Life in Silence

Chase Ross and his wife, Amy

The crowd is roaring, cheerleaders cheering, coaches are yelling and teammates are making play calls. As hearing impaired athletes, my sister and I did not necessarily hear all of this. Growing up in a small town atmosphere and loving sports, teammates and coaches found ways to communicate with us to ensure we were part of the team, part of the family, by making sure he/she was standing next to us when talking or giving us hand signals during play.

My sister and I were very fortunate to have a close, caring, understanding and loving family to help guide us through life. But they made sure we had to work for everything we earned and did not take anything else in life for granted, much less our hearing. My sister, who has cochlear implants, provided me with a great example of how not to let our hearing loss keep us from doing anything we dreamed. Growing up she was very active with sports. Even as she went on to college, she was a football cheerleader while earning her degree.

Growing up I had a strong passion for playing sports – football, basketball, baseball and track. Sometimes the sweat would get into my hearing aids causing them to not work correctly and I would still have to play parts of games without hearing – relying solely on reading lips and using hand signals that our team had put together for such cases. It was a challenge that my teammates had recognized. That is when you learn to connect with friends, family and teammates on a new level.

To help bridge that gap, last year I founded Sports for Sound, a non-profit entity designed to raise funds and help hearing impaired patients who need financial assistance with obtaining new hearing aids, molds, FM systems for the classrooms or whatever his/her needs may be. After making appointments with my audiologist and needing new hearing aids for the first time since I have been on my own, it hit me how costly they can be, even with insurance. This is what motivated me to want to help those who may need assistance.

To help better educate the participants with hearing and show them why hearing is truly important, participants in the running events must wear ear plugs. This helps the participants better understand what hearing impaired people go through and how much we need to rely on our other senses.

Our first year (2014) was dubbed a success raising over $23,000 and providing assistance to 10 applicants. In 2015, 2015 we raised $18,000 & we were able to provide new hearing aids to 8 recipients. Sports for Sound is having its 3rd annual event on May 21st, 2016 at the Eastern Ohio Sports Complex in Sherrodsville, OH. The event is held in May to coincide with “Better Hearing & Speech Month.” This year our event will feature a 5K obstacle run, 10K road run and 5K cross country walk. The event will also have food, raffles, silent auction and a Chinese auction.

Chase Ross is the founder of Sports for Sound. His goal is to grow SFS to help assist hearing impaired patients beyond its established location, Tuscarawas County, OH., all while giving participants the experience of being hearing impaired while participating in SFS events.

Hearing Loss vs. Dizziness: If I Could Choose!

By John V. Brigande, Ph.D.

I was about 9 when hearing loss in my left ear was first detected. The audiologist explained to me that as a result, I may not be able to hear birds singing as easily, and that I may need to concentrate more to understand words starting with “sh,” “k,” or “t.” Sensing my alarm, she tried to reassure me by saying it was unlikely that the hearing loss would affect both ears, and if it did, it would likely not be to the same extent.

Managing the loss of a primary sense is all about adaptation. In grade school, I simply tilted my right ear toward sound sources. Over time my hearing loss became bilateral and progressive, and its cause remains unknown. In graduate school I began using hearing aids and later received a cochlear implant in my left ear. I continue to use a hearing aid in my right ear, and thankfully for the past eight years, my hearing has remained stable, if stably poor.

I have always compensated. At Boston College (where I received my undergraduate, Master’s, and Ph.D., all in the biological sciences) I sat in the front seat of my classes, as close to the speaker as possible. I asked my professors and classmates to face me when they spoke so I could use visual cues to enhance oral comprehension. During postdoctoral training in auditory neuroscience at Purdue University, I was given complimentary assistive listening technology upon my arrival to the lab.

While I do not consider my hearing loss to be a profound limitation personally or professionally, it has certainly sculpted my career path. When picking my area of scientific focus, I settled on a career in auditory neuroscience to better understand hearing loss.

I also reasoned that the auditory research conferences and meetings I’d be attending would likely have assistive listening technology to allow me to participate more fully. I have benefited immeasurably from the scientific community that makes up the Association for Research in Otolaryngology, whose meetings have world-class assistive listening technologies and interpreter services plus overwhelming support of members who have hearing loss.

As I entered my 40s, I experienced vertigo for the first time. The clinical data do not fit with a diagnosis of Ménière’s disease, and the link between my vertigo and hearing loss is unclear.

When I have an acute attack of dizziness, my visual field scrolls from right to left very quickly so that I must close my eyes to avoid profound motion sickness and vomiting. I must lie down until the dizziness subsides, which is usually 12 to 16 hours. I honestly cannot do anything—I can only hope to fall asleep quickly.

