Implanted but anti-CI?

shel90 said:
I agree..it is sad that your cousin wont let her son learn sign language. Your cousin is in denial, obviously.
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Yeah, I'm heartbroken. I can't do anything with them. They have a big problems. The child have no father. Of course, his mom is very denial!
 
SouthFella said:
Now how can a small child tell an audiilogist what sound they are hearing ? too loud. too soft is about all they can say..
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they don't have to do that... If you have seen all the video of activations on youtube, you will get it.

What Audie can do is use NRT (Cochlear) or NRI (AB) or Impedance and Field Telemetry (Med-EL) to set mapping.

see "Setting a Map"
Fitting the Speech Processor--KidsWorld Deaf Net E-Doc--Gallaudet University's Laurent Clerc National Deaf Education Center

Cochlear Implants — Considerations in Programming for the Pediatric Population Jennifer Mertes, AuD., CCC-A, & Jill Chinnici, M.A., CCC-A, The Listening Center at Johns Hopkins February 2006 Audiology Online



although this can be done on adult, (I did get mine done to compare with my map that was set based on my feedbacks)
 
R2D2 said:
That's true. But I think that with more people within deaf culture getting CIs this will be less of a factor. We were speaking more of a personal, political decision not to wear a CI. I knew a few people who made a political decision not to wear a hearing aid despite having grown up with them but most people seem to continue wearing them or resume after a break.
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R2D2 - Aren't peer pressure and personal political decisions the same thing?
 
Yep, there are times I feel like telling some of the parents of our deaf students that they need to stop wishing for the day their kid will hear and talk like hearing children and to pls start learning sign language for their sakes! Parents who are in deep denial for too long hurt their children in the long run.
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OMG YES. It does seem that a lot of the parents are still really grieving about their child's disabilty. Then again, this type of thing isn't exclusive to parents of dhh kids. I see parents of wheelchair/walker users wish that their kids could walk, I see parents of blind/low vision kids avoiding things like cane travel, Braille etc. I see kids with mild issues being taught that the only thing important is to function like a non disabled person.
Yes, I understand the grief..........heck it took me YEARS, like until I was a teenager, to come to terms with the fact that I'm hoh,/otherwise different. I understand...........but doing something "differently" isn't that big of a deal.
 
deafdyke said:
OMG YES. It does seem that a lot of the parents are still really grieving about their child's disabilty. Then again, this type of thing isn't exclusive to parents of dhh kids. I see parents of wheelchair/walker users wish that their kids could walk, I see parents of blind/low vision kids avoiding things like cane travel, Braille etc. I see kids with mild issues being taught that the only thing important is to function like a non disabled person.
Yes, I understand the grief..........heck it took me YEARS, like until I was a teenager, to come to terms with the fact that I'm hoh,/otherwise different. I understand...........but doing something "differently" isn't that big of a deal.
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Thats true. But, what also is true is that the "experts" put things in parents heads, too. "With this technology, this surgery, this brace, this whatever, your child will walk." So, the parent does whatever is suggested, and it often just screws the kid up.

I can still remember very clearly the day that I came home from school, threw my crutches down and told my Mother I was NOT going to walk anymore with them, and that was that! She wasn't quite ready to appease me, however, and it was another two years before I finally was listened to, and it was "OK" that I didn't use the braces and crutches anymore.

As for me, I knew I was different and I was OK with it. As I grew into a teenager, I became angry and had this atitude that I didn't care what others thought of me, and I didn't. I became a loner and talked myself into the idea that I didn't need anybody. I had sort of a false confidence. It became my protection against all the crap I had been put through. It was years before I actually learned to trust people.
 
loml said:
R2D2 - Aren't peer pressure and personal political decisions the same thing?
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No way. Peer pressure is when someone is pressured to do something they don't really want to do in their heart of hearts but they do it because their wanting to be liked and accepted by the crowd is stronger.

A personal political decision is made out of ones conscience and beliefs and is motivated from within.
 
R2D2 said:
No way. Peer pressure is when someone is pressured to do something they don't really want to do in their heart of hearts but they do it because their wanting to be liked and accepted by the crowd is stronger.

A personal political decision is made out of ones conscience and beliefs and is motivated from within.
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:gpost:
 
o, the parent does whatever is suggested, and it often just screws the kid up.
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Indeed.....so many times the emotional aspect of having a "different" child really isn't adressed.....
 
my son was implanted twice and neither worked. We have so far decided to leave the second implant in to avoid possible complications and risks of surgury when at this time there doesn't appear to be a need for removal. He lost his hearing due to menengitis and his cochlea was ossified which may have impacted the success.
 
