Cochlear implant mends lives

rick48 said:
Why difficult to believe? Since we both have deaf children nearly the same age and since you made a decision to deny your child a ci, then you must have engaged in the same thorough research that we did in making our decision to give our daughter a cochlear implant? You just made a different decision.

Our research into the cochlear implant began in mid to late 1988 after our decision to raise our child orally. There was a child about a year and a half to two years older then our daughter enrolled in the same pre-school program who had just been implanted. So, did we first learn about the cochlear implant on our own or from seeing this child, it really does not matter. What we were able to observe is the profound and tremendous impact the ci had on a child just older then our daughter. So we talked to these parents extensively (we have remained friendly with them and our daughters remain friends to this day). Since this was the pre-google era, we also did old fashioned roll up your sleeves hard work learning about the ci and contacting various people.

We learned there was a small organization of cochlear implant users called CICI and we went to their convention in Fishkill, NY in June/July of 89 just weeks before our daughter's scheduled surgery. We met many more deaf adult users and a few other children who confirmed what our months of phone calls and personal observations had shown us. We met and talked to representatives from Cochlear Corp who we had previously talked to over the phone.

Why is it difficult to believe that we approached the ci surgeon, what are they gods? This was our child, our baby who we were in the midst of deciding whether to undergo surgery, you better damm well believe that my wife approached them and questioned them at length before deciding what to do. Before entrusting our child into their hands. Didn't you do the same?

We had the distinct pleasure of talking at length several times with two of the leading ci surgeons then: Simon Parisier of MEETH and Noel Cohen of NYU. They were patient, understanding, answered all our questions and did not try to influence us one bit. Dr. Cohen, who we twice entrusted our daughter's hearing to, is one of the finest men you will ever meet and an outstanding professional. Why not question the audiologist, he was and still is our daughter's audi and he too answered all our questions and we laugh to this day about his comment that perhaps at best, the cochlear implant would give her some access to sounds.

So yes, we sought out the cochlear implant on our own for that is what we believe responsible parents making a well informed and reasoned decision need to do: seek out the information, talk to adult users, talk to parents of children and talk with the professionals, ask your questions, get your information, evaluate and then decide whether its in your child's best interests, but again I am probably telling you something you did at roughly the same time as us.

Thanks for taking my words out of context, I knew you would be unable to write a post without doing so. I did not say there was no advertising involved, I said it was not a factor: big difference. We are purchasing a car tonight but I could not tell you one of their commercials. Advertising involved yes, a factor no. I guess no apology will be forthcoming from you, well I never expected one from you anyway.
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Such good points Rick. When we were starting to think about the implants it was because we meet several other preschoolers slightly older then my son. I can tell you now 13 years later when we go to see the surgeon or audiologist, I am know as the mother who went to state captiol to make sure that her son was not told he couldn't get an implant because the family didn't have the money then.
 
jillio said:
And I would ask you the same question that I asked rick48. Did you, as well research all of the other options prior to investigating a CI and seeking out a CI surgeon. As your son is still quite young, I am assuming that you did not, but correct me if I am wrong.
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I do not know if Drew's dad did look at other options but I know I did. I looked at all the TC programs in my area along with oral programs. I even drove 4 hours north to see a cued speech program. This was all before I even started research the CI
 
rick48 said:
No honey, FDA approved means that it is not experimental. And gee, neither were we threatened by our daughter's deafness for we embraced it and gave her all the opportunities then available. So I guess sweetie pie, its you who do not understand either the concept of "forcing" or doing complete research before making a decision.
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RIGHT ON. This is what we did and what we wanted to accept their deafness as it is not as the Deaf culture wants us to. We accepted and gave our children has many opportunties as we can, not thinking about what the deaf culture but what our children needed.
 
jillio said:
Because, cloggy, the rest of the world does not adhere to the U.S. cultural construction of deafness. And because you cannot apply U.S. standards to the rest of the world because the rest of the world is not the U.S. It would seem that this would be obvious to you. And no, CODAs are actually sign based, as their first language is ASL, unless they were raised by oral deaf adults.

