Why adults choose CI's for their children

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clerchall said:
At age 50, my parents wanted me to be "normal" - hence used the latest technology back in th early 60's. Out society is very characterized as being"normal", who wants a disabled child ? My mother still talks as if there is a mircle cure for my hearing loss, hence the parent's today are still looking for the "cure" If you speak differently in your society, then people will notice - "Are you from England ?", "You have an accent", etc. The CI or HA is only a tool to enhance the hearing, not restore hearing. I think that too many parents listen to what the doctors opinion is, "This will make you child better". Ther are many people who are deaf and are doing well, and other who are not. I know people who were led to beleive the CI would help them, and they were disappointed. When you are a child under age three, you don't experience sounds, so an CI may or not help the person - is it because adults know what sounds are, and when they lose the hearing, become upset ?
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While I agree that the attitude of normality for normal's sake is wrong, I think that there are parents out there who actually just want to increase their childrens' opportunities in life. My mother wanted me to be able to learn speech, not because she wanted us to be "normal" (she was very unnormal - she had an interracial marriage back in the 1960s), but because she saw it as a helpful skill for access to society at large.
 
R2D2 said:
While I agree that the attitude of normality for normal's sake is wrong, I think that there are parents out there who actually just want to increase their childrens' opportunities in life. My mother wanted me to be able to learn speech, not because she wanted us to be "normal" (she was very unnormal - she had an interracial marriage back in the 1960s), but because she saw it as a helpful skill for access to society at large.
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Then your mom did it for the right reasons. I just see way too many people (not AD members :))doing it for the wrong reasons and it drives me insane sometimes. :pissed:


Like Lillysdad got frustrated with deaf people bashing him and leaving AD, there are times I just want to leave teaching cuz I am so frustrated with this attitude:" CIs make my children hearing so why arent they learning speech or listening skills like they are supposed to?" That is putting unrealistic demands on children who are already self-consicous about themselves.
 
shel90 said:
Then your mom did it for the right reasons. I just see way too many people (not AD members :))doing it for the wrong reasons and it drives me insane sometimes. :pissed:


Like Lillysdad got frustrated with deaf people bashing him and leaving AD, there are times I just want to leave teaching cuz I am so frustrated with this attitude:" CIs make my children hearing so why arent they learning speech or listening skills like they are supposed to?" That is putting unrealistic demands on children who are already self-consicous about themselves.
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just wondering, does those who claims that such phrases are deeply involved in everyday life with their children like talking to their kids with ci most of time than when their kids come home from day at the school and that's it.

Most of us would say, if you want your child to have ci, you have to be involved in it to make it work. If you are not, then your child will have to work harder or end up being referred to other school like yours.

Here's a newsletter to show example that AB encourage parent to be fully involved in making their kids with ci to succeed in classrooms and maximize the use of CI.
http://www.bionicear.com/printables/Tools_newsletter_040506FINAL.pdf

(when I post this url does not means the kids at your school are using those brand but I posted it because I am AB users and I know the resources on that sites not Cochlear Corps' website though.. I am sure Cochlear Corps has similar resources... )
 
Boult said:
just wondering, does those who claims that such phrases are deeply involved in everyday life with their children like talking to their kids with ci most of time than when their kids come home from day at the school and that's it. I have no idea what goes on in their homes.


Most of us would say, if you want your child to have ci, you have to be involved in it to make it work. If you are not, then your child will have to work harder or end up being referred to other school like yours. There are some CI children that have started at our school from day one and never been in mainstreamed programs . Our schools do not serve only ASL-only deaf children. We serve both which is why we had the CI program implemented a few years ago.


Here's a newsletter to show example that AB encourage parent to be fully involved in making their kids with ci to succeed in classrooms and maximize the use of CI.
http://www.bionicear.com/printables/Tools_newsletter_040506FINAL.pdf

(when I post this url does not means the kids at your school are using those brand but I posted it because I am AB users and I know the resources on that sites not Cochlear Corps' website though.. I am sure Cochlear Corps has similar resources... ) I will have to find out. I am not an expert on technology. :dunno:[/QUOTE]

Do many people here on AD see deaf schools as a place to be referred to if the student dont succeed with CIs?

I would like to clear some things up..we have deaf children with or without CIs who started at our school since family education and remained at our schools because their parents believed in us and felt that their children will thrive and u know what? They do..they are on grade level and doing fine..just as deaf children from deaf families. It is all about family involvment. The schools (whether mainstreamed or deaf schools) are not solely responsible if children do well or not in academics...families play a huge role too. Seeing how small our school is..the difference is very obvious as opposed to public schools where there are several hundreds of kids.

That is not only at the school I work at...it also happens at other deaf schools too.
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shel90 said:
...

I would like to clear some things up..we have deaf children with or without CIs who started at our school since family education and remained at our schools because their parents believed in us and felt that their children will thrive and u know what? They do..they are on grade level and doing fine..just as deaf children from deaf families. It is all about family involvment. The schools (whether mainstreamed or deaf schools) are not solely responsible if children do well or not in academics...families play a huge role too. Seeing how small our school is..the difference is very obvious as opposed to public schools where there are several hundreds of kids.

