Hearing people's view of CI

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rick48 said:
Sorry but there is no irony but only real life experiences as I have raised a child with a ci who is now an adult, have you?

If you have not, then I have absolutely no interest in what you have to say about raising a child with a ci but if you have, then I would be interested in what challenges you experienced?


?

You may not like to hear it but the overwhelming majority of the parents I have met over the last 25 years who made the decision put time, effort and research into their decision. It is not a decision lightly made and for those who chose the implant for their child, it is one usually made because of what they believe the cochlear implant can provide their child and not based on fear of a life without one.
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Rick, you do not understand that your experiance with your daughter was equalivant to a 1940's era kid (first generation to be aided) suceeding orally and in the mainstream. Yes, it's good and amazing that your daughter did so well......but even audilogically HOH/HA kids may not have done as well as your daughter. God, your daughter did not even have social issues or resource room (from what I understand, she was just a minimal accomondations kid) or need to transfer to Clarke! All I can say is that if your daughter had started really struggling socially and or academicly, or been in a school district where you were told "oh your daughter's not really deaf" or a school where the other students thought that your daughter was mentally handicapped, depsite taking TWO foriegn languages (as happened to me) or a school that blamed YOU for not being able to hear a teacher with a very soft voice (that even my hearing father couldn't hear)........your kid's experiance would have been VERY different!
And I disagree that many of the parents didn't make the decision to implant based on fear of a life without one. The oral parents I know are SO convinced that the way to sucess is through The Hearing World Only, that they don't get that there's benifit with disabilty stuff too. Those parents are the same parents who if their kid was low vision/blind wouldn't let them use Braille or other blind ed methods b/c it doesn't seem "normal" or healthy.
 
DeafCaroline said:
"The fact is the OP made a simplified and generalized statement about why parents choose cis for their children, "jump at them" I think was the scientific term he/she used."

rick48 - go back and read the OP's post again. Nowhere did she mention hearing parents. She was talking about hearing people in general and their misconceptions of CIs.

talk about reading things into what was not there.
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Good point....and hell look at the wording used for auditory verbal therapy and oral programs.....YAY your kid doesn't have to use ASL and can be NORMAL AND HEALTHY!
 
It's just a dead horse he is beating. CI is not going anywhere, and his family's experience as pioneers is really past history.

It's a new day, and the CI companies really need to get new spokesfolk who have had positive experiences in the modern day.

This guy is anti deluvian, and it's a wonder people even notice him or bother to respond.
 
Rick48, you need to get over yourself.

All of us know that time is of the essence when it comes to deciding whether or not to implant a child with a CI. The earlier it is done, the more benefits there are. There is no disputing this. No one is TRYING to dispute this.

What is also known is that there is a lot of risk involved with being implanted. I myself have permanent brain damage from my surgeries and I know for a fact that I am not the only one. It is a lot more common that the doctors will admit. Additionally, implanting a child early may provide them with the benefits they get from that, but it also makes life more difficult for them than necessary elsewhere - they will have to have more surgeries later in life to upgrade those implants so that it wasn't in vain, and the risk is still the same, additionally, no one mentions that when they are an adult and on their own they will have to find a way to pay for the parts that get worn out, and they are EXPENSIVE.

All that hearing parents tend to see is MY CHILD MUST HEAR OR ELSE. Even if they are aware of all the other stuff, they don't GET it. Yes I am generalizing, but it is very common.

Hearing people put too much weight on those benefits. Not having hearing is NOT the end of the world and it does NOT impede a child from succeeding in the world. Those of us who are deaf, CI or not, can verify that. Hearing parents tend to overlook the fact that there is a lot more to life than hearing. Sorry, but there is. Sometimes the risks, the complications, and the cost involved with being implanted just isn't worth it.

That is why people are saying that the person who is a candidate should be allowed to make that decision for themselves. It is more important that they get to choose their own quality of life and whether or not they want the risks of brain damage or other health issues can cost issues as an adult to be able to hear. That should be THEIR decision. That stuff can't be taken back. Nor can they be guaranteed to always be able to afford the maintenance involved with their implants. But you can always learn to sign and get along in this world just fine without being able to hear if that's what you chose.

Personally, I feel that I made a mistake getting implanted, and I wish that I could take that decision back. I first got it done when I was 23. It is a sore point in my life. I don't deny that I can hear a lot more, but between the brain damage and the inability to pay for upkeep (I haven't used one side in a year and a half because I can't afford the parts and mappings) just wasn't worth it because I am STILL hard of hearing, I am NOT hearing. I didn't lose my hearing until 4, and then I got hearing aids, so it wasn't a case of not utilizing my brain's hearing functions early enough.

