When a Child Says No

[shel90]

My opinion based on what you have described is that she is only likely to get limited benefit from a CI anyway - she has passed that window where her auditory system could respond from the input of a CI. At best she would probably only get environmental sounds and that's if she doesn't experience headaches etc.

Considering this situation, she would require intensive therapy and commitment to get benefit from a CI. It would be a waste of time for the parents to go ahead with the CI, considering that she is very opposed to it and will be resentful from the start. She will not be motivated to take part in it. The research I recently posted from Gallaudet said that people implanted when adolescents or near have the worst results with CIs and have the most negative feelings about it.

I think that 10 years old is old enough for parents to listen to their child's feelings and indeed they should. However, when we have debated this before, we were discussing much younger children, who are unable to make such a decision. Usually, when a CI is implanted on a child, it usually takes place much younger than 10 years of age.

I also think it's another argument that if you are going to do a CI, the younger the better because it avoids the stress and worry that older children feel when they see graphic pictures, hear exaggerated stories and so on. I"m sure that we've all felt more scared about going to the dentist after sharing stories about "the great big needle" with our school friends.

I will ask my friend who works with that child at the other school about the social worker, pychologist, and the high risk of the child not benefitting from the CI. Thanks everyone for your input. Will discuss with my friend..maybe she can contact the CI center. Not sure if that would be unethical since she is a teacher and everything. Hmmmm..

 

[shel90]

I'm going to open this debate up.....

WHile I do think that the parents and child should be getting some consuling prior to making this decision may I ask where you got the information that should basically be concidered private?

How do you know that one clinic disapproved implantation and the 2nd on approved?

Did the parents tell you? the child?

Just curious since I believe that it is a private medical matter and should not be bandied about on the internet just because you disagree with the parents.

I also find that the 'first the child agreed' "At first, she was excited until she saw the pics of the actual surgery and understood that she will need intensive speech therapy afterwards. She has been begging her parents about not getting one and been really crying a lot about it. She begged us deaf adults to convince her parents to cancel it" also since you know so much about the whole thing who gave her the information? a friend? a deaf adult? her parents? (whom you say cannot adequetly communicate with her since they aren't fluent in ASL?) a social worker at the clinic? was it presented so she would understand it by someone nutral in the whole issue or was it presented by a fellow deaf person who is anti ci?

hey if we're going to rip some parents apart maybe we need to have an indepth discussion on who is telling the child what? JMO of course. have at it. I for one hope the child and her parents talk to someone who is knowledgable and neutral, who will interpet issues to the child truthfully and not emotionally on the issue and they can make the appropriate decision for her. Ci's aren't for everyone but having read some posts here it really sounds at times like the anti's can be just as bad as the pros, there is so much misinformation that can be used to scare a child into thinking that she doesn't want it. sigh.

good luck to the child and her family and really I do find it very disturbing that personal information is being talked about being presented to a professer in a class about a minor child whom the person presenting it would have no personal knowledge or right to talk about. The person starting this thread does NOT have the right to grant permission for this child to be discussed in a classroom discussion.

This is a case study presented by my friend. As long as no names are revealed. If I put down the names and everything, a different story. It has been approved to be used as a case study at some college programs to educate people about this kind of situation. Maybe some things have been changed..I wouldnt know. I just thought it would be interesting to discuss this here.

 

[rick48]

jag,

Very good questions, I too wonder exactly who showed a 10 year pictures of the surgery and why. I wonder too, just how neutral and unbiased some of these adults have been as well. I also believe that any social worker or implant team will see the that girl adamantly does not want to be implanted.

There are also some other inconsistencies that bother me about this story itself. On one hand we are told:

"She begged us deaf adults to convince her parents to cancel it...Now, I really think that is wrong cuz in the 10 years, they have never really bothered to learn more than a few basic signs...I think it is selfish of the parents to say that they are doing it because they want her to learn to speak so they can communicate with her."

Which sounds to me as if the author of the post knows the girl personally but then in a later post she says:

"This child is not a student at our school. I have many friends who work in the deaf programs at the public schools and at other deaf schools and I was told of this situation by my friend cuz she wanted my opinion."

Which is it? Was ten year old "begging" the author to intervene on her behalf to her parents or was the author being told about this second, third or fourth hand? Is this an actual event that is happening or a hypothetical case study being used in a college course?

