Son's CI surgery

[momtotoes]

Thank you everyone for all of the great advice! It is very difficult to sort it all out. I am trying to stay fairly neutral at this point.

So, don't mind me if I sit back and take it all in for awhile.

And, I apologize to Fragmenter for kind of taking over this thread.

 

[momtotoes]

there are some on here that are against implanting babies and toddlers and some seem to think that there are hearing parents out there that are just saying, "Let's implant our son/daughter" without any thought to the fact that surgery is involved.

I do want to comment on this...

My husband and I have been in contact with tons of hearing parents of children with and without CIs.

And there is only one family we have met that did not go through a very difficult decision making process before deciding on a CI.

And that family annoys the living heck out of me.

It was a heartwrenching decision to hand our daughter over to someone we had only met a half dozen times and tell him to do this surgery.

We stand by the decision and know it was the best one we could make for her. But it definitely was not come to lightly.

That being said... I have to admit, that as soon as it became apparent that Erin was in fact deaf, I immediately jumped online to read about this "thing" I saw on an old episode of ER. In my limited understanding at that time, I saw it as a cure for deafness. A way to correct the problem and make it go away.

But it only took 1/2 hour of research to find out that was not the case.

In my area of the country, you can't even go ahead with a CI for your child unless you have been counseled on the opinion of the Deaf Culture on CIs.

We were led on a path of NOT receiving a CI by the state Regional Infant Hearing Coordinator. Even the surgeon was pretty laid back about it in the beginning.

I guess what I am saying is that I seriously doubt the vast majority of parents go ahead with a CI for their child strictly based on what the surgeon says.

Like I said, I have only run across one.

 

[deafdyke]

Cloggy, I am not talking about IQ in general. I am talking about VERBAL IQ. Verbal IQ measures how well a person has mastered a language. I remember from Journey to the Deaf World that deaf ( BOTH oral and sign using) adults (that is adults who have been dhh for most of their lives) and kids tend to have lower verbal IQs then hearing people. (and yes, I know that Journey to the Deaf World isn't exactly pro-CI, and is pro Deaf seperatist, but if I recall correctly, it was a footnoted stat)
Hey, I'm not saying that ALL CId kids just pick up very basic English skills. But the fact of the matter is that there's really no stats out there that say that CI kids are now performing at a rate equal to their hearing peers, in the area of spoken language. Yes, there's info out there about clearer speech.....but what about vocabulary and syntax? I'm just wondering why those stats aren't out there. I mean the CI has improved so that some kids are doing really really well! Why right here we have Liliysdad, who says that Lillys doing so well that she might not even have to go to the actual school at CID! But that doesn't mean that EVERYONE with it is doing well. Even over at Hearing Exchange, they admit that sucess with CI is very very variable.
Just like hearing aids, CI produces different results for everyone.......I mean I bet one of the oral experts would display me as an example of an oral sucess, since I have a very verbose vocabulary......but not everyone who's dhh has the abilty to use sophisticated language.
Cloggy, you misunderstand me............I am not anti CI....Simply anti audist.

 

[deafdyke]

I am trying to stay fairly neutral at this point.

Definitly! I actually think that most dhh kids should do a TC style approach first, so that the parents and therapists can figure out easily which language is the "best fit"....Some kids have apraxia or have other conditions that inhibit speech, others may have a condition where they can't process ASL syntax!

 

[Cloggy]

.....
Cloggy, you misunderstand me............I am not anti CI....Simply anti audist.

No I don't. I know you're not anti CI....I know you're anti audist. So am I.!!

We just have a different view of the glass filled halfway.

 

[deafdyke]

Cloggy, I do admit that there are some kids doing extremely well with CI...I am NOT saying that most CId kids only pick up very basic speech skills. Just saying that end results vary tremendously. Just like with hearing aids. Some people are amazing hearing aid users, others can only pick up a percentage of speech.......some can only hear enviromental sounds and so on......
I do know off the top of my head that there are still implanted kids who still NEED TC, even thou they were orally educated or had early intervention. I mean I do know that even today, the doctors and experts aren't really sure why one person can be functionally hoh or "almost hearing" with CI, and why another person might only get eniviromental sounds
Maybe too it's a cultural difference...... Like in your country, you guys have socialized health care. Here it's 100% for profit.

