Why adults choose CI's for their children

[Cloggy]

Let me to break in some figures that 95% of parents that not want their children to have cochlear implants and other 5% of parents want their children to have cochlear implants because they think that cochlear can help cure their hearing loss, can talk and successful in the world. That's bullshit.

From memory: 95% of deaf children are born from hearing parents and will very likely want CI for their child. 5% is born from deaf parents and likely will not choose for CI....... I could check, but please tell me where you got your numbers. They seem to be the wrong way around.

 

[sr171soars]

Mr. sr17soars, Can I ask about how your CI decision was made? Was it you that decided or was it your parents and do you recall what drove the decision?
Thank you.

Er...sorry for intruding on this thread but I just had to clarify the bit about how we process sounds....

To answer your question, I made the decision (a little over one year ago) but to be fair I've gone past 40 some time ago.

The reasons are quite straight forward...
1) My hearing was seriously going south.
2) My speech was starting to show the effects of my inability with a HA to hear my own words and of course others.
3) My family is hearing and my world is hearing (and always has been).
4) I saw the opportunity/possibility to be able to regain my hearing that would allow me to stay in the hearing world.

It was in effect my last stand and fortunately for me it worked out well. Lest anybody misunderstand me, I would have survived just fine if it didn't work out but I would definitely have some adjustment issues.

 

[Cheri]

From memory: 95% of deaf children are born from hearing parents and will very likely want CI for their child. 5% is born from deaf parents and likely will not choose for CI....... I could check, but please tell me where you got your numbers. They seem to be the wrong way around.

Where do I find those firgures at?

 

[R2D2]

Where do I find those firgures at?

I found them by doing a google search using "90% + deaf children + hearing parents" It turned up many references that support what Cloggy said.

Some of the references also say that 90% of deaf parents have hearing children.

 

[Cheri]

I found them by doing a google search using "90% + deaf children + hearing parents" It turned up many references that support what Cloggy said.

Some of the references also say that 90% of deaf parents have hearing children.

I did too, and I did not find at least one that stated what Cloggy said. I already knew that there are more deaf parents with hearing children, I'm talking about CI.

 

[R2D2]

I did too, and I did not find at least one that stated what Cloggy said. I already knew that there are more deaf parents with hearing children, I'm talking about CI.

Here are some to help you.

More than 90 percent of deaf children are born to hearing parents.

http://www.deaftoday.com/v3/archives/2005/04/implants_stir_f.html

Indeed, 95% of all deaf or hard of hearing babies are born into hearing families with no prior experience with deafness or hearing loss.

From http://www.handsandvoices.org/services/guide.htm

Communication difficulties often exist in family systems with a Deaf member, since 90% of all parents of Deaf children are hearing (Schein, 1974)

http://www.mncddeaf.org/articles/problem_ad.htm

95 % of deaf signers born into hearing families ... practice to encourage hearing parents of deaf children to learn to sign, and to expose deaf children to ...

www.un.org/esa/socdev/enable/ rights/ahc5docs/ahc5wfdside.doc

 

[Cheri]

R2D2,

Thank you so much! I can see that most hearing parents went ahead and implant their deaf children. It makes me wondered if that is what they want, (the parents) for their children. It makes me wondered what they are actutally thinking, if they panic when they had a deaf child at birth, and wanted to change that child to be like them.

 

[Cloggy]

R2D2,

Thank you so much! I can see that most hearing parents went ahead and implant their deaf children. It makes me wondered if that is what they want, (the parents) for their children. It makes me wondered what they are actutally thinking, if they panic when they had a deaf child at birth, and wanted to change that child to be like them.

Have you read ANY of the posts I did??

I can't believe it. Information is given, then rejected by the receiver, and after a week the same question pops up....

Do you really want to know the answer??

 

[Cheri]

Have you read ANY of the posts I did??

I can't believe it. Information is given, then rejected by the receiver, and after a week the same question pops up....

Do you really want to know the answer??

Cloggy, I was not speaking of you, I know that you shared your story about why you implanted your daughter, But, there are many other hearings have not came here at AD to shared their story makes me wondered, if they don't want to be part of learning about the Deaf Culture.

 

[rockdrummer]

Cloggy, I was not speaking of you, I know that you shared your story about why you implanted your daughter, But, there are many other hearings have not came here at AD to shared their story makes me wondered, if they don't want to be part of learning about the Deaf Culture.

