CI progress and starting school for parents of DHH kids

Yes, and they've also loosened the restrictions for CI. Oceanbreeze. I know someone who can hear 80% with aids, but still is thinking about getting CI. In some circles it is being pushed like it's the LATEST CELLPHONE!!!! I'm not against CI if hearing aids don't help at all, or if they only help with enviromental noises, or if the person has auditory nereopathy (a condition where hearing aids DON"T work) but some people are almost shopping around for one.
 
2kids1hoh said:
Very good point. That's why I want my daughter to learn sign. She still has the hearing aids, so we are signing with her too. She is 8 months now, and I THINK she actually signs sleep, mommy, daddy, more and sometimes milk. I want her to learn sign before she has the implant because I want her to be able to communicate with us. She seems to have a temper already and I don't know if that is out of frustration. Most 8 month old babies can't communicate their needs, but at least they hear the parents speak and can see the communication the parents are making with them. Hope this makes sense.

When she does have the implant, I want her to be able to use sign for the situations you mentioned below. All summer kids are in pools, sprinklers, and taking baths. I want it to be an easy transition for her when she has to take the implant off.

To anyone with a child with an implant - I recently heard about the slides being a problem. Is it metal slides? Is there anything else that children cannot do with the implants on, other than the obvious water activities? Also, do you find that the implant is less annoying for the child than hearing aids? My daughter pulls off and tries to eat her hearing aids all the time. It's not that she is pulling them off because she doesn't like them, she grabs the string, or the huggie, or rolls over and they fall off.

Thanks
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I used to have major problems with Kayla and her aids. She did not like them at all and especially did'nt like the earmolds. She would constantly pull them off. In Kayla's case we came to find out the reason was because she did not benefit from them and thats why she would pull them off. Once she got her implant we did not come across that problem...until she got mad. When she would get mad or did'nt get her way when she was younger, off went the implant flying across the room...lol. At first i used to pick it up and put it back on her but when that started happening more often, i would just leave it on the floor until she calmed down and picked it up herself ands gave it to me to put it back on her realizing she could'nt hear her cartoons. She had quite the "my way or no way".
 
deafdyke said:
Yes, and they've also loosened the restrictions for CI. Oceanbreeze. I know someone who can hear 80% with aids, but still is thinking about getting CI. In some circles it is being pushed like it's the LATEST CELLPHONE!!!! I'm not against CI if hearing aids don't help at all, or if they only help with enviromental noises, or if the person has auditory nereopathy (a condition where hearing aids DON"T work) but some people are almost shopping around for one.
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sigh, I heard around 70% with aides. I spent that $6000 about a year and a half before I began my exploration into something that might actually help me HEAR people speak on new digital aides. What a waste of money. I had actually bought ITE ones a year prior to the BTE's and they didn't help much either.

Despite all your talking about the percentage a person hears, the person involved knows if the HA's are actually helping them hear or not. My CI evaluation team even told me they couldn't figure out why some of us who 'should' benefit from HA's quite simply don't. Perhaps we have more expectations for them then you and other people do? I missed alot using the oh so wonderful HA's. I hear and comprehend so much more with the CI. To me the costs of the CI that I will have to pay for over the years are well worth the money. The clarity of those who are speaking is probably what would be concidered 'normal' for me now. I got what I wanted with the CI, I took a known risk of things possibly getting worse, since I didn't like the benefit from HA's I figured the risk was worth it. Now I sit here with 2 new HA's that are all paid for and no longer need.

I can see exactly why someone whom you may think should not even be concidered for a CI would explore the possiblilty of better hearing with one.
 
kayla123 said:
I used to have major problems with Kayla and her aids. She did not like them at all and especially did'nt like the earmolds. She would constantly pull them off. In Kayla's case we came to find out the reason was because she did not benefit from them and thats why she would pull them off. Once she got her implant we did not come across that problem...until she got mad. When she would get mad or did'nt get her way when she was younger, off went the implant flying across the room...lol. At first i used to pick it up and put it back on her but when that started happening more often, i would just leave it on the floor until she calmed down and picked it up herself ands gave it to me to put it back on her realizing she could'nt hear her cartoons. She had quite the "my way or no way".
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Sounds just like Victoria. I just spent 5 minutes trying to get the hearing aids on her. She kept pushing my hand out of the way. I have to fight her just to get them on sometimes... other times she doesn't give me a problem. I guess it's her mood. That is cute about what you said about her wanting to hear her cartoons. She knows the difference and she obviously loves hearing.

