You cannot hear with CI .. ??

[rockdrummer]

Rockdrummer,

Good points. Your experiences during the ci screening process were similar to ours. I think a lot of parents choose a path initially based on a lot of factors and variables unique to their situation. I also think that the decision is not one that should be set in concrete but rather a fluid one as you have to constantly evaluate and re-assess how your child is doing and be willing to utilize other methods if the one you chose is not working for your child. Its not about right or wrong, its about acting in the best interests of your child.
Rick

and if I may add to keep investigating options until you hit on one that works. We are constantly making adjustments based on results. It's discussed at each IEP and adjustments are made and monitored. I just hope we hit on something that works because he is lerning at a very slow pace right now and I have to believe the ability to communicate is a major factor.

 

[Cloggy]

I'm no expert but as I see it the ability to communicate with the hearing world (the majority) and all of the benefits that come with that would be in the interest of the individual. If you don't assimilate with the majority you are only isolating yourself which can actually lead to problems in the areas you mentioned. IMHO.

Good point.

No need to be H about it....

 

[shel90]

I'm no expert but as I see it the ability to communicate with the hearing world (the majority) and all of the benefits that come with that would be in the interest of the individual. If you don't assimilate with the majority you are only isolating yourself which can actually lead to problems in the areas you mentioned. IMHO.

Ok..I have the skills to communicate with the hearing world but when I interact with them, I am lost constantly and feel more isolated so that is what Jillo was referring to. Maybe since since the children of the parents here are so successful, it is probably hard for any of u to imagine that there are actual deaf people with excellent oral skills but still struggle to assimilate themselves with the "majority". Pls do not say that we didnt try hard enough..I have had that accusation thrown at me so many times and it just made me feel even less motivated to interact with the "majority." If your children feel completely at ease in the hearing world, more power to them. Nothing wrong with that but what I hate is that the rest of us are not really taken into consideration. That's how I am feeling from reading the posts.

 

[Cloggy]

Ok..I have the skills to communicate with the hearing world but when I interact with them, I am lost constantly and feel more isolated so that is what Jillo was referring to. Maybe since since the children of the parents here are so successful, it is probably hard for any of u to imagine that there are actual deaf people with excellent oral skills but still struggle to assimilate themselves with the "majority". Pls do not say that we didnt try hard enough..I have had that accusation thrown at me so many times and it just made me feel even less motivated to interact with the "majority." If your children feel completely at ease in the hearing world, more power to them. Nothing wrong with that but what I hate is that the rest of us are not really taken into consideration. That's how I am feeling from reading the posts.

I thought it was you that said that when thinking of CI, you think of children.

That's the same with me. I mainly relate CI with children, my daughter and other children I have met.
Most of the adults with CI I have met here, and their experiences are a look in the future for me.

So I can understand your disappointment with lack of understanding regarding "your" group, but I guess it comes with the territory.
On the other hand, your experiences are also a look for me in the other future my daughter could have had. Had we not chose for CI, she also had to struggle, no matter how supportive we are as parents.. Not that she doesn't have to struggle now, but the proces she is going through now is a natural way of learning. She doesn't even know it herself.... she's like any 2 or 3-year old, learning sounds and language.... except... she's 4, turning 5.

 

[shel90]

Damn..I thought this was the auditory-therapy research thread..my bad.:rl:

 

[shel90]

I thought it was you that said that when thinking of CI, you think of children.

That's the same with me. I mainly relate CI with children, my daughter and other children I have met.
Most of the adults with CI I have met here, and their experiences are a look in the future for me.

So I can understand your disappointment with lack of understanding regarding "your" group, but I guess it comes with the territory.
On the other hand, your experiences are also a look for me in the other future my daughter could have had. Had we not chose for CI, she also had to struggle, no matter how supportive we are as parents.. Not that she doesn't have to struggle now, but the proces she is going through now is a natural way of learning. She doesn't even know it herself.... she's like any 2 or 3-year old, learning sounds and language.... except... she's 4, turning 5.

I know adults that have CIs but no longer use them. They got tired of them not working to meet their needs. what that means.

 

[Cloggy]

I know adults that have CIs but no longer use them. They got tired of them not working to meet their needs. what that means.

That's another argument I hear a lot.... CI doesn't work because "I know about people that don't use them any more...."
(That's not what you said... it's something I get a lot on the "other side".)

