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

[jackiesolorzano]

How would you know if they ended up being hearing jackie, if residual hearing is destroyed during the surgery? Once they are implanted, they are most certainly profoundly deaf. But the point is, if you will go back and reread my post, that responsive testing is innacurrate prior to the age where a child is developmentally capable of responding. While a child may be severe to profoundly deaf, it is impossible to discern other variab les such as discrimination with an HA without some form of responsive testing.

Answer my question do you know of any children that were implant that it was later found out that they were hearing. And while the implant use to always wipe out all hearing, that is not the case now. ABout 1/2 of kids now that are implanted their hearing is not wipe out. Just learned that information this past week. And so they implant one ear how about the other ear does it wipe the hearing in the ear that is not implanted. And my son's hearing was wipe out because he was implanted in 1995 but my daughter who was implanted with newer technology in 2001, her hearing was not wiped out.

 

[jillio]

First you say one thing and then you say another thing. First you say that medical professional put pressure on us and then when I told you that I did not feel pressure then you said I did not feel pressure because I already saw my children as needing to be fixed. And so you know what was going on in my head during this time frame. My first reaction when my children were diagnosis was to take A ASL class. My children's first teacher was a TC teacher. My first information in this new world was from people in the Deaf community. I did not get implants for my children to fix them. I made an informed decision. Cochlear implants do not fix anything. Cochlear implants allow my children access to sounds that they learned to use. My children were born deaf and will die being deaf. There is nothing I can do to change this nor have I ever attempt to fix their deafness.

First of all, I said "perhaps". Secondly, my statement is not a contradiction in the least. Thirdly, I did not say anything about "informed decision".
Fourthly, inherent in the decision to implant is the desire to fix some aspect of deafness, i.e. lack of sound perception.

 

[jackiesolorzano]

In my experience, it was the opposite... most people told me that I was making it up about being profoundly deaf cuz I speak so well or forget that I am deaf and start talking to me without making sure I am facing them.

You see that is the difference between your speech skills and my children's. My children can understand everything spoken to them if their backs are turned. My children can have complete conversations on the cell phones or line lines.

 

[jackiesolorzano]

Something just hit me...u say "good implant centers" so do u mean there are centers that are not good and possibly be too quick to implant babies without ensuring that they do not have a severe to profound hearing loss?

What about those implant centers in other countries? I read an article that in Japan, the criteria is not as strict as it is here.

I do not know about all implant centers, what I meant by a good implant center is when where they have a complete team to make parents informed of all options and help them have realistic goals. I also know of an implant center that does not do a good job of informing parents of everything. And this center implants children way too late.

 

[jackiesolorzano]

I just have to say, I NEVER once received any pressure to implant my child from the medicial community- in fact it was the opposite. I received A LOT of pressure from the Deaf community for my decision- to the point where I have been called names, tell my child lies about me (from Deaf people) .... I could go on and on... If you were a Deaf person looking in , you would think that my child in "brainwashed" into loving his CI- after all, he has deafness all around him and yet praises his CI every chance he can get. He writes poems about how he can "hear" and then how his world becomes "silent" when he wants it to... he has written an essay about the benefits of his CI.. yet, I have done nothing to "force" (for lack of a better word) down this road... He has Deaf aunts, uncles, grandparents, cousins, sees it all around him, and yet- still chooses the path of wearing his CI...He sees his Deaf role models (like his grandfather that he ADORES) and yet says to me that he is lucky to live in a time that he has the CI

RIGHT ON

 

[jillio]

Answer my question do you know of any children that were implant that it was later found out that they were hearing. And while the implant use to always wipe out all hearing, that is not the case now. ABout 1/2 of kids now that are implanted their hearing is not wipe out. Just learned that information this past week. And so they implant one ear how about the other ear does it wipe the hearing in the ear that is not implanted. And my son's hearing was wipe out because he was implanted in 1995 but my daughter who was implanted with newer technology in 2001, her hearing was not wiped out.

How would one go about determining if a child was hearing prior to surgery, jackie? And, yes, when short arrays are used, some of the residual hearing in the lower frequencies can be maintained. Can be, not guaranteed to be. I've known that for quite some time, since they developed the short array for use on adults. There are people with unilateral deafness. Just because they are severe to profound in one ear does not necessarily mean that they are severe to profound in both ears.

 

[jackiesolorzano]

Then NAD should start distributing brochures/pamphlets at hospitals so that those parents can get all the materials needed.

I think that is a great idea. I think parents should have information on all options so they can make an informed decsisions.

 

[jillio]

You see that is the difference between your speech skills and my children's. My children can understand everything spoken to them if their backs are turned. My children can have complete conversations on the cell phones or line lines.

If your children can understand everything said if their backs are turned, why was it again that they needed CART to understand the students' sitting behind them?

