To Implant or Not to Implant? That is my question . . .

[jag]

Was your father involved on the implant teams? Just asking, because he seems to be one of the non-biased members of the medical community I was referring to in another post.

My implant team did not say they could cure me, in fact they stressed that the CI could 'help' me, not that it would cure me. They have been very amazed at the results I've had from the moment it was turned on, and they stressed to me that those results are not typical. They never said or implied that it was a cure.

 

[jillio]

My implant team did not say they could cure me, in fact they stressed that the CI could 'help' me, not that it would cure me. They have been very amazed at the results I've had from the moment it was turned on, and they stressed to me that those results are not typical. They never said or implied that it was a cure.

I never said that the implant teams explicity say cure. And the way an adult who has been dealing with deafness for some time, and the way the hearing parents still in shock from finding out they have a deaf child, and have never been exposed to deafness interpret what is said is two different things. That factor is one of the biggest reasons that Sweden has adopted the policies of insuring that all parents are exposed to all forms of communicaiton immedicately following diagnosis. They insure that parents get the info needed to understand the reality of the situation. Parents in American recieve no mentoring from deaf adults, no counseling, to ready access to sign classes, no follow up from social workers familiar with deafness........nothing. And that is a huge problem. Too many parents never make the psychological adjustment to their child's deafness and without completing that process, their ideas of what deaf is is often cemented in stereotypes and innacurate assessments. They may reach the point where they know that their child is deaf, but they do not accept that their child is deaf and become okay with that fact. They reach the point, and you will have to admit that you have read this from parents right here on this forum........I know my child is deaf, but with CI they can hear and therefore can function on a hearing level and assimilate into the hearing culture. Interact with and assimilate into are two different things, and there are very few deaf indiviuals (prelingually deafened, or deafened prior to adulthood) that are able to fully assimilate into the hearing culture. The stories of being able to interact, but still always feeling apart and different are a common thread running through deafness, both those deaf individuals that are deaf and those that are Deaf. Both those who have achieved some academic success as oral deaf, and those who have not. And that one fact alone has huge implications on the rest of a kid's life.

 

[SkullChick]

oh please

Oh come on what's this bull about "cure" you people just assume that the rage about CI is because hearing people want to cure deafness and makes them hearing and won't accept them that they're deaf? Oh please you need to put your pride aside and think about how much CI had helped so many people? Plus I never heard not once of any doctor, audiologist, specialist or any hearing people called CI as a cure for deafness all they said is it's great tool for person whom HA does not work well for person with profound hearing loss. Only I heard it is from deaf people who are against CI. And no CI won't makes person not deaf because CI won't gain the hearing to normal so they will always be deaf. Sure some people been sent to oral school its only because parents are trying to makes best choice for their children they know this is hearing world and they don't always have time to babysit deaf person all the time so they want their child to have more opportunity to succeed in life and be completely independent. I used to be hoh (hard of hearing without hearing aid I had 50 db loss and with hearing aid I can hear leaf rustling, bird singing, rainfall its beautiful sound ever but now I'm completely deaf its devestating that I can't even hear fire alarm when I'm right next to it I almost start crying when I found out that I'm completely deaf and that I'm broken not my hearing aid (I went in to get new hearing aid I thought its broken but turned out I lost it all suddenly) so I'm trying my hardest to get cochlear implant (I'm 100 db loss on average for all frequency/hertz whatever)
So far it looking good that I could be canditate for it since I have excellent audiory memory (like still remember what everything sound like) and still have good speech skill and I'm still fairly young (19 going on 20 in few months) so I have good chance and for you people with pride you need to grow up and face it that you're in hearing world and if you want to stay in completely silence with no speech or anything except sign you are so limited in what you can do with your career and social and world don't always have time to babysit you all time so shut up and leave people who want CI or better future for their deaf children alone because you don't have right to tell them that they're bad people for trying to help themselves or their child ok?

