Docs want to force CI on her! She benefits great from HA!

deafdude1 · 10-16-2009, 09:02 PM

AUDISM FREE AMERICA: AFA: Hearing Mother of Deaf child speaks out!

Also, because I have made the decision to NOT implant Lily with a Cochlear Implant, The doctors have made me feel like I am committing child abuse. They have told me so,I am abusing my child because I opted NOT to have her implanted with a cochlear implant. I am happy to say we don’t see those doctors anymore.

Here is my issue with the Cochlear Implants and Lily. She is responding at 30 dbs with her hearing aides she is maximizing on her residual hearing but yet they want to implant her. Lily has a medical condition that will one day make her profoundly Deaf so they want to implant her now under that assumption. They are so eager to implant her… yet I resist this major brain operation…. This intrusive, invasive, brain surgery… I cherish my child as a whole being… I chose ASL instead. My daughter is bright, she’s brilliant, she’s capable of so much…. But those who don’t recognize ASL while never know.

My comments: I am very proud of the parents for resisting the insane CI hype! For the amount of residual hearing she has, CI is experimental and not FDA approved. You need 90db HL across the audiogram and her loss is much less than that. It's no surprise she benefits from HAs as much as others do with CI. When Lily's hearing gets down to 90db or worse, then the decision for CI(or some other technology) can be decided by Lily herself as she will be much older by then.

The doctors want to make lots of money implanting as many deaf people with CI. It's disgusting that greed has clouded their judgement. Many who get CI could have gotten plenty of benefits from HAs as is. I had a severe-profound HL since birth and I got plenty of benefits from HAs back then and there wasn't even digital HAs! The good thing is there wasn't any complicated programming so no worries about improperly programmed HAs, such as insufficient gain or too much SPL or some useless feature that gets in the way. My old analog HAs were great out of the box, I simply turned the volume dial as high as it would go without feedback. Today's digitals, if programmed properly would give another 15db more gain than the analogs I wore as a kid.

Any deaf children my brother, sister and cousins have, ill recommend an experienced audiologist who will fit the best HAs programmed to maximum gains so the deaf child can get access to sounds at 30db or better as long as the residual hearing does not exceed 100db HL. Ill explain to the parents that I did great with HAs and they should also do great with proper HAs and proper speech training. Ill also explain the importance of lip reading that can let the child understand most speech. Any doc who says it's child abuse is crazy and should be avoided like the plague! Those docs are terrible audists! There is nothing wrong with being deaf and we are just as capable of learning.

AliciaM · 10-16-2009, 09:15 PM

Quote:

Originally Posted by deafdude1

[url=http://audismfreeamerica.blogspot.com/2009/04/afa-hearing-mother-of-deaf-child-speaks.html]
My comments: CI is experimental and not FDA approved.

Um CI is FDA Approved and no parent should have to deal with a doctor pushing anything and being so rude HOWEVER I am looking into CI because my loss is progressive am i stupid to do so DD? Just because u are so anti ci doesnt mean u can make shit up...CI is FDA approved maybe you should learn to read more thoroughly

souggy · 10-16-2009, 09:21 PM

Quote:

Originally Posted by AliciaM

Um CI is FDA Approved and no parent should have to deal with a doctor pushing anything and being so rude HOWEVER I am looking into CI because my loss is progressive am i stupid to do so DD? Just because u are so anti ci doesnt mean u can make shit up...CI is FDA approved maybe you should learn to read more thoroughly

Um... deafdude1 meant that with the hearing loss the daughter has, it would not be approved.

You need 90dB losses in order to qualify for CI under the FDA guideline. Anything above 90dB is not FDA-approved.

Pinky · 10-16-2009, 09:21 PM

Quote:

Originally Posted by AliciaM

Um CI is FDA Approved and no parent should have to deal with a doctor pushing anything and being so rude HOWEVER I am looking into CI because my loss is progressive am i stupid to do so DD? Just because u are so anti ci doesnt mean u can make shit up...CI is FDA approved maybe you should learn to read more thoroughly

I agree with you!

