Deaf children's parents must decide on surgery

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I think what's important for anyone is to make an informed decision. The CI itself is not inherently bad, it's a glorified hearing aid. It's more the perception of what it does and what's realistic to expect. Having a CI doesn't preclude someone from using sign language. The medical professionals should be held accountable for giving complete accurate information and not instilling fear of sign language.
 
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Nobody said that CI is a horrible thing. We know that CI is good for speech development but it's too much for tiny child to face many therapies etc.

You know that baby to toddler can't take care of themselves careful after CI. It's too much for the parents to watch their babies to toddlers hurt CI on their "head". It's scary because they don't understand how to take care of themselves.

From 7 years old children knows how to take care of themselves with the education from their parents.

I beleive it's child or adult's choice. I will be happy to support my child's choice if he or she want to have one and willing to train speech development.
 
PrincessTabu--Oh no, I don't even think that CI is evil at all....I don't mind having a CI or for anyone for that matter but the only thing I am strongly against CI is when it comes to a younger child who is unable to make a choice in this too, that is all to it....If you want to see your child be happy then the smart thing to do is let the child be involved in this kind of decision when the child is old enough to make that kind of choice along with the parents of course...;)


Deafnicity-- Wow, I'm really impressed with your post there and agreed, Thank you for sharing that with us :)..

Liebling--You're are a great mom there, and I would be nice to see more moms like you out there *hugs*....

TiaraPrincess-- You're right, I don't know what it like to be implant with CI since I don't live in their shoes to know what it feels, but we DO have the right to share our opinions, views and what we believe about CI afterall we are Deaf ourselves....Actually I believe EVERYONE has that right....:)

Tousi-- I didn't quite understand your post there.....

Roadrunner-- I agree that 8 years old is a bit wise enough to make that choice with the parents, and good point too honey :aw: ...
 
^Angel^ said:
PrincessTabu--Oh no, I don't even think that CI is evil at all....I don't mind having a CI or for anyone for that matter but the only thing I am strongly against CI is when it comes to a younger child who is unable to make a choice in this too, that is all to it....If you want to see your child be happy then the smart thing to do is let the child be involved in this kind of decision when the child is old enough to make that kind of choice along with the parents of course...;)


Deafnicity-- Wow, I'm really impressed with your post there and agreed, Thank you for sharing that with us :)..

Liebling--You're are a great mom there, and I would be nice to see more moms like you out there *hugs*....

TiaraPrincess-- You're right, I don't know what it like to be implant with CI since I don't live in their shoes to know what it feels, but we DO have the right to share our opinions, views and what we believe about CI afterall we are Deaf ourselves....Actually I believe EVERYONE has that right....:)

Tousi-- I didn't quite understand your post there.....

Roadrunner-- I agree that 8 years old is a bit wise enough to make that choice with the parents, and good point too honey :aw: ...
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LOL! Good responses! My post was a bit reactive, so I changed it to be more in line with my thinking. As a parent, I hear too much bashing of parents, so I was a little too sensitive. The issue of course is that the opposing view is that the sooner you implant, the more auditory language that child is picking up. Of course, that is debatable, because many people feel children can pick up language thru sign. But, the most diligent parent cannot learn sign immediately, it takes time. Soooo, there are many views and I don't have a strong opinion in that I don't think there's one right answer. I think the best thing is to educate people, to stop attacking and instilling fear on all sides. That way, the children win, and that's the ultimate goal.
 
You are right Angel that everyone has opinion to their own belief's if if were their child, and that's when I really don't care. What I care is that it should not change for everyone like the deaf tried to in the past. Some of you realize that 2-3 years old are the most critical years? 7 years old is a tad old for that.

Liebling, that's what I said that there are parents who may be forcing at 11 years old, but it's not like that for everyone. That's what I meant in a better way to approach the CI to have parents evaluate each of them for why they want the CI and make sure it's not unrealistic expectations.

Let me ask you something that I thought about. You said it's the child's choice. Would you mention them at 7 years old if they want that choice or only if they show interest after seeing their best friend have a CI? The reason is because most children who express interest are those who see their classmates have them.