It's definetly possible that she doesn't like them for the same reason as Kayla. They were being fixed one day so we didn't have them and I felt like we were all on vacation. She was pretty happy that day too. To me she is just getting vibrations from the noises. She has never turned to my voice.

Thanks for the information.
 
jag said:
sigh, I heard around 70% with aides. I spent that $6000 about a year and a half before I began my exploration into something that might actually help me HEAR people speak on new digital aides. What a waste of money. I had actually bought ITE ones a year prior to the BTE's and they didn't help much either.

Despite all your talking about the percentage a person hears, the person involved knows if the HA's are actually helping them hear or not. My CI evaluation team even told me they couldn't figure out why some of us who 'should' benefit from HA's quite simply don't. Perhaps we have more expectations for them then you and other people do? I missed alot using the oh so wonderful HA's. I hear and comprehend so much more with the CI. To me the costs of the CI that I will have to pay for over the years are well worth the money. The clarity of those who are speaking is probably what would be concidered 'normal' for me now. I got what I wanted with the CI, I took a known risk of things possibly getting worse, since I didn't like the benefit from HA's I figured the risk was worth it. Now I sit here with 2 new HA's that are all paid for and no longer need.

I can see exactly why someone whom you may think should not even be concidered for a CI would explore the possiblilty of better hearing with one.
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:gpost:

Excellent point! Percentages don't explain everything and it is not exactly a science yet in determining who will do well with HAs and maybe better with a CI. There are too many variables involved that even the experts will hedge on their prognosis.
 
jag........ I do realize that there are some people for whom hearing aids don't exactly work too well......like there's recruitment, auditory nereopathy etc etc. I'm not talking about people like you, people who actually can't benifit too much from hearing aids. I know there are hoh folks with poor response to hearing aids.....but I mean there does seem to be almost a marketing blitz about HOW WONDERFUL the CI is. I think because the CI is so expensive, that people really need to experiment. If they've gone through a significent amoutn of time, with no real good response to hearing aids, then yeah.....but if they are looking into it b/c of marketing hype, they really need to look at other options. WAIT!!!! I GOT IT!!!!!! I'm sure you remember that when digitals first came out, EVERYONE was raving about them. Yet it turned out that results were very mixed. Some people LOVED them, some hated them and so on.
 
deafdyke said:
Yes, and they've also loosened the restrictions for CI. Oceanbreeze. I know someone who can hear 80% with aids, but still is thinking about getting CI. In some circles it is being pushed like it's the LATEST CELLPHONE!!!! I'm not against CI if hearing aids don't help at all, or if they only help with enviromental noises, or if the person has auditory nereopathy (a condition where hearing aids DON"T work) but some people are almost shopping around for one.
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I beg to differ. You seem very against the CI for some reason. You seem to think that a person getting the CI will think getting it makes them hearing, or if a parent decides to implant their child, the parent will think their child is hearing from the moment of implant surgery. From what I've read on this forum, that simply isn't true. Most people know that when they take off the CI at night, they are still deaf. They are thrust into total silence if the HA is also off.

Wearing a CI does NOT make a deaf person hearing, and most people know that. I don't understand why you have such a zeal to warn people against the CI. It's not a bad thing.
 
deafdyke said:
jag........ I do realize that there are some people for whom hearing aids don't exactly work too well......like there's recruitment, auditory nereopathy etc etc. I'm not talking about people like you, people who actually can't benifit too much from hearing aids. I.
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I don't have any of the things you mention, hearing aides should have given me great benefit, they did to 70%, to some people that is evidently great. to me it really wasn't much better then without. I'll repeat, I DID GET SOME BENEFIT from my HA"s , but to me that benefit was CRAPPY. I was not pushed into a CI, I was the one who began exploring the option to see what it was all about. I was the one who decided to take the risk of losing the hearing I did have in my left ear (only a 'severe' loss) and have an implant in hopes that I would finally get clarity in SPEECH. Louder from HA's doesn't actually mean that clarity is also there. According to insuance companies and the gov. 70% is great benefit. If I was on a guv. program I wouldn't even have been concidered for a CI. Thankfully I've never had to rely on the gov. and my ENT was very persausive and I recieved the CI and it has far exceded my expectations/hopes. I can even understand my daughters on the telephone which I haven't been able to do in some time even with HA's with telecoil or my amplyfied phone.

