I want to start this by saying I received Rebecca into my home with a CI and we have to provide her with her CI everyday because it is a "medically necessary device".
I have found some very peculiar things when Rebecca has not worn her CI. The only times that she has been without her CI have been when she first wakes up, before her hair is dry, if she is engaging in a physical activity (like jump roping), it is an extremely loud environment or one day we went to Six Flags and she did not want to put it on just to take it off 10 minutes later again.
When she is not wearing her CI, she is more in tune with what is happening around her - she pays much better attention to the family and we find ourselves repeating ourselves less. The CI definately has it's advantages though like getting her attention when she is walking off, etc.
I could definately see Rebecca doing better in school and in life without her CI. It will continue to be her choice and she will never know that I think this - but I do. I think that she uses her CI to control her hearing. When she wants to hear - it's on and her attention is 1/2 way on. When she doesn't want to hear with her CI, she turns it off intentionally - tells the school it's broken to get out of class, says her batteries are dead, etc. The only times that we have her full attention is when her CI is off and she is totally reliant on the signs that we are giving her.
It bothers me that it is another avenue for her to control her situations instead of deal with them. I guess if she didn't have the CI, she would put her head down or look away so I don't know why it bothers me so much but it does.
This is definately not true for all parents and I know that. Rebecca was not implated until she was around 5 years old. She also has a past that she has to overcome and is also losing her vision. There's a lot going on with her and I know this could give different results. Besides that, all children are different and each parent has to decide what is best for their child. I'm sure at the time, CI was the best choice for her - I'm just not sure that it still is.
Rebecca teeters between the hearing world and the deaf world as I know many people do. Some days, she does not want to sign at all and only wants to voice and will repeat herself 4 or 5 times before signing it. Today, she did not want to sign the words to the songs at church. Other times she will put our hands down and tell us to stop signing. Some times she wants me to interpret and help and others she does not want me at all. This is most frustrating to me when I have worked on what I am going to need to interpret for her for a week and then she doesn't want me signing at all.
Anyway, I'm just ranting now. I think I would be one of those parents who would be extremely proud if she decided one day to put her CI away and live as the deaf person that she is.
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What about asking her how she feels about her C.I.? That will give you a better idea what's going on.
Deaf children have been doing this with their hearing aids for at least three generations, so it was interesting (to me at least) to find that CI's were no exception.
Do the same as distracted parents did with the hearing aids: take the child to the CI audiologist and make sure it is properly adjusted at least once every year. Keep the batteries fresh and charged. Allow her to take it off for certain activities or when she feels like it, and protect her from harsh noises that make listening unpleasant. Offer her pleasant sounds (that are still soothing even when filtered through a CI) to relax her.
If Rebecca someday in the future throws the CI's in a drawer, though, it won't be the first time. At least you tried, and she will have the memory of sounds in case a future hearing device is produced that is far better.
I think she's still struggling with her identity of being deaf or hearing. If she hasn't been implanted with CI, she'd probably accept the fact that she's deaf. She has CI and it may have made her feel that she wants to be hearing because she was able to hear sounds etc. So no idea how long the struggle would take. Try talk to her about how she feels being deaf or "hearing" and see how it goes. I feel real sorry for her to go through that ordeal. It's too much for her to take especially for her age. I hope that she'll find what she's looking for to make her happy.
I'm more concerned w/her being so visual if she's losing her vision.? Has she been taught to use her ci? People need to have auditory therapy whether they are very berbal or not to learn to hear. Hearing doesn't just come naturally. I'm also concerned that her map isn't right. She should be going probably every six months to have that seen about if she's not able to tell you when her frequencies need adjusting. I say this because loud noises shouldn't bother her. During mapping they set the comfort levels so this is why she may need checked, they can change w/growth spurts and more. Now I'm not saying she just doesn't like it...but if she's losing her vision her new found hearing could really be of assistance.
