CI facts page... FDA

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I sound retarded?

" Ihave read,, no first hand knowledge,, that many children who are implantees can't master oral skills. For whatever reason, no matter how many grueling hours they spend in speech classes, at the risk of their other academics failing, such as literacy, they still can't learn to talk in a way that doesn't come out so measured that they sound ,forgive the term, retarded.

As a result of this, they feel totally depressed and lose self esteem because they feel hopeless to ever fit in with their family or society. They hate to disappoint their parents, and they also hate being left out of every conversaton that they can't understand let alone respond to verbally."Posted by Dreamchaser

This is a little off topic as I am not a person with CI but hard of hearing. I had plenty of speech therapy, but it is hard for some people not my family to understand my speech, but my self esteem is generally good until I read reasoning like this.
 
" Ihave read,, no first hand knowledge,, that many children who are implantees can't master oral skills. For whatever reason, no matter how many grueling hours they spend in speech classes, at the risk of their other academics failing, such as literacy, they still can't learn to talk in a way that doesn't come out so measured that they sound ,forgive the term, retarded.

As a result of this, they feel totally depressed and lose self esteem because they feel hopeless to ever fit in with their family or society. They hate to disappoint their parents, and they also hate being left out of every conversaton that they can't understand let alone respond to verbally."Posted by Dreamchaser

This is a little off topic as I am not a person with CI but hard of hearing. I had plenty of speech therapy, but it is hard for some people not my family to understand my speech, but my self esteem is generally good until I read reasoning like this.


Not all feel that way but numerous do feel that way. I was one of them who ended up feeling depressed and frustrated cuz I always fell short in being the hearing person I thought I was supposed to be growing up.
 
Hey Bill, how ya doin this fine day... LOL,, we just had a hail storm and snow. That never happens this time of year here.

I think I addressed the misconceptions that I was referring to, but you also asked for documentation concerning the fact that I believe that the implant industry has not compiled a list of people who have expereinced a problem due to implant surgery.


I asked what or where are the lots of misconceptions you were speaking of, I never ask for any documentation however you gave me an answer which I do agree that hearing people think it is some type of a mircale but it those hearing people whom never researched or may heard something about CI briefly on TV or read about it in newpaper. You have to be aware that majors of CI people are hearing people whom used to be hearing all their life and they lose their hearing age 30's 40's 50's etc then get CI which restore some of their hearing back so to them it probably a mircale to get their hearing back after being a hearing person all their life.

but

to me being born deaf and worn hearing aid all my life and exposed to deaf commuites, CI is not a mircale but it sure a heck lot more powerful than any hearing assistance devices or hearing aids that I worn in my whole life.

and

The parents of deaf childern would research or discuss with someone about CI will mostly likely be made aware that CI are not mircale device or will cure deafness. I don't think any audie or doctor want to get their butt sued big time for stating otherwise.








It is also hard to find statistics on the amount of people who have chosen to have one removed due to the relentless noises in their head or infection or equipment failure. This information is pretty much protected by the medical privacy laws.

I have not found a CI site that discusses how many people have failed to benefit from an implant, or the NOT successful stories. I have also not heard them address the oral-only controversy. They leave that up to the oralist to do. I do believe that I had an article saved that said that the oralists have actually partnered with the audiology industry to lobby for earlier implantation. As a general rule the age limit is 12 months, but we do know that imlants have been authorized at even younger ages. Logic would dictate that the FDA did not lobby themselves on this issue, and it was not a God-given inspiration that made them authorize earlier implantation. So, I assume that what I heard was true; the CI industry and the oralists lobby the FDA.

I have heard and read many many many thousands of CI failure story. They all been hearsay to me "My friend told me her/his CI failed them or my friend told me they wish to have it removed". I have met several deaf people that doesn't wear CI anymore just because it was a choice they made it. One of the main reason for not wearing CI is because it is considered a taboo among the deaf commuiies. I wear mine to every deaf events but I only been implanted 5 year ago and they still treat me the same probably because I am an adult and all my deaf friend are adults too. I only have maybe less than 5 hearing friends and like oh 80+ deaf friends .. all close friends. I sign PSE/ASL.

Do I tell deaf people to go get a CI or is CI a wonderful mircale device? Nope but if they ask for my experience with CI for the past 5 year and I am more than happy to share it with them.



I feel hurt that you would think that I would rob a child of their right to hear. I understand that you are adamant about implanting your own child and that you think you made a good decision for him/her. I pray to God that you experience nothing but the best from your decision and that your child grows to have a full life and reach his potential.

