What I Didn't Expect About Raising a Hearing Child as a Deaf Woman

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For a hearing person, the question of whether they’ll raise a hearing or deaf child may not even cross their mind.

Yet, for me, I wondered about raising a deaf child growing up. Having a deaf family to call my own.

Elizabeth Edgar’s daughter, Coral
Elizabeth’s daughter, Coral.

I knew I would more likely have a hearing child due to my family genes. I was born hearing. If I wanted a deaf child, I would have to be with a deaf guy with a multi-generational deaf family. Mr. Tropical, my daughter Coral’s dad, is deaf and has a deaf family, however, his extended family is all hearing.

With our families’ histories, our odds of having a deaf child is probably 50 percent.

When I was pregnant with our daughter, it didn’t matter if she was born hearing or deaf. I wanted a screaming healthy baby.

I knew she could hear. Mr. Tropical knew, too. We assured each other that we would be thrilled either way. She turned her head toward any type of noise. She jumped and wailed when an object crashed onto the floor.

They whisked her away to do a hearing test, and Mr. Tropical went with her. He came back to my recovery room and signed a form that she had passed the hearing test. Her hearing was perfect. The nurse was ecstatic.

The term “passed” stood out to me. It felt like she had won a prize and we should celebrate. For deaf children, they “failed” the hearing test, so should we be miserable? You might think by now they would have said something different, such as simply state their hearing levels or say, “Your baby is hearing” or “Your baby is deaf.”

Back to the point.

The fact that we now had a hearing child was scary. I was nervous about what the future held for us. When we finally felt adventurous enough to go out in public with a tiny newborn, we were worried about the fact that she would be wailing and feeling hot. She was born in June in hot and humid Florida. We went to Target to buy postpartum care items for me and to do some food shopping.

An elderly woman approached us to peek at our tiny newborn. She chatted about something. We pointed to our ears and shook our heads. She recognized we were deaf then she pointed to our newborn and moved her lips to say, “Can the baby hear?” I nodded my head and the relief came across her face. It was very apparent. She was delighted and clapped her hands. We didn’t know what to do except to smile. After that experience, I had mixed emotions.

Of course, I’m happy my child is hearing. She is a healthy child with no disabilities or issues. She may never experience the challenges I went through. She will likely be able to attend any kind of school and be able to get any kind of job. She’ll be able to go on living her life without the barriers I faced. She won’t face the same oppression, discrimination and audism.

I knew I would be able to teach my deaf child how to face those challenges, how to survive the struggles, how to break down the barriers and how to stand up for himself or herself. I knew I would be able to handle the big responsibility of protecting my deaf child and provide resources to give him or her the best future possible. I wouldn’t be scrambling all over the place, learning to sign, learning about the deaf community and learning to love and accept my deaf child because I was already there. I was ready and armed with resources, the deaf community/culture and love and acceptance.

I realized it didn’t matter if I had a hearing or deaf child. Her childhood will be exactly the same. Her lifestyle. Our home. How we raise her. All the same.

Coral is bilingual in American Sign Language and English. She is involved with both hearing and deaf worlds. She is an observant child, relying on her eyes along with her ears to communicate and learn. Since she was born, she enjoyed looking at me when I sign. She is a part of the vibrant and diverse deaf community that many people don’t get to experience while being a part of the hearing world without any language barriers.

It has been a blast watching Coral talk to her toys, dance to the music, search the sky for an airplane flying over, mimic the dogs’ barking and copy my voice.

I’m already learning new things from her. I learned what would wake Coral up from a deep sleep. I learned she will alert me of the oven or the microwave beeping. I learned that some doors creak while others don’t. I learned she will ignore me when I call her name but come running when I open a bag of pretzel sticks. I learned she can hear the “Let It Go” song from the TV outside because she will run inside and start dancing.

I consider myself the lucky one to raise such a child.

Follow this journey on Mommy Gone Tropical.

