HAs FOR BABY BEFORE CI

deafdyke said:
Exactly. CIs still pretty much make someone functionally HOH....functionally hoh folks who do not know ASL are dead in non perfect listening conditions. The world is not a soundbooth........and that's sad that the HOH folks at the meeting didn't know ASL...if they did then they could have functioned well in any setting!
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I agree. I'm trying to learn ASL now, it's slow going and I know it will take a long time.

I keep trying to remind myself that even if I only know a few signs, if the other people around me also know those signs it can help us get over a stumbling block when we don't understand each other. So there can be benefits to ASL (including finger spelling) even before one has full fluency.
 
Jazzberry said:
I'm not up to date on everything that is available now. I know that there use to be at least one product that was not that expensive compared to most FM systems.

Oticon use to make a mic that plugged in directly to hearing aids that had DIA (direct audio input) options. IIRC, the mic was priced for about $100.00 in the 1990s. Boots had to be purchased separately for the hearing aids that were designed to have the DIA options. The boots were what allowed the assistive listening device (in this case the mic) to be interfaced with the hearing aids. I don't recall what the boots usually cost, but the price of the mic, boots and cable all together were much less expensive than FM systems.

An important consideration even if one can purchase an FM system because FM systems and DAI mics are not water or coffee proof -- (I lost one of those mics to a cup of coffee once.) Even if you have an FM system, one is not necc. going to want to risk using it in all social situations.

I have tried to find similar systems more recently for other people and couldn't. It really troubles me that, AFAICT, the less expensive options are no longer available.

I'm guessing that the system you had probably used bluetooth to interface witht the hearing aids?
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No, this was so long ago it was before Bluetooth was a big thing. Or even "a" thing, maybe.

It was a mike on a little stand (so I could put it on a table) and the boots for the aids. The whole thing cost around $1,000, as I recall. It did work very well, until my hearing got even worse and the ReSound aids didn't work for me any more.
 
TXgolfer said:
I forget, don't you have Nadias? That is what I have and they had some type of mic that is supposed to work really well. I didn't like it though. I don't remember it being real expensive but it might have been.
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No, I have older ones, "Savia Arts." At the time they were the high-end aids, but have now been discontinued. The Naidas are now considered the top of the line, aren't they? I'd like to try them but so far have not.

The mike I had was part of the ReSound system. Of all the aids I've used, I liked the sound quality of the ReSounds the best, but when the ones I had were no longer enough for me, I was told that my hearing was worse than what any ReSound aids could cover. That's when I bought the Phonaks.
 
Beach girl said:
No, I have older ones, "Savia Arts." At the time they were the high-end aids, but have now been discontinued. The Naidas are now considered the top of the line, aren't they? I'd like to try them but so far have not.

The mike I had was part of the ReSound system. Of all the aids I've used, I liked the sound quality of the ReSounds the best, but when the ones I had were no longer enough for me, I was told that my hearing was worse than what any ReSound aids could cover. That's when I bought the Phonaks.
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Nadias were top of the line when I bought mine 2 years ago. Not sure if they still are. I switched from Savias 2 years ago. I don't notice alot of difference sound wise but playing golf I sweat alot and there is a HUGE difference when it comes to sweat. My new one rarely cuts out. The other one cut out quickly
 
Interesting, I've never had that problem.

Maybe that's proof I'm not exercising enough. :lol:
 
Kat05, I jump in just to give you another parent's perspective on the whole thing...My son is 3 yo and veeery profound (althought his hearing tests are still not reliable - many deaf people told me we can't take results for granted until he's 7 or 8 yo and really wanting to cooperate). Like you, me and my husband were frightened at the beginning: we knew nothing about deafness and we were scared about not being able to give our son what he needs to become a happy and independent adult.

We took our time with HA even if at the beginning my husband was pushing for CI. I was scared, also because it didn't sound like a "one time in a lifetime" surgery. This is what scares me the most even now: the internal part can last 10, 15 years... Maybe 20? Then you have to substitute it with another surgery. After all, my son was so beautiful and happy... I never was able to see anything "wrong" in him. So I wanted to give HA a good try before trying to "fix" something that, for me, had no need to be fixed since it wasn't broken.