 

[Cloggy]

.........................
Maybe too it's a cultural difference...... Like in your country, you guys have socialized health care. Here it's 100% for profit.

That's a totally unfounded remark which you shouldn't make. It contaminates your arguments...

But again... I see the glass half full, you see it half empty.

I would love to see the results divided in deaf/CI children of hearing parents and deaf/CI children of d/Deaf parents. And then, early implanted......
I expect these results will show a lot..
But there are not enough people yet to do a good study. Any result showing the positive effect is attacked due to the limited amount of people..

 

[momtotoes]

Can't we just all get along?

(tee, hee!)

Listen....

I have to say a few things.

It seems there are a lot of conflicting opinions and feelings on what a hearing parent of a deaf child should and should not do.

My husband and I have a lot to learn. And we know our opinions will change over time. And will likely contradict each other.

BUT.... there are a few things we feel so strongly about that no one will sway our opinion.

These are:

We refuse to "not expect much" from Toes's CI.

We refuse to settle in any way, shape or form when it comes to our Toes.

If that means we will need to fight our asses off to get her the therapy (in whatever form) to help her develop the ability to communicate in MAINSTREAM CULTURE, then so-be-it.

That is what we intend to do.

for listening.


And Have A Nice Day.

 

[Lillys dad]

Very well said! You will do what is best for YOUR family. At the end of the day the only people you have to answer to are you and your family. You do what is right for you and yours.

 

[deafdyke]

Cloggy, no I don't..........it's not as black and white as you're making it seem.
There are kids who are doing REALLY well. Some of them are just average kids. More kids are developing more sophisticated spoken language. I mean the days of many "oral" toddlers having only a handful of spoken words, is pretty much a relict of history. BUT just b/c they can speak better, it does NOT mean that their speech is perfect. Most of them will still have to have many many hours of speech and language therapy. I'm just saying that it's pretty much a fact that you really can't generalize all that much about CI performance. It's just like.....say some people LOVE their digital aids, but you really can't say that digital aids are the best for everyone!

 

[Cloggy]

Cloggy, no I don't..........it's not as black and white as you're making it seem.
......................................I'm just saying that it's pretty much a fact that you really can't generalize all that much about CI performance. It's just like.............

I agree.
I see lots of children that do very well with CI and speak normal. Children 10-15 years old of which their teachers don't realise that they are deaf with CI. Perhaps looking from this perspective, it's difficult to see the children that are doing bad... they are too far away.

You see all these children that do bad and don't have speech that is "normal". From that perspective it might be difficult - just like with me - to see in the distance and see the children that do really well.

Both of us see the children inbetween these groups...
Matter of perspective...

 

[Cloggy]

Can't we just all get along?
...........

We are getting along...
and learning in the process.!!

 

[LisaMarie]

Cloggy, I am not talking about IQ in general. I am talking about VERBAL IQ. Verbal IQ measures how well a person has mastered a language. I remember from Journey to the Deaf World that deaf ( BOTH oral and sign using) adults (that is adults who have been dhh for most of their lives) and kids tend to have lower verbal IQs then hearing people. (and yes, I know that Journey to the Deaf World isn't exactly pro-CI, and is pro Deaf seperatist, but if I recall correctly, it was a footnoted stat)
Hey, I'm not saying that ALL CId kids just pick up very basic English skills. But the fact of the matter is that there's really no stats out there that say that CI kids are now performing at a rate equal to their hearing peers, in the area of spoken language. Yes, there's info out there about clearer speech.....but what about vocabulary and syntax? I'm just wondering why those stats aren't out there. I mean the CI has improved so that some kids are doing really really well! Why right here we have Liliysdad, who says that Lillys doing so well that she might not even have to go to the actual school at CID! But that doesn't mean that EVERYONE with it is doing well. Even over at Hearing Exchange, they admit that sucess with CI is very very variable.
Just like hearing aids, CI produces different results for everyone.......I mean I bet one of the oral experts would display me as an example of an oral sucess, since I have a very verbose vocabulary......but not everyone who's dhh has the abilty to use sophisticated language.
Cloggy, you misunderstand me............I am not anti CI....Simply anti audist.