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10 Ways to Know You Grew Up With a Deaf Mom

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Growing up, my family was unique because while my dad could hear, my mom was deaf. She wasn’t just a little hard of hearing, she was profoundly deaf, which means we could shout behind her back and she would not hear a word. Not that my sisters and I ever tried that…

My mom used a combination of sign language and lip reading to communicate, but her speech was so good that often people didn’t believe she was deaf.

When people ask me what it was like growing up with a deaf mom, I always answer that it felt pretty normal to me because I didn’t know anything else. Aside from a few assistive devices, such as flashing lights to indicate the phone or doorbell were ringing, a TDD and a specially trained hearing ear dog, our family operated just like everyone else’s. As a kid, I naturally learned to make accommodations for my mom. I don’t remember being told she couldn’t hear or that I needed to look at her and talk slowly; that’s just what I always did. I knew she couldn’t hear me calling from another room so if I needed something, I had to go and find her. I learned sign language and interpreted for her in situations when lip reading was impossible.

While I was aware that people viewed my mom differently because of her deafness, I always assumed I appeared the same as my peers. I figured no one would ever guess I grew up with a deaf mom. Over the years, my husband and kids have pointed out that this assumption is not exactly true. Apparently, there are some things I do that are obvious remnants of being raised by a deaf mom. I thought these quirky habits were unique to me, but recently, I found out there is a name for people like me, who grew up with deaf parents. We are called CODAs (Children of Deaf Adults), and it turns out many of us have had similar experiences and even developed some of the same habits.

Here is my list of 10 ways you know you’ve been raised by a deaf mom .

1. You are patient — with people who ask questions about deafness.

Can your mom read? Yes.

Do deaf people drive? Of course!

Does your mom know Braille? No, that’s for blind people.

Can deaf people have children? Well, she is my mom.

2. You can curse like a sailor in sign language, and no one ever suspects that you are swearing.

You might even get comments on how beautiful sign language is.

3. You always let someone know when you are going to take a shower. 

This was a requirement at my house — otherwise my mom would call for us and when we didn’t go to her (because we were soaking wet and naked), she would get worried. My kids picked up this habit too, and I don’t think they even know why they do it.

4. You wave goodbye using the “ I Love You”  sign, and you teach your husband and kids to do the same.

Your family looks like a bunch of groupies at a rock concert when someone is leaving the house. Rock on!

5. You always watch TV with the captioning on, and you can’t stand it when people cover their mouths when they talk, even though you can hear just fine.

jennifer and her mom

6. You catch yourself using sign language to count or spell a word out loud, to emphasize your point or to sing along to music on the radio.

(Oh yeah, and refer back to #2.)

7. You forget you can call to your children from another room, and instead you flash the lights on and off to get their attention, just out of habit.

8. You teach your kids sign language and use it to discipline them discreetly in public.

9. You still mispronounce some words because that’s how your mom said them.

10. You proudly use your story of having a deaf mom for party icebreakers, college essays and even for blog posts…

You know, it’s a topic that always gets people asking questions.

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Learning to Accept My Hearing Loss as a Child

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Attention deficit. Developmental delays. Processing disorder.

These were the words my parents heard about me from a half dozen doctors, audiologists and speech-language pathologists. But both my parents (and my grandmother) work in the medical field, and these diagnoses just didn’t fit what they saw: When my attention was grabbed, I had no issues sitting still or focusing. Simply put, I was not speaking or responding to sounds.

After 18 months of being tested and retested, with one misdiagnosis after the next, someone advised my mother to take me to the school district for testing. This was after a year’s worth of constant speech and language therapy. Fearing I would be labeled, my mother initially objected but eventually she relented, and within minutes of my being tested, the school district informed her I had hearing loss. I was 3 and a half at the time, and this was only the beginning of a long road ahead.

The diagnosis finally made sense. The doctors started talking about hearing aids, schools for the deaf, and sign language, telling my parents I would never be able to function in the hearing world. My parents were devastated — their world was flipped upside down.

