Help me decide. :)

D

DeafKattMom

New Member
Joined
Jul 5, 2005
Messages
120
Reaction score
0
I have three deaf children. All severe to profound, bilateral hearing loss.
a nine yr old, three yr old and two yr old.

Im being presented with the idea of putting cochlear implants in them.

It scares me to death, to make this descision for my children. I feel strongly about raising them deaf, they are all fluent in sign language(mixture of ASL and signed english). Im on my way to becoming a cert. interpretor...

But now Im kind of up in the air... The school district representatives are pushing the implant, and saying the kids could be mainstreamed, they would hear, it will be great.

But I dont want to know I went out of my way to CI my kids if it dosent end up working OR taking my kids completely out of a deaf/signing environment if it works out really well.

I want to know who is deaf and a child of a hearing parent. How do you feel about CI's, if your parents got you one, or if they chose not to, how do you feel about that?

Im so worried that with either descision Ill make the wrong one and its driving me batty.

Thanks,
katt
 
The school district representatives are not allow to push their demands on you. You're the parents of your own children, You're the only one that can make that decision. But, can I suggest for you to continuing with sign language with your children if you do considering the future of cochlear implant for your children. :)
 
DeafKattMom said:
I have three deaf children. All severe to profound, bilateral hearing loss.
a nine yr old, three yr old and two yr old.

Im being presented with the idea of putting cochlear implants in them.

It scares me to death, to make this descision for my children. I feel strongly about raising them deaf, they are all fluent in sign language(mixture of ASL and signed english). Im on my way to becoming a cert. interpretor...

But now Im kind of up in the air... The school district representatives are pushing the implant, and saying the kids could be mainstreamed, they would hear, it will be great.

But I dont want to know I went out of my way to CI my kids if it dosent end up working OR taking my kids completely out of a deaf/signing environment if it works out really well.

I want to know who is deaf and a child of a hearing parent. How do you feel about CI's, if your parents got you one, or if they chose not to, how do you feel about that?

Im so worried that with either descision Ill make the wrong one and its driving me batty.

Thanks,
katt
Click to expand...

You have obviously made the correct decisions for your children to date. They are fluent in ASL.

School administration has no business pushing you to implant your children. They have neither the expertise in these matters, nor are they legally permitted to determine your child's mode of communcation. This makes me very angry. The school district is obviously functioning on the misconception that the CI will allow your children to be mainstreamed with minimal supprt services, thus saving the school district money. I find this to be objectionable to put it mildly. Tell the school district that the decision to implant or not implant is yours alone, and if and when you make that decision, you will let them know. The next time they bring it up, ask them what university they received their medical or audiological degree from. Meanwhile, report this district to your state board of education.

I can share with you my experience. I decided to raise my son in a bilingual/bicultural atmosphere, and he has been educated, for the most part, in a deaf school. We had some very unsatisfactory experiences with the mainstream placement. My son is now 21, attends a hearing college, and is quite successful without an implant. As an adult, he sees absolutely no need to have one as he does not feel his quality of life would, in any way, be improved.

Do not let the school system intimidate you. You are your child's best advocate.
 
Whoa. The school district has no rights to push Deaf kids into getting implants.. for what? It is not their decision making. You are a parent of three Deaf kids, so therefore, it is mainly your decision whether if your kids getting implants or not. This is so disgusting that school is trying to encourage you to get your kids implanted. They have no experiences in Deaf Culture and language. You can tell them that you make a wise decision. If school won't accept that, then tell them to fuck off.
 
Oddball said:
Whoa. The school district has no rights to push Deaf kids into getting implants.. for what? It is not their decision making. You are a parent of three Deaf kids, so therefore, it is mainly your decision whether if your kids getting implants or not. This is so disgusting that school is trying to encourage you to get your kids implanted. They have no experiences in Deaf Culture and language. You can tell them that you make a wise decision. If school won't accept that, then tell them to fuck off.
Click to expand...

:lol: yeah i agree! :eek:
 
Can u sue the school district or bring a due process for pressuring u? It is not their place to do that.

A child with a CI can do both ASL and spoken English. It doesnt have to be one or the other. Besides if u implant them, it takes intensive training to get them to learn how to use them. I applaud u for exposing your children to ASL. That is very critical to their language development.

Welcome to AD!
 
jillio said:
You have obviously made the correct decisions for your children to date. They are fluent in ASL.

School administration has no business pushing you to implant your children. They have neither the expertise in these matters, nor are they legally permitted to determine your child's mode of communcation. This makes me very angry. The school district is obviously functioning on the misconception that the CI will allow your children to be mainstreamed with minimal supprt services, thus saving the school district money. I find this to be objectionable to put it mildly. Tell the school district that the decision to implant or not implant is yours alone, and if and when you make that decision, you will let them know. The next time they bring it up, ask them what university they received their medical or audiological degree from. Meanwhile, report this district to your state board of education.