AliciaM · 10-16-2009, 09:31 PM

he should be more clear then and it isn't a secret that deafdude doesn't like CI even though not that long ago he himself was interested in it for himself

Pinky · 10-16-2009, 09:54 PM

I agree with alicia! He is in denial being deaf. He rather call hearing impaired himself. He don't know sign language. He must be OCD.

shel90 · 10-16-2009, 10:04 PM

Good for the mother to stick to her guns! My deaf friend went thru that with the CI doctors for her two deaf sons. They told her that she would be doing them an inservice if they don't get implanted. She told them that they had no right to make comments like that and that they crossed the line. Doctors like them shouldn't be practicing medicine.

JennyB · 10-16-2009, 10:28 PM

I had a CI doc tell me (As an adult) that by not getting a CI I was ruining my life and I couldn't even say I had a quality of life. I should have kicked him in the balls.

set2 · 10-16-2009, 10:32 PM

First off, CI surgery is NOT Brain surgery. Secondly, we do not know what the daughters unaided thresholds are so it is only an assumtion that the daughter has unaided thresholds below 90 db.

I think it is great the Mom is so accepting of her daughter being Deaf and wants to make sure she gets the education she deserves. I just hope the Mom will make sure to
see how the daughter feels about getting an implant as time goes on.

Good Posts Alicia and Shel!

AliciaM · 10-16-2009, 10:43 PM

thanks set2

Just to clarify I do not agree with the drs forcing the CI on the daughter and saying ASL doesn't matter etc. That's wrong... every avenue should be explored

full box

Lissa · 10-17-2009, 03:42 PM

I think the mother should ignore the doctors and implant the child when the child can not longer benefit from HA's or if her HL progresses very fast overnight!

shel90 · 10-17-2009, 04:22 PM

Thanks set2.

deafdyke · 10-17-2009, 08:52 PM

Quote:

I think the mother should ignore the doctors and implant the child when the child can not longer benefit from HA's or if her HL progresses very fast overnight!

AMEN!!!!!!!!!!!!!!!!!!!
Nothing wrong with the implant for folks who really obviously qualify for it. But lately with the decreased qualifications, it seems like they are REALLY pushing for everyone and anyone to get it!

faire_jour · 10-19-2009, 11:57 AM

Quote:

Originally Posted by DeafLissa90

I think the mother should ignore the doctors and implant the child when the child can not longer benefit from HA's or if her HL progresses very fast overnight!

I believe it is important for a child to have the best hearing they can have. If she has a progressive loss that has become severe, then why not implant? Why wait for it to become profound? If you would implant at profound, implant as early as is appropriate so that the child's brain can learn to interpret the signals as soon as possible, and so that that she has the best hearing possible for as long as possible.

faire_jour · 10-19-2009, 11:59 AM

Quote:

Originally Posted by deafdyke

AMEN!!!!!!!!!!!!!!!!!!!
Nothing wrong with the implant for folks who really obviously qualify for it. But lately with the decreased qualifications, it seems like they are REALLY pushing for everyone and anyone to get it!

They are pushing for it for all the people it would benefit. They have done research, and the FDA has changed the criteria to match the findings. A person with a severe loss performs better with a CI than with hearing aids, that is why they are now candidates.

Hask12 · 10-19-2009, 01:02 PM

Congrats to Pinky!!

deafdyke · 10-19-2009, 10:49 PM

Quote:

If she has a progressive loss that has become severe, then why not implant? Why wait for it to become profound? If you would implant at profound, implant as early as is appropriate so that the child's brain can learn to interpret the signals as soon as possible, and so that that she has the best hearing possible for as long as possible.

Because they're not starting from scratch. They will remember how to interpret sound. They're already getting pretty good input.

Quote:

They are pushing for it for all the people it would benefit. They have done research, and the FDA has changed the criteria to match the findings. A person with a severe loss performs better with a CI than with hearing aids, that is why they are now candidates

You cannot generalize. I'm sorry but you can't. Yes, someone with poor speech perception and a severe loss may hear better with CI........but there are still TONS of people with severe losses who are hoh with hearing aids!

Pinky · 10-20-2009, 09:52 PM

Quote:

Originally Posted by set2

First off, CI surgery is NOT Brain surgery. Secondly, we do not know what the daughters unaided thresholds are so it is only an assumtion that the daughter has unaided thresholds below 90 db.

I think it is great the Mom is so accepting of her daughter being Deaf and wants to make sure she gets the education she deserves. I just hope the Mom will make sure to
see how the daughter feels about getting an implant as time goes on.

Good Posts Alicia and Shel!