Like 90 percent of other deaf or hard-of-hearing children, I was born to parents with typical hearing (their eyesight, that’s another story). I thank my grandfather for giving my mother this advice: “If you don’t try teaching her language now, you’ll never know if she’s capable or not.” From that day on, my parents were determined to have me learn to listen and talk. If I failed, I would have failed trying.

Around this time, I started preschool. My first year, I was in a predominantly deaf and signing class, and I was one of three students with hearing loss. I was not learning spoken language or socializing with children who were oral.

For my second year of preschool, my parents enrolled me in a language-delayed class with verbal students for half the day and, for the other half, in a typical, mainstreamed preschool. The school district was not supportive — mainly because they would lose funding if I was not in a deaf class. They even threatened legal action, but my family did not care and was prepared to fight. Luckily it didn’t come to that. I attended the language-delayed class for half of the day, and the other half I attended mainstream preschool classes. I was just fine and remember loving school.

When I started kindergarten — with new kids at a new school — things were less seamless. Socializing with my peers didn’t come as naturally as it did in preschool. The first few days were tough, and I went home and cried; I felt scared and lonely. I also remember feeling different because people were asking about my hearing aids, and for the first time, I had to answer these questions alone. Fortunately, my older brother came to the rescue. He taught me how to introduce myself to people and make conversation. I remember we sat in my room practicing for hours after school, until my skills were perfected. This was the beginning of learning to accept my hearing loss.

One of the more difficult questions I had to answer was what “those things in my ears” were. I was frustrated that it seemed that people of all ages and backgrounds didn’t understand why I needed hearing aids and asked repetitive or invasive questions to point out what was different about me. Now that I’m older, I realize many were asking about “those things in my ears” not to belittle me. They simply were uninformed and trying to understand what I endure on an everyday basis. (Of course some were just bullies.)

For a large part of my youth, it felt like the world was staring at my ears. Self-conscious, I kept my hair long to cover my hearing aids. I was also tall for my age (still am at 27) and the only one in my class with red hair. I always loved my hair color, but sometimes felt I stuck out too much. Over time I began to slowly comprehend that being different was not always a bad thing.

Sometimes I would wonder, Why me? But then in young adulthood I started to realize how lucky I am; having to overcome so many obstacles helped me develop a better understanding and appreciation of life and the struggles that come with it. Gradually I became more and more comfortable with my differences.

I learned to take ownership of my disability, and encouraged others to do the same. I want to dedicate my life to contributing to the hearing loss community on a daily basis, rather than only through a few independent experiences.

My hearing loss is part of my life, but it does not control my life. In high school I started a website, “Hears Help,” to provide a means for children and young adults with hearing loss to get advice about social and academic issues via an anonymous and confidential email exchange. After a few inquiries from parents, I expanded this service to caregivers, who emailed my mother a range of questions about audiologists and educational services. Hears Help was the support network that both my mother and I wished we’d had when I was young.

When I was a sophomore at Barnard College of Columbia University, my audiologist, Jane R. Madell, Ph.D., fitted me with Phonak Naída hearing aids, and the company asked me to be filmed in videos tracing my adjustment. These videos, which focused on my life and struggles as an adult with hearing loss, influenced thousands of other adults and healthcare professionals, as well as the general public. The videos went beyond YouTube (with more than 50,000 views) and are used at medical conferences and doctors’ offices around the country. (A family friend once saw my picture in a Phonak brochure at an audiologist’s office in my hometown. Over seven years later, I’m still hearing about it!)

In 2014 Dr. Madell asked me to appear in her documentary on hearing loss. I had the opportunity to share an even greater part of my story, including some of my struggles entering a down-market workforce with the added pressure of having a disability. Dr. Madell has nearly five decades of experience with pediatric hearing loss, and I attribute a large part of my success to her.