Well said!

 

[momtotoes]

We are getting along...
and learning in the process.!!

OK....

 

[deafdyke]

You see all these children that do bad and don't have speech that is "normal". From that perspective it might be difficult - just like with me - to see in the distance and see the children that do really well.

Ummmm no. I'm not saying that there are a signifcent amount of kids who do badly with CI. Just pointing out the obvious fact that performance with CI varies tremendously. You really cannot generalize. Maybe you see all the CI sucesses b/c of the type of program your daughter is in......It can be easy to look at an oral program and think " Oh wow! Look at all these sucesses!"
Another program might have a lot of kids who weren't as sucessful with their CIs. Get what I'm saying now?

 

[greema]

LOL! I have read some of the exchanges between you and Fragmenter and I couldn't figure why he was so hard on you, making cracks about your age and such!

Now I understand! I had no idea you were mother and son!



It all makes sense now.

And don't worry about hijacking Frag's thread... You can see that there are other hearing parents on here supporting you! You parents, keep up the good work in raising your CI children! It is very heartening to come in here and read on updates on everyones' progresses and to read up on different experiences (long implanted, recently implanted, awaiting "turn-on", awaiting surgery, etc. of different ages)!
This is why I don't think Frag would mind because I know he'll be very interested to read up on everyones' progresses, etc. so he'll know where his son will be at, already is at, or has done "at" (bad English, I know)

 

[jag]

Cloggy, no I don't..........it's not as black and white as you're making it seem.
There are kids who are doing REALLY well. Some of them are just average kids. More kids are developing more sophisticated spoken language. I mean the days of many "oral" toddlers having only a handful of spoken words, is pretty much a relict of history. BUT just b/c they can speak better, it does NOT mean that their speech is perfect. !

Actually I Don't get where you think that needing some ST isn't still a success.

The point is parents ARE aware that not all children progress the same, they know that, personally I'd find it very insulting to constantly be told that my child 'might' not have the success. THe problem is my idea of success may be completely different then yours.

You seem to be saying that if a child continues to need ST through his/her HS years when using a CI that child shouldn't be concidered a success. Sigh. The variables as to why that child may have some problems with speech will vary, 'normally' hearing children do have problems with speech so why shouldn't a deaf child with a CI possibly encounter the same type of problems as a hearing child when the child hears? But the whole point is the progress made may be concidered to be a great success from the parents point of view. Success is interpeted by knowing where we've come from and where we are now. The chances of easily aquiring spoken langage is much better and easier on the child with a CI. I really don't know why you seem to think any person who needs some type of audio theraphy isn't a success. The only CI's that I would concider to NOT be a success would be those who find they can't continue to use the processor because they really cannot process any of the sounds coming into their brain. Anyone who gets anything from enviromental sounds only to speech IS successful.

 

[Cloggy]

Ummmm no. I'm not saying that there are a signifcent amount of kids who do badly with CI. Just pointing out the obvious fact that performance with CI varies tremendously. You really cannot generalize. Maybe you see all the CI sucesses b/c of the type of program your daughter is in......It can be easy to look at an oral program and think " Oh wow! Look at all these sucesses!"
Another program might have a lot of kids who weren't as sucessful with their CIs. Get what I'm saying now?

That's what I was saying as well. Both of us see a spectrum of succes. I'm just saying that we are looking in opposite directions....

 

[Fragmenter]

Thank you everyone for all of the great advice! It is very difficult to sort it all out. I am trying to stay fairly neutral at this point.

So, don't mind me if I sit back and take it all in for awhile.

And, I apologize to Fragmenter for kind of taking over this thread.

Oh no, I love everyone who is affected by hearing loss in any way. You're welcome to make yourself or your daughter the focus in my threads. The more information thrown around, the better educated I become!

You're welcome to add anything out there to this thread

 

[momtotoes]

I just have to say...

I am so thrilled to have found this site!

So many points of view and (so far) it seems that there is mutual respect from all sides.

I wish I found this place a year ago.