Exactly! The deaf people thought CI is surgery on brain. It's not true! The CI surgery on behind the ear to connect the above the ear canal to cochlea. The skin cut is 1 to 2 inches. It's not bad at all.

faire_jour · 10-22-2009, 02:08 PM

Quote:

Originally Posted by deafdyke

Because they're not starting from scratch. They will remember how to interpret sound. They're already getting pretty good input.

You cannot generalize. I'm sorry but you can't. Yes, someone with poor speech perception and a severe loss may hear better with CI........but there are still TONS of people with severe losses who are hoh with hearing aids!

They are starting from scratch when talking about interpreting the signal from a CI. Miss Kat had tons of hearing with her aids but when she was activated the sound was so different that she didn't even label it as "hearing". When we asked her if she heard a sound (something she had obviously heard and reacted to) she said "No" because she didn't realize that it was "hearing".

The writer never speaks to speech perception, only to DB, but if her daughter is a CI candidate, she obviously scores within a certain range, regardless of tones heard in the booth.

rick48 · 10-23-2009, 12:23 AM

What I found interesting is that this mother keeps referring to the cochlear implant as brain surgery, which it is not. Thus her credibility is at issue for either she is uninformed and made the cochlear implant decision for her child without even doing the basic research or she knows it is not brain surgery but is intentionally misrepresenting and lying in order to push an agenda. She also is oblivious to the fact that the cochlear implant, Deaf culture and ASL are not mutually exclusive as many on this forum are proof of that fact. She did not have to choose one or the other.

deafdyke · 10-23-2009, 12:39 AM

Quote:

They are starting from scratch when talking about interpreting the signal from a CI.

That's very true. The sound from a CI is different from "regular hearing" or hearing aid hearing..........but on the other hand the hearing from a hearing aid would give them more of a vague idea of what sounds were. They have a base for processing sound, whereas someone with no hearing with aids wouldn't.

Quote:

The writer never speaks to speech perception, only to DB, but if her daughter is a CI candidate, she obviously scores within a certain range, regardless of tones heard in the booth.

Good point. I know someone who only has a moderate loss, but her speech perception is very low. On the other hand, with the way that some doctors and audis are pushing it, it wouldn't suprise me if her daughter's speech perception was bad without aids, but decent with hearing aids. I mean.....I was at an oral deaf exhibit hall this past week. One of their criteria was " does your kid have trouble hearing in noise? " Ummmm almost everyone (including unilateral losses) have trouble hearing in noise.

souggy · 10-23-2009, 12:58 AM

I wouldn't say it's Deaf or anti-CI propaganda. Even in the hearing population, anything that is near the head is considered as "brain surgery" for some reason.

shel90 · 10-23-2009, 09:33 PM

Quote:

Originally Posted by souggy

I wouldn't say it's Deaf or anti-CI propaganda. Even in the hearing population, anything that is near the head is considered as "brain surgery" for some reason.

Never thought of it that way..interesting.

souggy · 10-23-2009, 09:43 PM

Quote:

Originally Posted by shel90

Never thought of it that way..interesting.

Yeah, not sure if it's a gross overgeneralization or an over-reaction.

I remember when I got knee surgery, one of my aunts were alll "he's going to get an amputation!"

shel90 · 10-23-2009, 09:44 PM

Quote:

Originally Posted by souggy

Yeah, not sure if it's a gross overgeneralization or an over-reaction.

I remember when I got knee surgery, one of my aunts were alll "he's going to get an amputation!"

So, nobody can accuse people of being "D"eaf or anti-CI if they say CI surgery is brain surgery.

souggy · 10-23-2009, 09:46 PM

Quote:

Originally Posted by shel90

So, nobody can accuse people of being "D"eaf or anti-CI if they say CI surgery is brain surgery.

Just plain stupidity. :p

Everyone's affected by it.

shel90 · 10-23-2009, 09:47 PM

Quote:

Originally Posted by souggy

Just plain stupidity. :p

Everyone's affected by it.

Everyone? Even me? Just kidding.

nope · 10-24-2009, 12:24 AM

Quote:

Originally Posted by souggy

I wouldn't say it's Deaf or anti-CI propaganda. Even in the hearing population, anything that is near the head is considered as "brain surgery" for some reason.

