The Ugly Truth of CI

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shel90 said:
Right that's why I said "those" hearing people who treated us like 2nd class citizens growing up if we didnt make it on their pedestal.
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Those are also the same people who make everyone feel like 2nd class citizens. I have said this before, but these are the same people in positions of authority or power.

Night all:)
 
I really object to having the babies and children to be force to go through CI surgery. I don't want the Deaf children to suffer. I do watch a video from Canada Hearing newsletter with video. We do have a different person talking about the Ugly Truth of CI. Right now, he said that there is a way for unhappy CI users to go online from the Food and Drug Administration with Medwatch for Inbox. Medwatch would like all of unhappy CI users to explain to them about their bad experience of using the CI by surgery. We might be able to stop CI on anyone who was force to get CI surgery. To me, it is really the hearing people especially hearing parents wanting so much to have us be hearing. That is their pipeline dream. You can not make us hearing no matter how struggle we, deafies, have to struggle to try to please you and it is not working. So all hearing parents have to do is to accept our deafness and let us go the way we are. We accept our deafness no matter what. If you are not happy with the CI. Here is the Web address for the Medwatch with the Inbox.


www.fda.gov/medwatch/inbox


I hope we, deafies, don't get pressure from hearing people who are want so bad to have us be hearing like them. Some parents want to work and save money to give a deaf child hearing when the deaf child or teenager say "NO!". They don't like to be force to do what the hearing people want them to. That is the wrong decision. Just wait for them to grow up and the deaf or hard of hearing teenagers or adults can make decisions on their own. But if the CI is not working for them, then they have to let the Medwatch know that they are not happy with it. So, back off. :pissed:
 
Bebonang said:
I really object to having the babies and children to be force to go through CI surgery. I don't want the Deaf children to suffer. I do watch a video from Canada Hearing newsletter with video. We do have a different person talking about the Ugly Truth of CI. Right now, he said that there is a way for unhappy CI users to go online from the Food and Drug Administration with Medwatch for Inbox. Medwatch would like all of unhappy CI users to explain to them about their bad experience of using the CI by surgery. We might be able to stop CI on anyone who was force to get CI surgery. To me, it is really the hearing people especially hearing parents wanting so much to have us be hearing. That is their pipeline dream. You can not make us hearing no matter how struggle we, deafies, have to struggle to try to please you and it is not working. So all hearing parents have to do is to accept our deafness and let us go the way we are. We accept our deafness no matter what. If you are not happy with the CI. Here is the Web address for the Medwatch with the Inbox.


www.fda.gov/medwatch/inbox


I hope we, deafies, don't get pressure from hearing people who are want so bad to have us be hearing like them. Some parents want to work and save money to give a deaf child hearing when the deaf child or teenager say "NO!". They don't like to be force to do what the hearing people want them to. That is the wrong decision. Just wait for them to grow up and the deaf or hard of hearing teenagers or adults can make decisions on their own. But if the CI is not working for them, then they have to let the Medwatch know that they are not happy with it. So, back off. :pissed:
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Hey Url isn't working.. can you find correct path url please.
Thanks.
 
Angel said:
Yes I got it now, I'm trying to read between the line, but somehow I got lost.
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I just need to be more clear when I explain. Sometimes it is hardto get the meaning in a written post. Plus, I am trying to multitask tonight, so I'm not giving my whole concentration to some of my posts.
 
vallee said:
It is terrible you had that experience. I didn't, but I respect your experiences. I just don't believe that taking away hearing aids and Cochlear implants is the answer. I don't know what the answer is.
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That's just it. No one wants to take away CI and HA. We want to add a strong foundation of ASL. The answer is a shift away from the medical model for the definition of disability, the inclusion of people with disabilities in research design to insure that the proper hypothesis is being investigated,the involvement of people with disabilities in policy formation to insure that their needs are being addressed from the proper perspective, a shift in power differential from "expert" as in professional to "expert" as in the person who lives with the disability, and the empowerment of people with disabilities to self determine and participate fully in decisions regarding their lives. That will eventually result in reduced stereotypes, reduced unintentional discrimination and bias, and a change in societal attitudes toward individuals with disability.
 
vallee said:
Those are also the same people who make everyone feel like 2nd class citizens. I have said this before, but these are the same people in positions of authority or power.

