Parents' Opinion On Hearing Aids & CI

Me too Fragmenter!!! Me too!!!
YOu have done exactly what many "anti-CI for little children"
Click to expand...
Not anti CI! Yeah, there are SOME people who are anti-CI, but a lot of us, simply think that the CI is presented as a first choice, rather then experimenting with all sorts of ways.....like body worn aids (could help with cases where kids can hear but not enough) high freuqncy transponders and even tacticle aids!
 
gnulinuxman said:
Well, Cloggy, here's what happens in the USA. After a kid is diagnosed as being deaf, doctors typically hand out advertisements from Cochlear Corporation and other CI manufacturers, and tell parents that this will make the kid hear. The parents see the deceptive marketing on the brochures and like what they see, and then send their kids off to implant surgery. Then they often expect their kids to be normal hearing children because of what the doctor told them and the educational system, and then these kids sometimes have language development problems. The schools and doctors say "Don't you DARE sign with your kid or they will NEVER learn to use the implant and they will NEVER be normal. You want them to be normal, right?" This will more often than not make the parents and implantee keep paying for the implant (maintenance, repairs, and upgrades).

Health care in the US is driven by marketing, not by public health concerns.

And that's why I am :pissed: about parents implanting their kids in the US.
Click to expand...
So how is scaring parents away from CI better than scaring parents into CI ???

I only the right information would be given by both parties, that would be good.
Still, What's wrong with a deaf child growing up hearing in a hearing family?
Because I believe that when the parents that according you fall for "deceptive marketing" are going to be well-informed.... they will still choose CI.

For me, giving my daughter identity can be done with or without sound. Now she grows up mainly with sound. Sound will be part of her identity.
Later on she might do research on deafness and might experiment with it. That's fine. We gave her the possibility to do that.
Growing up deaf she possibly would have more problems to explore the hearing world.

SO, we believe that we gave her opportunities. The possibility to explore both worlds to the fullest. In her case, she starts off with the hearing world. When she chooses she can explore the deaf world as well. We will be there for her.
 
deafdyke said:
Me too Fragmenter!!! Me too!!!

Not anti CI! Yeah, there are SOME people who are anti-CI, but a lot of us, simply think that the CI is presented as a first choice, rather then experimenting with all sorts of ways.....like body worn aids (could help with cases where kids can hear but not enough) high freuqncy transponders and even tacticle aids!
Click to expand...
I realise that. I'm sorry it came over like that. I should have formulated it better.
But I also realise that at some time you have to stop trying one direction and go for other options. I just wanted to say that one direction was followed for a long time. And I admire the decision to look at another road.
 
Fragmenter said:
I'm defending CI, not bashing it like I used to. I only support it for the right candidates.
Click to expand...

Same here, I used to bash at CI that's because I didn't know alot of information or fact on CI back in the old days until now....

I think it took me a while to understand why some parents choosed CI for their children, now I can understand the reason behind it all, even when I didn't realized how many deaf children out there were quite successful with their language and speech and how much they could actually hear...

I haven't been able to hear my friends on the telephone or their voices, that something I have missed as a child...It was hard back in the old days not being able to make many friends as I wanted to, even when I tried to, then I'm unable to understand them and that hurts
 
I just learned that even the best hearing aids in the world only gives you sound clarity up to 10 feet radius while CI gives you sound clarity up to 30 feet radius! That's a big difference, my friends :whistle:
 
gnulinuxman said:
This is what I just can't understand--Why do people assume deaf children aren't good ehough unless they can HEAR oral speech? My fiancee and my friend Sweetmind, as well as Sue Thomas, learned to LIPREAD, and they do it quite well. In fact, wasn't it lipreading that got Sue Thomas her job in the FBI??? She lipread surveillance videos where the audio equipment was broken and would NOT have been able to do so if she had a cochlear implant or hearing aids! She is part of both worlds and uses neither cochlear implants nor hearing aids but instead uses her EYES. Lipreading does have its advantages.

You don't need to be hearing to enjoy the benefits of both worlds. That's why Deaf extremists are against cochlear implants--because it is possible to use your eyes and LIPREAD. My fiancee can lipread almost anyone (and in fact we used oral communication almost exclusively for about the first 6 months because she was teaching me to sign and I wasn't fluent yet).

Just something to think about. ;)
Click to expand...

Right now I am waiting for my CI and I am using lipreading to get me by. Let me tell you I find it absolutely exhausting compared to the days when I was able to use it together with my hearing aids. I am considered to be an excellent lipreader by normal standards. If I have had a day with a lot of lipreading I am literally in tears from tiredness. It requires intense concentration compared to other forms of communication such as speech or sign.