I agree. It's the exact same thing I run into with people who have normal stomach viruses, indigestion, morning sickness, or the flu saying they have 'food poisoning.' Honestly? Food poisoning is serious! Just because you drank half a keg of beer on an empty stomach, ate three pounds of taco bell at 4 in the morning, and spent the next morning ill in the bathroom DOES NOT mean you got food poisoning.

rick48 · 10-24-2009, 09:32 AM

Of course there is always going to be some portion of the population who are too stupid or ignorant that they would label anything having to do with the head as brain surgery, however the decades long references to cochlear implants as brain surgery by those who oppose cochlear implants are too numerous to awkwardly dismiss as being uninformed. Their specific reference to brain surgery is by design not happenstance.

This is a scare tactic that has been used over and over again and thankfully unsuccessfully.

Daredevel7 · 10-24-2009, 10:01 AM

Quote:

Originally Posted by souggy

I wouldn't say it's Deaf or anti-CI propaganda. Even in the hearing population, anything that is near the head is considered as "brain surgery" for some reason.

So I guess pulling out widsom teeth is brain surgery?

10-16-2009, 09:02 PM	#1 (permalink)
deafdude1 Getting stem cells ~2011! Join Date: Feb 2009 Posts: 1,051 Blog Entries: 1	Docs want to force CI on her! She benefits great from HA! AUDISM FREE AMERICA: AFA: Hearing Mother of Deaf child speaks out! Also, because I have made the decision to NOT implant Lily with a Cochlear Implant, The doctors have made me feel like I am committing child abuse. They have told me so,I am abusing my child because I opted NOT to have her implanted with a cochlear implant. I am happy to say we don’t see those doctors anymore. Here is my issue with the Cochlear Implants and Lily. She is responding at 30 dbs with her hearing aides she is maximizing on her residual hearing but yet they want to implant her. Lily has a medical condition that will one day make her profoundly Deaf so they want to implant her now under that assumption. They are so eager to implant her… yet I resist this major brain operation…. This intrusive, invasive, brain surgery… I cherish my child as a whole being… I chose ASL instead. My daughter is bright, she’s brilliant, she’s capable of so much…. But those who don’t recognize ASL while never know. My comments: I am very proud of the parents for resisting the insane CI hype! For the amount of residual hearing she has, CI is experimental and not FDA approved. You need 90db HL across the audiogram and her loss is much less than that. It's no surprise she benefits from HAs as much as others do with CI. When Lily's hearing gets down to 90db or worse, then the decision for CI(or some other technology) can be decided by Lily herself as she will be much older by then. The doctors want to make lots of money implanting as many deaf people with CI. It's disgusting that greed has clouded their judgement. Many who get CI could have gotten plenty of benefits from HAs as is. I had a severe-profound HL since birth and I got plenty of benefits from HAs back then and there wasn't even digital HAs! The good thing is there wasn't any complicated programming so no worries about improperly programmed HAs, such as insufficient gain or too much SPL or some useless feature that gets in the way. My old analog HAs were great out of the box, I simply turned the volume dial as high as it would go without feedback. Today's digitals, if programmed properly would give another 15db more gain than the analogs I wore as a kid. Any deaf children my brother, sister and cousins have, ill recommend an experienced audiologist who will fit the best HAs programmed to maximum gains so the deaf child can get access to sounds at 30db or better as long as the residual hearing does not exceed 100db HL. Ill explain to the parents that I did great with HAs and they should also do great with proper HAs and proper speech training. Ill also explain the importance of lip reading that can let the child understand most speech. Any doc who says it's child abuse is crazy and should be avoided like the plague! Those docs are terrible audists! There is nothing wrong with being deaf and we are just as capable of learning. __________________

10-16-2009, 09:31 PM	#5 (permalink)
AliciaM Midge Join Date: May 2006 Location: Ottawa, ON Posts: 1,603	he should be more clear then and it isn't a secret that deafdude doesn't like CI even though not that long ago he himself was interested in it for himself __________________ Alicia Phonak versatas Severe loss deaf Ears are cheap. It's what's between the ears that counts

10-16-2009, 09:54 PM	#6 (permalink)
Pinky I'm proud to have CI!!!! Join Date: Apr 2008 Posts: 5,441	I agree with alicia! He is in denial being deaf. He rather call hearing impaired himself. He don't know sign language. He must be OCD. __________________ I'm expecting! It's a BOY!!!!! LEFT: Implanted: 6/12/09 Activated: 7/7/09 Freedom

