Cochlear implant mends lives

[rick48]

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?

I know for my wife and I it was our personal observations of actual ci users both adults and children and our discussions with adult users and parents of ci children.

Advertising and marketing played absolutely no role whatsover in our decision. The ci surgeons we talked to made it clear that the decision was ours and ours alone to make, they did not try to convince us to have the surgery for our child. Also the implant team, especially our audiologist, downplayed and understated the benefits he thought our daughter could derive form the implant. At all times they were professional and above board in dealing with us?
Rick

 

[rick48]

This has, for the most part, been a very enlightening and educational exchange of ideas. It is refreshing to be able to engage in an intelligent discussion with those of differing viewpoints in order to increase everyone's tolerance and understanding. Why don't we try to keep it that way? Let's stick to civil discussion of the issues without accusation and personal insult.

I agree that, for the most part, this is an interesting topic and discussion but instead of singling me out for admonishment, I wish you had practiced what you now preach in your call for tolerance and understanding before you launched into a totally unprovoked attack upon my relationship with my child. So perhaps you should demonstrate your desire for tolerance and understanding and an end to accusation and personal insult by offering an apology?

 

[Cloggy]

............ weren't for the fact that the devise is marketed to hearing parents with the attitude of being a scientific miracle that will allow their child to integrate into hearing society without difficulty--somethig that has never been achieved in the past.

Maybe not fore some, but in a way it IS a miracle. And integration in the hearing world is something that is done by many deaf children nowadays, that grow up with CI.

............ Since 90% of deaf children are born to hearing parents who have never had any contact with deafness and are very unsure about which way to turn, it is a very effective form of advertising. How that child fares later in life is not a concern--or doesn't appear to be--to the manufacturer. Just as strict oralism was once touted as the miracle that would save the poor individual from their deafness, CI is now being touted under the same flag.

Except that this time daef people are able to hear. It is a different ballgame compared to 20+ years ago, and totally incomparable to 100+ years ago.
With more than 90% of the deaf children born from hearing parents, who else would the industry turn to? These parents (like me) have no previous knowledge of deafness. These parents live in a world with sound. Deafness is something foreign to them.
But fear of deafness is not the reason for choosing the road where the child can hear sounds, it is the knowledge of sounds that is driving them.
Communication, music, nature.... who wouldn't want their child to experience that.
Previously, oral or sign would still mean "no sound" and parents listened to the experts (who sometimes were wrong) before making a decision. Nowadays there's a third choice, that actually does not exclude the previous two!

The CI is developed with the best intentions. When you suggest that they just want to dump their products, and do not care about future development, then I believe you are wrong. Everything (in combination with willingnes and effort of the person with CI) is done to make it a success.
When for some reason CI is not the solution, other people will step in to help.
People like you and Shel and many others. Just like you will help deaf people that never had a CI and have similar problems. Problems with communication.
Don't blame the CI-manufacturers when CI "doesn't work" because technically, it does work.
Often the problem lies with the implantee. Being deaf too long, thinking hearing means understanding, not accepting that CI means hard work as well.... etc.

............ I don't really think it is an issue of expecting the majority to learn a minority language. It is more the issue of allowing the minority to retain their language and passit on to future generations belonging to that minority.

"Allowing" would sugest that there is concern from the majority, and basically, most of the majority has no clue. It is almost up to the government to protect the minority.
I mean; are we really concerned that Chinese people in the USA retain their language??? I really don't think about it... and I really do not want 1 hour of chinese on our schools just for the Chinese minority.

 

[Cloggy]

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?
........
Rick

For us, we heared about CI quite a while after we heared Lotte was deaf. We started sign, and intended to learn a fifth language.

When we learned about CI, Lotte still had to go with the HA's, and only 6-8 months later we were told that she would be a candidate. We investigated ourself and allready had met with children with CI. Also we saw children before and after they got CI and noticed the difference CI made on them. At all times, we saw many good experiences with CI.
I have also seen the opposite, but I cannot blame it on CI. I see children that were a bit older when they got CI and continue with sign, their speech not being developed. The parents continuing using sign does not get the child out of this..

In all, we have never been pressured into anything. CI sells itself. There's really no other need for the manufacturers to inform people that it is available.

 

[Hear Again]

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?

I chose to receive CIs based on two frightening incidents I experienced.

The first incident involved being locked inside a building because I did not hear people leave. If it were not for a back entrance to this particular building, I would have had to call 911 for the police to unlock the front door and let me out.

