Dislike my cochlear device after 3 years using it...??

[posts from hell]

It's just that you said you hoped that she kept up with all that.

I understand.

 

[GrendelQ]

It's just that you said you hoped that she kept up with all that.

I understand.

Right -- it's why our goal isn't to mainstream her, despite pressure to do so and the ugly opinion many people have of deaf schools being factories of failure. It's to educate her. And we want ASL to be an integral part of that. I'm more worried about managing to keep ASL in her life than spoken language -- we work at maintaining ASL in her day to day, spoken language is everywhere -- hard to avoid it.

 

[posts from hell]

Right -- it's why our goal isn't to mainstream her, despite pressure to do so and the ugly opinion many people have of deaf schools being factories of failure. It's to educate her. And we want ASL to be an integral part of that. I'm more worried about managing to keep ASL in her life than spoken language -- we work at maintaining ASL in her day to day, spoken language is everywhere -- hard to avoid it.

Yup. That's what I've seen you say for a while.

 

[Danb]

My 5YO uses ASL fluently, as well as spoken English, and she has 2 CIs. It's a GREAT combination for her, and one I hope she continues throughout her life.

Did she get the CI's before or after she learned ASL?

I have an interesting story but no real point to it...

When my nephew was 2 years old he was diagnosed with having a communication disorder. He has perfect hearing. He could not figure out what he was trying to say and would get frustrated and start to scream. Specialists started to teach him sign language. Once he started to learn sign language he picked up on spoken language. He no longer needs sign language. I don't know if he uses it still.

The thing is, his father didn't begin to speak until he was almost 4 years old. His father didn't take any form of specialized teaching and was never diagnosed with any disorder, he just learned it late.

 

[GrendelQ]

Did she get the CI's before or after she learned ASL?

I have an interesting story but no real point to it...

When my nephew was 2 years old he was diagnosed with having a communication disorder. He has perfect hearing. He could not figure out what he was trying to say and would get frustrated and start to scream. Specialists started to teach him sign language. Once he started to learn sign language he picked up on spoken language. He no longer needs sign language. I don't know if he uses it still.

The thing is, his father didn't begin to speak until he was almost 4 years old. His father didn't take any form of specialized teaching and was never diagnosed with any disorder, he just learned it late.

That's pretty wild. My daughter started learning ASL the week she came home from China to live with us at 1YO, a couple of months before we had a medical diagnosis of profound deafness, and about 9 months before activating her first CI, and we think that this early grasp of language and vocabulary had a significant positive impact on how quickly she learned English and still provides support.

 

[Danb]

Dan, buy some ear plugs and give them to your friends then tell them to wear them the next time you go out. Maybe add noise-blocking earphones. Tell them they can't remove them all night...just like you can't remove your deafness.

Thanks for the suggestion.

I have actually told people the same thing. Their reply is to ask why i'm giving them such a hard time. Or, is something wrong? Or, are you mad at me about something? Or assume i am depressed and I should see a counselor, because i don't want to hang around them and that i must be withdrawing. Or they ask can I get another CI to fix hearing problems in crowds?

Not even thinking that maybe i don't want to go through the ordeal of surgery again. The surgery for the first one was difficult and permanently affected my balance. I still have enough balance to walk but sports are much more difficult now. The surgery was was very painful, made me throw up a lot and started an addiction to pain killers that i'm still trying to kick.

They know about the addiction, and pain and vomiting, but still think my life is so horrible because i can't hear well in crowds that i should just go through it all over again, because MAYBE it would FIX it.

I guess i'm starting to see that i need a different group of people for support.

 

[AlleyCat]

I understand your feelings, Dan. I don't have a CI but do wear HAs. I have a profound loss, so social gatherings in noisy places with family or hearing friends is next to impossible. I've reached a point where sometimes I just don't go. My family must think I'm anti-social, but I'm not. Its just too hard. And I've made that clear to my family. They seem to accept it but at the same time they don't go out of their way to make sure I stay in the loop. So hence I often don't go. I know so many others here where I live that say the exact same thing. Sorry I can't be of more help to you, but I just wanted to say you are not alone!

