What to do?

Ellie

Ellie

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My son's doctor is really trying to get us to look into cochlear implants for my son. I've done some reading on them, but not really sure what to do. I think the idea of the implants is good, but then again i know that some people are against them. I kind of feel like a parent that wants to "fix" my son, even though I know there's really nothing to fix, he's not broke. I also want what's best for him, and in a way I think of the implant as a way to help. What do you think?
 
Hi Ellie!
Why may I ask is your son's doctor pushing the CI? I am OK with the CI in cases where hearing aids do not give too much assistance, but I do think that some people (both parents and professionals) are buying into the hype a little too much. It sounds like he does get some benifit from hearing aids, but the doctor just wants the volumne turned up (so's to speak) Ask your son's audilogist if perhaps a body worn aid or high frequncy transponder aids might do the same job. Investigate ALL possibilties! The CI should be the last resort option....
 
Ellie: Yes, this a tough decision to make!

I suggest you talk to parents whose children were implanted to find out how they are benefitting. If your CI center has a candidate outreach program, perhaps you could meet parents that way. There are also several e-mail listservs designed for parents who are considering a CI for their child or whose children have already been implanted. One of them is called cicircle. To subscribe, send a blank message to:

cicircle-subscribe@yahoogroups.com

That being said, I agree with deafdyke that you should proceed carefully and find out as much as you can about other options first. Some doctors are too quick to implant children without evaluating whether or not they can benefit from stronger hearing aids (meaning body worn or transpositional aids) *and* assistive listening devices/FM systems. Assistive listening devices and FM sytems are designed to block out background noise. They bring the sound of a person's voice into a child's (or adult's) hearing aids as if he/she were speaking directly into their ear. That may be another option you may want to consider.

Was your child evaluated by a qualified CI center? If not, I would suggest that you contact one in your area (I would be happy to find the contact information for you) because not all audiologists or ENTs are familiar with the candidacy requirements for a CI. (My CI audiologist told me she has seen people with mild hearing loss come in to be evaluated for a CI.)

Knowledge is power, so try to educate yourself as much as possible on all of the options available. It can be overwhelming, but is well worth it in the long run! <smile>

Good luck! :) Hope this helps!
 
What is your intuition telling you?
I think deep down we know the right choice.
I think you are open for CI.
However I agree with previous posters.

It is best to check if CI is absolutely neccessary, if other hearing aids and assistive devices wouldn't suffice.

And then , speaking as HOH raised as "hearie", I urge you to not abandon the deaf culture and sign laguage even if you get an implant (for son).


Fuzzy
 
Fuzzy brought up a very good point about continuing to be a part of deaf culture. Some of my deaf friends thought I'd ignore them completely after getting my CI. That hasn't been the case. In fact, I've maintained my signing skills and participate in the deaf and deafblind communities on a regular basis. I now have the best of both worlds and more importantly, haven't lost my identity as a deafblind person. :)
 
I'm surprised that the doctor trying to "push" you to get your child CI.

Well, it's important is follow your own heart either you really want to have your child CI right now or wait until your child to have his/her choice.
 
From another hearing mom... From my experience... doctors, teachers, and anyone else who is hearing, who works with deaf children, will reccomend, then advocate for them and want them for your child. You will hear impressive statistics, reasons, pleas... oh, you name it. The most important thing to do is to think about your child's needs and your family's needs in general.

Weigh out your pros and cons and make a descision from there.

I'm surprised that the doctor trying to "push" you to get your child CI.
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Dont be. If the parent is hearing, doctors automatically assume that we want our kids to hear... most parents do... you will be pushed about it until your child is well into teenage or adulthood.

Ultimately, its what you feel is best for your child, which, I know, dosent make the descision any easier... I think doing more research on the implant, and the deaf culture, would help you make a descision.Talk to other parents about thier experiences(Im here to share mine, although mine is not for CI or aides, but it is a perspective) and go from there.

GL!! Always here to listen,
katt.
 
DeafKattMom, I respect your decision what you think the best for your child.

All what I do is follow my heart and beleive that it's child's choice like what I said in other threads.

Remember that everyone have their own decision what they do with their child. All what I give them honest answer what I have my opinion when they ask me for my opinion. I do not against if everyone have different opinion than me. Remember is RESPECT everyone's choice.
 