The second incident involved my mother who was terminally ill with cancer. One night she needed immediate medical attention. When I called 911, I had a sick feeling come over me because I knew I wouldn't be able to hear the operator. After calling 911, I repeatedly indicated that I was deafblind and needed an ambulance for my mother. I left the phone on the hook (so the operator could hear what was happening on my end of the line), went over to the apartment door and placed my hand on it so I knew when the paramedics arrived. Once they did, I had no idea what was happening to my mother because I couldn't see or hear. I can't remember the last time I felt so helpless. Later that evening I called the hospital through relay to find out how my mother was doing. A very rude nurse answered the phone and told me she "didn't have time to use relay." Fortunately when I called back, another nurse answered the phone and was more than happy to give me the information I requested.

I also had a variety of close calls with traffic because of my severe-profound hearing loss. Being totally blind, I found it difficult to travel safely and required the assistance of pedestrians and business owners in order to cross the street.

Advertisement from the 3 CI companies had absolutely nothing to do with my decision to be implanted. Since I had participated on a listserv for CI users 6 months prior to receiving my CIs, I already knew about the variability in success rates among CI users. My audi also explained that all of the 3 CI brands were excellent and that there were many happy CI users who used all three brands. (The only thing my CI audi told me in regards to brands was the fact that some CI users do not prefer or perform well with higher rates of stimulation.)

I chose my CI brand based on the following criteria:

1. Cochlear has been in the CI industry for over 20 years and only focuses on cochlear implants.

2. Features: disposable batteries, ease of use with BTE processor controls, ability to have over 80,000 map combinations for programming, water resistance.

3. Excellent customer service. Cochlear always answered my questions promptly and professionally by e-mail within 24 hours.

4. Cochlear's Volunteer Advocate Program which pairs new CI candidates with experienced CI users. I found it especially helpful to talk to other CI users in my area who had a similar hearing history to mine.

The decision to receive a CI was not one I made lightly. In fact, my CI application spent nearly a month sitting in a drawer. I also sought the recommendation of 3 different audis (my former HA audi who fitted me with my first pair of HAs, university audi and current HA audi at the time). All of them looked at my audiogram and said they thought I'd be an excellent candidate.

Being implanted was one of the best decisions I've ever made for myself. Even though I know I can successfully live without hearing (I did this for 10 years prior to receiving my CIs), there were other factors (personal safety) which had a major impact on my choice to receive CIs.

If I had to do it all over again, I would in a heartbeat!

 

[jillio]

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?

I know for my wife and I it was our personal observations of actual ci users both adults and children and our discussions with adult users and parents of ci children.

Advertising and marketing played absolutely no role whatsover in our decision. The ci surgeons we talked to made it clear that the decision was ours and ours alone to make, they did not try to convince us to have the surgery for our child. Also the implant team, especially our audiologist, downplayed and understated the benefits he thought our daughter could derive form the implant. At all times they were professional and above board in dealing with us?
Rick

I find it difficult to believe that you, after observing CI users, approached the surgeon and the audi, and the other professionals concerned. You weren't refered by anyone in the medical field, but sought out the CI option all on your own. And if advertising wasn't involved at all, how is it that you came to be aware of the CI?

 

[jillio]

I agree that, for the most part, this is an interesting topic and discussion but instead of singling me out for admonishment, I wish you had practiced what you now preach in your call for tolerance and understanding before you launched into a totally unprovoked attack upon my relationship with my child. So perhaps you should demonstrate your desire for tolerance and understanding and an end to accusation and personal insult by offering an apology?

I singled you out because your post was the first one to bring derision and anymosity into what had previously been a reasonable discussion.

 

[jillio]

Maybe not fore some, but in a way it IS a miracle. And integration in the hearing world is something that is done by many deaf children nowadays, that grow up with CI.
Yes, but integration on THEIR own terms, not on the terms of the hearing. To force integration ont he terms of the hearing is exactly what stigmatizes and creates the impression of deaf=inferior.

Except that this time daef people are able to hear. It is a different ballgame compared to 20+ years ago, and totally incomparable to 100+ years ago.
The majority of deaf people have always had some residual hearing.
Even many profoundly deaf individuals retain some residual hearing--residual hearing that is destroyed by the way, by implantation. And the ballgame is not different at all. If it were so different we would not continue to experience the sam problems we are experiencing int he education of our deaf students. The only thing that has changed is the CI. The oralis attitude is still handicapping deaf children. The only thing that is changing is now we have a population of deaf children have CI and are undereducated instead of without CI and undereducted. How is that progress? Speech skills and sound perception alone do not guarantee a successful and independaent life. Education does that. And literacy rates are continuing to lag behind thanks to the resurgence in the oralist stance.
With more than 90% of the deaf children born from hearing parents, who else would the industry turn to? These parents (like me) have no previous knowledge of deafness. These parents live in a world with sound. Deafness is something foreign to them.