 

[Danb]

That's pretty wild. My daughter started learning ASL the week she came home from China to live with us at 1YO, a couple of months before we had a medical diagnosis of profound deafness, and about 9 months before activating her first CI, and we think that this early grasp of language and vocabulary had a significant positive impact on how quickly she learned English and still provides support.

Seems like there is an interesting back story for your 5 year old. Why was she in china? Was she born deaf? Why did you choose bilateral CI's instead of a single?

 

[drphil]

Hi again DanB. As you read the various comments- not too many match yours or mine experiences. Not surprising when you think about it. What to do in our specific circumstances?

The person who can "assist " you the most-- is your audi and one must be "ruthlessly honest" at all hearing assitance sessions. This "advice" came from the Cdn Hearing Society "Coping with your Hearing Loss" classes here in Toronto.

Consider seriously.

Implanted Advanced Bionics-Harmony activated Aug/07

 

[posts from hell]

Hi again DanB. As you read the various comments- not too many match yours or mine experiences. Not surprising when you think about it. What to do in our specific circumstances?

The person who can "assist " you the most-- is your audi and one must be "ruthlessly honest" at all hearing assitance sessions. This "advice" came from the Cdn Hearing Society "Coping with your Hearing Loss" classes here in Toronto.

Consider seriously.

Wrong.

The person who can assist him the most is himself.

 

[AlleyCat]

Wrong.

The person who can assist him the most is himself.

I agree. Like how I decide whether I hang out with my family or hearing friends (that don't sign) or not. I won't be pushed into an uncomfortable situation if I can help it.

 

[overthepond]

Nope youre not the only one.

I have PLENTY of friends who has CI and they ASL.

Ditto, I am a CI user of 2.5 years after lifetime of profound deafness and still uses BSL/SSE and spoken english.

I have many many friends who lives near me still uses BSL/SSE/spoken english even they have a CI and some of them had theirs since toddlerhood.

I am a hermit, I hate social gatherings for background noise/lack of deaf awareness. I will only go if my very deaf aware brother, 2 hearing friends (both lives abroad at the moment) or one of my colleague comes with me otherwise there is no point in going and fake my enjoyment. I rather to go out with my deaf friends.

My CI isn't perfect but it beats HA any time.

and for your info, Danb, Grendel adopted her daughter from China.

 

[GrendelQ]

Seems like there is an interesting back story for your 5 year old. Why was she in china? Was she born deaf? Why did you choose bilateral CI's instead of a single?

We adopted her at 1 from China, they didn't know she was deaf while there (her records noted she was 'stubborn'), but doctors here believe she was profoundly deaf from birth. Because she had been without any language input her first year, we opted to begin ASL immersion immediately, not wanting to wait until we assessed any other options. We tried HAs initially and then chose a single CI after we found the HAs provided very little sound (and she disliked them enormously). She did extremely well with the first, reacting to voices immediately, never rejecting it, often requesting it in the morning, and research showed some benefit from 2 in hearing in crowds and loud environments (like classrooms, which we knew she'd been in for a long time to come), which we later found to be far understated. So, a year later she had a 2nd CI. We've found that when she wears 2 it makes an enormous difference with her ability to hear especially in less than perfect environments.

 

[overthepond]

I only had 2 mappings and then the doctors said that the amount of hearing i get it is pretty much the max that anyone gets. So i didn't follow up with anymore mappings.
TWO!!!! Last time i checked i had 100 mappings in 2 years! I had difficult first 18 months (it's all down to my hearing history I was profoundly deaf since birth) but now it had settled. I get checked yearly now


Yes it is uncomfortable. It kind of digs into my ear. I can only wear it for a few hours. I've tried using many different ear hooks but the CI is too big for my ear.

I have freedom and yes it's uncomfortable, I use longer ear hook and put moleskin under the hook where it beds on my ear...

I don't have balance problems from the CI now, but did when i first got it. Though the imbalance was caused by swelling from the surgery and not the CI device.

Yes i think you could be right about people expecting too much from the implant. I explain to them that even though i have about %85 percent of my hearing back that it is still not like natural hearing. I still miss a lot of words and it is very difficult to keep track of a conversation. I can't seem to follow a conversation when there is more than 2 people, or if someone is talking too fast. If these things happen i get frustrated and start to panic. I actually will get panic attacks and need to leave the room. I won't even attempt being in a room with more than 10 people, and I avoid that at all costs.