I understand that the oralists and some other researchers believe that early aquisition of sound will encourage language development better; thus, we must implant babies as soon as the screening shows a hearing loss of any sort. Is there an age limit that you feel is appropriate? Should they automatically implant children who are HOH, or only deaf in one ear? How much hearing loss must a child display before he is automatically wheeled off to surgery so he won't be a drag on society? I am truly curious to see where you think the line should be drawn.

Hrmmmm I never post or said such thing about you robbing your child or anything like that. You must be thinking of someone else.



Do you have any statistics from a LONG-term data collection that shows the absolute effects of sending electrical impulses into someones head? A whole lifetime of say, 60 to 100 years of electrical impulses invading the brain has not been documented to my knowledge, but if you have the data, please share.

I'll let you know when I am 80 and tell you how it feel with electrical impules invading the brain so you'll have to wait a long time before I could answer this.






I am curious. If an implant does not benefit a person or is causing a problem, does state insurance pay for a new surgery to have it removed? Is that saving the tax payers money? I am confused.

My implant recently broke and had problem that I had it replaced last month and all bills were covered and paid 100% by the cochelar implant company. Of course I was disappointed that I had to go back to surgey to have it replaced but it been replaced and I experienced no issues with the second surgery.




Have you heard of human error during and afer surgery in hospitals? Is it not possible that a tiny baby with the smallest of ear canals and nerve system might be accidentally injured during a surgery? Is that terribly hard to concieve of. I realize that the claim is that implants are SAFE. But ya know, they said the same thing about electric shock therapy to cure depression, and the same is true of breast implants and lypo suction. Ya know, they use to promolgate LABOTOMIES too, until someone decided that it was unethical to experiment on people by giving them an irreversible and life-changing operation,, just so they would not be a drain on society.

Can you guarantee me that if we were to seek an operation to remove my granddaughters nodule, with only a slight hope for success, can persoanally guarantee me that she will not contract an untreatable staph infection or flesh eating from the surgery? These germs are mutating faster than we can create medicines to combat them. I know this is true because I just lost my husband from a staph in fection that he contracted in the hospital during a minor back operation. It ate through his spinal cord, and he had a massive stroke that made him brain dead, and on our anniversary, they pulled the plug. Any major invasive surgery can cause death due to the above mentioned complications, a blood clot or any number of reasons.

No doctor or hostipal will guarantee anyone on any surgery or anything that they perform or the aids they provide to you. That the facts.

Some years ago a little girl was so freak out having a MRI done so they gave her a relaxation medicine to help her calm down and she died from it. That little girl didn't have any surgery done or wasn't in any pain or anything. She was just too scare being in a small tunnel so doctor wanted to calm her down so they could have MRI done and instead she died.

Visiting or seeing doctor or hostipal is a risk period. No matter what the reason.








I want people to hear. But if they can't, I love them just the way they are. They don't need to undergo a painful and unpredictable surgery to accomodate me. I hope this doesn't sound crass, but it is on topic: If your child would have died from a secondary complication, what would you feel...especially if he were not old enough to express his desire or lack of desire to have the surgery inspite of the potential risk to his health?

Did you even read the FDA website??

After you do, please return and lets have a civilized discussion about this. Like I said, at least I care enough to try to be sure that people have access to all of the information available before making such a huge commitment. I was not trying to offend you for your choice, nor am I trying to do that now. I just want to be sure that comprehensive alternatives to the surgery are presented, and the risks are rightly represented. If we are looking for a happy story, the implant industry has already provided lots of glowing accounts for us to access. Unfortunately, I have not yet been able to find their accounts of the not-so-gowing experiences.

You are apparently an intelligent and educated man. You made a decision based on what you believed to be true after you were presented the facts. I am not sure that all hearing parents have done there research as thoroughly as you and I want to encourage to do so. Again, I apologize if my typing does not reprsent my whole thought.

Yes I have read every single website FDA CI Deaf Site etc and I have talk to many other people with CIs and doctors and researched this very hard 5 year ago before I made the decision to have a CI myself. They even required me to speak with a shrink before they would approve me of CI to make sure I am well informed on this. And I am very aware of CI being a "taboo" in the deaf commuities as well too.



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I asked what or where are the lots of misconceptions you were speaking of, I never ask for any documentation however you gave me an answer which I do agree that hearing people think it is some type of a mircale but it those hearing people whom never researched or may heard something about CI briefly on TV or read about it in newpaper. You have to be aware that majors of CI people are hearing people whom used to be hearing all their life and they lose their hearing age 30's 40's 50's etc then get CI which restore some of their hearing back so to them it probably a mircale to get their hearing back after being a hearing person all their life.

but

to me being born deaf and worn hearing aid all my life and exposed to deaf commuites, CI is not a mircale but it sure a heck lot more powerful than any hearing assistance devices or hearing aids that I worn in my whole life.

and

The parents of deaf childern would research or discuss with someone about CI will mostly likely be made aware that CI are not mircale device or will cure deafness. I don't think any audie or doctor want to get their butt sued big time for stating otherwise.










