Elijah and his CI journey

My Bio: My husband and I met working at a mental health group home for the deaf and hard of hearing. We are considered CODAs (Child of Deaf Adult) in the deaf world which meant that we are hearing children raised by deaf parents and fluent in sign language. Fast forward 6 years to the day our son Elijah was introduced to the world. We expected him to pass his newborn hearing screening just like all of our nieces, nephews and older sister before him... but he didn't pass. We were stunned and heartbroken, yes heartbroken. You would think that this news wouldn't be so bad for a couple who were raised by deaf parents but it wasn't that simple. We have first hand seen the struggles our parents faced with in unemployment, communication barriers and the fight for education standards among the deaf children. Don't get me wrong...I take pride in my parents and my unusual upbringing. The thought of my son facing those barriers was too much for my heart to bare. We initially ruled out cochlear implants as an option because we grew up thinking that it didn't work very well and the sound quality was sub par. Not to mention, we were also well aware of the strong opposition to cochlear implants, especially on children. It didn't take long for us to learn that there was a lot of misconceptions about cochlear implants within the deaf community. We ultimately made the decision to pursue cochlear implants after doing endless hours of research and talking to other families. We announced announced to our family and friends that we would be exploring cochlear implants for our infant son. That sparked a lot of anger within our family. Half of our family members did not speak to us for about 6 months. Two of my husbands siblings have deaf spouses and our news caused a firestorm on his side of the family. My son was implanted at 9 months old and activated at 10 months old. Our family members ended up working through their differences with us after my son received his surgery. They chose to put aside their difference for the sake of Elijahs happiness. I think Elijah has definitely changed a lot of lives with his journey.

Elijah is 2 1/2 now and he is doing amazing with his implants. He's has a fairly large vocabulary in spoken English and ASL. I still get anxious when deaf strangers see us out in public with our son. There are a lot of neutral/supportive Deaf folks out there but not very many are forthcoming about their support. My parents seem to be skeptical (but are supportive) about how well it works. They cannot hear him speak and so they tend to assume he's unable to hear speech.

One interesting piece worth mentioning is that my sons hearing aid video went viral a couple years ago. That's a whole other can of worms we opened in the deaf community.


Comments: 2443 • Responses: 28  • Date: 

keevesnchives3003 karma

There was an episode of House MD, where one of the patients was deaf and it alluded to conflicts about whether being deaf was a disability or something that made the patient unique. Have you seen it?

Also, just a fun story, an acquaintance once told me that he had a nephew with a cochlear implant, and he would just take it out whenever his parents or teachers would yell at him. I found that to be interesting.

ahavahlove2015 karma

I have not seen that episode. Now I want to watch it, lol. My son tends to pull them off when he wants to play on the swing set or whenever he's in the basement. He seems to think he needs to play without his "ears" on. He has started to get defensive when we try to adjust them on his head. He's tells us "no touch, leave it on". I

pburydoughgirl1395 karma

Taking out your ears to go play in the basement sounds like the start of a horror movie.

ahavahlove782 karma

It's basically a horror story when you can't immediately find them.

Throwaway_comment100220 karma

Having metal ripping the coils off your head can be incredibly frustrating sometimes. Our fridge is right next to the door, with very little space between the door and side of fridge. Only got my implants in Nov 2016 but it did take me a while to develop a kind of manouver to avoid getting too close to the fridge, otherwise my left processor would attach itself to the fridge due to the magnetic pull. I don't really use umbrellas now for the same reason.

Static is usually advised as best to avoid static. Even so, the times I've come across static (touching my computer when it's just been plugged in for example l) tends to feel slightly strange compared to before I was implanted. It doesn't mess with the implants at all (so far), but sometimes my hands feel strange.

Those are just a couple of my experiences, but maybe they can shed some light on why your son may want to have his ears off in some situations.

ahavahlove74 karma

You must have really strong magnets. We keep my sons really light so that it doesn't cause pressure points.

meubem49 karma

Candlejack took ya?

ahavahlove43 karma

I'm not really sure what that means, lol.

BlackAndBipolar65 karma

Its an old meme, usually when you mention candlejack he stops you from being able to finish your sente

ahavahlove30 karma

Oh, lol. I should have edited that.

meubem51 karma

You abruptly stopped a sentence at "I", seemed like you didn't finish your thought. People would do that a lot ages ago on the internet, a callback to an old cartoon called Freakazoid.

ahavahlove22 karma

I have never heard of that saying. I've learned something new.

