Cochlear Implant advise

[drphil]

To state the matter baldly: I am bilateral DEAF since December 20, 2006. That fact will never change notwithstanding I have/use a Cochlear Implant.

What one does is in part up to you-or parents in case of young children - dealing with the fact of DEAFness-Your choice which!

 

[GrendelQ]

Everyone

thank u all for your opinions and advice i appreciate them all, what i wanted to hear are the both sides opinion and choose what convince me,so if i could've meet up with parents who their child had a CI i would have done that already but i can't,so it's a really hard decision to make without asking for advice from you guys, for the members who think it's not right to to have a CI, what i wanted to know if it is really useful to the kid or not? for those who interacted with a CI child please fill me in.

thanks to you guys i will learn ASL even if my son had a CI ^_^
plus i would love to even hear from people who don't have CI but interacted with children's who does as mentioned above.

Thanks

Frostbolt, I don't think anyone could or should convince you, you need to make the decision yourself and own it. What you probably need most is exposure to deaf children -- a whole range of deaf kids using various technologies and those who use none at all.

Your ENT / CI center may be able to introduce you to local children with CIs/HAs (and their families): mine did that for us. If you don't have a Deaf mentor, check with your commission for deaf and hoh in your state to get a list of schools for the deaf and make appts to visit them, to explore their parent infant programs, and to observe children in classrooms.

We eventually chose a bi-bi academic approach, but we first visited schools that took so many varied approaches, including oral, TC, bi-bi, and mainstream schools with dhh programs). We observed AVT sessions in process, we watched the children interact in an ASL daycare. We spoke with children of all ages and their families. We pored over blogs by families with deaf children, both those who opted for CI or HAs and those who chose not to use any hearing tech, and emailed those families with questions (and learned a great deal). Those blogs probably gave us the best and most realistic accounts of the ups and downs of all these different approaches.

Depending upon your location, you may be able to visit parent infant programs at your nearest school for the deaf to meet deaf adult volunteers and staff, deaf teenagers, other parents of deaf kids (deaf and hearing), as well as a whole range of deaf/hoh kids with a variety of approaches to technology in play. You can also attend conferences for hearing loss -- there are always deaf kids around, and you can strike up conversations asking people about their choices.

But most of all, we observed our daughter -- she very clearly gave us input and feedback -- even as a 1-2 YO -- that led us to our various decisions around language and education and technologies.

 

[CSign]

Everyone

thank u all for your opinions and advice i appreciate them all, what i wanted to hear are the both sides opinion and choose what convince me,so if i could've meet up with parents who their child had a CI i would have done that already but i can't,so it's a really hard decision to make without asking for advice from you guys, for the members who think it's not right to to have a CI, what i wanted to know if it is really useful to the kid or not? for those who interacted with a CI child please fill me in.

thanks to you guys i will learn ASL even if my son had a CI ^_^
plus i would love to even hear from people who don't have CI but interacted with children's who does as mentioned above.

Thanks

I agree with Grendel that you shouldn't look to be "convinced" by posters on a virtually anonymous forum. I think some good suggestions have been made. The only thing I have to add, is that you should contact the CI center and let them know you'd like to get in contact with a few families to ask about their experiences. I'm almost certain they'd be able to come up with a few families who would be willing to talk with you.

 

[ciavmom]

I am the parent of two now grown children who were implanted as babies. You absolutely need to get both viewpoints and then make an educated decision. Those in the deaf culture cannot possibly educate you about the benefits of a CI because they don't have that firsthand experience. My daughters have never learned or needed sign language. They have thrived fully in the mainstream as hearing, speaking people. Their accomplishments include graduating with honors from high school and college, fluency in French, winning a spoken foreign language award, attending a top university and more. Their options for college were the same as my son with normal hearing. While a child raised without hearing in the deaf culture can succeed academically, it is more difficult when they cannot communicate with ease with all and need an interpreter to do so. For a child to realize optimal benefits from a CI, it has to be done early by three years of age at the absolute latest but preferably by age one, and then follow-up therapy such as Auditory-Verbal therapy to realize the full benefits of the CI is essential. Please click on the links at Speaking Up For Themselves | Cochlear Implant Online to read and hear many stories firsthand of those implanted as babies and toddlers.

