Why - Why the Medical Society constantly pressure on the Parents?

[jackiesolorzano]

Here we go again. :roll:
First of all...I hate it when people talk about deaf people and make a judgment that ALL deaf people feel this way. We (and i'm saying ALL deaf people) are not lemmings. We don't follow one rule.

Secondly - I'm deaf, I am fluent in sign language and spoken language. However, ENGLISH is my primary language, not ASL. So be careful when you use "our" as all of us. There's quite a few people on this forum that are deaf and doesn't sign/learning how to sign, and English is their primary language.

Thirdly - I believe I tried very...no, let me revise that...I believe I DID do hard enough in the real world. Face it. We will be a minority, and we will ALWAYS be a minority, unless there's some Borg cube that's coming to assimilate all hearing people leaving the deaf people on Earth. I have TWO college degrees, and I'm getting a third in Game Design (so yeah, I stay home and play video games all day because it's MY JOB). I think it's some people (not naming who :roll is not TRYING HARD ENOUGH or feel like they can't do anything. My boyfriend, who is hearing btw, push me as hard as I can because I can do ANYTHING I WANT and never allowed me to have my deafness as a barrier.

Lastly - I can speak, but I can't hear. Many deaf people who cannot speak well is due to lack of training in using their voice. ALL DEAF people (within reason), have perfectly good voice box. It's just the lack of training in this area. So revise that to Deaf people can do ANYTHING, but hear.

We can go on and on about this debate/contriversal issues and it will never end. Accept the fact that the world is changing, and I, personally, have seen many hearing elementary schools that are teaching the children sign language and a little about deaf culture. They're not perfect, but they're trying. Better than 30 years ago, don't you think? What does all this come down to? EDUCATION! ASL is being taught at H.S. all over the country, as well as colleges as a foreign language. Did that happen 15-20 years ago? No.

I could go on and on, so I'm not going to do that...yet.

GREAT POST

 

[jackiesolorzano]

An open challenge:

Can you please name any medcal doctors or professionals who are stating that deaf indviduals who receive cochlear implants are no longer deaf? Name one, so we know whether your statement is true or whether you are just making it up to bolster your position.

I have personally talked to cochlear surgeons such as Simon Parisier and Noel Cohen to name a few. I have personally talked to professionals in the field such as Suzanne Walzman, Bill Shapiro, Pat Chute, Dianne Brackett, to name a few more. I have attended many seminars, lectures and/or presentations over the years where I have heard not only these people speak but others such as Ellen Rhodes, Jean Moog, Thomas Balkany, Myimoto, Geers, Ganz and many others and not once did any of these doctors and professionals EVER say that a deaf person who receives a cohclear implant is no longer deaf.

So, please answer the very simple question: give us the name of someone, anyone who is a doctor or a professional who says a person receiving a cochlear implant is no longer deaf?

The only one perpetuating this myth about doctors, professionals and cochlear implants are those who are opposed to cochlear implants.

Rick you have name some people I think in the mid west. I am finishing a 2 week training on cochlear implants our here is the west. Let me name some people that are in full support of cochlear implants. All of these people have told us to make sure that parents have realistic expectations. They all mention how the implant does not take away the deafness, how the implant is just a tool that can be very successful if use properly with the right expectations. Some of these people and institutions are Dr. House, Dr Luxford, Mary Ellen Nevis, Jean Weingarten School, John Tracy Clinic, CEI, House Ear Institue. In my 17 years as a parent of 2 implanted teenagers and my 8 years of teaching children with implants, I have heard anyone say that implants will take away the deafness.

 

[jackiesolorzano]

And you base that unsubstantiated statement upon what factual basis? How many hearing parents of cochlear implanted children have you ever had a conversation with? Please enlighten us all with your extensive knowledge and background regarding parents of children with cochlear implants.

BTW while you are at it please explain why deaf parents of deaf children are also choosing cochlear implants for their children? Are they also taking the "easy way out"?

I met a family this past week that both mom and dad are deaf and there 2 children are deaf. Parents first implanted both children and then they got implanted too. They come from a family of many deaf members.

 

[jackiesolorzano]

The cochlear implant is one of the more intriguing technologies that the FDA regulates. It terms of its medical effectiveness, the device is truly revolutionary. Before this technology hearing impaired individuals were consigned to amplification devices that ameliorated only some of the symptoms of deafness, and did nothing towards the actual causes. This technology has the promise to actually cure hearing impairment and allow people to hear sounds and tones that were previously impossible to duplicate.

There you go. From a paper presented at Harvard University.

What you posted came from Harvard University but who said this statement.

 

[jackiesolorzano]

I am sorry, you feel this way. I have no against you or other adults's make the decision. I do respect your wishes, I am talking about the hearing parents who make the decision for their babies like 6 months old to 13 years old.

Why do you feel that I was a personal attack your desicison? Did I mention adult's cochlear implants?