Like your son, mine wasn't (and isn't) really interested in hearing with his aids. It may be that he just doesn't hear enogh to be interested, but almost two years are passed from when we found out about his deafness (he was 18 mo old) and you know what? Now our persepective are sooo changed! In the meanwhile, I explored the CI option, learned a lot, met adults and children with CI. I ended up where I started... It can be a great tool, but not for my son, not now. He may ask for one when he's older, and will have all my support, but I'm not going to do that now that he's little.
My husband started a SL course, found some deaf friends, and he found out he's very good at signing. He likes it a lot, and believe me, after spending some time with happy and confident Deaf people (yes, even the ones that "speaks bad" and that hospitals uses to scare you, depicting them as poor handicapped persons... You know what? Despite having issues with spoken language, they're just like anyone else, have a job, family, and are NO handicapped people at all!) your perspective on the absolute need for Ci and hurry to get it changes a lot. There's no hurry. They say the sooner the better, but you son has no expiring date stamped anywhere. Six months or even one year, are necessary for you, the parents, to get used to having a deaf son and to learn about deafness, to know deaf people, to make informed decisions about CI. It's not something to choose in 15 days or 2 months. Your son will have some sign you said, well, so even more you can take your time: my biggest concern was that he could feel "left out" while we decided about his future. Now he's starting to sign back, and we can relax a bit: he has a way to understand what's going on around him, he's not "alone" with his silence. We are trying to meet him halfway. He's wearing his HA, we are learning signs... Seems the better way for all of us. But if we took the decision to implant him immediately like the hospital said, our path would have been different and our decisions less informed. That's especially true for my husband.

Take you time, meet as many deaf people you can. Not only CI kids: ADULTS, with HA, with CI, with nothing. ASL users, oralists. Then look at your son and wonder what fits him best... But don't hurry. It's not easy at the beginning for parents, you still have to cope with the whole thing, I wouldn't rush on a decision now.
 
It's good knowing that other people have exactly the same thoughts and fears...! Thanks messymama.
 
Messymama, do I remember right that you' re in Italy? We live in a greek island where there is nohing for deaf children... This is one of my worse thoughts, what we will do when he is old enough for school.
Another question: when should we seek for a second opinion? I thought that leaving 2-3 months to pass after the first evaluation would be a good idea, just in case there is any difference.
 
kat05 said:
Messymama, do I remember right that you' re in Italy? We live in a greek island where there is nohing for deaf children... This is one of my worse thoughts, what we will do when he is old enough for school.
Another question: when should we seek for a second opinion? I thought that leaving 2-3 months to pass after the first evaluation would be a good idea, just in case there is any difference.
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Kat- there are devices available that link up with HA's or a CI that can help in getting the sound transmitted easier. I would think at the least, your sons school would be able to provide that.
 
Beach girl said:
I doubt that anyone is going to steal them off a baby! I'd sure hope not.

Later, as the child grows up and is out and about, I suppose it's a risk he should be made aware of. What a world we live in, when we have to worry about things like that...
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Actually, I remember reading how a child had one stolen right off his/her ear. I think s/he was sitting in a grocery cart, or maybe a stroller??
 
messymama said:
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Take you time, meet as many deaf people you can. Not only CI kids: ADULTS, with HA, with CI, with nothing. ASL users, oralists. Then look at your son and wonder what fits him best... But don't hurry. It's not easy at the beginning for parents, you still have to cope with the whole thing, I wouldn't rush on a decision now.
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messymama, EXCELLENT POST!!!!!!! I also wonder if there really is a HUGE difference with results from implantation from super early implantation vs. waiting until the kid can paricpate in traditional soundbooth tests. It seems like we do have this panic " GOTTA IMPLANT ASAP otherwise they'll never end up at Harvard!" I mean yeah there are cases where kids obviously do not benifit from aids.....but it's also very hard to tell how well a baby can hear. Even parents of profound kids will tell you that their kids played " Now I hear you now I don't." with them.
 