 

[deafdyke]

I am the parent of two now grown children who were implanted as babies. You absolutely need to get both viewpoints and then make an educated decision. Those in the deaf culture cannot possibly educate you about the benefits of a CI because they don't have that firsthand experience. My daughters have never learned or needed sign language. They have thrived fully in the mainstream as hearing, speaking people. Their accomplishments include graduating with honors from high school and college, fluency in French, winning a spoken foreign language award, attending a top university and more. Their options for college were the same as my son with normal hearing. While a child raised without hearing in the deaf culture can succeed academically, it is more difficult when they cannot communicate with ease with all and need an interpreter to do so. For a child to realize optimal benefits from a CI, it has to be done early by three years of age at the absolute latest but preferably by age one, and then follow-up therapy such as Auditory-Verbal therapy to realize the full benefits of the CI is essential. Please click on the links at Speaking Up For Themselves | Cochlear Implant Online to read and hear many stories firsthand of those implanted as babies and toddlers.

On the other hand, your children cannot function without CIs. If you teach them to depend exlcusively on CIs and sound, they cannot function at ALL without sound and CIs.........What happens when their CI breaks? What happens when they're not in perfect listening situtiouns? Do your kids REALLY honestly feel a part of the hearing world 100%? Have they ever had a serious boyfriend? Can they function without their CI at ALL? Heck, you know, you need very good health insurance to even afford a CI. Health insurance is a BOONDOGGLE. You are making dhh kids DEPENDENT on health insurance. Even healthy hearing people cannot afford good uality health insurance b/c it is SO expensive! We have a poster who was AVT'd, and his CI broke and he couldn't function AT ALL.
You're also forgetting that kids who are AVT trained are monolingal. Isn't having TWO languages better then one?
There's also NO reason why kids cannot be fluent in ASL and spoken/written English and have the best of both worlds. Have you seen some of the bi/bi educated kids? They are fluent in both ASL and English, and are VERY WELL educated!

 

[deafdyke]

Oh, and ciav mom........did you just do a commerical? Is your daughter's business struggling? NOBODY is saying " go voice off" Even many Deaf of Deaf families have their kids enrolled in spoken language therapy. There are even a few who send them to oral schools!!! (I know of a couple of DODAs who sent their kids to Clarke and CID)
I also think those who push Inclusion and the Mainstream World At ALL costs, do not understand that just b/c a kid is pushed towards the mainstream, that they are going to be able to be High Acheivers. Even oral "sucesses" say they don't feel like they fit into the hearing world totally. Heck, I know of a lot of dhh kids who were pushed towards the hearing world, picked up the vibe that they needed to be NORMAL, at ALL costs, and it screwed them up psychologically and emotionally. Access to the mainstream world is NOT lacking at ALL....those of us who are dhh, can have partial access..........but we can NEVER be hearing.
How would you like to be raised with the unspoken attitude that " You must become normal? You must function normally at ALL costs!"? How would you like it, if your strenghs were ignored and you had to focus exclusively on a weakness? That is what auditory verbal therapy does...........it tries to make dhh kids function as Normally As Possible, and demonizes things like ASL, cued speech and even speechreading as "crutches" Quite frankly, I think that auditory verbal is child abuse/snake oil, and that parents who desperately want their kid to be "normal" chose it.

 

[deafdyke]

But most of all, we observed our daughter -- she very clearly gave us input and feedback -- even as a 1-2 YO -- that led us to our various decisions around language and education and technologies.

Exactly. Be very child centered, but also offer a full toolbox. No dhh kid is alike......but ALL dhh kids can benifit from a bilingal spoken and signed language approach. (meaning training in spoken language)

 

[deafdyke]

I am one of the proud people to be implanted as a baby.

I always say, implanting a baby is like training a puppy. Its easier for them to hear/ and have good speech if they start training early. I know many people have a really hard time trying to adapt to an implant if they wait til their old enough

But I cant stress enough that even though you want him to hear... MAKE HIM LEARN ASL.

Yes, but how early is early? I mean we have the mentality that "OMG IMPLANT ASAP otherwise they'll be doomed to selling ASL cards on the subway"......but does a few months REALLY make a HUGE difference? I mean there were kids who weren't ID as dhh until they were 2 or 3 and they still developed spoken language skills/abilties......

 

[GrendelQ]

......but does a few months REALLY make a HUGE difference? .....

Yes.

On the other hand, your children cannot function without CIs.

DD, stating that a deaf child cannot function without CIs is offensive not just to that child and parent, but to all deaf children. Do you really believe this statement?