While I can't speak for everyone Cheri, I know that for me finding AD was not easy. I have been struggling for a long time to find deaf resources. I am really struggling just to meet some deaf adults in my area to be able to make friends with them and be able to actually use ASL on a regular basis. My son doesn't sign that much but I know down the road he will because it's our only means of communication. While what you say is true (and sad) some adults with deaf children are not even interested in learning to sign let alone seeking out resources that will help them understand the deaf culture. It really makes me wonder what kind of parents they are. And it's probably those types of parents that would choose a CI because they can't accept their child as being deaf as opposed to the many other reasons spoke of here.

Thank you Cheri for your insight.

 

[SarahsDad]

Hi everyone,
I'm new here. My beautiful little girl Sarah just turned two. She is profound bilateral deaf and currently using hearing aids. As yet, hearing aids have not helped much. Sarah's mom and I are both hearing and are trying to decide if CI is right for our family. We're grateful for forums like this on the internet, and we'd like to share our thoughts and get your feedback. Please forgive in advance if anything we think offends you, as this is a sensitive subject. We're learning and still ignorant in many areas, especially Deaf Culture.

Our Thoughts Against CI
1. Sarah is beautiful just as she is. She doesn't need "fixing"!
2. If implanted, will she be rejected by some in the Deaf community?
3. Despite our best efforts, will she resent our choice for her when she is older?
4. It could be a failure and offer no benefit.
5. Surgery has risks.
6. CI may make it impossible for future treatment like stem cell or other research, (unlikely soon, but who knows?).
7. Dependence on a technological device.
8. Assuming a CI "success", what if the device fails years after becoming dependant on it?
9. Sarah could end up Not Hearing, and at the same time Not Deaf.
10. Our greatest desire is for our daughter to be happy, and we believe happiness is more a result of good character and right thinking, and has little to do with whether one is Hearing or Deaf. Hearing is ok. Deaf is ok. Is CI necessary?

Our Thoughts For CI
1. The hope that Sarah will acquire spoken language and be able to communicate with the other 99% of the population without an interpreter or other device.
2. The hope that Sarah will be able to deeply interact with her whole family. I read that something like 80% of hearing parents of deaf children are not ASL proficient. That floors me, but sadly it's not unbelievable. If parents aren't ASL literate, what about everyone else in the family? We learn so much from communication with family members and we very much want that for Sarah.
3. Education. Sarah can reach the highest levels of education without hearing, however the statistics say this is difficult.
4. Telephone communication without relay service listening.
5. Music.
6. Seeing other successful CI implant users, will my daughter resent the fact that we didn't do everything medically possible to give her access to spoken communication and sound.
7. If we wait till Sarah is old enough to make her own intelligent decision, a huge opportunity is missed, since language acquisition is critical early in life. As parents we have the awesome responsibility to choose for our child, until she is able to intelligently choose for herself.
8. If Sarah hates the CI, can't she just choose not to wear it when she is mature enough to make the decision? We would respect her choice in a heartbeat.
9. Hearing aids are used and widely accepted by both hearing and Deaf culture, please correct if wrong. Isn't a CI just another type of hearing aid? Of course a CI requires surgery to implant (no small thing), but if surgery is the only issue here, then what is the controversy?
10. Last in importance and a purely selfish desire to be able to sing my daughter to sleep at night and to hear her call me daddy.

Thanks,
-SarahsDad

 

[R2D2]

Welcome Sarahsdad,

I would support you whatever you did. Your concern for your daughter's emotional and material wellbeing really shines through. It really is your personal decision and I don't think it would be right for anyone to tell you what to do but only to share their experiences.

However having said that I've been really grateful to have the opportunity to have oral skills. I really value my independence and I enjoyed making choices in my life such as travelling the world, learning German at school and things like that. I'm also a control freak and just find anyone interpreting for me or being some sort of go between is a loss of control for me.

Many deaf people have dual language skills (sign and speech). There is no reason why your daughter cannot have that with a CI.

Attitudes change and move on. Opposition to CIs is not what it was and many active people in the deaf community are getting them. The chances are that in 20 years or so many of your daughter's peers will have CIs.

Also having a CI is not being "fixed". Your daughter will not become a hearing person. It is just another form of hearing aid for those who don't benefit from conventional hearing aids.

It is impossible to tell what your daughter will say in say 10 years time about having a CI. People are different and react differently. You have to factor this into your decision. I think that expanding her choices is not a bad thing to do and to support her in whatever choice she made later on.