Jazzberry said:
I agree. I'm trying to learn ASL now, it's slow going and I know it will take a long time.

I keep trying to remind myself that even if I only know a few signs, if the other people around me also know those signs it can help us get over a stumbling block when we don't understand each other. So there can be benefits to ASL (including finger spelling) even before one has full fluency.
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Yes, don't you wish SO badly you'd gotten the chance to attend a deaf program or deaf school like MSSD?
 
kat05 said:
Messymama, do I remember right that you' re in Italy? We live in a greek island where there is nohing for deaf children... This is one of my worse thoughts, what we will do when he is old enough for school.
Another question: when should we seek for a second opinion? I thought that leaving 2-3 months to pass after the first evaluation would be a good idea, just in case there is any difference.
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Yes I'm in Italy and we don't have much here, too. And as for school... I try to live one day at a time :roll: he's in kindergarden now and he seems ok, we try to make him stay with other deaf kids whenever is possible, and that's it. for now. But there should be some deaf community somewhere not too far from where you are... That's the first place to go.

Second opinion, you dais? Well, I may be too extreme, but I asked for second opinions and all I found out is... If you go to a Hospital with a profound kid, they'll tell you to implant. Period.

Trust what YOU see in everyday life, and make informed decision based on what's really important for you. Your child is not only a deaf ear, he's a person and while growing up you'll be able to understand what fits him best.

At the time we decided to wait until he was 3 to decide... In the meanwhile we changed HA since the old one was too loud, he refused them and they didn't listen to us parents even if we told them.

Our new HA has more high pitch sound and a better fit, he's wearing them all day and it's really clear that he has benefit from them, even if maybe not enough to understand speech. It's enough for us since he's progressing in sign and you know, for deaf people it's really difficult to discriminate speech! It's a hard work and some kids simply can't see the use of it..

So it may take a LONG time (years, not months). The CI doesn't necessarily make it easier. I'm sure it would'n change much for my son. The speech therapist said she thinks he would be a late talker even if he was hearing...

One deaf woman I know told me she came to be sure of what sound is what when she became 16-17 yo. Before, she always had to stop and think "what was that?" and work hard on it... And she had HA when she was 4, if I remember correctly, and has exceptional results with them (can use the phone). After seeing this, I simply refuse to hurry!!!

There would be more to say about sound, speech and what deaf children need to grow up happily, but deaf adults can teach you better than me: go find them.
 
messymama said:
Kat05, I jump in just to give you another parent's perspective on the whole thing...My son is 3 yo and veeery profound (althought his hearing tests are still not reliable - many deaf people told me we can't take results for granted until he's 7 or 8 yo and really wanting to cooperate). .
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Very true! My last audiogram, taken a few years ago, shows my hearing range between 90 and 110.

Guess what? My audiogram from when I was 5 or 6 showed my range as being 120 or lower (on the chart). My hearing didn't improve, it was that I was very young and probably not as attentive during the tests so indeed, you're right, it's premature to jump to conclusions when your deaf child is very young.
 
shel90 said:
Awwww..yea, ASl has no barriers unless there is vision pollution but even then, there is always tactile signing. :)
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yup... even when I was deprived of my vision yesterday for some tests... my terp was able to tell me that they had to start a test over, using tactile sign... could not have gotten ANY of that even if i had been wearing my HA's in the test... ASL has no barriers for a deaf person, Voice does... even with HA's or CI... still there are many barriers for a deaf person
 
ash345 said:
yup... even when I was deprived of my vision yesterday for some tests... my terp was able to tell me that they had to start a test over, using tactile sign... could not have gotten ANY of that even if i had been wearing my HA's in the test... ASL has no barriers for a deaf person, Voice does... even with HA's or CI... still there are many barriers for a deaf person
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And hearing people too...
 
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