Just as another datapoint: I was implanted in 1990, at age 7. My parents did talk to me about the implant, and I did understand basically what was going to happen - looking back, I'm glad they did this. I do remember having a lot of fears about the SURGERY and not the IMPLANT - it's pretty difficult to separate those things for young kids. In my case, it was heightened by the fact that I'd had a difficult recovery from anesthesia on my 6th fistula surgery (the implant was my 7th and final surgery).

Today, I still wear my implant, for the most part - but I have considered not wearing it. Day-to-day, it makes my life easier, and I enjoy being able to hear my 2-year-old talk, and all the usual things like that. However, I will confess that sometimes when I'm alone at home, I'll just take it off - "for a break" - and it can be nice and peaceful. Doing that did cause me to miss a UPS delivery dropoff today though... grr!

I'd say that if your child is old enough to understand at all, they should at least be made aware of what's going on. Any kid - especially one that's NEVER heard - may have some weird or scared reactions, especially at activation - but, like I told my mom the day after I was activated, "I think it's going to be just fine." You have to be willing to push a little bit, and to work HARD, but it can happen - and there's always the option to take it off for whatever reason later - just like I'm doing now, even though I'd never consider going into a law firm for an interview without it! It's a continual back-and-forth, and I don't think anyone should let themselves be swayed too much by the "militants" on EITHER side of the spectrum. Different choices are appropriate for different people, and the important thing is caring enough about your child to take the time to learn about which options may be appropriate for them in their individual circumstances.
 
TheWGP said:
Just as another datapoint: I was implanted in 1990, at age 7. My parents did talk to me about the implant, and I did understand basically what was going to happen - looking back, I'm glad they did this. I do remember having a lot of fears about the SURGERY and not the IMPLANT - it's pretty difficult to separate those things for young kids. In my case, it was heightened by the fact that I'd had a difficult recovery from anesthesia on my 6th fistula surgery (the implant was my 7th and final surgery).

Today, I still wear my implant, for the most part - but I have considered not wearing it. Day-to-day, it makes my life easier, and I enjoy being able to hear my 2-year-old talk, and all the usual things like that. However, I will confess that sometimes when I'm alone at home, I'll just take it off - "for a break" - and it can be nice and peaceful. Doing that did cause me to miss a UPS delivery dropoff today though... grr!


I'd say that if your child is old enough to understand at all, they should at least be made aware of what's going on. Any kid - especially one that's NEVER heard - may have some weird or scared reactions, especially at activation - but, like I told my mom the day after I was activated, "I think it's going to be just fine." You have to be willing to push a little bit, and to work HARD, but it can happen - and there's always the option to take it off for whatever reason later - just like I'm doing now, even though I'd never consider going into a law firm for an interview without it! It's a continual back-and-forth, and I don't think anyone should let themselves be swayed too much by the "militants" on EITHER side of the spectrum. Different choices are appropriate for different people, and the important thing is caring enough about your child to take the time to learn about which options may be appropriate for them in their individual circumstances.
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:gpost:
 
TheWGP said:
Just as another datapoint: I was implanted in 1990, at age 7. My parents did talk to me about the implant, and I did understand basically what was going to happen - looking back, I'm glad they did this. I do remember having a lot of fears about the SURGERY and not the IMPLANT - it's pretty difficult to separate those things for young kids. In my case, it was heightened by the fact that I'd had a difficult recovery from anesthesia on my 6th fistula surgery (the implant was my 7th and final surgery).

Today, I still wear my implant, for the most part - but I have considered not wearing it. Day-to-day, it makes my life easier, and I enjoy being able to hear my 2-year-old talk, and all the usual things like that. However, I will confess that sometimes when I'm alone at home, I'll just take it off - "for a break" - and it can be nice and peaceful. Doing that did cause me to miss a UPS delivery dropoff today though... grr!

I'd say that if your child is old enough to understand at all, they should at least be made aware of what's going on. Any kid - especially one that's NEVER heard - may have some weird or scared reactions, especially at activation - but, like I told my mom the day after I was activated, "I think it's going to be just fine." You have to be willing to push a little bit, and to work HARD, but it can happen - and there's always the option to take it off for whatever reason later - just like I'm doing now, even though I'd never consider going into a law firm for an interview without it! It's a continual back-and-forth, and I don't think anyone should let themselves be swayed too much by the "militants" on EITHER side of the spectrum. Different choices are appropriate for different people, and the important thing is caring enough about your child to take the time to learn about which options may be appropriate for them in their individual circumstances.
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When our daughter's first implant failed in 2001 she was 14 and involved completely in the decision to be re-implanted. Since then we have brought up the possibility of going bi-lat a few times but she does not want to do it. We have not brought it up to her in the last few years as it is her decision to make. She knows she can do it, has a lot of friends who have done it but has no interest in doing it, her decision.
 