And, yes, you could study, but apparently you find that too great of a drain on your time, or see that by becoming more informed of the reality of the situation, you would perhaps have to adjust your position.

If I must explain to you how America is different from the rest of the world, you are obviously less in possession of critical thinking skills that I previously thought. And why is it, whenever your points are refuted with valid and creible arguments, it is only a diversion? The only diversion being created is the one in which you refuse to offer proof of your arguments and then bring up irrelevant points to redirect the issues.
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Jillo why do you have to be so mean. Does make you feel better? You made your choice, we made are. And now you are making such a big deal for a couple % points, Why?
 
rick48 said:
I would be curious to know from other parents and from adult ci users, what were the most important factors that you considered in making your decision to get a cochlear implant for either your child or for yourself?

Was is advertising from implant manufacturers? Statements from ci surgeons. Statements from audilogists. Your own observations of actual ci users? Something else?

Rick
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Hi Rick.
I decided to begin exploring the option of a CI after a co worker asked me about Advanced Bionics. (he ended up getting a BAHA since his problem was in the middle ear...I think) Anyway I read the site then checked to see who in my area did implants for that particular company. Turns out my place of employment has a center. So I called to make an appointment to see my daughters ENT to see if my hearing loss would allow me to use a CI. They made the appointment to do the testing first at the CI center, you don't talk to the ENT about it until after you've tested, not sure why. But I didn't qualify and seeing the ENT after thta appointment was more of an informative meeting. (he said that basically there is not type of hearing loss that wouldn't be helped by a CI, but as my co workers experience shows they determine if other options are a better choice) I retested a couple months later, saw the ENT again and both he and the audiology dr. decided that because I failed so well in the noise tests they'd try for the approval to implant 'if' I wanted to take the risk now. Since I really hate not being able to hear and understand those around me I went for it. And the rest is history and I really, really enjoy life now. And I still test uner 90% in the HINT sentences in quiet. But it's so much better.

I have a sister who has been deaf in one ear since an infection when she was really small. They had to regraft an ear drum and the bones were basically not there. now in her early 40's the hearing in her 'good' ear is getting worse. She began looking into options about a year or so ago to. In her case they attempted to re do the bone structure in her middle ear. While she does get some sound, and I sent her one of my HA's a couple months ago, the sound isn't much more then letting her know someone is talking on that side. She saw her ENT and he said that the HA could be used in the 'good' ear, they'd program it for her loss and he felt that a BAHA would give her excellent hearing in the 'bad' ear. She to is looking forward to actually having a better idea of what's going on around her. Being hoh sucks. :) But she to looked into CI's and it wasn't because of advertisements and her ENT did say that at this time even though she's completely deaf in that one ear a CI is NOT the best option for her. So really most surgeons/ents do not push them on people who would have other options. And these ents are not in the same state or the same clinic system.
 
jillio said:
... So again, it was experimental in nature during the time periods that you referenced.

No, to embrace something means that you accepted as is without attempts to surgical change the nature. And to place your child in a situation where she is not exposed, from the very beginning to alternative solutions, and requiring that she adapt to your mode of communication, is indeed, forcing.
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So, again, it was not experiemental but FDA approved for adults and in clinical trials for children pending FDA approval which it was given, thanks in large part, to children such as my daughter and parents, such as my wife, who could see the unlimited possibilities and opportunities.

Sorry, but do not accept your definition of either "embracing" or "forcing". She was exposed to alternative solutions---hey, wait a minute--wasn't it you who chastised another parent for using that very same word, saying why does deafness need a solution? You are now attacking yourself--a first!!

What we chose, was what was best for our daughter, so use whatever term you like because I find anything you say to be totally biased of no merit. You were not there, you do not know either her or us and you are wrong. I have living and loving proof of how wrong you were, are and always will be.