I have heard and read many many many thousands of CI failure story. They all been hearsay to me "My friend told me her/his CI failed them or my friend told me they wish to have it removed". I have met several deaf people that doesn't wear CI anymore just because it was a choice they made it. One of the main reason for not wearing CI is because it is considered a taboo among the deaf commuiies. I wear mine to every deaf events but I only been implanted 5 year ago and they still treat me the same probably because I am an adult and all my deaf friend are adults too. I only have maybe less than 5 hearing friends and like oh 80+ deaf friends .. all close friends. I sign PSE/ASL.

Do I tell deaf people to go get a CI or is CI a wonderful mircale device? Nope but if they ask for my experience with CI for the past 5 year and I am more than happy to share it with them.





Hrmmmm I never post or said such thing about you robbing your child or anything like that. You must be thinking of someone else.





I'll let you know when I am 80 and tell you how it feel with electrical impules invading the brain so you'll have to wait a long time before I could answer this.








My implant recently broke and had problem that I had it replaced last month and all bills were covered and paid 100% by the cochelar implant company. Of course I was disappointed that I had to go back to surgey to have it replaced but it been replaced and I experienced no issues with the second surgery.






No doctor or hostipal will guarantee anyone on any surgery or anything that they perform or the aids they provide to you. That the facts.

Some years ago a little girl was so freak out having a MRI done so they gave her a relaxation medicine to help her calm down and she died from it. That little girl didn't have any surgery done or wasn't in any pain or anything. She was just too scare being in a small tunnel so doctor wanted to calm her down so they could have MRI done and instead she died.

Visiting or seeing doctor or hostipal is a risk period. No matter what the reason.










Yes I have read every single website FDA CI Deaf Site etc and I have talk to many other people with CIs and doctors and researched this very hard 5 year ago before I made the decision to have a CI myself. They even required me to speak with a shrink before they would approve me of CI to make sure I am well informed on this. And I am very aware of CI being a "taboo" in the deaf commuities as well too.



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Geez Bill, I grabbed the wrong post when I replied. I was replying to Rick! I feel terrible that you think I said that to you. I blew it big time.

Again, I am not against CIs, and I am happy to hear that you recieved great information and even had to consult a shrink first. That is absolutely wonderful news. I can quit worrying so much about it now.

I am thinking that the heated part of this discussion was envoked because I thought Rick was accusing me of wanting to keep a child from being able to hear because I worry over the age limit getting younger.

Again, If technology will help a person to hear, then I am thrilled for them! That is a no brainer. I think I was referring to how I concieved the industry as not providing total information to hearing parents with deaf babies. I don't know that they actually encourage a hearing parent to look into the alternatives of an implant, which would be a Deaf school or variation of Deaf ED. You are an adult and made your own choice. Would you make the same choice for a new infant if it were your kid? Maybe. The one thing I have not heard from anyone hear yet, was "the Ci doctor refused to give my kid an implant until I researched other options and sought council from the Deaf community.' Do you think your doc would've prescribed that if he were considering implanting your child instead of you?

I hear that people who lose their hearing post-ligually are having good success. AND that is Wonderful! I aint arguing that. Actually, I wasn't arguing anything. I simply posted a site that had a list of the risks and benefits. :) sorry if I offended you, was not my intention. I think you would be a really cool guy to have for a friend. :)
 
I totally agree with Shel! I have read,, no first hand knowledge,, that many children who are implantees can't master oral skills. For whatever reason, no matter how many grueling hours they spend in speech classes, at the risk of their other academics failing, such as literacy, they still can't learn to talk in a way that doesn't come out so measured that they sound ,forgive the term, retarded.

As a result of this, they feel totally depressed and lose self esteem because they feel hopeless to ever fit in with their family or society. They hate to disappoint their parents, and they also hate being left out of every conversaton that they can't understand let alone respond to verbally.

There have been Deaf schools who report that they have enrolled imlanted children who are transfering from a mainstream school, most of these children are way behind in all of their academic studies especially literacy.

So, for the ones who only get a small amount of sound, and their is no burning -bush -miracle such as your daughter experienced, where would you suggest that they gain access to an education and social life? How many years should they be forced to repeat grades in public school before you are willing to allow them access to their own language and their own peers?

Rick, forgive me asking this, but I gots to know: Are you so ashamed of deafness in general, and your own daughter's deafness that you would disallow her the benefits of a loving Deaf environment where she recieved a means to communicate and socialize, and to learn? What if her implant had not worked? Who would you have turned to then? What if she was not cognitavely able to learn English skills? What then? Would it still be a waste of the taxpayers money to offer her an education in a Deaf school?

