HAs FOR BABY BEFORE CI

shel90 said:
There was an article posted here on AD about 4 years ago about theives breaking into a house to steal a child`s implant because they saw him wearing it and thought it was a Bluetooth headpiece (back when bluetooths were new).

The article stated that the child was unable to go to school due not not having his implant processor and that he became withdrawn due not being able to communicate which sent an uproar in the Deaf community about children becoming too dependent on CIs.
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I wonder what state that child is in. I am surprised that homeowner's or renter's insurance wouldn't have covered the stolen CI.... I know mine would have. Also Texas has crime victims compensation through the state. I know they have replaced glasses damaged in fights.....pretty sure it would cover the CI as well. I think it covers up to $50,000. It is financed through court costs charged to offenders.
 
kat05 said:
I don't have a hearing loss. Our son's deafness has not been explained, there is no such record in our families, I had a normal pregnancy, no high fever, no meningitis etc.
What scares me is the possibility that his not hearing will affect his future and make him unhappy... It is this that I would like to prevent, no matter what.
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From what I observed, I think the best way to prevent that is to teach him ASL regardless if he ends up having a CI or not.

IMHO, its good to be able to have a way to communicate that is effortless (even if he won't be able to use ASL with everyone he knows).

CIs are not quite there from what I've seen. From what I observed they have the effect of making most people hard of hearing so that means that they will not be able to hear as well as a hearing person especially in noise, within a group, and over distance. There are always outliers of course. Some people get no benefit and there have been reported cases of people hearing almost as well as a hearing person. I've met a few people who went for the CI and did not get any benefit; I have never met anyone who ended up hearing as well as a hearing person. I've met many people who ended up in the same situation as a hard of hearing person who wears hearing aids -- how well they actually hear does cover a wide range.

Earlier this month I went to an HLAA chapter meeting that ended up being half meeting and half party. The party part didn't work out too well -- most people could not hear well in the room once everyone started talking and many left early. I thought that was sad. For whatever reason most HH people don't use the type of ALDs that interfaces a handheld mic to the hearing aids and allows many to hear really well * and almost all of the HH people at the meeting did not know sign.



* That type of ALD allows you to hear better assuming that you do well on the test in the audiologist's sound booth that determines how well one can understand words. It's called a word discrimination test and should be part of the set of tests one gets while taking an audiogram, well for people who are old enough to have a vocabulary. At 18 months your son is too young for that test.
 
TXgolfer said:
I wonder what state that child is in. I am surprised that homeowner's or renter's insurance wouldn't have covered the stolen CI.... I know mine would have. Also Texas has crime victims compensation through the state. I know they have replaced glasses damaged in fights.....pretty sure it would cover the CI as well. I think it covers up to $50,000. It is financed through court costs charged to offenders.
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I remember it was somewhere in the Northeast. The article talked about delays with getting the processor replaced due to insurance issues. It was a while ago when it was posted. Hopefully someone else will remember and have more details.
 
Jazzberry said:
Earlier this month I went to an HLAA chapter meeting that ended up being half meeting and half party. The party part didn't work out too well -- most people could not hear well in the room once everyone started talking and many left early. I thought that was sad. For whatever reason most HH people don't use the type of ALDs that interfaces a handheld mic to the hearing aids and allows many to hear really well * and almost all of the HH people at the meeting did not know sign.
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Maybe because those systems are quite expensive. I had one and really liked it, from ReSound, but then when I got my Phonak aids, the ReSound system wouldn't work. And I don't have the right boots on the Phonak aids to interface with the system. If I upgrade, that's something that I would definitely like to have again.
 
shel90 said:
By exposing him to the Deaf community and Deaf culture, he will not feel like a "broken" hearing person. Many of us were raised thinking we were defective because we weren't exposed to ASL, the Deaf community, or Deaf culture and that made many of us miserable as children. Since learning ASL and getting involved with the Deaf community, I have come to love myself and find true happiness for the first time in my life.
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:gpost: this this this this this!!! Please, listen to those of us who have been raised to beleive we were broken hearing people... we aren't broken, your son isn't broken, your son is a whole deaf person... and we don't need anything to "fix" us... please teach your son that... that he is whole and healthy, and that his natural language (sign) is perfect as well.
 
