Evolution of a Cochlear Implant Attitude

With the influx of cochlear implant stories on DeafRead.com, I found myself smack in the middle of several pro and con arguments.

For me, personally, it’s a no-brainer. I don’t want one.

But as a parent, I’m in the incredibly ironic position of having to decide which way to go with a deaf child who fits in the category of “most likely to benefit from a cochlear implant.”

I do have my own ideals and I tend to stick to them. However, regardless of who I am and what I believe in, as a parent it’s my moral obligation to at least listen whenever someone utters the magic words, "This may benefit your child." And before I make a decision, I include my child in the decision-making process.

This was a hard article to write. It’s long. It’s going to piss off a lot of people on each side of the argument (there are people at both extremes who are incapable of respecting each others’ perspective).

Try not to get caught up in what I’m about to say. Don’t dwell on any particular sentence, paragraph, or anecdote. Instead, try to understand and appreciate the process, the evolution of an attitude. Then, and only then, will people have the opportunity to learn why each side feels the way it does.

Ultimately, for my late-deafened son who’s a prime candidate for a cochlear implant, I decided to…

Read on and find out.




Long Time Ago in a Galaxy Far, Far, Away...

In 1966 I’m a hearing baby with deaf parents. My parents sign all the time. But thanks to the prevalent oralist philosophy back then, most of my hearing relatives don’t really approve of ASL. They aren’t too concerned that I’m being exposed to it, though. After all, I’m hearing. They rest assured knowing that I’ll be talking just like them when I get older.

In 1968 my hearing relatives collectively pee in their pants when, shortly after a tonsillectomy, I effortlessly communicate with my deaf mother via ASL. My throat was too sore to talk but my hands were able to say a thousand words. The family grudgingly acknowledges that maybe there is some benefit to using ASL. Little did they know that this early exposure to ASL effectively wired my brain for language during the critical years between the ages of 0-5.

In 1972 the realization sinks in that I’m going deaf. Doctors and hearing relatives swarm in and forbid the use of ASL. Allegedly, ASL is something that will destroy my ability to speak, read lips, and acquire language. (If anyone had paid attention in 1968, they’d have realized I’d already acquired language. A lot.)

In 1984 I graduate from Germantown Friends School, arguably one of the best schools in Pennsylvania. Had I written a book titled I Made it in the Mainstream and Your Deaf Kid Can, Too I’d be a millionaire by now. But no, something was missing.

Close Encounters of the Absurd Kind

In 1988 there’s this protest going on at Gallaudet University. I’m in total awe of the fact that Deaf leaders actually have the power to change the world. I’d grown so accustomed to the sit up front, turn your hearing aid on, shut up and read your teacher’s lips mentality that at the time I couldn’t even lead anyone out of a phone booth.

In 1989 I enroll at Gallaudet. I’m overwhelmed by the total access and at the ease of communication amongst students and staff. ASL makes me realize that education can actually be fun and enjoyable. Friendships and close relationships with others are accessible on a level I’d never known before. It makes me wonder Why didn’t anyone ever tell me about this before? Like, say, back in the first grade?

In 1993 I have my first up-close encounter with the cochlear implant. I meet one guy who had a horrible experience in the hospital. Something went terribly wrong and he had to go right back into the operating room soon after his initial surgery. (To this day, he wants nothing to do with the cochlear implant.) I’m thinking Holy crap, this stuff is seriously messing people up. I view the cochlear implant as a cruel abomination. It’s inspired by money-hungry medical professionals preying on the vulnerability of hearing parents who don’t know enough about ASL and Deaf culture. I make a mental note that maybe, someday, I can do something to improve awareness of the Deaf world.

In 1994 I complete my work for a Masters Degree. I also get to work on Crossing Bridges, a book that will show the world why ASL and Deaf culture is The Answer for each and every deaf person.

Later in 1994, I test the material for Crossing Bridges by throwing tidbits into an Internet discussion board that was known as Deaf-L. I’m shocked to find that my opinions are shredded to pieces—by other deaf people. It hits me for the first time that there are deaf people out there who want nothing to do with Deaf culture. Just like you can’t force me to go AVT, you can’t force them to go ASL. To each his own. With this little taste of humble pie I pull the plug on Crossing Bridges and revise it to a more autobiographical format. The end result is a book called Deaf Again.