Just because some people can lipread with no problems doesn't mean everyone can. I have a nephew who only communicates in British Sign Language and he cannot lipread at all. Some people have it and some people do. It is a real skill and I am often reminded of this when hearing people express amazement to me that I can figure out what people behind a glass screen are saying.

I just wish you could stop saying "if so and so can do it then the rest of you don't need it". Just accept that we are all different people and have different strengths, different needs.
 
Fragmenter said:
My five year old son is profoundly deaf and has been training to understand speech with hearing aids for more than 3 years. He has benefitted little from HA's so cochlear implant is now a real option for my son. I used to be against CI growing up but I never had a real excuse why I thought they were the wrong option for deaf people.

I can't be selfish when it comes to my son so I'm debating on giving my son the green light... I'm having extreme emotions right now but I want the best for my son's future. Even his 3 year old deaf sister understands speech better with hearing aids than him. She also speaks very well for a deaf girl with hearing aids. I can't hold my son back and stunt his speech and hearing development. I will still remind him and her of their deaf roots and raise them in the deaf community.

I think CI will help greatly if hearing aids is limiting your child's development. I think the deaf culture is now ready to welcome deaf people with CI... right?
Click to expand...

Welcome Fragmenter. Yes we have had a lot of discussion about acceptance of CIs and some people have made the point that it used to be that when hearing aids first came out in the 1940s and 1950s people were very opposed to them as well. It was feared they would destroy deaf culture.

So if CIs follow the same pattern as hearing aids then there is no reason why by the time your son is a teen no one will even bat an eyelid. They'll just be glad to have him there at deaf gatherings.
 
So how is scaring parents away from CI better than scaring parents into CI ???

I only the right information would be given by both parties, that would be good.
Still, What's wrong with a deaf child growing up hearing in a hearing family?
Because I believe that when the parents that according you fall for "deceptive marketing" are going to be well-informed.... they will still choose CI.

For me, giving my daughter identity can be done with or without sound. Now she grows up mainly with sound. Sound will be part of her identity.
Later on she might do research on deafness and might experiment with it. That's fine. We gave her the possibility to do that.
Growing up deaf she possibly would have more problems to explore the hearing world.

SO, we believe that we gave her opportunities. The possibility to explore both worlds to the fullest. In her case, she starts off with the hearing world. When she chooses she can explore the deaf world as well.
Click to expand...
Actually Cloggy, I definitly agree 100% with you! I wish that more hearing parents were better informed as to what growing up dhh is really like. So often, hearing parents get a biased view.....like the superstars who go off to Ivy League schools and who have lots of friends.....the social issues that even a lot of kids have, aren't addressed, and the varitety of acheivement with CI really isn't accuratly shown. You really are a great parent......and I applaud you! Too often us hoh folks are pushed towards the hearing world or at most just get the boring old Hearing Health 101.
 
deafdyke said:
2kids1hoh, my best advice would be to keep an open mind regarding CI. If your daughter really doesn't respond well to conventional aiding, go for the CI. BUT also, see if other technology can help first! Like, sometimes, a body worn aid can give more power then the traditional BTE aids...and there's also high frequncy transponder things which can help when BTEs don't. Is your daughter seeing an experianced pediatric audi?
Click to expand...


You are right, I am definelty going to keep an open mind. I am trying to take one day at a time and not worry too much about the future. I make myself nuts thinking about when she turns 1, 2 and so on. I need to worry about her now and get her the best help now.

I am going to be taking her to Mill School for the Deaf on Long Island. They are a great school, she will get the speech therapy and everything that goes with that there. They also will be providing her with the hearing aids, so they will do weekly tests on her to see how she is responding. They said they are going to keep trying different hearing aids until they get the best one. They seem to be very dedicated and on top of things. They also mentioned something about an FM unit but I am not too sure what that is. I know it's something I will wear to talk to her from across the room, but that's about what I know. I guess that will help the hearing aids when I am not right on top of her right?
 
Fragmenter said:
I wholeheartedly understand your concerns. We wanted to stick with hearing aids for as long as we can before switching to CI. We need to switch to CI asap so he will not be delayed in his speech, hearing and language development. We're just trying to make the learning curve as flat as possible and as short as possible.
Click to expand...
I just hope you understand that I was NOT referring to hearing aids but rather to LIPREADING. My fiancee doesn't need hearing aids to lipread. My fiancee would prefer lipreading and sign language to cochlear implants.
 
Cloggy said:
So how is scaring parents away from CI better than scaring parents into CI ???

[...]
Click to expand...
Are you aware that what angers me IS the deceptive marketing?! And then they say things like "I love my child and want the best for him/her and want to make sure s/he can succeed in the hearing world. Deaf culture may be for other children, but we want him/her to grow up in the hearing world so s/he can succeed." I am not saying YOU are wrong in particular. I am saying that the expectations are too high in the US and CI manufacturers are paying doctors to push parents into it.

