CI on 6 year old.

[jillio]

Just curious (not just the quoted poster, but anyone), do you know any parents of CI children who think the CI is a 'magic cure'? I haven't met any, and I was wondering if anyone had actually met one of these people who has come out and said they expected their child to be cured of deafness after the CI?

I know plenty of people who are NOT the parents (relatives, friends, etc) who think that, but then they haven't done the research prior to implantation (that the parents do) to know what it is and what it does. All of the parents of CI children that I've met or had conversations with are very knowledgeable about the subject and are the first to tell people the CI is NOT a cure, merely a tool. I've had to correct people on that numerous times myself.

I think there are probably some people who don't get the desired outcome they were hoping for, but that doesn't mean they were misinformed to begin with, only unrealistic.

I, frankly, like these types of discussions. Since we live in an area with no deaf community I think it's interesting to see everyone's opinions on controversial subjects, even if they don't agree with mine.

While the parents who actually see the CI as a magic cure, or the only way to achieve success in life, are few and far between, they do exist and unfortunately are usually the most vocal. But I would agree that most parents see it as a tool, but because of the more vocal "only way" advocates tend to develop unrealistic expectations. The problem with these unrealistic expectations is that it makes them hang onto methods that perhaps arent working for their child for too long in the hope that soon, very soon, they will get it.

 

[Cole's mom]

Jillio, thank you for your honest and very respectful explanation. I do get that you are well intentioned in this debate, and granted I have only been here recently so I don't know all of the info. I agree, you have been respectful of my story, and I appreciate that. I will also readily admit that I have only just begun this journey, and I fully anticipate that it will only get more difficult. I hope that through respect we can help new families see that all sides need to be heard and the children need to be the focus, not what is easiest for the parents. Last week, I met a mom of a deaf teenager who was implanted when he was 3. She shared with me her frustration and disappointment in those who convinced her that he wouldn't need sign. You are right, frequency and db loss aren't a good measure for how well these kids can do orally, as he could hear to 15 db. He struggled through mainstreaming through 6th grade, and then for 7th they enrolled him in a deaf school where he is flourishing and very happy. Long story, point being, there are parents out there who do see that sign has great value to these kids, and hopefully the tide will shift toward an acceptance of both. But, there will always (I am guessing) be loud voices on both sides that parents can cling to if they don't want to hear the other side and back up their method, no matter what the results from their kiddo.

 

[jillio]

Jillio, thank you for your honest and very respectful explanation. I do get that you are well intentioned in this debate, and granted I have only been here recently so I don't know all of the info. I agree, you have been respectful of my story, and I appreciate that. I will also readily admit that I have only just begun this journey, and I fully anticipate that it will only get more difficult. I hope that through respect we can help new families see that all sides need to be heard and the children need to be the focus, not what is easiest for the parents. Last week, I met a mom of a deaf teenager who was implanted when he was 3. She shared with me her frustration and disappointment in those who convinced her that he wouldn't need sign. You are right, frequency and db loss aren't a good measure for how well these kids can do orally, as he could hear to 15 db. He struggled through mainstreaming through 6th grade, and then for 7th they enrolled him in a deaf school where he is flourishing and very happy. Long story, point being, there are parents out there who do see that sign has great value to these kids, and hopefully the tide will shift toward an acceptance of both. But, there will always (I am guessing) be loud voices on both sides that parents can cling to if they don't want to hear the other side and back up their method, no matter what the results from their kiddo.

I think the tide is beginning to shift, however slowly. It is the very loud voices of those who have sometimes been labeled as militant and "haters of hearies" that have started the movement of the tide. I personally feel that we must continue to speak up in order to keep the momentum going. The Deaf have long had a problem of how to make themselves heard over that powerful "other voice" of the hearing who see them and their needs differently than they do themselves. Traditionally, policies have been put in place based on what the hearing perceive as the needs of the deaf and not what the Deaf themselves define as their needs. It is long past time for a change in that approach.

Stick around. While these discussions can sometimes get nasty--and I will admit to sometimes being led into that behavior by frustration over those who simply refuse to consider the possibilites--I am not really an unreasonalbe person and seek to impart knowlege only in order that people like you can make up ypur minds after having seen all sides. It is not my job, nor my desire to tell you what you should do.

 

[neecy]

I'm curious - you say (jillo) that the parents who think that CI's are miracles or magic are usually the most vocal ones - how come I've never encountered this mindset on any of the mesage boards/forums/mailing lists I've participated in (this board and several others.) On the contrary I encounter the attitude that CI's are a tool which with work from both child and parents, have the ability to improve communication/comprehension quality. I've not once come across anybody who has said that all you have to do is implant a CI in a child, switch it on, then walk away because it will magically do everything on its own.