In 1997, the first edition of Deaf Again is published. In it, I trashed the cochlear implant. With vengeance. It feels great. Soon afterward I get to know this delightful woman who happens to have a cochlear implant. It’s one of the older models. She loves it so much that she would later go back under the knife to get an upgrade to a newer, behind-the-ear model. This is my first encounter with someone who actually likes having a cochlear implant.

Soon after publication of my book, I’m invited to be Keynote Speaker at a Family Learning Vacation for deaf/hard of hearing kids and their parents in Maine. It’s an overall success but two things throw me for a loop:

One: A group of hard of hearing kids, in a private group session, ‘fess up that they’ve tricked their hearing parents into thinking they’re “doing just fine.” They disclose tips and strategies that they utilize in order to give the impression they can hear. It amazes me how badly these kids want to earn their parents’ and teachers’ approval by pretending to be something they are not. (Hey, look at the pot calling the kettle black—I used to do the same thing.)

Two: During a follow-up session with the parents, it hits me how sensitive a topic this can be. A simple closing exercise results in a number of parents breaking down in tears. All I did was ask them to share positive traits and abilities their kids have. More specifically, traits and abilities that have nothing to do with deafness or the ears. All I wanted was for them to stop looking at the disability and start looking at the ability. Even though I made my point, the emotional reaction catches me off guard. I make a mental note to be prepared for this in the future.

Paradigm Shift

In 1998, I’m at the NAD conference in San Antonio when Phil Aiello and Mary Pat Graham Kelly share their cochlear implant experiences with a predominantly Deaf audience. There’s a Jerry Springer tension in the air but Aiello and Kelly wind up doing a great job. Aiello wins me over with his description of previously unknown sounds emanating from the mens’ room. Among his comments that stick with me to this day are “Hey, I’m still me” and “The deaf community must welcome people who have the cochlear implant. If you don’t, you will get weaker.” Aiello’s words inspire me to write an article titled Cochlear Controversy. In the article I repeat Aiello’s request that the deaf community be more accepting of those with the cochlear implant.

Soon after Cochlear Controversy I start getting some really weird mail. There’s more coverage of cochlear implant miracle stories in the media and apparently my hearing relatives are gobbling it all up. They cut out clippings of these success stories and send them to me at every opportunity. I know they mean well, but the underlying message is clear: It doesn’t matter how much I accomplish in life. To them, I’m the broken-eared guy who needs to be fixed. Always was, always will be. I’m eternally grateful for my strong circle of Deaf friends who “get it” and know me on a level that few (if any) people in my own family ever will. I vent my frustration in a follow-up article titled The Impossible Ideal.

In 2000 a revised edition of Deaf Again is published. Due to my increasing encounters with deaf people who have a cochlear implant and insist it isn’t the evil horror that we make it out to be, I decide to tone down my language. I tactfully explain why I don’t want one but acknowledge any deaf person’s right to get implanted if they wish. I remain leery about the cochlear implant for babies and young children due to the traumatic nature of the surgery. (Yes, I know that the younger you get it, the better—the same argument for early acquisition of language through ASL can also be applied to getting a cochlear implant. The critical window of opportunity for language remains the same regardless of whether you choose ASL or a cochlear implant. It’s just that ASL seems a hell of a lot less painful. Just my honest opinion.)

In 2004 my second book, Anything But Silent, is published. Not only does it include the aforementioned Cochlear Controversy and Impossible Ideal articles, but also a classic titled You Deaf People. Based on the emotional Family Learning Vacation in Maine, You Deaf People is about a parent’s angry reaction to the deaf community’s reluctance to embrace the cochlear implant. The only reason I’m aware of this parent’s anger is because I’d asked a discussion group to write down their questions anonymously during a break. Up until that point they were too nice, too reluctant to rock the boat. Believe me, anonymity helped us bring the real powerful issues to the forefront. We addressed all of the questions and it was a phenomenal success. But the term you deaf people sticks with me long after the presentation. It makes me realize that the gap between hearing parents and the deaf community is a lot wider than it should be. We need to do a better job of reaching out and connecting with each other.

