When a Child Says No

Cloggy said:
"Deaf People Can Do Anything Including Hear!" C
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Deaf People Can Do Anything Including Hear with Devices.
 
jillio said:
:h5:

Good one, shel!
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:ty:

I disagree with Cloggy that Deaf people can do anything including hear...that is just too vague..have to be more specific than that. :giggle:
 
shel90 said:
:ty:

I disagree with Cloggy that Deaf people can do anything including hear...that is just too vague..have to be more specific than that. :giggle:
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Yep, my dog can hear--but can he understand language? And, no I'm not comparing deaf people to dogs (before someone twists my words), I'm comparing situations.:giggle:
 
This analogy might be way off, but for kids who are underage and wish to change their sex surgically, they cannot get it done until the age of consent (18 in some states, 21 in others). I think this is the way it should be for CIs because it is not automatic after the surgery that you can see the change. It takes time. Those that change their sex surgically still have to take hormone pills as well as take speech therapy to change the pitch of their voices to sound more manly or more womanly. Some have to learn how to put make up on or learn to shave once they start growing facial hair.

CI is the same way. The change does not happen immediately after the surgery. There is alot of work that has to be done such as speech therapy, emotional support, sound recognition sessions, and having to take anti-immune pills for a short while so that the body does not develop an infection against the CI device to 'rid the body of it', and even then there is no guarantee of success.

For the deaf, getting a CI is like obtaining a whole new sense. Someone here used a great analogy for it. For someone who is hearing that obtains a new sense such as taps on the shoulder, everyone else who has these taps tells them how great these taps are. Once the taps are installed the person has this new sensation, they have to figure out what the taps mean (environmental sound recognition) and what individual taps mean (speech recognition). They have to endure endless hours of 'tap therapy' where these taps are stimulated over and over and eventually it causes sensory overload, headaches, and fatigue. But yet everyone around them keeps telling this person how good and wonderful these taps are. For some people they adjust to the taps very well, for others it is a great annoyance so they take off the tap device (the CI) and 'turn the taps off' when they do, but they are still fitted with an internal tap recognition device (the interal part of the CI) that leaves a lump on their shoulder that still sometimes cuases shoulder pain. Thats the analogy.

For someone to get a new sense is life altering just the way the sex change operation is life changing. You have to readjust your whole lifestyle to meet these new changes. It is not easy, and its a long road to success for those that wish to obtain an oral lifestyle. For those that refuse it, it is going to be one very long drawn out battle until the child comes to the age of consent and moves out of the parents house on bad terms.
 
Raykat said:
Why would you say that the deaf are emotionally damaged due to having to cope with oral only aproaches......do you have any experiences to base this statement on???????
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Yes, plenty!!!

Experience 1: My own case: I am lacking in BSL. I have had mental health problems. Anorexia nervosia, self harm, depression.

Experience 2: the deaf kinds I was with from partial hearing unit. My friend T is 'oral success'. She can speak very well but her understanding is poor. Even though T is intelligent. Last I heard of her was in newspaper report that she got involved in prostitution. She became pregnant and had to give up the baby as the social services wouldn't let her keep it. Another of the orally taught deaf (HOH in his case) got moved to another school for malajusted children.

Experience 3: I had a stay in Preston which has a unit for deaf with mental health problems. There are many oral falures there.
 
dreama said:
Yes, plenty!!!

Experience 1: My own case: I am lacking in BSL. I have had mental health problems. Anorexia nervosia, self harm, depression.

Experience 2: the deaf kinds I was with from partial hearing unit. My friend T is 'oral success'. She can speak very well but her understanding is poor. Even though T is intelligent. Last I heard of her was in newspaper report that she got involved in prostitution. She became pregnant and had to give up the baby as the social services wouldn't let her keep it. Another of the orally taught deaf (HOH in his case) got moved to another school for malajusted children.

Experience 3: I had a stay in Preston which has a unit for deaf with mental health problems. There are many oral falures there.
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Wow that's awful!

Are u doing better now?
I am so glad that I turned out ok and had a great therapist who made me see that it was my desire to be hearing was hurting me and helped me to accept my deafness.

That's what I am concerned for this child who obviously has been fine as who she is.
 
shel90 said:
Wow that's awful!