When I taped my story for the documentary, Dr. Madell instantly knew something was not right; as someone who watched me grow up, she knows me, my tone of voice and my demeanor almost too well. I once thought of becoming a lawyer — a direct result of my parents’ early advocacy efforts. Through talking with her about my job, life, and career aspirations, we both came to the conclusion I needed to make changes to feel fulfilled and happy.

All my life was about ensuring I didn’t miss a beat in class, that my 3 and a half years without spoken language didn’t have an impact on my understanding of the world around me. I always had a set goal of getting from A to B, with the help of my family and constant language training. Suddenly I was free to pursue a life and path of my choosing in an unaccommodating, unforgiving world. I was unprepared for that moment.

There was one common denominator that Dr. Madell and I uncovered: I am happiest when helping others. I realized I wanted to dedicate my life to contributing to the hearing loss community on a daily basis, rather than only through a few independent experiences.

I had spent a large part of my academic career studying disability as it pertains to labor, employment and reasonable accommodations in a variety of situations. One of the most disconcerting things I learned was that the very policies that are supposed to help individuals with disabilities gain equal access have instead continued to put them at a disadvantage. I want to change that.

After Dr. Madell helped me define my life goals, I reached out to various hearing loss associations with a presence in New York City, where I live. As a member of Hearing Health Foundation’s National Junior Board (now New York Council), it was natural that HHF was one of the first organizations I contacted. I never imagined the timing would be serendipitous; with my background in corporate marketing and public relations, I landed the communications and programs position. I have been in my role a little over a year, and I am privileged to work with an amazing and dedicated staff and volunteers, both at HHF and other organizations, who are working to make all of our lives better.

On those occasions when I’m sick and tired of having a hearing loss, I sing myself the refrain from a song by Chumbawamba: “I get knocked down/But I get up again/You’re never going to keep me down.” Because it’s simply the truth.

Laura Friedman is Hearing Health Foundation‘s communications and programs manager and serves on the NYC Mayor’s Office for People With Disabilities (MOPD)’s Disability Youth Council.

This article originally appeared in the Spring 2016 issue of Hearing Health Magazine and was republished with permission of the author.

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What Wikipedia Can’t Teach You About Deafness

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The Wikipedia entry on deafness will give you the definition; signs and symptoms; causes; diagnoses; prevention; treatments and more. These are all from the medical perspective of being deaf, with a small “d”, and don’t show you the full story of a Deaf person, with a capital “D”.

What’s the difference between deaf and Deaf?

People who are “deaf” don’t necessarily associate with other members of the deaf community, usually don’t sign, strive to fit in more with hearing people, and identify their hearing loss in medical terms only.

People who are “Deaf” identify themselves as culturally deaf and have a strong Deaf identity. They usually come from a School for the Deaf, are fluent signers, and are heavily involved with other Deaf people, clubs, and events. These Deaf are proud of their Deaf Culture, and believe they are not “broken” and don’t need to be fixed by the medical community.

What is Deaf Culture?

Deaf culture centers around American Sign Language (ASL) and their identity and unity with other people who are Deaf and hard of hearing, hearing signers, and C.O.D.A.s (Child of Deaf Adults). It focuses on what deaf people can do, instead of focusing on the ability to hear or speak. Dr. Barbara Kannapell (a deaf professor at Gallaudet University) explains it this way:

“Deaf culture is a set of learned behaviors and perceptions that shape the values and norms of deaf people based on their shared or common experiences.”

What’s it like being deaf?

This is hard to answer, because each person experiences life differently. Their experiences vary greatly depending on whether their family communicated orally or in ASL; whether they were mainstreamed or went to a Deaf school; whether they can hear some, speak, lipread and many other variables.

