How to Decide on Cochlear Implant Surgery for Children

[jillio]

The FM system I had was annoying. I could not hear the kids around me. It shut me off from the world except the teacher. Funny how people say they want to teach speech so we can be part of the hearing and not in our little deaf world. That FM system did that to me. except recess but during recess it was very noisy so I was still shut out. you just can't win.

**nodding** Their so called solutions very rarely get the results they believe they do.

 

[jillio]

Oh, I am sure everyone understand what everyone is saying. I'm talking about bunch of hearing talking about deafness in a deaf forum

I apologize if that offends you. The deaf world has been a part of my existence as much as the hearing world (sometimes more) for 24+ years now. I always try to present the deaf perspective as I have been taught by deaf people.

 

[A]

no apology. It just reminds me of it that's all. continue on I just hope some hearing don't ignore us when we say something.

 

[jillio]

no apology. It just reminds me of it that's all. continue on I just hope some hearing don't ignore us when we say something.[/QUOTE]

I've been hoping that for 24 years now!

 

[rick48]

I was referring to the suggestion of miraculous as presented by the implant industry, and therefore, am not evading the question, but have indeed answered it completely and thoroughly. Personally, I have yet to witness a miracle in any capacity, but would assume it would be a restoration to full and complete hearing as would be compared to the hearing of one from birth without medical intervention. However, one man's miracle can also easily be another man's curse.

As the parent of one of the first children implanted in this country I can tell you from firsthand experience that no one connected with the "implant industry", not anyone from Cochlear Corp., not the implant surgeons we consulted, the audiologists we consulted nor the implant programs we interviewed and chose ever said or suggested that the cochlear implant was a miracle.

You are simply making things up and backtracking.

I have no doubt that you have yet to "witness a miracle in any capacity". but after being told that our child would not make it through the night after contracting meningitis my wife and I experience a miracle every day.

 

[jillio]

As the parent of one of the first children implanted in this country I can tell you from firsthand experience that no one connected with the "implant industry", not anyone from Cochlear Corp., not the implant surgeons we consulted, the audiologists we consulted nor the implant programs we interviewed and chose ever said or suggested that the cochlear implant was a miracle.

You are simply making things up and backtracking.

I have no doubt that you have yet to "witness a miracle in any capacity". but after being told that our child would not make it through the night after contracting meningitis my wife and I experience a miracle every day.

Making nothing up nor backtracking. And, again, this is not about the singular experience, but the collective. In other words, not about you, about the deaf.

Hey, A. This is one place you can be assured the deaf voice will be ignored.

 

[faire_jour]

Making nothing up nor backtracking. And, again, this is not about the singular experience, but the collective. In other words, not about you, about the deaf.

Hey, A. This is one place you can be assured the deaf voice will be ignored.

Are you saying that there are not thosands of stories of success just like Rick's daughter? I assure you that I have seen many. His is far from singular.

 

[jillio]

Are you saying that there are not thosands of stories of success just like Rick's daughter? I assure you that I have seen many. His is far from singular.

I am saying that he continually attempts to extrapolate his singular experience to the entire deaf community of CI users.

Are you saying that there are not tens of thousands who have not been able to achieve the level of benefit he claims his daughter has?

 

[deafdyke]

While it does filter background noise, it does nothing for the other things that interfere with discrimination

Ditto.It also cuts off dhh kids from what the hearing kids are saying.

Are you saying that there are not tens of thousands who have not been able to achieve the level of benefit he claims his daughter has?

faire_jour, you have to understand that rick's daughter had a REALLY good experiance with the CI. Meaning she didn't even deal with social issues (which are a HUGE HUGE thing in the oral deafcommunity) and wasn't in Resource Room and just had a bare bones IEP.
That's a pretty damn high level of acheivement if you ask me.
We're not saying the CI doesn't work....we're saying that the benifit varies tremendously for different people, and not everyone is going to be a minimally involved with special ed with no deaf voice and no spoken language delays.

 

[rick48]

I am saying that he continually attempts to extrapolate his singular experience to the entire deaf community of CI users.

Are you saying that there are not tens of thousands who have not been able to achieve the level of benefit he claims his daughter has?

There you go again just continuously attacking and making accusations to fit your continued obsession with the success any child has had with his or her cochlear implant. Must really eat at you that you did not make the similar choice years ago when you had the opportunity.