We are getting a CT scan of John (my son)'s ears on Wed. so that they can find out what is really going on with his ears and if an implant will help or not. His aids don't seem to help much. He has ST. once every other week which will soon be going to once a week until he's 3. His Theopiest doesn't really talk about John not responding to anything with his aids and hasn't been much help. Also Wed. we are getting yet another ABR to see if his hearing has changed any since the last one, which was last October. His ENT doctor has always pushed towards CIs, but I don't care if my son can hear, I just want him happy and healthy. I know there are things that we'll face that might seem to much, but others have done it before us and there are people that will do it after us. At first my husband and I were thinking waiting until John gets older, make the desison on his own, but if he wants the CI it will be harder on him later rather than now to learn to use it. My heart tells me that if it's a possiblity we should go for it. Thank you all for your support. Still thinking about it though, any other advice is welcomed.

Ellie

Also I am planing on my son growing up what I read was called Bi-Bi. I want him to know about and live in both cultures. I don't want to limit him to one or the other, I don't think it would be right to him.
 
decisions...

hello ellie,


i am a twenty year old female who was diagnosed with profound, prelingual sensorineural deafness six months after birth (120db in both ears) with unknown cause(s) until this past january when it was discovered that i might be deaf due to the connexin-26 genetic factor. when i was approximately nine months old, my parents decided to raise me using the SEE (signing exact english) system along with total communication at school. as a result, by the time i entered the third grade (8 y/o), i was tested to be reading at the post-secondary level.


at the age of five, i begged my parents to get me a cochlear implant -- my mother was especially concerned with the strong reaction to CI's from the deaf community, but i did not care. i wanted to hear.


how is it possible for someone with no hearing at all to hear through amplifying devices such as hearing aids? in april of 1991, i was implanted with a nucleus-22, and currently wear an esprit 3G BTE. for the first two years i had my cochlear implant (ages 6-8), i wore it every day - my speech improved drastically, my environ-awareness was sharper, and i was beginning to be able to hear words instead of just sounds that i was able to contextually make sense of. then i just stopped wearing it. i was too actively involved in sports to wear my external processor - the BTE's did not come out until i was in high school, and i could not afford one until last summer!


... however, i never, ever once regretted that decision i made completely by myself at five years old. i love being able to hear whenever i feel like it now that i have my BTE. even though i do not hear words, i know that with rehabilitation i plan on starting again this fall, i probably could one day - but, that's not why i love my implant. i like it because i really hear things. i can hear the water running in the coffee machine in the mornings, my car alerting me that i've left the lights on when i open the door, and when something falls out of my car, pocket, or bag onto the ground -- those important, little things that make me feel more secure to hear as a young, deaf woman that other hard of hearing people, or even those who are diagnosed with "profound hearing loss" have the benefit of being able to hear with their hearing aids.


i am now fluent in ASL, and i do not feel that i missed out on the experience of being a part of the deaf community nor the culture immersion "despite" my cochlear implant and SEE-sign background. i am a firm believer in total communication, and truly feel strongly about every deaf person, even those who are implanted as children and their families.... learning how to communicate in sign language. it is a must!! every safety-net needs to be secured in place...


if your son is able to hear everything with hearing aids, even if he can only do that with the strongest kind on the market, you should go with that option. i do agree that cochlear implant surgery should only be considered as a last resort decision - after all, it is major surgery! if your son is not able to receive "FULL" benefit from hearing aids, then i definitely agree that it would be good to take a serious look at a cochlear implant for him.


my mother is now the senior sign language interpreter for the local school district and actively involved with the interpreting advisory board for the state of california. if you would like to talk with her about what you are going through, please e-mail me, and i will give you her name and phone number. she would be more than happy to give you some advice based on her own experience...


i just feel strongly about the imperative need for communication; as long as your son is not constrained or limited in his input of language, whether it be in signed english or ASL - in the form of a strong familial bond, books, advocacy from your part for interpreters that actually sign the content and don't transliterate, his self-expression will be more natural... and from himself! smile!


here are some links that i think you might find beneficial:


<b>cochlear implants/ear clinics:</b>

http://www.cochlear.com
http://www.houseearclinic.com
http://www.hei.org
http://www.bionicear.com
http://www.medel.com
---

<b>my deaf community/resources:</b>

http://www.gallaudet.edu
http://www.rit.edu/NTID
http://ncod.csun.edu
http://www.aslinfo.com
http://www.handspeak.com
http://www.modernsignspress.com


:hug: - sincerely,

T
 
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I like this idea of being 5 years old and decide to go ahead, rather than forcing child without consulting child's feeling first.

