Why adults choose CI's for their children

[shel90]

For the record I am not anti CI. I think that its an amazing piece of technology that does help many people. I also know based on my experience that its not an easy decision especially when it comes to implanting an infant or young child. I just think that for any parent to make an informed decision they need full access to the facts with regard to every aspect of success and failures. Otherwise you are not really making an informed decision.

Ohhhh..no no that's not what I was implying about u, Rockdrummer..being anti-CI.

My point was that it appears that you r providing important information that isn't well known to try to help others. My feelings from reading the other posts is that some parents here seem on the defensive side about the information u r sharing. I could be making a mountain of a molehill so I am just asking if my perspective is correct? At my work, when the audiologist explain the factors that contributed to the reasons for the CI not benefiting their children, the parents become defensive even though the audiologist made it clear that it wasn't their fault. It makes me wonder why get defensive? Sometimes things don't work out the way we want to especially when it comes to something as complex as hearing losses and the technology associated with it and it seems that the parents don't want to accept the fact that it can happen. That's my assumption.

I just was asking and if that's the case then help me understand why so I can understand where the parents of my students r coming from.

Thanks

 

[jillio]

jillio,

"Just because I disagree with you an some of your more innane points does not mean that I am anti-CI."

Actually, the word is "inane" and means lacking sense or substance.

Since I have mostly related personal experiences involving my daughter and the fact she has a ci (I guess that is the "information sharing" part of your diatribe) or that parents have the right to choose a ci for their children, please cite an example of one of my points lacking sense or substance.

Excuse the type, but since you brought it up: the word is "on", not "an".

The most recent INANE point would be "never misses an opportunity to say something negative about CI."

 

[rockdrummer]

Ohhhh..no no that's not what I was implying about u, Rockdrummer..being anti-CI.

My point was that it appears that you r providing important information that isn't well known to try to help others. My feelings from reading the other posts is that some parents here seem on the defensive side about the information u r sharing. I could be making a mountain of a molehill so I am just asking if my perspective is correct? At my work, when the audiologist explain the factors that contributed to the reasons for the CI not benefiting their children, the parents become defensive even though the audiologist made it clear that it wasn't their fault. It makes me wonder why get defensive? Sometimes things don't work out the way we want to especially when it comes to something as complex as hearing losses and the technology associated with it and it seems that the parents don't want to accept the fact that it can happen. That's my assumption.

I just was asking and if that's the case then help me understand why so I can understand where the parents of my students r coming from.

Thanks

I know Shel, my comments were just to clear the air incase others thought I was. Sometimes if you say anything negative about a CI you get labled as anti-CI which I am not. Thanks for the clearification though.

 

[jillio]

I know Shel, my comments were just to clear the air incase others thought I was. Sometimes if you say anything negative about a CI you get labled as anti-CI which I am not. Thanks for the clearification though.

Yep, it seems that we cannot express an opinion that contains both pro and con without the negative becoming the focus, and then we are labeled and treated as dissenters. I think that mostly happens when someone is still relatively insecure in their own opinions, and therefore mistakes open discussion for criticism.

 

[rockdrummer]

i enjoy this site alot it gives so much info. but when it comes to implanting children I am all for it. My son had his first implant at 16 months, he was born a hearing child and lost most of it due to eva.My husband and I prayed hard about this and we wanted to give our son the best opprutunity out there. we have 2 hearing children. Verbal is our first approach butr we are picking up on some asl. He will be going bilateral here real soon. I can't forget he's deaf, everytime he is in the bath, bedtime, swimming,it reminds us that he is still deaf.and that will always be apart of his life no matter what technology there is ..Any parent out there wants the best for there children.It's not a cure just a precious gift.

Samantha, Thank you for sharing your experience. All I would say is to expose your child to deaf culture and ASL so that he is able to communicate with others that are deaf. Most likely he will have deaf friends and like you said, he is deaf regardless. Plus you never know if/when the CI fails, you can always fall back on sign language to communicate. Just my opinion for what it's worth.

 

[jillio]

Samantha, Thank you for sharing your experience. All I would say is to expose your child to deaf culture and ASL so that he is able to communicate with others that are deaf. Most likely he will have deaf friends and like you said, he is deaf regardless. Plus you never know if/when the CI fails, you can always fall back on sign language to communicate. Just my opinion for what it's worth.