Vertigo is a profound limitation for me. With no disrespect or insensitivity intended toward the hearing impaired community—of which I am a passionate member—I would take hearing loss over vertigo in a heartbeat. Dizziness incapacitates me, and I cannot be an effective researcher, educator, husband, or father. Some people perceive an aura before their dizziness occurs, but I do not get any advance warning. Unlike hearing loss, I cannot manage my dizziness—it takes hold and lets go when it wants to.

I recall one episode especially vividly. I was invited to give a seminar at the National Institute on Deafness and Other Disorders (NIDCD) and experienced a severe attack just hours before my flight. Vertigo forced me to reschedule my visit, which was tremendously frustrating. That night, I slept in the bathroom (my best solution when vertigo hits). Vestibular (balance) dysfunction is quite simply a game changer.   

A satisfying part of my research involves trying to define treatments for hearing loss and dizziness. Usher syndrome is a condition combining hearing, balance, and vision disorders. In Usher syndrome type 1, infants are born deaf and have severe vestibular problems; vision abnormalities appear by around age 10. In working with a group of dedicated colleagues at various institutions, we have evidence that fetal administration of a drug in mice with Usher syndrome type 1 can prevent balance abnormalities.

As part of HHF’s Hearing Restoration Project (HRP) consortium, I have been working on testing gene candidates in mice for their ability to trigger hair cell regeneration. This research is exciting as it is leading the HRP into phase 2 of its strategic plan, with phase 3 involving further testing for drug therapies. The probability is that manipulating a single gene will not provide lasting hearing restoration, and that we will need to figure out how to manipulate multiple genes in concert to achieve the best therapeutic outcomes.
It is an exciting time to be a neuroscientist interested in trying to find ways to help patients with hearing loss and balance issues. I am hopeful that we will make progress in defining new ways to treat and even prevent vertigo in the near future and ultimately to discover a cure for hearing loss and tinnitus.

Hearing Restoration Project consortium member John V. Brigande, Ph.D., is a developmental neurobiologist at the Oregon Hearing Research Center. He also teaches in the Neuroscience Graduate Program and in the Program in Molecular and Cellular Biology at the Oregon Health & Science University.

Your financial support will help ensure we can continue this vital research in order to find a cure for hearing loss and tinnitus in our lifetime. Please donate today to fund the top scientific minds working collaboratively toward a common goal.For more information or to make a donation, email us at development@hhf.org. 

Your help provides hope.

Do You Hear That?

By Kailey McGarvey

Do you hear that?

Imagine hearing a high-pitched noise, constantly, throughout the day and night. It follows you everywhere. Silence is a luxury that does not exist.

This is tinnitus.

In 2011, I developed tinnitus in my right ear, after a head cold. I vaguely noticed it, and thought it was something that would go away after my body had fully recovered. After a few months, my doctor told me I was completely healthy. But why was I still hearing that annoying sound?

At this point, the ringing in my ear was so faint that I could only hear it in complete silence. It was just a mere annoyance that could be easily covered up by any other sound, so I didn’t take it too seriously. I had some ENT and neurological tests done just to be sure that the tinnitus wasn’t a symptom for something bigger, which it wasn’t. So it was never more than a mild concern—until I woke up one morning in 2013 with an even higher pitch ringing in my left ear.

This was solid proof that something was happening and that it had the potential to worsen. I went through a second round of ENT and neurological testing to check for new developments. The ringing had become louder and took more effort to ignore. Again, the tests showed nothing abnormal. This was good, but I was told nothing could be done about the distracting sounds in my ears.

My tinnitus began to consume a greater amount of my focus, my energy, and my thoughts. My anxiety skyrocketed with thoughts of how it could progress and what it would mean for me in the future.

During the summer of 2015, my tinnitus worsened, again. Listening to music is one of my favorite pastimes, but now I hear sounds of high-pitched feedback during certain chords in songs. This is particularly devastating—my tinnitus has distorted how I hear music. It was then that I made a decision: Since throwing my energy into finding answers from doctors was obviously not proving productive, what would be a better outlet?

After some brainstorming, I decided that my “outlet” would be fundraising for tinnitus. I have always been involved in community outreach, and have been working as a finance assistant for a congressman. This would be my opportunity to manage my own fundraiser, while raising funds for a cause very important to me. With my recent move to Long Beach, New York, I had access to a beautiful boardwalk. I decided the fundraiser would start in my back yard with snacks and drinks, and once everyone arrived we would walk the boardwalk.