 

[GrendelQ]

NOBODY is saying " go voice off"

Sure they do. You probably haven't encountered it given that you have far less of a hearing loss than those who are deaf, but going "voices off" without attempting to work on speech development is an option -- a valid option -- for profoundly deaf children today.

E....but ALL dhh kids can benifit from a bilingal spoken and signed language approach. (meaning training in spoken language)

I know many children who are being educated in a bilingual (ASL+ written English) environment and are not undertaking any spoken language training, are "voices off". They would not see any benefit in spoken language training.

 

[Cloggy]

Hi Everyone

I'm John and i have a deaf son who's 9 months old now, i was considering having a cochlear implant for him but someone advised me to ask the deaf community for advice before making a decision and that's what i really need from u , can anyone preferably with experience about the subject advise me if it really does help or not.
plus definitely u will get a "sugar-coated" view of a cochlear implant from those who sale them, despite any good intentions.

please advise ^^

Regards,

Welcome to the wonderful world of AllDeaf..
I notice DD is passionately dismissing the experiences of parents that actually have firsthand experience with children an especially children with CI.
I am also in that category.. (children with CI)

First of all ... Communication with your child is the most important.. So keep speaking normally to er and use signs.. At first it won't be sign language but just signs, but it might develop into sign language. With our daughter we bought a book with (Norwegian) signs and used them in our day to day conversation.. Also after she started to hear with her CIs.

Second, I you live in an area where you have the opportunity to meet Deaf people (capital D) then meet them.
I remember the impact on me when I needed to communicate in sign.

Third, visit blogs of deaf people, of people with CI an especially blogs written by parents of children with CI. Some are here and have blogs as well, like me, GrendelQ and others... On their blogs there are often links to other blogs..
(for our blog, go to Lotte-Sofie.blogspot.com)

Otherwise,
read our blogs with a filter.. We are happy about CI.
Read blogs by Deaf people about CI with a filter. There is often experience there about growing up deaf/ Deaf but often a lot of misconception about CI. Experience about CI is often from other deaf/Deaf people that started using CI after a long time.. With very mixed results.

Keep in touch..

 

[bbaseballboy123]

Yes, but how early is early? I mean we have the mentality that "OMG IMPLANT ASAP otherwise they'll be doomed to selling ASL cards on the subway"......but does a few months REALLY make a HUGE difference? I mean there were kids who weren't ID as dhh until they were 2 or 3 and they still developed spoken language skills/abilties......

Early for me was age of 2 and I still talk at a level that people still dont know that I'm deaf until I say I am lol.

It has to do with timing, and speech support you receieve. I also was lucky to speak at a level where I am today

 

[Frisky Feline]

DeafDyke


Let it go. All you can say is "learn ASL and Speaking" which is sufficient. No need to bring any negatives about speaking.

 

[ciavmom]

Oh, and ciav mom........did you just do a commerical? Is your daughter's business struggling? NOBODY is saying " go voice off" Even many Deaf of Deaf families have their kids enrolled in spoken language therapy. There are even a few who send them to oral schools!!! (I know of a couple of DODAs who sent their kids to Clarke and CID)
I also think those who push Inclusion and the Mainstream World At ALL costs, do not understand that just b/c a kid is pushed towards the mainstream, that they are going to be able to be High Acheivers. Even oral "sucesses" say they don't feel like they fit into the hearing world totally. Heck, I know of a lot of dhh kids who were pushed towards the hearing world, picked up the vibe that they needed to be NORMAL, at ALL costs, and it screwed them up psychologically and emotionally. Access to the mainstream world is NOT lacking at ALL....those of us who are dhh, can have partial access..........but we can NEVER be hearing.
How would you like to be raised with the unspoken attitude that " You must become normal? You must function normally at ALL costs!"? How would you like it, if your strenghs were ignored and you had to focus exclusively on a weakness? That is what auditory verbal therapy does...........it tries to make dhh kids function as Normally As Possible, and demonizes things like ASL, cued speech and even speechreading as "crutches" Quite frankly, I think that auditory verbal is child abuse/snake oil, and that parents who desperately want their kid to be "normal" chose it.

DD - It's people like you with your nastiness and vitriol who years ago chased us as far from the deaf culture as we could get. To answer your questions - I rarely comment on posts like this anymore because people like you attack me and because my daughters are now old enough to speak up for themselves, and they do. It's much better coming from them than from me because they will tell you that they have lived their lives successfully in the mainstream and are very happy with and grateful for the path that my husband and I chose for them so many years ago.