The movie Sound and Fury does a good job of showing why Deaf people and hearing people in Deaf Culture are opposed to implanting deaf children. From what you're saying, things are VERY different here in the US than they are in Norway.
 
Agreed

gnulinuxman said:
I just hope you understand that I was NOT referring to hearing aids but rather to LIPREADING. My fiancee doesn't need hearing aids to lipread. My fiancee would prefer lipreading and sign language to cochlear implants.
Click to expand...

Oh yeah big time, I agree about what I do with lipreading and signing and still be against CIs anyday. phbt!! CIs who needs them.

Deaflinuxgeek
 
gnulinuxman said:
I just hope you understand that I was NOT referring to hearing aids but rather to LIPREADING. My fiancee doesn't need hearing aids to lipread. My fiancee would prefer lipreading and sign language to cochlear implants.
Click to expand...


Okay, I understand. Then you have to understand that OPPORTUNITY is the keyword here.

I'd rather lipread and speak in sign language instead of having a CI thrown in my head. Hey, that is just... so... 1980's! It's too damn old fashioned in my opinion. I only know how to express myself through sign language or written english. I want it to be easier for our children. Simple as that.

After seeing my wife communicate with just anyone through her cellphone countless times for 7 years, how could you convince me it's not good enough reason for my son to have that opportunity?

If you refuse your children of hearing and speech development because you want to pass on the traditional way of life, then so be it. They aren't my children and I couldn't care less about them. Don't try to convince me that it's the best lifestyle for the Deaf. I know our children is capable of achieving truly special stuff in this world. With hearing and speech training; my wife and I are simply giving them an extra avenue to achieve them.

Ultimately, it is up to you as a parent to mold your child's future to your wishes.

I wish for our children to be successful in their goals while carrying the burden of being Deaf.
 
I am going to be taking her to Mill School for the Deaf on Long Island. They are a great school, she will get the speech therapy and everything that goes with that there. They also will be providing her with the hearing aids, so they will do weekly tests on her to see how she is responding. They said they are going to keep trying different hearing aids until they get the best one. They seem to be very dedicated and on top of things
Click to expand...
AWESOME!!!!!!! That is SUPERB!!!! We really DO need specialized Early Intervention, and enrollment in a school for the Deaf is the perfect setting for that. If you are concerned that they are not concentrating enough on speech, (a common complaint with TC programs) you can supplement her speech therapy with sessions with an auditory verbal therapist. Also, don't forget to join the American Society for Deaf Children, and the parentdeaf-hh listserv.....they are both excellent resources....I think that ASDC offers free membership for the first year for parents of newly dx kids!
 
Don't try to convince me that it's the best lifestyle for the Deaf. I know our children is capable of achieving truly special stuff in this world. With hearing and speech training; my wife and I are simply giving them an extra avenue to achieve them.
Click to expand...
Agreed......Dhh kids should not be made victims of idealogies, whether audist (eg auditory-verbal) or Deaf chaunavistic/seperatist!!! Dhh kids should be able to have a FULL toolbox of tools, that they can choose from!!!!! I know many orally raised kids who are glad they can hear and speak......
 
I have a friend, a married couple, both are deaf and has deaf son that got implanted recently last weekend. we were talking about those who are against implantation in deaf children, He said "Early Intervention" is important. I was surprised to hear that and I wholeheartedly agree! His son went in, got implanted then left the same day, got activated the next day (24 hrs!) and went home!
If you want, here's the link to see his site ;
 
Boult said:
I have a friend, a married couple, both are deaf and has deaf son that got implanted recently last weekend. we were talking about those who are against implantation in deaf children, He said "Early Intervention" is important. I was surprised to hear that and I wholeheartedly agree! His son went in, got implanted then left the same day, got activated the next day (24 hrs!) and went home!
If you want, here's the link to see his site ;
Click to expand...

Wow. Last week, I wasn't confident about CI but I'm feeling at peace about our decision lately. Thanks for the link... my wife will enjoy reading about Dominic!
 
Fragmenter said:
Wow. Last week, I wasn't confident about CI but I'm feeling at peace about our decision lately. Thanks for the link... my wife will enjoy reading about Dominic!
Click to expand...
You are welcome
 
Boult said:
I have a friend, a married couple, both are deaf and has deaf son that got implanted recently last weekend. we were talking about those who are against implantation in deaf children, He said "Early Intervention" is important. I was surprised to hear that and I wholeheartedly agree! His son went in, got implanted then left the same day, got activated the next day (24 hrs!) and went home!
If you want, here's the link to see his site ;
Click to expand...

He was activated the day after implantation? I thought you had to let the incision etc heal first?

Great story though!
 
Back
Top