The Ugly Truth of CI

[jillio]

Your student what too? Or is that students as in plural? I am lost on your statement so can u clarify it pls? Thanks!

Sorry. The student I was talking about that said he probably would not get a CI if he had it to do over. He wants both sign and speech. He doesn't want to drop the sign just because he has a CI. But all but one of my students, with CI, with HA, raised orally, raised TC use a terp in class. Theonly one that doesn't is awoman who became deaf in her 20's. She has a moderate to severe loss, and uses a personal FM system.

 

[contradica]

I keep seeing this video pop up all over the place. I don't know sign very well but gathering from the general gist of conversation I am assuming that Matthew Fowler got implanted at 14 and has had medical problems ever since?

 

[deafdyke]

Even with most people receiving CI with no health issues, there are still people who have significent issues with the CI. It's a small percentage luckily. There is even a CI problem Yahoo! group.

 

[contradica]

What kind of medical problems though?

This is the kind of stuff that hearing parents need to hear but there is no way they can unless they know how to sign.

 

[Aleser]

What kind of medical problems though?

This is the kind of stuff that hearing parents need to hear but there is no way they can unless they know how to sign.

See, that's the thing. If they have a half responsible surgeon (or just one looking to cover his arse) they WILL learn all the nasty health risks that come along with sticking things into your child's head.

However, Deafness being deemed such a "handicap" by the medical profession, the risks of extreme side effects, including death, are worth it for the benfit: your child's so called normality.

I think that CI is a choice that every responsible older teenager or adult should be free to make. That said, I disagree with implanting children: the procedure has NO medical benefits- it will not save their life or make them healthier. Because of it's given risks, it should be left up to the person GETTING the implant.

I've met far too many people who hated their parent's choice of implantation.

 

[Kalista]

Hope, the congressmen will change new law to let the children become 18 years old to make their own decision.

I am very disappointed in medical opression on the parents. Deaf children are not deserve to change their idenity. It boil to my stomach, medical society pressure to the parents and schools.

 

[shel90]

What is he saying in the video. I am not good enough at sign to follow along. Thank you for helping.

Ok..this is not word for word..

This guy was born deaf and has learned to accept his deaf identity until around the age of 14 when his parents informed him about the CI. He told them that he didnt want it cuz he felt that he was fine with who he is but his parents, school and doctors kept pressuring him telling him that his life would be better with the CI. He said the pressure became too much so he gave in. On the day of surgery, as he was lying on the gurney just before he fell aslepp, he saw his mom and said his last words "Mom, I dont want it." then fell asleep. He woke up and he felt completely different. His face felt half numb and he discovered that the doctors took a large flap of skin off of his skull to insert the CI. *Showing his scar*. He felt like a different person as if his identity is gone.

Day of activation...got hooked up and yes he could hear but sooo many sounds were bombarding his brain overwhelming him. After that, it was all about speech speech speech so again he felt the pressure to develop good speech skills. It went on for years until he turned 18.

When he turn 18, he told his parents he decided not to wear the CI anymore. His parents were very angry with him and tried to convince him not to. He remained firm and told them that he is 18 years old and that it was his decision. He said he has been happier using ASL ever since.

Years later, he starts getting pain and headaches around the area of the incision. Eventually the headaches became so severe to the point where he cant function. He would sometimes vomit from the headaches. His wife described how she had to take care of him when he gets the headaches and how scared she is.



(I am sure I missed some things so anyone is welcome to fill any important points in)

 

[rick48]

Parents who make informed and researched decisions should be aware that there are people for whom the cochlear implant did not provide any benefits as there are now well over 60,000 people with cochlear implants.

As someone who went through the process and acted as a parent on behalf of my child (which one poster labels "force"), I can tell you that there was ABSOLUTELY NO pressure from the doctors, the audilogists, the speech and language therapists to implant our child, it was completely our decision which we deemed to be in her best interests. Further, all the risks were completely explained to us and ALL our questions were answered.

When our daughter needed to be re-implanted when she was 14, she was involved in that decision and we have left the decision to go bi-lat up to her.

As for attempting to prevent children from getting implants the militant Deafs have already tried and failed, we defeated them then and we will do so again if needed, only this time we will have thousands more children who have benefited from their cochlear implant.

 

[GalaxyAngel]

His parents kept pressuring him.. includes his school kept pressuring him and also his counselor pressure him too... Imagation that! My god.. Made me sick why they are kept constantly pressure him... He gave it up and have no choice to make his decision.. until he lay on the table.. look up his mom.. say.. "I don't want to" *snap finger* fall sleep! Next day, He wasn't happy and felt so horrible full of numb and even pain several times.. He have patience through speech and so many different... wasn't happy afterall because he had bad headache... Until turned 18 yrs old.. finally he spoke out his rights and unwanted wear ci for good.. His parent really quite angrily and unhappy.. wanted him stay continue.. He refused...
Sad News, He gotten into worst pain pain, vomitting, miragines or headache really bad! Since he kept contstantly gone for hospital... even his wife really find concern about his health condition isn't quite good... Asking for everyone please DON'T PRESSURE YOUR CHILDREN OR TEENAGER to get CI.. advise that! that's all

Why doctor ain't tell truth about side effects ? Is possible RED FLAG/RED TAPE TOO.