Rick that's awesome!!! I have to say I think most people should hold off on doing the bilateral option, until the kid is a little older. The thing is, that bilateral is more "just nice to have", and the sound localization and comfortable listening levels in noise can be acheived with a hearing aid in the other ear.
 
deafdyke said:
Rick that's awesome!!! I have to say I think most people should hold off on doing the bilateral option, until the kid is a little older. The thing is, that bilateral is more "just nice to have", and the sound localization and comfortable listening levels in noise can be achieved with a hearing aid in the other ear.
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It's much, much more than "just nice to have"...

Have a look here... (there are more pages... just click on the picture..)
some

.. I know... It's by "Advanced Bionics" and it's a bit old...

Going "hearing nothing" to "hearing all sounds" is a huge improvement (for some.... *** ) and compared to that, bi-lateral CI might be small. But it is a great help for anyone that chooses it.

And... how is a HA going to help on the other side..... most CI-user are profoundly deaf on both sides.... If they would be able to hear as good with a HA on the other side.... most likely... they would not qualify for CI...

Knowing where sound comes from is a big thing. There's a big improvement in listening-abilities, and therefore less tiresome to learn / understand speech.
I experience it daily !!
Having two also means that in case of a malfunction on one side, there is always another side to continue hearing... That, I experienced only once or twice....

*** - CMA - "For some".. since of course they are plenty of people here that have the opinion that hearing is not a big deal... Don't want to disrespect those people..)
 
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deafdyke said:
Rick that's awesome!!! I have to say I think most people should hold off on doing the bilateral option, until the kid is a little older. The thing is, that bilateral is more "just nice to have", and the sound localization and comfortable listening levels in noise can be acheived with a hearing aid in the other ear.
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For my situation, it's not true. I have tried wearing my hearing aid in my good ear, but for my situation, the sounds are so different from each other, and I feel that the HA overpowers the CI. The HA picks up a LOT of the low frequencies, and the CI picks up a lot of Highs...so it sounds like the sound is going back and forth between the two, it's just annoying to me. I'm post 4 months implanted in my left. I just had surgery on Thursday for my right. Personally, if someone really wants to have bilateral, the surgeries should be done close together. Some people can see that one is good enough, other people say one is just SO good that they want to have other done. The reason why I did it so quickly was basically because I am still "new" and going to Audie for mappings and stuff. If I waited a year or two, then I would have to "start over" with the training, and that may throw me off a bit. Now that I know exactly what to expect when I get activated, and I can do the training for both ears at the same time. I'm the only one out of about 10 or 12 CI friends that have bilaterals.

I just feel that this comment above is an hasty generalization, it's not just "nice to have".
 
LadySekhmet said:
For my situation, it's not true. I have tried wearing my hearing aid in my good ear, but for my situation, the sounds are so different from each other, and I feel that the HA overpowers the CI. The HA picks up a LOT of the low frequencies, and the CI picks up a lot of Highs...so it sounds like the sound is going back and forth between the two, it's just annoying to me. I'm post 4 months implanted in my left. I just had surgery on Thursday for my right. Personally, if someone really wants to have bilateral, the surgeries should be done close together. Some people can see that one is good enough, other people say one is just SO good that they want to have other done. The reason why I did it so quickly was basically because I am still "new" and going to Audie for mappings and stuff. If I waited a year or two, then I would have to "start over" with the training, and that may throw me off a bit. Now that I know exactly what to expect when I get activated, and I can do the training for both ears at the same time. I'm the only one out of about 10 or 12 CI friends that have bilaterals.

I just feel that this comment above is an hasty generalization, it's not just "nice to have".
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I agree with you about bilatarial implants. It is not just "nice to have." You will really notice a big differences with both. The biggest differences is sound quality, it sounds crisper than one. Yes, location of sound improves, but the quality of sound is so much better. When one battery dies that is when you hear the differences.

With my situation, HA were no use and with the CI. I would have just gotten the other ear done within a year. So that is one reason to get both done at once.
 
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