+1

 

[rick48]

Shel,

I do not think that "defensive" is the right word. I think what you are experiencing are parents who are willing to stand up and passionately correct the misinformation and myths constantly being spread about cis. I also think that the issue of cis for children strikes right at the heart of the parent/child relationship and naturally evokes a response.

If you can name any other area where people more frequently comment upon how parents should raise their children and question the decisions parents make for their children then cis, please let me know for I doubt there are many others.

Personally, we made our ci decision in 1989 and were called child abusers, Nazis, been told that we neither love our child, understand our child, nor accept her for who she is. We have been told that we are trying to turn her into something she is not, and of course there are those who advocated that deaf children, like our daughter, should not be raised by hearing parents at all but placed in residential schools for the deaf to be raised by "Deaf Role Models". Heck, I even sat across from the former head of the NAD on TV who stated it was wrong for us to have implanted our daughter.

With what other issue does this occur? Where else do you have people routinely tell parents that the decision they made for their child is wrong and how they are raising their child is incorrect?

Throughout the years I have met hundreds of parents who have either implanted their children or considered the implant for their child and universally they put a lot of time and effort into that decision and it was not one that they reached without a lot of careful consideration. In general, they were good and decent parents trying to do what they believe is best for their child. They know their children better then anyone else. That is why, when you stop and think about it, it is rare that you have a ci parent comment negatively upon a parent's decision not to implant their child or state that the parent should have implanted the child. However, some of us will react passionately and strongly to those who attack the implant or question the right of a parent to make the decision for their child.

True, a lot has changed in the last 18 years but there is still a long way to go. We still have those who cannot accept the fact that there are parents of successful ci children who chose a path that differs from the one they chose for their child or for themselves. Thus, even when they begrudgingly acknowledge the ci's benefits for children it is often coupled with the dire obligatory warning of some doom and gloom event that the child "may" later experience.

Therefore, when I read things like you should not implant your child because they won't be able to scuba dive deeper then 100 yards or become an astronaut or play sports, I still sit there and roll my eyes and shake my head. I know the ci is not for everyone and that not everyone will be able to benefit from it but I will not stand by and let misinformation go by unchallenged because it is too important to the parent out there who may be reading it and trying to make the ci decision for their child.

 

[Boult]

Shel,

I do not think that "defensive" is the right word. I think what you are experiencing are parents who are willing to stand up and passionately correct the misinformation and myths constantly being spread about cis. I also think that the issue of cis for children strikes right at the heart of the parent/child relationship and naturally evokes a response.

If you can name any other area where people more frequently comment upon how parents should raise their children and question the decisions parents make for their children then cis, please let me know for I doubt there are many others.

Personally, we made our ci decision in 1989 and were called child abusers, Nazis, been told that we neither love our child, understand our child, nor accept her for who she is. We have been told that we are trying to turn her into something she is not, and of course there are those who advocated that deaf children, like our daughter, should not be raised by hearing parents at all but placed in residential schools for the deaf to be raised by "Deaf Role Models". Heck, I even sat across from the former head of the NAD on TV who stated it was wrong for us to have implanted our daughter.

With what other issue does this occur? Where else do you have people routinely tell parents that the decision they made for their child is wrong and how they are raising their child is incorrect?

Throughout the years I have met hundreds of parents who have either implanted their children or considered the implant for their child and universally they put a lot of time and effort into that decision and it was not one that they reached without a lot of careful consideration. In general, they were good and decent parents trying to do what they believe is best for their child. They know their children better then anyone else. That is why, when you stop and think about it, it is rare that you have a ci parent comment negatively upon a parent's decision not to implant their child or state that the parent should have implanted the child. However, some of us will react passionately and strongly to those who attack the implant or question the right of a parent to make the decision for their child.

True, a lot has changed in the last 18 years but there is still a long way to go. We still have those who cannot accept the fact that there are parents of successful ci children who chose a path that differs from the one they chose for their child or for themselves. Thus, even when they begrudgingly acknowledge the ci's benefits for children it is often coupled with the dire obligatory warning of some doom and gloom event that the child "may" later experience.

