"Letting the Child Decide"

[ismi]

How about surgery to correct bow-legs (children can STILL walk with bow-legs although its much more difficult,)

Having had this kind of surgery twice as a relatively young child, I can only say that I am very glad it was not my choice at the time - I was very resistant to the idea of surgery.

Which brings me to my second point - those of you who are saying that a CI is different because it's surgery ... have you ever actually had surgery? It's not nearly as big a deal as you might think. (Or hey, maybe I'm biased after having had three major surgeries and a handful of minor ones before I entered high school.) If you want to argue on bodily integrity, that's one thing - but arguing that surgery is necessarily a traumatizing experience for a child is just inaccurate.

 

[LTHFAdvocate]

Who is the one that lives their life with deafness--the parent or the child. The child lives as a deaf individual and that is an experience that no hearing parent can fully understand, as they have never had the experience. The one who lives with being Deaf/deaf is the one who has the right to decide how they want to cope with that.

While I respect your right to your opinion, I completely disagree with several aspects of this statement. I am in the unique situation that my hearing impairment developed long after my child's did. We both have congenital sources to our impairment, but her impairment started at birth and mine didn't start until I was 41. Becoming hearing impaired did not change my understanding of my now-teenage daughter's situation one iota. It did not alter any of the decisions I have made for her since then, nor has it made me think any differently of any of the decisions I have made for her in the past.

While a hearing parent of a deaf child may not be deaf themselves, they certainly have to live with the impact to their daily lives of having a deaf child. If they decide that the implant is a better option for their child and their family, that should be their choice. By the time a child is old enough to make that decision for themselves, the time for optimal implant results has long since passed.

 

[Tousi]

The problem I see with waiting till the child has the mental/emotional capacity to make this decision is that the window of opportunity to acquire speech, literacy, the whole ball of wax is missed cuz the very young child's brain is at it's most plastic, picking up and learning fast, etc.

I don't envy the parents here...it's a tough job. Go easy on them if you can.

 

[Silentwolfdog]

I agree with you that it's a choice, doing the one or the other. Not giving CI is a choice, too, of course. But you are also writing beyond this point pretty early in the post. In this last part of the post, I understand you try to justify making the choice of going for CI. Your arguments is that deaf kids might get upset when they grow up if you do not give them CI and speech training.

This part of your post still puzzles me because I have never ever met a deaf person that blamed their parents for not giving them CI in early child hood, or insufficent speech therapy. Never..... How is it possible to fear something that never has happened, if not anyone out there have met this kind of deaf people?

I always told my parents I wondered why they didn't get me a CI. I always regretted not getting CI. I would have rather knowing if it actually worked or not than live my life wondering "what if."

They told me they were trying to follow what other deaf person told them. They were trying to do what's best for me, I know that. But it kinda suck because I am in hearing world more than deaf and I can't communicate with them at all. No one can really predict the future though...I won't hold grudge against my parents, because they are good parents and nothing in this world is perfect. I feel like I ended up paying for what deaf people said about CI but oh well.
I also think children really shouldn't make decide themselves, unless they asked for it. If a child told parents she/he want a CI badly. Then it is parent's job to explain what it is and make a child understand if he/she really want it or not. That's it.

 

[flip]

I always told my parents I wondered why they didn't get me a CI. I always regretted not getting CI. I would have rather knowing if it actually worked or not than live my life wondering "what if."

They told me they were trying to follow what other deaf person told them. They were trying to do what's best for me, I know that. But it kinda suck because I am in hearing world more than deaf and I can't communicate with them at all. No one can really predict the future though...I won't hold grudge against my parents, because they are good parents and nothing in this world is perfect. I feel like I ended up paying for what deaf people said about CI but oh well.
I also think children really shouldn't make decide themselves, unless they asked for it. If a child told parents she/he want a CI badly. Then it is parent's job to explain what it is and make a child understand if he/she really want it or not. That's it.

Thanks for sharing this with us, and I will then take back my words. Some of us(me) perhaps have to be a bit careful when telling that OUR view is the only true one.

This choice thing is sure not as simple as black and white. Remember this deaf girl that did not want to use ASL, and prefered spoken language. She had CI, too. Her hearing parents tried to influence her to socialize more with deaf people and use ASL, but she shunned deaf people. This is an good upside down situation, compared to many examples we know about from this forum. Every example is so different it's hard to say this or that choice is the right for everyone.