I have a friend who is going through similar as you are with different history. She had been profound deaf and used BSL/hearing aids all her life and was implanted 3 years ago. Her friends expected too much, she is struggling with their expectations as they expect her to be "hearing" after few months of recieving the CI. She had told them many many times that it's not the case! However what I did before i was implanted was that I told my friends/colleagues and family not to expect much and treat me as if i was same with HA although i have exceeded my expectations but I kept it to the minimum because even it had improved my hearing but I still need accommodations/help with communication.

If i had a choice i would rather communicate without it, but i am 100% deaf in both ears without the CI. I don't know how else I could communicate with the people i know because they would not be willing to learn sign language.

I'm kind of stuck, not sure what to do about it all. Its frustrating.

.

 

[Hohtopics]

CI's work much better in people that were hearing most of their lives.

I have several friends that were deaf since birth, never wore hearing aids, and got CI's with disastrous results. I also have friends that wore hearing aids most of their lives and got CI's with mixed results.

As for those that've been deaf since birth, yes, generally speaking those that wore hearing aids prior to the implant tend to make a better use of the CI than those who didn't.

However, I think to some extent, it's also a question of the user's motivation. That is their own desire to improve their auditory, lipreading and speech skills. IMHO.

 

[Danb]

there is no point in going and fake my enjoyment.

and for your info, Danb, Grendel adopted her daughter from China.

Yeah that is exactly what happens. I have to fake enjoying things.

Its nice to read your replies and see that i'm not the only hearing impaired hermit out there.

Grendel did you live in china at the time of the adoption? How did you find her?

 

[Bebonang]

Right -- it's why our goal isn't to mainstream her, despite pressure to do so and the ugly opinion many people have of deaf schools being factories of failure. It's to educate her. And we want ASL to be an integral part of that. I'm more worried about managing to keep ASL in her life than spoken language -- we work at maintaining ASL in her day to day, spoken language is everywhere -- hard to avoid it.

That is what I would like very much back in the old days when I was in the mainstream schools. You did get it when she need ASL just like when I need ASL in both elementary and high school so that we can understand what is going on in the classroom, especially in the hearing classrooms. I love it when you said that.

 

[drphil]

Pfh: as I understand DanB was his reactions to his Cochlear Implant of 3 years. My comment related that his audi can "assist" him as he as well as any Implanted person can't "map" their own implant. Do you think that DanB can map it himself? I can't.
What "dream world pfh are existing in?

The importance of any person with an Implant is to be ruthlessly honest to the audi- who hopefully can help.

However how one deals with their Cochlear Implant is UP TO YOU. Not this computer screen! Peace pfh.

Implanted Advanced Bionics- Harmony activated Aug/07

 

[GrendelQ]

That is what I would like very much back in the old days when I was in the mainstream schools. You did get it when she need ASL just like when I need ASL in both elementary and high school so that we can understand what is going on in the classroom, especially in the hearing classrooms. I love it when you said that.

Bebonang!

 

[deafdyke]

That's one of many reasons why I think it's important that she not only have fluent use of ASL, but is living in a community where having a working CI or not doesn't diminish her ability to communicate, to learn, and to interact with peers. I don't ever want doors closed to her, I never want her to feel isolated or disoriented because a battery dies or a static surge fries a program while traveling. I want her to be able to move seamlessly from accessing sound to not accessing sound or vice versa.

This is amazing......finally a parent who GETS IT! The thing is, doctors and experts do not understand that while many deaf kids can aquire speech abilty on the level of a hoh kid, the speech and hearing skills are usually just sufficent in one on one or perfect listening situutions.
Heck, look at the guy who posted here whose CI went kerflueey and can't even speechread?!?!
I actually have a personal ancedote. I went to Hear@Boston today. We went to the Aquarium. It was very noisy. There were a bunch of us young folks who could hear and speak but could ALSO sign, and make use of the 'terp. The late deafened people who only depended on sound, kept finding the difficult listening situtions very overwhelming and kept havign to flee.