So you are not attacking Vallee decision to get implants but you are attacking my decision to implant my children. I made an informed decision. It was not because I did not want them to be involved in the deaf world. I wanted to give them the option of being oral or now if they choose they can turn off their voice and immerse themselves in the deaf world. I wanted them to have choices. You say that if my children wanted to implant them when they are adults that would be OK but then it would have been to late for them to be oral if that was their choice.
It really doesn't matter what you think or anyone else. Do you honestly think that the governement would ever side with the Deaf culture in regards to the decisions that parents can make for their own child.

 

[jackiesolorzano]

Great Statement Jillio!! for being brave enough to state the raw unvarnished truth!

re: Kalista question --

I think the medical community pressures parents because they can, simply, they prey on the vulnerability and guilt that society bestows on those ""out of the norm"" and promotes a one size fits all fix that too many find out too late - doesn't work.

The medical community does not put pressure on parents. Have you ever gone thorugh the preimplant process no, I have and I never felt any pressure. They informed me of the choices I can make for my children.

 

[jackiesolorzano]

While I do agree that I do not like to see cochlear implants in babies but to 13 years old? why is that? it's better to have it done when they're younger it gives these deaf children an opportunity to hear the sounds when one cannot benefit from hearing aids. It's all about opened up of the different opportunities that are out there to gives a deaf child a chance to hear better.

I do not think that cochlear implants are for everyone yet I do believe that parents have the right to choose.

Angel I agree with you 100%, implants are not for everyone but if parents are going to get one they should get kind of soon to help develop oral language.

 

[jackiesolorzano]

Some hearing parents did get the opportunity to meet other deaf adults/children and mix within along the deaf community to get advice, help and support and are aware of sign language and would like their deaf child with cochlear implant to learn it as they were given the opportunity to do so as it would benefit both themselves and their deaf child.

I've been reading hearing parents of the deaf children with cochlear implant's blogs, and my question to you is.... have you? (no offense here really) but I prefer you to look at this from both sides.

What I think is the biggest issue here some deaf people are still opposed to cochlear implants because it is seen as another way of denying a child’s deafness but that's not the case, it's all about giving a deaf child the ability to hear more when they cannot benefit well with hearing aids yet I absolutely see nothing wrong with that whatsoever.

RIGHT ON ANGEL, it is so wonderful that you are trying to see things from both sides. And people like are the ones that I make a huge effort to have in my children's lives.

 

[jackiesolorzano]

There have been a number of babies that have failed not just one newborn screening, but follow up screenings, as well. Plus, it is difficult, without response testing, to know where the hearing loss lies in terms of frequency and dB. Likewise, an infant this age cannot respond to word discrimination testing, and that is an extremely important variable when determing benefit from HA.

I mean, would you put a kid under surgery to cure an illness that antibiotics would treat without giving the antibiotics time to do their job first?

Good Implant centers do not implant until they are 100% sure that the child has a severe to profound hearing loss. Do you know of any babies getting implant and they ended up being hearing. I know that I do not know of any.

 

[jackiesolorzano]

Likewise we experienced no pressure from doctors to have our daughter implanted nor did any of our friends, if anything, our doctor and our implant team downplayed what we could expect from the cochlear implant.

It is the parents obligation to get themselves informed about the various options and choices that are available to their child. There are some who do not but the overwhelming majority of parents do and act in the best interests of their child, whatever the choice they make is.
Rick

You are so right Rick. When I meet parents thinking of implants for their child, I always make sure to tell them that their child will still be deaf. That the implant can be a wonderful tool but it is just a piece of the puzzle.

 

[jackiesolorzano]

Who stated this opinion. I wanted to know the person who stood up at Harvard and said this.

Vallee, I want to know the answer too. I bet it is someone who has very little experience with cochlear implants. They need me to educate them on the usefulness of the implant and how it cannot and will not ever take away the deafness.

 

[jackiesolorzano]

That statement says volumes. We are still deaf, we still have issues with sounds we hear and sounds we can say. It is not magic and it goes away.

When are a small group of people going to give parents credit!

You are right Vallee but the other thing to think about her comment which I pasted at the end of this post, this when did these kids get their implants, what type of support they get to help them.

Originally Posted by Kalista
Do you know what.... My son was interact with other teenager Deaf children who have cochlear implants at the organization few months ago. My son shocked because their pronounce aren't properly. He wonder why the parents put cochlear implants when they were babies. Cochlear implants do not help Deaf children learn how to speak like hearing people. CI would never never cure for the Deaf children to be normal hearing like YOU.

Sorry, if you feel this offense. I am sick of hearing parents do not look other side bright what we have achievement in our education and career. hello??? It is very frustrated many other hearing parents did not try very hard to approach into Deaf Community. Why why they look at doctors than Deaf people ??? Tell me why?

 

[jackiesolorzano]

Read the article "Falling on Deaf Ears" that I posted for Kalista to read..it mentioned a Deaf mother who got taken to court in 2002 for neglecting her children because she did not get them implanted. I was like when I read that.