Your daughter happens to be very lucky, and maybe even an exception to the rule. Because she has the capabilities, and her implant was successful, it by NO means indicates that other children share her capabilities, implanted or not. I personally think that you should be thankful for all that she has been given, nurture her and provide all that you can for her... But please don't forget.... If the implant fails, or some other injury or illness were to force it's removal,,, and at night when she sleeps, or in the morning when she showers, or when she is near airport screening equipment etc,,, Any time that her implant is turned off... She is still DEAF. And we would love her and welcome her implanted or not... Can you say the same?

:gpost::gpost::gpost:

And it is unfortunate, but true, that those deaf individuals whose speech is difficult to understand are quite oftern perceived, by the general hearing population, as MRDD.
 
And it is unfortunate, but true, that those deaf individuals whose speech is difficult to understand are quite oftern perceived, by the general hearing population, as MRDD.

Yup. Goes back to the old belief that speech = intelliegence. That belief is still prevalent, whether people want to admit it or not; it's a intrinstic belief, something that people automatically percieve as true without thinking about it.
 
" Ihave read,, no first hand knowledge,, that many children who are implantees can't master oral skills. For whatever reason, no matter how many grueling hours they spend in speech classes, at the risk of their other academics failing, such as literacy, they still can't learn to talk in a way that doesn't come out so measured that they sound ,forgive the term, retarded.

As a result of this, they feel totally depressed and lose self esteem because they feel hopeless to ever fit in with their family or society. They hate to disappoint their parents, and they also hate being left out of every conversaton that they can't understand let alone respond to verbally."Posted by Dreamchaser

This is a little off topic as I am not a person with CI but hard of hearing. I had plenty of speech therapy, but it is hard for some people not my family to understand my speech, but my self esteem is generally good until I read reasoning like this.


Again, I am not here trying to debate CIs, just to pass on a website I thought was good info. Someone else started the ......


YOu are right that this reasoning sounds like a stupid hearie comment. For that I appologize. The reason I stated that was because I was disscussing the children that are not good candidates to CIs, and those who can't master oral skills or speech reading. The topic was coverin the question that Shel90 had posed about Deaf schools being a waste of tax payer money. And she noted that one lady was advocating shutting down all of the Deaf school to save money. I have seen that sentiment right here in my town where the only Deaf school is located. My question is... for those who don't succeed in oral or mainstream schools, what would their alternative be?

The comment about the "measured speech sounding retarded" for some who just struggle and struggle to master it but can't, was a reflection of what my teacher had told me. She is a fourth generation, proufoundly Deaf-from-birth 34 year old. There was one hearing child born in each generation. She is currently teaching linguistics at UC Davis, and she teaches at Berkley and Sacramento as well. She worked very hard to aquire speech, but she refuses to use it in public. Why? She said that she had felt like she sounds retarded when she speaks, and she would rather be seen as Deaf than to be assumed to be (again forgive the term) retarded. I don't know how good her speech skills are, because I never heard her use them. My other teacher, born deaf, to hearing parents, with one deaf sibling,, (I think she has one deaf sibling, can't remember now), told me that some kids who feel totally uncomfortable with speech don't want to be percieved as unintelligent, and they refuse to speak around the other students. Of course this doesn't represent the experience of the whole Deaf community. Nothing represents the whole Deaf community, because there is great diversity and very strong opposing opinions on a variety of subjects. Again, The comment I made was never meant to sound terrible, it was a repeat of what I was told by some Deaf people that I dearly trust and love who are both highly educated. I should have clarified that when I mentioned it. Actually, I probably should have never mentioned or posted the FDA site for referrence. I wasn't trying to be contentious or hurful to anyone or their preference.

Another misconception that I believe the average hearie has is that ALL deaf people are expert speech readers and that it is only a matter of practice to be able to speech read and to speak. To my understanding, speech reading is no easy feat. I believe that many words look the same on the lips, and sometimes the conditions are very poor for thorough understanding of lip movement, ie,, mustache, chewing, speaker putting hands in front of their face, bad lighting, crowded room, too many speakers, etc. I have heard that sometimes it is only possible to understand about 30 to 40 percent of a conversation. (If I am wrong I would love for you to correct me and point me to better information)

Considerig that total oralism has not been successful for all kids, I was simply trying to ask Rick if he felt that we need alternate schooling for those who don't succeed in oralism, or if he felt that Deaf schools were also a waste of tax payers money? So sorry for the offence. So sorry to have brought up the subject... I will lovingly leave the conversation now so I won't risk woundig anybody else's feelings.
 
