Will a cochlear implant work for...

kat05

New Member
We use both talking and signing. The problem is that today, during our visit to the paediatrician for vaccination, he told me to visit neurologists AGAIN since my boy's symptoms (deafness, skin rash for which we have no diagnosis and mild hypotonia of the trunk which caused delays to gross motor skills) may lead to "something else". When I asked him what to expect he said he doesn't know but it's the different symptoms coming up that make him suspicious and thoughtful about the CI's benefits (our ENT doctor says he will definitely benefit from the CI). Any similar experiences with these 3 symptoms?
 

kat05

New Member
We use both talking and signing. The problem is that today, during our visit to the paediatrician for vaccination, he told me to visit neurologists AGAIN since my boy's symptoms (deafness, skin rash for which we have no diagnosis and mild hypotonia of the trunk which caused delays to gross motor skills) may lead to "something else". When I asked him what to expect he said he doesn't know but it's the different symptoms coming up that make him suspicious and thoughtful about the CI's benefits (our ENT doctor says he will definitely benefit from the CI). Any similar experiences with these 3 symptoms?
 

TT

New Member
My son is profoundly Deaf with Sensorineural Hearing Loss. We this at 10 months, the cause still unknown. At the time they didnt do CI before age 2. He had his CI at age 4. We started using sign language to get communication going. He is 17 now, his speech is good enough to function perfectly in a hearing world although he goes to a school for the deaf and signs. My advice from our experience is have the CI done as soon as possible. An audiologist can do a brain stem test to determine without doubt whether or not your son is in fact deaf.
 

bbaseballboy123

New Member
My son is profoundly Deaf with Sensorineural Hearing Loss. We this at 10 months, the cause still unknown. At the time they didnt do CI before age 2. He had his CI at age 4. We started using sign language to get communication going. He is 17 now, his speech is good enough to function perfectly in a hearing world although he goes to a school for the deaf and signs. My advice from our experience is have the CI done as soon as possible. An audiologist can do a brain stem test to determine without doubt whether or not your son is in fact deaf.

You seriously sounded like my mom until you said 17 years old because I'm 18 now. I was scared for a second that my mom actually made an account on all deaf lol
 

SouthFella

New Member
Cochlear America is dealing with a recall now on their new implant.
AB has had 5 recalls in the last 10 years and many implants still failing today.

I wouldnt put cochlear implants on my kids . And yes my kids have a hearing loss.

Deafness is not a " disease" and the sooner the parents and deaf child accept their hearing loss, the better. Parents of children with a hearling loss need to learn sign language .
 

bbaseballboy123

New Member
But all parents in my area that got implants for their kids are actually very successful in terms of life and hearing. I think it all matters what education the kids has. I personally am very proud to say i was trained by one of the best teacher for the deaf in the country. She pretty much raised me, and all of her other students. I have met all of her students in the past and they can all hear just as well, talk very well (cant tell if theyre deaf) and the girl that goes to school with me just got her implants a few years ago (middle school age i think) and she is hearing very well/talks very well... I have to give prop to the teacher.
 

CSign

New Member
But all parents in my area that got implants for their kids are actually very successful in terms of life and hearing. I think it all matters what education the kids has. I personally am very proud to say i was trained by one of the best teacher for the deaf in the country. She pretty much raised me, and all of her other students. I have met all of her students in the past and they can all hear just as well, talk very well (cant tell if theyre deaf) and the girl that goes to school with me just got her implants a few years ago (middle school age i think) and she is hearing very well/talks very well... I have to give prop to the teacher.

I'm happy to read you've had a positive experience and that the CI has been a successful tool for you. What kind of services do you have in school? Out of curiosity as I don't recall reading it anywhere, do you know how to sign?
 

bbaseballboy123

New Member
It has been a successful tool for me about many others from my area. In fact, including me, i believe 2 others in the same school district were the first top 10 child (babies 2 year olds) in the country to be implant. and damn, each turned out to be fine in terms of hearing/talking.
Mainly because of the teacher for the deaf we had as well as proper PPT and IEP goals placed. And the accomandations we had/requested/upon of needing.

And I am taking classes now to learn ASL.

