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Unread 02-03-2012, 01:15 PM   #1 (permalink)
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Experiences With CI Program

I curious as to the experiences of other parents regarding their Cochlear Implant Programs. When my wife and I were deciding whether to choose an implant for our daughter we talked extensively with people at the NYU Cochlear Implant Program as well as with Manhattan Eye, Ear and Throat Hospital. Both programs dealt with us on a very professional level and at no time did they exaggerate what we could expect for our daughter and in fact, if anything they understated those expectations. In each case with Dr. Noel Cohen at NYU and Dr. Pariesier (sp) at MEETH they were very thorough in explaining the risks and made it very clear that it was our decision whether to proceed or not. At no time did they ever pressure us in the slightest.

Were your experiences similar or different?
Rick
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Unread 02-03-2012, 03:18 PM   #2 (permalink)
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Similar situation in Boston 4-5 years ago. We went through the testing at what felt like a little bit too leisurely a pace -- it took a couple of months to get a firm diagnosis. At each stage, two of which were conducted at 2 different hospitals -- two separate medical staff reports from different groups were both explicit about the importance of proceeding with language development regardless of outcome, even before we had a diagnosis of profound.

No mention of CIs was made, I never experienced any pressure to look into COs, although HAs were immediately pushed.

You can see how much ASL was emphasized in our recommendations, below:
report 1.



report 2.


We initiated discussions about CIs with our doctors, and as you experienced, Rick, we found that they understated expectations. We've been astounded at how far the results and outcomes have outshone what was described to us as expected results.
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Unread 02-05-2012, 05:22 AM   #3 (permalink)
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Norway...

Not familiar with American system and structure... but still..

.. Like Holland, in Norway, socialism "rules"..

Looking at the USA, for some "socialism" seems to be worse than communism.. A little place just before hell..
We are used to society taking care for those that are less fortunate.

When our child was diagnosed "profoundly deaf" the wheels started turning.
HA's were fitted, daycare in a deaf kindergarden was organised.. lot's of info.
But NOT a straight path to CI. We were informed about it, but even though Lotte couldn't hear anything with HA's.. we had to try them for some time...
It didn't help, and only then we were offered CI.
We were encouraged to continue with sign (-language) in order to continue communication.

(The decision for CI is not a financial one. (Socialism..)
The state pays for everything. It doesn't stop at the operation. We had follow-ups in Oslo every 2 months for the fist year. All expenses paid for. Needed new coils.. Send the same day. No charge...
Only the batteries have to be paid for, after the first three years. (We decided to go for rechargeable..))


Back to the process...
The philosophy in Norway is that all people should be allowed to be integrated in society. There are hardly any deaf schools. (Here's a list of schools, with closing date.. "idag" means "today" ... still open..)
Deaf children will integrate in mainstream schools and all support will be provided. Extra teachers, smaller classrooms. Speech (and other) therapy. Anything to allow integration in society.

With that, Norwegian "society" will offer CI since it allows integration in a hearing society. (In the same way, Norwegian society will pay for anyone that wants to learn signlanguage in order to integrate in a deaf society if needed..) Here's an article in english..
The the big decision for the parents comes, which decided from what "pot" services will come from.
One direction is to have Norwegian signlanguage as additional/main language for the child. This will open up a big pot with money and services.
The other direction is not to use signlanguage. That way, less services are available, since it seems to indicate that "your kid is doing fine"..
We are in the latter group, and it requires a lot of effort to get the services that Lotte needs. Fortunately, Lotte is doing very well, but other children/parents struggle to get that what they are entitled to because they focus on speech, not sign.

So, in a way, CI is offered to parents that find out they have a deaf child. On the other hand, excellent services are available to go any direction you want.... including sign language.
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Unread 02-08-2012, 10:08 AM   #4 (permalink)
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My daughter was implanted at CHOP, and at the time, implanting a malformed cochlea was relatively new (a year earlier, and she wouldn't have been a candidate). We were told right from the start that they had no idea how she would do with an implant. They made us no promises, and made sure we knew exactly what we were getting into. The candidacy process was a long one, and we had lots of meetings with the surgeon, the audiologists, and the social worker (they wanted to make sure your family dynamics were up to dealing with the after CI). They were very good about answers questions, and I never felt they were pressuring me into doing anything we didn't want to. Have to say, the education specialists at the hospital were VERY helpful once we hit the school years and had to negotiate what she needed in schools that never had a CI before....
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Unread 02-08-2012, 06:13 PM   #5 (permalink)
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Thanks for all the comments. I don't think there any ci parents left to add their experiences but it is interesting to notice the many similarities in our experiences even though they took place at different times, different implant centers and even different countries!
Rick
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