But I feel a major problem here, is that CI companies/doctors are making the thought process on a CI choice more confusing that it needs to be. First everyone could have one no matter what age, then you had to be a kid to get the best effect, then you had to be below 2 years, then you needed two CI's, then you had to be below 9 months, and now you need a good speech program in addition. What's next? I thought CI's had improved in the last 20 years, but looks like they are getting crappier? They could improve a bit when informing parents about CI, as I see from history.

But honestly, it is great see parents, like Drew's Dad, care much and getting involved in their kids, regardless of what choices you make.

 

[Liebling:-)))]

First of all, Cochlear Implant is a Surgerical Option.

Cochlear Implant is part of the body, and the body is the child's body. It's his/her decision. If he/she say no, then don't. If he/she said yes, then do it.

Let me tell you story about me getting a CI.

When I was 4 years old, my parents was thinking about giving me a cochlear implant. After they talked with the doctor, they thought "Maybe we are too pressure on our child to have surgery". They feel like they should wait till I raise and make my decision.

When my parents feel that way, today I felt so very thankful to my parents for respecting my body, and who I am. I didn't twist any word in that story, my parents told me the exactly same story.

But... I choose to have a CI surgery because of curiousity. It didn't work for me at all, some people argued that I was too old for CI, that was the reason why the CI was not very benefit for me. Maybe they are right.

Maybe all of deaf children and deaf animals should get cochlear implant, and the Deaf Culture will never be here. What would you think about that?

Also, I have some friends who raised with the CI. One of my friend I am going to share.

When she was 2 years old, she got a CI. Today, she HATE her parents. Why? Her parents refuse to communicate with her through the sign (even her parents knew sign) and will treat her shit if she didn't wear the CI, also discriminate against her deaf signer friends. Somehow, she told me that she probably don't want to see her parents again because her parents kept disrespecting her as being deaf.

I didn't mean to be against you for your child to have the CI, if you think that is the best thing for your child to have CI so she can have opporiunity to have good career and good social life and good for many things. I am just saying to not forget to respect his/her deafness, and don't make his/her feel like he/she was the lower because of her deafness, and don't stop him/her from social with other deaf signers because she is learning from her true being.

Also when he/she raise to his/her teenage, he/she ask you "Why did you put me on the operation for CI?"

My advice, don't simple say "I want you to hear", it could make him/her to think that you don't like him/her as being deaf, he/she might feel overreacted.

It's better to say "I gave you the operation for CI because I want you to have varies of good opporiunity for the life". Your child might feel that you want to support him/her in any way, and it also make him/her to feel that you are giving them the freedom.

If you want your child to have CI, just don't forget to not disrespect his/her deafness.

I´m not surprised after read your post because your post is an exact same what I collect from CI users and the parents of CI children in real life.

 

[Silentwolfdog]

Yeah. I think problem with the "war" is everyone think they only can pick one. Why not get everything (such as CI, sign language, speech training, etc.) and see which one work best with child? As long as parent is good parent and use common sense, then the child will be fine (well most of time I guess). If child ending up don't use sign language then that means CI is working, but if child does not like CI and it has no effects on the child then sign language is better.

I don't understand why there got to be one side we can join in. Why can't we try everything and see?

And I think it's easier to fix sight rather than hear. That's why I think blind people will be cured first before deaf people if such method exists. This is probably reason why CI look like it hasn't changed over years, or even seem backward.

However, those are my opinions.

 

[shel90]

Ok

Your decision your lives...no need to keep bringing these same old threads again.

Your decision so who cares what others think right?

 

[Tousi]

Ok

Your decision your lives...no need to keep bringing these same old threads again.

Your decision so who cares what others think right?

Ordinarily, yeah, I'd agree with you; however, my post above (#23)....I thought I'd insert it because that little point very frequently gets overlooked.

 

[Boult]

The problem I see with waiting till the child has the mental/emotional capacity to make this decision is that the window of opportunity to acquire speech, literacy, the whole ball of wax is missed cuz the very young child's brain is at it's most plastic, picking up and learning fast, etc.

I don't envy the parents here...it's a tough job. Go easy on them if you can.

agreed

 

[Drew's Dad]

But I feel a major problem here, is that CI companies/doctors are making the thought process on a CI choice more confusing that it needs to be. First everyone could have one no matter what age, then you had to be a kid to get the best effect, then you had to be below 2 years, then you needed two CI's, then you had to be below 9 months, and now you need a good speech program in addition. What's next? I thought CI's had improved in the last 20 years, but looks like they are getting crappier? They could improve a bit when informing parents about CI, as I see from history.