I would never want CI in the first place. I never like HA because I really never understood the sound. It seems like "two colors" that is all. So, I don't see why I should have CI anyway. I don't speak at all, so it is not worth anyway.
I am just against parents who force decision on child because parents don't own the child. I don't own my son, and I will always talk with him before the decision is made.

Very interesting story!
 
His aids don't seem to help much.
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Define much....like does he hear enviromental noises? Does he seem to hear a percentage of speech? If he does hear a percentage of speech, I'd opt for trying a body worn aid or those high frequncy transponders. But if he doesn't really get all that much from aids, I think opting for the implant would be a wise choice!
He has ST. once every other week which will soon be going to once a week until he's 3. His Theopiest doesn't really talk about John not responding to anything with his aids and hasn't been much help.
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Is the speech therapist from a public early intervention program or are they from a school for the Deaf? Public EI therapists aren't very good at intervention for dhh kids....a lot of times public EI therapists only know a handful of Signs or whatever. Call the school for the Deaf in your area....You're in Kentucky right? I'll go and hunt down some links for you, inclulding some for oral programs...the problem with speech therapists from schools for the deaf, is that they tend to not be as skilled with oral methods as those who work at private oral programs.
That's AWESOME that you want your son to experiance BOTH worlds! YAY!!! WHOOHOOO!!!!!!!!!!!!!!!!!!
 
But then again, I think if the science can offer such a wonderful tool as CI that can only benefit a deaf person - why not?
You are not going to be any less deaf by merely having CI implanted.

But as a deaf person with CI you have better advantage in hearing world than non-CI.

That's all what is to it.


Fuzzy
 
But as a deaf person with CI you have better advantage in hearing world than non-CI.
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Or non-hearing aids.....remember there are a signifecent percentage of severe and profounders who function as hoh with aids!
 
diehardbiker65 -

i completely understand why other deaf people would never consider a cochlear implant. i know for a fact that if i did not get mine at the age of six, i would approach the idea today with more hesitation. the only things i can really understand with my cochlear implant are "top sounds" - if someone tells me on a walk that there are frogs croaking in the creek... then i will be able to hear them (seeing with my ears/mind it is there), but not prior to that knowledge.

it is just important that parents try their best to include their children, no matter how old they are, in each and every decision that involves them and their future.


----
ellie -

i know a wonderful family who moved to kentucky from southern california several years ago with a deaf son whom i have known since my earliest childhood -- the mother also became an interpreter after making the same decision my own did twenty years ago. they are the biggest advocates! you may also contact her; just be sure to e-mail me, and i will privately send you the names and numbers of people who would absolutely love to talk to you and hopefully put you at ease.
---


i'm deaf. Deaf. DEAF. :deaf:


CHAMP!!! haha. smile! my cochlear implant makes no difference in how i belong to the deaf community... and i am sure that the same goes for everyone with one who knows sign language.



best wishes,

T
 
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Liebling:-))) said:
DeafKattMom, I respect your decision what you think the best for your child.

All what I do is follow my heart and beleive that it's child's choice like what I said in other threads.

Remember that everyone have their own decision what they do with their child. All what I give them honest answer what I have my opinion when they ask me for my opinion. I do not against if everyone have different opinion than me. Remember is RESPECT everyone's choice.
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I respect everyone's descision. All I was saying was, you shouldnt be suprised that doctors are pushing the implant or aides on kids. Hearing families with deaf children get pressured into implanting thier children on a daily basis, how do I know this? I see it everyday. Im entitled to say that. I did not say anything about whats better for anyones family, infact I said:

Ultimately, its what you feel is best for your child, which, I know, dosent make the descision any easier... I think doing more research on the implant, and the deaf culture, would help you make a descision.Talk to other parents about thier experiences(Im here to share mine, although mine is not for CI or aides, but it is a perspective) and go from there.
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I also stated I would share my opinion as another mother experiencing the same thing for my children(I have two deaf children). But mine is not for CI... I told her this so she would know what to expect when talking to me about my opinion and reasons behind my descision. Im not here to sway or disrespect anyones opinion. I dont know where you got that from, and Im sorry you misinterpreted my post.

katt.
 
Ellie said:
At first my husband and I were thinking waiting until John gets older, make the desison on his own, but if he wants the CI it will be harder on him later rather than now to learn to use it.
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I was recently told that earlier is better, when making this descision. Because the brain is still moldable, and the CI is more likely to be effective at this age.
 
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