A Deaf's View Regarding CI

Well, to be fair, so far it appears many people like their CIs even though I'm seeing a lot of references to headaches and migraines.
Then there are some parents who are talking about how much their young kids hated the CIs and refused to wear them (maybe because of headaches/pain/not liking how the sound vibrated in their heads) and how they get so upset with their kids which made me wanna comment "well, maybe you should take that as a hint to stop forcing it".
I am more interested in their psychological well being years later than whether or not they like their CIs or the problems they had with their CIs...that's what I am trying to find out.
I was the poster child in Canada for the Oral Deaf back in the 70s and early 80s. I was on tv shows, magazines, the news, newspapers. I was considered a huge success. I spoke very well, lipread very well and did very well in school.
And because everyone made such a big deal out of how well I was doing, I didn't have the courage to tell them that I was utterly miserable.
So, GrendelQ, we're going to likely run across each other again here on AD - I am anti-Cis in babies and young kids. That's my personal view so you will probably find some posts of mine in the future that will clash with your views but keep in mind that I do acknowledge you are a mother who wants the best for her child so I do respect you for that and I'm glad you're giving your child both worlds.
 
Not enough time as passed to actually have longitudinal results on childhood implantation.

The studies I have seen all indicate that the implanted children that are doing the best academically and socially are those that have access to sign language. And that the early gains shown in language acquisition level off and then fall behind their hearing peers
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So in other words while severe and profound spoken language delays are now rarer then they used to be, orally trained kids still hit the fourth grade glass ceiling right? One of the reasons I dislike the oral approach is that it treats itself as the be all and end all that a dhh kid needs. There is NOTHING wrong with oral training. It's a very useful skill. I think most kids can significently benifit from oral training and learning to talk. But, I also think that oral only seems to brush under the rug, the fact that a lot of oral kids start really struggling around fourth grade. I would love it if oral preschools suggested to parents about looking into ASL as a second language program. Yes, traditionally hoh kids have been the most oralized and most mainstreamed kids.....but that doesn't have to be the case. I know many members here who went to oral schools for preschool and kindergarten and then went to Deaf programs. I do have to say that it doesn't surprise me that the kids who do best academicly and socially, are the ones who have ASL abilty. (and oh GOD, at the Clarke School Mainstream conference, I wanted SO badly to go " Your kids don't need to learn to go boo be bah better. They can hear and speak already. Use ASL and Deaf Ed now! They were basicly parrotting the exact same shit that they were when me, Shel90 and bajagirl
were in the system :roll:)
ASL is going to be the Deaf Ed's Braille. Braille is highly identified with Blind Ed. Guess what? Using it is controversial. My friend Kevin went to Perkins (which really really really sucks....damn, if you think that the Deaf School system is bad...you need to look at Blind Ed. There's only one good blind school. A lot of states have closed their blind schools, enrollement is really dwindling etc) and he didn't even get to become fluent in Braille. Back when he was at Perkins, they were pushing books on tape. Back in the 60's 50% of blind kids learned Braille. Now it's only 10%. The kicker....unemployment in the blind community is sky high.....but of those who are Braille literate, they have a very high rate of employment!!!!! Makes you think!
 