That said, there are several experiences that are common among deaf people:

  • Being in a hearing family (more than 90 percent of deaf children are born to hearing parents). Whether the parents sign or not, deaf people may get left out of family gatherings, conversations, and news. They may rather avoid these situations, or isolate themselves and entertain themselves.
  • When a deaf person is trying to be involved in a hearing group’s conversation and they’ve missed something, they’re often told “Never mind”, “I’ll tell you later”, or “It wasn’t important”. This is a major pet peeve among many deaf people; it’s dismissive and belittling.
  • When some people find out that a person is deaf, their expectations of that person drop substantially. Then they’re surprised when they discover that the deaf person actually has a higher education degree, a job, is married or has children. The ability to hear or speak does not correlate to intelligence or comprehension.
  • People, especially in the medical community, inquire why we don’t get “fixed”. Hearing aids or cochlear implants are a personal decision and no one’s business. If the deaf person does have a hearing aid or C.I., people wonder why it’s not a cure and we still struggle with hearing and speech discrimination.
  • Deaf people have to tolerate the barrage of questions from ignorant people. Stupid questions like “can you read and write?” or “can you drive?” Just because they’re missing a sense, that doesn’t mean they can’t function on a daily basis.
  • Deaf people face a lot of discrimination. Ignorance, low expectations, assumptions, and apprehensiveness can interfere with a deaf person’s life. They face barriers to education, employment, health needs, and daily living.
  • Deaf people get “pigeon-holed” together. The general public assumes that if you meet one deaf person, you’ve met them all. They get pre-judged based on the actions of other deaf people before them. There have been cases of Deaf people getting barred from getting a hotel room because some other deaf people before them trashed the place.

The “Bright Side” of Deafness

The previous bullets listed a few of the hardships of Deafness, but there’s a multitude of positive realities of being Deaf.

  • Having a beautiful and rich language in ASL. ASL is not a “translation” of English; it has its own grammar, syntax and rules.  It uses the full range of hands, facial expressions and body language to convey its message.
  • Bonding with other Deaf people in a tight-knit community. Being part of a “small world” gives Deaf people a sense of belonging and a barrier-free environment to communicate, express themselves, share information, and thrive.
  • Having a strong tradition in poetry, storytelling, art, and film all done in Sign Language.
  • Being more visually keen. Deaf people rely on and interpret the world around them through their eyes. They “notice” more going on around them visually. It’s been proven that Deaf people are better drivers because of this.
  • Deaf people can “tune out” their surroundings as well. Noise doesn’t bother us. Those who wear hearing aids or a cochlear implant can take them off for some silence.

Every Deaf person is unique, but there is one thing we all have in common:  we want to be treated with respect. We have families, friends, communities, and lives that are just as fulfilling as those of anyone else.

We may be different, but we are no less equal.

Follow Tracy’s journey at Deafblind Confessions.

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Deaf 'Dancing With the Stars' Contestant's Old Speech Teacher Sends Apology Text

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You may remember Nyle DiMarco as the first deaf contestant to appear on “America’s Next Top Model” last August. (In case you missed it, he won.) In early March, he announced he’d be competing on this season of “Dancing With the Stars,” which premiered this week.

After a stellar performance with partner Peta Murgatroyd, DiMarco shared a text on Twitter that his childhood speech teacher sent his parents:

 

 

The text read:

Good morning,

I just want to tell you that your son Nyle was amazing last night on Dancing with the Stars!!! I am in awe of him.

I owe him an apology. I suggested he try hearing aids, I guess I will always be a speech teacher… Lol

But he showed me I am so wrong, he did his dancing without any difficulty.

He has become a role model for every deaf person. He showed they CAN!!! Congratulations, I have a good feeling that he can win the Mirror Ball!!!

You must be busting with proud and joy!!!

Oops pride and joy!!! Haha teachers make mistakes too!!!!

“Touching msg from my speech teacher when I was five. No right or wrong. It’s important to teach ASL (American Sign Language) & English equally,” DiMarco tweeted with the text screenshot.

Watch DiMarco’s performance below:

Lead photo via DiMarco’s Instagram.