I really would like to see some research regarding WHY they chose CI, and HOW they worked to make it work...
I'm sure there are people that just cannot manage having all the sound around them, but I have a feeling that others chose CI as a gadget. Just to try out, just to hear sound, but never realising that it requires a lot of work.
And in this world of "instant gratification"... working for success is sometimes just too much trouble...
Again, I'm sure there are people where it just doesn't "work", but when I read a post where someone says "CI sucks because there's soo many terrible sounds.." then I guess that the CI works, just the attitude sucked....

Just my $ worth (NOK 6 in Norway..)

 

[shel90]

That's another argument I hear a lot.... CI doesn't work because "I know about people that don't use them any more...."
(That's not what you said... it's something I get a lot on the "other side".)

I really would like to see some research regarding WHY they chose CI, and HOW they worked to make it work...
I'm sure there are people that just cannot manage having all the sound around them, but I have a feeling that others chose CI as a gadget. Just to try out, just to hear sound, but never realising that it requires a lot of work.
And in this world of "instant gratification"... working for success is sometimes just too much trouble...
Again, I'm sure there are people where it just doesn't "work", but when I read a post where someone says "CI sucks because there's soo many terrible sounds.." then I guess that the CI works, just the attitude sucked....

Just my $ worth (NOK 6 in Norway..)

True..could be. I do ask them and they always say "The CI didnt work or The CI didnt meet my expectations." Before joining AD, I took it as that the CI broke down. LOL! But after reading about CIs..now I am wondering what do they mean by the CIs not working. Unfortunately, I dont see those people anymore due to them moving away or losing touch.

 

[rockdrummer]

Ok..I have the skills to communicate with the hearing world but when I interact with them, I am lost constantly and feel more isolated so that is what Jillo was referring to.

I'm just curious Shel, what do you mean by "I am lost constantly"??

 

[shel90]

I'm just curious Shel, what do you mean by "I am lost constantly"??

Well..on a one on one basis, I may get maybe 80% of what the other person is saying but I usually have to ask them to repeat themselves and sometimes the person can't understand my sppech too weel especially if I misprounounce words or talk thru my nose (as I was told) the natural flow of communication gets interrupted and communicating becomes "work" instead of natural and smoothly.

In large groups..even worse cuz I can't keep track of who is saying what so I have to ask who iam most comfortable with usually my husband who is saying what. I don't think it is fair to him because he has to work too. Last night, my in laws took us out for dinner. My husband and in laws sat across from me and they were chatting but I couldn't catch everything being said cuz I can't lipread fast enough to move from one person to another. So I end up just looking at my pager or asking my husband what did they say..especially if someone tells a joke..everyone is laughing. Then my husband will tell me but by the time I got the joke interpreted for me, the moment where everyone laughed together has passed and iam laughin alone. It sucks big time. I usually sign to my husband and he would interpret to his parents what iam saying but I wanted to try to talk to them directly cuz they were nice enough to take us out for my bday. So I was telling them jokes but they would look confused and ask my husband what did I say cuz they cudnt understand me in the noisy environment.

Yes, it was a nice time and no, I wasn't frustrated with the communication barrier cuz iam used to it. If I did that full time 24/7, u bet I wud have frustrations levels so high but because I have a good balance between my signing world and oral world, it is not as a big deal anymore. I just can't imagine doing this full time like I did growing up. No wonder I was always feeling frustrated and depressed. I was always having to work hard just to "assimilate" in the hearing world. It is no fun especially if I don't succeed about 90% of the time. Too much for me and once I became fluent in ASL and understood how easy it was to share ideas, thoughts or feelings with others I realized that was how communication is like for hearing people so of course I would gravitate to signing environment than spoken so the goal of assimilating me with the "majority" didn't work. I paid a price for it. Many of my friends went thru the same thing too and ended up learning ASL and avoid oral-only situations as much as they can.

 

[kayla123]

Shel, do you or did you wear hearing aids growing up? Or do you rely on lip reading alone.

 

[rockdrummer]

Thanks Shel. That's what I thought but I wanted to make sure. OK, now that you have said that I am a bit confused..
You said;

Ok..I have the skills to communicate with the hearing world but when I interact with them, I am lost constantly and feel more isolated.