HOWEVER, I HAVE encountered many man DEAF people who claim that hearing people say this....I've just never encountered it myself.

 

[neecy]

I can honestly say you don't know the real facts. I've known Cloggy for several years and there have been several 'witch-hunts' to try to get him banned and even going as far as making up fake emails to try to make him look like he lies - but its just that - a witch hunt. SxyPorkie keeps saying he lied to her because he doesn't teach Lotte sign language, when all you have to do is go to his blog and you will see posts AND pictures of Lotte signing.

Unfortunately Cloggy tells it like it is - and it seems there are certain groups that simply do NOT want to hear (no pun intended) what he has to say, and would prefer to keep their heads stuck in the sand. Cloggy (and other CI -parents) neither troll nor lie - they work their hardest at trying to get people who have misunderstanding, misconceptions, or believe in the MYTHS to understand the real story. He uses his daughter as a wonderful example of the possibilities of CI - unfortunately (again) his positive experiences are CONSTANTLY ignored or disregarded as "atypical" simply because they are positive. You can't blame him for feeling frustrated - how would you like it if every single thing you said that was good in your life was attacked piece by piece simply because somebody couldn't stand thinking that you could be happy?

You tell her to not listen to other people, but tells here what you think and that CI is good. This is another possible start of a long bashing thread, that I will contribute with a bit here.

This bashing from pro-CI/oralists toward our ASL/deaf culture experts, honestly reminds me of teenagers bashing their parents, because they are depedent on them.

If I was an administrator, I would ban Cloggy a long time ago for insulting, rude comments, trolling and lying. But, on the other side, he is giving us all a bad impression of oralism, both deaf and hearing parents, so perhaps we should keep him here, as an perfect example.

I am outta those CI threads due to lack of time.

Keep up the great work all of you here standing against audism, no names in fear of missing out anyone, but you know who you are!

See you at deafread.com(few captious oralists there due to ASL content

 

[Boult]

I'm curious - you say (jillo) that the parents who think that CI's are miracles or magic are usually the most vocal ones - how come I've never encountered this mindset on any of the mesage boards/forums/mailing lists I've participated in (this board and several others.) On the contrary I encounter the attitude that CI's are a tool which with work from both child and parents, have the ability to improve communication/comprehension quality. I've not once come across anybody who has said that all you have to do is implant a CI in a child, switch it on, then walk away because it will magically do everything on its own.

HOWEVER, I HAVE encountered many man DEAF people who claim that hearing people say this....I've just never encountered it myself.

I am in same shoe with neecy...

except for the media though...

 

[jillio]

I'm curious - you say (jillo) that the parents who think that CI's are miracles or magic are usually the most vocal ones - how come I've never encountered this mindset on any of the mesage boards/forums/mailing lists I've participated in (this board and several others.) On the contrary I encounter the attitude that CI's are a tool which with work from both child and parents, have the ability to improve communication/comprehension quality. I've not once come across anybody who has said that all you have to do is implant a CI in a child, switch it on, then walk away because it will magically do everything on its own.

HOWEVER, I HAVE encountered many man DEAF people who claim that hearing people say this....I've just never encountered it myself.

I have encountered a few over the years, neecy. The parents that are looking for information usually lay back and ask questions. Those are the type that you will normally find--but not always, obviously--on a frum such as amessage board. They are interested in seeking answers and understanding in order to truly help thier deaf child. They try to balance all of the options.

The ones who most vocally support CI, and see it as a "cure" for deafness--and I don't mean the simple lack of auditory function here, but the social and educational aspects, as well, are those that continue to insist that now their child can "hear" through this brand new miracle of science and therefore, no longer needs the support of deaf things like sign, or terps, or exposure to other deaf people.

Perhaps you don't encounter them, but I do.

 

[jillio]

I can honestly say you don't know the real facts. I've known Cloggy for several years and there have been several 'witch-hunts' to try to get him banned and even going as far as making up fake emails to try to make him look like he lies - but its just that - a witch hunt. SxyPorkie keeps saying he lied to her because he doesn't teach Lotte sign language, when all you have to do is go to his blog and you will see posts AND pictures of Lotte signing.

Unfortunately Cloggy tells it like it is - and it seems there are certain groups that simply do NOT want to hear (no pun intended) what he has to say, and would prefer to keep their heads stuck in the sand. Cloggy (and other CI -parents) neither troll nor lie - they work their hardest at trying to get people who have misunderstanding, misconceptions, or believe in the MYTHS to understand the real story. He uses his daughter as a wonderful example of the possibilities of CI - unfortunately (again) his positive experiences are CONSTANTLY ignored or disregarded as "atypical" simply because they are positive. You can't blame him for feeling frustrated - how would you like it if every single thing you said that was good in your life was attacked piece by piece simply because somebody couldn't stand thinking that you could be happy?