Anyone who has been involved with the cochlear implant community knows full well that not all derive the same benefit from the cochlear implant and unfortunately there are those, for a myriad of reasons, who have derived little or no benefits from the cochlear implant. However, there are indeed many, many children who do and continue to do so on a daily basis.

I do not need to extrapolate my child's experiences and success with her cochlear implant to others as her success is not unique but rather, the norm. But above all, it is not singular.

Really have to wonder why a hearing person who does not have a cochlear implant thinks she can speak for the Deaf and especially those children with cochlear implants? You have no clue what we, as parents, have experienced in raising a child with a cochlear implant and absolutely no clue as to what our children have experienced. You try to talk the talk but you have never walked the walk.

 

[jillio]

Blah, blah, blah.

 

[faire_jour]

I am saying that he continually attempts to extrapolate his singular experience to the entire deaf community of CI users.

Are you saying that there are not tens of thousands who have not been able to achieve the level of benefit he claims his daughter has?

No, I do not believe that there are tens of thosands of people implanted as young children who do not receive spoken language benefits from their implants. Not everyone gets the same benefit, but I do not believe that tens of thosands of people implanted as young children are unable to access spoken language through listening. Yes, it depends on cause of hearing loss (so if they have abnormal cochlea, ossification, etc, it is different) and age of implantation (before 18 months is best) and follow up (bad parents who don't do follow up, or not using the CI) but if you have all the pieces, not getting benefit is rare.

 

[faire_jour]

Blah, blah, blah.

Do you disagree that you do not have the first hand experience (or second hand even) of having a cochlear implant in your daily life?

 

[faire_jour]

Ditto.It also cuts off dhh kids from what the hearing kids are saying.
faire_jour, you have to understand that rick's daughter had a REALLY good experiance with the CI. Meaning she didn't even deal with social issues (which are a HUGE HUGE thing in the oral deafcommunity) and wasn't in Resource Room and just had a bare bones IEP.
That's a pretty damn high level of acheivement if you ask me.
We're not saying the CI doesn't work....we're saying that the benifit varies tremendously for different people, and not everyone is going to be a minimally involved with special ed with no deaf voice and no spoken language delays.

I agree with Rick that his experience is the norm of early implanted kids. It is certainly the average that I have seen.

 

[jillio]

No, I do not believe that there are tens of thosands of people implanted as young children who do not receive spoken language benefits from their implants. Not everyone gets the same benefit, but I do not believe that tens of thosands of people implanted as young children are unable to access spoken language through listening. Yes, it depends on cause of hearing loss (so if they have abnormal cochlea, ossification, etc, it is different) and age of implantation (before 18 months is best) and follow up (bad parents who don't do follow up, or not using the CI) but if you have all the pieces, not getting benefit is rare.

And exactly how much empirical research would it take to convince you?

 

[jillio]

Do you disagree that you do not have the first hand experience (or second hand even) of having a cochlear implant in your daily life?

Yes, I disagree with that statement. I have implant users in my life on a daily basis. More than a single child. A wide variety of implant users, of a variety of ages, etiologies, age of implant, and results.

 

[faire_jour]

And exactly how much empirical research would it take to convince you?

Once piece done in the last five years.

Actually, I'm exaggerating because it would take more than one. I have read many that show that kids get tons of language benefit from CI's. So, maybe 10....

 

[rockdrummer]

yep. I guess beautiful speech is like music to people's ear. I have speech, but I don't sound beautiful to them. No wonder they laugh and mock me. It's the beautiful speech they only care about.

How old are you or the people that mock you? Sounds like an immature group to me.

 

[rockdrummer]

I did read the whole post as it was posted.

Some children have, some children haven't. I have always conceded that. Where we part ways is in the fact that you refuse to concede that very few achieve miraculous results, and that you cannot extrapolate a singular experience (particularly a second hand singular experience) into a universal for all.

I don't think anyone can and I have always said that one size does not fit all. Some will gain benefit and some will not. Even though the medical community will push for the pathalogical solution I don't think even they would try to predict an outcome. At least that was not my experience.

 

[rockdrummer]

What is a "miraculous" result?

I think that the key is hearing better than they did with hearing aids. I would say almost all get that benefit.

Almost all might be a stretch. There are also those that gain no benefit.