AlleyCat

Very good statement!

Deafness

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CJB

I would want to give my child a choice.

If my child is Deaf and feels natural being Deaf, why should I force him to be hearing? Why should I force her to conform to the mainstream? I can give my child both the ability to hear better and the ability to choose his identity by giving him powerful hearing aids. And since so many people think CI users don't need sign language, I would be closing more doors on her than I would be opening for her. Most people treat CI users like they are perfectly hearing, but the fact of the matter is that the CI doesn't completely match the hearing that occurs naturally in humans. So would I really be only opening doors?

vallee

My CIs have opened doors.

All my ci friends still wear at least one of their CIs. The majority of my CI friends find a CI rewarding. Most of my CI friends believe in their CI. Many of my CI friends understand spoken words and are not as frustrated in settings as they were with hearing aids.

CI are personal choices. Unless you either have a child or yourself, it is difficult to place yourself in my shoes. Could have, would have, should have, won't or don't are so easy if you are not faced with these choices. The interesting thing about FDA shocking results, well give the real results. Give the results that are truthful instead of the shock value. There is no shock value to me. I live this everyday for the last 2 + years. I see the rewards, I enjoy the value of these.

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Right and Left Implanted July 19, 2007
Activated August 9, 2007
Both Advanced Bionics Harmony

deafdude1

Why did some of them get 2 CI if they only need and wear one? Did they have problems with their first CI and rather than remove their first CI, they went ahead and got a 2nd CI in the other ear? Been a while since you posted on alldeaf. We miss you!

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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog

dreama

Yes Vampy: I mean understand.

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I speak for those who cannot speak for themselves.
http://www.fightfoca.com/

rockdrummer

Well said. My gut feeling is that those who continue to generalize really do know better but there is an underlying agenda that motivates them.

vallee

thank you, been very busy with work and family

I have one friend who has chosen to not wear one of her CI as it causes a vibration. She had it replaced and it is the same after the second surgery. She does just as well with one CI. It does not vibrate unless she wears the speech processor. The majority of my friends have two CIs and love them.

__________________
Right and Left Implanted July 19, 2007
Activated August 9, 2007
Both Advanced Bionics Harmony

faire_jour

If your child is severe-profoundly deaf, the ability to listen and understand speech will not be provided with hearing aids. That is a simple fact.

If YOU sign, you are giving the child the opportunity to sign, how does have a CI affect that in the least??

Oh, and a CI doesn't make someone hearing, it gives a DEAF person the ability to access sound.

CJB

Yes but I want to let my child choose for himself if he wants a CI or not.

I can sign to my child and expose her to ASL but that doesn't change the fact that the vast majority of hearing people view CI users as hearing. You and I and many people on this forum might know that a CI doesn't make someone hearing but a lot of people don't know that and will not understand how someone with a CI can have a Deaf identity. And while these forums might be more accepting of CI users, many people in the Deaf community reject CI users, leaving them stuck halfway between the Deaf and hearing worlds.

faire_jour

I have never ever met a Deaf person (in real life) who was negative to my child for having a CI.

You see it as stuck between, I see it as having the best of both.

My child will never come to me and say "Why didn't you give me the opportunity..." because I did. I have given her every tool she could possibly need to be successful in the world. You would be closing a door. Why? Because of what someone else may think???

souggy

I have to give this to faire_jour in this case.

CI does not make anyone hearing, however the sheer amount of CI users out there in the new generation that are going through the same struggles as the generations before them means that they will still have a Deaf identity regardless of anyone that might reject them. In about 5, 10, 20 years time, you will see CI become accepted just like hearing aids were.

The only problem with CI that many people believe that a person's "body is [their] temple," and surgery is often seen as an invasive procedure, which is more of a cultural, religious, philosophical or legal reasoning rather than a medical reason.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

deafdude1

You are welcome! Youll notice since you left, there's been alot of debate on stem cells as well as HAs vs. CI. Does the CI that causes a vibration not work at all? If people do as well with one CI, what's the point of two CI? They can always wear a HA in the other ear and go bimodel! Howcome so many of your friends have two CI if insurance rarely covers a 2nd CI and few can afford the cost of CI out of pocket?