Night all:)
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And that is exactly why we have to advocate from a pespective that will promote a shift in power.
 
wow, all of you were here until one o clock a.m. to debate. :D It seems forever to sit on the chair and drink bunches of coffee cups to debate until we find fact the answer to bring it up to Washington, DC to send all the letters to the congressmen and FDA. ;)

We should work in the White House.
 
Kalista said:
wow, all of you were here until one o clock a.m. to debate. :D It seems forever to sit on the chair and drink bunches of coffee cups to debate until we find fact the answer to bring it up to Washington, DC to send all the letters to the congressmen and FDA. ;)

We should work in the White House.
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We will never work in the White house, why this is the same adminstration that also believes that students with disabilities and ELL should be 100% proficient on state testing. No Child Left Behind is the biggest mess and should be called All Child Left Behind. (my opinion)

The problem is there is no answer - we forget to take into account that every child and adult is different. We can't give a uniform policy. I'm oral and love it. Your ASL and love it. I am against being told I should have learned ASL to function. Your against being told you must be oral. I would never be able to put my child in a residental school. Also not all children are visual learners. Some are auditory(me) and Kinesthetic or even tactile. We have to take into account that not all children or adults will fit the in one group.

So what I see in this forum is instead of working together we isolate and form groups the anti and for. Instead of empowering parents and adults in choices and resources. We should never force people to pick sides. They should be able to have the best of both sides. If they make a choice for CIs then they should be able to be welcomed and encouraged. I kept seeing medical professionals bashed. My doctors and audiologicst have been the best. Even back to the ones I had in college.

Instead of celebrating our diversity, we encourage uniformity.
 
Bebonang said:
I really object to having the babies and children to be force to go through CI surgery. I don't want the Deaf children to suffer. I do watch a video from Canada Hearing newsletter with video. We do have a different person talking about the Ugly Truth of CI. Right now, he said that there is a way for unhappy CI users to go online from the Food and Drug Administration with Medwatch for Inbox. Medwatch would like all of unhappy CI users to explain to them about their bad experience of using the CI by surgery. We might be able to stop CI on anyone who was force to get CI surgery. To me, it is really the hearing people especially hearing parents wanting so much to have us be hearing. That is their pipeline dream. You can not make us hearing no matter how struggle we, deafies, have to struggle to try to please you and it is not working. So all hearing parents have to do is to accept our deafness and let us go the way we are. We accept our deafness no matter what. If you are not happy with the CI. Here is the Web address for the Medwatch with the Inbox.


www.fda.gov/medwatch/inbox


I hope we, deafies, don't get pressure from hearing people who are want so bad to have us be hearing like them. Some parents want to work and save money to give a deaf child hearing when the deaf child or teenager say "NO!". They don't like to be force to do what the hearing people want them to. That is the wrong decision. Just wait for them to grow up and the deaf or hard of hearing teenagers or adults can make decisions on their own. But if the CI is not working for them, then they have to let the Medwatch know that they are not happy with it. So, back off. :pissed:
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Just take off the inbox part and you get to the site. It is also the site you use to let them know you had an adverse reaction to yeast or any other drug. It is submitted and investigated.

Wish there was a site to let the goverment know how much I love my CIs.

posting from the site
Cochlear Implants

Audience: ENT specialists, pediatricians, infectious disease specialists, other healthcare professionals, consumers
[Posted 10/10/2007] FDA informed healthcare professionals and consumers that the Cochlear Implant device used in profoundly deaf or severely hard-of hearing patients has been associated with some increased risk of bacterial meningitis caused by Streptococcus pneumoniae. Children implanted with Cochlear Implants with a positioner component are at a greater risk. There were two cases of deaths from meningitis within the past year in children, ages 9 and 11, implanted with cochlear implants with positioners. Neither child was fully vaccinated, and one died because of the lack of vaccination.