I am more interested in their psychological well being years later than whether or not they like their CIs or the problems they had with their CIs...that's what I am trying to find out.
I was the poster child in Canada for the Oral Deaf back in the 70s and early 80s. I was on tv shows, magazines, the news, newspapers. I was considered a huge success. I spoke very well, lipread very well and did very well in school.
And because everyone made such a big deal out of how well I was doing, I didn't have the courage to tell them that I was utterly miserable.
So, GrendelQ, we're going to likely run across each other again here on AD - I am anti-Cis in babies and young kids. That's my personal view so you will probably find some posts of mine in the future that will clash with your views but keep in mind that I do acknowledge you are a mother who wants the best for her child so I do respect you for that and I'm glad you're giving your child both worlds
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DeafCaroline, GOOD POINT!!!!!! Grendel you ARE raising your kid the right way. We are NOT criticizing you at ALL. I mean...functionally hoh with CIs, and fluent in both ASL and spoken English AND attending a Deaf school. That rocks!!!!!! But, I do think that one thing that really isn't addressed adqautly is the psychological effect that therapy, therapy therapy and even more therapy has on a dhh kid. Yes, Li Li learned spoken language the way I did, and the way a hoh kid did...without really intense AVT training. She just got oral intervention via a DEAF SCHOOL!!!!
As well as the psychological effect that solotaire mainstreaming has on a dhh kid. Seriously.....I do think that solotaire mainstreaming after a few years in a dhh program is a LOT better then solotaire mainstreaming, the way DeafCaroline and me and Bajagirl and shel90 did. THAT type of mainstreaming is HORRIBLE...and is sadly VERY common. We're not pro deaf school b/c of some misplaced loyalty. We are pro deaf school b/c we see the damage that kneejerk mainstreaming causes...and that's not just academic....it's also psychological. When I vended at the Clarke School Mainstream conference there were all these kids who were OK academicly, but were suffering majorly socially....and that is a HUGE HUGE area of concern. Social issues ....random mainstreamed dhh guys iming me b/c they want a girlfriend (yes even with my screenname?!?!) Social issues are the backbone of sucess in the world, as well as key to getting a good job. Yet so many of us mainstreamed and oral kids never managed to make it socially, except a bit superfically in the hearing world.....and that is still going on. Ask jillo, ask shel90, ask bajagirl.
Ask me. Hell, I just finished an article for my syndrome's newsletter about how kids with disabilties should AVOID being mainstreamed in middle and high school b/c its so so bad! I know you're seeinga lot of impressive stuff....but bear in mind that Li Li's age group is still young. I have a feeling there's going to be a HUGE migration back to Deaf Schools around middle and high school b/c of major social emotional issues.
 
I am anti-Cis in babies and young kids
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DeafCaroline, what age would you accept implantation? I have heard of toddlers being asked if they want a CI....and I do think that's an AWESOME way to handle it. I do think that it's very difficult to tell how well a baby can hear. Especially now that they're implanting babies and young kids with losses where they do get some benifit from hearing aids?!?! Even ABR can be effed up. On the other hand, there is a type of loss called auditory nereopathy that can be dx by ABR, and cannot be helped by hearing aids at all. Also, you do have to admit that there ARE a lot of deep profound losses, where even super power hearing aids cannot help. I do think there's some shades of gray in the CI debate.
 
But... How would you explain a toddler what a CI is???? "A tool to hear better"? But that's not true, I mean, it may not work that fine...

Plus that can be done with a toddler who has no language delays (sign language since birth). A deaf child born from hearing parents is not likely to be in that situation...

I don't think is right to make the child choose, they can't have the instruments to understand the implications of their choice. You can check their feelings about it and treasure them, but it's parent's choice. And you'll never be sure it was "right"... Sliding doors.
 
DeafCaroline said:
Well, to be fair, so far it appears many people like their CIs even though I'm seeing a lot of references to headaches and migraines.
Then there are some parents who are talking about how much their young kids hated the CIs and refused to wear them (maybe because of headaches/pain/not liking how the sound vibrated in their heads) and how they get so upset with their kids which made me wanna comment "well, maybe you should take that as a hint to stop forcing it".
I am more interested in their psychological well being years later than whether or not they like their CIs or the problems they had with their CIs...that's what I am trying to find out.
I was the poster child in Canada for the Oral Deaf back in the 70s and early 80s. I was on tv shows, magazines, the news, newspapers. I was considered a huge success. I spoke very well, lipread very well and did very well in school.
And because everyone made such a big deal out of how well I was doing, I didn't have the courage to tell them that I was utterly miserable.
So, GrendelQ, we're going to likely run across each other again here on AD - I am anti-Cis in babies and young kids. That's my personal view so you will probably find some posts of mine in the future that will clash with your views but keep in mind that I do acknowledge you are a mother who wants the best for her child so I do respect you for that and I'm glad you're giving your child both worlds.
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Did you have any deaf friends at all? Maybe it would have helped if you did. Cause that although I went mainstreaming I still had some deaf friends that I occasionally saw on weekends and so forth.
 
messymama said:
But... How would you explain a toddler what a CI is???? "A tool to hear better"? But that's not true, I mean, it may not work that fine...

