"Letting the Child Decide"

[Cheri]

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

No, She decide to let the child be it's true individual. I applause her for that.

 

[Angel]

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.

:smiling: I love this girl!!

 

[R2D2]

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.

Well said.

 

[R2D2]

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

Dreama,

What are your thoughts about those implants that they are now trialling for blind people? I understand that at this stage it's only for people who have certain types of blindness but it seems like they are getting promising results.

Do you have the same opinion for this technology as you do with CIs?

 

[R2D2]

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?

You've expressed that so well. No one knows how a deaf child is going to feel as an adult and this needs to be taken into account by providing them with the tools for making their own choices. As with other groups, we are very diverse lot and we do not all feel the same way.

I also think that if parents work hard on establishing an open and communicative relationship with their children, they will probably avoid much of the problems that others have experienced. It sounds like a lot of the more difficult stories came from homes where parents just left their children to function in the mainstream without appreciating that they are different, are socially challenged and need to relate with others in their position - I think that parental involvement is very important here.

 

[shel90]

You've expressed that so well. No one knows how a deaf child is going to feel as an adult and this needs to be taken into account by providing them with the tools for making their own choices. As with other groups, we are very diverse lot and we do not all feel the same way.

I also think that if parents work hard on establishing an open and communicative relationship with their children, they will probably avoid much of the problems that others have experienced. It sounds like a lot of the more difficult stories came from homes where parents just left their children to function in the mainstream without appreciating that they are different, are socially challenged and need to relate with others in their position - I think that parental involvement is very important here.

True..u got a good point. That's why I feel this way..my mom was a single mom raising us and she focused on my brother more than I do cuz he struggled so much with his deafness and it looked or seemed like I was just fine as a "hearing" person. I was left to fend for myself while my brother got all the support. That's why he grew up to be a happy and well adjusted adult full of confidence while I didn't. Oh well..I don't blame my mom..just the specialists who kept telling her that I am better of not associating with the deaf community and not learning ASL. *sighs*

 

[SxyPorkie]

I don't understand the characterization of "letting the child decide" (whether to get an implant). I see this many places as the sole argument against giving infants or young children a cochlear implant, with the only reason given being that it is simply bad because parents shouldn't be making important decisions for children. I don't think this makes sense.

First, as children, they don't make decisions for themselves. Their parents, whether they are good parents or bad parents, make the decisions for the child because they are unable to.

The child does not decide when its diaper is changed, when to watch TV, when or where to go to school, what he or she eats, what clothes to wear, or what hobbies to have. All of it goes through the parent for approval. The child may think he or she is choosing at times, but the parent is really making the decision. If the parent agrees with what the child of any age suggests ("I want ice cream for dinner!" "I want to wear shorts to school to play in the snow!" "I want to go to private school"), then the parent can make the decision to allow that. If they don't agree, the parent makes the decision to not allow that suggestion.

Either way, the parent is making the decision, not the child.

I hear over and over again that it's not right for the parent to decide on the CI issue. The truth is that the decision to not implant the child is also making a decision for the child. That's what parents do. They try to make the best choices for their child, knowing that that child may grow up to hate the choice we made for them. ("I hated my hair." "I hated the school you sent me to" "I hated that you made me play a musical instrument") On the other hand, they may have hated it while growing up, but then appreciate it when older. We don't know what they'll think when they're older.

Why don't we just get real and admit that when we say "it is wrong for the parent to decide" what we really mean is "I don't know if the CI fits with my values or goals, I'm not sure it will enhance my child's life, and I am scared that if the CI doesn't won't work well that my child will resent me for putting me through all the therapy and not fully developing my ASL. I'm also scared that he or she will lose some of the feeling of deaf culture which I think is important. The "benefit" does not outweigh the risks to me, and that's why I'm making this choice for my child."

I think the reasons why some make the decision to implant their child are clear on this board, but it boils down to thinking "I think that there are advantages in this world to being able to hear, understand, and respond to the spoken word, I think it will enhance my child's life and opportunities, and I am scared that if I turn my back on this technology in the early developmental years that when my child grows up and understands that the opportunity to develop those skills are largely diminished, he or she will resent me. The benefits outweigh the risks of not implanting, and that's why I'm making this choice for my child.

Good post.... I had known few children as they become teenagers.. they resented of having CI... they even told me the felt they were not accepting them as deafies.. they were forced to have it implanted..... THERE ARE LOTS OF CONS AND PROS...

 

[R2D2]

True..u got a good point. That's why I feel this way..my mom was a single mom raising us and she focused on my brother more than I do cuz he struggled so much with his deafness and it looked or seemed like I was just fine as a "hearing" person. I was left to fend for myself while my brother got all the support. That's why he grew up to be a happy and well adjusted adult full of confidence while I didn't. Oh well..I don't blame my mom..just the specialists who kept telling her that I am better of not associating with the deaf community and not learning ASL. *sighs*

I wondered why you said you didn't learn ASL until adulthood when you had a brother who signed! So basically he got taught ASL and they told you not to learn it? That must have been hard on your relationship with him.