I chose Hearing Health Foundation (HHF) because their focus is on research. Research is where we will find answers about hearing loss and tinnitus; research is what will move things along. We are so close to finding answers. Since tinnitus is an invisible condition and it does not directly affect your health, it has historically not been taken seriously, but it is (slowly) becoming a “mainstream” condition. I hope this will lead to more people taking an interest in funding tinnitus-focused research, such as the science that HHF is funding. Greater funding will help accelerate the pace toward a cure.

I was lucky—the Saturday of the fundraiser was a beautiful and warm October afternoon. I had set a goal of $1,000 and asked for $35 per person. Those who couldn’t make the fundraiser were asked to donate online. I ended up with 23 people in attendance and $1,120 in contributions. It ended up just being a fun social gathering of family and friends. Dollars for Decibels was a success! Not only was I able to raise money for the organization, but the fundraiser itself reinforced the extraordinary support system I am grateful to have around me.

In addition to fundraising, I can also use my time to educate others and help the tinnitus community as a whole, rather than just trying to find answers for myself. It is important to educate the younger generation about the harmfulness of noise. Hearing conditions and hearing loss are seen as “problems for old people”—but this simply isn’t true. Hearing loss and tinnitus can begin at a young age and when the cause is excessive noise, it is entirely preventable. I was just 20 when my hearing became noticeably affected.

It is tempting to search endlessly for some sort of miracle drug, or to feel discouraged when nothing seems to work. But remember that everybody has some issue, and if (loud) ringing in your ears is your biggest problem, perhaps you are lucky. There is no operation or amount of medicine that can provide the same relief as the support and love of friends and family.

The outreach and education among my friends is working. Just last week, one friend decided that we shouldn’t go to a certain bar because it is always “way too loud.”

Tinnitus and hearing loss can be debilitating. Still, as with all chronic conditions, there are good days and there are bad days, but there are always good days ahead.

Interested in hosting a fundraising event to benefit HHF?  

You're in luck! You can create a  giving page and help us raise funds to cure hearing loss and tinnitus.

Need some ideas?  See examples of past events and ideas for creating an event. There are many different ways to create your own fundraising event from golf outings and bake sales, to birthdays and weddings, to marathons and triathlons. Let your talents and interests lead you to your own fundraiser for HHF! No event is too large or small.

In three easy steps, you will be on your way:

1. Register

2. Create your Giving Page

3. Share with Family and Friends and ask for their support

Get Started!

Have questions or need help setting up your fundraiser?  Email fundraise@hhf.org or call (212) 257-6140.

Handicapable

By Kate Yandell

Dominic Pisano hadn’t even arrived on campus to start his freshman year at Johns Hopkins University when he got his first email from biomedical engineer Tilak Ratnanather. He had heard Pisano was deaf and wanted to meet with him. Ratnanather, who has been deaf since birth, showed up for the meeting accompanied by a second deaf student who would later become a doctor. “He was, like: ‘Here’s my deaf army,’” Pisano recalls.

Soon, Pisano, a soccer enthusiast from Ohio, was interpreting magnetic resonance imaging (MRI) in Ratnanather’s department. When Pisano decided he wanted to go to medical school, Ratnanather was ready to introduce him to his wide network of friends in the otolaryngology department at Hopkins. Pisano assisted in MRI research at Hopkins for a year before attending Tufts University School of Medicine in Boston.

“I’ll be honest with you, if it weren’t for Tilak I probably wouldn’t have gone to medical school,” says Pisano, now a resident in anesthesiology at Tufts Medical Center. “I probably wouldn’t have done biomedical engineering research. Most importantly, I probably wouldn’t have the kind of network I have.”

Photo: Tilak Ratnanather

Courtesy Johns Hopkins School of Medicine

It was this kind of service that won Ratnanather the Presidential Award for Excellence in Science, Mathematics, and Engineering Mentoring this past March. Over the years, Ratnanather has lobbied for better resources for deaf attendees at conferences, organized annual dinners for deaf researchers, helped award scholarships to hearing-impaired students through the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell), and mentored more than a dozen hearing-impaired students.

“He’s by nature the most gregarious and extroverted individual,” says Howard Francis, a professor of otolaryngology at Hopkins who has known Ratnanather for 23 years. “He has a sense of mission and is committed to making it possible for others to achieve what he has achieved.”

“A lot of people have a hard time understanding him [due to his deafness-related difficulties with speech],” says Pisano, “but despite that, they still enjoy his company, and they want to be connected with him.”

Ratnanather was born in 1963 in Sri Lanka with profound hearing loss of unknown origin. His family moved to London when he was 18 months old, and he grew up wearing hearing aids and attending the Mary Hare School for Deaf Children.