Jazzberry said:
CIs are not quite there from what I've seen. From what I observed they have the effect of making most people hard of hearing so that means that they will not be able to hear as well as a hearing person especially in noise, within a group, and over distance. There are always outliers of course.
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I recently went to a conference where about 40 CI users and some spouses ate dinner in a crowded room with horrible acoustics. I was shocked to be able to sit at a table with three CI wearing adults and to have a productive conversation- when I could hardly hear myself think. I think I've also posted here how my daughter can hear us and respond appropriately in a crowded gymnasium that is very loud and full of people. Again, I'm the one that preaches that CI isn't a fix it switch, but I continue to be amazed with how well they work.
 
Beach girl said:
Maybe because those systems are quite expensive. I had one and really liked it, from ReSound, but then when I got my Phonak aids, the ReSound system wouldn't work. And I don't have the right boots on the Phonak aids to interface with the system. If I upgrade, that's something that I would definitely like to have again.
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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?
 
iowaboy said:
I recently went to a conference where about 40 CI users and some spouses ate dinner in a crowded room with horrible acoustics. I was shocked to be able to sit at a table with three CI wearing adults and to have a productive conversation- when I could hardly hear myself think. I think I've also posted here how my daughter can hear us and respond appropriately in a crowded gymnasium that is very loud and full of people. Again, I'm the one that preaches that CI isn't a fix it switch, but I continue to be amazed with how well they work.
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It's quite possible that I may be aware of a higher percentage of people who don't do as well with their CIS than you because I know most of them through HLAA meetings and conventions.

There are a lot of reasons to be affiliated with HLAA including because of the lobbying work they do in regard to captioning, compatible telephones and cellphones, employment issues for the d/hh, health insurance benefits for hearing aids (obviously still a ways to go with that one :( ) and more. But despite those important reasons -- for the most part people that go to the meetings are more likely to go because they don't communicate easily in their daily life and not because they are looking for ways to help keep hard won laws and regulations that benefit the d/hh intact and because we have other issues that need a lot of grassroots lobbying efforts.


Perhaps after we get national health insurance, more information that reveals exactly what percentage of Americans benefit from CIs and to what degree will be available. Right now, whatever information is available appears to be mostly anecdotal unfortunately. FWIW, even so, I would probably still go for a CI myself if I could no longer benefit from hearing aids. But I would do so with the understanding that I would have no way to know exactly how much I would benefit or if I would benefit at all, and also have no way to really estimate the odds. I think the odds are that one is more likely to benefit than not -- but I can understand why people are not happy that more precise statistical information isn't available.

if you don't mind my asking, what organization sponsored the conference you went to?
 
I continue to be amazed the lack of barriers with ASL. We can chat easily in noisy bars, to and from different cars, through glass and many more. ASL opens many doors for deaf and hh people, even for hearing people too!
 
Yes, good points. It was sponsored by the Bionic Ear Association, which is owned by one of the cochlear implant companies. Just as the HLAA meeting attendees are likely to be self selected because of the issues you describe, the BEA attendees are likely a self selected group who are satisfied with their CI. We were certainly there because of how satisfied we are with the level of communication the CIs are giving our daughter. I know there are people who don't get a good response from CI- I've met a few, but I've also met several at the other end of the spectrum, given similar histories, etc. We continue to be amazed at how the technology is helping our daughter communicate. I feel like we expected an inch and were given a mile.
 