Are u doing better now?
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:ty:

I am better then was. To me life is like a game of snakes and ladders. I rise. I even manage to get volentary work. Then I go off the deep end. Mental health issues tend to lose you jobs like nothing else will. Even when you get better, your reputation is against you so that's something else difficult to deal with.
 
I didn;t read the whole thing, so if this had been said already, I apologize.

I am quite surprised, I would've thought that the social worker would see that the girl does not want to be implanted, and deny the surgery for her even if her parents want to.

I looked up in Toronto Hospital for Sick kids, where alot of children go for ci surgery there, and this is what I got...

Criteria for Implantation You are here Program Information / Criteria for Implantation


Age

* 0 to 18 years
* If deafness is congenital or prelingual, younger children seem to progress faster and benefit more than older children
* If deafness is postlingual (over age 5), children of any age can benefit, if implanted shortly after onset of profound hearing loss

Audiological criteria

* Severe to profound bilateral sensorineural hearing loss
* Limited benefit from hearing aids despite appropriate training and consistent hearing aid use

Speech and Language Level

* The gap between spoken language age and chronological age will need to be be assessed (as this has an impact on the expectations for speech-language success with the implant)

Educational

* The child must have access to a school and therapy program with a strong auditory emphasis

Psycho-social

* The family must be willing and able to take part in extensive pre- and post- implant assessment and therapy
* Family must have realistic expectations of benefit
* Child must understand process and provide consent (if possible and appropriate)

Medical/Surgical Criteria*

* Deafness can not be due to lesions of the acoustic nerve or central auditory pathways
* Deafness cannot be due to an absence of cochlear development
* Cochlear ossification that prevents electrode insertion may affect your child's candidacy

* medical/surgical contraindications are determined by the surgeon


Assessment Process

* Audiologist

Several audiology appointments are usually needed in order to complete a battery of tests, including:

° pure tone air and bone conduction testing

° electroacoustic analysis of hearing aids

° aided soundfield testing

° otoacoustic emissions

° evoked auditory brainstem response

° battery of speech perception tests (including the ESP, TAC, WIPI, etc...)

* Speech Language Pathologist

The speech language pathologist will assess your child's language and communication abilities through a number of tests.

* Auditory Verbal Therapist/Habilitationist

An auditory verbal therapist works with the hearing-impaired child and their family. During ongoing therapy sessions, the child learns to listen with their hearing aid or cochlear implant in order to develop communication skills. Your audiologist can provide you with more information on how to find an auditory verbal therapist during your assessment process. (See also our links page.)

* Surgeon

The surgeon will meet with you to answer your questions about the surgical procedure. See the surgery page for more information about the operation.

* Social worker

The social worker may meet with the family when the child's candidacy is being considered. It is an opportunity to discuss expectations, family support and rehabilitation needs. At any time, before or after implantation, a team member or a member of the family may request social work involvement to provide counseling for the family.

* Other appointments

Your child will also have an appointment for a CT scan (which is like an X-ray) and may have appointments with a nurse or other healthcare professionals during the assessment process. At present, we are also recommending that all of our patients receive vaccination for meningitis prior to implantation.

Once the assessment process is complete, the Cochlear Implant Program team will meet to discuss whether or not your child is a candidate for cochlear implantation. If your child has been approved, a time frame for surgery will be provided. If a cochlear implant is not recommended for your child, then other options will be discussed.

PLEASE NOTE: You or your child may withdraw from the assessment process at any time.

But this is from Toronto Hospital in Canada, so it may be different otherwise...

When I was applying to be a candiate, I had to go through several of appts to see. I also remember havingto see a social worker or psychologist to see if i was mentally fit. They wanted to make sure I really wanted to get it and make sure I don't have high expectation. As I have bipolar disorder so they were more concern that I would be upset or depressed if the CI did not work. (probably didn't want me to go off and kill myself or something like that lol)

But if the 10 year old girl doesn't want to get it, she shouldn't have to. My best friend's parent wanted her to have ci, and forced her to go to appts for candiate of ci etc, but she was 12 at the time, and when she was accepted as a candiate, she turned 13, and she still refused, the doctor let her go cuz she was 13 and was too old for her parent to decide. They should lower that age to 10 then the girl wouldn't have to go through this.

The Hospital for Sick Children - Assessment Process
 
darkangel8603 said:
I didn;t read the whole thing, so if this had been said already, I apologize.

I am quite surprised, I would've thought that the social worker would see that the girl does not want to be implanted, and deny the surgery for her even if her parents want to.

