Ci not in use

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ange26s

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So I posted last month about my daughter that was implanted at 18 months. Shes turning 11 & we no longer make her wear her processor. She has always disliked it but we felt pressured to make her wear it, go to speech therapy, etc. She will be now starting shortly at a School for the Deaf, Its what she wants & what we support, so just curious of theres any others that were implanted, but stopped using their prosessor? As I tell people, we chose to have her implanted & said when she got older she could make her own choices to wear it or not. Im open to opinions & discussions on this. What have been your experiences with having a CI? She had a classmate that refused to sign & her speech was well developed & told her mom she " wanted to go to a normal school and class" so she left the total communication class. I have mixed emotions on that. But thats her choice and i wish her & her family all the best. My daughter is the opposite. She prefers to sign. But we have faced much criticism for not making her wear her processor. She even had a revision when she was 6 cuz she wasnt talking & they thought her inner processor wasnt working cuz she would scream & cry when it was turned on. I feel so guilty for putting her through all of that :( finally i said enough is enough & asked her what she wanted. Sorry for the long post lol, i feel so isolated on this. It seems like so many implanted kids take to it & are mainstreamed & my husband & I are made to feel bad about having her 8k processor in a basket on her dresser...
 
I don't have a CI so I cannot answer those questions.

In regards to the rest of your story, it seems to me you are making the choices that are best for your family. If she thrives in a signing environment then great. If she is happier without her CI then that sounds right too.

I suggest getting involved in the School for the Deaf family programs. Meet other parents and you will find others that have chosen a similar path and found it to be the right choice.
 
I know of others who don't wear them but they're on FB. It's AWESOME you gave your child the choice.....That's the key. She's eleven...old enough to have a say in things!!! As long as she has decent written English, she should do well.
 
With children you cannot force a square peg into a round hole. Your child resists and dislikes the CI for reasons unknown, but if the reasons could be known we would all find the valid. I think you absolutely do the right thing by accepting her choice. When young people are learning they learn best when the enjoy the process. for some reason your daughter finds communication using the CI extremely unpleasant. This is no minor preference. If you continued to push using the CI on her it might well sabotage her entire schooling experience, leaving her without an education. That would be terrible. Best of luck.
 
One thing you don't say is anything about frequency of mappings as she started out? Could it have just been set tooooo loud at the beginning and thus she never got used to it?
 
My daughter is 16 months old and we decided to get her bilateral implants at 12 months old. We, too, decided she will have the choice of whether or not to wear her implants as she gets older. Even now, at 16 months, if she keeps taking her processors off, we keep them off. She's already making those decisions. Other days, she wears them for long periods of time.

I agree with PP, get involved with the School for the Deaf. Get to know other Deaf people and see what a wonderful, fulfilling life she'll have, especially now that she'll be in the environment that will allow her to thrive. Signing is so important. We teach our daughter more sign than we concentrate on speech, because she's d/Deaf (not sure which she'll be in the future :lol:) and she always will be.

Are you on Facebook pages with other parents of deaf kids? That has helped me not feel so alone. There's also a page for parents of CI kids who sign. There are so many others out there that have gone through your situation, don't feel alone or isolated. We all try to do what's best for our kids!
 
Jane B. said:
One thing you don't say is anything about frequency of mappings as she started out? Could it have just been set tooooo loud at the beginning and thus she never got used to it?
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They did her mappings quite often & turned it down to see if that was the issue. They also interrogated her implant & found nothing, but we all decided just in case have it switched out. Thats when she had the revision. But she kept saying over " i hate the fake voices" sometimes she put it on & listen to music, then takes it off when shes done. Since shes 11 now I let her utilize it as she feels she needs to. Ive asked her if it hurts her now & she says no. She said she likes it quiet & likes ASL. All her mappings look great, im thinking now she just felt forced to wear it & that was her way of getting our attention. I just feel awful for all she went through :(
 
Tristen said:
My daughter is 16 months old and we decided to get her bilateral implants at 12 months old. We, too, decided she will have the choice of whether or not to wear her implants as she gets older. Even now, at 16 months, if she keeps taking her processors off, we keep them off. She's already making those decisions. Other days, she wears them for long periods of time.

I agree with PP, get involved with the School for the Deaf. Get to know other Deaf people and see what a wonderful, fulfilling life she'll have, especially now that she'll be in the environment that will allow her to thrive. Signing is so important. We teach our daughter more sign than we concentrate on speech, because she's d/Deaf (not sure which she'll be in the future :lol:) and she always will be.

Are you on Facebook pages with other parents of deaf kids? That has helped me not feel so alone. There's also a page for parents of CI kids who sign. There are so many others out there that have gone through your situation, don't feel alone or isolated. We all try to do what's best for our kids!
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Tristen, that is AWESOME!!!!! I'm VERY impressed! Are you hooked up with a good comprehensive approach school/program? As long as she gets good quality HOH style interventions ,she should develop in that area. It's really quality of programming, not quanity, and most schools/programs do offer hefty programming in that area...Just trying to reassure you in that area, since I know there's a lot of very audist propaganda out there and that can really push the mommy guilt buttons! So stoked you're giving her the choice!
 
ange26s said:
They did her mappings quite often & turned it down to see if that was the issue. They also interrogated her implant & found nothing, but we all decided just in case have it switched out. Thats when she had the revision. But she kept saying over " i hate the fake voices" sometimes she put it on & listen to music, then takes it off when shes done. Since shes 11 now I let her utilize it as she feels she needs to. Ive asked her if it hurts her now & she says no. She said she likes it quiet & likes ASL. All her mappings look great, im thinking now she just felt forced to wear it & that was her way of getting our attention. I just feel awful for all she went through :(
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Don't feel bad. At least you gave her the choice!!!! And the thing is ...she's eleven. Her use of the CI is hardwired and is as good as it's going to get!
 
deafdyke said:
Tristen, that is AWESOME!!!!! I'm VERY impressed! Are you hooked up with a good comprehensive approach school/program? As long as she gets good quality HOH style interventions ,she should develop in that area. It's really quality of programming, not quanity, and most schools/programs do offer hefty programming in that area...Just trying to reassure you in that area, since I know there's a lot of very audist propaganda out there and that can really push the mommy guilt buttons! So stoked you're giving her the choice!
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Our audiologist is about 3 hours away, and while she's been very supportive with our desire to sign and do "total communication", she's not involved in the day to day. We see her about 1x month. But we have an outreach consultant at the Deaf School in my town and she has been so supportive with our decisions, she's starting a monthly meet-up group with other families of deaf/HOH kids where she will pair educational, emotional and social aspects. Next Tuesday is our first meet-up, but on her agenda she has: How to check equipment, ling sounds, importance of signing and singing the alphabet, Halloween signs, and story time. So as you can see, its a total communication approach. There is an audiologist who is familiar with CIs at the Deaf School, but she's not one who does the programming/mapping.
 
Tristen said:
Our audiologist is about 3 hours away, and while she's been very supportive with our desire to sign and do "total communication", she's not involved in the day to day. We see her about 1x month. But we have an outreach consultant at the Deaf School in my town and she has been so supportive with our decisions, she's starting a monthly meet-up group with other families of deaf/HOH kids where she will pair educational, emotional and social aspects. Next Tuesday is our first meet-up, but on her agenda she has: How to check equipment, ling sounds, importance of signing and singing the alphabet, Halloween signs, and story time. So as you can see, its a total communication approach. There is an audiologist who is familiar with CIs at the Deaf School, but she's not one who does the programming/mapping.
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Excellent!!! And how cool? Your kid will be able to go to the Deaf School preschool when she's old enough!
 
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