I can share with you my experience. I decided to raise my son in a bilingual/bicultural atmosphere, and he has been educated, for the most part, in a deaf school. We had some very unsatisfactory experiences with the mainstream placement. My son is now 21, attends a hearing college, and is quite successful without an implant. As an adult, he sees absolutely no need to have one as he does not feel his quality of life would, in any way, be improved.

Do not let the school system intimidate you. You are your child's best advocate.
Click to expand...

More evidence of the so-called "experts" pressuring parents about the CI and the misconceptions about the CI making a deaf child hearing. Wow!
 
Last edited:
DeafKattMom said:
I have three deaf children. All severe to profound, bilateral hearing loss.
a nine yr old, three yr old and two yr old.
...
saying the kids could be mainstreamed, they would hear, it will be great.
Click to expand...

Hi there! Its a tough decision, with everyone having such strong opinions, isnt it?

Before you can make a decision like this, I believe you need to decide what outcome would make the action worthwhile. Then you can see how realistic that outcome is, and you have a better basis on which to make the decision.

Firstly - what would "success" mean for you? What outcome would you want to be relatively certain of to go ahead with this action? To be mainstreamed and "hear" (I am assuming they mean like a hearing person).

Well, mainstreaming is just a location - not an education.

And to get an idea of the "hearing" that CI kids have, check out this link at the University of Texas. At the bottom of the page is a scattergraph showing the hearing results of kids implanted early (which I believe means before 2 years, but check it) and late.

Does that mean you shouldn't do it? Well, if you are only doing it to mainstream your kids, I wouldn't bother. Mainstreaming doesn't ensure anything that you can't do yourself at home.

It also depends on your kids - do they love hearing, or not care? Are they self-assured enough to have a CI in the presence of someone against it, or would that upset them? Your 9 year old is probably old enough to be involved in any discussion about implantation, and also probably old enough to commit to speech therapy if that's what they really are determined to do.

I wish you luck and peace with your decision.

Cate
 
I can recommend a book for you that might be helpful: The Parents' Guide to Cochlear Implants by Patrica M. Chute and Mary Ellen Nevins. It is a little biased but the authors strived to be objective. (my personal opinion here). That's one book you can start with. Do your research fully by using all the sources you can get your hands on and try to understand both sides before making your decision. If you can, talk with people in the Deaf community, especially ones who have CIs themselves. Regardless what you decide, it should to be YOUR decision. You know your kids better than anyone...and you know what they need best.
 
Bascially, go with your gut feeling.

Also talk to your kids about the idea and see what they think. Probably they will object because, by the sound of it, they're happy right where they are.
 
What you really need to do is research Cochlear Implants and be totally informed about how they are done and what benefits your children will get from them if any. The school district can't make you do anything and shouldn't be allowed to pressure you. From what I know a bout CI's they don't give a person true hearing. From what I understand, they will hear sounds that will protect them, like cars and fire alarms etc. As far as speech goes, they won't improve your childs speech without very extensive speech therapy especially if your children were born deaf and never heard speech before. It seems the School District hasn't done their homework. Your children won't be able to participate in any contact sports as well. If they have heard speech before the CI can be beneficial which is usually the case for older people or accident victims. I'm not trying to make the decision for you, just giving you some facts that I know about. Again, get out on line and research, ask doctors questions, seek out people that have had their children get CI's and if they did benefit. Good Luck and you have time don't be pressured.

I am a hearing person, and from what I know I wouldn't have it done to my children.
 
DeafKattMom said:
I have three deaf children. All severe to profound, bilateral hearing loss.
a nine yr old, three yr old and two yr old.

Im being presented with the idea of putting cochlear implants in them.

It scares me to death, to make this descision for my children. I feel strongly about raising them deaf, they are all fluent in sign language(mixture of ASL and signed english). Im on my way to becoming a cert. interpretor...

But now Im kind of up in the air... The school district representatives are pushing the implant, and saying the kids could be mainstreamed, they would hear, it will be great.

But I dont want to know I went out of my way to CI my kids if it dosent end up working OR taking my kids completely out of a deaf/signing environment if it works out really well.

I want to know who is deaf and a child of a hearing parent. How do you feel about CI's, if your parents got you one, or if they chose not to, how do you feel about that?

Im so worried that with either descision Ill make the wrong one and its driving me batty.

Thanks,
katt
Click to expand...

All the nasty boundries that the school breached when trying to push CI on you aside, they were also hugely incorrect. Your children wont wake up the day after surgery understanding very single thing- it takes time, extensive speech therapy, and even then some people do well and others don't.

It may help your kids, and it might not. But it's all the same a huge choice with significant medical risks that shouldn't be influenced by a school district.

Are your children honestly happy as they are? If you can answer yes, my own opinion would be..

Don't fix children that aren't broken.
 
Aleser said:
All the nasty boundries that the school breached when trying to push CI on you aside, they were also hugely incorrect. Your children wont wake up the day after surgery understanding very single thing- it takes time, extensive speech therapy, and even then some people do well and others don't.

It may help your kids, and it might not. But it's all the same a huge choice with significant medical risks that shouldn't be influenced by a school district.