But honestly, it is great see parents, like Drew's Dad, care much and getting involved in their kids, regardless of what choices you make.

Flip, thanks for the compliment.

I am wondering if the fact that CI's have improved so much in the last 20 years is why all the additional therapy and work is now considered necessary. I think that if they were much less effective 20 years ago, there was not much practice needed to get the full impact of the CI to work for the user. I mean, if the max benefit was to hear louder sounds like yells, honking horns or lawnmowers, you wouldn't need much training to hear that.

However, now that the CI's are picking up birds chirping outside, a ticking clock or whispers in a quiet room, I can understand why extra work is needed. Making out the difference between a "sh" sound and a "ch" sound must take a finely tuned cochlear implant user.

I don't know if these thoughts hold water, but it makes sense to me as to why so much more work is suggested now...because there is a much greater possible gain in "hearing power".

Anyone think this makes sense?

[Oh, and you are right that more information needs to be out there. It is very hard to find it, which is why we started our blog.]

 

[Cloggy]

We all know how traumatic it is when hearing parents first discover their child is deaf..

Do you... really??

....and in most cases there will be doctors or audiologists pushing.... Not my experience. The first thing is HA's!! ....hearing parents toward speech therapy and cochlear implants and some will even warn the hearing parents not to expose their deaf children to sign language or Deaf culture.. and of course I know that the parents are the one deciding but however it doesn't seem to bother these parents much when the doctors or the audiologists are telling them what they should do for their deaf child but it bothers them more when other deaf people comes in here and speak their mind on what they think of this....I don't get it........ Perhaps because the doctors offer possibilities that are in sinc with the parents loving their child and wanting the most opportunities for them, whereas some deaf people will thell them they should not even consider and even the thought of giving the child CI is a straightforward conclusion that you do not love your chils AND you do not accept it's deafness....!! ....
Sounds like CI is the only way out of this because " now my child can hear ", nothing else matters....

It's not the only way out.... From all the doors in the house of deafness, CI is the biggest door from the house of deafness into the world of sound​

 

[Cloggy]

"Dad of Drew",
Excellent topic, touched upon often, but allways valid.

You will hear that argument from deaf people that do not have a deaf child.

I feel that a parent that says "the child should decide" (And I don't believe there are any hearing parents of deaf children in this forum that have said that.) actually are saying ... I'm too scared to take a decision, so I'll use that argument.
In fact, it is a decision, and it leaves the child in the future with less opportunities. In fact, the choice of the parent is reducing any choice the child has... and subsequently, the child might not have any other option then to continue as it has been growing up... deaf without sound.

The parent has two choices:
A: I want my child deaf, able to hear, or
B: I want my child deaf, unable to hear...
THOSE are the choices.....

In the case of "A", in the future, the child can make a choice to stop hearing. And very successful, and many latend-deafened people have shown.
In the case of "B", in the future, the child can make the choice to start hearing, but with nerves not been stimulated for 10 to 20 years, there is no guarantee. And even when sound is perceived, making sense of it is quite another thing. The brain never made the connections for hearing that it needs to make in the first 6 years of life...

Basically, the argument "The childs needs to decide." is a straightforward setup for future failure with CI..

 

[jillio]

If that's the choice for the child that a parent wants to make, then that's fine with me - but the parent is the one deciding how that child will cope with their deafness, at least until they are old enough to take their own path.

At that point, the results of the parent's choice will be either be agreed with and continued, or disagreed with and discarded. Regardless of which choice the parent makes when the child is young, and regardless of any change in that choice the child makes for him or herself when older, either way there is a result and impact that the child will deal with.

Either way, a choice was made for the child that they will have to deal with.

Actually, I was referring to providing everything short of an invasive surgical procedure, and letting the child choose the tools that are best suited for him. My child had exposure to ASL, the Deaf community, FM systems, hearing aids, AV therapy, and he had it all at the age of 14 months. He naturally gravitated toward those things that facilitated communication in the most natural way. A child is perfectly capable of giving you indications of what works and what doesn't, what is natural for them and what is so difficult that all it does is add frustration.

 

[jillio]

Why do we, time and time again, see people accusing parents of "not accepting" their deaf child if they get them implanted? Far from it, I see it as parents trying to give their child the best of BOTH worlds.

