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.”

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.