Therefore, when I read things like you should not implant your child because they won't be able to scuba dive deeper then 100 yards or become an astronaut or play sports, I still sit there and roll my eyes and shake my head. I know the ci is not for everyone and that not everyone will be able to benefit from it but I will not stand by and let misinformation go by unchallenged because it is too important to the parent out there who may be reading it and trying to make the ci decision for their child.

+1

 

[kayla123]

Shel,

I do not think that "defensive" is the right word. I think what you are experiencing are parents who are willing to stand up and passionately correct the misinformation and myths constantly being spread about cis. I also think that the issue of cis for children strikes right at the heart of the parent/child relationship and naturally evokes a response.

If you can name any other area where people more frequently comment upon how parents should raise their children and question the decisions parents make for their children then cis, please let me know for I doubt there are many others.

Thank you for clearing that up Rick! You are right on target

 

[shel90]

Samantha, Thank you for sharing your experience. All I would say is to expose your child to deaf culture and ASL so that he is able to communicate with others that are deaf. Most likely he will have deaf friends and like you said, he is deaf regardless. Plus you never know if/when the CI fails, you can always fall back on sign language to communicate. Just my opinion for what it's worth.

 

[ashleysmommy]

Wow! Very well put rick48.

 

[rockdrummer]

Shel,

I do not think that "defensive" is the right word. I think what you are experiencing are parents who are willing to stand up and passionately correct the misinformation and myths constantly being spread about cis. I also think that the issue of cis for children strikes right at the heart of the parent/child relationship and naturally evokes a response.

If you can name any other area where people more frequently comment upon how parents should raise their children and question the decisions parents make for their children then cis, please let me know for I doubt there are many others.

Personally, we made our ci decision in 1989 and were called child abusers, Nazis, been told that we neither love our child, understand our child, nor accept her for who she is. We have been told that we are trying to turn her into something she is not, and of course there are those who advocated that deaf children, like our daughter, should not be raised by hearing parents at all but placed in residential schools for the deaf to be raised by "Deaf Role Models". Heck, I even sat across from the former head of the NAD on TV who stated it was wrong for us to have implanted our daughter.

With what other issue does this occur? Where else do you have people routinely tell parents that the decision they made for their child is wrong and how they are raising their child is incorrect?

Throughout the years I have met hundreds of parents who have either implanted their children or considered the implant for their child and universally they put a lot of time and effort into that decision and it was not one that they reached without a lot of careful consideration. In general, they were good and decent parents trying to do what they believe is best for their child. They know their children better then anyone else. That is why, when you stop and think about it, it is rare that you have a ci parent comment negatively upon a parent's decision not to implant their child or state that the parent should have implanted the child. However, some of us will react passionately and strongly to those who attack the implant or question the right of a parent to make the decision for their child.

True, a lot has changed in the last 18 years but there is still a long way to go. We still have those who cannot accept the fact that there are parents of successful ci children who chose a path that differs from the one they chose for their child or for themselves. Thus, even when they begrudgingly acknowledge the ci's benefits for children it is often coupled with the dire obligatory warning of some doom and gloom event that the child "may" later experience.

Therefore, when I read things like you should not implant your child because they won't be able to scuba dive deeper then 100 yards or become an astronaut or play sports, I still sit there and roll my eyes and shake my head. I know the ci is not for everyone and that not everyone will be able to benefit from it but I will not stand by and let misinformation go by unchallenged because it is too important to the parent out there who may be reading it and trying to make the ci decision for their child.

You have hit the nail on the head. It's exactly why I started this thread. I got sick and tired of others telling me that I implanted my child for selfish reasons, because I didn't accept my child for who he is and that I did it to take the easy way out. Nothing could be further from the truth and I think that I speak for most parents that have gone the CI route. The bit about parental decisions is a good point and I cant think of any other areas that are surrounded by so much contravorsy. Personally I think it relates to the cultural vs. pathological view of deafness. I often wonder if the same views applied when they first came out with hearing aids.

 

[rockdrummer]

Yep, it seems that we cannot express an opinion that contains both pro and con without the negative becoming the focus, and then we are labeled and treated as dissenters. I think that mostly happens when someone is still relatively insecure in their own opinions, and therefore mistakes open discussion for criticism.

I completly agree that both sides should be openly discussed so that a balance of information is available to those that are considering the decision. It's not all a bed of roses but on the other hand it's not all doom and gloom either. Balance is key.