Are your children honestly happy as they are? If you can answer yes, my own opinion would be..

Don't fix children that aren't broken.
Click to expand...

Very well said, Aleser!:cheers:
 
Re: Help me make a decision

Katt,

I agree with others here who say the school district has no business pushing cochlear implants on your family. The same goes for any professional whom you come in contact with, doctors, audiologists, therapists, etc. Cochlear implants are a very personal decision, one that is not necessarily "right" for every person. Having said that, I do think it is something to be considered.

I am a deaf mother of a deaf daughter who is now 12. We both have bilateral cochlear implants after having worn hearing aids for years. We have been very successful with them and are able to hear and understand speech without lipreading, talk easily on the phone, understand many public address announcements and are able to hear noises from distances (sirens, people calling us, etc.) These are not things that happen magically with cochlear implants. It takes time, perserverence and auditory rehabilitation in order to achieve great results. In a word, cochlear implants are a commitment.

When it comes to children, the younger they are implanted and learn to use their CIs, the better the outcomes are in general. This does not mean that your 9 year old will not benefit. But it does mean that he/she may have to work harder than the other two children.

Getting cochlear implants does not mean that your children have to stop signing or be immersed in Deaf Culture. Those are really separate, individual choices. They will find it easier to learn to speak orally though and should have therapy to help them do so. Getting a cochlear implant (or two) and not giving the child the tools to help them use it effectively, learning to listen and speak, just doesn't make sense. It is not a "miracle" device that you pop in and suddenly comprehension soars. It takes time and practice and perserverence as I mentioned above.

In order to make any decision about this, I recommend that you research it by gathering facts, not just opinions. All of the FDA approved manufacturers put out marketing materials (dvds, books, etc.) that you can get for free. While they are truthful, remember that they are marketing materials and not everyone achieves the same results. Here are the links to their websites where you can get free info:

MED-EL
Advanced Bionics
Cochlear Americas

I recently posted on my blog about stories from Deaf/deaf people who have gotten cochlear implants. You can read it online here: No Cochlear Implant Stories? Think Again!

Consider having your children evaluated for cochlear implants at a reputable cochlear implant center in your state. Most large hospitals have them and you can search the manufacturers' websites for the contact info. Write down and bring all of your questions to the appointment. Tell them you want to connect with other parents with children of similar ages and hearing histories who have already undergone the procedure. Find out if they have any upcoming events with parents and/or children speaking on panels. If not, give the center your phone number or email address and tell them to have two parents contact you.

Join cochlear implant groups online. Read their discussions and ask questions of the people there. You will probably be able to find other parents with similar backgrounds. Contact me at info@hearingexchange.com to find out which online groups are my favorite. You can also do a search for them on Yahoo! Groups - Join or create groups, clubs, forums & communities!.

Please understand, this post is not to convince you to implant your children. As I said, I firmly believe that it is an individual choice for parents. I am offering resources for you to use to make an educated choice.

Feel free to contact me at anytime.

Good luck with your decision,

Paula Rosenthal
HearingExchange
Blog and Resources for People with Hearing Loss since 2000
 
This is a really good post from Paula Rosenthal. It is very professional and nonjudgmental. I like the suggestion of contacting other parents and joining a support group. I appreciate the comment about the marketing materials. And she's right...there's more to CI than just implanting it - there's a lot that has to be done afterwards - learning how to use it and practicing using it for auditory comprehension and training. That's why it is so important you do the research and talk with people - deaf people, deaf parents, hearing parents, doctors, etc. as well. I wish you and your child the very best.
 


If it was me, I would give my child CI, because it was the greatest thing ever happened to me and I would want my child to also experence it. I also would teach my child Deaf Culture, something that my parents didn't do and is not too happy about that.

My husband on other side wouldn't give our child CI if our child is deaf, because he doesn't want to take the risk of Surgrey, he doesn't like the idea of them cutting so close to the brain and he feels that it's unnessary surgery...as our child can live on being deaf, like it's not gonna harm him/her's life.

So we're both in disagreement about that...but we'll see what happens if we do have a deaf child...but right this moment, we have hearing child.

 
You alone have the decision to implant or not. If you do, don't forget the vaccination two weeks before the surgery to prevent the certain kind of meningitis. As for me, I personally don't want it.
 
Aleser said:
All the nasty boundries that the school breached when trying to push CI on you aside, they were also hugely incorrect. Your children wont wake up the day after surgery understanding very single thing- it takes time, extensive speech therapy, and even then some people do well and others don't.

It may help your kids, and it might not. But it's all the same a huge choice with significant medical risks that shouldn't be influenced by a school district.

Are your children honestly happy as they are? If you can answer yes, my own opinion would be..

Don't fix children that aren't broken.
Click to expand...
:werd:

Also, make sure that it's what your child wants... not what other people want.

Some children do what other people want. If they see a bunch of kids getting CI, they may want CI too. Make sure they are fully aware of what they are getting into.

If the kid says, "But my friends got CI... why can't I?" That's not a good excuse.
 
Back
Top