Having only had a 'severe' hearing loss (sen/nueur) I honestly don't see how someone with profound hearing loss would concider HA's to be helpful.
 
I am profoundly sensioneuraly deaf and I had hearing aids, and they were far from "helpful". My CI works for me.
 
I don't understand why you have such a zeal to warn people against the CI. It's not a bad thing.
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Oceanbreeze, that's easy. I'm NOT anti CI.......more pro-experimenting with other technolgies first. I know that more and more parents are realizing that a CI does not make a dhh kid hearing, but rather (in best case scenerio) hoh! Which is REALLY good.......as a hoh kid, I can honestly say that our needs are VERY different from a hearing kid, and it's really good that hearing parents aren't being encouraged to have their dhh kids assimluate into the hearing world.
I just think that in some cases, some people are REALLY overhyping the CI. I mean I'm only hoh (and conductive loss at that) but I mean I have been the recipiant of CI shills, like in chatrooms, or even on my buddy list!
I think the CI is great.......but it is ALSO very very expensive, and it's not right for EVERYONE. Yes, they are awesome for people with very very little residual hearing, or who can't really benifit from hearing aids..........but I really think that in some cases, other technologies might benifit people just as well. I'm no audilogist, but I mean.....I know people who have qualified to get CI by using hearing aids that aren't powerful enough for their loss. (and trust me......it's very easy to do that since most dinky aids don't provide enough power for more then a mild loss) Well.........actually the thing is every person's response to hearing technology is very different and indivdual.
There are people with severe and profound losses, who get/ got a lot of benifit out of the kinds of hearing aids that were around back in the old days. Yet another person with the same audiogram might not benifit as much from hearing aids.
CIs are the same thing.......I know some people (most here!) are very realistic as to what they might hear and might not hear with the CI......and that's awesome! But others seem to be buying into the latest hype.
As a matter of fact, I'm 100% pro CI for people who get a good response with a hearing aid in one ear, but who have no aidablity in their other ear!
I'm also VERY pro CI for those who really can't benifit all that much from traditional hearing aids b/c their losses are too profound. That's fine........but if CIs weren't being marketed as the New Digital Aid, you wouldn't even hear a peep from me.
 
deafdyke said:
Oceanbreeze, that's easy. I'm NOT anti CI.......more pro-experimenting with other technolgies first. I know that more and more parents are realizing that a CI does not make a dhh kid hearing, but rather (in best case scenerio) hoh! Which is REALLY good.......as a hoh kid, I can honestly say that our needs are VERY different from a hearing kid, and it's really good that hearing parents aren't being encouraged to have their dhh kids assimluate into the hearing world.
I just think that in some cases, some people are REALLY overhyping the CI. I mean I'm only hoh (and conductive loss at that) but I mean I have been the recipiant of CI shills, like in chatrooms, or even on my buddy list!
I think the CI is great.......but it is ALSO very very expensive, and it's not right for EVERYONE. Yes, they are awesome for people with very very little residual hearing, or who can't really benifit from hearing aids..........but I really think that in some cases, other technologies might benifit people just as well. I'm no audilogist, but I mean.....I know people who have qualified to get CI by using hearing aids that aren't powerful enough for their loss. (and trust me......it's very easy to do that since most dinky aids don't provide enough power for more then a mild loss) Well.........actually the thing is every person's response to hearing technology is very different and indivdual.
There are people with severe and profound losses, who get/ got a lot of benifit out of the kinds of hearing aids that were around back in the old days. Yet another person with the same audiogram might not benifit as much from hearing aids.
CIs are the same thing.......I know some people (most here!) are very realistic as to what they might hear and might not hear with the CI......and that's awesome! But others seem to be buying into the latest hype.
As a matter of fact, I'm 100% pro CI for people who get a good response with a hearing aid in one ear, but who have no aidablity in their other ear!
I'm also VERY pro CI for those who really can't benifit all that much from traditional hearing aids b/c their losses are too profound. That's fine........but if CIs weren't being marketed as the New Digital Aid, you wouldn't even hear a peep from me.
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I really can't see people wanting a CI because it's the trendy thing to do these days due to the fact that it is a surgical procedure. It's different from the digital aids because HA dont require surgery. As for the cost, insurance covers it. I think its more expensive with the HA because insurance does not cover them, which is unfortunate because they are costly.
 