FuriouFive987 karma

Is there a specific reasoning behind other deaf people's reticence to embrace the implants or is it just a 'there is nothing wrong with me to fix' type of thinking?

Have any of the people who were initially against the implant more interested now that they have more first hand experiance on how it works and how much of an impact it can have on one's life?

Last question: How hard it it to update the implant when technology advances? Does it require another surgery or can parts be retrofit to the existing system?

ahavahlove1312 karma

It's a bit of "we don't need to be fixed". It's also that they fear that technology will wipe out the future need for ASL.

My BIL is still against CIs but once we made amends he actually considered hearing aids. He's not a candidate for either though. My MIL ended up getting a hearing aid after not wearing one for 20 years. She did it for my son, which I love.

The internal piece is meant to last decades but if it fails then it would need to be replaced. The external piece( processor) is replaced about every 5 years. He would get the latest version.

xXConfuocoXx1237 karma

How silly is that argument.

Preserve a disability to save a language.

ahavahlove1203 karma

Cochlear implants isn't exactly a cakewalk but it will open a lot of doors for our child. I will say that ASL is a beautiful language. It's an extremely social language and they take a lot of pride in their culture. I personally think their aggressive behavior is actually pushing parents away from wanting to teach their CI children ASL.

goatonastik699 karma

We had two clients come into my work just a month or two ago, who were both deaf, who discussed how their son was recently born deaf, and that they were strongly against him getting implants. Doesn't it seem selfish to assume your child would never want to have the ability to hear?

ahavahlove134 karma

I think if you raise them right they won't feel like they are missing out. I know a lot of deaf families who chose ASL only. I only wish them the best of luck.

sharkbait76325 karma

I know that the implants really need to be implanted at a very young age otherwise your ability to learn spoken language is diminished, which is a huge reason many parents get the implants at such a young age. Would you be opposed to him deciding that he doesn't want to use the implants in the future?

ahavahlove387 karma

I wouldn't oppose it if he was old enough to understand what was is at stake. I honestly want him to be happy. He's doing really well with his CIs but if he wasn't doing as well then we would likely have him uses his CIs for environmental awareness. You hit the nail on the head with the importance of implanting early.

sharkbait7694 karma

Are you planning to teach him ASL? I took some ASL in high school, so I'm aware of many of the issues with them and the heated feelings that surround them. It often seemed as though loosing the deaf community and ASL were huge roadblocks to implant acceptance.

ahavahlove247 karma

Yes he is learning ASL. We have a lot of family members who rely on ASL. I know a lot of parents who let their CI children drop the ASL component. A lot of the children lose interest or the parents want to prevent them from being exposed to the anti cochlear toxic. I don't blame them. I really wish I could advocate more but I just don't want to align myself with the activists.

Feed_Me_No_Lies304 karma

I say this as a gay man: You've done the right thing and don't doubt it for a second.

I am happily married to a man and we have an adopted son so one can say I am definitely comfortable as a gay person. I am also well aware of the philosophical, parallel arguments between something like engineering homosexuality out of a fetus in untero and cochlear implants killing out the deaf community.

The truth is, if I had the choice, I hope my son would be straight. Not because I'm against gay people obviously, but it is a matter of challenges within the world. My teen life (and young adulthood) was miserable as a gay person. People can say "Oh, it is the fault of society and not homosexuality itself" and while that is very true, the fact remains that being such a minority was a disadvantage in many ways.

Now let's talk about deafness.

The challenges and handicaps to one's daily life that a deaf person faces are so much more severe than anything I've gone through. Sure Deaf culture has formed. Sure, it is vibrant and unique and worth something.

But at what cost? I cannot imagine for a second denying my child something so basic to survival as the ability to hear. I want to slap the shit out of the deaf community for being so against this.

I get it...I get it: "There is nothing wrong with us! There is nothing to fix!" As a gay person I've said the same thing but goddammed if I didn't wish I was straight as a teenager so that I can find a wife and have children. While I would grimace at the idea of someone "turning their kid straight" in the womb, I'd understand them wanting to. I'd get it.

I don't think the similarities between homosexuality and deafness are identical, but there are definitely parallels and I do believe it gives me some insight into this. I also believe we can accurately label deafness as a disability much more readily than we could homosexuality in today's climate, and I understand the definitions of the word disability change over time.

