questions about CI for daughter

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wondermom

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Hello to all. :wave: My daughter is 9 years old and wants a CI. She says she wants to hear music, among other reasons. I have not pushed her on this in any way. We have been through the MRI, and other testing, and she is a candidate.

I am still not sure on what to do. I know that it may not work, ext.. And I do not know which is better; to try and it not benifit her, or to not try, and miss the chance.

I wanted to ask those of you who have had the procedure, whether you still wear it or not.

1. How old were you when you got it?

2. Are you happy with it?

3. Is it worth the risks in your opinion?

4. Would you not do it, if you had the chance to go back in time?

Any extra information is great!!
thanks!
 
My daughter is 9 years old and wants a CI. She says she wants to hear music, among other reasons. I have not pushed her on this in any way. We have been through the MRI, and other testing, and she is a candidate.
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Excellent!!!! It's good that it was her choice. Can she hear any with HA?
I have to say that I think that a lot of the hoh hearing levels seen with implanted kids may be due to either a) Infant memory. Like they were able to hear normally for a significent period of time as a baby, so they were MUCH better equipted to learn how to listen,compared to someone who has always been dhh.
or b) with the looser restrictions in place regarding who can get implanted, there are kids who have had experiance hearing with hearing aids, and so were better able to build on that foundation.
It's very hard to tell how well a child will respond to implantation. Some kids are functionally hoh with them, and other kids only get some sound or speech perception. The CI seems to be pretty much like a HA in that way. It's hard to tell how well a certain device will benifit someone.
 
DD. You're not cochlear implant user. Let someone with CI user will answer her the question.
 
I am so glad that this is your daughters decision. I agree with deafdyke in that a lot of what I have read up on puts most recipients into a mild loss category, not really restoring 100% hearing. Its hard to say how much she will get from the device but at least you are exploring all the options! Good luck!
 
She had more hearing when she was born than she does now. She spoke a few words up until around 2 1/2.

She wears HA, but does not benifit much from them, she can play "listening games" and tell me how many times I hit the table, but that is about it.
 
wondermom said:
Hello to all. :wave: My daughter is 9 years old and wants a CI. She says she wants to hear music, among other reasons. I have not pushed her on this in any way. We have been through the MRI, and other testing, and she is a candidate.

I am still not sure on what to do. I know that it may not work, ext.. And I do not know which is better; to try and it not benifit her, or to not try, and miss the chance.

I wanted to ask those of you who have had the procedure, whether you still wear it or not.

1. How old were you when you got it?

2. Are you happy with it?

3. Is it worth the risks in your opinion?

4. Would you not do it, if you had the chance to go back in time?

Any extra information is great!!
thanks!
Click to expand...

If you are looking for information from parents of ci kids as well, I would go to the ci circle and hearing exchange as there are many, many such parents on those forums.
Rick
 
Hi,

I recently was implanted with a Ci in May of 2008 so I've had it for about 3 months now. I was implanted at age 29 but wore hearing aids all my life prior being implanted. I too, was born with hearing as an infant and up until age 2 I was sick with a high fever which caused me to lose my hearing to a moderate to severe hearing loss and led to a sensornueral (spelling?) loss which I had a hard time picking up speech clearly. I mainstreamed in a private school with hearing children and read lips most of the time with the help of a hearing aid. However, looking back I realized I missed out on a lot since I've received a CI. It took me a year to make this decision to say "yes." I have 3 children of my own with good hearing, which led me to get a CI so I can be more involved in their social lives. I do not regret getting my CI because I am now hearing speech so clear and able to use the phone...it has only been 3 months and everyday sounds clearer. If your daughter feels left out in social events and can't understand words in music, or speak on the phone, then a CI may be an option. A CI has definitley open more doors for me. Best thing to do is really talk it over with your daughter and her audiologist. Best of luck. :)
 
Speaking for myself, I didn't get my CI until last year and I'm very happy with it. I can do things with my CI that I never could do with my hearing aid. I've certainly learned a lot while using my CI.

For example, the PA system in stores is apparently used to sell in store sales or to refer customers to the store web site. I used to think it was used only to call clerks to the boss or to announce things like in mainstream schools. Boy, I was wrong.

The downside is that I never thought I'd get sick of hearing back to school sales on the radio. :P Nor can I stand ringing phones as they're very jarring.

I'm 41 and will be 42 next month. I was born with a serve to profound loss and I was fitted with two hearing aids at 2 1/2 years old. I'm told my first word was mama at age 3. Only it came out as "ama".

While CIs can open doors for your daughter, the CI isn't a cure for deafness. I think you already know that though. :) I wish you and your daughter luck with the CI.
 
Only 3 and half weeks post activation at the age of 30, I was born Profoundly deaf, i had intense speech therapy all my school years and worn HA but they weren't much help. I had to go through red tape to get it, previous hospitals refused to refer me as they thought i wouldn't benifit from it because i was profoundly deaf too long and never had auditory memory of sounds.... well look where i am now thanks to lovely new hospital in different area!
I had CI implanted in july, switched on nearly 4 weeks ago, although as common there were alot of hitches at the start but now i am on the road to hearing, I am picking up alot of sounds i never heard before which is amazing also there's things I can't bear to listen like paper rustling which is so loud!! There will be love and hate relationship at the start but it will improve over time with patience. I had to keep them on every day and all my waking hours to get used to it even it sounded awfully high pitched, I have just began to understand voices with lipreading and hear things like my dog eating, my cat purring... :)

It's not a fix job, it requires alot of time and therapy afterwards especailly that your daughter is only 9.