I would suggest that his experiences are regarded as atypical not because they are positive, but because they really are atypical.

 

[deafskeptic]

What's typical for CI'ers who were implanted when young? I'd like to know, Jillio. I've met only two CI'ers in my life.

 

[Cloggy]

I would suggest that his experiences are regarded as atypical not because they are positive, but because they really are atypical.

You would suggest that my experiences are regarded as atypical not because they are positive (because obviously they are), but because they really are atypical in your eyes, since in your world, you have yet to meet a child that is succesful.. You don't have to look any further, since when you look around you can see all children that have a CI, and they are all miserable.......

And no matter what anyone says, it's all a lie, because, when you look around you, you see the truth....

I'm really glad you (and Shel) are helping all these children because I'm sure they need it....
I also hope that you will find it in yourself to get into the world and meet the children that are doing it the typical way, those who do well, who do great...

 

[jillio]

What's typical for CI'ers who were implanted when young? I'd like to know, Jillio. I've met only two CI'ers in my life.

The CIer's I have had contact with--through a school for the deaf, through disability services in the college, and on a personal basis, fuction as HH, and still require support services, especially in an educational environment. All that I have worked with still use terps in the classroom, as well as notetakers. Also, terps for extra curricular activites and seminars. So to not need sign language would certainly be considered atypical according to the students I have worked with.

I'd like to ahve shel's input on this as well, as I believe she has, at her school as well, CI stuents who still need the visual support of sign.

 

[deafskeptic]

I've seen several of Shel's posts on the subject but she's welcome to comment on them for others to see. I think she'd be able to confirm what you said.

 

[R2D2]

I've seen several of Shel's posts on the subject but she's welcome to comment on them for others to see. I think she'd be able to confirm what you said.

To some degree, Jillio and Shel's observations are from the section of CI children who have been selected as needing extra communication and education support in the first place. And these would be for a variety of reasons that we cannot know, since we do not have all their personal information. If I understand correctly, Shel's school gets the students who haven't done well in the public school system, implying that those who are doing okay are kept there.

When you are only exposed to a particular section of a population, then it can affect how you perceive the whole group generally. Rick for example says that in his experience, the CI children he has come across are doing very well. Again, it's another section of the CI population. There are not many people on this board who have been exposed to the whole range of children who were implanted at an early age.

 

[R2D2]

You tell her to not listen to other people, but tells here what you think and that CI is good. This is another possible start of a long bashing thread, that I will contribute with a bit here.

I think you've read too much into my words flip. I am an advocate for Colesmom doing what's best for Cole and her family. Whether that is a CI or not I don't care. I supported my own sister who chose not to implant her son. There is no one size fits all solution for every deaf child.

This bashing from pro-CI/oralists toward our ASL/deaf culture experts, honestly reminds me of teenagers bashing their parents, because they are depedent on them.

Who is bashing deaf culture and ASL here? Colesmum has made an effort that way but you don't seem to have noticed

 

[R2D2]

But, at the TC program here in my community, I was very shocked and disappointed in the level of language skills in the preschool program when I visited. I dropped in one day to check it out, and the implanted kids I saw in that class were very behind, even to my "uneducated" eye. I asked and was told that some of the families don't use any sign, and the kid wears the CI inconsistently at home, which means they are missing tons.

That's probably because the particular TC program is used as a dump for the children of parents who can't be bothered either way in either learning to sign or in maintaining the wearing of their CI. This means that the children wouldn't get any language at all. I just cannot fathom how any parents would not want to get some form of language into their child.

It doesn't necessarily mean that all TC programs are bad per se. Perhaps you could voice your concerns to the teachers there and they might have some ideas. Are there any others around that are teaching children more at Cole's language level?

 

[rick48]

Without igniting WWIII, I do recall that Shel said that it was 6 ci kids out of 40 that were not doing well, so that percentage is 85% doing average or better.
Rick

 

[rick48]

Just curious (not just the quoted poster, but anyone), do you know any parents of CI children who think the CI is a 'magic cure'? I haven't met any, and I was wondering if anyone had actually met one of these people who has come out and said they expected their child to be cured of deafness after the CI?

I know plenty of people who are NOT the parents (relatives, friends, etc) who think that, but then they haven't done the research prior to implantation (that the parents do) to know what it is and what it does. All of the parents of CI children that I've met or had conversations with are very knowledgeable about the subject and are the first to tell people the CI is NOT a cure, merely a tool. I've had to correct people on that numerous times myself.

I think there are probably some people who don't get the desired outcome they were hoping for, but that doesn't mean they were misinformed to begin with, only unrealistic.

I, frankly, like these types of discussions. Since we live in an area with no deaf community I think it's interesting to see everyone's opinions on controversial subjects, even if they don't agree with mine.