In fact, I had just send a letter to my state congressmen regrading the deaf disability rights for the state of Connecticut:
(if anyone was wondering, i was very easily to pass the state testing, but many other deaf students in the state were NOT able too. However, my school district had very high success rate on deaf students passing.)
February 16, 2012

Dear------------
I am writing this letter to you as one of the many deaf students in the state of Connecticut. The reason I am writing to you is to ask you to support the Deaf Child Bill of Rights which is currently up for vote.
I am a 17 year old deaf student from South Windsor High School. I have had excellent support services from a highly qualified teacher of the Deaf who knew what was needed for my success. Without her, I would not be where I am today, accepted into Penn State University, University of Connecticut, as well as getting accepted into Bill Gate’s University of Washington Summer Program for Computer Science. I honestly consider myself to be very lucky to receive the education I had from K to 12th grade.
I would have not been as successful as I am in the education world if it weren’t for the speech, and communication needs related to my deafness. Seeing myself receive such education, I hope that all other deaf students in other districts could receive the same attention I had. Deaf students can become very successful; I have seen many students from my district to become specialists in the field of Nursing, and audiology. The reason being is simply because they have received an incredible amount of attention of their needs. Allowing many Deaf and Hard of Hearing students in Connecticut receive the same services I and many other deaf students from my district will greatly improve the scores on the Connecticut’s Master Test, as well as their communication skills.
The Deaf Child Bill of rights, a language and Communication Plan recognizes the unique communication and language needs of deaf and hard of hearing children. This Language and Communication Plan will help less experienced educators address the unique listening, language and communication needs of this population of Connecticut citizens. It also ensures that professionals who work with these students would be highly qualified to advocate and plan for them. Further, it will provide accessibility of academic instruction, assistive devices, communication plans and assist administrators with planning physical environment accommodations.
I urge you to vote for this critical piece of legislation. It will be life changing for the Deaf and Hard of Hearing children in Connecticut who are significantly behind in reading, math and writing. It is always remarkable to talk to deaf people that grow to be successful despite their deafness.

Sincerely,

Patrick
 

CSign

New Member
Great letter! That's great that you're being proactive with your local government, and advocating for the needs of deaf students. Did you use CART or note takers? Congratulations on your acceptance to those colleges. You have fun times ahead!
 

bbaseballboy123

New Member
Thanks, and I feel that someday I want to donate to some deaf charity for the future. I do have a notetaker currently. I did call off all the sound fields, so I do NOT use any sound assistance. However, I have many accommodation such as rugs/captions on videos.

I used to have extra time on essays ect. I did take advantage of extra 15 minutes on the SATs.
 

stephaniep21

New Member
My 19-month old son is a CI candidate, according to our ENT doctor he is appropriate (no malformations of the inner ear however we have not found WHY he is profoundly deaf). He also was a late walker and has a face rash (no pathological findings for either of these situations). I was wondering how sure we can be that he will get benefit from the CI? Also must we assume that his profound deafness is permanent? I read about kids that were implanted while not being really deaf. THis makes it tough for us to decide the CI (on the other hand we may be loosing time...)

While there is nothing wrong with CI, I personally think young children shouldn't be implanted because they should decide if they want to be implanted for themselves. That being said, you are definitely doing your best to make an informed decision, and that is admirable. Just remember that he can always get CI later, but it can't be undone if/when he does get it. Also, remember that your son can lead a perfectly normal, happy life with or without CI. Good luck! :)
 

Anij

Well-Known Member
Wirelessly posted (Blackberry Bold )

kat05 said:
We use both talking and signing. The problem is that today, during our visit to the paediatrician for vaccination, he told me to visit neurologists AGAIN since my boy's symptoms (deafness, skin rash for which we have no diagnosis and mild hypotonia of the trunk which caused delays to gross motor skills) may lead to "something else". When I asked him what to expect he said he doesn't know but it's the different symptoms coming up that make him suspicious and thoughtful about the CI's benefits (our ENT doctor says he will definitely benefit from the CI). Any similar experiences with these 3 symptoms?

One of my concerns (and something you need to think about and discuss with multiple professionals) is that if he's implanted he will need to absolutely ensure he gets an implant with a surgically removable magnet - otherwise he will not be able to have an MRI if he needs one in the future. To remove the magnet requires a minor surgery - then the MRI can take place, then the magnet re-inserted surgically (for each MRI)... So if routine MRIs etc are likely in his future, I'd suggest putting off the CI for now.

The most important thing is to surround him with language - signing, getting involved with signing play groups etc are all very important for language development (spoken and signed) :)
 
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