See, it does happen.

[R2D2]

neecy, Please understand...I realize that many parents who opt for implantation, don't treat it lightly. However, there are some (read SOME) parents and indivduals who almost shop around for a clinic that will implant. Granted, it's probaly somewhat rare, and granted that the same social phenonomoen has been seen with dx of ADD or gifted kids abusing the special ed system in order to get an edge.
I just think that the clinics need to standardize their 'will implant' criteria as well as require psychological counseling ( with a therapist who is familiar with such issues) That's all.....I just think that there's a bit too much wiggle room in the system. There are still people out there who think that a CI is baisicly THE ANSWER.Remember, Auditory verbal approach actually encourages people to see the newest technology as "the best, and the gotta have"

Sorry, I disagree. There needs a bit more substance than one post some years ago on the Hearing Exchange forum to be able to convince people that insurance companies routinely and happily approve CIs for people who score above the FDA criteria. I have however seen heck of a lot of stories of people who easily qualify for CIs and scored well below the FDA criteria but who struggle to get approval from their insurers who definitely haven't had a standardized approach.

But each to their own. If that's what you want to believe then who am I to say anything different? It sounds to me that the real issue is with the FDA criteria? Perhaps you feel that it needs to be made more strict and watertight? The problem with that is that it will cut off a lot of individual cases who do not fit into all the boxes.

 

[deafdyke]

R2D2,
It's tough to say because that sort of thing isn't tracked by studies etc.
I know that overall the CI population is kind of small.
I don't think that the FDA criteria should be stricter. I just think that the CI clinics should have a uniform "will/won't implant" policy. That's all. Here in the states it can be easy to "shop" around for medical things, and that can lead itself to abuse.
Granted the CI hype has died down. Like a few years ago, it was portrayed as basicly hearing person hearing. Now its more portrayed as more of a tool that can help people regain some hearing.
I just think that with the fact that it's hard to tell how well a particular person will respond to various and sundry has, that ambigious canidates should undergo an intensive clinic to see if there are has that could help.

 

[neecy]

It doesn't help that there is still a lot of misinformation being put out about CI's - there are still people who think a CI is nothing more than a glorified HA and all it does is amplify sound, or that children with CI's can not acquire language, ever.

 

[Etoile]

I think one mistake is to assume that if you are getting benefit from HA's, you will get MORE benefit from a CI. They operate in two totally different ways, and - correct me if I am wrong - that little boy is going to have to learn an all new way to listen. In the first post, the mom said that she thinks his "learning to listen" training has been helping - great! But now they have to start again, as in "learning to understand the CI's information." He is young, and if it's going to work, it should work rapidly, but going from a HA to a CI is not like getting "even MORE amplification than HA's can provide" - it's a totally different system. I could be totally wrong, please correct me if that is the case.

 

[R2D2]

I think one mistake is to assume that if you are getting benefit from HA's, you will get MORE benefit from a CI. They operate in two totally different ways, and - correct me if I am wrong - that little boy is going to have to learn an all new way to listen. In the first post, the mom said that she thinks his "learning to listen" training has been helping - great! But now they have to start again, as in "learning to understand the CI's information." He is young, and if it's going to work, it should work rapidly, but going from a HA to a CI is not like getting "even MORE amplification than HA's can provide" - it's a totally different system. I could be totally wrong, please correct me if that is the case.

It depends on the severity of the hearing loss. At mild/moderate levels of deafness you would be correct, the differences are very marginal. HAs do their job best at these levels of deafness.

However at profound levels of deafness HAs are more powerful and there is more distortion created through the ampflication process. At profound levels of deafness also, the hair nerves needed by HAs to operate are more damaged as well, which again can cause less clarity. So this can be why so many people at profound levels of deafness report being able to hear more clearly with a CI compared to a HA, especially if they are looking to understand speech.

So there is no clear "yes" or "no" answer. It just depends on a number of factors.

 

[scrapgal2732]

Hi,
My name is Tina and I am Christian's Mommy. My son is the little boy that you all have been discussing here on this thread. I feel compelled to clarify some things. Here's a couple of things that you should know:

1. My son's hearing loss is not, and WILL NEVER, get better. We are a Connexin 26 family. He will always be Severe-to-Profoundly Deaf.

2. Christian IS babbling, and IS getting SOME benefit from his aids. However,due to the severity of his hearing loss, he is missing most speech sounds. He doesn't hear ANY high frequency sounds. We learned much of his babbling and experimenting with sound is from intensive therapy that I provide as a SAHM Mom here to him, and from lip reading.