Again, I am not here trying to debate CIs, just to pass on a website I thought was good info. Someone else started the ......


YOu are right that this reasoning sounds like a stupid hearie comment. For that I appologize. The reason I stated that was because I was disscussing the children that are not good candidates to CIs, and those who can't master oral skills or speech reading. The topic was coverin the question that Shel90 had posed about Deaf schools being a waste of tax payer money. And she noted that one lady was advocating shutting down all of the Deaf school to save money. I have seen that sentiment right here in my town where the only Deaf school is located. My question is... for those who don't succeed in oral or mainstream schools, what would their alternative be?

The comment about the "measured speech sounding retarded" for some who just struggle and struggle to master it but can't, was a reflection of what my teacher had told me. She is a fourth generation, proufoundly Deaf-from-birth 34 year old. There was one hearing child born in each generation. She is currently teaching linguistics at UC Davis, and she teaches at Berkley and Sacramento as well. She worked very hard to aquire speech, but she refuses to use it in public. Why? She said that she had felt like she sounds retarded when she speaks, and she would rather be seen as Deaf than to be assumed to be (again forgive the term) retarded. I don't know how good her speech skills are, because I never heard her use them. My other teacher, born deaf, to hearing parents, with one deaf sibling,, (I think she has one deaf sibling, can't remember now), told me that some kids who feel totally uncomfortable with speech don't want to be percieved as unintelligent, and they refuse to speak around the other students. Of course this doesn't represent the experience of the whole Deaf community. Nothing represents the whole Deaf community, because there is great diversity and very strong opposing opinions on a variety of subjects. Again, The comment I made was never meant to sound terrible, it was a repeat of what I was told by some Deaf people that I dearly trust and love who are both highly educated. I should have clarified that when I mentioned it. Actually, I probably should have never mentioned or posted the FDA site for referrence. I wasn't trying to be contentious or hurful to anyone or their preference.

Another misconception that I believe the average hearie has is that ALL deaf people are expert speech readers and that it is only a matter of practice to be able to speech read and to speak. To my understanding, speech reading is no easy feat. I believe that many words look the same on the lips, and sometimes the conditions are very poor for thorough understanding of lip movement, ie,, mustache, chewing, speaker putting hands in front of their face, bad lighting, crowded room, too many speakers, etc. I have heard that sometimes it is only possible to understand about 30 to 40 percent of a conversation. (If I am wrong I would love for you to correct me and point me to better information)

Considerig that total oralism has not been successful for all kids, I was simply trying to ask Rick if he felt that we need alternate schooling for those who don't succeed in oralism, or if he felt that Deaf schools were also a waste of tax payers money? So sorry for the offence. So sorry to have brought up the subject... I will lovingly leave the conversation now so I won't risk woundig anybody else's feelings.

U have brought up very valid points. If some people get upset by them, then oh well cuz this subject is very sensitive but needs to be addressed. We cant ingore all these issues for fear of hurting some people's feelings.

As for the speech thing, my deaf brother refuses to use his voice cuz people have asked my mom if he was mentally retarded. With me, my speech is practically perfect except for a little accent-like sound but even with my good speech, it is a double edge sword for me cuz it gives hearing people the impression that I am not as profoundly deaf as I state. They think because I can speak so well that I can hear just as well too but the truth is my hearing loss is so profound.

Yes, about people wanting to shut down deaf schools due to costs, I think that is pretty selfish of them to wish for things like that.
 
U have brought up very valid points. If some people get upset by them, then oh well cuz this subject is very sensitive but needs to be addressed. We cant ingore all these issues for fear of hurting some people's feelings.

As for the speech thing, my deaf brother refuses to use his voice cuz people have asked my mom if he was mentally retarded. With me, my speech is practically perfect except for a little accent-like sound but even with my good speech, it is a double edge sword for me cuz it gives hearing people the impression that I am not as profoundly deaf as I state. They think because I can speak so well that I can hear just as well too but the truth is my hearing loss is so profound.

Yes, about people wanting to shut down deaf schools due to costs, I think that is pretty selfish of them to wish for things like that.

Agreed. Dreamchasers points are very valid, and she has not been offensive at all in the way she has presented them.
 
Rick, forgive me asking this, but I gots to know: Are you so ashamed of deafness in general, and your own daughter's deafness that you would disallow her the benefits of a loving Deaf environment where she recieved a means to communicate and socialize, and to learn? What if her implant had not worked? Who would you have turned to then? What if she was not cognitavely able to learn English skills? What then? Would it still be a waste of the taxpayers money to offer her an education in a Deaf school?