Then you said;

Well..on a one on one basis, I may get maybe 80% of what the other person is saying but I usually have to ask them to repeat themselves and sometimes the person can't understand my sppech too weel especially if I misprounounce words or talk thru my nose (as I was told) the natural flow of communication gets interrupted and communicating becomes "work" instead of natural and smoothly.

So my confusion is that you say you have the skills to communicate with the hearing world but then you say you feel lost because you may only get 80% of what is said.

Shel, this is not to slight you in any way but just an observation based on your comments. I would suggest that if you are only able to communicate 80% of the time that perhaps your skills are not what you state them to be. Or maybe a more accurate statement would be I have the skills to communicate with the hearing world about 80% of the time.

To add to my confusion you then said;

I was always having to work hard just to "assimilate" in the hearing world. It is no fun especially if I don't succeed about 90% of the time.

One statement is a 80% success rate and the other is a 90% failure rate. Those numbers just don't add up. Or perhaps I am misunderstanding something.

I do understand the frustration because I deal with it everyday. It's probably just as tough in terms of communication for a hearing person to assimilate with the deaf world. Many things in life are not easy but we press on for the things that are important to us. I can't tell you the level of frustration for me and my son that is due to our inability to proficiently communicate. It's not for lack of trying and things are getting better but I can tell it's gonna be a long hard road.

It sounds like assimilation for you was also a tough long road and it appears that you still struggle in some areas. I don't believe that your experiences are unique and that many deaf folks probably have similar issues. I also think you would agree that the ability (or inablilty) to communicate is at the root of many of the problems. The feeling of being left out or isolated are a result of the inability to proficiently communicate with others (hearing in this case).

I often wonder exactly how the hearing population would accomidate deafness. I have stated in other threads that expecting the entire hearing world to learn to sign is not a realistic for many reasons as I have stated. So then what is the answer in your opinion? How can we the hearing population accomidate deafness?

When a CI is successful it helps to bridge that communication gap and I have to imagine it would also eliminate many of the issues that you and others speak of regarding education, jobs, safety, social settings and psycological issues.

When its not successful then you obviously have to make other choices and your options may become somewhat limited. If I have misunderstood you in any way please correct me.
Thanks!

 

[jillio]

I dont know if that is going off topic or what but up to u if u want to answer or not. I understand that the parents are told not to expect too much but I am sure deep inside, they kinda do in a way? I probably would if I was a hearing parent who had no knowledge of deafness or deaf culture if my children were recommended for CIs. I am sure I would high hopes inside and keep in there. Did u all have that? Just wondering..

My mom told me that she had high hopes that my brother and I would become "hearing" overnight and that is from HAs..then it was afterwards she realized how hard she had to work with us in developing speech and lipreading skills. She did say the doctors warned her of that but she couldnt help it deep inside.

Sorrryyyy goiinggg offff topic!!!

Its been my experience from both raising a deaf child and interacting with other hearing parents of deaf kids that learning about the nuances of the limitations and accepting them is a process rather than an event.

 

[jillio]

"The ones who dont have HA or CIs have full access to language cuz usually they are from deaf families just like a hearing person from a hearing family"

Yes but you are only talking about sign language when they could possibly also acquire spoken language as well. What about that? Why is the concern limited to the sole acquisition of spoken language and not also the sole acquisition of sign language. After all, I am addressing kids who could benefit from HAs or CIs and their parents are not providing them to these kids.

Full access to L1 language makes acquisition of L2 language much easier.

 

[jillio]

Thanks Shel. That's what I thought but I wanted to make sure. OK, now that you have said that I am a bit confused..
You said;

Then you said;


So my confusion is that you say you have the skills to communicate with the hearing world but then you say you feel lost because you may only get 80% of what is said.

Shel, this is not to slight you in any way but just an observation based on your comments. I would suggest that if you are only able to communicate 80% of the time that perhaps your skills are not what you state them to be. Or maybe a more accurate statement would be I have the skills to communicate with the hearing world about 80% of the time.

To add to my confusion you then said;

One statement is a 80% success rate and the other is a 90% failure rate. Those numbers just don't add up. Or perhaps I am misunderstanding something.

I do understand the frustration because I deal with it everyday. It's probably just as tough in terms of communication for a hearing person to assimilate with the deaf world. Many things in life are not easy but we press on for the things that are important to us. I can't tell you the level of frustration for me and my son that is due to our inability to proficiently communicate. It's not for lack of trying and things are getting better but I can tell it's gonna be a long hard road.