 

[Liebling:-)))]

Hi everyone,
I'm new here. My beautiful little girl Sarah just turned two. She is profound bilateral deaf and currently using hearing aids. As yet, hearing aids have not helped much. Sarah's mom and I are both hearing and are trying to decide if CI is right for our family. We're grateful for forums like this on the internet, and we'd like to share our thoughts and get your feedback. Please forgive in advance if anything we think offends you, as this is a sensitive subject. We're learning and still ignorant in many areas, especially Deaf Culture.

Welcome SarahDad

No you do not offend us. We appreciate very much for your question to here. I will try to answer what I can but I do not answer all... Remember it's my opinion but I hope this forum will helps you with your decision.

Our Thoughts Against CI
1. Sarah is beautiful just as she is. She doesn't need "fixing"!

Yes but I would not implant my baby yet until my baby is old enough to have her/his choice either she/he wants CI or not. I would wear HA on my baby first until she/he familiar with it and then CI later only if she/he wants.

2. If implanted, will she be rejected by some in the Deaf community?

No

5. Surgery has risks.

This link would help you with your decision.

http://www.alldeaf.com/showthread.php?t=7043

http://www.fda.gov/cdrh/safety/020606-cochlear.html

http://www.hearinglossweb.com/Technology/CochlearImplants/CI_Information/posthr.htm

That's why I rather to wear HA on my baby first because it's risk-free.

6. CI may make it impossible for future treatment like stem cell or other research, (unlikely soon, but who knows?).

I can't answer to this because I don't know. Let CI users answer to this.

7. Dependence on a technological device.

Yes, there're cons & pros over CI what I collect from CI users.

9. Sarah could end up Not Hearing, and at the same time Not Deaf.

No, CI or HA never cure hearing but help them to hear. Your child stay deaf no matter either she wear CI or HA.

10. Our greatest desire is for our daughter to be happy, and we believe happiness is more a result of good character and right thinking, and has little to do with whether one is Hearing or Deaf. Hearing is ok. Deaf is ok.

Exactly! I am mother of 2 darling hearing sons, no matter either they are deaf nor hearing because I accept what they are. I would not get my boys to surgery to change them into deaf.

Is CI necessary?

I beleive CI is necessary for young children, not babies and toddlers. BUT but... but... I think it's too much burden on children if they "have to" train to hear and speak all the time... That's why I leave my child to have choice. It's okay if she/he WILLING do that.

I see no problem if teenager/adult want to have CI because it's their own decision. If I has deaf child then I would not implant him/her yet until he/she is mature enough to have his/her choice then I will be happy to fulfill his/her wish. Its about respect. Child lost his/her respect on you for it because she/he will feel that you want him/her to be like you.

But I beleive CI is not necessary if people don't want to train anything to speak and hear... What a waste of money... That's why I decide CI is not necassary for me because I am deaf for long time... I guess it would be different story if I'm teenager.

Our Thoughts For CI
1. The hope that Sarah will acquire spoken language and be able to communicate with the other 99% of the population without an interpreter or other device.

Not all, I have CI friends. They still need interpreter... some hard of hearing are also including as well.

HA also can help children to improve their speech development. Many deafies who wears HA and speak very good.

It would be great if CI and HA children WILLING to learn anything to speak/hear the sounds...

2. The hope that Sarah will be able to deeply interact with her whole family. I read that something like 80% of hearing parents of deaf children are not ASL proficient. That floors me, but sadly it's not unbelievable. If parents aren't ASL literate, what about everyone else in the family? We learn so much from communication with family members and we very much want that for Sarah.

Yes I aware it and find it sad because the parents want their children to be hearing like them and refused to let their children to involve with deaf, CI and HOH children. I have seen here in Germany... Really sad but most parents accept their CI or HA children as deaf and learn sign for them and let them to mix with deaf, CI and HOH children which great.

My hubby grew up oral because his parents wants it. They are afraid because they think sign language neglect speech development. I find wonderful to see many hearing parents want to learn sign and want their children to sign as well. Now they have school who allows sign and also develop thier speech as well.

3. Education. Sarah can reach the highest levels of education without hearing, however the statistics say this is difficult.

No true! A lot of deafies have good education and good job skills. I suggest you to visit deaf forums to learn more about deaf culture until you familiar with it.

4. Telephone communication without relay service listening.
5. Music.

Let CI users answer to this. I know some of my CI friends that it doesn't work on them. some work on them.