I, too, am one of those parents who feels my daughter's identity is best served as a Deaf person. I don't feel her deafness is something that must be fixed.
Here is a post that I did on the issue of cochlear implants...
Deaf Darling
maybe she's trying to fit in. that's where identity comes into play.
I remember when i was a kid, me and dad would go to see 'jurassic park'. being the small town it is; there was no captions and some kids i knew from the public school were there. i insisted to dad not to translate the movie for me because i didn't want them to see that i needed assistance. of course, when the movie started, i insisted what was going on.
times like those are ripe to let her try hanging out with more of her own peers. nothing is as inspiring and causes the most personal growth as having a deaf child hang out with other deaf children. consider a deaf camp; one that has strong ties to a deaf school (and make sure the staff know sign language). also consider a CI camp too; never know which she'll enjoy more.
Great post :).
Candice,
I just posted a blog for you with another mother's idea that really touched me...hope it helps. Big hug, Jodi
http://rallycapsdotnet.blogspot.com/
Ok...lots to comment on...
Mishkazena, Rebecca's language is still extremely limited - she likes her CI is all that she will say when asked, but sometimes I see different. When asked questions it is mostly yes or no answers that she gives. I really look forward to the day when I can ask her and get her opinion, but she's just not there right now.
Dianrez - Thank you for your comments. We have been to the audiologist. We went in November. I like the pleasant sound idea - what kinds of sounds would those be?
Michelle - She is definately struggling with her identity. We comfort her with telling her that we love that she is deaf, we have deaf things around our house, shirts, etc. I told her that one of my favorite things about her is that she is Deaf. I try not to make a big deal about it, but I do include it in our daily life.
Anonymous - We've had her mapped & she has had audio visual therapy before. We have not been able to find an audio-visual therapist outside of her school that she could attend. That is something that I am still searching for. The audio visual therapist that she was attending before would be about 2 hours away from us and since I work full-time it is very difficult and just not feasible for me to do right now. I see the advantages of having hearing when she loses more sight. However, right now we are just living for now & right now she needs language-however she expresses it, she needs language!
Ashley's Mom - That is how I feel, I just wish others saw it that way. I don't know if I would have made the same choice when Rebecca was 5 - since she had absolutely no language other than "clicking". The implant probably definately jump started her language.
Strudel - We are already looking at camps for Rebecca this summer. We have 2 picked out - one is an ASL camp for the entire family and the other is a foster camp that my other child went to last year-it helps build self-esteem, confidence and helped her to understand that she is not alone. They have an interpreter there, but it is not a deaf camp.
Jodi Cutler Del Dottore - We are back to the language thing with Rebecca journaling. I wish that she could journal and I look forward to when this is an option. Right now Rebecca is not even writing in complete sentences or having her own opinions in most cases.
Candice,
What does Rebecca LIKE doing? What makes her happy in this moment or what builds her self-esteem? The camps sound great. Try to give her a little more of that. You are doing an amazing job understanding your child even though she isn't communicating all she feels - you are on top of everything. Yours is not an easy situation because you can't say, we'll get rid of the ci because she will need the hearing the ci provides. Keep doing all that you are doing,it sounds like you are on top of everything and understand your daughter even though you feel kind of helpless right now. Follow her lead right now and allow her to reach a comfort level and trust you. I strongly suggest that you join the yahoo support groups Listen-Up and the Pediatric Cochlear Implant Circle. There are parents who have been where you are and who may be in your same situation. You may find more support in these groups, sometimes just lurking helps. Big hug, Jodi
Who in the world told you that the CI is medically necessary device?? In what way, it does not keep her alive, I am very opposed to children having CI, I feel hearing doctors are tring to "fix" our deaf children, they were born deaf, and until that child can make the choice them selves, I feel they should nothave the CI. I agee with the others let her choose. I dont know where you live, but in Houston there is a deaf church, Woodhaven Baptist. Go visit if you can.
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