The fact that you think that by electing to have the ci surgery for our daughter, we were attempting to change her nature just demonstrates how little you know about cochlear implants, cochlear implant users and parents of cochlear implant children.

You just don't get it.
 
jackiesolorzano said:
Jillo why do you have to be so mean. Does make you feel better? You made your choice, we made are. And now you are making such a big deal for a couple % points, Why?
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These are debates that have been ongoing for quite a long time, and you have no idea of the historical context. You are jumptiong to cloggy's defense simply because you see that he is an oralist like you, and want to bond over the sameness of experience in order that you may justify each others decisions. I have not been mean, simpl;y outspoken and honest. Why do you have to be so emotional?
 
rick48 said:
So, again, it was not experiemental but FDA approved for adults and in clinical trials for children pending FDA approval which it was given, thanks in large part, to children such as my daughter and parents, such as my wife, who could see the unlimited possibilities and opportunities.

Sorry, but do not accept your definition of either "embracing" or "forcing". She was exposed to alternative solutions---hey, wait a minute--wasn't it you who chastised another parent for using that very same word, saying why does deafness need a solution? You are now attacking yourself--a first!!

What we chose, was what was best for our daughter, so use whatever term you like because I find anything you say to be totally biased of no merit. You were not there, you do not know either her or us and you are wrong. I have living and loving proof of how wrong you were, are and always will be.

The fact that you think that by electing to have the ci surgery for our daughter, we were attempting to change her nature just demonstrates how little you know about cochlear implants, cochlear implant users and parents of cochlear implant children.

You just don't get it.
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If your daughter was a juvenile when the procedure was performed, then it was an experimental procedure. You are the one who doesn't get it.
 
jackiesolorzano said:
RIGHT ON. This is what we did and what we wanted to accept their deafness as it is not as the Deaf culture wants us to. We accepted and gave our children has many opportunties as we can, not thinking about what the deaf culture but what our children needed.
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All audists theink alike. And what is frightening is that they do not even concieve of the erroneous nature of their assumptions despite the empirical evidence to the contrary. And where is that open mind again?
 
All I see are two teams forming..the ASL team and the oralist team being against each other. I think it is becoming silly and I am losing interest in all the snide comments. If u want your children to be raised orally, just keep in mind of all the issues that can pop up and just keep an open mind with your children pls. Many of us deaf people dont want them to go thru what we went thru...also, pls pls check with them every 5 mins if they understand everything that is being said around them constantly ESPECIALLY in the educational setting. I am tired of seeing so many older deaf children being referred to our school sooooooo delayed and they are bright kids with normal congnitive functioning. It is such a waste and if u are all for it, then that is a shame!

That's why many of us believe in using both approaches cuz we care about ALL children. It is not about us. It seems like many of u are forgetting that and accusing us of not caring.
 
shel90 said:
That's why many of us believe in using both approaches cuz we care about ALL children. It is not about us. It seems like many of u are forgetting that and accusing us of not caring.
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Actually Shel what I see as a deaf/hoh orally raised now CI person is some people who embrace deaf culture saying that those who's children are successful without using ASL, and whom know quite of few other kids their childrens' age who are successfully using CI without ASL being told by certain elements that they are just audist.

Cloggy is not an Audist, as someone always seems to insist. If that person or persons ever really read what Cloggy has said they would have read the part where he said his DAUGHTER is the one who is dropping the sign language, not her family members. They are just following her lead. I'm not sure about Rick, I assume they developed or used over time some type of visual language when the CI was/is off, it also sounds like they worked hard to make their daughters oral language a success at a very early age. BTW, it is not that bad of a thing if they talked talked and talked some more, encourageed proper pronunciation when their daughter was a toddler, it's the way that language is learned. At this time I see my almost 2yo grandchild doesn't seem to be picking up alot, she understands but isn't really talking much, so she needs people to talk to her more and use play therphy. Languange acqusition is easier under the age of 5. I read that back in 1990 and it is still true today.