Ratnanather’s parents, a pediatrician and a computer systems programmer, had high hopes for their son. “My father and I would talk about mathematics and would go through some problems at home,” he says. “I had an aptitude, and then, of course, I would go to the science museum and learn about famous mathematicians.” Ratnanather enrolled at University College London, where he met mathematician Keith Stewartson, who immediately made the young undergrad comfortable about his hearing loss and the assistive technologies he needed to use in the classroom. “I knew he would make my life easy,” says Ratnanather. “I didn’t have to worry about my deafness.”

Tragically, Stewartson died suddenly at the end of Ratnanather’s first year at university. But the young student forged ahead, and after doing some reading about Stewartson’s research on fluid dynamics, Ratnanather went on to study the subject in graduate school at the University of Oxford, receiving his D.Phil. in mathematics in 1989.

Up until that point, Ratnanather had only had occasional opportunities to learn about an area near to his heart: hearing research. This changed after he attended a research symposium at the 1990 AG Bell Convention in Washington, D.C. Fascinated by the work of William Brownell, Ratnanather approached the Johns Hopkins researcher after Brownell had given a talk about outer hair cell electromotility—the process by which these sensory cells shorten or lengthen in response to electrical impulses.

When outer hair cells change shape, they transmit mechanical force to the cochlea, amplifying the ear’s sensitivity to soft sounds at specific frequencies. Forces transmitted through pressurized fluids in outer hair cells make electromotility possible, explains Brownell, who is now at Baylor College of Medicine in Houston. He needed someone who could model the dynamics of fluid within these tiny spaces. “Tilak had the computational tools to begin to study this,” Brownell says.

Ratnanather began a postdoc in Brownell’s lab in 1991. During his postdoc, he realized he could bestow upon students the confidence his mentors fostered in him. The Internet helped him reach out to other deaf people through newsgroups. Lina Reiss, who had severe hearing loss by age 2, first met Ratnanather when she was an undergraduate at Princeton University and he replied to an online post in which she introduced herself to one of these newsgroups.

The daughter of two Ph.D.s, Reiss had always known that she wanted to go into the sciences. But she was not sure what career would be possible with her hearing loss. “I didn’t have any role models of what it was like to be a deaf faculty member,” she recalls. “Until I met [Tilak and some of his deaf friends], I couldn’t imagine becoming a professor.”

Ratnanather helped get Reiss a summer internship in the hearing-research lab of a colleague at Johns Hopkins, where she studied how neurons in the brain stem encode and process sound. Enthralled with the research, she went on to do her Ph.D. in biomedical engineering in the same lab. She is now an assistant professor at Oregon Health & Science University in Portland researching how hearing loss, hearing aids, and cochlear implants influence the way people perceive sound.

Ratnanather now primarily does brain-mapping research focused on understanding how brain structures are altered in people with diseases such as schizophrenia, Alzheimer’s, and bipolar disorder. But hearing science continues to influence his work. He has published several recent studies on fluid dynamics and hair cell function and has upcoming papers on imaging the auditory regions of the brain in deaf adults and babies.

And, spurred partly by his own cochlear implant surgery in 2012, Ratnanather has created an app for adults learning how to hear following the surgery. Called Speech Banana, the app is named after the banana-shaped region in an audiogram that contains human speech.

More than just providing professional connections, Ratnanather has influenced how his former students navigate the world. Being deaf can make it scary to think outside the box or challenge opinions, Pisano says.  Ratnanather encourages his mentees to keep an open mind and engage with others—hearing and nonhearing alike. “That helped shape my mentality about life in general today,” Pisano says.

Reprinted with permission. "Handicapable" originally appeared in the October 2015 issue of The Scientist, a special issue devoted to hearing research. The article can be accessed online here. See also The Scientist’s Facebook page, where this article generated many comments.

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Hearing Health Foundation is thrilled that Tilak Ratnanather, D.Phil., received this outstanding honor and recognition from the White House for his mentoring efforts. Ratnanather was a recipient of an Emerging Research Grant (ERG) in 1993, and has continued to champion HHF and its mission to prevent and cure hearing loss and tinnitus.

Dominic Pisano, M.D., who is quoted in this article, served on HHF’s inaugural National Junior Board (now known as HHF’s New York Council) in 2012. He has written about his decision to get a cochlear implant (CI) on our website and the tips and tricks he used to succeed in medical school in our magazine, and he appeared in an HHF public service announcement.

Also quoted in the article, Lina Reiss, Ph.D., was an ERG recipient in 2012 and 2013, and went on to win funding from the National Institute on Deafness and Other Communication and Disorders. She cowrote a piece about hybrid CIs and the way they make use of residual hearing ability. HHF congratulates all for their achievements!