Your daughter happens to be very lucky, and maybe even an exception to the rule. Because she has the capabilities, and her implant was successful, it by NO means indicates that other children share her capabilities, implanted or not. I personally think that you should be thankful for all that she has been given, nurture her and provide all that you can for her... But please don't forget.... If the implant fails, or some other injury or illness were to force it's removal,,, and at night when she sleeps, or in the morning when she showers, or when she is near airport screening equipment etc,,, Any time that her implant is turned off... She is still DEAF. And we would love her and welcome her implanted or not... Can you say the same?

Yes I can.

First, my daughter has always and continues to be involved with the deaf community.

Sorry, but I have seen firsthand the "love" people like you spew when you call cochlear implanted children frankensteins, robots etc. When you call their parents nazis and child abusers. So spare me your trite little catch phrase because my daughter has been raised in a warm and loving family surrounded by an even larger extended family that loves her unconditionally.

She has her family and her friends both hearing and deaf. She socializes and communicates with people who accept her for who she is. They and we see her as she sees herself, as a person who is so many things, only one of which is being deaf.

And thanks for reminding me that she is deaf, wow, I would never have known it if you had not reminded me. You mean when she takes her ci off, she cannnot hear! Wow, I must tell my wife, after almost 20 years we had no idea she was still deaf. Thank God, you pointed that out to me or we would have gone through the rest of our lives belieiving that she was no longer deaf!

Heavy sarcasam intended.
Rick
 
where would those deaf kids who fell so far behind academically in the public schools go? Guess it doesnt matter cuz that woman's and your daughters are fine being mainstreamed. Doesnt matter if those other children return to the very same schools that failed to meet their needs and they end up worse off.
Amen! Public schools tend to only be really good for the Mythical Average Learner. Even kids who are gifted will very often struggle in school.

Or growing older knowing you made the wrong choice for your child
rick, FYI MANY parents of oral kids who later discovered Sign, now think that they should have been more openminded about education, and exposing their dhh kids to Sign.
It's great that your daughter (and many AG Bellers) have done well orally and mainstreamed, BUT you're simply looking at a SELECT few! It's like claiming public schools are good b/c kids from wealthy high acheiver suburbs end up going to Brand Name Ivy League College, so they can become hedge fund managers. Not all kids from public schools do as well as that. It's the same thing with oral skills/CI implantation and mainstreaming.
 
Yes I can.

First, my daughter has always and continues to be involved with the deaf community.

Sorry, but I have seen firsthand the "love" people like you spew when you call cochlear implanted children frankensteins, robots etc. When you call their parents nazis and child abusers. So spare me your trite little catch phrase because my daughter has been raised in a warm and loving family surrounded by an even larger extended family that loves her unconditionally.

She has her family and her friends both hearing and deaf. She socializes and communicates with people who accept her for who she is. They and we see her as she sees herself, as a person who is so many things, only one of which is being deaf.

And thanks for reminding me that she is deaf, wow, I would never have known it if you had not reminded me. You mean when she takes her ci off, she cannnot hear! Wow, I must tell my wife, after almost 20 years we had no idea she was still deaf. Thank God, you pointed that out to me or we would have gone through the rest of our lives belieiving that she was no longer deaf!

Heavy sarcasam intended.
Rick

I totally appreciate your passionate sarcasm. I must say that from the earlier conversation and comments about Deaf schools being a waste of tax payer money, I got the impression that you were an oral only- keep the kid from being exposed to the Deaf commuity freak! Thus, you got my attitude back at ya.

I have never, and will never consider an implanted child as anything less than just what they are.. special gifts of God, created to be who they are and all that they can be. I am sure your daughter is very gifted, and thankfully she has had a very happy experience from her implant. If ya heard anything I said at all, I said I am not against CIs. I am very wary of any industry that makes billions of dollars a year being totally in the corner of those they are there to help. Forgive me, but I have seen so much corporate corruption I could spew that for real.

Obviously, I got a wrong picture of you and your family from this short thread, because I did not know that you encouraged ties to the Deaf community for your daughter. Apologies extended for my assumption, because your tone was so nasty toward anyone that stuck up for Deaf people who don't want to be pushed into implants.

You did a very good job of "putting me in my place" for not understanding your point of view. However, I will not take credit for anything other than that. I did not call your daughter a Frankenstein or robot. I am aware that there is some in the Deaf community who actually ostrisize people for getting implants because they fear it will weaken Deaf culture. To the contrary, I believe just the opposite. I think that Deaf people of all people should no better than to judge a person, especially a child, because they have an implant. That would be ignorance at its worst. Now, I did not mean to imply any of those things, and I would appreciate it if we could discuss what I was trying to address. You are the one that came in and made the conversation contentious by disrespection Jillo and Shel90.

I said over and over that I an not against an informed decision to have an implant. I am against making ignorant or uninformed decisions. PERIOD> I also am concerned about the medical risks that come up when you are dealing with the fragility of an infant.