3. We are going through the candidacy process for a CI for my son. Any person who assumes that the ONLY reason that parents want to implant their children to get a "trendy" device is out of line and completely wrong. To my family, a cochlear implant is anything but trendy. It is a device that will help my son have access to the speech sounds that he WILL NEVER have with hearing aids. I want EVERYONE to know that our decision whether or not to implant our son is not one that we can rush into. Why would I do that? This is MY CHILD THAT WE ARE TALKING ABOUT. He is my number one priority. My joy. My life. My angel. I have spoken with parents who have chosen to implant, those who did not, adults with CIs, children with CIs, and many members of local Deaf Community. Anyone who thinks that parents who are contemplating a CI just RUSH into it are wrong.

I don't want to introduce myself to this group with a rant, but I felt the need to defend my family and my son, as we were not being accurately represented on this group.

Tina
Christian's Mommy
Live*Laugh*Love*Family

 

[scrapgal2732]

One more thing

Again, I apologize for the rant, but I'm in Mommy-Defensive mode right now. For those of you who know me and my family through our blog, you know that we're usually very laid back.

 

[jillio]

Hi,
My name is Tina and I am Christian's Mommy. My son is the little boy that you all have been discussing here on this thread. I feel compelled to clarify some things. Here's a couple of things that you should know:

1. My son's hearing loss is not, and WILL NEVER, get better. We are a Connexin 26 family. He will always be Severe-to-Profoundly Deaf.

2. Christian IS babbling, and IS getting SOME benefit from his aids. However,due to the severity of his hearing loss, he is missing most speech sounds. He doesn't hear ANY high frequency sounds. We learned much of his babbling and experimenting with sound is from intensive therapy that I provide as a SAHM Mom here to him, and from lip reading.

3. We are going through the candidacy process for a CI for my son. Any person who assumes that the ONLY reason that parents want to implant their children to get a "trendy" device is out of line and completely wrong. To my family, a cochlear implant is anything but trendy. It is a device that will help my son have access to the speech sounds that he WILL NEVER have with hearing aids. I want EVERYONE to know that our decision whether or not to implant our son is not one that we can rush into. Why would I do that? This is MY CHILD THAT WE ARE TALKING ABOUT. He is my number one priority. My joy. My life. My angel. I have spoken with parents who have chosen to implant, those who did not, adults with CIs, children with CIs, and many members of local Deaf Community. Anyone who thinks that parents who are contemplating a CI just RUSH into it are wrong.

I don't want to introduce myself to this group with a rant, but I felt the need to defend my family and my son, as we were not being accurately represented on this group.

Tina
Christian's Mommy
Live*Laugh*Love*Family

It is great to know that you are in contact with the Deaf community. Also, that you obviously have been using sign with Christian. You are covering all of your bases, but unfortunately, that is not always the case. That doesn't mean that you fall into this category, but there are parents (even a couple on this board) that have refused to allow their deaf child to be exposed to the Deaf community, that refuse to use sign language with their implanted child, and continue to insist that the CI has made their deaf child "hearing".

As the mother of a Deaf son, as well as a professional that works with other deaf/Deaf people, I commend you on your contact with other deaf/Deaf individuals. The CI can be a wonderful devise when one receives optimum benefit. However, there is no guarantee of optimal benefit for any individual, and the majority of CI users still require some form of visual support in communication. This can be especially important during language development, and later on, in the educational placement. Bilingiuiaulism offers numerous advantage to deaf children, whether they have been implanted or not.

You are in for a journey that will enrich your life in many ways as the parent of a deaf child. If you will open yourself to the world of deafness, and embrace it as part of not just your son's world, but a large part of your world as well, you discover some amazing things. I know that it has given me a wider perspective.

Good luck to you and your family.

 

[jag]

If your bases, but unfortunately, that is not always the case. That doesn't mean that you fall into this category, but there are parents (even a couple on this board) that have refused to allow their deaf child to be exposed to the Deaf community, that refuse to use sign language with their implanted child, and continue to insist that the CI has made their deaf child "hearing".
.

So name them, I must have missed those people, all the parents postings I've read state that their child is still deaf. Like Cloggy said, his daughter is deaf, but she hears. Same with myself.

 

[jillio]

So name them, I must have missed those people, all the parents postings I've read state that their child is still deaf. Like Cloggy said, his daughter is deaf, but she hears. Same with myself.

No need to name them. If yo are truly interested, the posts are stilla vailable, I'm sure.

 

[vallee]

So name them, I must have missed those people, all the parents postings I've read state that their child is still deaf. Like Cloggy said, his daughter is deaf, but she hears. Same with myself.