because it's the trendy thing to do these days
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No, it's not trendy, but I mean it does seem like there is a percentage of people with hearing loss, who have to have the latest technology. This isn't exculsive to hearing loss, but it does seem like, since they loosened the requirments there are some people who are shopping for it. Sort of like the parents of the kids who shopped around for an ADD diganoses.
I really don't think it's trendy (in cultural terms) but I do think that some people have been influcenced by some "advertising" style blitzs.
Also, the surgery is basicly day surgery......not nessarily like complicated heart surgery or whatever.
 
deafdyke said:
No, it's not trendy, but I mean it does seem like there is a percentage of people with hearing loss, who have to have the latest technology.
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Why should someone NOT go for the latest technology if they can get it? Technology improves constantly, CI's give clearer sound then HA's because loudness causes things to become distorted and harder to understand. YES I WANT THE LATEST TECHNOLOGY!!!! Just because I or some parent chooses to persue the latest and best is no reason for you to act like we do so because we're snobs or what is it you call some, overachievers?


So if wanting to be an achiever, or even an overachiever and wanting the latest and the greatest bothers some of you all I can say is Tough Luck. :)
 
deafdyke said:
Oceanbreeze, that's easy. I'm NOT anti CI.......more pro-experimenting with other technolgies first. I know that more and more parents are realizing that a CI does not make a dhh kid hearing, but rather (in best case scenerio) hoh! Which is REALLY good.......as a hoh kid, I can honestly say that our needs are VERY different from a hearing kid, and it's really good that hearing parents aren't being encouraged to have their dhh kids assimluate into the hearing world.
I just think that in some cases, some people are REALLY overhyping the CI. I mean I'm only hoh (and conductive loss at that) but I mean I have been the recipiant of CI shills, like in chatrooms, or even on my buddy list!
I think the CI is great.......but it is ALSO very very expensive, and it's not right for EVERYONE. Yes, they are awesome for people with very very little residual hearing, or who can't really benifit from hearing aids..........but I really think that in some cases, other technologies might benifit people just as well. I'm no audilogist, but I mean.....I know people who have qualified to get CI by using hearing aids that aren't powerful enough for their loss. (and trust me......it's very easy to do that since most dinky aids don't provide enough power for more then a mild loss) Well.........actually the thing is every person's response to hearing technology is very different and indivdual.
There are people with severe and profound losses, who get/ got a lot of benifit out of the kinds of hearing aids that were around back in the old days. Yet another person with the same audiogram might not benifit as much from hearing aids.
CIs are the same thing.......I know some people (most here!) are very realistic as to what they might hear and might not hear with the CI......and that's awesome! But others seem to be buying into the latest hype.
As a matter of fact, I'm 100% pro CI for people who get a good response with a hearing aid in one ear, but who have no aidablity in their other ear!
I'm also VERY pro CI for those who really can't benifit all that much from traditional hearing aids b/c their losses are too profound. That's fine........but if CIs weren't being marketed as the New Digital Aid, you wouldn't even hear a peep from me.
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You certainly seem to be.

I think the problem most people are having with this; including me here, is that you seem to want to interject your own experiences/opinions into the lives of others. You seem to feel that if it happened to YOU, it WILL happen to others, and DD, that is simply not true!

Look, on the issue of CI. I'm hearing. Most people on here know this by now, so I certainly am NOT qualifed to tell a parent what they should or should NOT due in regards to implanting their child. The point I'm making here, is YOU'RE not qualifed either. The difference is, you come off sounding like YOU ARE trying to scare people off the CI. And, why? Because of some supposed "hype"? What hype, DD?