 

[shel90]

Oh come on what's this bull about "cure" you people just assume that the rage about CI is because hearing people want to cure deafness and makes them hearing and won't accept them that they're deaf? Oh please you need to put your pride aside and think about how much CI had helped so many people? Plus I never heard not once of any doctor, audiologist, specialist or any hearing people called CI as a cure for deafness all they said is it's great tool for person whom HA does not work well for person with profound hearing loss. Only I heard it is from deaf people who are against CI. And no CI won't makes person not deaf because CI won't gain the hearing to normal so they will always be deaf. Sure some people been sent to oral school its only because parents are trying to makes best choice for their children they know this is hearing world and they don't always have time to babysit deaf person all the time so they want their child to have more opportunity to succeed in life and be completely independent. I used to be hoh (hard of hearing without hearing aid I had 50 db loss and with hearing aid I can hear leaf rustling, bird singing, rainfall its beautiful sound ever but now I'm completely deaf its devestating that I can't even hear fire alarm when I'm right next to it I almost start crying when I found out that I'm completely deaf and that I'm broken not my hearing aid (I went in to get new hearing aid I thought its broken but turned out I lost it all suddenly) so I'm trying my hardest to get cochlear implant (I'm 100 db loss on average for all frequency/hertz whatever)
So far it looking good that I could be canditate for it since I have excellent audiory memory (like still remember what everything sound like) and still have good speech skill and I'm still fairly young (19 going on 20 in few months) so I have good chance and for you people with pride you need to grow up and face it that you're in hearing world and if you want to stay in completely silence with no speech or anything except sign you are so limited in what you can do with your career and social and world don't always have time to babysit you all time so shut up and leave people who want CI or better future for their deaf children alone because you don't have right to tell them that they're bad people for trying to help themselves or their child ok?

Iam sorry that u are devastated about your deafness and hope u get the CI.

Many deaf people are happy being deaf and live successful lives. I am one of them. I dont feel limited at all cuz I dont allow myself to get limited.

I work with deaf children who have CIs who were unable to develop spoken language. What would u do if u encounter a child like that? Tell them that they are limiting themselves? Sometimes kids just cant. My brother couldnt develop oral language but he is leading a successful and happy life.

 

[jillio]

Oh come on what's this bull about "cure" you people just assume that the rage about CI is because hearing people want to cure deafness and makes them hearing and won't accept them that they're deaf? Oh please you need to put your pride aside and think about how much CI had helped so many people? Plus I never heard not once of any doctor, audiologist, specialist or any hearing people called CI as a cure for deafness all they said is it's great tool for person whom HA does not work well for person with profound hearing loss. Only I heard it is from deaf people who are against CI. And no CI won't makes person not deaf because CI won't gain the hearing to normal so they will always be deaf. Sure some people been sent to oral school its only because parents are trying to makes best choice for their children they know this is hearing world and they don't always have time to babysit deaf person all the time so they want their child to have more opportunity to succeed in life and be completely independent. I used to be hoh (hard of hearing without hearing aid I had 50 db loss and with hearing aid I can hear leaf rustling, bird singing, rainfall its beautiful sound ever but now I'm completely deaf its devestating that I can't even hear fire alarm when I'm right next to it I almost start crying when I found out that I'm completely deaf and that I'm broken not my hearing aid (I went in to get new hearing aid I thought its broken but turned out I lost it all suddenly) so I'm trying my hardest to get cochlear implant (I'm 100 db loss on average for all frequency/hertz whatever)
So far it looking good that I could be canditate for it since I have excellent audiory memory (like still remember what everything sound like) and still have good speech skill and I'm still fairly young (19 going on 20 in few months) so I have good chance and for you people with pride you need to grow up and face it that you're in hearing world and if you want to stay in completely silence with no speech or anything except sign you are so limited in what you can do with your career and social and world don't always have time to babysit you all time so shut up and leave people who want CI or better future for their deaf children alone because you don't have right to tell them that they're bad people for trying to help themselves or their child ok?

No one is telling any parent that they are bad because they want to help their child. You are oversimplifying the issue. Were you raised by hearing parents? I find your reference to being broken interesting. There are deaf individuals the world over that object to the reference of being broken, and do not feel that they are in need of being fixed. And they have every bit as much of a right to thier self image as anyone else. Personally, I believe that it is the healthier self image.

 

[shel90]

No one is telling any parent that they are bad because they want to help their child. You are oversimplifying the issue. Were you raised by hearing parents? I find your reference to being broken interesting. There are deaf individuals the world over that object to the reference of being broken, and do not feel that they are in need of being fixed. And they have every bit as much of a right to thier self image as anyone else. Personally, I believe that it is the healthier self image.