10-16-2009, 10:04 PM	#7 (permalink)
shel90 In a pink and black world Join Date: Sep 2006 Location: In the land of the free Posts: 24,014 Blog Entries: 3	Good for the mother to stick to her guns! My deaf friend went thru that with the CI doctors for her two deaf sons. They told her that she would be doing them an inservice if they don't get implanted. She told them that they had no right to make comments like that and that they crossed the line. Doctors like them shouldn't be practicing medicine. __________________ Shel~ "A child educated only at school is an uneducated child." -George Santayana

10-16-2009, 10:28 PM	#8 (permalink)
JennyB Deaf Activist! Join Date: Jan 2008 Location: Toronto, Ontario Posts: 784	I had a CI doc tell me (As an adult) that by not getting a CI I was ruining my life and I couldn't even say I had a quality of life. I should have kicked him in the balls. __________________ Queer, Deaf, radical disability theorist, feminist, activist, advocate, and linguist. Fear me! Jenny~B http://journysofadeafgirl.blogspot.com/

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10-16-2009, 10:32 PM	#9 (permalink)
set2 Registered User Join Date: Oct 2006 Posts: 198	First off, CI surgery is NOT Brain surgery. Secondly, we do not know what the daughters unaided thresholds are so it is only an assumtion that the daughter has unaided thresholds below 90 db. I think it is great the Mom is so accepting of her daughter being Deaf and wants to make sure she gets the education she deserves. I just hope the Mom will make sure to see how the daughter feels about getting an implant as time goes on. Good Posts Alicia and Shel!

10-16-2009, 10:43 PM	#10 (permalink)
AliciaM Midge Join Date: May 2006 Location: Ottawa, ON Posts: 1,603	thanks set2 Just to clarify I do not agree with the drs forcing the CI on the daughter and saying ASL doesn't matter etc. That's wrong... every avenue should be explored full box __________________ Alicia Phonak versatas Severe loss deaf Ears are cheap. It's what's between the ears that counts

10-17-2009, 03:42 PM	#11 (permalink)
Lissa Just me....Lissa Join Date: Dec 2007 Posts: 3,093 Blog Entries: 3	I think the mother should ignore the doctors and implant the child when the child can not longer benefit from HA's or if her HL progresses very fast overnight! __________________ Left Ear Nucleus Freedom Implanted-October 25th 2000 Activation-November 28th 2000

10-17-2009, 04:22 PM	#12 (permalink)
shel90 In a pink and black world Join Date: Sep 2006 Location: In the land of the free Posts: 24,014 Blog Entries: 3	Thanks set2. __________________ Shel~ "A child educated only at school is an uneducated child." -George Santayana

10-19-2009, 01:02 PM	#16 (permalink)
Hask12 Registered User Join Date: Mar 2009 Location: Ohio Posts: 72	Congrats to Pinky!!

10-23-2009, 12:23 AM	#20 (permalink)
rick48 Registered User Join Date: Oct 2006 Posts: 1,421	What I found interesting is that this mother keeps referring to the cochlear implant as brain surgery, which it is not. Thus her credibility is at issue for either she is uninformed and made the cochlear implant decision for her child without even doing the basic research or she knows it is not brain surgery but is intentionally misrepresenting and lying in order to push an agenda. She also is oblivious to the fact that the cochlear implant, Deaf culture and ASL are not mutually exclusive as many on this forum are proof of that fact. She did not have to choose one or the other. __________________ Beware of Sham Wow immitators!

10-23-2009, 12:58 AM	#22 (permalink)
souggy Ace Attorney Join Date: Jul 2009 Location: Victoria, BC Posts: 2,364	I wouldn't say it's Deaf or anti-CI propaganda. Even in the hearing population, anything that is near the head is considered as "brain surgery" for some reason. __________________ Souggy's Blog Warning! Contains skewed comments & inane ramblings. May cause spontaneous human combustion

10-24-2009, 09:32 AM	#29 (permalink)
rick48 Registered User Join Date: Oct 2006 Posts: 1,421	Of course there is always going to be some portion of the population who are too stupid or ignorant that they would label anything having to do with the head as brain surgery, however the decades long references to cochlear implants as brain surgery by those who oppose cochlear implants are too numerous to awkwardly dismiss as being uninformed. Their specific reference to brain surgery is by design not happenstance. This is a scare tactic that has been used over and over again and thankfully unsuccessfully. __________________ Beware of Sham Wow immitators!

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