And since you mentioned the reason CI is wrong is because it is a non-emergency surgery, then I suppose getting a child's hairlip fixed is unfair and they should wait until the child is old enough to decide as well?

How about surgery to correct bow-legs (children can STILL walk with bow-legs although its much more difficult,) removing a child's tonsils is a non-emergency surgery too - quite often parents and their doctors chose to have this done before any problem has ever developed with the tonsils! Shame on them! The child didn't make that decision either.

How about circumcision? The foreskin isn't hurting the baby at all, so how dare they remove it??

I'm just trying to point out that "non life threatening" surgeries are done on babies and children *ALL THE TIME!!* and if that is the only reason to be against a CI, I guess its fair to assume you are also against every single other "non life threatening" surgery that a parent decides??

Circumcision is done for hygiene purposes, or religios purposes. I don't really think you can justify a CI as fulfilling a religious obligation, or as a procedure to improved cleanliness. Also this procedure isperformed using a local anesthetic, not general anesthesia. Ci is performed under a genral anesthesia, and therefore, the risks of complications are increased several fold.

 

[jillio]

"Dad of Drew",
Excellent topic, touched upon often, but allways valid.

You will hear that argument from deaf people that do not have a deaf child.

I feel that a parent that says "the child should decide" (And I don't believe there are any hearing parents of deaf children in this forum that have said that.) actually are saying ... I'm too scared to take a decision, so I'll use that argument.
In fact, it is a decision, and it leaves the child in the future with less opportunities. In fact, the choice of the parent is reducing any choice the child has... and subsequently, the child might not have any other option then to continue as it has been growing up... deaf without sound.

The parent has two choices:
A: I want my child deaf, able to hear, or
B: I want my child deaf, unable to hear...
THOSE are the choices.....

In the case of "A", in the future, the child can make a choice to stop hearing. And very successful, and many latend-deafened people have shown.
In the case of "B", in the future, the child can make the choice to start hearing, but with nerves not been stimulated for 10 to 20 years, there is no guarantee. And even when sound is perceived, making sense of it is quite another thing. The brain never made the connections for hearing that it needs to make in the first 6 years of life...

Basically, the argument "The childs needs to decide." is a straightforward setup for future failure with CI..

And you will also hear that argument from hearing parents who do have a deaf child. I am one of them. And to not provide that child with exposure to the deaf community and their sign language is a setup for failure in life.

 

[flip]

Flip, thanks for the compliment.

I am wondering if the fact that CI's have improved so much in the last 20 years is why all the additional therapy and work is now considered necessary. I think that if they were much less effective 20 years ago, there was not much practice needed to get the full impact of the CI to work for the user. I mean, if the max benefit was to hear louder sounds like yells, honking horns or lawnmowers, you wouldn't need much training to hear that.

However, now that the CI's are picking up birds chirping outside, a ticking clock or whispers in a quiet room, I can understand why extra work is needed. Making out the difference between a "sh" sound and a "ch" sound must take a finely tuned cochlear implant user.

I don't know if these thoughts hold water, but it makes sense to me as to why so much more work is suggested now...because there is a much greater possible gain in "hearing power".

Anyone think this makes sense?

[Oh, and you are right that more information needs to be out there. It is very hard to find it, which is why we started our blog.]

Sure this makes sense, and might be true. I just don't belive so based on what we have seen so far. The research in pre developed brain kids below 9 months old and the theories that they will benefit from CI is very speculative to me. I will be very surprised if this is turns out to be true, but I will not be surprised if we got new speculative ideas to make CI work as it was meant to, if this concept you are describing fails. I wish oralist could give us more hard facts and empirical evidence, than they are doing right now, making it easier to figure out what to do with your deaf kids.

 

[dreama]

And I think it's easier to fix sight rather than hear. That's why I think blind people will be cured first before deaf people if such method exists. This is probably reason why CI look like it hasn't changed over years, or even seem backward.

Not neccessarily. Please read this article about a blind man who gets his sight back but is basicly 'blind': Sight Unseen

 

[dreama]

Oops. Seem to have double posted so I'm going to delete this one.

 

[Cloggy]

And you will also hear that argument from hearing parents who do have a deaf child. I am one of them. And to not provide that child with exposure to the deaf community and their sign language is a setup for failure in life.

From what I read from you, you did NOT let your child decide. YOU decided that your child does not get CI...

In the future, I'll talk to my daughter and explain why we made that decision, and you will sign to your child and explain the same.....