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11 Things I Wish People Understood About Being Deaf or Hard-of-Hearing

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Next time you encounter a D/deaf or hard-of-hearing person, keep some of these facts in mind for successful communication. They may thank you for it!

1. Yes, we can still drive.

We only have problems with our ears. In fact, many deaf people are naturally observant, and they can be great drivers.

2. Some D/deaf people can speak.

Just because a D/deaf person is not speaking doesn’t mean they are incapable of doing so. Speaking is a choice for many deaf people, as some prefer to communicate via American Sign Language (ASL) only. Sign language is not universal. Some other forms of sign language include British Sign Language  and French Sign Language.

3. Some can still hear.

Hearing loss is a spectrum. Some people like me cannot hear anything without cochlear implants. My dad and brother, on the other hand, can hear some with the help of hearing aids. Then you have people whose hearing loss is so mild they may not even realize it.

4. A lack of hearing does not necessarily mean lack of intelligence.

While there are some syndromes that may be associated with hearing loss and intellectual challenges, the sky is the limit for D/deaf and hard-of-hearing people. Deaf people can go to school to be doctors, lawyers, teachers — just about any profession imaginable! There are some restrictions with certain jobs in the military or law enforcement, to name a few (for safety reasons). I always tell the children I meet who are just like me to “Keep your chin up and charge the mountain!” and never let someone tell you that you can’t do something  because of your hearing loss.

5. Communicate with us directly when possible.

We know it may be tempting to look at our interpreters or family members to help communicate, but we often want to communicate with you. We are still humans with feelings and communication capabilities. Some suggestions for communicating include: a pen and paper to write things out, gesturing, basic sign language (if you know it!), and if absolutely nothing else is a possibility for communication, we can attempt to lip-read. However, it is believed only 30 percent of the English language can be lip-read, so it is not always very effective.

6. Deaf people do not necessarily use Braille.

Braille is intended for those who are blind. We do not necessarily use Braille unless we are blind, too.

7. Not all deaf parents have deaf children.

While my brother and I were born deaf/hard-of-hearing as a result of our father’s genetic hearing loss, this is not always true, and there is actually a special name for hearing children born to D/deaf parents. They are referred to as children of deaf adults (CODA). Often, they can be bilingual in both English and ASL.

8. D/deaf and hard-of-hearing people communicate in many different ways.

If the hearing loss is mild enough, the individual may just prefer spoken English. For those with little-to-no hearing, some may still communicate via spoken English with the assistance of high-powered hearing aids or cochlear implants. It seems to me that the majority prefer sign language, because it forms a special culture of people who share a language. The sense of community in the Deaf culture is very strong. ASL is a very pretty, visual language, and I like to encourage people to at least learn how to finger-spell.

meghan bayer
Meghan.

9. Cochlear implants are not a cure.

As a bilateral cochlear implant recipient for nearly six years, I can tell you that cochlear implants are not a cure as many may believe. They have their limitations, are capable of breaking or malfunctioning, and while some people like me can have amazing results from years of hearing practice, not everyone may be as lucky. When I take my implants off at night or to shower, I am just as profoundly deaf as I was before the implants.

10. The D/deaf don’t have to be “fixed.”

This is a controversial point that has divided the Deaf and hearing worlds for years. I made the decision at the age of 12 to receive my implants. My parents did not make the decision for me. Hearing aids and cochlear implants are just two of the many options available to D/deaf/hard-of-hearing people. I personally lip-read, sign and primarily use spoken English depending on who I am interacting with at any given moment.

11. “Never mind.”

A D/deaf or hard-of-hearing person may tell you that the most annoying thing they hear on a regular basis is “Never mind.” Some people may only be willing to repeat things a certain number of times before they finally give up. This can be extremely frustrating, because whatever the person was trying to say at the time was clearly of importance to them, but when you can’t hear the message, it’s as if suddenly it doesn’t matter.

Follow this journey on The CRPS Ninja Chronicles.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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