My feeling then is this girl actually reached out to an adult to help her then I think it is incumbent upon that adult to contact both the parents, the implant center as well as the surgical team separtely to them of the concerns the girl told her presonally.

 

[shel90]

jag,

Very good questions, I too wonder exactly who showed a 10 year pictures of the surgery and why. I wonder too, just how neutral and unbiased some of these adults have been as well. I also believe that any social worker or implant team will see the that girl adamantly does not want to be implanted.

There are also some other inconsistencies that bother me about this story itself. On one hand we are told:

"She begged us deaf adults to convince her parents to cancel it...Now, I really think that is wrong cuz in the 10 years, they have never really bothered to learn more than a few basic signs...I think it is selfish of the parents to say that they are doing it because they want her to learn to speak so they can communicate with her."

Which sounds to me as if the author of the post knows the girl personally but then in a later post she says:

"This child is not a student at our school. I have many friends who work in the deaf programs at the public schools and at other deaf schools and I was told of this situation by my friend cuz she wanted my opinion."

Which is it? Was ten year old "begging" the author to intervene on her behalf to her parents or was the author being told about this second, third or fourth hand? Is this an actual event that is happening or a hypothetical case study being used in a college course?

I have met the child at deaf events...and yes she has begged us. I didnt say anything before cuz of privacy reasons but my friend informed me that the parents have approved to use their situation as a case study. I just paged my friend about why the parents approved it and she said that the parents might be having 2nd thoughts and reconsidering their situation. It has been going on for a year now.

I didnt know that the parents were reconsidering when I started this thread. Just found out about 10 mins ago cuz jag did bring up good points so I asked her why did the parents approved of using their situation as a case study. I am pleased to know that they are reconsidering.

Good question about who showed the pics to the child. I wish I knew more but my friend cant give me more info than this. All I know is that the child doesnt want it and before the parents were admandant but I guess that changed. Maybe the child will get a CI later when she is older. Just wish the parents would learn more sign.

 

[ismi]

Is she resistant to the idea of the CI or is it the surgery she's reacting to?

 

[shel90]

Is she resistant to the idea of the CI or is it the surgery she's reacting to?

That's a good question. I have a feeling that it is the idea of both surgery and speech therapy that she is reacting to.

Maybe I should have presented this situation as a case study as if I didn't know her. My point of this thread was to discuss on what is the ethical thing to do if a child says no to getting a CI but the parents goes against the child wishes.

My mistake for posting it the way I did and cofusing people here. Oh well..too late to change it?

 

[neecy]

personally - a 10 year old is not mentally developed enough to understand what is happening via PICTURES of a surgery. Heck if you show a child pictures of tonsil-removing surgery, or perhaps hairlip correction surgery, or any other kind of surgical procedure, they will NOT want it - their minds can not comprehend that what they SEE is going to happen while they are safely under anesthesia.

I've even seen some ADULTS here say "I would never get a CI, after having seen a picture of a CI surgery.", so its not just children that can't comprehend surgical procedures either.

 

[jag]

personally - a 10 year old is not mentally developed enough to understand what is happening via PICTURES of a surgery. Heck if you show a child pictures of tonsil-removing surgery, or perhaps hairlip correction surgery, or any other kind of surgical procedure, they will NOT want it - their minds can not comprehend that what they SEE is going to happen while they are safely under anesthesia.

I've even seen some ADULTS here say "I would never get a CI, after having seen a picture of a CI surgery.", so its not just children that can't comprehend surgical procedures either.

Mayo actually has a program parents can take their children to to learn about what to expect at their surgery. They explain in simple language what will happen. Like you will be taken to a room to wait, then taken on a rolling bed to a pre op area, then into the or with bright lights and people with gowns and masks on, etc etc then describes a little about when you wake up. Since I've never sent my now 17yo with Down syndrome into surgery awake with IV in and such I've never taken advantage of it. Espeically since they have always allowed me to gown up and walk into the or with her and stay until they put her under. I probably will for an upcoming surgery this summer. (not ci) just to see what the program is like, her ped told me about 10 yrs ago that the nurses running the program really do a very good job helping even very young children understand what will happen and why.

I really don't get where a 10 yo would get graphic pictures of what CI surgery looks like. and that's what I got from the intial post, That's why I asked the questions I did. I may have misunderstood the what the 10 yo was exposed to.