I agree with you. Jag, also like me!

What we should be saying is, we should not have discussed her child without contacting her blog. IMO we have no right to pass judgement on how she raises her child. I would be feel terrible to find out that a site was passing false information on her child. I hope people do not "run" her off. Her blog is a wealth of information.

 

[R2D2]

Welcome Scrapgal2732,

I'm glad you posted. I think this is the problem with blogs, people can draw conclusions from fairly minimal information.

I hope you are not put off. It is very evident that you really love Christian and have done considerable research It's ironic sometimes that loving parents who have chosen a CI for their children can be heavily criticised but parents who do not implant their children but who cannot be bothered to communicate with them in any way or form and put them in a residential school to get them out of the way seem hardly get mentioned. I know such families exist because my friend is a teacher of deaf children and has told me about such parents.

 

[scrapgal2732]

Learning...and now a bit more upset...

I do have to say that I never expected my sitetracker on my blog to lead me to a page where people that I never met where analyzing how I am raising my child. In all honesty, I was completely shocked. I do appreciate those folks on here who do know me and my family from our blog, Listen-Up, and Ci-Circle who tried to clarify some things. I really, really appreciate that. I also appreciate the folks on this board who are trying to help me understand where all this was coming from.

I am an open, honest person, and my blog has connected me with many members of the D/HOH community from around the world. It has enabled me to form friendships with other parents who have children with hearing loss. I know that putting my family's information on the internet gives everyone access to us. I am ok with that.

What I am not ok with is there seems to be part of a community that I AM SO DESPERATELY EAGER TO LEARN MORE ABOUT SO I CAN LEARN MORE ABOUT MY SON can be so divisive, so judgmental and just so closed-minded.

Luckily, most of my interactions and relationships with folks from the Deaf community have been warm, supportive, and loving. The folks that I have been in touch with love my son regardless of what type of assistive device he uses to hear. HE IS STILL DEAF. HE WILL ALWAYS BE DEAF. I can't, won't, and do not want to change that.

I ask that before you pass judgment and ridicule the efforts, therapies and choices that families make that you stop for a moment and respect that what may be good for one family may not be good for another.

Lastly, I would strongly urge everyone on this message board to use caution before you boldly link to another family's blog without contacting them first. You all were talking about my toddler son, just 14 months old. He's just a baby, and folks were analyzing him like he was some test-case. He's a little boy who is into Elmo and loves trucks. Much of the conversation on this thread was about things about my son that were flat out not true at all.

Tina
livelaughlovefamily.blogspot.com

 

[R2D2]

As someone who believes that parents should be able to make an informed choice on whether to implant their children, I sympathise with you feeling judged and your little boy being analysed and some of us did try and defend you. However, a blog is a public document. You are publishing an area that is considered to be controversial to a world audience that does not know you from a bar of soap and unfortunately, you will be judged and not always fairly.

I'm not sure what the usual etiquette is regarding forum discussions about people's blogs placed in a public arena. Are we always meant to get permission? We've talked about blogs and Vlogs before and have posted links but have never asked for permission first before posting the link. Perhaps a moderator should clarify this for us.

 

[shel90]

As someone who believes that parents should be able to make an informed choice on whether to implant their children, I sympathise with you feeling judged and your little boy being analysed and some of us did try and defend you. However, a blog is a public document. You are publishing an area that is considered to be controversial to a world audience that does not know you from a bar of soap and unfortunately, you will be judged and not always fairly.

I'm not sure what the usual etiquette is regarding forum discussions about people's blogs placed in a public arena. Are we always meant to get permission? We've talked about blogs and Vlogs before and have posted links but have never asked for permission first before posting the link. Perhaps a moderator should clarify this for us.

This is one of the reasons why I cant imagine making a public blog about my children. Once their lives are displayed on public, I will be asking for both positive and negative comments. That is always gonna happen especially about something controversial.

 

[Drew's Dad]

Yeah, but she said that the audilogist was saying that they were maxing out on traditional amplification, and that it might be time for CI.
Neecy and Drews Dad, How do I put it this way? While many implantations are perfectly legitimate (ie the person has VERY poor speech perception even with aids) I have seen a trend of "OMG the CI is the best most modern hearing gadget out there!" I remember clearly in the 90's, the exact same thing happening with digital aids. Digital aids were hyped as the most modren thing...Lots of people thought that they were automaticly better then analogs.......The thing is, that EVERYONE'S different. No one (not even with the same audiogram) will respond the same to amplification. I realize the benifits of getting more of the speech banana, but b/c of the indivduality thing, I really think that when dealing with an ambigious canidate,(NOT a canidate who is obviously clearly a clear cut canidate) its better to experiment with all sorts of hearing aids, and leave the CI as a last resort thing.

