Why adults choose CI's for their children

[Cloggy]

........However, it's all about language development when you made your CI decision, and daresay I suggest you may have to wait a while to see how your daughter's language development progresses in order to gauge whether your CI decision was the right one. Optimistically, I truly and sincerely wish the best, that your daughter will acquire age-appropriate language skills she will need, well into adulthood.

Even though language development / oral-auditive communication is the main goal, there are experiences that enhance the decision.
It is not as if we need confirmation that it is a good decision, it's about appreciating the decision.

Language-development is well on it's way. Music appreciation is not for all, but I do not know if you hear the same way I do. We grow up with our private sound-perception. BUT, rithm and melody still exist and can be appreciated no matter how it sounds.

Think about this.

The chinese music sounds weired to us, but it's still music.

 

[Cloggy]

Cloggy, My condolences to you as well. I hope that your daughter has good experiences in her surroundings but from your response, it sounds like you are expecting her to hear the way you and I naturally hear. Please correct me if I am wrong. From what I understand, assisted hearing with a CI is nothing like the natural hearing that you and I have. A person with a CI may not even be able to enjoy music. For some it may even be painful. It depends on so many variables.I think that for most this is true. And I would suggest that if anyone is under the impression that a CI will mimic natural hearing, you get feedback from adults here that have CI's. My guess is that you will get a mixed bag of responses ranging from one side of the spectrum to the other...........

That's the mains thing... the feedback is from adults that got CI at later age. Little is known about children's experience who have had CI all their life. My daughter knows only the sounds she can hear. There's no comparison to "how it should sound" like later-deafned people can. They might be different that what we hear, BUT when I say a word that she has to repeat, she repeats it correctly.

Mind you, People that were hearing and after a period of deafness choose for CI comment on the metallic sound. But it seens to be transformed by the brain using the old sound-map. After a period of time they recognise "the wife's voice" without problems. The brain is a powerfull tool.
LIke they sometimes say... CI is 5% technology, 95% working.

..........

I only wish that in our situation I had more time to make the decision. I wish that there were more information available. I hope that parents faced with this decision today, stop and get all of the facts before moving forward. There is far more information and experience out there now than there was just 10 years ago. And don't just go on what the doctors recommend. Look into all aspects. Get opinions from as many sources as you can and especially from those in the deaf community. While for the sake of development, time is of the essence, please remember, this is not a medical emergency..........

Perhaps it's a cultural emergency?

 

[rockdrummer]

..........Perhaps it's a cultural emergency?

Cloggy, you have good results and I am very happy for that. Not everyone will have the same experience you had. People need to be aware of the fact that this might not work for their situation as it did not work in ours.

I would hope that anyone faced with this decision doesn't feel pressured to decide based on his or her feeling this is some sort of an emergency. Remember an emergency is something that requires immediate action. Please to explain what is a cultural emergency. What could there possibly be in our (or any) culture that would require such immediate action? The point I was trying to make is to not rush into a decision. Using terms like emergency only implies that one should take immediate action and I would never condone that. If you don't mind, could you share with us how long it took to make the decision and what did you factor into it? What were your sources and did you ever find any information on success statistics?

 

[Cloggy]

Cloggy, you have good results and I am very happy for that. Not everyone will have the same experience you had. People need to be aware of the fact that this might not work for their situation as it did not work in ours.

I agree, there are factors that decide the succes and I do not want to give the impression that it allway's work. I have read about your situation, and it's important that that comes across.

I would hope that anyone faced with this decision doesn't feel pressured to decide based on his or her feeling this is some sort of an emergency. Remember an emergency is something that requires immediate action. Please to explain what is a cultural emergency. What could there possibly be in our (or any) culture that would require such immediate action?

Emergency is exaggerated in a way, since we think in day's, not years. But in another way, there are emergencies. Your son had 1 chance because of ossification. That's an emergency. In my case, there was no hurry EXCEPT that research shows that the results are better when the implant is done early. So, not an emergency as such, but a delay of years will thang, or at least affect the outcome.

The point I was trying to make is to not rush into a decision. Using terms like emergency only implies that one should take immediate action and I would never condone that.

I agree. All sides have to be viewed and understood.