It was hard enough to make this decision, as an adult, on my own. I made the wrong decision. IF my mother had made this decision for me I would be very angry. At least I only have myself to blame. My mother made a LOT of mistakes raising me, especially in regard to my deafness, but the one thing she did right was not implanting me and leaving that decision up to me.

CI's are just not all that they are cracked up to be. That is the cold, hard truth. They are amazing, granted... but they are not always the answer. And unfortunately, as much as you and the other parents don't want to hear it, guess what? You're NOT the ones that know what that answer is for your child when it comes to this. You know who is? Your child. When he or she is old enough to decide for themselves. It is better that the imposition CI's can be on one's life is THEIR decision, and not forced on them by desperate parents that feel like nothing is more important than hearing. Should they decide they want to be implanted, they will STILL get benefit and make leaps and bounds of progress even if implanted as an adult. So it's not "now or never" anyway. True, they won't get as much benefit as if they had been implanted as a child, but when you look at the big picture, that's a small sacrifice for one's "quality of life" freedom - it's a small sacrifice for them being able to choose whether or not they want that imposition on their lives themselves.
 
rick48 said:
Sorry but there is no irony but only real life experiences as I have raised a child with a ci who is now an adult, have you?
Click to expand...

Your daughter is deaf. You aren't. Your experience is completely void of any relevance. Only your child's firsthand experience is of any relevance. End of the discussion.
 
rick48 said:
Sorry but there is no irony but only real life experiences as I have raised a child with a ci who is now an adult, have you?

If you have not, then I have absolutely no interest in what you have to say about raising a child with a ci but if you have, then I would be interested in what challenges you experienced?

Before you get too bent out of shape go back and re-read my post, I did not say parents know what is best for their child, I said they know their child the best.

However, I can take your argument and flip it right back at you, if you cannot hear or have never experienced the ability to hear then how can you know what is best for a child? How can you truly say there is no benefit in being able to hear? Let's take it a step further, is it your position that fathers cannot know what is best for their daughters or mothers for their sons because they are a different sex? What about inter-racial marriages, are those parents incapable of knowing what is best for their children because they do not have the same racial make-up?

The fact is the OP made a simplified and generalized statement about why parents choose cis for their children, "jump at them" I think was the scientific term he/she used. You may not like to hear it but the overwhelming majority of the parents I have met over the last 25 years who made the decision put time, effort and research into their decision. It is not a decision lightly made and for those who chose the implant for their child, it is one usually made because of what they believe the cochlear implant can provide their child and not based on fear of a life without one.
Click to expand...

Wow...that right there is very audist. I cant hear but I, along with many others who are deaf, have raised children to be successful and happy adults.
 
Lily7 said:
Rick48, you need to get over yourself.

What is also known is that there is a lot of risk involved with being implanted. I myself have permanent brain damage from my surgeries and I know for a fact that I am not the only one. It is a lot more common that the doctors will admit. Additionally, implanting a child early may provide them with the benefits they get from that, but it also makes life more difficult for them than necessary elsewhere - they will have to have more surgeries later in life to upgrade those implants so that it wasn't in vain, and the risk is still the same, additionally, no one mentions that when they are an adult and on their own they will have to find a way to pay for the parts that get worn out, and they are EXPENSIVE.

All that hearing parents tend to see is MY CHILD MUST HEAR OR ELSE. Even if they are aware of all the other stuff, they don't GET it. Yes I am generalizing, but it is very common.

Hearing people put too much weight on those benefits. Not having hearing is NOT the end of the world and it does NOT impede a child from succeeding in the world. Those of us who are deaf, CI or not, can verify that. Hearing parents tend to overlook the fact that there is a lot more to life than hearing. Sorry, but there is. Sometimes the risks, the complications, and the cost involved with being implanted just isn't worth it.

That is why people are saying that the person who is a candidate should be allowed to make that decision for themselves. It is more important that they get to choose their own quality of life and whether or not they want the risks of brain damage or other health issues can cost issues as an adult to be able to hear. That should be THEIR decision. That stuff can't be taken back. Nor can they be guaranteed to always be able to afford the maintenance involved with their implants. But you can always learn to sign and get along in this world just fine without being able to hear if that's what you chose.

Personally, I feel that I made a mistake getting implanted, and I wish that I could take that decision back. I first got it done when I was 23. It is a sore point in my life. I don't deny that I can hear a lot more, but between the brain damage and the inability to pay for upkeep (I haven't used one side in a year and a half because I can't afford the parts and mappings) just wasn't worth it because I am STILL hard of hearing, I am NOT hearing. I didn't lose my hearing until 4, and then I got hearing aids, so it wasn't a case of not utilizing my brain's hearing functions early enough.