I looked up in Toronto Hospital for Sick kids, where alot of children go for ci surgery there, and this is what I got...

Criteria for Implantation You are here Program Information / Criteria for Implantation


Age

* 0 to 18 years
* If deafness is congenital or prelingual, younger children seem to progress faster and benefit more than older children
* If deafness is postlingual (over age 5), children of any age can benefit, if implanted shortly after onset of profound hearing loss

Audiological criteria

* Severe to profound bilateral sensorineural hearing loss
* Limited benefit from hearing aids despite appropriate training and consistent hearing aid use

Speech and Language Level

* The gap between spoken language age and chronological age will need to be be assessed (as this has an impact on the expectations for speech-language success with the implant)

Educational

* The child must have access to a school and therapy program with a strong auditory emphasis

Psycho-social

* The family must be willing and able to take part in extensive pre- and post- implant assessment and therapy
* Family must have realistic expectations of benefit
* Child must understand process and provide consent (if possible and appropriate)

Medical/Surgical Criteria*

* Deafness can not be due to lesions of the acoustic nerve or central auditory pathways
* Deafness cannot be due to an absence of cochlear development
* Cochlear ossification that prevents electrode insertion may affect your child's candidacy

* medical/surgical contraindications are determined by the surgeon


Assessment Process

* Audiologist

Several audiology appointments are usually needed in order to complete a battery of tests, including:

° pure tone air and bone conduction testing

° electroacoustic analysis of hearing aids

° aided soundfield testing

° otoacoustic emissions

° evoked auditory brainstem response

° battery of speech perception tests (including the ESP, TAC, WIPI, etc...)

* Speech Language Pathologist

The speech language pathologist will assess your child's language and communication abilities through a number of tests.

* Auditory Verbal Therapist/Habilitationist

An auditory verbal therapist works with the hearing-impaired child and their family. During ongoing therapy sessions, the child learns to listen with their hearing aid or cochlear implant in order to develop communication skills. Your audiologist can provide you with more information on how to find an auditory verbal therapist during your assessment process. (See also our links page.)

* Surgeon

The surgeon will meet with you to answer your questions about the surgical procedure. See the surgery page for more information about the operation.

* Social worker

The social worker may meet with the family when the child's candidacy is being considered. It is an opportunity to discuss expectations, family support and rehabilitation needs. At any time, before or after implantation, a team member or a member of the family may request social work involvement to provide counseling for the family.

* Other appointments

Your child will also have an appointment for a CT scan (which is like an X-ray) and may have appointments with a nurse or other healthcare professionals during the assessment process. At present, we are also recommending that all of our patients receive vaccination for meningitis prior to implantation.

Once the assessment process is complete, the Cochlear Implant Program team will meet to discuss whether or not your child is a candidate for cochlear implantation. If your child has been approved, a time frame for surgery will be provided. If a cochlear implant is not recommended for your child, then other options will be discussed.

PLEASE NOTE: You or your child may withdraw from the assessment process at any time.

But this is from Toronto Hospital in Canada, so it may be different otherwise...

When I was applying to be a candiate, I had to go through several of appts to see. I also remember havingto see a social worker or psychologist to see if i was mentally fit. They wanted to make sure I really wanted to get it and make sure I don't have high expectation. As I have bipolar disorder so they were more concern that I would be upset or depressed if the CI did not work. (probably didn't want me to go off and kill myself or something like that lol)

But if the 10 year old girl doesn't want to get it, she shouldn't have to. My best friend's parent wanted her to have ci, and forced her to go to appts for candiate of ci etc, but she was 12 at the time, and when she was accepted as a candiate, she turned 13, and she still refused, the doctor let her go cuz she was 13 and was too old for her parent to decide. They should lower that age to 10 then the girl wouldn't have to go through this.

The Hospital for Sick Children - Assessment Process
Click to expand...

Thanks for the info...no wonder the first CI center didnt qualify her. Nice to learn something new. I dont know if she got qualified or what but the parents want her to get a CI and she says no. The last I heard from my friend about this situation was when I started this thread. Maybe things have changed but it is nice to learn from everyone about if this situation should ever occur again.
 
dreama said:
Yes, plenty!!!

Experience 1: My own case: I am lacking in BSL. I have had mental health problems. Anorexia nervosia, self harm, depression.