If you don't mind, could you share with us how long it took to make the decision and what did you factor into it? What were your sources and did you ever find any information on success statistics?

The decision took about 3 months, based on doing research on the WWW. But more important are factors:
Factor: Our whole family is hearing. We wanted her to grow up being able to talk to everyone by speech and wanted her to hear.
Factor: Norwegian government offers the CI. (At 1 side at that time) This means we did not have to decide financially, which is a good thing. We investigated the best opions for bilateral later and found out that Cochlear offers the second one - but not the operation) Then, just before the operation they offered us bilateral in one and the same operation.
Factor: CI means she would probably not benefit from stem-cell research and techniques. This would be in the future, and it was essential to us that she would start ASAP.
There's more, but I have to go. Please ask.

 

[neecy]

From what I understand, assisted hearing with a CI is nothing like the natural hearing that you and I have. A person with a CI may not even be able to enjoy music. For some it may even be painful. It depends on so many variables.I think that for most this is true. And I would suggest that if anyone is under the impression that a CI will mimic natural hearing, you get feedback from adults here that have CI's. My guess is that you will get a mixed bag of responses ranging from one side of the spectrum to the other.

Well I can interject here as I believe I can offer some perspective. I went deaf when I as 9, and so I had the "memories" of what things sounded like before. After I had my CI activated, (I wear the Freedom) I was absolutely AMAZED at how real and natural-sonding everything was!!! Voices were the same as I remembered them (particularly my Parent's voices.) Music was *WONDERFUL* (I was listening to music from the third day I was activated and listen to it every day now!), I can hear the birds in the trees, the laugh of a child, so many things sound exactly as I remembered them sounding.

YES, some are different. The higher-pitched sounds aren't as normal for me because I intentionally have 4 electrodes switched off and those are the higher pitches.

The thing is - even if it ISN'T "exactly what a normal hearing person hears" you LEARN to take the sound and MAKE IT YOURS. Your brain is an amazingly plastic organ - it can LEARN to take what it hears, and adapt so that you can understand that "this sound means this."

I know my experiences aren't normal (My audie expressed to me that I was learning to understand language faster than most ), but I can say that there are MANY things that sound perfectly normal and natural with my CI. Its not a world full of faked, synthesized, robotic sounds. What I hear is beautiful.

 

[rockdrummer]

I know my experiences aren't normal (My audie expressed to me that I was learning to understand language faster than most ), but I can say that there are MANY things that sound perfectly normal and natural with my CI. Its not a world full of faked, synthesized, robotic sounds. What I hear is beautiful.

Neecy, that is wonderful for you and as I mentioned, there are probably stories from the entire spectrum. I am curious if the decision for the CI was your own or your parents. And even though I probably know the answer, are you happy with the decision regardless of who made it?

Thank you!

 

[deafdyke]

While for the sake of development, time is of the essence, please remember, this is not a medical emergency..........

*nods* Yes! It is important to implant kids relatively early......BUT some of the pro-early implanters make it seem like IF YOUR CHILD DOESN"T GET IMPLANTED WITHIN AN HOUR OF DX, they are going to not develop normal speech!

 

[neecy]

Neecy, that is wonderful for you and as I mentioned, there are probably stories from the entire spectrum. I am curious if the decision for the CI was your own or your parents. And even though I probably know the answer, are you happy with the decision regardless of who made it?

Thank you!

I made the decision myself, I am 34 and I have ZERO regrets.

 

[rockdrummer]

I made the decision myself, I am 34 and I have ZERO regrets.

Thank you Neecy. When I started this thread I posed a question to parents that have decided to get their children implanted. It would be appropriate to the conversation to include folks that have CI's to share the decision process as well. If you have a CI please to share with us when the decision was made (i.e. how old were you), who made the decision and the reasons the decision was made. I haven't seen much feedback from parents but I know there are a lot of CIers here.

Thank you all for your insight. And thanks for getting this thread back on topic.

 

[Cheri]

Thank you all for your insight. And thanks for getting this thread back on topic.

"Thanks for getting back on topic?" Your topic asked, "Why adults choose CI's for their children", How is an adult with CI discussion is getting back to your topic? Like I said in another thread, Nobody sticks with the point of anyone's topic, everyone goes off topic from time to time.