FDA reminds healthcare professionals and consumers that recipients of this device must be fully immunized according to the Center for Disease (CDC) vaccination recommendations. Because children with Cochlear Implants are at increased risk for pneumococcal meningitis, CDC recommends that they receive pneumococcal vaccination under the same schedules that apply to other individuals at high risk for invasive pneumococcal disease.

[October 10, 2007 - Public Health Notification - FDA]
[October 10, 2007 - Advice for Patients - FDA]
 
vallee said:
We will never work in the White house, why this is the same adminstration that also believes that students with disabilities and ELL should be 100% proficient on state testing. No Child Left Behind is the biggest mess and should be called All Child Left Behind. (my opinion)

The problem is there is no answer - we forget to take into account that every child and adult is different. We can't give a uniform policy. I'm oral and love it. Your ASL and love it. I am against being told I should have learned ASL to function. Your against being told you must be oral. I would never be able to put my child in a residental school. Also not all children are visual learners. Some are auditory(me) and Kinesthetic or even tactile. We have to take into account that not all children or adults will fit the in one group.

So what I see in this forum is instead of working together we isolate and form groups the anti and for. Instead of empowering parents and adults in choices and resources. We should never force people to pick sides. They should be able to have the best of both sides. If they make a choice for CIs then they should be able to be welcomed and encouraged. I kept seeing medical professionals bashed. My doctors and audiologicst have been the best. Even back to the ones I had in college.

Instead of celebrating our diversity, we encourage uniformity.
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Outstanding post and you have made several compelling points of which I have been saying about everyone being different. It's also why I believe the educational approach should fit the child and not the other way around.
 
jillio said:
The whole purpose of an implant is to change the individual from more deaf to less deaf.
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Wrong. A deaf person who because of a cochlear implant has access to sound that they previously did not have is not "less" deaf but a deaf person who has access to sound that they previously did not have.
 
jillio said:
, yet you restricted your own child to an oral only environment.
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Once again, you have demonstrated your unhealthy obsession with my child and how she was raised. You have also lied, as is usual.

I have said many times that since she was first diagnosed, my daughter has been around deaf adults and deaf children. She has many deaf friends and enjoys being with them.

Please stop lying about a child whom you have never met.
 
vallee said:
We will never work in the White house, why this is the same adminstration that also believes that students with disabilities and ELL should be 100% proficient on state testing. No Child Left Behind is the biggest mess and should be called All Child Left Behind. (my opinion)

The problem is there is no answer - we forget to take into account that every child and adult is different. We can't give a uniform policy. I'm oral and love it. Your ASL and love it. I am against being told I should have learned ASL to function. Your against being told you must be oral. I would never be able to put my child in a residental school. Also not all children are visual learners. Some are auditory(me) and Kinesthetic or even tactile. We have to take into account that not all children or adults will fit the in one group.

So what I see in this forum is instead of working together we isolate and form groups the anti and for. Instead of empowering parents and adults in choices and resources. We should never force people to pick sides. They should be able to have the best of both sides. If they make a choice for CIs then they should be able to be welcomed and encouraged. I kept seeing medical professionals bashed. My doctors and audiologicst have been the best. Even back to the ones I had in college.

Instead of celebrating our diversity, we encourage uniformity.
Click to expand...

Powerful!

vallee,

To answer your question from the other day, I hope I would be strong enough to handle her decision ( I am still trying to come to grips with the third earring!) not to use her cochlear implant and I cannot say that I would not discuss it and want her to explain the reasoning behind her decision but ultimately I would accept it for our goal was to raise a child who could make her own decisions and become a resposible adult.

Take care,
Rick
 
rick48 said:
Powerful!

vallee,

To answer your question from the other day, I hope I would be strong enough to handle her decision ( I am still trying to come to grips with the third earring!) not to use her cochlear implant and I cannot say that I would not discuss it and want her to explain the reasoning behind her decision but ultimately I would accept it for our goal was to raise a child who could make her own decisions and become a resposible adult.