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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog

faire_jour

Once your child is old enough to choose, you have already made the decision for them. Not giving a CI before window of language learning closes (about age 7 or 8) is closing the door on the ability to listen and understand spoken language easily.*

*In the case of a profoundly deaf child from birth who isn't raised orally

deafdude1

Then how do you explain the fact Phi4sius did great with a HA for 25 years? His loss has been severe at frequencies above 250Hz! I know a bunch of severely deaf that do great with HAs. I read that most with "only" a severe loss(less than 90db) do great with HAs and that even up to 100db loss, some people still do fairly good. But even for those that only have partial understanding of speech, lipreading can easily fill in the missing gaps. Then there's sign language(and writing) as another means of communication. I don't sign as im 100% oral and have learned to master lip reading.

My hearing friends and family don't see this as the case once stem cells becomes mainstream.

That's a reason why my family and friends are excited for me to get stem cells but don't believe in CI. Stem cells can be injected in the arm and they migrate to the ear or any body part to repair the damage! Phi4sius knows about this too.

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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog

CJB

No, I wouldn't be denying my child the CI because of what others think. I want to let my child choose which doors he wants to open and close. I want my child to choose if she wants to use HA's or the CI, sign language or no sign language. I'm against making that decision for my child.

I'm neither pro-CI nor anti-CI. I'm just anti-choosing my child's hearing status.

CJB

I would talk to my child about it before the age of 7 or 8. I just don't think I have to get my 18 month old infant implanted. Up until then I would give my child both spoken and signed language so that they could develop language while still in the window for learning language.

faire_jour

Some people can do ok with hearing aids, but it takes a ton of work. My daughter's SLP put it this way: "With hearing aids, about 15% of kids were able to successfully grow up oral only, 85% were not. With CI's the percentage has been reversed.".

deafdude1

Same here. Actually id wait till stem cells was available then let him choose between being deaf or being less deaf, between hearing a little with HAs or alot with HAs. If for some reason he doesn't want to hear more, oh well it's his ears and choice. Guess the $30,000 cost will go towards the downpayment on his house. He may feel that stem cells isn't worth the cost and that there's more important things in life than hearing better.

You know, there's other ways to develop language. There's prelinguals who were born deaf who didn't get a CI till age 40 and they did fine with CI. The only difference is it takes longer to train your brain. If I ever have children, they will be looking at the choice of stem cells, rather than CI as they grow up. Ill be getting stem cells for myself, but the choice would be up to my children once they are old enough to decide. By then, stem cells should be FDA approved. I won't be getting them stem cells experimentally, it's not right to put them at risk. The risks I take are my own as im an adult and can decide.

It also takes a ton of work with CI. I grew up oral only with HAs and my hearing was always worse than Miss Kat's. Many parents do teach their deaf children sign language regardless if they wear HAs or CI. If the children are sent to speech therapy, they can learn to speak clearly and read lips too. The only difference between HA and CI is there's a better chance to understand more speech without lipreading with CI, everything else is equal with proper training and tons of work. My parents put alot of work into me and I am thankful for this.

My parents said I actually taught myself to read lips on my own from a very young age. So it comes to me as naturally as hearing comes to you. Those who are late deafened probably won't have such a great ability to read lips and will struggle alot more than me. Hearing people rarely see the need to learn to read lips. It's only when they start going deaf do they learn to read lips. But for them, lipreading is a 2nd language, hearing is their native language. For me, reading lips is my native language and hearing is a 2nd language that ill have to learn once I get stem cells.(but it's the same story for those getting CI today)