Anyway, have you read "Far From the Tree" by Andrew Solomon? It is his Pulitzer Prize winning book about parents raising children very different from themselves. There are chapters on dwarfism, autism etc and there is also one on deafness. I highly suggest checking it out if you haven't already.

EDIT: Link to the book [https://www.amazon.com/Far-Tree-Parents-Children-Identity-ebook/dp/B007EDOLJ2]

ahavahlove47 karma

Aww, I really appreciate your perspective. I'll have to check out that book. I think deaf individuals will try to equate CIs to gay conversion therapy which is an interesting theory. I know that gay conversion therapy doesn't work well and is actually quite harmful. My husband is a mental heath therapist and disagrees with trying to change a persons identity. I don't believe my son was born with a deaf identity and the tools I give him him are certainly not a cure by any means.

Crookshanksmum288 karma

What is your plan for school? School for the Deaf? Mainstreaming? Something else?

I was born deaf. My parents learned to sign, although they mostly wanted me to be oral. I spoke and heard with my hearing aids while being mainstreamed. As an adult, I threw out my hearing aids and stopped talking. A lot of people were like "But your parents spent hours teaching you to talk and hear! You're just going to throw that out!?" I'm grateful for what they did for me, but I'm mostly grateful that they gave me a choice. That choice is worth so much more than if they only gave me sign or only gave me speaking and listening skills. I think you're doing the right thing for your son.

ahavahlove323 karma

He is starting a DHH preschool in a week. They do a lot of oral components but they also teach ASL. We plan on mainstream unless he is demonstrating a visual need. I think having oral skills is invaluable to finding a job. I used to work as an employment specialist for the deaf and it was extremely hard to find employment for the ASL only folks. It was really heartbreaking to see. My clients that were able to lipread or speak some were so easy to find jobs for. This was partially the reason we decided CIs. Thank you for being so kind.

TLady259 karma

This is so interesting. I have a baby with dwarfism, and the discussion about limb lengthening has also shown to be very controversial within the community. Apparently the surgery has come a very long way and they can do amazing things, but many in the little people community are very against it for the same reasons it sounds like many in the deaf community are against implants. My husband and I are certainly open to exploring limb lengthening for our child, and my only holdback is whether we do it while our child is young and get it out of the way (they can start as young as eight years old from what I understand), or wait until she can give her own informed consent as an adult. Is there any discussion of this issue in the deaf community surrounding implants? Thanks for sharing! Sometimes we have to do what we know is right for our children even if others don't understand.

ahavahlove80 karma

Definitely get your child's input at that age. It's the same for microtia (born without an ear). Ear reconstruction is discouraged by older generations.

Deafacid196 karma

As being deaf myself, Is there a chance that if i had kids in the future, they can be deaf due to passing down same genes?

I was born deaf and got a cochlear implant when i was two and currently in college. From my understanding, it was a genetic fuck up that made me deaf as no other family or relatives are born deaf. It was interesting to hear your side of having a deaf family and they being opposed to the CI's while i am the only one.

ahavahlove140 karma

It depends on the gene. Recessive gene would mean that your partner would need the same gene to create a deaf child. For dominate it only takes 1 parent to pass the gene.

gangler52119 karma

Saw a post on tumblr the other day about this old woman. She hadn't spoken to anybody in thirty years because nobody in her life knew sign language. She was so thrilled to finally be able to chat up a variety store clerk.

Do you worry that one day your son might not have access to a deaf community?

ahavahlove187 karma

No.. his generation will be much more accepting than my generation. I think he will do fine with peers. I do fear him being exposed the negativity of the older generations.

Booblicle50 karma

Ive tryed to study a little ASL because my hearing is just going to continue to degrade. And with it all the cultural stuff you learn along with it. Much of the deaf dont really see it as an impairment, at least within their own communities. It probably stems from problems associated with being around the hearing.

That 'negative vibe' within the hearing isn't going to go away. I deal with it often enough. " shun, because I'm being shunned" not sure if it's defeatism or what. But it's fustrating on both sides of comunication.