I would like your honest evaluation of this subject if you would care to share your unbiased and thoughtful opinion on the matter. Yes, I was quite sarcastic about the way that I posed the questions, but the questions were real. Still, it was rather childish of me to get caught up in the little cat fight you were conducting with Jillo.

What age limit do you feel is appropriate to implant a child? Where do ya draw the line. Do you think it should be done right after the initial screening as some advocate? How much hearing loss do you think should exist before considering an implant. How do you feel about the possible medical risks involved with implants. Do you think it is unreasonable for a parent to consider these risks as ones to big to gamble with? Should these parents feel pressured into a hasty decision that goes against their gut instinct?
Do you belive that Deaf schools should be shut down as the lady that Shel90 noted? I all for saving money for the tax payer if it doesn't lead to the suffering of a human being. Apparently, you have previously postd points and authorities about the financial side of this debate. I for one would be very interested in understanding your point of view by seeing the ethos you present. Do you really feel that *many* mainsteamed children aren't emotionally isolated? What do you propose the parents of profoundly Deaf children who don't qualify for implants should do if their child isn't faring well in a public school setting? We are lookin for solutions here, no Gothchas.

I would like it if you would put some calm and civilized input into this conversation. These issues need to be rationally discussed without the sarcasm and character assasinations of those you disagree with, There are many parents yet to face their own personal decisions. The idea is to brainstorm, debate and parse the different questions on the matter so good information can be assimilate. Public debate can be a great tool, or it can be a wedge which defeats the original purpose of the deabate. It is your choice.

I honestly before God can tell you that I wish your daughter great success and happiness in life. I would feel terrible if she were wounded in any way. And ya know, I really do believe that you are a loving and involved father who loves his daughter and is proud of her accomplishments. No one begrudges you that. I have not heard anyone hear attack your daughter! She is the whole point.... all Deaf children are the point... How do they feel, and how are they going t reach their academic and social potential? there is no room in this discussion for pettiness or ego trips. maybe public schools are not a one-size-fits-all solution. And maybe the CI industry is experimenting on babies at younger and younger ages because they do not know what the long term effect of currents to the brain will be. Just because a parent choses not to engage in the gamble, and choses what they know is sufficient for the need, then maybe you should respect their rights too.

I have apologized for being somewhat of a whitch to you. I felt that you were unfairly attacking me and accusing me of wanting to deny your child the right to hear,,, as if that would somehow benefit me. So, yes, I got just as childish as you,. My apology is extended. If you chose not to take it that is your perogative. But, I will not let you get away with accusing me of attacking your daughter or calling her any derogatory names or begrudging her hearing or success. If that is what you got out of the conversation, then I don't even know what else to say. May God be with you and yours. J Still chasing the dream of a better tomorrow for EVERYBODY!
 
I have read,, no first hand knowledge,, that many children who are implantees can't master oral skills. For whatever reason, no matter how many grueling hours they spend in speech classes, at the risk of their other academics failing, such as literacy, they still can't learn to talk in a way that doesn't come out so measured that they sound ,forgive the term, retarded.
*raises hand*
Actually, those cases are a combonation of kids having apraxia (a motor planning disorder which makes it difficult for those affected to orally speak) Apraxia is very common in the dhh community. For example a kid could get a lot of understanding from their listening device, but not be able to pronounce things orally. And even many of the oral sucesses unfortunatly have an "MR" quality to their voices. You have NO idea how many people have (wrongly) assumed I'm MR b/c of the way I speak.
 
*raises hand*
Actually, those cases are a combonation of kids having apraxia (a motor planning disorder which makes it difficult for those affected to orally speak) Apraxia is very common in the dhh community. For example a kid could get a lot of understanding from their listening device, but not be able to pronounce things orally. And even many of the oral sucesses unfortunatly have an "MR" quality to their voices. You have NO idea how many people have (wrongly) assumed I'm MR b/c of the way I speak.

Howdy, YOu are right. It is really cool to me how much ASL has been found to benefit people with apraxia, asphasia, Down Syndrome, autisim, strokes and even cerebal palsy. It is really encouraging. They may never totally masater ASL, but at least they have something they can use that is not too cumbersome for them. It makes me really sad when people underestimte ASL, or PSE. I understand that SEE is really useful tool for teaching literacy skills, but people that have apraxia and such or suffer from stroke and the like can't sign that much for just one sentence... Thanks for the post. :)
 
*raises hand*
Actually, those cases are a combonation of kids having apraxia (a motor planning disorder which makes it difficult for those affected to orally speak) Apraxia is very common in the dhh community. For example a kid could get a lot of understanding from their listening device, but not be able to pronounce things orally. And even many of the oral sucesses unfortunatly have an "MR" quality to their voices. You have NO idea how many people have (wrongly) assumed I'm MR b/c of the way I speak.