I use the Freedom and having worn hearing aides from about 13 yo's I can tell you that nothing that came through the HA's ever came through with the degree of clarity as my CI processor gives. I've even been encourageing my mother to get tested, it's really that much better.

don't look down on you because you chose a different path, in fact knowing the frustrations of not heraing and understanding those around me most of the time I can understand why you did, if you ever have to have any type of surgery again be sure to talk to the anesthesiologist to make sure that he/she knows what happened the last time you were sedated. It could be you weren't given enough or the type of anesthesia they used doesn't work on you. (chidren with down syndrome are not given a specific anestetic because many of them have had post op problems with that particular one)

I and many like me chose the path that gives us much easier access to the world around us, and I'm happy for those children who are being given that chance to by their parents. Like you I would like to encourage those parents to be aware that they should be ready to change paths if the one they begin on isn't working. (behavior in little ones is a good clue to things not going very well)

The children you see are not failures, they have infact gotten something out of the implant, just not as much as we would wish, the failure could be in their school systems and because their parents were to trusting, believe me I have had more problems with items in an iep that were not followed and the fights to get them done then I really want to remember. Even deaf schools are not always great at following through on the things in the iep. Parent education is a must and if the deaf community really wants to get involved it's not going to be by telling parents they are wrong to take the CI path. The best way to insure fewer 'failures' or kids falling to far behind would be to develope informational packets on what to look for to determine if thier child is in need of an additional approach to communication. Rather then accusing those of us who speak of being audist because we understand it's advantages it would be better to work toward total communciation for the toddlers who are being implanted so they DON't fall behind. Being auditory is not a bad thing, it does make life much eaiser to be deaf and be able to hear (via CI) .

I always found school exceptionally boring since even with HA's I missed alot. I managed to get through with a 2.5 or something over the last four years of school. Band was great, partying with my buddies was great. Sneaking around smoking cigs. was great. But school was a bore. (tried a class a few years ago an online one, it's still a bore, but the ability of the young people to write decent sentences is actually pretty poor. It was a reading and writing critically class.

According to my 22 yo the nicest thing about having HA's (and she was more successful with them then I) was being able to turn them off when certain teachers started yelling cause one of the guys smarted off yet again. :)
 
jag said:
Actually Shel what I see as a deaf/hoh orally raised now CI person is some people who embrace deaf culture saying that those who's children are successful without using ASL, and whom know quite of few other kids their childrens' age who are successfully using CI without ASL being told by certain elements that they are just audist.

Cloggy is not an Audist, as someone always seems to insist. If that person or persons ever really read what Cloggy has said they would have read the part where he said his DAUGHTER is the one who is dropping the sign language, not her family members. They are just following her lead. I'm not sure about Rick, I assume they developed or used over time some type of visual language when the CI was/is off, it also sounds like they worked hard to make their daughters oral language a success at a very early age. BTW, it is not that bad of a thing if they talked talked and talked some more, encourageed proper pronunciation when their daughter was a toddler, it's the way that language is learned. At this time I see my almost 2yo grandchild doesn't seem to be picking up alot, she understands but isn't really talking much, so she needs people to talk to her more and use play therphy. Languange acqusition is easier under the age of 5. I read that back in 1990 and it is still true today.

I use the Freedom and having worn hearing aides from about 13 yo's I can tell you that nothing that came through the HA's ever came through with the degree of clarity as my CI processor gives. I've even been encourageing my mother to get tested, it's really that much better.

don't look down on you because you chose a different path, in fact knowing the frustrations of not heraing and understanding those around me most of the time I can understand why you did, if you ever have to have any type of surgery again be sure to talk to the anesthesiologist to make sure that he/she knows what happened the last time you were sedated. It could be you weren't given enough or the type of anesthesia they used doesn't work on you. (chidren with down syndrome are not given a specific anestetic because many of them have had post op problems with that particular one)