6. Seeing other successful CI implant users, will my daughter resent the fact that we didn't do everything medically possible to give her access to spoken communication and sound.

Like what I say before, let your daughter to mix with deaf, CI and HOH children until she familiar with it. Support her if she want to have CI or not. I'm sure that she would not do that to you because she know you accept what she is and positive her about deafness etc... Tell her what you feel about CI etc..

I have CI friends who lost their respect on their parents for pull them to surgery. There're no trust and loving relationship bond between them and their parents which sad.

7. If we wait till Sarah is old enough to make her own intelligent decision, a huge opportunity is missed, since language acquisition is critical early in life.

To me, I think it's not too late to have CI on children. I would say from 6 years old.

Sarah can still learn to speak if she wear HA or not. Alot of deafies who wear HA speaks very good.

As parents we have the awesome responsibility to choose for our child, until she is able to intelligently choose for herself.

Yes, we parents are responsible for our children education and emergency surgeries, etc... but CI surgery? Is CI surgery an emergerncy surgeon? Why should we change our baby/toddler's body because we want them to be like us?

8. If Sarah hates the CI, can't she just choose not to wear it when she is mature enough to make the decision? We would respect her choice in a heartbeat.

Yes, but I think it's waste of money if Sarah decide for not want to wear CI later. That's why I don't agree to implant babies to toddlers with CI until they are mature enough for want to have CI.

It's not just waste of money but risk as well.

9. Hearing aids are used and widely accepted by both hearing and Deaf culture, please correct if wrong. Isn't a CI just another type of hearing aid? Of course a CI requires surgery to implant (no small thing), but if surgery is the only issue here, then what is the controversy?

No, it's not just HA... HA and CI users are welcome to deaf culture... also hearing as well... because they accept their deafness. I heard positive about CI and said that CI is better method than HA. Let CI users answer pros and cons to this. Like what I said before that some work on CI users, some not.

10. Last in importance and a purely selfish desire to be able to sing my daughter to sleep at night and to hear her call me daddy.

Thanks,
-SarahsDad

No, it doesn't mean that you are bad and selfish because you desire for something. It's normal for everyone to have their own desires.

Mainly important is to positive your child about deafness and let her know that she is deaf and her mix with deaf, CI and HOH children. Show your child that you learn sign for her...


Remember, it's my opinion.

Important is FOLLOW YOUR HEART what you want the best for your child.

 

[Cheri]

Hi, SarahsDad

When you said, that you daughter is beautiful as she is, doesn't need "fixing" I couldn't agree with you more. With Cochlear implants provide sensitive hearing, would be able to pick up sounds, communication skills. It depends on each individuals. It might work on some, while it might not work on others. It's the same thing with hearing aids too. Either one of them (Cochlear implants or hearing aids) are not a cure for deafness. But, Parents do have the right to know about and understand the various options available. Whatever choice you make for your daughter, I do hope that you allow your daughter to continue to be active members of the deaf community and learn sign language too. Not just being active in the hearing world only, While some other Cochlear implants prefer to be active more in the hearing world than the deaf community. But, after reading your post I know you care a great deal about your daughter that you would not prevent her from being active in the deaf community.


If you want your daughter to be able to learn develop language and spoken communication, You could take your daughter to speech therapy for speech training like I did when I was growing up. I had enrolled in oral, total communication and mainstream schools with hearing aids.

Do what you think it would be best for your daughter and good luck!

 

[rockdrummer]

Hi Sarah's Dad and welcome

Welcome Sarah's dad. I was faced with this decision over 10 years ago. I have posted in this thread my experience and that the CI did not work for my child due to severe ossification as a result of menengitis. One thing you have the benefit of is the advances in technology and the experiences of those with CI's that post in this and other forums. I am glad that you are not rushing into the decision and whatever you do, don't let anyone pressure you into deciding. You sound like a level headed individual and that probably won't happen. You made some very good points for the pro's and cons of the CI which only make the decision much harder.

The only thing I can offer that was not mentioned is to go with what your heart tells you. Another point worth mentioning is that the CI experience varies from one individual to another with many variables determining the outcome. Just read posts from adults here with CI's and you will see the assisted hearing experience spans the spectrum.

Nobody has a crystal ball and I would bet the ones that do don't work anyway. Only time will be able to answer the questions you have. To my knowledge, (and someone please correct me if I am wroing) the only time sensitive factors are that young children recover better/faster from surgury and as you mentioned, language development is very important at a young age. It doesn't mean that your child will not develop without a CI, but it would most likely not be at the same pace as someone with language skills. (again, please correct me if I am wrong).