Yes I think that generally back in the 1960s, 1970s and 1980s parents and children didn't really talk or share their deepest feelings - it just wasn't done. And it has caused a lot of damage - not just in this area but in many other sections of our society. Fortunately today, parent-child communication is encouraged and I think the need for peers in the same boat is much more importantly recognised.

 

[Ariakkas]

Circumcision is done for hygiene purposes, or religios purposes

umm...you need to update your info. Uncircumsized penises facilitated easier masterbation, this was seen as "dirty" to religious zealots, thus they cut off the foreskin to disuade young boys from masterbating.

america and israel are the only countries who circumsize thier young boys, other, less "clean" countries across the world have no problem with hygiene on uncircumsized penises.


we do it for cultural and traditional reasons

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.

this is an honest question....how many "complications" or deaths have resulted from CI surgery? Ci surgery vs any other surgery? how does it compare in risk vs reward?

 

[shel90]

umm...you need to update your info. Uncircumsized penises facilitated easier masterbation, this was seen as "dirty" to religious zealots, thus they cut off the foreskin to disuade young boys from masterbating.

america and israel are the only countries who circumsize thier young boys, other, less "clean" countries across the world have no problem with hygiene on uncircumsized penises.


we do it for cultural and traditional reasons





this is an honest question....how many "complications" or deaths have resulted from CI surgery? Ci surgery vs any other surgery? how does it compare in risk vs reward?

Assuming that every child have been rewarded from the CI surgery. Unfortunately, that's not the case from what I have seen but others said they have never seen a child not benefitting from the CIs. Dont know if our meaning of "rewards" r different or it just happened due to the reason I work with deaf children and they don't? Maybe that's why we r all arguing a pointless argument.

 

[Ariakkas]

risk vs rewards is an idiom meant to assess wether the cons outweigh the pros....the good outweigh the bad, the negative outweigh the positive.



basically, is the chance of something bad happening worth all the benefit they will get from the surgery. how high is the chance of something bad? what is "something bad"?

in your case, your stating that not all CI's work(risk). but some do(reward). is the chance of it not working, worth the chance of not being able to hear of it would actually work? is the chance of it working, worth the risk of it possibly not working? same question, flipped over.

 

[Cole's mom]

So I am new to posting on this board. Our 19 mo old son has been implanted for 2 months and is doing wonderfully compared to the "experts". I wholeheartedly agree with your point Drew's dad, however, all the debate has given me pause in what the AV and oral experts say. I can understand why we should do all the AV therapy to give him the best chance with the implant, but what I can't figure out is the lack of willingness to expose and surround them with sign as well? Don't get me wrong, I didn't know 1 deaf person before we found out about our son 6 months ago, and all the choices are so overwhelming. Just speculating, but could part of it be that the people who descend on parents of newly diagnosed deaf kids are those who seem to be more of the oral and AV mindset, while the ASL and Deaf community seem to hang back and wait for you to approach them. Part of me wonders if it is because the healthcare industry (ie for profit) stands to benefit, while the Deaf community doesn't, therefore aren't as motivated to get to know new families and come along side them in the same way???

 

[shel90]

risk vs rewards is an idiom meant to assess wether the cons outweigh the pros....the good outweigh the bad, the negative outweigh the positive.



basically, is the chance of something bad happening worth all the benefit they will get from the surgery. how high is the chance of something bad? what is "something bad"?

in your case, your stating that not all CI's work(risk). but some do(reward). is the chance of it not working, worth the chance of not being able to hear of it would actually work? is the chance of it working, worth the risk of it possibly not working? same question, flipped over.

U have a good point. it is for the parents to decide. For myself, I don't like the idea of implanting children BUT as I have ALWAYS said..it is none of my business and I have never changed that. Just because I don't like the idea doesn't mean I will reject people who like the idea or follow thru with it.

For me, because I am deaf and know what it is like, the risks are not worth taking on my own child. two very very personal reasons for that due to my family's bad experiences with surgery. Can't reveal it due to respecting the privacy of my family.

 

[deafdyke]

Colesmom, I think too it's b/c the oral option is a VERY well funded industry. Easyto make money off of speech therapy, and expensive gizmos and stuff.............whereas for Sign, there's no way for hearing people to make money!
I think that in OBVIOUS cases that kids should get implanted. There is even a form of deafness (auditory nereopathy) where hearing aids DON'T help!
But only a small percentage of deaf kids will not benifit from hearing aids.
I think that in ambigious cases, (ie where there is SOME benifit from hearing aids) that families should have to wait a bit.
Also, BAER tests can be very inaccurate......god, every dhh here, their parents have experianced the "now I hear you now I don't syndrome"
I've heard of kids testing as PROFOUND on ABR/BAER and testing as more aidable on traditional audiograms!