I don't understand where you get this 'trendy, latest gadget" idea. I believe I can speak for almost everyone with a cochlear implant, and almost any parent of a child when I say that none of them "want" a cochlear implant.

Who "wants" to go around with one or two boxes hanging from their ears, connected to a wire with a magnet that sticks on their head? Who "wants" to have to have their child walk around with blinking red lights above their ears and/or have a beeping alarm go off each time the coil is accidentally removed? Who "wants" to have everyone at the mall or park stare at your child (or you) as they try to figure out what the heck is on that kid's head?

No one "wants" this "gadget" you describe as trendy and hyped. What people want is the ability to hear well, either for themselves or for their children. If they can hear well enough with hearing aids, they'll use those. Aids are cheaper, easier to wear, easier to maintain, and look a whole lot less alien than CI's do. Only if no other option remains to provide enough hearing ability will people consider a CI's.

The reason the CI is "trendy" is because it is working so well for so many people. The reason the CI is "hyped" is because of the great results children and adults are getting from them. It may be the best "gadget" that no one wants.

 

[vallee]

I don't understand where you get this 'trendy, latest gadget" idea. I believe I can speak for almost everyone with a cochlear implant, and almost any parent of a child when I say that none of them "want" a cochlear implant.

Who "wants" to go around with one or two boxes hanging from their ears, connected to a wire with a magnet that sticks on their head? Who "wants" to have to have their child walk around with blinking red lights above their ears and/or have a beeping alarm go off each time the coil is accidentally removed? Who "wants" to have everyone at the mall or park stare at your child (or you) as they try to figure out what the heck is on that kid's head?

No one "wants" this "gadget" you describe as trendy and hyped. What people want is the ability to hear well, either for themselves or for their children. If they can hear well enough with hearing aids, they'll use those. Aids are cheaper, easier to wear, easier to maintain, and look a whole lot less alien than CI's do. Only if no other option remains to provide enough hearing ability will people consider a CI's.

The reason the CI is "trendy" is because it is working so well for so many people. The reason the CI is "hyped" is because of the great results children and adults are getting from them. It may be the best "gadget" that no one wants.

You said it perfectly. Thank you

 

[jillio]

I agree with you. Jag, also like me!

What we should be saying is, we should not have discussed her child without contacting her blog. IMO we have no right to pass judgement on how she raises her child. I would be feel terrible to find out that a site was passing false information on her child. I hope people do not "run" her off. Her blog is a wealth of information.

When you open up your private life by making your child and your decisions the topic of a blog, then you also accept the fact that your child and your decisions are open to public discussion. Want to keep your life private? Don't post the intimate details on the Internet. Very simple. Perhaps the OP should have asked permission before offering the link to this person's blog. But he obviously didn't. Either way, the mother is respsonsible for making her child and her decisions available for public comment. Once that has been done, the power of censorship is lost.

 

[jillio]

I don't understand where you get this 'trendy, latest gadget" idea. I believe I can speak for almost everyone with a cochlear implant, and almost any parent of a child when I say that none of them "want" a cochlear implant.

Who "wants" to go around with one or two boxes hanging from their ears, connected to a wire with a magnet that sticks on their head? Who "wants" to have to have their child walk around with blinking red lights above their ears and/or have a beeping alarm go off each time the coil is accidentally removed? Who "wants" to have everyone at the mall or park stare at your child (or you) as they try to figure out what the heck is on that kid's head?

No one "wants" this "gadget" you describe as trendy and hyped. What people want is the ability to hear well, either for themselves or for their children. If they can hear well enough with hearing aids, they'll use those. Aids are cheaper, easier to wear, easier to maintain, and look a whole lot less alien than CI's do. Only if no other option remains to provide enough hearing ability will people consider a CI's.

The reason the CI is "trendy" is because it is working so well for so many people. The reason the CI is "hyped" is because of the great results children and adults are getting from them. It may be the best "gadget" that no one wants.

Your statements need to be qualified with "some". Not all get the "great results" of which you speak.

 

[Drew's Dad]

When you open up your private life by making your child and your decisions the topic of a blog, then you also accept the fact that your child and your decisions are open to public discussion. Want to keep your life private? Don't post the intimate details on the Internet. Very simple.

I agree that having a blog invites discussion on what you post, for both people that share your view and those who disagree.