In 2006, Dr. Jerel Barnhart graciously agrees to let me reprint his groundbreaking article titled The Window of Opportunity in the book On the Fence: The Hidden World of the Hard of Hearing. Dr. Barnhart, as a deaf man with a cochlear implant, smashes the either/or mindset by advocating on behalf of ASL. As he explains it, we need to be aware of how much as child can hear versus how much a child understands. This is why Dr. Barnhart strongly recommends the use of sign language for all children, including those with cochlear implants, in order “to provide the best opportunity for a child to learn language at an early age.” It’s nice to see someone making the best of two different approaches. On too many occasions I’ve seen one side totally brush the other under the rug.

Now it's Getting Personal

Later in 2006, my oldest son Darren starts going deaf. It doesn’t really seem to bother him. He has deaf role models of all ages surrounding him at home and in the deaf community. Ironically, one of his best friends at school has a cochlear implant. They’d become quick pals before anyone knew Darren was losing his hearing. Amazing how they connected before any adults figured this out. Inwardly, I cringe at all of the anti-CI material I’ve written over the years because the last thing I want to do is burn any bridges between Darren and the only kid in his school who really “gets” him.

In 2007 there’s a unique learning experience for Darren. We go to Alexandria, VA, to support the Deaf Bilingual Coalition’s first demonstration at an AG Bell convention. The demonstration is peaceful. The convention is puzzling. It seems to be full of hearing women wearing Talk for a Lifetime badges. I can’t help but think of some women I know who repeatedly set themselves up for failure by dating problem men. You know, the women with the Sure, he’s a pig now, but I can CHANGE him mentality. I can’t help but wonder if a similar phenomenon is occuring here. (Sure, he may be deaf now, but I can...) This might be the most sexist thing I’ve ever written but I’m only reporting what I observed. A large gathering of hearing women on a mission to help deaf children. You can define “help” at your own discretion.

Seeing an opportunity to kill two birds with one stone at the AG Bell convention, I take Darren upstairs to an exhibit where all of the books and promotions are focused on AVT approaches. I want Darren to see the assistive technology material so that he doesn’t feel bad about being the only kid in his school wearing hearing aids. Less than two minutes later, a security guard rudely—and I mean RUDELY—boots us out. Darren and his younger brother Brandon freak out. But in a matter of minutes, a lot of DeafRead bloggers send in words of support that mean the world to Darren. He—and I—are genuinely touched that the Deaf world has our back. Darren winds up writing an article that moves several people to tears. More words of support, in person and via email, pour in.

Later at an IEP meeting one of the reps from the school district suggests we look into a cochlear implant for Darren before we go ahead and get him an ASL interpreter. We say “no thanks” and get the ball rolling for the interpreter. He gets one a few weeks later. It makes a world of difference.

My wife and I are feeling good about our decision but we want to include Darren in the process. We tell him what happened at the IEP and we ask if he agrees or disagrees. I add that some people feel he would be less frustrated in class if he had a cochlear implant. Darren responds by saying his friend with the cochlear implant gets frustrated. His friend also told him about the surgery. “I don’t want them cutting my head open,” Darren adds.

We’re still feeling good about our decision when a friend of ours who has a cochlear implant reports that she can “understand 97 percent” of what her hearing mother says. This woman is late-deafened and her experience validates the assertion that Darren may be in the category of kids most likely to experience a high level of success with the implant, since he only recently went deaf. We acknowledge this but also are aware that there are other genetic factors within my family which may be worsened by the procedure. This conversation alone makes us feel like we’re doing something we shouldn’t: playing god. Still, I don’t want Darren to be left out of the process. It’s his life and we support him as best as we can. I tell him that he may actually do better than most people with the cochlear implant since he only recently lost his hearing. “If the cochlear implant could help you go back to who you were two years ago, would you want it?” I ask. Darren doesn’t even stop to think about it. He looks me square in the eye and says “Nope. I’m deaf.” I’m proud of this kid. He has a better sense of Deaf identity at age 8 than I did at age 20.