My son can have a complete conversation on a cell phone, too. He uses a feature known as "text messaging". And, he can have a complete conversation using a land line, as well. He simply connects a TTY to the land line.

 

[jillio]

I do not know about all implant centers, what I meant by a good implant center is when where they have a complete team to make parents informed of all options and help them have realistic goals. I also know of an implant center that does not do a good job of informing parents of everything. And this center implants children way too late.

Perhaps it is not that they are implanting them too late, but are simply refraining from implanting them too early.

 

[jackiesolorzano]

I'm glad that you understand that. But let's refine it even further, and clarify that it is not that you believe deaf children can be oral. I also believe that the majority of deaf children have the ability to develop oral skills of varying degree. My objections are to oral only in the educational environment, or to delaying visual communication for the sake of oral only communication.

Will that is your opinion and you have a right to it just as I have a right to my opinion. Maybe you should change your career path so that you can influence parents or as in my case that I present parents with all the information and options and let them make informed decisions for their child with all the information.

 

[jillio]

Will that is your opinion and you have a right to it just as I have a right to my opinion. Maybe you should change your career path so that you can influence parents or as in my case that I present parents with all the information and options and let them make informed decisions for their child with all the information.

Changing my career path is not necessary in order to influence parents. It is a facet of my career path already.

When you present parents with all of the information, do you also present the research findings that indicate that the students with CI that achieve the highest overall academically are those that are exposed to both sign and speech in the academic and home environments?

 

[shel90]

orginally posted by valle


orginbally posted by jillio


orginally posted by loml



orginally posted by jillio

There is a difference between "opinion" and "opinion paper"

 

[jackiesolorzano]

First of all, I said "perhaps". Secondly, my statement is not a contradiction in the least. Thirdly, I did not say anything about "informed decision".
Fourthly, inherent in the decision to implant is the desire to fix some aspect of deafness, i.e. lack of sound perception.

Do you know get what the implant does. It does not fix anything it gives access to sound. Get it.

 

[shel90]

Lee Larsen temporarily lost her rights to her two deaf boys due to neglience which had nothing to do with CI. The foster parents can ask for CI except if the parents lost their custody completely.

More on this: News: October 2002 - e-Michigan Deaf and Hard of Hearing

Right, she lost custody cuz she left her kids with another deaf lady for a week. Another claim that doesnt make sense.


I was referring to this petition when I pulled this excerpt:


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?”

 

[shel90]

You didn't answer my questions do you know of any children implanted at an early age that they later found out that the child was hearing? I know that I have not heard of any.

It was recent when the critera was lowered to young babies so that is where my concern lies. Before, it was in older children so of course anyone can tell when a child has a hearing loss when they are older. In babies?

 

[shel90]

You see that is the difference between your speech skills and my children's. My children can understand everything spoken to them if their backs are turned. My children can have complete conversations on the cell phones or line lines.

differences in speech skills? I said that many people have been fooled cuz I have good speech skills so they think I am hearing sometimes.

How would you know that my speech skills are different from your children?

If u wanted to compare differences, that would be receptive skills, not speech skills.

I am happy for your children. If it makes them happy great. However, I work with kids who have CIs who cant even engage in spoken conversations.

 

[jackiesolorzano]

How would one go about determining if a child was hearing prior to surgery, jackie? And, yes, when short arrays are used, some of the residual hearing in the lower frequencies can be maintained. Can be, not guaranteed to be. I've known that for quite some time, since they developed the short array for use on adults. There are people with unilateral deafness. Just because they are severe to profound in one ear does not necessarily mean that they are severe to profound in both ears.

Listen, my daughter was implanted in 2001. She does not have a short array. She has a N24. My daughter was 11 years old when implanted she was a child. She had many hearings tests afterwards and all prove that she did not lose her hearing. Hey have you talked to an ENT that does implants lately to ask them for accurate updated information. I have in the past 2 weeks talked to 2 different doctors, 3 different children audiologist.
I believe that what you are talking about is the BAHA that is now approved for children 5 and above.

 

[shel90]

I do not know about all implant centers, what I meant by a good implant center is when where they have a complete team to make parents informed of all options and help them have realistic goals. I also know of an implant center that does not do a good job of informing parents of everything. And this center implants children way too late.

What I am talking about and what you are talking about are completely different things.

 

[jillio]

There is a difference between "opinion" and "opinion paper"

Thank you.

 

[jackiesolorzano]

First of all, I said "perhaps". Secondly, my statement is not a contradiction in the least. Thirdly, I did not say anything about "informed decision".
Fourthly, inherent in the decision to implant is the desire to fix some aspect of deafness, i.e. lack of sound perception.

OK so you say you said perhaps and I am telling you and everyone else. I was not then nor now trying to fix my children. My children are deaf, they will always be deaf and that is who they are. I was trying to give them access to sound.