It really is so much damn better to be able to partake in conversations. They may not agree with your decision, but your kid will be happy. And will be accepted by both the hearing and nonhearing (assuming he continues learning ASL)

ahavahlove29 karma

Thank you, we wanted to give him the best of both worlds.

jacluley24 karma

I think the internet/social media/tv have exposed this new generation and the last generation to many more minority groups than ever before. So many of the past generations hid people away when they were slightly different. It is fascinatingly disturbing.

Only semi-related, but I listened to a podcast by Radiolab about blind people and how they get isolated because people want to do everything for them instead of letting them fail and learn. It was mostly about echolocation, which is used by a very very minuscule section of the blind community, but it was interesting at least to hear their theories of why the blind community is so unemployed and isolated.

ahavahlove41 karma

The difference with the deaf community is that they have a very strong and thriving community with their own language. Interestingly the Deaf community only accounts for 1-2% of the hearing loss population.

coryrenton113 karma

Is this community attitude regional, or is it generally accepted among deaf people worldwide? Have you considered moving to an area where this is not an issue among the deaf community there (if there are such places)?

ahavahlove189 karma

From what I know it's pretty common in countries that have access to cochlear implants. I know for sure that deaf communities in the Europe, Australia and even Mexico are pretty against it. Its the communities that rely solely on sign language.

Edit to answer the last question: The deaf community is spread out all across the country. They do a lot of FaceTime these days. Back in the day, you either traveled to see them or used the TTY to communicate. I ended up leaving my job that worked with Deaf coworkers a few months before my sons surgery. That's how I took myself out of the deaf community.

coryrenton35 karma

What other taboos are there in the community that you don't agree with, or outsiders might find strange?

ahavahlove99 karma

It's mostly the way they try to dictate how parents raise their kids. It's usually the vocal activists who try to interject. One taboo I've noticed is that you leave your hearing aids at home when you're at deaf events. Hearing aids have a love/hate relationship in the deaf community. A lot of them think it's not for kids.

coryrenton21 karma

are there any major threads of disagreement with regards to teaching sign languages other than ASL, or neutral words with offensive signs that people disagree about whether to change?

ahavahlove121 karma

Deaf folks tend to use Facebook. They like to use the term Audism or Audists to describe a person who thinks being deaf is a bad thing. Technically I would be considered an Audists because I implanted my child. I hate that word.

The sign "cochlear implant" is used with a bent "v" to the head which implies a level of hostility. To give you an idea... A bent "v" to the neck means Vampire. There is discussion that it's more appropriate to sign it with a "u" to the head. The letters refer to the signed alphabet.

greevous0063 karma

Heh. I've been a hearing signer for over a decade, and I never made the connection until you just said that. Wow. So culturally Deaf people are vaguely hinting "vampire" when they sign that someone has a cochlear implant... completely missed that.

ahavahlove23 karma

That's what I've seen on FB. A lot of the neutral Deaf want to change it. My mother in law told me about it changing the sign.

Fheggett97 karma

As a deaf teenager starting university next year, I'm really glad you decided to have your son implanted with CI at very young age because you'll faster at young age right? I was born deaf and received CI at the age of 2 3/4 on the left side. Stuck with hearing on the left side only until last year where I got my second CI on my right side.

I started speaking with my own voice. I learnt Australian sign language (Auslan) a bit but kinda gave up because I was waaaaay too used to speaking because I'm always surrounded with hearing people. Sometimes I regret not knowing or understand Auslan. Also, I didn't really take part of deaf community because I feel like I just simply don't belong in there. I'm sure your son absolutely wouldnt have problem with that.

Make sure you take your son to a school that have benefits for child with disabilities. They are really helpful, respectful and great guidance for the future. Without that, I wouldnt be a top student in every class. The nice thing that one of my teacher said was that she never ever would call 'deaf' a disability. It warmed my heart.

The important thing for your son to learn is that DON'T LET THE DEAFNESS STOP YOU.

Best of luck for the future!

ahavahlove9 karma

Thank you for that advice. I don't get to meet a lot of young adults who were implanted young. Have you considered working with Cochlear to be a resource for parents? I'm assuming you have Cochlear since you live in Australia.

TwentyTwoTwelve37 karma

Have you ever met anyone from the Capital D deaf community? They're something of a myth to me as I've heard of them but never met any.

According to what I've heard, they socialise only with other deaf people, and shun people who can hear and discourage those who seek to improve or in some way gain or regain hearing, to the point of ostracising them if they go through with it.