Plus that can be done with a toddler who has no language delays (sign language since birth). A deaf child born from hearing parents is not likely to be in that situation...

I don't think is right to make the child choose, they can't have the instruments to understand the implications of their choice. You can check their feelings about it and treasure them, but it's parent's choice. And you'll never be sure it was "right"... Sliding doors.
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Messymama, there is no either / or choice between a CI and ASL, LIS or any other sign language -- one is a tool that can provide access to sound, one is a language. One does not preclude the use of the other.

But when it comes to the decisions we do have to make for a child, there are so many things we must choose without awaiting their age of reason, including where to live so our child will be secure, what to feed him so he will grow healthy and strong, what language to use so he can communicate fully and with ease, where and how to educate him initially so he will learn how to learn on his own. For a deaf child who does not benefit from HAs today, you make a choice for your child about getting a CI -- whether that is to pursue a CI or not.

You can look at it in different ways and I respect decisions made either way -- I know that no two children, no two families are alike. The situation is different for many families, but in my case, my child was already immersed in ASL, it was the primary language in use -- haltingly, but actively -- in our home. Our decision was whether or not to also provide access to sound, and thereby the ability to communicate using spoken languages. We made a choice to get a CI when she was nearly 2, and my daughter delighted in sound from the very first day of activation. Today, every day, it's her choice whether or not to wear her CIs. She decides whether the book we choose to read at night is in French or English, she decides whether or not to wear her CIs on any given day, at any point in time. She spent the first 2 hours of the day today without CIs, and then at one point reached over and placed a CI on her head, choosing to switch from ASL to English and back again, repeatedly, and in the middle of a conversation, likely just because she could.

We made a decision early on so she has choices to decide between now and in the future. We have not limited her or closed doors in any way by making this decision.
 
Grendel, I have no intention to say one way o another can be wrong, or that you can't do both (SL and CI). I'm just saying that, like many other decisions we parents have to make, you can't say "what would it be if... ?". You gave her all the tools and that's wonderful, but in the end, it will be up to HER to say if she actually had all she needed, when she'll be grown up. Same with my son... One day they will be teenager, then adults, and will have to cope with their parents' mistakes, and I think it's right this way. Our decisions: I think we both agree on that! Saying "let them decide when grown up" has little sense, since that can be another decision, but early intervention is one thing, late intervention is another thing. If you choose to wait, you indeed make a choice anyway.

If I was able to ask my toddler if he wants CI, anyway, I'm sure I would get a firm "NO". Unless they make a cover for CI with Lightening McQueen on it :lol: He accepted HAs... But only because he loves me. He doesn't care about sound at all. Like you said... No two children, no two families are the same!
 
I had no deaf friends at all growing up. My mother was told to keep me away from the deaf community so I would learn only speech because if I also learned ASL and had deaf friends, I wouldn't try as hard to speak well to fit in at the "normal" school.
 
deafdyke said:
DeafCaroline, what age would you accept implantation? I have heard of toddlers being asked if they want a CI....and I do think that's an AWESOME way to handle it.
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I don't think it's responsible of an adult to put such decisons in a toddler who is still wearing diapers. how can they begin to understand what a CI entails and the risks involved?

I saw documentary a long time ago about parents who had to decide the sex of their babies who were born with both female and male genitalia - hermaphrodites and the consequences that had on the child. Some parents said 'make the baby a girl" not knowing that they just turned someone who is very much a boy into a girl (or other way around) and the far reaching consequences of such decisions.

The lesson I learned from that is it's not my place to make such huge life altering decisions for my own child because what if it was not what they want? I would wait till they were old enough to be able to understand and grasp intellectually what a CI implantation would entail. I would say around 4th, 5th, 6th grade, if they made it clear that they really want a CI, I would support them 100%.
 
DeafCaroline said:
The lesson I learned from that is it's not my place to make such huge life altering decisions for my own child because what if it was not what they want? I would wait till they were old enough to be able to understand and grasp intellectually what a CI implantation would entail. I would say around 4th, 5th, 6th grade, if they made it clear that they really want a CI, I would support them 100%.
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But deafcaroline, it IS the place, and the responsibility of every parent to make huge life altering decisions for his or her child. When and what children eat and drink, where and how they live, what and how they communicate and learn. You must make these decisions repeatedly throughout your child's life.