Take care,
Rick
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:)
 
shel90 said:
I know I agree! Despite what some people say here, there are parents who do NOT make well-informed decisions regarding implanting their children.
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I agree with you Shel, there are parents that do not have all the information in order to make an informed decision. This is not the parents fault. There are some implant centers that do not follow the same model as other implants. Where my children received their implant there is a complete team meaning a doctor, audiologist, SLP, education liasion, and a psychologist/social worker. The pre-implant process takes about a full week of appointments with each member of the team. I know of an implant center close by that does not follow this type of model. They only have a doctor and an audiologist that has very little experience with children. They are implanting children they shouldn't and are not giving parents all the information.
So what I think what should happen is that there should be only one model of doing the pre-implant process and all centers must follow and have the same team members has all other implant centers.
As for me deciding to implant my children it was my decision and I made an informed decision. With my son it was completely my decision since he was 3. With my daughter who has a lot more hearing then my son, she was implanted at the age of 11. I did not put pressure on her nor did anyone else. We gave her the information. She talked to her doctor and her audiologist. I told her why I thought it would help her. It was her decision. I told her that I wanted her to get implanted but if she did not want to it was OK with us.
 
Kalista said:
I am talking about a healthy Deaf baby. Do the baby needs a surgery for cochlear implant?
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Do you really think that a congressman is going to try and pass a law to tell me that I the parent of 2 deaf children cannot have my children implanted. NOW COME, you must be dreaming.
I would be all for something like making sure that all parents thinking about getting an implant have to go through some classes to make sure they understand the benefits and the risks. Parents need to know that the benefits depend on many factors strongest being them and how they work with their child.
 
Angel said:
I'm so shocked to get that kind of respond from you Jillio, no government is going to tell me what choice or decision I make for my own children.
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RIGHT ON Angel, No one is going to tell me the choices I need to make for my children. While I agree with many of you there are parents that make uninformed decisions. This is what needs to change. There needs to be one universal model that all implants center have to follow.

I made informed decisions for my children. I spoke to deaf children or Deaf adults. I spoke to Deaf adults. I spoke to oral deaf adults. And I read everything there was to know about implants. It was not an easy decision to make but I am so happy I did.

I am not trying to take my children's deafness away. Many people including Deaf adults have told my children that they are hard of hearing. I have always told my children they are deaf. That they are HH with their devices on but they are born deaf and they will die deaf.
 
Kalista said:
Would you get a cochlear implant on your Deaf child even he/she is healthy baby and Deaf son or daughter?

We were debate how much we were so furious with many parents because they do not realize how brilliant Deaf people out there with successful careers and education. Why do we need cochlear implant on many innocence Deaf children. We need to education to many Parents to meet with more Deaf people to look at other side like we do good parents, jobs, etc...

Why why do they get ci on 18 months old children, there is not medical reason as emergency from Deaf to hearing. No !!! I disagree with the medical decision by the parents to make their Deaf children become hearing. That is full of B.S.
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I am not saying all deaf babies need to get an implant but what I am saying if a deaf baby is going to get an implant the earlier the better. The reason is that that purpose of an implant is to help develop oral language then a deaf baby needs to get implant as soon as possible so they do not lose any more time in being exposed to oral language. Maybe you are not aware but there are babies getting implant at 12 months.
 
Kalista said:
I was referring to Congressmen need to change new law. It is regarding to the cochlear implant, it considers not a medical reason for the parents who make the decision on their Deaf children. Just like to replacement brown eyes to blue eyes because parents are not acceptable for who their children are.

Deaf to Hearing consider is not medical reason... My point many parents are ashame on themselves because their children are abnormal due to Deaf. They want their children to be like them as hearing status.

I feel that government needs to wake up because many Deaf children are unhappy with their cochlear implants when they become adults. They did not ask for it... It is parents !!!
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You are making judgments about parents. Have you spoken to parents that have made the decision to implant their child.
I have. As for me I am not ashamed of my amazing, brilliant teenagers that are deaf and have implants. I am so proud of them.
I decided to implant my children to give them more choices in life. My children if they want can go into the hearing community. Or if they want into the Deaf community.
 
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