I and many like me chose the path that gives us much easier access to the world around us, and I'm happy for those children who are being given that chance to by their parents. Like you I would like to encourage those parents to be aware that they should be ready to change paths if the one they begin on isn't working. (behavior in little ones is a good clue to things not going very well)

The children you see are not failures, they have infact gotten something out of the implant, just not as much as we would wish, the failure could be in their school systems and because their parents were to trusting, believe me I have had more problems with items in an iep that were not followed and the fights to get them done then I really want to remember. Even deaf schools are not always great at following through on the things in the iep. Parent education is a must and if the deaf community really wants to get involved it's not going to be by telling parents they are wrong to take the CI path. The best way to insure fewer 'failures' or kids falling to far behind would be to develope informational packets on what to look for to determine if thier child is in need of an additional approach to communication. Rather then accusing those of us who speak of being audist because we understand it's advantages it would be better to work toward total communciation for the toddlers who are being implanted so they DON't fall behind. Being auditory is not a bad thing, it does make life much eaiser to be deaf and be able to hear (via CI) .

I always found school exceptionally boring since even with HA's I missed alot. I managed to get through with a 2.5 or something over the last four years of school. Band was great, partying with my buddies was great. Sneaking around smoking cigs. was great. But school was a bore. (tried a class a few years ago an online one, it's still a bore, but the ability of the young people to write decent sentences is actually pretty poor. It was a reading and writing critically class.

According to my 22 yo the nicest thing about having HA's (and she was more successful with them then I) was being able to turn them off when certain teachers started yelling cause one of the guys smarted off yet again. :)
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:gpost:

Just wanted to clarify some things...I dont have any issues with the CI..just the issues with putting young deaf children whether they have a CI or not in an oral-only environment and waiting to see if they will do well with spoken language or not. That's what I see what happened with my students coming from the other schools. Yes, the schools and parents are at fault too for letting them fall so far behind that it is almost impossible for them to catch up. Doesnt matter if they have a CI or not. That's my only issue..

Also, I dont care what Cloggy and Rick say...they said some things in the past that put down my experiences by telling me that I need to look beyond or that I need to do this or that. That's not what I am here for..I am always here for the deaf children who fell thru the cracks. That's what I meant by those who accuse me of things that I dont even have issues with. I have always said it is none of my business if the parents implant their children and I wonder how many times do I have to repeat that. It is not the CI..it is the language development and the uncertainity of how much the children can process spoken language when they are developing language since they are unable to tell us how much they can understand or dont understand. Is that hard for those to understand why I feel this way?

I have already said if parents want to take the oral-only route, I wont stand in their way but I just dont feel safe with the oral-only route with very young deaf or hoh children. Also, there are the issues of the children fooling everyone about how everything is fine in school when it really isnt for fear of not wanting to be singled out and then having to pay the price socially and emotionally later. Too many public school teachers do not know anything about deaf issues and dont know how to recognize nor address them. Most of the time the parents dont either. The parents who come here seem very educated and aware but what about those who are out there who dont get themselves educated about deaf issues.
 
jag said:
Cloggy is not an Audist, as someone always seems to insist. If that person or persons ever really read what Cloggy has said they would have read the part where he said his DAUGHTER is the one who is dropping the sign language, not her family members. They are just following her lead.
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That reminds me. I was just reading the abstract of a study on Pubmed today that found that movements toward oral language after the CI tended to be child led.