Experience 2: the deaf kinds I was with from partial hearing unit. My friend T is 'oral success'. She can speak very well but her understanding is poor. Even though T is intelligent. Last I heard of her was in newspaper report that she got involved in prostitution. She became pregnant and had to give up the baby as the social services wouldn't let her keep it. Another of the orally taught deaf (HOH in his case) got moved to another school for malajusted children.

Experience 3: I had a stay in Preston which has a unit for deaf with mental health problems. There are many oral falures there.
Click to expand...


Dreama, I am very sorry to hear you have had such a hard time of it, you are deaf and blind, is that right? just going by your signature. I should imagine this would just about double the amount of work you woudl have to do, the fustrations, setbacks etc. I do not know any blind/deaf people so excuse my ignorance of this.

I have heard before that the rate of suicide amongst the deaf is higher than general population.

I can only count my blessings that I have coped well and live a normal life.
 
rick48 said:
Raywyn,

My daughter is 20 and has had her ci since 89. She has never said that she wishes we had never gotten an implant. She just views it as part of who she is really like her hair color, LOL! Seriously, though she has toldl my wife that she is very appreciative of the fact that we chose the ci for her.
Rick
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Thanks Rick, I still have not got a satisfsctory answer to my question regarding what a parent would say to a child who they had refused implanting to if that child grew up and asked "why not".......I guess no one wants to face that possibility. Its like not telling a child they are adopted then years later old aunty forgets the plot and spills the beans, peed off kids all round....lol

I am going to say something here that may get me bashed or worse, put before the firing squad.........is there any research or whatever regarding the effect of IQ on a persons abiltity to cope with deafness, or any sort of disability for that matter? I could be way off base here but just maybe, the higher the IQ the better able a person is to reason things out, put it in perspective and get on with a normal life.
 
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Dixie said:
growing facial haiThis analogy might be way off, but for kids who are underage and wish to change their sex surgically, they cannot get it done until the age of consent (18 in some states, 21 in others). I think this is the way it should be for CIs because it is not automatic after the surgery that you can see the change. It takes time. Those that change their sex surgically still have to take hormone pills as well as take speech therapy to change the pitch of their voices to sound more manly or more womanly. Some have to learn how to put make up on or learn to shave once they start r.

CI is the same way. The change does not happen immediately after the surgery. There is alot of work that has to be done such as speech therapy, emotional support, sound recognition sessions, and having to take anti-immune pills for a short while so that the body does not develop an infection against the CI device to 'rid the body of it', and even then there is no guarantee of success.

For the deaf, getting a CI is like obtaining a whole new sense. Someone here used a great analogy for it. For someone who is hearing that obtains a new sense such as taps on the shoulder, everyone else who has these taps tells them how great these taps are. Once the taps are installed the person has this new sensation, they have to figure out what the taps mean (environmental sound recognition) and what individual taps mean (speech recognition). They have to endure endless hours of 'tap therapy' where these taps are stimulated over and over and eventually it causes sensory overload, headaches, and fatigue. But yet everyone around them keeps telling this person how good and wonderful these taps are. For some people they adjust to the taps very well, for others it is a great annoyance so they take off the tap device (the CI) and 'turn the taps off' when they do, but they are still fitted with an internal tap recognition device (the interal part of the CI) that leaves a lump on their shoulder that still sometimes cuases shoulder pain. Thats the analogy.

For someone to get a new sense is life altering just the way the sex change operation is life changing. You have to readjust your whole lifestyle to meet these new changes. It is not easy, and its a long road to success for those that wish to obtain an oral lifestyle. For those that refuse it, it is going to be one very long drawn out battle until the child comes to the age of consent and moves out of the parents house on bad terms.
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There is really no comparison between sex change and CI, everyone knows that the sooner a child hears the quicker and better speach developement will be, waiting until 18 or 20 means the child will probably never learn to speak.

I do have some transexual friends so I know that side of the issue too.
 
Raykat said:
There is really no comparison between sex change and CI, everyone knows that the sooner a child hears the quicker and better speach developement will be, waiting until 18 or 20 means the child will probably never learn to speak.

I do have some transexual friends so I know that side of the issue too.
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I respect your view and your opinion.

My opinion or my view is this...

For this girl, she can speak..just through her hands so why change that if she is happy as who she is? My view has always been about language development, knowledge and the abilitiy to share conceptual thoughts. If the child can do that with sign language, that is just as great as a child doing that with spoken language. Why does having speech ensure that people will have a better life? It didnt give me the good life that it was supposed to.