Also, as a child, I didn't mind going to therapy. In fact, I really missed them. They were so much fun because it wasn't anything boring. They had games with words to make it entertaining and not draining for children. It's why I think it's weird to say that it's so much for children. To me, listening with my hearing aids and for speech was a discovery. Children are usually curious to produce language--that's what I was.

I just think that it's nice to be open-minded and not shut it down to 7 years old because we all know that many benefit and are happy too. It wouldn't be fair if the age was changed. It's too much generalization. Because I know that many beneift, I strive to think of a better way to help parent's make informed and better decisions by having a psychological evaluation, for example.

That's what I think, and I don't really care if it's your child that you decide not to do it. That's fine because they are your responsibility, and you have your plans, but to generalize is what I don't find very fair. How do you think it makes someone who may have been implanted young read this and realize they are being unsupported or "trashed" because their parents were "wrong" because you believe it was wrong?
 
Interesting, that's why I would not accept these risk on my baby to toddler

Risks

As with all operations, there are a few risks of surgery. These include:
Dizziness 00045650.html
Facial paralysis 00059790.html (rarely)
Infection at the incision site.

Scientists aren't sure about the long-term effects of electrical stimulation on the nervous system. It is also possible to damage the implant's internal components by a blow to the head, which will render the device unworkable

http://www.chclibrary.org/micromed/00043180.html
 
TiaraPrincess,
I'm not closed mind when CI comes. I beleive it's child alone choice, period.

Let me ask you something that I thought about. You said it's the child's choice. Would you mention them at 7 years old if they want that choice or only if they show interest after seeing their best friend have a CI? The reason is because most children who express interest are those who see their classmates have them.
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Why not, I let my children to mix deaf and CI culture to see themselves what they want. I would be happy to search the information if my children want to have it and support their wish. I would sit with them to have a good talk and give them the chance to think about.

Example about 8 years old child of my good friend told me himself that he don't want CI. How could 8 years old say this to me? Because he has the feeling. His mother let his son to mix with CI and deaf culture to see himself.

Well, I don't think it's too late for 7 years old to have CI. I would wear my child with HA under 1 year old until they are familiar with it then...........

My deaf friend wear HA when she was 6 months old. She speaking like HOH. She CAN phone.
I thought she's HOH when I first met her. I suggest her about CI issue but she's happy with HA.

I'm agree that CI is good useful for young children but not babies to toddler.
 
Liebling:-))) said:
Interesting, that's why I would not accept these risk on my baby to toddler

Risks

As with all operations, there are a few risks of surgery. These include:
Dizziness 00045650.html
Facial paralysis 00059790.html (rarely)
Infection at the incision site.

Scientists aren't sure about the long-term effects of electrical stimulation on the nervous system. It is also possible to damage the implant's internal components by a blow to the head, which will render the device unworkable

http://www.chclibrary.org/micromed/00043180.html
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You do realize that Children heal faster and have less symptoms than adults?? All of that is rare, and I experienced dizziness for one week. Children usually get up the next day to play.

That's okay, it's your choice and nothing but your own. Still it disheartens me to hear people trashing parents' choice to implant younger children because a child just like that may be reading this. I just see it a bit harsh to generalize. Of course there are deaf people who can talk like HOH and talk on the phone, but if children show no benefit or little, why not go for it at age 2 or 3? After all, the girl started at 6 months. So crucial to hear during those early months. Not 7.
 
Well Sure

TiaraPrincess said:
In fact, there's no one with CI that I know of responding here...hmmm. You understand once you go through it.
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The logic of experential understanding only goes so far. I do not need to self mutilate myself in order so that I can understand the physical pain of those who have lost limbs. Moreover, when a person declares that their CI is working wonderful fine and dandy no problems everything is fine it is certainly within the rights of non-CIers to be skeptical. Afterall, for a long time the Cochlear Corporation was advetising the CI to be something that provided some benefit of telephone use to I think it was about 80% of CIers. Sounds nice until you read the fine print. "Some benefit" included as an operational definition knowing that the phone was ringing. It did not include conversation over the phone. Hence, people without a CI have a right to be skeptical. While the decision to get or not get a CI is individual, the assumption that the information given to candidates is clear -- is just nuts.