There is a deaf community where I'm from but it's rare that I come across any deaf people so I've yet to have the opportunity to discuss it with someone who may be more informed.

ahavahlove28 karma

Yes, I have met people like that. They tend to push the extreme side. That's why a lot of other deaf folks don't speak up or outwardly support other people with CIs. It's unfortunate.

smackem_yackem32 karma

Have you considered genetic testing, such as connexin 26, for your family?

ahavahlove80 karma

He was tested positive for connexin 26. I think he might have Waardenburg Syndrome as well. My husband has hearing loss in one ear which makes my son the 5th generation affected. The only reason I suspect WS is because unilateral hearing loss is common in WS and it can cause 2 different eye colors which my MIL has and I believe a great grandfather also had. WS is dominate. My moms side is hereditary, she has a deaf sister and a deaf great aunt. Her gene is recessive so likely the connexin 26.

smackem_yackem18 karma

Does your husband have 2 different colored eyes? If it's dominant, then you'd think he should also express this phenotype.

ahavahlove45 karma

I've done a lot of reading on it. You can get one or all of the traits. There are 4 different types too. I don't think the wide set eyes or white forelock is prevalent in their type. The type i think he has is more common with hearing loss (bilateral/unilateral), 2 diff color eyes. I failed to mention his parents have 5 kids and 4 of them were born with unilateral hearing loss.

smackem_yackem20 karma

Ah, interesting. Generally when a family carries a gene that has multiple traits associated with it, they all express similar traits because they presumably all inherit the same mutation or the same size deletion/duplication of the gene... But this isn't always the case. Due to other things like genetic recombination you can see variations.

ahavahlove31 karma

Yeah.. it's a suspicion I have. He didn't get tested for WS. He tested positive for C26 and they stopped searching for other deaf genes. I was really upset that they didn't search for more deaf genes. Genetic unilateral hearing loss is only found in WS. I assumed that the deaf gene was dying out because him an his siblings had the one sided hearingloss.

desmaraisp31 karma

Hi u/ahavahlove,

I just read through your AMA about your son's CI and it interested me a lot as I also wear CIs, although they are much older. However, I am sure wether or not you will answer my comment as it's been ten hours already since you started your AMA. I guess I'll post it and cross my fingers.

First of all, I am quite surprised by how similar the deaf people's community's reaction you encountered to what my parents encountered, even if I would say it was not as extreme. t ranged from disappointment to mild disapproval and hostility. I guess not having other actually deaf people in my family helped ease the decision.

I also wanted to say I consider your son has something I could say I am jealous of. He has closely related deaf people. With the years, I have lost more and more contact with my local community, so even if I learned LSQ (Quebec signed language) when I was a kid, I lack practice and am not fluent anymore. I have forgotten a lot of signs over the last decade and would hardly be able to discuss with anyone in LSQ. You could say I am what the deaf community feared I'd become, which kinda sucks Thus, I feel like he might have some sort of luck: he will never lose that part of himself.

Something else. Have you heard of FM systems? If yes, sorry for wasting your time and interfering in what doesn't really concern me. If not, it's definitely worth taking a look. It's some sort of emmitter-receiver system which I mostly use in school to help me undrstand the teacher when there's loud noise in the classroom. If found it extremely helpful when, for instance, there was chatter and such. It has the advantage of being extremely simple of use and being undisturbing (english is not my native language, so I do not know if this word exists, but I am too lazy to chech out, sorry) for the other regular students. There is also a similar system used for TV. Mind you, I live in a country where this is all paid by the government, so it might not be as adfordable where you live.

What implant model does your son use? I have one Platinum and one Naida ( by Advanced Bionics).

Did he say how he felt when he first wore his CIs? For me, it sounded a bit like morse code (edit : dumb me, he didn't hear anything before)

Finally, how well does he cope with the whole thing? Since it's been something like 18 years since my first implant, I have somewhat lost the novelty feeling, so I'm interested by his reaction.

ahavahlove10 karma

I recommend you take at least 3 years of college level classes if you want to become fluent in ASL.

We plan to use the FM system when he goes to school. It wild definitely help him a lot.

My son wears the Nadia's q90. He was 10 months activated and didn't really react to sounds until about 1 week after activation.

He's really rough with his CIs. Used to pull them off when he was bored. We often had to keep him busy to get him to keep them on. Now he wears them all day and asks for them in the morning.