Would you really wait until your deaf child is in 4 th, 5 th grade to discuss and decide whether or not to use ASL as a primary language when he could have been immersed for 10, 11 years, learning naturally and having full command of that language throughout those years? Or would you make that life altering decision as soon as you knew he was deaf and provide full access to ASL in his home and school?
 
For a C.I, auditory input and learning become dramatically less effective and beneficial at 10, 11 or 12 years old than when done at several months old to 3 years old or so. The development of the brain is rapid when it comes to responding to stimuli and learning about the environment at such a young age when compared to 10 or 11 years old.
 
kokonut said:
For a C.I, auditory input and learning become dramatically less effective and beneficial at 10, 11 or 12 years old than when done at several months old to 3 years old or so. The development of the brain is rapid when it comes to responding to stimuli and learning about the environment at such a young age when compared to 10 or 11 years old.
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You're right. That's why they say CI implantation is most effective in late-deafened and in deaf children before age 4.

It's pretty fascinating to read some personal blogs - what they were able to hear - one woman wrote she could hear her cat licking her paw.

Yet as I browsed through their stories, certain things kept jumping out at me such as "thank god my mother sheltered me from the deaf community and their radical anti-CI ideas...I consider myself hearing because I can do everything a hearing person can do...my CI broke down today and it was awful, I couldn't hear anyone...I play music just like hearing people..."

Reminded me of me when I was young - I played the recorder very well to prove I could do anything hearing people could do, and when my hearing aid batteries died and I didn't fresh ones on hand, I was not happy at all for I knew it would make hearing people be more impatient with me if I didn't catch what they were saying and I did think I was very lucky not to be "deprived" like "them deaf people."

And I was never allowed to call myself deaf - I was told to tell people that I was hard of hearing or hearing impaired". The word deaf had such negative connotations back in the day.

By the time I was about 16 or 17, all those years of frustration and anger caught up with me. That was when I realized the hearing world had no freaking clue what's best for me. They're not deaf. So I became very rebellious and extremely resentful of hearing people telliing me I'm so lucky I could speak. Whenever they said that, I had to force a smile on my face and say thank you while inside my head i was thinking "lucky? yeah right. "F" off."

So, I am very resistant to hearing parents sending a message to their kids how "lucky" they are to be able to "hear" and that it's much better that way.
 
I can't imagine hearing parents telling their deaf/hh children on how lucky they are to be deaf anymore than parents telling their vision impaired children on how lucky they are that they're blind or that their sights are limited.
 
kokonut said:
I can't imagine hearing parents telling their deaf/hh children on how lucky they are to be deaf anymore than parents telling their vision impaired children on how lucky they are that they're blind or that their sights are limited.
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I have told my daughter she was lucky.
 
kokonut said:
I can't imagine hearing parents telling their deaf/hh children on how lucky they are to be deaf anymore than parents telling their vision impaired children on how lucky they are that they're blind or that their sights are limited.
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You're missing the point but whatever.
 
DeafCaroline said:
You're missing the point but whatever.
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I understand perfectly. I'm just saying that I can't imagine *hearing parents* would say that. Perhaps they may say it in terms of "Look at this way, you have some advantages of being deaf!" Lucky to not see or hear? No.
 
GrendelQ said:
But deafcaroline, it IS the place, and the responsibility of every parent to make huge life altering decisions for his or her child. When and what children eat and drink, where and how they live, what and how they communicate and learn. You must make these decisions repeatedly throughout your child's life.

Would you really wait until your deaf child is in 4 th, 5 th grade to discuss and decide whether or not to use ASL as a primary language when he could have been immersed for 10, 11 years, learning naturally and having full command of that language throughout those years? Or would you make that life altering decision as soon as you knew he was deaf and provide full access to ASL in his home and school?
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You're right, parents have to make decisions for their young kids, that's their job as parents but do I think I have the right to surgically alter my child for a non-emergency or even health reasons? No. And why would I discuss with them at age 11 whether they should use ASL as their primary language when it should already be their primary language as a deaf person?
 
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