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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog

ref74

Sorry, but it is pretty easy to say "if I had hearing impaired children"... If you really have a child with this problem your role of parent is to take decisions for him. Parents MUST decide for their children. And you have to decide for what you think is the best option. Making this means considering carefully all the pros and cons, evaluating the risks and being strong in going over the worries, because every parent would kill himself instead of exposing his child to any risk.
What's the sense of the role if you simply wait they grow up? You avoid responsibilities and the risk of doing something wrong,letting your child to take the risk.
There are so many decisions every mother and father take for their children, think about cultural habit, religion, education, experiences offered. What should they do? Do noting, close the children in a room waiting for them to grow up and when they are old enough ask them if they want to be catholic, protestant or whatever, if they want to go to a technical, scientific, or professional school, if they prefer to be free, or to follow rigid rules while they live in the family? And if any medical decision has to be taken, easy: if you can, just wait until they can understand and let them to decide...
How can you think like that?!?!
The parents have to decide for their children, until they can decide for themselves.
Parents who decide to implant their child simply play their role. They give their child the possibility to develop spoken language more easily (hopefully) and give the child the possibility to choose between spoken language and sign language at the end. In many cases if you decide to not decide, you are deciding anyway. The decision is making your child signing only.
That's OK, parents could decide the want their children to be signing only, there is nothing wrong with that. But it has to be taken in mind that deciding to wait until they can decide for themselves is the opposite of being a parent.


And CBJ, waiting till your son is 6 or 7 and let him decide is a nonsense. A child cannot be really able to make such an important decision at that age, c'mon!

souggy

It's not nonsense to certain people. You have no idea what his cultural background is. Some even retain the old pre-Industrial belief that as soon as the child could walk, they are "adults" capable of making their own decisions.

Certain religious branches believe that once a child turn somewhere between 8 to 13, they should be treated as adults upon the "age of reason" and have complete control over their lives. Of course you will see variations of this anywhere between eight to sixteen.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

ref74

Well, you are right, it is always a matter of personal ideas.
In my experience I would say that a significant part of the teenagers could not have the ability to make such a choice properly... A 6 yr-old child is very young, besides cultural habits!

deafdude1

Ill do the same as my parents did for me. My parents gave me the best HAs(at the time anyway) and sent me to a speech therapist twice a week. They also trained me to speak clearly and understand some speech. I thaught myself to read lips, if not, they would teach me that too. None of this carries any real risk. It's hard work however!

Because being deaf is not a health issue. It's "inconvenient" but hard work and training can compenstate nicely for this disability. Many Deaf people don't even consider their deafness a disability but just a normal alternative to being hearing. I would want my child to have the best possible hearing but what if this isn't what my child wants? Alot of the Deaf on Alldeaf have no interest in a CI or even stem cells, they are perfectly happy/fine just the way they are and that's their choice!

Because there's no health risk to any of the above! But when the children become adults, they get to choose all of this and can always change.

For life or health preserving medical decisions, me and the doctor decide. For anything elective, the child decides when he's older or an adult. Cochlear implants(and stem cells for the matter) are borderline elective. They are a "want" rather than a "need" since it's been proven that deaf people are just as capable(saying they are less than capable would offend them) I developed spoken language just fine and every deaf child can develop language with speech training and going the oral route. Some parents choose both oral and sign language. I was never denied sign language, I simply chose on my own.

The choice to sign was left to me and I decided no at a young age. I taught myself to read lips and it's as natural to me as signing and speech is to others. Because a CI is permanent, you can never undo this. The child can always get a CI as an adult but can never undo CI if forced on the child as residual hearing goes bye-bye. Ive read around and there has never been a child who regretted not being forced with a CI, in fact they are thankful that the CI decision was left to them to decide when they were old enough. But ive read many children who stopped wearing CI and resent their parents for forcing CI on them. If CI(and stem cells) opens doors, I will let the child open the doors himself.

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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog

ref74

They gave you the best they had at that time. CI was not an option. Conservative choices (wihout associated risks) are not always correct.
People can decide not to go for a CI, obviously, but it is the best technology now available. The risk of not going for it is exposing the child to a much higher unsuccess probability in developing speech. Nothing to do with health, OK.

What about those who are not happy with their status? I read a lot of people here saying they love to hear and they would like to hear better. You are among those. In principle those people are not perfectly fine with their hearing impairment.
Accessing CI or stem cells too late limit the potential to use the hearing you get at its best. In other words the probability to get the best out of it is STRONGLY decreased. This is not questionable.

Obviously I do not think deafness is bad by itself, the only bad aspect is that it may force to loose a significant part of the social world (the hearing one).
My personal and very humble opinion is that it is really ideal to accept our own status and live happy with it, nevertheless many deaf people happy with their deafness would be happy to be hearing if they could have access to it in the past, somehow... I do not want to think for any other, and I do not want to offend anybody!! This is just a personal opinion.