That is not only at the school I work at...it also happens at other deaf schools too.
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Absolutely correct!
 
I just learned of some rather disturbing information yesterday regarding the reporting of success rates for the CI. Hardware failures are reported as failures but "soft" failures are reported as success if the device is functioning. So if someone gets a CI and gets no benefit, it's still reported as a success as long as the device is functioning as expected. That is just wrong and also paints an inaccurate picture on success rates. A statistic that would be a major driving factor in the decision. The CI manufactures all report only 1 to 2 percent failure rate but you have to keep in mind what I just mentioned about how success is measured. I hear more and more about soft failures and also many that have CI's have been re-implanted due to failures. I wish the soft failures and re-implant rate were available to help folks make informed decisions. What a crock!!!
 
I have nothing againt children who have CI because my daugher is now 8 yrs old, has her CI. She had it for a year and half. She loves it every sounds. My husband and I are deaf....we don't force her to have it. She always asked us that she want to have CI. We won't let her have it because we heard all the negative about it. We had a big meeting back in spring 2005. They told us if she don't get the CI and she will be far behind her school works and miss out all of information in the classroom. We thought about it and we didn't want to send her to other deaf school that don't have a best education. We wanted her to stay that deaf school which have the best education. So we talked to our daughter about it. She got all exciting about get her CI. Now she is doing sooo well at school and she is in 3rd grade now. All of her teacher and school staff think our daughter is a miracle child because she picked up all the sound so fast less than 2 month since she got her CI. I have no regret that she has CI. She know that she is deaf person and not hearing person. I teach her to learn ASL. At her school won't allow to use ASL. I went to that school long time ago and it's a good school. Her deaf school has more than 60 percent kids who have CI's. Now she begged me to get CI. I went to see audiogist and doctor they say I am candidate for CI. I am now scared to get one because what if I hate the sound which I am HA user all my life. I know HA and CI have different sounds.
 
Casey.. That is an awsome sucess story. Thanks for sharing it and I hope that your daughter continues to do well in school.
 
rockdrummer said:
I just learned of some rather disturbing information yesterday regarding the reporting of success rates for the CI. Hardware failures are reported as failures but "soft" failures are reported as success if the device is functioning. So if someone gets a CI and gets no benefit, it's still reported as a success as long as the device is functioning as expected. That is just wrong and also paints an inaccurate picture on success rates. A statistic that would be a major driving factor in the decision. The CI manufactures all report only 1 to 2 percent failure rate but you have to keep in mind what I just mentioned about how success is measured. I hear more and more about soft failures and also many that have CI's have been re-implanted due to failures. I wish the soft failures and re-implant rate were available to help folks make informed decisions. What a crock!!!
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I think its a difficult area because with soft failures it's not clear if it is a problem with the device or with the person's make up itself. So if the CI functions like its supposed to but the person doesn't get any benefit for different reasons then is it truly a "failure" of the device? It's more that the person doesn't benefit from the technology, rather than a failure of it.

I do agree with you though, that if a person doesn't benefit from a functioning CI then this should be disclosed, so that more research can be conducted and improvements made. However, the reasons for that failure which may be some unknown pre-implantation factors may not be relevent to all people using the information, and this needs to be recognised.

As with anything (hearing aids are a good example) not everyone benefits from every item of technology for a variety of reasons. It doesn't mean that the item itself is bad or useless but that we are all very different.
 
Casey73 said:
I have nothing againt children who have CI because my daugher is now 8 yrs old, has her CI. She had it for a year and half. She loves it every sounds. My husband and I are deaf....we don't force her to have it. She always asked us that she want to have CI. We won't let her have it because we heard all the negative about it. We had a big meeting back in spring 2005. They told us if she don't get the CI and she will be far behind her school works and miss out all of information in the classroom. We thought about it and we didn't want to send her to other deaf school that don't have a best education. We wanted her to stay that deaf school which have the best education. So we talked to our daughter about it. She got all exciting about get her CI. Now she is doing sooo well at school and she is in 3rd grade now. All of her teacher and school staff think our daughter is a miracle child because she picked up all the sound so fast less than 2 month since she got her CI. I have no regret that she has CI. She know that she is deaf person and not hearing person. I teach her to learn ASL. At her school won't allow to use ASL. I went to that school long time ago and it's a good school. Her deaf school has more than 60 percent kids who have CI's. Now she begged me to get CI. I went to see audiogist and doctor they say I am candidate for CI. I am now scared to get one because what if I hate the sound which I am HA user all my life. I know HA and CI have different sounds.
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That's an interesting story! It sounds like you have a really good relationship with your daughter and the fact that you care very much about her shines through.

As for you and CIs - that's a difficult one. If you are happy with your HAs then maybe hold on a bit longer. It's good to know that CIs will be there if you need them, as we deaf people are more susceptible to sudden hearing loss.
 