I myself have chosen not to get a CI for many reasons even though I am late deafened and the audiologists claimed that it would be great benefit to me. I do however, have the research experience of interviewing a number of former CIers. In fact, I am married to a former CIer. Her complications from CI are gutwrenching as the magnet and the elctrode MIGRATED. YIKES. This is not to portray CI users as monsters. However, the idea that complications cannot be mentioned is bogus. There are people out their with facial paralysis from CI surgery where incompetent surgeons cut facial nerves. There is also the problem of many people being over elctrically stimulated and requiring steroids to control facial movements. There are people who have contracted meningitis. Some CIers have even died from surgery. While the cases of such incidents are rare, the notion that a person should just ignore those complications and try it because they can't know until they have tried it is irrational. I don't have to drink gasoline to know that it is not for me.

And there is another matter - I have family members who have gotten a CI. People with the same genetic causes I have and I am not impressed with the results. In fact, I have four family members who are currently CI users and only one will swear by it and even she exaggerates its effectiveness - I've watched her miss words. I have also observed many CIers needing and requiring ASL interpreters and/or CART. This suggests to me that the CI benefits independent of other assistive listening devices or accomodations is EXXAGERATED.

Maybe not - consider that the mean and median score for monosyllabic words for CI users is less than 40% The reason the CI industries do not want to let you know what the standard deviations are is because it is possible for a person to come out of surgery with less hearing than prior to surgery. This is why they emphasize that the results are unpredictable.

And that is the key - the results are unpredictable and the common response to that is that experential understanding is needed. However, have you ever examined what happens to a person on the CI Forum who complains about their CI not living up to expectations - Tarred, feather, pittied, beaten, told to do it again, blamed for not trying hard enough,--- everything is blamed except the limitations of the technology and the failure of families to comprehend that it does not make a person hearing.
 
HA is not belong to Surgery
CI is belong to Surgery.

I choose to non-Surgery until the child is old enough to choose either they want.

To wear HA on baby to toddler is risk free.


Sure, I respect your choice. I only say what I have opinion, that´s all. I do not against every parents´s decision because its up to them.


I do not expect everyone follow my opinin but their own decision because everyone has different.
 
deafnicity,

Please see my PM (Private Message).

I´m agree everything what you say in your post.

3 toddlers died on CI operation in Germany last year
100 babies to toddlers in Germany got meningitis infection after CI operation last year.
Very few got facial paralysisa after CI operation.

A girl got facial paralysis last summer 2004. She´s daughter of my friend´s co-worker. I learned about those happened from that person who told me about their friend´s daughter. What a sad.
 
deafcinity. WHO told you that no one has a right to know about complications or research every bit possible about it? Who? Me? Don't point fingers or go on and on about stuff I didn't say, okay?

I didn't say that I am perfect hearing or don't miss anything. I do miss things, but it has improved the quality of my life. There are days that I do think of the bad of it, but I do have to remind mysel of the ones that I have gained. I read an article on SHHH Magazine about this man recently. He says everything that a real CI person will say. He experiences many of the things that I do, but it's nothing to be pitied. He likes the improvement despite its imperfection and so do I. The CI never promised me a cure. Only yourself find it pitiful. Companies claim things. Hey, that's what they do, which is why I researched everything, everything, everything before I had it done. I am not a stupid dumbs-it to believe everything, but some of you exaggerate what you say as if it sounds like it's the majority or half the cases of implantees. That's absolutely not true. People didn't die from CI. Please explain what and how if you can? They died from meningitis being released again from fluids that remained in the cochlea. It's not from the surgery or the CI itself. You fail to mention that companies have released documents about that even telling them to get vaccinations to prevent it.

Do you fail to realize that nothing in surgery is perfect? Do you fail to realize that there are trial and errors in every surgery done? That's the way to improve devices out there. What should we do despite the few who have complications? Test it on monkeys before humans? I don't get your point. I only get that it's your choice and no one else to make your decision, which is fine.