This is not true. Parent's cultural decisions cannot always be changed. The way children are grown up is so important for the persons they will become. Only a few can really change completely who they are.
OK, there is not health involved here, but nobody can tell me that these things are less important.


You did it, but it is simply not true that every deaf child can do it. Of course a lot is due to the family and support, but it is pretty clear that for profound hearing loss only a minority does it.

Choosing for CI (or stem cells when will be available) does not neglect the access to signing language at all. Do not choose CI can neglect access to speech.
Anyway there is nothing wrong with the decision to neglect speech. I was questioning the decision to postpone the decision, simply because this can have important effects.

The internal part of CI is permanent, but I do not see the problem. You can decide not to wear the outer processor and you're not hearing anymore. Thinking you are "marked" because you have something in your head sounds a bit like a extreme religious concept and can be translated to other things like metal plates for healing bone fractures (also bone fractures usually are not life threatening and can be considered an "inconvenience", but I doubt somebody will refuse to get a metal part to be able to walk again)...
Anyway, the internal part can be removed. It's surgery, but pretty simple.
Loosing the residual hearing is not a problem if it is negligible or absent and nobody can state it cannot be restored in the future with stem cells/gene therapy... It's pure speculation. Moreover, if anybody wants to go for stem cells, it's pretty clear he/she is not so fine with deafness. Finally, without access to spoken language by CI, for many people (deaf or with very profoundly hl) stem cells could be good for accessing to sounds and noises only.

faire_jour

That doesn't make sense. Are you giving the child sign? Then you are making the choice that they will be exposed to sign. That is adoor you forced open. Why is that ok but a CI isn't? Everything you do, every choice you make, everything is being "forced" on the child, the other things you just happen to think are right.

WeeBeastie

Being the hearing mother of a toddler born with a severe loss, I can tell you EVERY choice I have to make for her is not taken lightly. From the color of her ear molds to planning a future move to be closer to the state school for the Deaf. No choice I've made is easy. Not one choice has lifted the weight from my shoulders but I know in my heart that every choice has been the right one.

We are not implanting and will not be, even if her hearing deteriorates. I have many many reasons for this but have to say my biggest reason would have to be it just doesn't make sense to me. Why would I implant her? She's not ill. It's not life or death. It's not even a matter of 'quality of life'. There is absolutely no reason I can think of to make that decision for her, to risk her residual hearing unnecessarily. She will grow and develop completely supported by her family and the Deaf community. When she is much older (16+) and ready to make an informed decision and take responsibility for her health care, if she decides that a CI might be something she's interested in, we'll help her with that. Until then, the only rules we have are she will continue to wear her HAs and will continue speech.

Even at two and a half, my daughter has made many choices regarding her hearing loss on her own and we are honoring those. Right now, she's choosing to be Deaf. That's not saying she'll never have a spoken language. She could wake up tomorrow and suddenly have it click. Kids are funny that way, but if it never happens, who cares?

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WeeBeastie
Hearing mom with a Deaf child
3y/o profound and aided Bi-bi student

WeeBeastie

I disagree.

At the end of the day, when the processor comes off, the child is still deaf. Some form of visual language is absolutely necessary to communicate. However, exposing a child to a language is absolutely nothing like a CI. A language is not invasive and can be dropped and forgotten. A CI is permanent. Even if it is no longer used it will forever effect a person.

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WeeBeastie
Hearing mom with a Deaf child
3y/o profound and aided Bi-bi student

faire_jour

I agree that visual language should be given, but NOT giving auditory information forever changes a brain too. Why not give everything you can?

souggy

It's called "self-ownership."

Ask any libertarians, anarchists, credobaptists or whatsoever what it means.

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"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman

faire_jour

I am all for child led parenting, believe me, but the child doesn't even know the options.

souggy

Then you realize that people that embrace the concept of "self-ownership" don't believe in touching a person's body, right?

__________________
"It is my task to convince you not to turn away because you don’t understand it." - Richard Freynman