Casey,


Wonderful story. Thanks for sharing it with us. Best wishes to you and to your daughter.
Rick
 
rockdrummer said:
I just learned of some rather disturbing information yesterday regarding the reporting of success rates for the CI. Hardware failures are reported as failures but "soft" failures are reported as success if the device is functioning. So if someone gets a CI and gets no benefit, it's still reported as a success as long as the device is functioning as expected. That is just wrong and also paints an inaccurate picture on success rates. A statistic that would be a major driving factor in the decision. The CI manufactures all report only 1 to 2 percent failure rate but you have to keep in mind what I just mentioned about how success is measured. I hear more and more about soft failures and also many that have CI's have been re-implanted due to failures. I wish the soft failures and re-implant rate were available to help folks make informed decisions. What a crock!!!
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Just goes to show you where the motivation lies. Manufacturers have absolutely no concern over the way the CI issue affects not only users, but families and entire communities as well. Its all about that bottom line: how big is the profit!!!
 
[Mod's Edit - previous quote removed]

Not necessarily. The manufacturers are profit driven. That's not to say they are not concerned about advancing the technology but you have to admit, given how they measure success, they are painting an inaccurate picture. If a person gets a CI and the CI itself is functioning but the person gets no benefit, that is considered success. Please don't say that you agree with that method of measurement. Especially when success rates are a major driving factor in ones decision. As I understand it, its the FDA (in the US) that allows this as well. Personally, I think it’s a crock and it smacks of profitisim.
 
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rockdrummer said:
...but you have to admit, given how they measure success, they are painting an inaccurate picture. If a person gets a CI and the CI itself is functioning but the person gets no benefit, that is considered success...
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What is your source for that statement and BTW how do you determine whether a person derives a "benefit" or not from a ci?
 
rockdrummer said:
Not necessarily. The manufacturers are profit driven. That's not to say they are not concerned about advancing the technology but you have to admit, given how they measure success, they are painting an inaccurate picture. If a person gets a CI and the CI itself is functioning but the person gets no benefit, that is considered success. Please don't say that you agree with that method of measurement. Especially when success rates are a major driving factor in ones decision. As I understand it, its the FDA (in the US) that allows this as well. Personally, I think it’s a crock and it smacks of profitisim.
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I'm still not sure whether including soft failures in success rates is something that is easy to measure or collate. How would it be expressed in terms of being meaningful to users and potential users across the board? Have you actually written to the manufacturers and asked them why this isn't being done? You appear to have taken the easy assumption that it's the case out of purely deceptive reasons but it may not be that simple.

This is an area that we need to think more about and explore rather than quickly arriving at conclusions of "crock" and "profitism".
 
rockdrummer said:
That's not to say they are not concerned about advancing the technology but you have to admit, given how they measure success, they are painting an inaccurate picture. If a person gets a CI and the CI itself is functioning but the person gets no benefit, that is considered success. Please don't say that you agree with that method of measurement. Especially when success rates are a major driving factor in ones decision. As I understand it, its the FDA (in the US) that allows this as well.
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If a patient has heart bypass surgery, but then can't lower their cholesterol (due to behavior, poor genetics, whatever), does that make the surgery a 'failure'? There are a lot of definitions for failure, and not all of them are controlled by the company. For most medical procedures, there is a "failure rate" that is different than the "optimal outcome" or "satisfactory outcome" rate. With CIs, where "satisfactory outcome" is so subjective, these measurements become fuzzy.
 
What is a "soft" failure? I think I know but want to make sure. Thanks!
 
While we are on the subject of CI companies and their motivations...

There are no simple answers to a complex and complicated technology that provides tremendous benefits to people without hearing. This is especially true if the "older" more simple technology (HAs) doesn't do the trick anymore. The sound bites just don't do justice to this issue...

Jillio - What a trite answer that has no data backing such a stance. The original intent was laudable and noble in what it accomplishes. They don't make the kind of money that MS is well known for. Just because it is a company and have some profit motive, it doesn't mean it is worthless. Until there is a better way for driving businesses and keep them going...the profit motive is the best way to measure success. Remember there are degrees of success...or better put we are not dealing with Enron here... At least in this case of the CI companies, many people have benefited from their products and there aren't millionares left and right in the companies.

Rockdrummer - Let's ask this in a different way. If there is a heart procedure that saves thousands of lives a year but fails a couple of people maybe more, do we call that a failure or just the way the dice is rolled? Not everybody benefits from the promises of technology. Perhaps there needs a better way to measure success but the fact remains nobody knows exactly why most people tend to benefit and some don't. There are reasons that go beyond the CI itself and of no fault of the company. So from that standpoint, that makes it very difficult to pinpoint what makes a success or not. One more thing, there is managing expectations and that skews the results as well. We all have heard the second hand hype what a CI can do. Of course, most of us know better as well but the world out there doesn't know that.
 
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