Yesterday I didn't realise how deaf i was and that the HA weren't helping much! so I am glad for CI.

Research, ask questions, there's alot of blogs to read to give you/daughter idea what is it like to have CI.

Good luck.
 
My daughter was born hearing and now at age 5 is now severe-profoundly Deaf. She uses ASL as her primary language, is part of the Deaf community, and will be receiving a CI in the next month or so.
I would love to tell you why decided to get one, if you are interested.
 
faire_jour said:
My daughter was born hearing and now at age 5 is now severe-profoundly Deaf. She uses ASL as her primary language, is part of the Deaf community, and will be receiving a CI in the next month or so.
I would love to tell you why decided to get one, if you are interested.
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Yes i would love to know.

And thank you to everyone who has responded so far. I wanted to also mention that she has watched the surgery on video, start to finish, with all the bloody parts and all. So she knows exactly what will happen during surgery.

She also attends a deaf school, so she does not want it only for the fact of fitting in with peers. She has stated though, that Mom is hearing, sisters are hearing, Dad is hearing, so she could want to "fit In" at home more. Although we do all sign with her, and turn off our voices at the dinner time trying to sign everything. And she has only recently become interested in hearing over the last year; she wants me to turn the radio up in the car, she is trying to voice more, and she has wanted to wear her hearing aids at all time. (before it was a fight)
 
wondermom said:
Yes i would love to know.

And thank you to everyone who has responded so far. I wanted to also mention that she has watched the surgery on video, start to finish, with all the bloody parts and all. So she knows exactly what will happen during surgery.

She also attends a deaf school, so she does not want it only for the fact of fitting in with peers. She has stated though, that Mom is hearing, sisters are hearing, Dad is hearing, so she could want to "fit In" at home more. Although we do all sign with her, and turn off our voices at the dinner time trying to sign everything. And she has only recently become interested in hearing over the last year; she wants me to turn the radio up in the car, she is trying to voice more, and she has wanted to wear her hearing aids at all time. (before it was a fight)
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I applaud you and your family for making the effort to sign with your daughter, and also for placing her in an educational environment where she will not only recieve full access to the curriculum, but one in which her psycho-social development will be fostered. Also, I admire you for involving her in the CI decision. I only wish more parents followed your example.

I would ask, because it is obvious that you have done far more than many parents, if you have explored with her why she thinks it is necessary for her to "hear" to fit in with, or be more like, family members. It sounds as if she is a bright young lady, and has thought about this at length. But, at 9, she has probably not grasped the fact that hearing more with her CI (if that is the case), will not make her any less deaf. I would just encourage you to make sure that she understands that the procedure might be a benefit in increasing what she hears, but it will not make her the same as a hearing person. Kids at her age just have trouble because of their developmental stage, in understanding this basic concept.

You are doing a wonderful job, and I encourage you to keep involving her in the decisions, and to continue to sign and expose her to the deaf community. The result will be a capable and well adjusted adult.
 
As I said before, my daughter was born hearing, but she has lost it very quickly. She speaks a little, mostly just gibberish that she enjoys hearing. Her hearing aids have worked very well for her, until now. She shows me, in 5 year old ways, that she wants to be able to hear the best she can. We have always followed her lead, never forced her to do therapy when she didn't want to, or wear her aids if she didn't feel up to it. That being said, she has worn her aids all waking hours since 2 weeks after she got them. She loves to use her voice and to listen to toys or herself.
We decided to persue a CI because we see it as just another device. Yes, it is a big deal because there is surgery involved, but it didn't need to change our life. She will still be attending her school, playing with her Deaf friends, and living in the Deaf community. What changes is what we put on her ear in the morning. We are not taking away ASL. We are not becoming an "oral-only" family, we are just giving her another opportunity. Perhaps she will love the CI and take off with her speech/listening, or maybe she will get the same benefit as she does from her hearing aids now. Either way we are fine with it, because we know that eventually she would lose what she has now with her aids as her loss progresses.
I used to be anti-CI. Really. I thought that parents who implanted their children were lazy and wanted them to be hearing. Now I see that the technology is neutral. It is just a device that helps to transmit sound. It is whatever we use it for.

Miss Kat's Deaf journey
 
She had more hearing when she was born than she does now. She spoke a few words up until around 2 1/2.
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That is an execellent sign.
I really do think that a lot of the CI "functionally hoh" sucesses may be due to either some functional hearing present previously or infant auditory memory. I would totally go for it if the only thing that she can get with hearing aids is enviormental sound perception. The CI might boost her hearing to some speech perception. Be aware that the CI is very " all is possible but nothing is promised." Exactly like the hearing results with has. The HAs are "all is possible, but everyone gets different results"
Not everyone gets to mild or hoh listening levels with CI, just as many people don't with HA.
 
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