It sounds like assimilation for you was also a tough long road and it appears that you still struggle in some areas. I don't believe that your experiences are unique and that many deaf folks probably have similar issues. I also think you would agree that the ability (or inablilty) to communicate is at the root of many of the problems. The feeling of being left out or isolated are a result of the inability to proficiently communicate with others (hearing in this case).

I often wonder exactly how the hearing population would accomidate deafness. I have stated in other threads that expecting the entire hearing world to learn to sign is not a realistic for many reasons as I have stated. So then what is the answer in your opinion? How can we the hearing population accomidate deafness?

When a CI is successful it helps to bridge that communication gap and I have to imagine it would also eliminate many of the issues that you and others speak of regarding education, jobs, safety, social settings and psycological issues.

When its not successful then you obviously have to make other choices and your options may become somewhat limited. If I have misunderstood you in any way please correct me.
Thanks!

Not to step on shel's toes here, but her reference to 80% was regarding comprehension of language and communication. Her reference to 90% was in regard to asimmilation, and that would include behaviors, interpretations, and undertanding of situations and the accepted response to such. Even though she only understood 80% of the communication, she was able to fake it 10% of the time as thus appear to be functioning at a better comprehension level than she was. If I've misread you, shel, please feel free to correct me.

 

[Capmeister]

That's another argument I hear a lot.... CI doesn't work because "I know about people that don't use them any more...."
(That's not what you said... it's something I get a lot on the "other side".)

I really would like to see some research regarding WHY they chose CI, and HOW they worked to make it work...
I'm sure there are people that just cannot manage having all the sound around them, but I have a feeling that others chose CI as a gadget. Just to try out, just to hear sound, but never realising that it requires a lot of work.
And in this world of "instant gratification"... working for success is sometimes just too much trouble...
Again, I'm sure there are people where it just doesn't "work", but when I read a post where someone says "CI sucks because there's soo many terrible sounds.." then I guess that the CI works, just the attitude sucked....

Just my $ worth (NOK 6 in Norway..)

My brother will be 30 years old in August. When he was 9, he got a CI. It was sold as "now you'll hear." Chances are all the caveats were detailed, but parents and young children are wont to overlook those when new technology promises a chance for a big life change.

He used it for three years, working hard to make it work, to learn speech, and ulitmately he said it just didn't work for him. A honk of a car horn and a knock at the door sounded the same. And, he hated hearing.

I'll quote from something he wrote in college about it:

"I had gotten so used to my world of silence that I hated to hear sounds! Yes, you read that right. I have heard, and I hated it. The sound was just plain annoying. I couldn't get rid of it. Finally, in frustration, I took off the machine, dumped it into some drawer that I can't find today, and never looked back. And you know what? I'm glad I did! Let's say that tomorrow you suddenly wake up with the power of telepathy. You can read others' minds. At first you'd probably think "hey, cool!" but eventually you would face a problem. You can't stop this onslaught of other people's thoughts. You're *always* reading others' minds, even when you don't want to. You continually have to "hear" this, all the time. It never stops. You can't filter out any thoughts, unlike a person trained in telepathy would be able to, because you have never been able to do this before, and you don't know how to stop. How long before you go cuckoo? I'll be honest. If I woke up tomorrow, and I could hear, and I couldn't turn off this sense, I seriously doubt I'd last a year."

Now, he had the surgery over 20 years ago, and CIs have changed. Perhaps today they're better at adjusting it then they were then. I don't know. I know I've heard what an unadjusted or poorly adjusted CI sounds like, and I'd toss it out too.

While I'm sure that since the CI wasn't what my brother expected caused some of the disappointment, he DID try to make it work for 3 very frustrating years. But ultimately he realized he didn't need to be fixed, he liked not hearing, and was fine the way he was. Sure, there are some hurdles... but I think it helps that he doesn't consider himself a deaf person. He consideres himself a person... who happens to be deaf. I.E. an individual.

That's the point... CIs will work for some, not others. Oralism works for some, not others. ASL works for some, not others. Everyone is different, everyone is an individual, and everyone has different strengths and weaknesses. That's nothing unique to the deaf community--that's just S.O.P. for the human race.