I wish you and your family all the best and would only recommend that you go with your heart and know that regardless of the outcome, you did what you felt was best based on how well you have educated yourself on the issue. You have clearly done you homework and should have no regrets either way. Go with your heart!!!

 

[Isaacsmom]

Considering CI for 13 month old son

Hello Everyone!
My husband and I are both hearing and our only son has a profound loss. No one else in either family is deaf and we don't know any other deaf people. Our son passed his newborn hearing screening in the hospital, but after I noticed him not startling to sound I pushed to have further testing done. The Doctors told me he was fine. This entire process has been so frustrating for getting hearing aids for him. It took us 3 months to get the testing done and then 7 months to get approved for medical assistance to get him aids. Finally on this past Monday, he got aids. There is really no change in him so far except trying to pull them out all the time. My husband and I are considering a CI for him because we think it will be an option for communicating in the future. We have been learinging ASL from the early intervention specialist, but I dont think I could speak to a deaf adult using ASL yet unless we were talking about farm animals or food types.It is so amazing though, our son has a vocabulary of over 30 signs already! We are learing sign and will continue to learn sign and teach our son sign. We want him to be able to communicate with deaf as well as hearing. It is such a difficult choice to make. We are going through with the testing to get him approved for the CI. The really sad thing is, a lot of my friends told me they would learn sign to communicate with our son, but haven't learned anything. This has shown us that people, even our friends won't learn sign. I never knew anything of deaf culture because I never met any deaf people. We want our son to be able to communicate with all people and don't want language to be a barrier. My and Isaac were in the store the other day before easter and he was making signs for duck and sheep and chicken and it was so amazing to me and a lady asked me what he was doing. I told her Isaac was trying to tell her there were animals. That broke my heart. He is such a smart boy, but most people wont see that because they don't understand what he is trying to tell them. If we don't get CI for him, we will want to move because there is such a small deaf community here. We don't want Isaac's options to be limited.

 

[sr171soars]

Issacmom,

Kudos for you and your husband. Just keep doing what you are doing being sensitive to his needs and you can't go wrong.

As for a CI, that is something we all can give advice but we cannot (nor should we) make the decision. I think Rockdrummer's last post (before yours) said it best. Follow your heart. As long as you are really trying to deal with this and the reality of it, you will be alright.

As a warning and you might be aware, that there are many opinions on this issue of a CI for young children. The opinions can go from one extreme to another but the bottomline is what you as parents decide.

 

[rockdrummer]

Hi Issacmom and welcome. I would echo what Mr. sr17soars said and add that you read the post above from Sarah's dad. He has highlighted quite well most of the pro's and cons that you may want to consider. And by all means, do your homework and only decide once you are comfortable that you have adequate information. Either way it's a tough decision and I wish you all the best regardless of what you decide and the outcome.

 

[Cheri]

My husband and I are both hearing and our only son has a profound loss. No one else in either family is deaf and we don't know any other deaf people. Our son passed his newborn hearing screening in the hospital, but after I noticed him not startling to sound I pushed to have further testing done. The Doctors told me he was fine. This entire process has been so frustrating for getting hearing aids for him. It took us 3 months to get the testing done and then 7 months to get approved for medical assistance to get him aids. Finally on this past Monday, he got aids. There is really no change in him so far except trying to pull them out all the time, My husband and I are considering a CI for him because we think it will be an option for communicating in the future.

You stated that you just got the hearing aids recently Monday and it doesn't help at all? What do you expect a miracle? Just remember CI nor hearing aids are not a cure to hear, That isn't enough time length to see how far your son would go with hearing aids, I can see now with my own eyes how many hearing parent jumping into getting CI too quick for their deaf children. *shaking my head in disappointing*

 

[IslandGal]

You stated that you just got the hearing aids recently Monday and it doesn't help at all? What do you expect a miracle? Just remember CI nor hearing aids are not a cure to hear, That isn't enough time length to see how far your son would go with hearing aids, I can see now with my own eyes how many hearing parent jumping into getting CI too quick for their deaf children. *shaking my head in disappointing*

Cheri has a good point.

Issacsmom, you need to give your child enough time for him to get used to his hearing aids. Most children at your son's age don't have patience with learning the sounds so give him plenty of time and a chance with his hearing aids. I remember I used to pull my hearing aids out when I was at your son's age but I got used to it after a while