You don't seem to be very well informed about the process of determining candidacy. You go by what you've read, but DD, that's NOT the same thing as going through the prrocess firsthand. I've never been a candidate, either, and I'm also going by what I've read. I've read the people HERE, though. From what they've said, the "hype" you speak of just doesn't exist. Sure, the technology is there. But, from what I know, the parent of a deaf child is ENCOURAGED to try HAs first to see what benefit, if any, they get from them. Then, if the child gets NO benefit, the CI is discussed further. That doesn't sound like hype, DD. That sounds like being informed of options, and dealing with the CI in a responsible manner. No parent, I repeat, NO parent is going to put their child through a surgery unless it's absolutely necessary. I don't care WHO they are!

I also don't buy your statement that they are implanting people who are functionally HoH. That makes no sense to me. Why would they do that if the person benefits from HAs? This sounds like you've talked to a few people who have gross misconceptions about the CI themselves, and you're basing your opinions on what you've heard.

In fact, everything is you've stated is based on conjecture or your own crappy experience in school. DD, hate to tell you... That's life, kiddo. I didn't haven't a good school experience, either. In fact,my experiences in school sucked. But, I don't allow my own experiences color my advice to other parents. It's NOT up to me or you to tell these parents what they should do. It's up them to decide what is best for their child. It's their child. If a parent wants to implant their child, good for them! I really love how Lily'sDad is raising his little girl. But, even if a parent chooses to go the oral route completely that does NOT mean the child is going to suffer for it. They may not.

This is my point to what you try to say. You make everything sound so absolute. "The dhh is going to have such a hard time unless they are tought to sign." What if the child doesn't have a hard time, DD? WHAT IF?
 
deafdyke said:
No, it's not trendy, but I mean it does seem like there is a percentage of people with hearing loss, who have to have the latest technology. This isn't exculsive to hearing loss, but it does seem like, since they loosened the requirments there are some people who are shopping for it. Sort of like the parents of the kids who shopped around for an ADD diganoses.
I really don't think it's trendy (in cultural terms) but I do think that some people have been influcenced by some "advertising" style blitzs.
Also, the surgery is basicly day surgery......not nessarily like complicated heart surgery or whatever.
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You seems obsessed with CI, and who cares about english skill for people with CI. I had CI and my english isn't perfect, just same with anybody aren't perfect too. You said that your language skill is great and want go to Gallaudet for liberal art, that right? I bet people with CI will have same record as your language skill and ASL isn't teach on CI children until around near teens or children who send to deaf school when their oral language isn't efficient or cannot stand in public school then start learn ASL and that's not hard to learn to use ASL for communication or other thing.
 
Hey all!
Sorry I'm jumping in so late. Isaac's CI surgery was last Monday and I've been busy with him. Educational progress with the CI interests me too. I think though, I am going to wait and see what Isaac wants when he is ready for school. The crappy thing about where we live is that all the deaf/hoh kids can get shipped to a particular school district where they are mainstreamed in the subjects they need and they can have an interpreter if they need. This school is a 45 min. drive from our house. I really dread having Isaac on a bus for 90 min a day! The pre-school is only 20 min. away, so that works out better. There are just so many educational options. Is there anyone reading the posts who home schools their deaf or hoh kid? I would be interested to know their progress as well.
 
Oceanbreeze 'I really love how Lily'sDad is raising his little girl."

Thank you! :ty:
 
deafdyke, I'm not going implant on my children in near future for some reason.

then... no comment... :)
 
Hi all, just giving an update on Kayla's progress in school. We had parent-teacher conferences at school today and things went pretty good. It was nice talking with all her teachers hearing what they had to say. She particapates a lot in class, always raising her hand and wanting to answer questions(whether she knows the answer or not...lol). Academically so far she is doing great, and socially she's interacting with all the kids and making friends. The kids are starting to learn how to read now, which i thought was too soon, what happened to coloring and nap time in kindergarten???lol, but to my surprise she's right on top of that. It's funny because anywhere she sees a word, she'll sound out the first letter and try to read the word which can be up to like 10 letters, and i'm like, that's going to take some more time kiddo, lol. The important thing is that she's trying and that she loves going to school. The only problem she has in the gym. The ceiling is so high, which dosent make a good hearing environment for her, and i could imagine how noisy it gets in there. The gym teacher does wear the fm but she told us that she was'nt sure if Kayla was hearing her. Kayla just follows what everyone else is doing when she's in the gym so it works out that way.
 
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