Finally it appears we're headed for some closure with this whole mess. But then some idiot points out that maybe Darren’s making all of these pro-Deaf decisions because he worships the ground his dad walks on. Awww, crap. I love being a role model but I don’t want anyone copying me based on my ideals. I’d much rather my kids discover who they are and build on that instead of feeling they have to be Drolz Clones.

I check with Darren one more time just to be sure. Same answer. “Nope, I’m deaf.” I know he’s terrified of the surgery (I don’t blame him—so am I) so I tell him about a newer procedure on the horizon, the one that takes about an hour and has a lot less blood and gore. Same response: “Nope. I’m deaf.” I’m satisfied.

What Are We Supposed To Do, Flip a Coin?

In 2008 DeafRead suddenly has a large influx of pro-CI blogs. Agreements and disagreements abound. The success stories and the horror stories are an emotional roller coaster. One guy—who hates his cochlear implant and no longer uses it—talks about his ear popping in and out of place after his surgery. I check with one of my friends whose husband has a cochlear implant and she confirms that yes, he has the same problem. She remarks that the surgery was very traumatic although in the long run her husband is glad he did it. I’m grateful for the honest feedback.

The pro and con arguments continue. I have a better appreciation for what hearing parents go through when they decide whether or not to implant their children. I’m particularly fond of Jodi Cutler del Dottore who shows a desire and ability to understand the Deaf perspective. She proves to me that it’s possible to be pro-CI and yet not be an audist. (Believe me, I know an audist when I see one. Jodi’s not an audist. That security guard at the Marriott, on the other hand: Flaming Audist.)

This is driving me nuts. It’s hard for me because as much as I love being Deaf, I’m watching my own kid lose his hearing identity. Loss is always painful. (In an article titled Hearing Loss, I explained the difference between being born deaf and going deaf at a later age. It’s a huge difference.)

At the same time, fortunately, Darren’s circle of CODA and deaf friends is growing. I guess you could say it’s like watching a part of him die and a part of him being reborn. I don’t care what anyone says, it’s a difficult process. If Darren were born deaf, it would be the easiest decision: No cochlear implant. But to watch him slowly morphing into a different person, I’d be lying if I said I didn’t second-guess myself. Change is hard. Before a butterfly can emerge, it must struggle to break out of its cocoon. Although the struggle has a purpose—it strengthens the butterfly—no parent likes watching their kid struggle. I’d like to believe my wife and I have enough common sense to know when to allow a child to struggle and when to offer support. It’s a fine line we walk.

For those of you who are wondering how the hell I could even consider a cochlear implant for my child, being the culturally Deaf person I am, let me tell you this: I used to be hearing. I can remember talking on the phone, listening to music, and doing other auditory-based activities. Do I miss it? No. I have no desire to go back. I love where I am today and I have no regrets. I love the Deaf world. But I made a choice. I chose the Deaf world. I want my kids to have the ability to choose, too. Which is why I made sure to tell Darren of all the options out there. I value his right to choose.

Darren's choice is to be Deaf. I completely understand and respect it. I'd say this seals the deal 99%. The remaining 1% is my parental duty to second-guess myself incessantly. So, as a parent, am I doing the right thing?

Finally, I can’t stand it anymore. I need an answer, and I need it now.

Suddenly, my mind drifts back to that parent discussion group in 1997. Yes, the one where I had them crying in the aisles. The $100,000 question that day:

What positive qualities does your child possess? Forget about the ears for a moment. Forget about the disability and tell me about the ability.

I make a mental list of all the good things Darren has going for him. It’s a long list.

That’s it. He’s not getting a cochlear implant.

There. We’re all done with this. I’ve reaffirmed my faith in the Deaf world. Yet at the same time, I have the utmost respect for hearing parents who wrestle with what to do in similar situations. Regardless of what they decide to do (or not do), Phil Aiello is right: we must welcome them.

I’m glad this is done with.