 

[shel90]

I don't know if there was as much constroversy with HAs like there is with CIs...I believe DD said that there was. Anyways, I think the reason for so much controversy is that getting a CI involves invasive surgery while HAs do not. That's my guess..

 

[rockdrummer]

I don't know if there was as much constroversy with HAs like there is with CIs...I believe DD said that there was. Anyways, I think the reason for so much controversy is that getting a CI involves invasive surgery while HAs do not. That's my guess..

From what I have gathered thus far, it seems there are a couple of controversies over CI's. One is regarding implanting children and the other is preservation of D/deaf culture. I would have to imagine HA's were controversial when they first came out for the the latter reason.

Invasive surgury always has it's risks no matter what it's for. Also folks have echoed over and over that for adults it's not a problem. So it's not just the issue of invasive surgury but more an issue of invasive surgury on a child. But if the child is old enough and decides for themselves, then it's ok. At least that is the jist of what I am seeing in this and other threads.

 

[momtotoes]

This whole subject seems so simple until I start reading all the differing viewpoints.

It makes it tough.



Do I just go with what I feel is right?

Or do I try to look into all the differing opinions - preconceived notions and all.

Sometimes I worry that I have not been analyzing all of this enough.


Did we make the decision too quickly?


10, 20, 30 years from now, will she thank us for doing this *for* her?

.....Or curse us for doing this *to* her?


Should we be doing more to make sure Erin has full exposure to the Deaf community to make sure all her options are open?

.....Or should we do more to make sure she has assimilated with her mainstream peers?


Should we celebrate her developing verbal language skills?

.....Or worry what *might* happen should her CI eventually fail her?


Should we start working on her ASL development?

.....Or spend more time on AVT?


Should we acknowledge her differences?

.....Or minimize them?

.....Or celebrate them?


I have spent so many nights awake worrying over these questions and so many more. And I suspect this will probably happen for the rest of my life. No differently than any parent of any child - hearing or otherwise.

My biggest hope is to keep Erin from the same fate.


Ultimately, I want her to be happy with who she is.

No matter *who* she decides *she* happens to be.

 

[shel90]

This whole subject seems so simple until I start reading all the differing viewpoints.

It makes it tough.



Do I just go with what I feel is right?

Or do I try to look into all the differing opinions - preconceived notions and all.

Sometimes I worry that I have not been analyzing all of this enough.


Did we make the decision too quickly?


10, 20, 30 years from now, will she thank us for doing this *for* her?

.....Or curse us for doing this *to* her?


Should we be doing more to make sure Erin has full exposure to the Deaf community to make sure all her options are open?

.....Or should we do more to make sure she has assimilated with her mainstream peers?


Should we celebrate her developing verbal language skills?

.....Or worry what *might* happen should her CI eventually fail her?


Should we start working on her ASL development?

.....Or spend more time on AVT?Should we acknowledge her differences?

.....Or minimize them?

.....Or celebrate them?


I have spent so many night awakes worrying over these questions and so many more. And I suspect this will probably happen for the rest of my life.

My biggest hope is to keep Erin from the same fate.


Ultimately, I want her to be happy with who she is.

No matter *who* she decides *she* happens to be.

I dont see why can people both? Is it hard to do both? I am just curious so pls dont take it as an insult. I am just curious from a parent's point of view about doing both? Like my children are exposed to both the hearing and deaf worlds. Help me to understand..thanks

 

[rockdrummer]

This whole subject seems so simple until I start reading all the differing viewpoints.
It makes it tough.
Do I just go with what I feel is right?

Going with your gut feeling is not always a bad thing. Just don't make any knee-jerk decisions. Going with what you feel is right after considering all of the implications is all that anyone can ever expect from you.

Or do I try to look into all the differing opinions - preconceived notions and all. Sometimes I worry that I have not been analyzing all of this enough.

The fact that you are here tells me that you are looking into differing opinions etc. Only you know when you are satisfied it's enough. I personally know there is much to analyze. Far more than I ever imagined.

Did we make the decision too quickly?

There is a window of time to get started one way or the other. From my understanding that window has to do with a childs ability to eaisly aquire language. So deciding one way or the other early on is important.

10, 20, 30 years from now, will she thank us for doing this *for* her? .....Or curse us for doing this *to* her?