 

[Cloggy]

"Thanks for getting back on topic?" Your topic asked, "Why adults choose CI's for their children", How is an adult with CI discussion is getting back to your topic? Like I said in another thread, Nobody sticks with the point of anyone's topic, everyone goes off topic from time to time.

Cheri's right!!

 

[rockdrummer]

"Thanks for getting back on topic?" Your topic asked, "Why adults choose CI's for their children", How is an adult with CI discussion is getting back to your topic? Like I said in another thread, Nobody sticks with the point of anyone's topic, everyone goes off topic from time to time.

Don't be confused. Simply put, getting off topic is counterproductive to the conversation. I understand that this happens but the direction this thread was heading would have offered nothing constructive. I know my reasons for starting this thread and I have echoed them several times here. I don't care to repeat myself yet again. Just read my previous posts in this thread to understand it. And an adult with a CI is on topic if their parents chose for them. If my memory serves me correctly, Cloggy and I have been the only ones so far that are in this situation. To keep in the spirit of the thread, I am soliciting CI users about how their decisions were made. So it is still on topic.

Thank you for your opinion.

 

[rockdrummer]

Cheri's right!!

She might be right about the reality of some threads (I mainly see it in CI discussions) but that doesn't make it right. Below quote from Alex an Administrator. I am sure there are many compelling reasons to stay on topic.

Anther subject matter comes to attention for which there have been cases where off-topic posts is being carelessly done so. Several off-topic posts with an explaination or reason for doing so is fine while other posts that tends to stray far away from the topic in the thread is not only unneccessary, but could be considered rude in part. These type of posts needs to be forwarded to the moderators' attention so we can remove those posts. Members who invariably keeps posting off-topic posts constantly without due respect will be warned, after the third warning in relation to off-topic posts, a temporary ban will be implemented. Once again, off-topic posts noting a viable (good) cause and reason (intention) for doing so will be honored and excused. Members created threads for a purpose, let's stick to the topic for which the thread is concerned with.

 

[Foxrac]

Let me to break in some figures that 95% of parents that not want their children to have cochlear implants and other 5% of parents want their children to have cochlear implants because they think that cochlear can help cure their hearing loss, can talk and successful in the world. That's bullshit.

 

[neecy]

Let me to break in some figures that 95% of parents that not want their children to have cochlear implants and other 5% of parents want their children to have cochlear implants because they think that cochlear can help cure their hearing loss, can talk and successful in the world. That's bullshit.

Can you tell me where you get these figures? I'd like to see the documentation that backs up statitics like these.

There is a parent here on the forum with a 3 year old implanted daughter who can talk, who can understand speech, who can hear him talk to her when he's not even in the same room, who can listen to music, and talk on the phone. I'd call that pretty successful to me. How is that bullshit?

Why the negativity and fear, TrippLA?

 

[Liebling:-)))]

Well I can interject here as I believe I can offer some perspective. I went deaf when I as 9, and so I had the "memories" of what things sounded like before.

Now I understand!!!! I was like when you label us as anti-activists or anti-CI in some threads because we disagree to implant babies to toddlers with CI. You WAS hearing for 9 years which different from us here and know from your experience as being hearing.

After I had my CI activated, (I wear the Freedom) I was absolutely AMAZED at how real and natural-sonding everything was!!! Voices were the same as I remembered them (particularly my Parent's voices.) Music was *WONDERFUL* (I was listening to music from the third day I was activated and listen to it every day now!), I can hear the birds in the trees, the laugh of a child, so many things sound exactly as I remembered them sounding.

2 former hearing guys, my hubby met at Reba clinic last year, said different as you. One of them lost his hearing to car accident and other lost his hearing out of nature. They both said that original hearing is TOTAL different as you hear with the help from CI...

Yes I aware that everyone are different.

The thing is - even if it ISN'T "exactly what a normal hearing person hears" you LEARN to take the sound and MAKE IT YOURS. Your brain is an amazingly plastic organ - it can LEARN to take what it hears, and adapt so that you can understand that "this sound means this."

I know my experiences aren't normal (My audie expressed to me that I was learning to understand language faster than most ), but I can say that there are MANY things that sound perfectly normal and natural with my CI. Its not a world full of faked, synthesized, robotic sounds. What I hear is beautiful.