If someone told me that I was limiting myself because I prefer to use ASL over my oral skills most of the time, I would have a shit fit. It took me a long and hard road to accept my deafness and that being hearing is not going to make my life perfect. Just live my life to the best of my ability and love thyself. That's all anyone can do...and those deaf children deserve to have the right to feel that way too. They dont need to be "hearing" to lead successful lives..many many deaf people have proven that theory wrong.

 

[LTHFAdvocate]

Here is a list of citations we use to refute insurance companies claims that a refusal of a second implant is legitimate because the first implant "cured' the person's deafness.

Research Institutions

Johns Hopkins Magazine - September 1996 Issue
The Johns Hopkins News-Letter

Virginia Merril Bloedel Hearing Research Center - Cochlear Implants

Frequently Asked Questions - New York Eye & Ear Infirmary

Deafness

UCSF - Cochlear Implant

The Decision-Making Process-Cochlear Implants--KidsWorld Deaf Net E-Document--Gallaudet University's Laurent Clerc National Deaf Education Center


Manufacturers

http://www.bionicear.com/news/article.asp?ArticleID=119

News Agencies

Defiantly Deaf - New York Times

PBS - Scientific American Frontiers:Growing Up Different:Cochlear Controversy

http://www.sacbee.com/static/archive/news/projects/implant/20010318_main.html

Professional Organizations and Support Groups

Interviews from Audiology Online: Interview with John Niparko MD, Director of Otology and Neuro-otology, Johns Hopkins Medical Center

Biology News: Language learning declines after second year of life

Former Miss America, Heather Whitestone, Recovers Her Hearing - DrDonnica.com - The First Name in Women's Health

http://www.deaftoday.com/news/archives/003876.html

Models of Deafness: Cochlear Implants in the Australian Daily Press -- Power 10 (4): 451 -- The Journal of Deaf Studies and Deaf Education

Ask-The-Experts About Hearing Aids: Mainstreaming a Child with a Cochlear Implant

http://www.gatecommunications.org/gatecomm/questions_about_deafness.htm

Hands & Voices :: ‘Sound and Fury' Update

http://www.oif.org/site/DocServer/CochlearQA.pdf?docID=3002

Cochlear, Middle Ear and Auditory Brainstem Implants and Bone-Anchored Hearing Aids: Hear-it

What Are Some of the Important Decisions I Will Have To Make? - How do we Decide? - My Baby's Hearing

Gideon's Crossing: A Television Program Addressing Cochlear Implants with Comments from the National Association of the Deaf

Cochlear Implant Central - Success Factors

Hopkins Study Proves Cochlear Implants Prevent or Reverse Damage to Brain’s Auditory Nerve System

http://www.hope4hearing.org/implant.htm

The Scientist : Blogs

Hearing Loss - Deafness Information for Hearing Kids

http://cochlearimplant.quickseek.com/

cochlear implant: Definition and Much More from Answers.com


International sources (UK, Canada, Australia, Ireland, Italy) including the BBC, the Royal National Institute for the Deaf

BBC - h2g2 - Hearing Aids

Addenbrooke's Hospital: Cambridge University Hospitals NHS Foundation Trust

Deafness Research UK : Tinnitus : Are there treatments for tinnitus?

http://www.ndcs.org.uk/news_media/key_information/faqs.html

RNID.org.uk: Information and resources: Our factsheets and leaflets: Medical: Factsheets and leaflets

RNID.org.uk: Information and resources: Getting help: If your child is deaf: Cochlear implants for children

Addenbrooke's Hospital: Cambridge University Hospitals NHS Foundation Trust

Deaf education

Cochlear Implants - section 1 - Family factsheets - GOSH and ICH

http://www.ndcs.org.uk/news_media/ndcs_press_releases/new_publications.html

Cochlear Implants for Children

Breakthrough in deafness treatment

HSC: News Releases

Cochlear implants-Print version

http://www.aad.org.au/download/CochlearImplants.pdf

Newsletter 3

 

[jillio]

If someone told me that I was limiting myself because I prefer to use ASL over my oral skills most of the time, I would have a shit fit. It took me a long and hard road to accept my deafness and that being hearing is not going to make my life perfect. Just live my life to the best of my ability and love thyself. That's all anyone can do...and those deaf children deserve to have the right to feel that way too. They dont need to be "hearing" to lead successful lives..many many deaf people have proven that theory wrong.