Exactly! And that makes them an easy target. It is preying on avunerabiltity and misuse of the perceived expert status of the medical community. You are quick to believe those in position of authority--we all are. And that is especially true when one does not possess the knowledge to properly judge the credibility the the so called authority. The medical community is not expert in the questions of deafness. They are perhaps expert in physiology--but as for consequence they are woefully ignorant.
But fear of deafness is not the reason for choosing the road where the child can hear sounds, it is the knowledge of sounds that is driving them.
Communication, music, nature.... who wouldn't want their child to experience that.
Previously, oral or sign would still mean "no sound" and parents listened to the experts (who sometimes were wrong) before making a decision. Nowadays there's a third choice, that actually does not exclude the previous two!

And that is incorrect as well. There has been previously the HA--remember the HA? Lotte used it, many deaf people continue to use it. Therefore, there was sound for her and for the millions of deaf people who use HA. Once implantation has been accomplishedhowever, the natural residual hearing that wass made useful by HA is destroyed, and you create a situation of no sound. The CI is developed with the best intentions. When you suggest that they just want to dump their products, and do not care about future development, then I believe you are wrong. Everything (in combination with willingnes and effort of the person with CI) is done to make it a success.
Good intentions do not always achieve good results. This is a sad fact of life.
When for some reason CI is not the solution, other people will step in to help.
People like you and Shel and many others. Just like you will help deaf people that never had a CI and have similar problems. Problems with communication.
Don't blame the CI-manufacturers when CI "doesn't work" because technically, it does work.

Often the problem lies with the implantee. Being deaf too long, thinking hearing means understanding, not accepting that CI means hard work as well.... etc.

Once again, blaming the deaf for their deafness. You can't live up to the hearing standards of the way a CI implantee should perform because their is something wrong with you. You are inferior. You are less than adequate. This is the most destructive attitude contained in the oralist philosophy, and in the past this very same attitude has created a situation of oppression and discrimination within the larger society. Why would you want to continue to hold to a way of thinking that is so destructive for deaf people when your own daughter is deaf?


"Allowing" would sugest that there is concern from the majority, and basically, most of the majority has no clue. It is almost up to the government to protect the minority.
It doesn't suggest that at all.

I mean; are we really concerned that Chinese people in the USA retain their language??? I really don't think about it... and I really do not want 1 hour of chinese on our schools just for the Chinese minority.

Sorry, but the analogy doesn't hold. This is a fallicous argument.

 

[neecy]

I just wanted to say that you don't have to be bombarded by advertising to become aware of CI's. My parents first learned abou them back in the early 1980's because of science articles in magazines and TV shows - I suppose that *could* be termed advertising, but if somebody does research on a subject and writes about it, its not necessarily advertising it. My parents were the ones to approach my audie about me getting a CI - but the technology back then was still too new.

Nowadays all you have to do is log online and read from the plethora of websites, journals, scientific papers etc available - you don't NEED to be advertised to to be educated about something.

I find it difficult to believe that you, after observing CI users, approached the surgeon and the audi, and the other professionals concerned. You weren't refered by anyone in the medical field, but sought out the CI option all on your own. And if advertising wasn't involved at all, how is it that you came to be aware of the CI?

 

[shel90]

Maybe not fore some, but in a way it IS a miracle. And integration in the hearing world is something that is done by many deaf children nowadays, that grow up with CI.
Except that this time daef people are able to hear. It is a different ballgame compared to 20+ years ago, and totally incomparable to 100+ years ago.
With more than 90% of the deaf children born from hearing parents, who else would the industry turn to? These parents (like me) have no previous knowledge of deafness. These parents live in a world with sound. Deafness is something foreign to them.
But fear of deafness is not the reason for choosing the road where the child can hear sounds, it is the knowledge of sounds that is driving them.
Communication, music, nature.... who wouldn't want their child to experience that.
Previously, oral or sign would still mean "no sound" and parents listened to the experts (who sometimes were wrong) before making a decision. Nowadays there's a third choice, that actually does not exclude the previous two!