It's wonderful to know that you WILLING to learn to hear something you really wants... Remember, everyone are different... Some don't want to learn anything...

Neecy's post
Can you tell me where you get these figures? I'd like to see the documentation that backs up statitics like these.

Why can't you listen person's own experience? I would not consider to listen websites but person who wear CI... It's them who have own experiences.

There is a parent here on the forum with a 3 year old implanted daughter who can talk, who can understand speech, who can hear him talk to her when he's not even in the same room, who can listen to music, and talk on the phone. I'd call that pretty successful to me. How is that bullshit?

It's disrespect what you said this to person who have bad experience with CI... I already said in my previous post to you...http://www.alldeaf.com/showpost.php?p=500787&postcount=12

Why the negativity and fear, TrippLA?

Please respect when everyone have their own experiences... You can't expect that everyone are same as you...


We choose to fulfil our children's wishes to have CI instead of do what we want for our children because we want our children knows we respect them as our children.

 

[neecy]

TrippLA said they wanted to bring numbers into play here and that 95% of parents don't want to implant their children, and the 5% that do, think that children who are implanted will be successful in the real world. While I agree with his comment that it doesn't "cure" deafness, I was curious a to where he got his numbers from. You said its based on personal experience - I can't see how he's talked to the parents of every deaf child in order to know what they want for their children.

And as to my comment about things sounding natural with my CI. I have a Freedom - which allows for greater flexability with regards to sound rendering software and more natural reception. I DID point out that was simply *my* experience, and that with time even if something doesn't sound 100% "normal" your brain learns to adapt to it over time.

 

[sr171soars]

...

And as to my comment about things sounding natural with my CI. I have a Freedom - which allows for greater flexability with regards to sound rendering software and more natural reception. I DID point out that was simply *my* experience, and that with time even if something doesn't sound 100% "normal" your brain learns to adapt to it over time.

That is quite true... I have noticed that myself. After a while the "different" noise sounds normal.

What makes this an interesting point is that no two people hear exactly alike anyway normal hearing or otherwise. The reason for this is that not everybody has the same exact number of cochlear hair cells, the physiology of the ear itself has subtle differences in outer, middle and inner ear, the brain's wiring (some people have a better grasp sound localization than others [think Radar O'Reilly on MASH]) and on it goes.

What's with sounding "natural" anyway? Do most people realize that nobody hears the sounds "as is" when it comes into the outer ear...those flaps of skin hanging on each side of the head? It all comes down to sound being converted into electrical signals for the brain to translated into what we call noise. The main difference between a CI and normal hearing is the amount of information one gets. The brain is one of the greatest signal processors that ever existed and it has the power to make up for some of the lack of information of a CI. I know I can get by very easily with what it gives me and whatever is lacking is totally irrelevant. If we are bogged down over the irrelevant part, then we all need to chill out.

 

[neecy]

One thing I find fascinating with regards to "what is really hearing anyway?" is as sr171soars pointed out - we all hear differently depending on our biological physiology, whether we are deaf or hearing. When I had my switch-on, we discovered that 5 electrodes (numbers 4 - 8) were causing a feedback situation that made my eye twitch. This was because sometimes there is a "bleed" of the electrical stimulation from the electrode array and it can irritate the facial nerve pathways too. So what we did was turn those 5 electrodes off, which happen to be at the higher-frequency end of the sound spectrum.

7 months later, we tried turning them on again - the facial nerve problem had disappeared (as the body naturally wraps proteins around the electrode array and that helps prevent bleed-thru) and wonder of wonders, after 7 months of NOT having that high pitched sound spectrum I discovered I didn't like it when it was re-added in!!! I went with just having electrode 7 added and the rest left out. So what I "hear" is not what you hear, or what a hearing person hears, or even a person with the same CI and the same program (ADRO). BUT, it works for me! I might try re-adding one electrode at a time, every 6 months rather than the whole passle at the same time and see if that helps me adapt to the higher pitch ranges, but even if I eventually chose to just keep those ones turned off, I'm happy with what I have. Even with hearing aids I preferred the lower tones over the high ones.

 

[rockdrummer]

Mr. sr17soars, Can I ask about how your CI decision was made? Was it you that decided or was it your parents and do you recall what drove the decision?

Thank you.