You must not have had any direct personal experience with AVT because it is not cruel. AVT means that the parent spends lots of time playing with the child one-on-one. My girls never knew it was work or therapy. To them it was fun. They got to play with their special toys with mom. If I missed that time with them, they asked for it. They love their therapist to this day. She's like a favorite aunt to them. They could have chosen to learn ASL when they were older, but they chose not to because they didn't need it and wouldn't have had a use for it since they live their lives fully in the hearing world. If you can't believe or accept that, then that is your issue, not theirs.

As for what happens when the implant breaks - It has happened. They have bilateral CIs. My younger daughter was just reimplanted in January. She was totally without hearing in one ear for all of two days. It was nothing more than a blip, and she hears very well out of her other ear so functioned very well for those two days. Their processors are now very water resistant, and so they have even worn them in the water. I would counter your points by saying that my girls have far fewer instances where they can't converse with everyone around them than someone who is largely dependent upon ASL does.

No option short of providing 100% normal hearing is perfect for assuring constant communication with all, but we all make the decisions that we feel are best for our children. As long as those decisions are made out of love with education and a commitment to following through with the effort needed to provide our children with a means to communicate, then no one should attack our choices. I provided a link to a website where many young adults implanted as babies and toddlers are speaking for themselves. The group on the site is a diverse one, including many who never learned sign. Listening to what these young adults have to say is to me the most important piece of research a parent just starting on this path can do today. They can't learn what it is like to be raised with CIs and without sign from someone who hasn't walked that path.

 

[deafdyke]

Early for me was age of 2 and I still talk at a level that people still dont know that I'm deaf until I say I am lol.

It has to do with timing, and speech support you receieve. I also was lucky to speak at a level where I am today

My point exactly. And you were deep profound, right.......no response with hearing aids.
Many kids can develop spoken language abilties with CIs, even if implanted relatively late. Nothing wrong with that.....but a lot of the research indicating that deaf kids do "better" if implanted as babies may be due to other factors like having families where they have access to extremely good speech therapists / health insurance or the type of families where the mother write syllbuses for playtime/its expected they attend the type of pre-school that will prep them for entrance into an Ivy League School.

 

[deafdyke]

Yes.



DD, stating that a deaf child cannot function without CIs is offensive not just to that child and parent, but to all deaf children. Do you really believe this statement?

No, I do not. Please do not twist my words. I am saying that AVT trains dhh kids to NOT be able to function WITHOUT CI or HA or other hearing technology.
I fully believe that deaf kids can be very sucessful with hearing aids and even UNAIDED...............There were generations of dhh kids who aquired speech/had access to sound even without CI.

 

[09smijam]

this is where i need to be.

my daughter is 3. she got implanted last month and is beaing activatedtomorrow. i got on here because i heard the deawf community was very against it. what does everyone think?

 

[Frisky Feline]

my daughter is 3. she got implanted last month and is beaing activatedtomorrow. i got on here because i heard the deawf community was very against it. what does everyone think?

that is not true. im in the deaf community. I am against that any one who wont let little deaf kids who have ci and not allow to learn ASL. Kids need to learn ASL if they have CI, fine. deaf kids can learn BOTH ASL and speaking. no worries!

 

[Cloggy]

My point exactly. And you were deep profound, right.......no response with hearing aids.
Many kids can develop spoken language abilties with CIs, even if implanted relatively late. Nothing wrong with that.....but a lot of the research indicating that deaf kids do "better" if implanted as babies may be due to other factors like having families where they have access to extremely good speech therapists / health insurance or the type of families where the mother write syllbuses for playtime/its expected they attend the type of pre-school that will prep them for entrance into an Ivy League School.

Nope..... that's the brain developing at that young age.... Sorry. (Well.. not really..)
Research clearly shows early as possible implantation has better outcome.... all other factor being equal...

 

[Cloggy]

my daughter is 3. she got implanted last month and is beaing activatedtomorrow. i got on here because i heard the deawf community was very against it. what does everyone think?

Welcome to AllDeaf...

Deaf community wants to see every deaf child being able to communicate.... and that's the most important for me (as the father of a child born deaf) as well.
What the Deaf community thinks is that a child born deaf NEEDS sign language. That's where I disagree.
What the Deaf community also wants is that children born deaf make their own choice if they want a CI or not. There, I also disagree.. And for you and me, that's no longer an issue. Our children can hear now.. we DO have to make sure they can communicate. With sign language, or speech...

Have a great day tomorrow, and keep us informed. And record tomorrow on video if you can... For later...