The CI is developed with the best intentions. When you suggest that they just want to dump their products, and do not care about future development, then I believe you are wrong. Everything (in combination with willingnes and effort of the person with CI) is done to make it a success.
When for some reason CI is not the solution, other people will step in to help.
People like you and Shel and many others. Just like you will help deaf people that never had a CI and have similar problems. Problems with communication.
Don't blame the CI-manufacturers when CI "doesn't work" because technically, it does work.
Often the problem lies with the implantee. Being deaf too long, thinking hearing means understanding, not accepting that CI means hard work as well.... etc.

Geez...just like it was my fault for not understanding everything while I was growing up and getting detention slips or written up reports for not paying attention. That can DESTROY a deaf person's self esteem BIG time for something they CANT help! SAME THING GOES FOR THE CI USER WHO DIDNT GET BENEFITS FROM THEIR CIs!!!

"Allowing" would sugest that there is concern from the majority, and basically, most of the majority has no clue. It is almost up to the government to protect the minority.
I mean; are we really concerned that Chinese people in the USA retain their language??? I really don't think about it... and I really do not want 1 hour of chinese on our schools just for the Chinese minority.

This is why I am SO against the oral-only philisophy...in fact, I despite it.

 

[Cloggy]

...............
Often the problem lies with the implantee. Being deaf too long, thinking hearing means understanding, not accepting that CI means hard work as well.... etc.
..................

.................
Geez...just like it was my fault for not understanding everything
..............
This is why I am SO against the oral-only philisophy...in fact, I despite it.

.........Once again, blaming the deaf for their deafness. You can't live up to the hearing standards of the way a CI implantee should perform because their is something wrong with you. ........

Funny, must be my lack of English etc..

I said "problem" ... Shel translates that into "fault" and Jillio into "blaming"

I'm not blaming, or saying it's someone's fault, I am just making a difference between "a CI not working" and "CI not working for the implantee"......

The CI manufacturers and audiologists make sure that the CI works. That's 5% of the work done. Then the other 95% has to kick in. Part of that is hearing history, (pre/post lingual deafend) part is the body (nerve could be bad) part is willingness to work, and I am sure there are more reasons.....

But how is the manufacturer to blame for failures when the CI does what it is supposed to do?

 

[Cloggy]

This is why I am SO against the oral-only philisophy...in fact, I despite it.

99+ % of the world is "oral-only"... It's human nature!

 

[Cloggy]

Cloggy: I mean; are we really concerned that Chinese people in the USA retain their language??? I really don't think about it... and I really do not want 1 hour of chinese on our schools just for the Chinese minority.

Sorry, but the analogy doesn't hold. This is a fallicous argument.

Nice statement!?.... Why?

 

[shel90]

99+ % of the world is "oral-only"... It's human nature!

yea and deaf children suffer educationally cuz of that view...need to adapt that view and meet deaf children's needs for educational purposes only. Is that so hard to do?

 

[jillio]

Funny, must be my lack of English etc..

I said "problem" ... Shel translates that into "fault" and Jillio into "blaming"

I'm not blaming, or saying it's someone's fault, I am just making a difference between "a CI not working" and "CI not working for the implantee"......

The CI manufacturers and audiologists make sure that the CI works. That's 5% of the work done. Then the other 95% has to kick in. Part of that is hearing history, (pre/post lingual deafend) part is the body (nerve could be bad) part is willingness to work, and I am sure there are more reasons.....

But how is the manufacturer to blame for failures when the CI does what it is supposed to do?

No it is not your lack of language, it is the fact that you operationally define working as becoming oral, and imply that those who don't are responsible for their own problems.

 

[jillio]

99+ % of the world is "oral-only"... It's human nature!

You got that information very, very incorrect, cloggy. Please don't start posting made up statistics again. We had made some progress in keeping these discussions reasonable.

 

[jillio]

Cloggy: I mean; are we really concerned that Chinese people in the USA retain their language??? I really don't think about it... and I really do not want 1 hour of chinese on our schools just for the Chinese minority.



Nice statement!?.... Why?

Because you have used an analogy that compares two things that are alike in certain respects, and consequently suggest that sicne they share superficial characteristics, they share other characteristics as well. When you refer to Chinese retaining their language, you are refering to hearing Chinese. We are discussing a deaf population, and they share no more characteristics with the hearing Chinese population that they do with the hearing American poluation when applied to the issue of language.