Beach girl said:
Maybe because those systems are quite expensive. I had one and really liked it, from ReSound, but then when I got my Phonak aids, the ReSound system wouldn't work. And I don't have the right boots on the Phonak aids to interface with the system. If I upgrade, that's something that I would definitely like to have again.
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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.
 
shel90 said:
I continue to be amazed the lack of barriers with ASL. We can chat easily in noisy bars, to and from different cars, through glass and many more. ASL opens many doors for deaf and hh people, even for hearing people too!
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How true! My wife and I are far from fluent, but we use sign every day at work, around the farm, etc. It is so cool to see our daughter doing it too. I just wish we had a better way of learning, and more people to "talk" to.
 
iowaboy said:
How true! My wife and I are far from fluent, but we use sign every day at work, around the farm, etc. It is so cool to see our daughter doing it too. I just wish we had a better way of learning, and more people to "talk" to.
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Awwww..yea, ASl has no barriers unless there is vision pollution but even then, there is always tactile signing. :)
 
Lissa said:
HA's are generally used for a while before CI's, in case the child is able to hear with them. I wore HA's from 1 year old until the age of 10 when hearing aids no longer worked for me. But while you're tryin decide on the implant or not stuff, give him language, teach him to sign!!
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and this is from a girl who was orally educated!
 
iowaboy said:
How true! My wife and I are far from fluent, but we use sign every day at work, around the farm, etc. It is so cool to see our daughter doing it too. I just wish we had a better way of learning, and more people to "talk" to.
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It's pretty cool that you are giving your daughter alot of options. Can she lip read as well? I really enjoy lip reading and was surprised how quickly I picked it up without even trying. It provides for great entertainment at the local Starbucks.....I am the hub of local gossip now. :lol:
 
kat05 said:
I don't have a hearing loss. Our son's deafness has not been explained, there is no such record in our families, I had a normal pregnancy, no high fever, no meningitis etc.
What scares me is the possibility that his not hearing will affect his future and make him unhappy... It is this that I would like to prevent, no matter what.
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You're coming at it from the perspective of a hearing person. Your son will never know what it's like to be hearing person hearing. CIs and hearing aids rock.....but they can only give a "fake" idea of hearing. It can be a good fasimile but it's not really hearing person hearing.
I think it was in It that Stephen King wrote " A child blind from birth doesn't know they're blind, until someone tells them."
I'm HOH, but I still don't have any idea what it's like to be hearing, even thou I have a lot of residual hearing. I hear like a deaf person.
 
iowaboy said:
Yes, good points. It was sponsored by the Bionic Ear Association, which is owned by one of the cochlear implant companies. Just as the HLAA meeting attendees are likely to be self selected because of the issues you describe, the BEA attendees are likely a self selected group who are satisfied with their CI. We were certainly there because of how satisfied we are with the level of communication the CIs are giving our daughter. I know there are people who don't get a good response from CI- I've met a few, but I've also met several at the other end of the spectrum, given similar histories, etc. We continue to be amazed at how the technology is helping our daughter communicate. I feel like we expected an inch and were given a mile.
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Well then again Iowaboy that just pretty much reinforces the fact that response to CI varies tremendously, just like with hearing aids. There are quite a few functionally hoh kids with CIs yes, but there are still kids who don't respond as well.
 
Jazzberry said:
From what I observed, I think the best way to prevent that is to teach him ASL regardless if he ends up having a CI or not.

IMHO, its good to be able to have a way to communicate that is effortless (even if he won't be able to use ASL with everyone he knows).

CIs are not quite there from what I've seen. From what I observed they have the effect of making most people hard of hearing so that means that they will not be able to hear as well as a hearing person especially in noise, within a group, and over distance. There are always outliers of course. Some people get no benefit and there have been reported cases of people hearing almost as well as a hearing person. I've met a few people who went for the CI and did not get any benefit; I have never met anyone who ended up hearing as well as a hearing person. I've met many people who ended up in the same situation as a hard of hearing person who wears hearing aids -- how well they actually hear does cover a wide range.

Earlier this month I went to an HLAA chapter meeting that ended up being half meeting and half party. The party part didn't work out too well -- most people could not hear well in the room once everyone started talking and many left early. I thought that was sad. For whatever reason most HH people don't use the type of ALDs that interfaces a handheld mic to the hearing aids and allows many to hear really well * and almost all of the HH people at the meeting did not know sign.



* That type of ALD allows you to hear better assuming that you do well on the test in the audiologist's sound booth that determines how well one can understand words. It's called a word discrimination test and should be part of the set of tests one gets while taking an audiogram, well for people who are old enough to have a vocabulary. At 18 months your son is too young for that test.
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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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