And then…

“Uh, dad…” Darren said. His younger brother had just left the room. Darren pointed at the TV and clicked on the remote. The volume was at 46.

“I think Brandon’s going deaf.”




What Other Visitors Have Said

Click below to see contributions from other visitors to this page...

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In my opinion cochlear implants are a good thing, I think they help deaf people be able to communicate in a hearing world. Maybe some people don't want …

good thing! 
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my opinion 
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what i think about cochlear implants 
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Cochlear Implant 
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cochlear 
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cochlear implant  
i am an asl hearing student, my view on the implant is that it is a good idea for someone to get a cochlear because it will give the Deaf person a chance …

ASL student hearing. 
If the kid was born hearing and became deaf. i would suggest giving him the Cochlear Implant, but sense your kid is old enough to give his opinion on what …

Implant 
I'm hearing and although I agree with both sides of the controversy, I think that it is okay for an implant as long as you connect sign language with English. …

My Opinion  
I am a ASL student and lately in class we have been learning about Cochlear Implants. We have done research on it and what Deaf and Hearing people think …

My opinion  
I'm a student studying ASL in high school. I found the article to be quite interesting watching your view point on the cochlear implant change from 100% …

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I feel that the Cochlear implant is a great thing. I feel that it could give a child so many opportunities in life. I feel that it gives them the best …

Cochlear Implant 
I am a high school student learning ASL, i love it. I read your story and i found it weird how so many deaf people don't want anything to do with deaf …

Cochlear or silence 
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Con 
I don't think that children should get CI's, because it should be their choice. I think that if the parents are hearing, they should adapt and learn ASL. …

The Cochlear Implants.  
I personally think that it's between you and your child's decision whether or not to get the implant. I think that you made a great decision and going …

Cochlear Implant  
I honestly think that if i was in his position would have done the same thing. I want my child to have say on weather on not he would want a cochlear …

Cochlear Implant Opinion 
I believe that the CI is a good option for your child, being a hearing person I could see how it would be a tough decision and a hard choice. I completely …

My opinion  
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will my family ever understand my child is not broken..... 
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I'm hearing and although I agree with both sides of the controversy, I think that it is okay for an implant as long as you connect sign language with English. …

My Opinion 
I'm a student studying ASL in high school. I found the article to be quite interesting watching your view point on the cochlear implant change from 100% …

Hearing 
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does not make a difference 
once i read this article it made me start to think. if i was to have a child go deaf i would love to know what he or she wanted. i respect peoples decisions. …

Best of Both Worlds? 
I enjoyed reading your article and I agree with many of the points you presented about cochlear implants as well as the deaf community. For example, I …

Comment 
Personally I think that everyone is different, and that there are always different circumstances for each individual person. It really depends on what …

A mix of things 
im really not sure one witch side im on its a mix of things. i personaly think that a child should be included in the discution of there cochlear implant …

my comment  
It was really nice to read your article about Cochlear Implants. I've always thought that when/if I ever have kids I would just give them an implant but …

Anonymous 
I am a hearing person and have been studying ASL for only a year. But I believe that the decision to get a cochlear implant is solely based on personal …

Eye-opening 
I am studying this topic in my ASL class and this was really eye-opening. I am not necessarily pro-CI, but I can understand why some people might want …

High school student 
i don't know how old Darren's little brother is but if hes around the same age as Darren was when he lost his hearing let him make the decision on to get …

Cochlear implants yes or no ?  
This implant has its ups and downs. There is many of things that people do and don't like about the implant! I personally think it is a good idea it will …

Adam K. 
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fudgepickle 
I think that a deaf person should be proud of them self. You have your own language you should be proud. You will be deaf even if you have a cochlear implant. …

cochlear implant 
I think that cochlear implants are a good thing to have. Because they can help someone hear for the first time. Or help someone hear again. Overall I think …

HoneyBadger101 
Personally I think that you should only get a cochlear Implant if you were hearing at one point -- don't get me wrong, it is a COMPLETE CHOICE dependent …

qwaaba 
I believe in cochlear implants. I am hearing and am also the son of a hard of hearing mother. She does not have the cochlear implants but hearing aids. …

cochlear implant 
I feel that the cochlear implant is a good thing. Because it can help people hear for the first time, help someone have the ability to hear again. So overall …