 

[flip]

So I am new to posting on this board. Our 19 mo old son has been implanted for 2 months and is doing wonderfully compared to the "experts". I wholeheartedly agree with your point Drew's dad, however, all the debate has given me pause in what the AV and oral experts say. I can understand why we should do all the AV therapy to give him the best chance with the implant, but what I can't figure out is the lack of willingness to expose and surround them with sign as well? Don't get me wrong, I didn't know 1 deaf person before we found out about our son 6 months ago, and all the choices are so overwhelming. Just speculating, but could part of it be that the people who descend on parents of newly diagnosed deaf kids are those who seem to be more of the oral and AV mindset, while the ASL and Deaf community seem to hang back and wait for you to approach them. Part of me wonders if it is because the healthcare industry (ie for profit) stands to benefit, while the Deaf community doesn't, therefore aren't as motivated to get to know new families and come along side them in the same way???

Yes, you are right. It's not possible to sell a culture or society/community. Keep up your thinking

 

[Drew's Dad]

So I am new to posting on this board. Our 19 mo old son has been implanted for 2 months and is doing wonderfully compared to the "experts". I wholeheartedly agree with your point Drew's dad, however, all the debate has given me pause in what the AV and oral experts say. I can understand why we should do all the AV therapy to give him the best chance with the implant, but what I can't figure out is the lack of willingness to expose and surround them with sign as well? Don't get me wrong, I didn't know 1 deaf person before we found out about our son 6 months ago, and all the choices are so overwhelming. Just speculating, but could part of it be that the people who descend on parents of newly diagnosed deaf kids are those who seem to be more of the oral and AV mindset, while the ASL and Deaf community seem to hang back and wait for you to approach them. Part of me wonders if it is because the healthcare industry (ie for profit) stands to benefit, while the Deaf community doesn't, therefore aren't as motivated to get to know new families and come along side them in the same way???

My personal experience is that the only resources made available to me initally stressed a deaf school/asl program. All of the information we have gathered on cochlear implants is from our seeking it out - in other words, we were not approached by anyone at all.

In the hospital, the newborn screening audiologist told me that Drew "referred" on the test and that a diagnostic test would need to be performed. We were given a list of about 20 places in the general area that "might" perform the test. My wife called all 20, and only three would do a diagnostic ABR on an infant. We were not provided with any hearing loss literature or deaf school resources at that time. It seemed as if we were the only people in the State with a child that did not pass the test.

Of these three places, the soonest we could get the test performed was three months from that date, which we found to be ridiculous. Therefore, we tried to make a connection to someone who could do this test sooner. My uncle knew a cochlear implant surgeon in St. Louis, so we drove 8 hours to get the ABR done, meet the surgeon to ask questions, and went to the Moog School and witnessed many CI kids first hand at that school. It was quite amazing.

Once we had the diagnosis, we were linked with state resources which favored the ASL type of programs, or perhaps would offer a total communication program as well.

After that, we did two more hearing tests, spoke to a surgeon in Cincinnati, visited the Ohio Valley Voices oral school, interviewed a surgeon in Columbus, visited the Columbus school, visited and interviewed the Alexander Graham Bell school, several therapists, and sought out ASL resources for us to use personally.

I would have preferred that information be provided for us (especially right at the newborn screening), but that was not the case [no one wants to be the one to give the true diagnosis]. I would have preferred that people seek us out, either ASL or oral, but that did not happen either.

 

[jillio]

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.

First off, you are adventitiously deafened, which gives you a different perspective than one who has been deafened from birth or shortly thereafter. You have a sense of loss associated with loosing your hearing, as one in the second situation does not.

Granted, as the mother of a profoundly deaf son, I have had to live with the impact of his deafness. However, I have not had to live as a deaf individual. That is quite a different situation. He is the one who lives as a deaf individual.I choose to do what I was able to do to share the expereince of deafness with him, not demand that he do what was necessary to share the experience of hearing with me. As the parent, it is my duty to make the adjustments necessary for my child, not vice versa. To place the burden on the child is to ask the child to take on the responsibility of an adult. I firmly believe that is an unfair and overwhelming burden for the child, and a selfish request from the parent.

 

[jillio]

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.

Did your parents expose you to sign and the Deaf community?

 

[jillio]

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.....

Actually, if I so choose, I can TALK verbally to my son, he sppechreads extremely well, and also has adequate oral skills to communicate int hat mode when necessary. However,, becasue I respect him and his way of life, I will most likely coose to sign with him, not to him, as communciation between us is a shared experience.

 

[jillio]

:smiling: I love this girl!!

too!