 

[jillio]

yea and deaf children suffer educationally cuz of that view...need to adapt that view and meet deaf children's needs for educational purposes only. Is that so hard to do?

Not to mention the fact that those are totally false statistics and assumptions.

 

[Cloggy]

Originally Posted by Cloggy
Maybe not fore some, but in a way it IS a miracle. And integration in the hearing world is something that is done by many deaf children nowadays, that grow up with CI.
Yes, but integration on THEIR own terms, not on the terms of the hearing. To force integration ont he terms of the hearing is exactly what stigmatizes and creates the impression of deaf=inferior.
More and more I get the feeling it's self-inflicted by those who feel that way

Except that this time deaf people are able to hear. It is a different ballgame compared to 20+ years ago, and totally incomparable to 100+ years ago.
The majority of deaf people have always had some residual hearing.
Even many profoundly deaf individuals retain some residual hearing--residual hearing that is destroyed by the way, by implantation. And the ballgame is not different at all. If it were so different we would not continue to experience the sam problems we are experiencing int he education of our deaf students. The only thing that has changed is the CI. The oralis attitude is still handicapping deaf children. The only thing that is changing is now we have a population of deaf children have CI and are undereducated instead of without CI and undereducted. How is that progress? Speech skills and sound perception alone do not guarantee a successful and independaent life. Education does that. And literacy rates are continuing to lag behind thanks to the resurgence in the oralist stance.
It is progress because there is a generation growing up that is actually making a difference. A generation that is able to be part of both worlds. And I am not talking about teens that finally decide to "get CI". I am talking about children that grow up with CI..

With more than 90% of the deaf children born from hearing parents, who else would the industry turn to? These parents (like me) have no previous knowledge of deafness. These parents live in a world with sound. Deafness is something foreign to them.
Exactly! And that makes them an easy target. It is preying on avunerabiltity and misuse of the perceived expert status of the medical community. You are quick to believe those in position of authority--we all are. And that is especially true when one does not possess the knowledge to properly judge the credibility the the so called authority. The medical community is not expert in the questions of deafness. They are perhaps expert in physiology--but as for consequence they are woefully ignorant.
You say "Easy target", I don't feel that way. And preying on vulnearability.... you should hear Deaf radicals talk to hearing parents about "not loving their child", "hating deafness" etc. True. Hearing parents are very vulnerable, and I have seen it being misused nore by Deaf radicals than by any other group.
The medical community does not need to be an expert in d/Deafness. Why should they??

But fear of deafness is not the reason for choosing the road where the child can hear sounds, it is the knowledge of sounds that is driving them.
Communication, music, nature.... who wouldn't want their child to experience that.
Previously, oral or sign would still mean "no sound" and parents listened to the experts (who sometimes were wrong) before making a decision. Nowadays there's a third choice, that actually does not exclude the previous two!
And that is incorrect as well. There has been previously the HA--remember the HA? Lotte used it, many deaf people continue to use it. Therefore, there was sound for her and for the millions of deaf people who use HA. Once implantation has been accomplishedhowever, the natural residual hearing that wass made useful by HA is destroyed, and you create a situation of no sound.
Residual hearing that does not help the slightest is not lost when going from HA to CI. Both systems rely on technology and when technology fails, you won't hear.... Somtimes "residual hearing" is overrated.

The CI is developed with the best intentions. When you suggest that they just want to dump their products, and do not care about future development, then I believe you are wrong. Everything (in combination with willingnes and effort of the person with CI) is done to make it a success.
Good intentions do not always achieve good results. This is a sad fact of life.
True.... I have seen good intentions with continuing sign after the child received CI... It happens both ways.

When for some reason CI is not the solution, other people will step in to help.
People like you and Shel and many others. Just like you will help deaf people that never had a CI and have similar problems. Problems with communication.
Don't blame the CI-manufacturers when CI "doesn't work" because technically, it does work.

Often the problem lies with the implantee. Being deaf too long, thinking hearing means understanding, not accepting that CI means hard work as well.... etc.

Oef...

 

[shel90]

No it is not your lack of language, it is the fact that you operationally define working as becoming oral, and imply that those who don't are responsible for their own problems.

Right...it was not us saying that Cloggy blamed us but by his stating that "the problem lies with the implantee" just was how I was blamed for some situations that I couldnt help..it is the general view that this or that failed cuz the problem was the person not anyone else and that doesnt help at all...instead of saying that should say "the problem is the current approach that is being used for the person."