My opinion  
I'm an exchange student from Thailand.I have been living here for 7 months. First,I came here,everything is so tough especially language. I grew up speak …

Choice 
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Last Resort 
The Cochlear Implant:so versatile and double-sided,so permanent. The way I see it, the decision of getting implanted ends all chances of original hearing. …

cochlear implants 
I think that this was a very helpful, honest way to deliver the side of each of the argument.It leaned to the non-cochlear implant side of the argument, …

anti implant 
I believe that parents of a child that is born Deaf doess not have the choice to choose for their son or daughter at a young age if they should recieve …

The Two Kids and Cochlear Implants 
I feel that the guy that realizes he is going deaf and decides to go around ask how people feel about cochlear implants was a pretty good decision. He …

Cochlear Implants 
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A Hearing Person's Opinion 
I am a student learning American Sign Language. This is my first year learning ASL but i already know a number of signs. Recently we've been disusing …

Opinions 
I think that deaf people should have the choice to make their own decisions without anyone else's input. It is not their choice, some of the people who …

ASL student perspective 
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Yes or No? 
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The Child of a Deaf Adult with a Cochlear Implant 
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My daughter lost her hearing too. 
My daughter was born hearing. Due to a medical mistake she began losing her hearing at around 15 months. At 18 months she had a moderate loss and was fitted …

Grandmother of deaf bilaterally implanted deaf child, Mother of her deaf father 
Up until this ridiculous custody battle where the family court judge has ordered that my deaf son's deaf daughter MUST keep her CIs on ALL the time, I …

hearing womans opinion 
Wow its interesting to read the controversy about the ci implants. I posted this on deaf.coms website. its just my opinion.. Hello, Im a 25 year old …

Deaf Parent of a Implanted Child 
I am a Deaf parent of a Deaf child with a CI. He uses both ASL and spoken English and is part of both Deaf community and hearing community. He is not fixed …

Hearing Person...trying to understand Deaf perspective 
Dear Mr. Drolz, I am currently studying ASL, and plan to attend Gallaudet's Speech Pathology program with an emphasis in Deaf Studies. I just finished …

looking for pro and con 
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I see both sides and it's a personal choice 
I am 31 years old and I have been profoundly deaf for almost 5 years now. I can see both sides of this debate. First and formost I must say that it is …

Mother of a Son (Part 1) 
I appreciate your story. As the mother of a child who is deaf I "totally get" the feelings and emotions of doing what is best for your child. Your decision, …

Mother of a Son (Part 2) 
My husband and I continue to try and grasp ASL on our own since the class ended and let me tell you, it is very HARD to learn a 2nd language when you're …

Mother of a Son (Part 3) 
That's it. Research studies have proven over and over again the language window. The best window of language acquisition, any language, is from birth …

Adopting Deaf Child 
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pro CI 
I would love to read your article Hearing Loss. I do agree going deaf as an adult is different than being born deaf. I am an adult CI and losing my hearing …

How to support you and Darren.... 
Darren CAN change his mind later on :) There's no time line when he SHOULD have a CI so it doesn't have to be "now" :) Technology is always improving …

Taking you seriously for the first time 
Wow, Mark! I've lurked on your blogs before but you've never said anything that gave me pause, until now. Sorry to be so blunt -- no offense intended, …

This had me absolutely glued. 
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Thank you for your insightful experience 
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Implant Sounds Artificial and It IS 
I took a class last semester at California State University of Northridge (Teaching Audiology and Speech for Teachers of the Deaf and Hard of Hearing - …

The cochlear implant struggle 
Well Mark, it looks like you and I are living cloned lives. Four years ago, I began investigating the cochlear implant because I felt I needed to go over …

Whatever Works 
I don't really have a story, other than, I think that decision is everyone's own to decide. In case of a baby or a child, I can only hope that the parents …

Comment 
Sigh. My son is just like your son... born normal hearing, losing hearing as he gets older and he is now deaf (averaging 100 dB in both ears.) He clings …



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