Someone does need to be the devil's advocate in all discussions, I decided to take a turn.

 

[Dark-Half]

The best way is to threaten their favorite stuffed animal with decipation. "I will rend fluffy's head from shoulders to chin if you don't listen to me you little runt!"

 

[R2D2]

The best way is to threaten their favorite stuffed animal with decipation. "I will rend fluffy's head from shoulders to chin if you don't listen to me you little runt!"

You're cruel, you!

 

[Liebling:-)))]

personally - a 10 year old is not mentally developed enough to understand what is happening via PICTURES of a surgery. Heck if you show a child pictures of tonsil-removing surgery, or perhaps hairlip correction surgery, or any other kind of surgical procedure, they will NOT want it - their minds can not comprehend that what they SEE is going to happen while they are safely under anesthesia.

I've even seen some ADULTS here say "I would never get a CI, after having seen a picture of a CI surgery.", so its not just children that can't comprehend surgical procedures either.

Respectfully disagree.

We have health and surgical books here. The children has the right to know what kind of surgical is about. We allow my children to read them and positive their questions and explain why we need surgical to correct/improve something and also watch TV as well.

My hubby got facial paralysis and heart rhythm at 3 years ago. The doctor showed me and children the grapic picture of facial paralysis and heart rhythm treatment before I signed agreement contracts. (first facial paralysis and 2 weeks later then heart rhythm). Of course my children look at them and find interest and question the doctor because we want to save his life.

After that my oldest son had a head surgery after bicycle accident at 2 years ago. Yes, it's understandable that he is fear to have a head surgery because of risk surgical. The doctor convinced him that he did with head surgery a lot of time. It took us hours to take my son's fear away due our patience. We convinced him why head surgery is an emergency before part of his body will become paralysis within one year later. He agreed to have surgery.

Tell the children the truth is the best than hide something from them. Its about trust and bond communication. The children have the feeling.

I beleive that a girl didn't think twice and just thought that it's just CI until she convinced that she has to go speech therapy after CI surgery OR she has no idea what/why surgical is about. Educate the children an earlier is the best then they will aware what surgical is about.

 

[Liebling:-)))]

Shel90's post
At first, she was excited until she saw the pics of the actual surgery and understood that she will need intensive speech therapy afterwards.

Jag's post
I also find that the 'first the child agreed' "At first, she was excited until she saw the pics of the actual surgery and understood that she will need intensive face paralysis afterwards.

rick48's post
Very good questions, I too wonder exactly who showed a 10 year pictures of the surgery and why.

See Shel90's post. I had the feeling that a girl wasn't realize that she will need speech therapy and trainings after CI surgery. I beleive that she aware what surgery is about since she withnessed many CI users around and realized that she will get train to develop speech/hear after CI surgery that's why she decide it's not one for her.

Jag's post
Did the parents tell you? the child?

No matter which one but the parents or the child has the right to rant/vent their feeling out and need our feedback. (It should be neutral feedback).

Jag's post
She has been begging her parents about not getting one and been really crying a lot about it. She begged us deaf adults to convince her parents to cancel it" also since you know so much about the whole thing who gave her the information? a friend? a deaf adult? her parents? (whom you say cannot adequetly communicate with her since they aren't fluent in ASL?) a social worker at the clinic? was it presented so she would understand it by someone nutral in the whole issue or was it presented by a fellow deaf person who is anti ci?

I think the parents should respect her wish but unfortunlately her wish is being ingored, that's why she begged everyone for the help.

One lady, I met at 5 weeks spa last year told me the sad story. Her parents ignored her wish for not want CI. The doctor convinced the parents to give her time to reconize CI issues first before she is able to agree to have surgery but the parent ignored the doctor's advice. She cried... Of course her friends noticed it and helped her.. They suggest her to see school counsellor. She did. School Counsellor tried to convince her parents but the parents are too stubborn and said that it's their decision so school counsellor informed CPS. The people from CPS are on her side against parent. The parents are sour at her... The parental and child's relationship are miserable... She suffer physically emotional and seek professional help. She felt that the parents do not accept what she is which is a really sad.

I would advise the parents of a girl to give her time to consider cons/pros about CI issues first before she agree to have CI surgery if they really loves her and want her happiness.