 

[shel90]

His parents kept pressuring him.. includes his school kept pressuring him and also his counselor pressure him too... Imagation that! My god.. Made me sick why they are kept constantly pressure him... He gave it up and have no choice to make his decision.. until he lay on the table.. look up his mom.. say.. "I don't want to" *snap finger* fall sleep! Next day, He wasn't happy and felt so horrible full of numb and even pain several times.. He have patience through speech and so many different... wasn't happy afterall because he had bad headache... Until turned 18 yrs old.. finally he spoke out his rights and unwanted wear ci for good.. His parent really quite angrily and unhappy.. wanted him stay continue.. He refused...
Sad News, He gotten into worst pain pain, vomitting, miragines or headache really bad! Since he kept contstantly gone for hospital... even his wife really find concern about his health condition isn't quite good... Asking for everyone please DON'T PRESSURE YOUR CHILDREN OR TEENAGER to get CI.. advise that! that's all

Why doctor ain't tell truth about side effects ? Is possible RED FLAG/RED TAPE TOO.

I know I agree! Despite what some people say here, there are parents who do NOT make well-informed decisions regarding implanting their children.

 

[rick48]

I know I agree! Despite what some people say here, there are parents who do NOT make well-informed decisions regarding implanting their children.

And the reverse is just as true, there are parents who do NOT make well informed decisions regarding NOT implanting their children.

You and some people here seem to have a tough time grasping that concept.

So my advice is for parents to get as much information as possible, do their research, speak to as many deaf adults as possible, speak to as many parents of deaf children as possible, see as many implanted and non-implanted children as possible, question the doctors, the audiologists, etc.

To quote Emile Faber; "Knowledge is good"

 

[rockdrummer]

Some of my former students have told me the same thing but yet, there are others that have told me that they cant live without their CIs.

Funny thing is that all of them want both speech and ASL.

Why is that funny. My guess is that they want to be a part of both worlds. What's wrong with that? From my perspective that seems to be the logical choice.

 

[shel90]

And the reverse is just as true, there are parents who do NOT make well informed decisions regarding NOT implanting their children.

You and some people here seem to have a tough time grasping that concept.

So my advice is for parents to get as much information as possible, do their research, speak to as many deaf adults as possible, speak to as many parents of deaf children as possible, see as many implanted and non-implanted children as possible, question the doctors, the audiologists, etc.

To quote Emile Faber; "Knowledge is good"

If the reverse is just as true, then I guess my mom made a big mistake not implanting my brother and I ...lol!

I was referring to the headaches and stuff ..sometimes some parents dont cosider those factors and all they could think is "hearing" "hearing"

The key word is "some" and that is based on my experience.

 

[shel90]

Why is that funny. My guess is that they want to be a part of both worlds. What's wrong with that? From my perspective that seems to be the logical choice.

Cuz of another POV commenting about how some deaf kids choose to drop ASL..I was saying that funny, I have never seen that happen so I guess it must be a rare thing.

 

[jillio]

And the reverse is just as true, there are parents who do NOT make well informed decisions regarding NOT implanting their children.

You and some people here seem to have a tough time grasping that concept.

So my advice is for parents to get as much information as possible, do their research, speak to as many deaf adults as possible, speak to as many parents of deaf children as possible, see as many implanted and non-implanted children as possible, question the doctors, the audiologists, etc.

To quote Emile Faber; "Knowledge is good"

And my advise to parents would be to see your deaf child as a holistic being who is so much more than mouth and ears, and to concetrate not on changing your child, but on advocating and changing societal attitudes, predjudices, and discriminatory practices so that invasive surgical procedures are not required to function and integrate into the greater society as whole, capable, intelligent human beings. Deafness is not a disease to be treated, it is a way of being that requires accommodation.

 

[jillio]

If the reverse is just as true, then I guess my mom made a big mistake not implanting my brother and I ...lol!

I was referring to the headaches and stuff ..sometimes some parents dont cosider those factors and all they could think is "hearing" "hearing"

The key word is "some" and that is based on my experience.

Very seldom are all of the variables considered prior to making a decision to implant, and we have discussed the reasons for that in numerous threads.

 

[rick48]

Cochlear implants do not change individuals so if one thinks that then they have demonstrated how little they know about cochlear implants and even less about the parents who chose them for their children. These people should be the last people giving parents any advice. Deafness is not a disese and cochlear implants are not a treatment but rather a device that gives the deaf opportunity to hear sounds.

BTW its a shame how some people only view the deaf as a pair of hands, what a shame! Why not try viewing a child, deaf or not, as a person to whom you have the awesome responsibility and obligation of giving them all that you are capable of to allow them to be all that they can be?

 

[Angel]

Hope, the congressmen will change new law to let the children become 18 years old to make their own decision.

What happens if children need a major surgery for varies of reason or needs vaccines?

 

[Kalista]

What happens if children need a major surgery for varies of reason or needs vaccines?

I am talking about a healthy Deaf baby. Do the baby needs a surgery for cochlear implant?

 

[jillio]

Cochlear implants do not change individuals so if one thinks that then they have demonstrated how little they know about cochlear implants and even less about the parents who chose them for their children. These people should be the last people giving parents any advice. Deafness is not a disese and cochlear implants are not a treatment but rather a device that gives the deaf opportunity to hear sounds.

BTW its a shame how some people only view the deaf as a pair of hands, what a shame! Why not try viewing a child, deaf or not, as a person to whom you have the awesome responsibility and obligation of giving them all that you are capable of to allow them to be all that they can be?

The whole purpose of an implant is to change the individual from more deaf to less deaf. Of course the change is directed at the deaf person. You are deaf, so lets employ a surgical intervention to change the fact that you are deaf. To say that it doesn't focus the impetus for change on the individual is absurd. If the change were focused on making the environment less disabling, the change would come outside of the individual...such a parents learning sign language.

And you continually preach about giving a child all opportunity, yet you restricted your own child to an oral only environment. That, in and of itself is evidence that you, in philosophy subscribe to the biomedical definition of disability and all of its implications. One of the most important implications inheentin the model is that causation and solution are placed on the individual with the disability and that the environment is released from the responsibility to accommodate. The individual with the disability is expected to accommodate the non-disabled population.