Yes, you have every bit of right to be skeptical according to your own soul, mind and your lifestyle. Who said not? I am only saying you're exaggerating the numbers of incicents that happened. You fail to mention that dizziness IS normal after surgery. Facial paralysis has unfortunately happened in rare cases, but that is also mentioned everywhere. You make it sound vague without elaborating what's normal and what's not. Without that, you scare people with misinformation. I had a paper listing everything that could happen with it. I don't remember MY audiologist or doctor lying to me or making it sound like a perfect cure. All they could promise was enhanced lipreading. They don't exaggerate, but why do some of you make it sound like it's the end of the world?

The CI is here to stay. It's no one's business what parents' decide for their child to get a CI. It's not wrong because there are kids happy with it. Do you want to hide this fact too? Do you want to hide the fact that it's crucial during 2-3 years age for language? What's the point in getting it at 7? That's like---let me tell you--taking a chunk of a couple of years for language development.

Hey, you bring your side of negatives. I bring out the positives. Fair?
 
PrincessTabu said:
LOL! Good responses! My post was a bit reactive, so I changed it to be more in line with my thinking. As a parent, I hear too much bashing of parents, so I was a little too sensitive. The issue of course is that the opposing view is that the sooner you implant, the more auditory language that child is picking up. Of course, that is debatable, because many people feel children can pick up language thru sign. But, the most diligent parent cannot learn sign immediately, it takes time. Soooo, there are many views and I don't have a strong opinion in that I don't think there's one right answer. I think the best thing is to educate people, to stop attacking and instilling fear on all sides. That way, the children win, and that's the ultimate goal.
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Actually I enjoyed reading and listening to both sides, because that is how I learn by it...If I only could hear one side then I would have never approved the CI in the first place since I believe back then that when a person is Deaf, they should just accept the fact and live with it, not change it...but after learning more how CI really does work for ALOT of people, I'm not saying ALL of them but more out there who has show so much improving with the use of CI implanted....I can tell you I am really impressed and amazing how some people turn out great and is able to hear alot more than wearing just hearing aids....

But when it comes to small children I see a different view on this, it more of why can't a child be in this too afterall the child is going to wear them and will they be happy? that I am not so sure....so I'm still stuggling on it and also going thru an operation is alot scary to be honest, that's something I can't image a younger child going thru that....Is it wrong to feel this way? I dunno, I guess I am just a mother who doesn't like to see my children go thru this when they are so young you know.....

I had made my share of mistakes about CI implant, but I am learning and keeping my eyes open on both sides.....I still stand on what I believe, by having the child and the parents making that choice together... :(
 
TiaraPrincess said:
You are right Angel that everyone has opinion to their own belief's if if were their child, and that's when I really don't care. What I care is that it should not change for everyone like the deaf tried to in the past. Some of you realize that 2-3 years old are the most critical years? 7 years old is a tad old for that.
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True but still 2-3 years old is way to young to understand about CI, I think 7 and above are more wiser enough to understand the difference between a CI and hearing aids...

Let me ask you something that I thought about. You said it's the child's choice. Would you mention them at 7 years old if they want that choice or only if they show interest after seeing their best friend have a CI? The reason is because most children who express interest are those who see their classmates have them.
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True, but it also helps a child to understand what CI does for those classmates and maybe wanted to hear more like them....It's nice to have other children around with the ones who already have implanted, it may help them choose between CI and hearing aids.....

How do you think it makes someone who may have been implanted young read this and realize they are being unsupported or "trashed" because their parents were "wrong" because you believe it was wrong?
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Oh no, I'm not saying the parents are wrong for implanting their younger child with CI, I'm just pointing out that it should be a child and the parents working together by agreeing to have a CI instead of the parents making that choice alone without the child involved....
 