Nobody has a crystal ball. All you can do is be supportive and feel confident that you made your choices based on educating yourself on the issues.

Should we be doing more to make sure Erin has full exposure to the Deaf community to make sure all her options are open?.....Or should we do more to make sure she has assimilated with her mainstream peers?

Look into the Bilingual, Bicultural approach. From my understanding it teaches ASL and English which will help assimilate your child in both cultures. Anyone please correct me if I am wrong.

Should we celebrate her developing verbal language skills?
.....Or worry what *might* happen should her CI eventually fail her?

You should celebrate each accomplishment that you consider a milestone and if you take the bi bi approach you will be prepared to handle a CI failure.

Should we acknowledge her differences?
.....Or minimize them?
.....Or celebrate them?

In my opinion you should accept your child for who they are no matter what and not minimize anything but rather celebrate everything about them.

I have spent so many nights awake worrying over these questions and so many more. And I suspect this will probably happen for the rest of my life. No differently than any parent of any child - hearing or otherwise.

You are right. At the end of the day we are all parents trying to do what we feel is best for our children. We as parents worry about many things. Consider this; somebody once told me that statistically over 90% of the things we worry about never come to pass. Sleep easy.

 

[orysia60]

I try to explain you that hopeful, you must to understand that how the deaf community is wonderful. Iam CI that is helping to hear to understand the sound also it is wonderful to learn the hearing world. It is worth for my job to communciate with the staff and manager. Iam still speaking very well and ASL too. I am still deaf too that no matter who Iam deaf and hearing as both. I really love ASL because it is beautiful also support the deaf community but support the hearing community that sharing of them. They are respect for all. It is good experience for ASL and Hearing world. I want that it is balance for both. I feel that the deaf community is lonely but keep to asl to them. They are very comfortable with all sharing it is supportive. I suggest that all of children should be to learn ASL and speaking for both of them. It is worthy to more experience. I am sure that the deaf community accept that is way for both because the deaf cannot speak, it is hard for them but they are very smart to learn ASL quickly. It is help alot.
Hopeful, All deaf community that the children mainstream encourage to learn ASL and the speech therapy. Whatever the parent choose! But I feel that it is best for both of them. It is more experience for enjoyment.
Thank you for understand.
Orysia

 

[R2D2]

This whole subject seems so simple until I start reading all the differing viewpoints.

It makes it tough.



Do I just go with what I feel is right?

Or do I try to look into all the differing opinions - preconceived notions and all.

Sometimes I worry that I have not been analyzing all of this enough.


Did we make the decision too quickly?


10, 20, 30 years from now, will she thank us for doing this *for* her?

.....Or curse us for doing this *to* her?


Should we be doing more to make sure Erin has full exposure to the Deaf community to make sure all her options are open?

.....Or should we do more to make sure she has assimilated with her mainstream peers?


Should we celebrate her developing verbal language skills?

.....Or worry what *might* happen should her CI eventually fail her?


Should we start working on her ASL development?

.....Or spend more time on AVT?


Should we acknowledge her differences?

.....Or minimize them?

.....Or celebrate them?


I have spent so many nights awake worrying over these questions and so many more. And I suspect this will probably happen for the rest of my life. No differently than any parent of any child - hearing or otherwise.

My biggest hope is to keep Erin from the same fate.


Ultimately, I want her to be happy with who she is.

No matter *who* she decides *she* happens to be.

Nicely put - it shows that such a decision is never cut and dried but is shrouded with worry and uncertainty. I think at the end of the day all you can do is to assume nothing about how Erin is going to feel as adult (because we deaf people are all different, just like any other group, some are angry but others are just getting on with it) and provide her with choices.

It seems silly to make decisions that will affect Erin for the rest of her life based on how *some* vocal people in the community feel right now. Communities and attitudes change over time. For example hearing aids were strongly opposed back in the 1940s but are accepted now. CIs in adults were very strongly opposed when they first came out but are now accepted by most mainstream deaf community members. Maybe implanted children will one day be accepted also?

Many of Erin's deaf peers by the time she reaches teenage years will possess some degree of oral skills, even if they also sign, due to the fact that so many profoundly deaf children are now being implanted - I would personally want my child to be similar to a lot of her deaf peers, able to communicate both by sign if they want to but also orally.