It was hard enough to make this decision, as an adult, on my own. I made the wrong decision. IF my mother had made this decision for me I would be very angry. At least I only have myself to blame. My mother made a LOT of mistakes raising me, especially in regard to my deafness, but the one thing she did right was not implanting me and leaving that decision up to me.

CI's are just not all that they are cracked up to be. That is the cold, hard truth. They are amazing, granted... but they are not always the answer. And unfortunately, as much as you and the other parents don't want to hear it, guess what? You're NOT the ones that know what that answer is for your child when it comes to this. You know who is? Your child. When he or she is old enough to decide for themselves. It is better that the imposition CI's can be on one's life is THEIR decision, and not forced on them by desperate parents that feel like nothing is more important than hearing. Should they decide they want to be implanted, they will STILL get benefit and make leaps and bounds of progress even if implanted as an adult. So it's not "now or never" anyway. True, they won't get as much benefit as if they had been implanted as a child, but when you look at the big picture, that's a small sacrifice for one's "quality of life" freedom - it's a small sacrifice for them being able to choose whether or not they want that imposition on their lives themselves.
Click to expand...

AMEN!!!!!!!!!!!!!!!!!!!! CIs rock, but yes parents are SO desperate for their kids to function "normally" that they think "ah a CI will allow a deaf kid to function normally." It does not. That hypothesis is based on the assumption that HOH kids are more hearing then deaf, and don't "need" "speshal needs" stuff. And you know what? ALL those pro CIers and pro HAers and pro oralists fail to reconize that depending on CI and HA costs MONEY. Not everyone has the money for upgrades or the latest hearing technology....hell its hard for even healthy young folks to afford health insurance/health care costs!
 
Bottesini said:
It's just a dead horse he is beating. CI is not going anywhere, and his family's experience as pioneers is really past history.

It's a new day, and the CI companies really need to get new spokesfolk who have had positive experiences in the modern day.

This guy is anti deluvian, and it's a wonder people even notice him or bother to respond.
Click to expand...
Good analysis. It's a time for everything, guess he hasn't noticed the world have moved on.
 
Interesting the ongoing "dialogue" with Rick 48 re the fact he personally doesn't have a Cochlear Implant but had to make the decision for his daughter a long time ago. Thus whatever he says is "irrelevant" because he personally isn't DEAF. Have I "misread some of the comments"?

Does the above apply to any comment made by "latedeafened bilateral DEAF" persons in their actual experience re their Cochlear implant?

An ongoing debate- it seems.
 
Not sure exactly who has "hidden agendas" which seems to be in the "ear of the beholden".
 
drphil said:
Not sure exactly who has "hidden agendas" which seems to be in the "ear of the beholden".
Click to expand...

It's not really hidden. There is a good reason for the reaction.

And as for the late deafened bilateral CI user, there is also a reason a lot of people try to include you and cut you some slack, as you really don't mean any harm.
 
as much as we have disagreements, I still like this post, your post here is excellent. Kuddos to you. Good day.:wave:

Lily7 said:
Rick48, you need to get over yourself.

All of us know that time is of the essence when it comes to deciding whether or not to implant a child with a CI. The earlier it is done, the more benefits there are. There is no disputing this. No one is TRYING to dispute this.

What is also known is that there is a lot of risk involved with being implanted. I myself have permanent brain damage from my surgeries and I know for a fact that I am not the only one. It is a lot more common that the doctors will admit. Additionally, implanting a child early may provide them with the benefits they get from that, but it also makes life more difficult for them than necessary elsewhere - they will have to have more surgeries later in life to upgrade those implants so that it wasn't in vain, and the risk is still the same, additionally, no one mentions that when they are an adult and on their own they will have to find a way to pay for the parts that get worn out, and they are EXPENSIVE.

All that hearing parents tend to see is MY CHILD MUST HEAR OR ELSE. Even if they are aware of all the other stuff, they don't GET it. Yes I am generalizing, but it is very common.

Hearing people put too much weight on those benefits. Not having hearing is NOT the end of the world and it does NOT impede a child from succeeding in the world. Those of us who are deaf, CI or not, can verify that. Hearing parents tend to overlook the fact that there is a lot more to life than hearing. Sorry, but there is. Sometimes the risks, the complications, and the cost involved with being implanted just isn't worth it.

That is why people are saying that the person who is a candidate should be allowed to make that decision for themselves. It is more important that they get to choose their own quality of life and whether or not they want the risks of brain damage or other health issues can cost issues as an adult to be able to hear. That should be THEIR decision. That stuff can't be taken back. Nor can they be guaranteed to always be able to afford the maintenance involved with their implants. But you can always learn to sign and get along in this world just fine without being able to hear if that's what you chose.