BINGO! Yet no matter how many examples of deaf people who live with their deafness, do not resent their deafness, do not want to change their deafness, yet are successful, happy, productive people we can give, the attitude exists. It is a very sad situation when so many people believe that there way of living is the only good way, and see anyone else's personal decision regarding their life as a threat.

 

[highlands]

Thanks for the rich links ,LTHFAdvocate

 

[MetroGuy03]

Hello everyone,

I have an argument about cochlear implant on myspace group "cochlear implant" It is not like I'm against it. I only support for deaf individual to decide to get one on their own without any pressures. It is seen like some parents of deaf children with cochlear implants didn't get my points very well. I am trying to see why they thinks I didn't get the point and have no knowledge about cochlear implant. I was just trying to explain to them why it is a hot topic and it do matter. It kept ending up having some people attacking me lately.

I need your help to point it out for me what I did was wrong. To be honest with you guys, I haven't see anything wrong about what I said.

This link,

Myspace.com

Thanks!

 

[jillio]

Hello everyone,

I have an argument about cochlear implant on myspace group "cochlear implant" It is not like I'm against it. I only support for deaf individual to decide to get one on their own without any pressures. It is seen like some parents of deaf children with cochlear implants didn't get my points very well. I am trying to see why they thinks I didn't get the point and have no knowledge about cochlear implant. I was just trying to explain to them why it is a hot topic and it do matter. It kept ending up having some people attacking me lately.

I need your help to point it out for me what I did was wrong. To be honest with you guys, I haven't see anything wrong about what I said.

This link,

Myspace.com

Thanks!

You didn't say anything wrong. Hearing parents of deaf children who have been implanted are just reluctant to accept the deaf viewpoint. It is their problem, not yours. It is because they are so set in believing that the implant is going to make their child more hearing than deaf. They are very misinformed, and very ethnocentric in their beliefs, and refuse to accept that the people who know the most about living with deafness are the deaf themselves. You keep right on expressing your opinions. Hearing parents and hearies in general need to hear it over and over because it seems to be something they have trouble understanding.

 

[MetroGuy03]

You didn't say anything wrong. Hearing parents of deaf children who have been implanted are just reluctant to accept the deaf viewpoint. It is their problem, not yours. It is because they are so set in believing that the implant is going to make their child more hearing than deaf. They are very misinformed, and very ethnocentric in their beliefs, and refuse to accept that the people who know the most about living with deafness are the deaf themselves. You keep right on expressing your opinions. Hearing parents and hearies in general need to hear it over and over because it seems to be something they have trouble understanding.

Thanks! I thought so too. I just want to make sure if I am not missing anything on this argument.

 

[jillio]

Thanks! I thought so too. I just want to make sure if I am not missing anything on this argument.

Nope, you're not missing anything. As a matter of fact, you understand it better than the people who are criticising you!

 

[BearBeauty]

I'm deaf, don't have a CI, considering getting one, only thing that I'm worried about is the fact I haven't heard anything in 24 years and have virtually no memory of hearing.

I say to each their own. I have no problems with my deafness. I'm only considering CI's because I want to know what it's like to hear. Since I haven't heard in so long. So, for me, this is curiousity more than anything else.

 

[MetroGuy03]

I'm deaf, don't have a CI, considering getting one, only thing that I'm worried about is the fact I haven't heard anything in 24 years and have virtually no memory of hearing.

I say to each their own. I have no problems with my deafness. I'm only considering CI's because I want to know what it's like to hear. Since I haven't heard in so long. So, for me, this is curiousity more than anything else.

You possibly will pick it up faster than you think. One of my friends who have been deaf for over 45 years (she lost her hearing at age 19 while she was in college) and got a cochlear implant almost last year ago. She remember almost all sounds and picked it up faster than expected. She is very happy with it and still involved both deaf/hearing worlds.