Parents' Views on Changing Communication After Cochlear Implantation

We sent questionnaires to families of all 288 children who had received cochlear implants at one center in the United Kingdom at least 5 years previously. Thus, it was a large, unselected group. We received 142 replies and 119 indicated that the child and family had changed their communication approach following cochlear implantation. In 113 cases the change was toward spoken language and in 6 cases the change was toward signed communication. Parents were asked to respond to statements about communication with their deaf child, and their responses indicated that parents wanted the most effective means of communication and one that their child would find most useful in the future. Findings that emerged from parents' comments indicated that the change toward greater use of spoken language was child-led and driven by increased audition. Parents also valued the contribution of signed communication.
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Parents' Views on Changing Communication After Coc...[J Deaf Stud Deaf Educ. 2007] - PubMed Result
 
shel90 said:
I have already said if parents want to take the oral-only route, I wont stand in their way but I just dont feel safe with the oral-only route with very young deaf or hoh children.
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Yes, I understand that. It's good to have both, so that language development proceeds and the child can choose as they get older what they prefer and so that should a CI not work out for whatever reason, there is no interuption in development.
 
jag said:
Actually Shel what I see as a deaf/hoh orally raised now CI person is some people who embrace deaf culture saying that those who's children are successful without using ASL, and whom know quite of few other kids their childrens' age who are successfully using CI without ASL being told by certain elements that they are just audist.

Cloggy is not an Audist, as someone always seems to insist. If that person or persons ever really read what Cloggy has said they would have read the part where he said his DAUGHTER is the one who is dropping the sign language, not her family members. They are just following her lead. I'm not sure about Rick, I assume they developed or used over time some type of visual language when the CI was/is off, it also sounds like they worked hard to make their daughters oral language a success at a very early age. BTW, it is not that bad of a thing if they talked talked and talked some more, encourageed proper pronunciation when their daughter was a toddler, it's the way that language is learned. At this time I see my almost 2yo grandchild doesn't seem to be picking up alot, she understands but isn't really talking much, so she needs people to talk to her more and use play therphy. Languange acqusition is easier under the age of 5. I read that back in 1990 and it is still true today.

I use the Freedom and having worn hearing aides from about 13 yo's I can tell you that nothing that came through the HA's ever came through with the degree of clarity as my CI processor gives. I've even been encourageing my mother to get tested, it's really that much better.

don't look down on you because you chose a different path, in fact knowing the frustrations of not heraing and understanding those around me most of the time I can understand why you did, if you ever have to have any type of surgery again be sure to talk to the anesthesiologist to make sure that he/she knows what happened the last time you were sedated. It could be you weren't given enough or the type of anesthesia they used doesn't work on you. (chidren with down syndrome are not given a specific anestetic because many of them have had post op problems with that particular one)

I and many like me chose the path that gives us much easier access to the world around us, and I'm happy for those children who are being given that chance to by their parents. Like you I would like to encourage those parents to be aware that they should be ready to change paths if the one they begin on isn't working. (behavior in little ones is a good clue to things not going very well)

The children you see are not failures, they have infact gotten something out of the implant, just not as much as we would wish, the failure could be in their school systems and because their parents were to trusting, believe me I have had more problems with items in an iep that were not followed and the fights to get them done then I really want to remember. Even deaf schools are not always great at following through on the things in the iep. Parent education is a must and if the deaf community really wants to get involved it's not going to be by telling parents they are wrong to take the CI path. The best way to insure fewer 'failures' or kids falling to far behind would be to develope informational packets on what to look for to determine if thier child is in need of an additional approach to communication. Rather then accusing those of us who speak of being audist because we understand it's advantages it would be better to work toward total communciation for the toddlers who are being implanted so they DON't fall behind. Being auditory is not a bad thing, it does make life much eaiser to be deaf and be able to hear (via CI) .

I always found school exceptionally boring since even with HA's I missed alot. I managed to get through with a 2.5 or something over the last four years of school. Band was great, partying with my buddies was great. Sneaking around smoking cigs. was great. But school was a bore. (tried a class a few years ago an online one, it's still a bore, but the ability of the young people to write decent sentences is actually pretty poor. It was a reading and writing critically class.

According to my 22 yo the nicest thing about having HA's (and she was more successful with them then I) was being able to turn them off when certain teachers started yelling cause one of the guys smarted off yet again. :)
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If you will go back and check extensive postings, I think you will find several members who agree that cloggy's remarks and attitudes are audist in nature.
 
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