More of the Same

TiaraPrincess said:
deafcinity. WHO told you that no one has a right to know about complications or research every bit possible about it? Who? Me? Don't point fingers or go on and on about stuff I didn't say, okay?
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Oh I love whizzing contests with CI advocates. It is always a challenge to stay to the point as the threads so often drift from the original area of contention. I quoted you concerning your statement/question that implied that not having a CI meant lesser understanding than the individual with experential understanding. I don't believe that to be true. For example, a skilled statistician would be able to critique the statistical methods as applied in Cochelar Corporation literature and reduce their claims to pulp fiction. They don't have to have a CI in order to see that some exaggerations are taking place.

I haven't a clue as to why you are so defensive. You made your decision to get a CI. Fine. I hope it works great for you. I've made my decision not to get a CI. My decision is not a personal attack on your decision. Do whatever you want. I simply convey that I hope indivudals are fully informed of the limitations of CI technology.
 
I love my thread here!!!!

I see BOTH sides here.

I see all is good and bad advantages here.
 
Defensive? Because you don't know how to read my post appropriately without going on and on about something that I didn't say. Yeah, I don't care if you never got the CI. I don't give a flying fig. I never recommend them to anyone at all. I give my point by explaining both sides. I don't need to be vague by pointing the negatives. When I was curious about CI someone told me that it causes infections and one of her students still used an interpreter. What's that saying? "Stay away from CI because it's so terrible." I then did the research and found out the opposite of what she said. See, you didn't read carefully. I HAVE the CI already. It's not self-mutilation---WTF? That's not even a close word to what a CI is.

Why is your family member still wearing the CI? Huh? It must mean they like what they hear however it is. Maybe not for you, but should your opinion matter as a the true portrayal of what a CI is or if they like it?

BTW-the migration problem IS mentioned in the pamphlet. Do your research carefully.
 
^Angel^ said:
Actually I enjoyed reading and listening to both sides, because that is how I learn by it...If I only could hear one side then I would have never approved the CI in the first place since I believe back then that when a person is Deaf, they should just accept the fact and live with it, not change it...but after learning more how CI really does work for ALOT of people, I'm not saying ALL of them but more out there who has show so much improving with the use of CI implanted....I can tell you I am really impressed and amazing how some people turn out great and is able to hear alot more than wearing just hearing aids....

That's why I like this forum Angel. There's no insidious control by a small group of people; people are honest and open to different opinions. There's no my way or the highway, no telling certain people they don't have the right to an opinion. I've seen a lot of unhealthy groups, and that's why I like you guys SO MUCH! :D

Remember, by the age of 7, the most critical stage of language development is already passed. That's the argument for getting the CI early on. btw, my child doesn't have a CI, but I'm not opposed to them. I'm only opposed to the perception about them. They don't cure deafness, they don't make a person hearing, they don't take the place of using sign language. I don't think the CI itself is bad. It's like everything else, it's how it's used.

Have a great Thanksgiving!
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Angel,

I understand. The way that I see it is that at 2 or 3 years old children can't decide, so parents have to decide for them at 2 or 3 years old. You know...without the other children implanted before age 7, your child (if you had a deaf child) wouldn't be able to see the kids around him to decide anyway. It would be a guess for them. That's okay, if it were your own childs and your decision, but I respect it as a parents' choice because of the crucial language stage at 2 or 3 years old. I generally prefer that they make the criterias and evaluations stricter and make sure they thoroughly think about it.
 
I am one of those child who get CI... but im also one of those rare children who made decision of getting CI.. my personal opinion.. CI is GREAT but again i perfer child to make a decision not parents force on child..

heres few facts (correct me if im wrong)

at age of birth to age 3 is when a child develop language... its the best time for child to hear and learn...

once a child before age 3 has develop language in their mind.. it stays there for the life

so more early age it is.. more better for a child to get CI or hearing aid because it will help greatly with learning especially with english...

BUT... i personally think a child shouldnt be burden with all responsiblity especially when they could get hurt easily in roughplaying. so its kinda no win-win situation here... it is good idea for a child to be able to hear as early as possible but not with CI .. i remmeber how much hard work it was for me.. and all i wanted was to play. I wouldnt want that on another child.

just venting on my own opinion and from my own experiences
 
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