 

[jillio]

My brother will be 30 years old in August. When he was 9, he got a CI. It was sold as "now you'll hear." Chances are all the caveats were detailed, but parents and young children are wont to overlook those when new technology promises a chance for a big life change.

He used it for three years, working hard to make it work, to learn speech, and ulitmately he said it just didn't work for him. A honk of a car horn and a knock at the door sounded the same. And, he hated hearing.

I'll quote from something he wrote in college about it:

"I had gotten so used to my world of silence that I hated to hear sounds! Yes, you read that right. I have heard, and I hated it. The sound was just plain annoying. I couldn't get rid of it. Finally, in frustration, I took off the machine, dumped it into some drawer that I can't find today, and never looked back. And you know what? I'm glad I did! Let's say that tomorrow you suddenly wake up with the power of telepathy. You can read others' minds. At first you'd probably think "hey, cool!" but eventually you would face a problem. You can't stop this onslaught of other people's thoughts. You're *always* reading others' minds, even when you don't want to. You continually have to "hear" this, all the time. It never stops. You can't filter out any thoughts, unlike a person trained in telepathy would be able to, because you have never been able to do this before, and you don't know how to stop. How long before you go cuckoo? I'll be honest. If I woke up tomorrow, and I could hear, and I couldn't turn off this sense, I seriously doubt I'd last a year."

Now, he had the surgery over 20 years ago, and CIs have changed. Perhaps today they're better at adjusting it then they were then. I don't know. I know I've heard what an unadjusted or poorly adjusted CI sounds like, and I'd toss it out too.

While I'm sure that since the CI wasn't what my brother expected caused some of the disappointment, he DID try to make it work for 3 very frustrating years. But ultimately he realized he didn't need to be fixed, he liked not hearing, and was fine the way he was. Sure, there are some hurdles... but I think it helps that he doesn't consider himself a deaf person. He consideres himself a person... who happens to be deaf. I.E. an individual.

That's the point... CIs will work for some, not others. Oralism works for some, not others. ASL works for some, not others. Everyone is different, everyone is an individual, and everyone has different strengths and weaknesses. That's nothing unique to the deaf community--that's just S.O.P. for the human race.

Thanks for sharing your brother's story. It illustrates the fact that the issue is not really about CI/no CI or hearing/not hearing. Its about the fact that what is desirable for one is not desirable for all, and what one needs to function at an optimal level may well be a hindrance to another. And, if parents are to truly make informed choices, they must be open to learning of the experiences of those who have experienced satisfaction, as well as those who have not been satisfied with their experience. And I think we can all agree that the professionals are woefully lax in making any information regarding limitations available to potential candidates and/or their parents.

 

[rockdrummer]

Not to step on shel's toes here, but her reference to 80% was regarding comprehension of language and communication. Her reference to 90% was in regard to asimmilation, and that would include behaviors, interpretations, and undertanding of situations and the accepted response to such. Even though she only understood 80% of the communication, she was able to fake it 10% of the time as thus appear to be functioning at a better comprehension level than she was. If I've misread you, shel, please feel free to correct me.

I guess in my mind I don't seperate the two. The ability to communicate and comprehend communication is a major part of assimilation if not 100% of it. I am open to other views.

 

[rockdrummer]

Thanks for sharing your brother's story. It illustrates the fact that the issue is not really about CI/no CI or hearing/not hearing. Its about the fact that what is desirable for one is not desirable for all, and what one needs to function at an optimal level may well be a hindrance to another. And, if parents are to truly make informed choices, they must be open to learning of the experiences of those who have experienced satisfaction, as well as those who have not been satisfied with their experience. And I think we can all agree that the professionals are woefully lax in making any information regarding limitations available to potential candidates and/or their parents.

Great points. At the end of the day its still a crap shoot. However, having information on success and failures would greatly prepare anyone to make a truly informed decision. As I mentioned in another thread, It's sad that soft failures are not tracked. Personally they could have greatly influenced our decision.

 

[jillio]

I guess in my mind I don't seperate the two. The ability to communicate and comprehend communication is a major part of assimilation if not 100% of it. I am open to other views.

I guess if I could reduce it down it would be the difference between actual understanding, and appearing to understand. Making a right guess on the way to respond is different definately knowing what response is expected. Goes back to the old story of doing fine and getting through in a hearing environment, but always feeling as if one doesn't quite belong or is a fraud.