 

[R2D2]

Hello everyone,

I have an argument about cochlear implant on myspace group "cochlear implant" It is not like I'm against it. I only support for deaf individual to decide to get one on their own without any pressures. It is seen like some parents of deaf children with cochlear implants didn't get my points very well. I am trying to see why they thinks I didn't get the point and have no knowledge about cochlear implant. I was just trying to explain to them why it is a hot topic and it do matter. It kept ending up having some people attacking me lately.

I need your help to point it out for me what I did was wrong. To be honest with you guys, I haven't see anything wrong about what I said.

This link,

Myspace.com

Thanks!

I thought you were pretty polite and that is something I respect about any poster, even if I might not agree with their view. However, one thing I noticed was that she was the one who started the thread and she asked a question about thoughts on whether to go bilateral or not. You then appeared and asked her quite a lot of questions about whether or not her daughter is accepted and is happy.

As a parent myself, I can kind of understand why she reacted as she did. If I had for example posted a question about bottle feeding and then someone came along and asked whether I'd considered breastfeeding and asked all these questions about whether I hadn't tried hard enough or was my child happy with bottle feeding, then that would definitely put me on the defensive and make me feel attacked. Parents of young children are in quite a vulnerable stage generally and often worry about whether or not their decisions are the right ones. Sorry, you might feel you are right in what you said but that's the way things happen in communication.

I think a better way would have been to have started a completely new post in the same forum.

Interesting thread though. I found Alicia's response interesting. I think it would be positive posts like hers that would encourage parents to take up sign language, personally.

Anyway I don't want to discourage you. You obviously care about what you've said and that is great

 

[MetroGuy03]

I thought you were pretty polite and that is something I respect about any poster, even if I might not agree with their view. However, one thing I noticed was that she was the one who started the thread and she asked a question about thoughts on whether to go bilateral or not. You then appeared and asked her quite a lot of questions about whether or not her daughter is accepted and is happy.

I asked her these questions because she is seen like she is not sure if she is doing the right things. Last part of that question post if she answered it all honest yes then I see nothing wrong with that. I didn't mean to offend her or something like that. She is seen like she took it in wrong way or something like that.

As a parent myself, I can kind of understand why she reacted as she did. If I had for example posted a question about bottle feeding and then someone came along and asked whether I'd considered breastfeeding and asked all these questions about whether I hadn't tried hard enough or was my child happy with bottle feeding, then that would definitely put me on the defensive and make me feel attacked. Parents of young children are in quite a vulnerable stage generally and often worry about whether or not their decisions are the right ones. Sorry, you might feel you are right in what you said but that's the way things happen in communication.

I understand now. Thanks for pointed me out. I possibly will do exactly same thing if I have kids if anyone question my parenting style I might get defensive as well. That made a lot of sense now.

I think a better way would have been to have started a completely new post in the same forum.

You think I should go ahead start a new thread of it? I wasn't sure if I should start a new thread about it.

Interesting thread though. I found Alicia's response interesting. I think it would be positive posts like hers that would encourage parents to take up sign language, personally.

I agree. Only thing bothered me most about what she said about "best of friends". That part doesn't sounds right to me.

Anyway I don't want to discourage you. You obviously care about what you've said and that is great

Thanks! I apperciate your honest feedback. I learned a lot from that.

 

[MetroGuy03]

Nope, you're not missing anything. As a matter of fact, you understand it better than the people who are criticising you!

Thanks. I know. Sighs.

 

[jillio]

I'm deaf, don't have a CI, considering getting one, only thing that I'm worried about is the fact I haven't heard anything in 24 years and have virtually no memory of hearing.

I say to each their own. I have no problems with my deafness. I'm only considering CI's because I want to know what it's like to hear. Since I haven't heard in so long. So, for me, this is curiousity more than anything else.

I agree with MetroGuy. You probably don't have any conscious memory of hearing, but the auditory loop in the brain retains all that abiltiy if you once heard. Not to simplify it too much, but it is kind of like riding a bicycle. May take you a few minutes to get the movement coordinated again, but you still have the skill.

 

[freedom_33604]

I'm hoh and wear two BTE hearing aids. If my ability to understand speech gets worse, I DEFINITELY will consider a CI.

Cindy

Beethoven’s Ears