Personally, I feel that I made a mistake getting implanted, and I wish that I could take that decision back. I first got it done when I was 23. It is a sore point in my life. I don't deny that I can hear a lot more, but between the brain damage and the inability to pay for upkeep (I haven't used one side in a year and a half because I can't afford the parts and mappings) just wasn't worth it because I am STILL hard of hearing, I am NOT hearing. I didn't lose my hearing until 4, and then I got hearing aids, so it wasn't a case of not utilizing my brain's hearing functions early enough.

It was hard enough to make this decision, as an adult, on my own. I made the wrong decision. IF my mother had made this decision for me I would be very angry. At least I only have myself to blame. My mother made a LOT of mistakes raising me, especially in regard to my deafness, but the one thing she did right was not implanting me and leaving that decision up to me.

CI's are just not all that they are cracked up to be. That is the cold, hard truth. They are amazing, granted... but they are not always the answer. And unfortunately, as much as you and the other parents don't want to hear it, guess what? You're NOT the ones that know what that answer is for your child when it comes to this. You know who is? Your child. When he or she is old enough to decide for themselves. It is better that the imposition CI's can be on one's life is THEIR decision, and not forced on them by desperate parents that feel like nothing is more important than hearing. Should they decide they want to be implanted, they will STILL get benefit and make leaps and bounds of progress even if implanted as an adult. So it's not "now or never" anyway. True, they won't get as much benefit as if they had been implanted as a child, but when you look at the big picture, that's a small sacrifice for one's "quality of life" freedom - it's a small sacrifice for them being able to choose whether or not they want that imposition on their lives themselves.
Click to expand...
 
deafdyke said:
AMEN!!!!!!!!!!!!!!!!!!!! CIs rock, but yes parents are SO desperate for their kids to function "normally" that they think "ah a CI will allow a deaf kid to function normally." It does not. That hypothesis is based on the assumption that HOH kids are more hearing then deaf, and don't "need" "speshal needs" stuff. And you know what? ALL those pro CIers and pro HAers and pro oralists fail to reconize that depending on CI and HA costs MONEY. Not everyone has the money for upgrades or the latest hearing technology....hell its hard for even healthy young folks to afford health insurance/health care costs!
Click to expand...

wtf? CI sucks, not rocks. you shift around way too much, half the time you dont know what you're talking about.
 
DeafCaroline said:
drphil - let's say some people have hidden agendas.
Click to expand...

...and...be afraid, be Very afraid, US govts and Alien govts on the moon have ordered the implants to moniter and have a switch to flick if they want you to go on Postal rage so to cover up a 'suicide'...Be AFRAID,....that is; the hidden intergalactic ALIEN conspiracy (stationed on our moon , just watch the "Apollo 18" film, this is the clue to is hidden agenda.......
 
Grummer said:
wtf? CI sucks, not rocks. you shift around way too much, half the time you dont know what you're talking about.
Click to expand...

Grummmer, what the hell are you talking about? Yes, a CI provides SOME access to the hearing world. I'm not being all AG Bell about the CI for crying out loud.All a CI is, is a TOOL. It's not good, it's not bad. If you do oral only with CI with the thinking that it will provide unfettered access to the hearing world, yes it's bad. But you can do that with HA too!
 
DeafCaroline said:
"The fact is the OP made a simplified and generalized statement about why parents choose cis for their children, "jump at them" I think was the scientific term he/she used."

rick48 - go back and read the OP's post again. Nowhere did she mention hearing parents. She was talking about hearing people in general and their misconceptions of CIs.

talk about reading things into what was not there.
Click to expand...

Caroline is exactly right. I'm not saying that all hearing parents who choose CI for their children are misinformed. However, I'm saying that too many are, and it's a problem.
 
Oh and rick, how come you talk to oral only adults and they say they don't feel like they fit into the hearing world, and they don't have access to the deaf world b/c they don't sign? You do not understand the enourmous social emotional impact that oral only has. You have NO idea what it's like to be thought of as mentally handicapped or not taken seriously b/c of your accent. You have NO idea what it's like to be lumped in with the dumbasses in special ed, you have no idea what it's like to have a lot of causal friends but never have had a real boyfriend or girlfriend or much of any social life.
 
And if oral only is so good then how come the graduates of oral schools like CID/Clarke/St. Joseph's inadvertly end up learning ASL?
You know, you're pretty much like one of those inclusion advocates..l. you do not understand the downsides of mainstreaming and making a kid with a disabilty function "normally"
 
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