Here is a portion of the article

Consider the case of Michigan resident Lee Larsen, the deaf mother of two deaf sons whose custody dispute became an internationally publicized Deaf rights case in 2002. Larsen landed in court after school officials claimed she was neglecting her children, and a year later, court-appointed advocate Joseph Tevlin petitioned the Michigan court system to order implants for her two sons, asking, “Is it neglect not to have a cochlear implant when the bulk of the research shows everyone benefits?”

If hearing parents want their rights to choose then Deaf parents should have the same. I cant believe that such a case went to court.

Shel, I read this article a long time. It was just so wrong. How can a court system tell a parent what to do with their child. It didn't matter that the kids were in foster care at the time. The mom still had full custody of her children.

But it is the same thing that many of you do here trying to tell us what is right for our children. You have no right tell me or any other parent that we should not implant our child. You shoudl tell us to make informed decision to speak to people on both sides but do not try to make our decisions for us. In the case you are talking those kids should not get implants because mom is from a deaf family and more importantly she did not want that to happen to her kids. Her choice should be respected.

 

[jackiesolorzano]

According to the article, the school officials took the mother to court. To me, that is frightful...if I had a deaf child and didnt implant my baby, would I have to worry about being taken to court by school officals?

I am just quoting what I read. Not my words.


The results of that case is mentioned at the end of the article.

BTW..good posting u made before.

I just wonder why the critera for implantation is getting lowered? Isnt that risky considering the validity of the hearing tests or the unknown of infants' success with HAs? Just my concern.

The case was wrong but when her kids were in foster care when this happen it doesn't make it right though.

 

[jackiesolorzano]

FYI the case was ultimately dismissed as the court ruled in favor of the parents and the parents' right to make decisions on behalf of their child. It is a decision with which I totally agree and consistent with what I and many other parents have maintained--that we have the right, the responsibility and the obligation to make decisions on behalf of our children.

RIGHT ON, a parent has the right to make an informed decision. I remember reading about this case. It was just so wrong.

 

[Liebling:-)))]

Originally Posted by Aleser
The medical perspective is that Deafness is deviation from the norm, in a way that is not positive, as it is the loss or absence of a sense otherwise expected in humans.

I don't agree with cochlear implantation in infancy. I don't agree with fixing people who never were broken.

But I understand doctor's viewpoints. That's all they know- that is the best of their understanding and years of training.

No, we are not saying that CI will destroy Deaf culture. What we are saying is that medical professionals need to understand that persons who receive a CI are still deaf, and that deafness does not end with a CI. To date, medical professionals see the only solution as medical intervention. They do not include psychosocial aspects in their viewpoint.

*nodding agreement*

 

[Liebling:-)))]

Kalista, u might want to read this. Very interesting article relating to your topic.

Falling on Deaf Ears

Yes, very interesting article!!!

Yes, I agree that CI doesn't mean to make deaf children act normal hearing. They still support deaf children with CI or HA with sound and speech therapy. For normal hearing children, they do not need to support with sound and speech therapy. A lot of parents thought mistake that CI could make deaf children act like normal hearing children.

Yes, in that article written - a mother accept the fact that her daughter is still deaf. She learn ASL and want ASL with her daughter but her daughter choose oral. She accept her choice.

I beleive in accept what my child is and child's choice.

 

[Liebling:-)))]

We were like *sigh* when we saw frequent commerical over CI issues. Few minutes movie...

The parents *hoping expression* that their son can hear them... The therapy told the parents to speak their son's back behind... They did and happy with weepy when their son turn around and look at them... "He can hear" with excitment expression and show the picture of CI techonolgy and written check with any healthcare insurance companies for detail.

No, wonder that a lot of children receive CI here in Germany because heathcare insurance pay full and 110%.

:roll:

 

[Liebling:-)))]

Should we really be blaming the doctors?

It's the parents that mold the children's future.

If the parents don't want their children to get cochlear implants, all they have to do is say... "no".

If the parents do allow their children to get cochlear implants, but still want their deaf children to maintain their deaf identitiy... then they simply ensure that their children are well taught on deaf culture.

Good question.

Yes I would not say to blame the doctors for that but parents but the doctors are allows to influence parent's decision.

My personality POV: The parents need to focus on both sides instead of one side but it's parent's decision for take one side or both sides.

 

[Liebling:-)))]

Originally Posted by Kalista
I am sorry, you feel this way. I have no against you or other adults's make the decision. I do respect your wishes, I am talking about the hearing parents who make the decision for their babies like 6 months old to 13 years old.

Why do you feel that I was a personal attack your desicison? Did I mention adult's cochlear implants?

So you are not attacking Vallee decision to get implants but you are attacking my decision to implant my children.

Please re-read Kalista's post carefully.

Kalista is against parent's decision on CI for their deaf children. She respect Vallee's decision because he as an adult choose CI, not his parents.