I bet you get really tired of people misunderstanding you. I wonder sometimes why hearing people think that they are immune to deafness, and that any day they could get injured or ill, and it could result in deafness or apraxia, which is often caused by a brain injury like a bump on the head. I wish people would get educated about some of those things. I am sorry if you have had your feelings repeatedly wounded by hearing people who don't understand. It saddens me. Maybe one day it will get better. I hope. Have a wonderful night,,, Jeanie... :)
 
" Ihave read,, no first hand knowledge,, that many children who are implantees can't master oral skills. .....
...
Nonsense. Have a look at youtube... you'll find plenty of examples of excellent speech of children that grew up with CI..
Otherwise, ask Rick 48 about his daughter. And in a couple of years - ask me about my daughter... Otherwise... search internet video's and you'll find them....
 
I have decided to share a short story with you that I wrote.
I have not posted this story for many reasons, but mostly because I fear it may not be good enough, or it may sound condescending. It is not meant to be at all a form of kissing ass in the Deaf community. It was written in an attempt to reach hearies with a different insight into the Deaf community. It may even sound controversial, but I am gonna post it now in the hopes that you will get it that my intentions are not to hurt anyone, but to encourage people to be informed.

.

I'm not sur if there are any deaf/blind adult here. The Cochlear website has a forum that you can join , there are at least two deaf/blind adults who have implants on that forum if you would choose to talk with someone who is deaf/blind and chose to get implants. I would suggest talking with deaf/blind adults to find out why they feel the access to sound was so important. It's an interesting delima. For your granddaugher an inplant may actually be a very good choice for her. not having one sense is bad enough, not having to would be twice the trial. And my faith allows me to believe that if God did not mean us to hear he would not have given us the means to develope the technology to do so. As for what age. That is the families choice within insurance and goverment guidelines. Yes the decision should be an informed one. No a CI is not a miricle, but if a profoundly deaf child cannot hear much except noise with a HA a CI is a good option and making parents wait for a certain 'magic' age is bad. It depends on what type of risks you are willing to take to give a child exposure to sounds.

CI sounds are much better then HA....my personal experience. My hearing loss was only in the severe range. I still do not hear 100% and who knows if I ever will, but I do concider my inplant to be a success. Except when the elctronic portion of an inplant fails, which is rare, no inplant does not do what it is designed to do. THose who do turn them off do so for various reasons. My guess would be the biggest reason is the inablity of the adult or adolesent brain to adapt to the insult of noise, which is where I as with HA's. I needed them but couldnt turn them up enough because my brain could not sort out the noise. It wasn't a failure on the HA's part but a failure of my brain. Now my brain does really well with the insult of noise from a CI, perhaps because it does bypass the overworked damaged hearing hairs in my cochlea.

It wil be interesting to see how these young children do in their lives. Im sure some will require more time in sped rooms then others, it would be nice to someday have some studies comparing the number of kids with CI's requiring extensive sped services compared to the general population. And to see exactly what problems they are having. I really believe that for families who don't want to send thier children to residential schools because they live to far away that a CI is and can be a wonderful tool.

As for music in a post farther down, it sounds much fuller then anything I heard through hearing aides and sounds quite normal.

The risks from surgery are there, we are all aware of them. It does pay to research the hospital you will use if you can and if you have more then one choice through your insurance go with the one with the best infection control record. My bil did this when he had surgery two yrs ago, he chose to go to a hospitl about 100 miles from here. I'm sorry for the loss of your husband, by things including infections do happen. I know ofa 26 yo man with a 1 month old son who went in to have the leads changed on his pacemaker who died on the table. I know of a young woman who died of a heart infection she was only 28 at the time and basically healthy. I know of babies who made it through heart surgery with flyin colors and others that didn't make it for whatever reason. I see life as something in which any decision we make will have risks, we just have to decide if we are willing to take that risk.

I have run the risk of probably no being able to use new cell regeneration therphhy if it becomes available, but would it have been worth the struggle to exsist with poor hearing for another 20 yrs just in 'case' it became available. Unless there is a hugh breakthrough it could take that long or longer. I made my choice and parents make the choice for thier child everyday.

If such regeneration does become available it will be interesting to see if profoundly deaf adults can actually adapt to it better then a CI. But if someone cannot adapt to cell regeneration I wonder how/if they could just turn it off. At least if they can't adjust to a CI they can just quit using it.

I wish your granddaughter a long and happy life. :)
 
Mod's note:

This thread is locked for cooling down period and clean up as well too.
 
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