My brother cant speak to save his life but he is leading a successful and happy life. He is going to grad school to get his Master's. He has done fine without speech all his life. In fact, he had less scars than I do growing up even though I am the one with good speech skills not him. Ironic, huh?
 
Dixie said:
This analogy might be way off, but for kids who are underage and wish to change their sex surgically, they cannot get it done until the age of consent (18 in some states, 21 in others). I think this is the way it should be for CIs because it is not automatic after the surgery that you can see the change. It takes time. Those that change their sex surgically still have to take hormone pills as well as take speech therapy to change the pitch of their voices to sound more manly or more womanly. Some have to learn how to put make up on or learn to shave once they start growing facial hair.

CI is the same way. The change does not happen immediately after the surgery. There is alot of work that has to be done such as speech therapy, emotional support, sound recognition sessions, and having to take anti-immune pills for a short while so that the body does not develop an infection against the CI device to 'rid the body of it', and even then there is no guarantee of success.

For the deaf, getting a CI is like obtaining a whole new sense. Someone here used a great analogy for it. For someone who is hearing that obtains a new sense such as taps on the shoulder, everyone else who has these taps tells them how great these taps are. Once the taps are installed the person has this new sensation, they have to figure out what the taps mean (environmental sound recognition) and what individual taps mean (speech recognition). They have to endure endless hours of 'tap therapy' where these taps are stimulated over and over and eventually it causes sensory overload, headaches, and fatigue. But yet everyone around them keeps telling this person how good and wonderful these taps are. For some people they adjust to the taps very well, for others it is a great annoyance so they take off the tap device (the CI) and 'turn the taps off' when they do, but they are still fitted with an internal tap recognition device (the interal part of the CI) that leaves a lump on their shoulder that still sometimes cuases shoulder pain. Thats the analogy.

For someone to get a new sense is life altering just the way the sex change operation is life changing. You have to readjust your whole lifestyle to meet these new changes. It is not easy, and its a long road to success for those that wish to obtain an oral lifestyle. For those that refuse it, it is going to be one very long drawn out battle until the child comes to the age of consent and moves out of the parents house on bad terms.
Click to expand...

Good analogy...that is what I am concerned about with this girl. My brother hates hearing sounds and he refuses to wear HAs. He says that they give him blinding headaches. I just hope that wont be the case for this girl.
 
I haven't been here is sometime. Hello to old friends. For those of you who do not no me, I'm hearing and my son is deaf. The child should decide. I came in here to show my deaf bf the site so hopefully he will join. We both use tagdeaf.
Hugs to my friends.
 
Raykat said:
Dreama, I am very sorry to hear you have had such a hard time of it, you are deaf and blind, is that right?
Click to expand...

:ty:

Yes I'm deafblind. I wasn't born deafblind though. I was born HOH (40db), with underactive thyroid and mild Asperger syndrome. I didn't become blind until I was 17. I started self harming when I was 13 so it started before my sight loss although that didn't help matters. Deafblindness, once one learns how to cope with it, isn't as bad as people think it is really. Depression is worse.
 
What was I getting at with CI and transgender is that they are both life changing events. Yes the surgical procedure is overnight but the actual transformation from one to the other is NOT overnight. I knew the analogy would be a bit out there but thats what I came up with. Not knocking those that are transgender though.

I watched a show on NBC the other night on transgender chidren and their are two sides to this debate. One group advocates changing the sex at an early age so the child learns to accept themselves as one or the other and not a boy or girl stuck in the wrong body. Alot of these kids have emotional problems as it is because their parents do not accept them for what they are. There are deaf kids out there whose parents do not accept them for what they are and push them for a oral lifestyle and make big fuss of the child being deaf which is asking for trouble in the long run.

Growing up my parents always made a big fuss over my deafness/HH, and they pushed me for an oral lifestyle. They would get mad if I did not hear them and often it made me feel very insecure about myself. Even to this day I have self confidence problems.

I just more parents would accept the children for what they are and not push them to be something they are not. If the child is 10 or 11 years old and wants the CI after much thought talk and debate then let the child get the CI, but if she is flat out refusing it and wants to maintain a signing lifestyle then the parents need to accept that and quit making up stupid exscuses to push their child into being something she is not and has no desire to be.
 
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