I received many sad stories that their wish were being ignored. It's sad that the parents have no good patience to consider their children's wish and look their feeling but think that the children don't understand and have little knowledge which it's not. The children have FEELING.

 

[jillio]

I know of this situation regarding a 10 year old who is profoundly deaf in both ears. She was exposed to speech therapy as a baby/toddler..didnt work so she is fluent in ASL. Literacy skills are fine. She has a great concept of the world around her and learns new concepts easily. Very happy and social with her friends both deaf and hearing.

Ok..for some reason, her parents decided to get her a CI so she is scheduled to get one soon. At first, she was excited until she saw the pics of the actual surgery and understood that she will need intensive speech therapy afterwards. She has been begging her parents about not getting one and been really crying a lot about it. She begged us deaf adults to convince her parents to cancel it. It seems she doesnt want it but the parents, like many of the parents here, say it is their decision. Now, I really think that is wrong cuz in the 10 years, they have never really bothered to learn more than a few basic signs and keep saying they are too busy and dont have time. This girl is very very bright and her knowledge is so advanced considering she is from a hearing family and having been language deprived in the first few years of her life due to AVT therapy. Once she was placed in an ASL program, she just took off. It is apparent that she is happy with who she is so I think it is selfish of the parents to say that they are doing it because they want her to learn to speak so they can communicate with her. I was really disgusted by that..I mean, why now? If she is happy as she is, leave it! That's my opinion.

If a child says no, is it her right or the parents' rights to their decisions?

This is not a statement to bash other parents here but a new situation and an interesting one that I have never thought of when debating about "Letting the Child Decide"

I find this situation extremely upsetting. Here is a child who is thriving in a signing environment, she is obviously interacting with both deaf and hearing, and she is being well educated. To force a child such as this to undergo an invasive procedure that has no guarantees of improving her already good functioning is to appropriate that child and her body to experimentation of the medical sort. Why for God's sake to these parents want to mess with success? Why is it that they cannot be happy with the fact that their daughter is well adjusted and thriving? The only answer I can arrive at is that they are so ethnocnetric and oralist that they believe that the only true language and the only effective way to become successful and achieve true communication is through speech. Just a revival of the oralist attitudes of the past, an expectationt hat in order for this child to achieve true integration with the hearing world she must become more hearing. All that attitude does is continue to stamp the label of "disabled" on a deaf child, and rather than helping them to adapt and integrate, further separates them from the rest of society. An old quote comes to mind--those who don't learn from history are doomed to repeat it.

 

[jillio]

set2 you took the words right out of my mouth.I dont think they would get past the social worker.From what Ive heard you have to be really willing to work hard with your CI.If this poor child tells them she's refusing to work at it and doesnt want it that I would think should put a stop to it.there is a difference between being afraid of the surgery and flat out not wanting the thing and a good s.w. should be able to tell the difference.Shame on those parents for not being willing to learn to communicate better with their daughter!

The majority of social workers are hearing and are woefully ignorant of the issues regarding deafness and CI. They tend to side with the oralists camps becasue hearing and speech are all they know and therefore have the completley mistaken belief that it is always better.

 

[jillio]

My opinion based on what you have described is that she is only likely to get limited benefit from a CI anyway - she has passed that window where her auditory system could respond from the input of a CI. At best she would probably only get environmental sounds and that's if she doesn't experience headaches etc.

Considering this situation, she would require intensive therapy and commitment to get benefit from a CI. It would be a waste of time for the parents to go ahead with the CI, considering that she is very opposed to it and will be resentful from the start. She will not be motivated to take part in it. The research I recently posted from Gallaudet said that people implanted when adolescents or near have the worst results with CIs and have the most negative feelings about it.

I think that 10 years old is old enough for parents to listen to their child's feelings and indeed they should. However, when we have debated this before, we were discussing much younger children, who are unable to make such a decision. Usually, when a CI is implanted on a child, it usually takes place much younger than 10 years of age.

I also think it's another argument that if you are going to do a CI, the younger the better because it avoids the stress and worry that older children feel when they see graphic pictures, hear exaggerated stories and so on. I"m sure that we've all felt more scared about going to the dentist after sharing stories about "the great big needle" with our school friends.

No names were used so no confidentiality has been breached. And it is necessary for people to be made aware of situations such as these becasue it allows them to be informed on all sides, not just the promise of becominghearing that the CI advocates would wish the public to see.