I have been around ci parents and kids for twenty years and I just do not recall any parents thinking the ci was a "magic cure" or similar term.

I am not saying that there are not some people who believe that but if so, I can count them on less the one hand and they are certainly not vocal about it because where are they?

I have met parents and adults who have been disappointed in the results for either themselves or their children and have met people who chose not to put any time or effort into post-ci rehab.

However, I would agree with your statement about most parents...it certainly dovetails with my experiences.

Its funny, when we were first starting out considering the implant for our child we were constantly told by those who opposed implants that they do not work and there is no evidence that children, especially those who are prelingually deaf like our daughter will be able to hear and to communicate orally. Now the argument is that we say the implant works too well! Oh well, as they say, there's no pleasing everybody!
Rick

 

[shel90]

I'm curious - you say (jillo) that the parents who think that CI's are miracles or magic are usually the most vocal ones - how come I've never encountered this mindset on any of the mesage boards/forums/mailing lists I've participated in (this board and several others.) On the contrary I encounter the attitude that CI's are a tool which with work from both child and parents, have the ability to improve communication/comprehension quality. I've not once come across anybody who has said that all you have to do is implant a CI in a child, switch it on, then walk away because it will magically do everything on its own.

HOWEVER, I HAVE encountered many man DEAF people who claim that hearing people say this....I've just never encountered it myself.

It must be the media making it seem like the parents are saying that that lead us deaf people to believe that? Or maybe it is the specialists saying that?

 

[shel90]

To some degree, Jillio and Shel's observations are from the section of CI children who have been selected as needing extra communication and education support in the first place. And these would be for a variety of reasons that we cannot know, since we do not have all their personal information. If I understand correctly, Shel's school gets the students who haven't done well in the public school system, implying that those who are doing okay are kept there.

When you are only exposed to a particular section of a population, then it can affect how you perceive the whole group generally. Rick for example says that in his experience, the CI children he has come across are doing very well. Again, it's another section of the CI population. There are not many people on this board who have been exposed to the whole range of children who were implanted at an early age.

My school is starting to get the children who do benefit from their CIs due to our new CI program. Many of the parents like the idea of their children having both instead of oral only. Our school is not there solely for the purpose as dumping grounds but unfortunately most of the students were referred from the mainstreamed programs. We are starting to see an explosion of middle school aged kids with CIs being referred to our school. Matter of fact, we had to hire 2 more teachers for middle school due to the growth. That was a very new thing for the school to experience.

I worked in a public school about 3 years ago for a summer teaching job and there were like 30 or so deaf kids who attended the public schools in the summer program. About 3/4ths of them had CIs and they used sign language. That was my first exposure to children with CIs still needing to rely on sign language. The teachers say that some of them can speak and listen pretty good but need sign support for new concepts or new vocabulary.

Today, The Wild Zappers did a show at my school for everyone. They are a professional Deaf dancing troupe. Well, when they introduced themselves, one of the deaf dancers spoke in the microphone to interpret what the other dancers were saying. Many of the parents whose children are in family ed ( most kids in family ed go to our school for early intervention but end up going tp public schools) were shocked by how well he could speak despite being profoundly deaf without a CI. Mind u, about 90% of the children in family ed have CIs...5 years ago it was about 10%..big difference!!! I was happy that he did that cuz it showed them that it is ok to have both and that ASL wont interfere with the children's ability to speak. Two of the mothers were considering putting their children in public schools but after the show they said that they finally see the beauty of ASL and now considering changing their minds. Their chidlren really took in delight in the show.

I dont know what is happening out there...My aide is a late CI user..she got hers 5 years ago at the age of 30 and does well with it..and I have some students who got CIs when they were babies and dont benefit from them and some who do. It is weird how deafness works. BTW..that boy who had emergency surgery got his new implant activated ..the parents told us that he didnt want it at all and had a fit cuz the new CI was too loud for him but he wore it today like he did before. Everyone is different.

 

[rick48]

What's typical for CI'ers who were implanted when young? I'd like to know, Jillio. I've met only two CI'ers in my life.

deafskeptic,

If you do not mind me stepping in, I have met hundreds of ci kids and there are many variables but three which are extremely important:

1. Length of time between onset of deafness and implantation. Obviously, the shorter that time period the better.

2. Post-operation speech and language therapy. Again, if you provide oral speech and language therapy combined with an oral home environment, it usually leads to better results.

3. Parental involvement. Need I say any more?

If you can combine those three variables in their most positive form, then the results for children, as Lotte evidences, are the development of oral language as the primary mode of communication. These kids are not "atypical", they are the norm. As you stray further from those variables, the less likely will be those results.

Again, as there are no guarantees, parents should closely monitor their child's development and always be willing to utilize different communication methods. In short, nothing should be set in concrete.