 

[jillio]

jag,

Very good questions, I too wonder exactly who showed a 10 year pictures of the surgery and why. I wonder too, just how neutral and unbiased some of these adults have been as well. I also believe that any social worker or implant team will see the that girl adamantly does not want to be implanted.

There are also some other inconsistencies that bother me about this story itself. On one hand we are told:

"She begged us deaf adults to convince her parents to cancel it...Now, I really think that is wrong cuz in the 10 years, they have never really bothered to learn more than a few basic signs...I think it is selfish of the parents to say that they are doing it because they want her to learn to speak so they can communicate with her."

Which sounds to me as if the author of the post knows the girl personally but then in a later post she says:

"This child is not a student at our school. I have many friends who work in the deaf programs at the public schools and at other deaf schools and I was told of this situation by my friend cuz she wanted my opinion."

Which is it? Was ten year old "begging" the author to intervene on her behalf to her parents or was the author being told about this second, third or fourth hand? Is this an actual event that is happening or a hypothetical case study being used in a college course?

My feeling then is this girl actually reached out to an adult to help her then I think it is incumbent upon that adult to contact both the parents, the implant center as well as the surgical team separtely to them of the concerns the girl told her presonally.

A child of 10 has every right to see pictures of the surgery and to understand the procedure,a nd the consequences of such. Any responsible medical professional would take time to explain the surgery, the recovery, and the consequences to a child. Lying tothe child about the surgery is the most despicable thing you could do. Just like telling them of that "great big needle" you spoke of, not to inform them patronizes and assumes that the child does not have the capablilty to understand truth when it is presented. Just as you would tell a child, "Yes this injection is going to hurt, but it will only last a minute." also you need to tell chioldren the truth about a surgical procedure that they are undergoing on an elective basis. To do anything else is to create mistrust in the child.

 

[jillio]

personally - a 10 year old is not mentally developed enough to understand what is happening via PICTURES of a surgery. Heck if you show a child pictures of tonsil-removing surgery, or perhaps hairlip correction surgery, or any other kind of surgical procedure, they will NOT want it - their minds can not comprehend that what they SEE is going to happen while they are safely under anesthesia.

I've even seen some ADULTS here say "I would never get a CI, after having seen a picture of a CI surgery.", so its not just children that can't comprehend surgical procedures either.

She is old enough to understand provided the information is presented properly, and what she sees is duscussed and talked about. Obviously, someone has giventhe child that opportunity, because she is aware of the intensive therapy required afterward. Removing of the tonsils or correcting a harelip is a surgery done to improve the health of the child, not to create a sense of hearing. CI is and will always be elective surgery. It is not done to improve the health, but to force the child into a situation of integrating with the hearing community on their terms.

And a 10 year old child is certainly old enough to know that she does not need her deafness corrected, that she is happy and well adjusted with her use of sign language. She knows that she feels comfortable and thrives in a signing environment. She knows that there is nothing wrong with her and that she doesn't need to become more hearing simply because it would be more convienient for her parents.

 

[Neo]

Thinking about that. Deaf may hard to find the jobs than hearing for future depend what jobs looking for.

 

[Liebling:-)))]

She is old enough to understand provided the information is presented properly, and what she sees is duscussed and talked about. Obviously, someone has giventhe child that opportunity, because she is aware of the intensive therapy required afterward. Removing of the tonsils or correcting a harelip is a surgery done to improve the health of the child, not to create a sense of hearing. CI is and will always be elective surgery. It is not done to improve the health, but to force the child into a situation of integrating with the hearing community on their terms.

And a 10 year old child is certainly old enough to know that she does not need her deafness corrected, that she is happy and well adjusted with her use of sign language. She knows that she feels comfortable and thrives in a signing environment. She knows that there is nothing wrong with her and that she doesn't need to become more hearing simply because it would be more convienient for her parents.

Yes that´s right.

The people often use CI issues as an excuse to compare with saving risk life/emergency. *sigh*

Yes she thought it´s okay to have CI but she wasn´t realized that she has to go to speech therapy afterward.

 

[dreama]

It is very bad to force a child to have a CI against their wishes. I hope that the parents do decide not to go along with it after all.

It's good that she can already sign and is also literate so what does she need a CI for anyway?