cim1@pyuxv.UUCP (G. Bogatko) (08/30/85)
I want to put in a couple of cents about a new net group for handicapped kids. My first child has a 50% hearing loss. It affects him in the frequency ranges necessary to pick up sounds like "k" and "s". We did not start corrective measures until he was 3 because of a few things. He taught himself to read our lips. That meant that he understood us when we said things to him. There is no history of hearing loss in either my wife's or my side of the family (that we can trace). We *do* have a history of late talkers. He was able to say things, and we were able to understand some of it, but things like "mouse" came out as "mou`" and "speak" as "`peak" Needless to say, as new parents, we were not as expert in picking up the signs of potential hearing loss as we are now, and our (previous) family doctor told us (in so many words) to wait. It was finally an excellent child pediatrics/psychiatrist who told us that he probably had a hearing loss. We then had him tested, and lo and behold, there it was. Through hearing aids and speech therapy, he will be mainstreamed in kindegarten this fall. The point of all this, is that new parents are just not as prepared as experienced parents, and child professionals, to spot this kind of trouble. Billy, until about 2 3/4 was exhibiting beheavour that was within the bounds of children his age. Other children his age were mumbling their words. The doctor wasn`t worried. He heard noises. He just didn't hear certain frequencies. This is not the kind of hearing loss that new parents watch out for, but it none-the-less impared his speech. (Incidently, in anticipation of somebody's crackpot flame about what I *should* have done, etc. etc., Folks, things are different when they become real. When it happens to you it ain't like when it happens to somebody else.) With this experience behind us, we were able to spot the fluid buildup in our 2nd child`s ears, and have it corrected, and we are watching our newest, who could probably sleep through the battle of the marne, *much like our first child*. This kind of experience should be shared with other new parents, and that`s what a net.kids.handicapped would do. G. M. Bogatko
fred@mot.UUCP (Fred Christiansen) (09/05/85)
our youngest daughter experienced a 100+ dB hearing loss in both ears as the
result of an adverse reaction to a normal childhood immunization. as she was
6 months old at the time, we were fairly soon able to perceive a change in her
sound perception (we are very active with our kids). after some "home-brew"
tests (which, in retrospect, were largely faulty), we went to her pediatrician.
the nurses all told us we were "over worked-up" (or some such), but the doctor
accepted our perceptions. he came to the same general conclusion and pointed
us at ENT's and audiologists for physical exams, hearing tests, and brainstem
audiometries.
she was diagnosed as having a permanent (irreversible), profound (degree
of loss) sensori-neural (type of loss) hearing impairment. she has not, to this
date, benifitted from hearing aids (although most deaf kids do, to varying
degrees). our contacts with the House Institute in L.A. indicate that the
cochlear implant would not likely benefit either (cochlear implant is a
substitute cochlea, requiring a basically intact aural nerve, which our
daughter does not evidently have). nevertheless, we keep in touch with medical
advances.
in the meantime, because there is so much to learn and share, we
employ Total Communication with her, and work with an excellent speech
therapist. all development tests so far (she's nearly 5) show no falling
behind hearing children (in fact, she surpasses in several areas, tho is
behind in sentence formation, a fault that lies at parents doorstep).
the upshot of it all is that our experiences frequently stand in stark
contrast to experiences of others parents with severe-to-profound hearing loss
kids. frequently doctors put off parents for years, or diagnose a child as
retarded. the result is needless development delays. many health care
professionals have no real-world experience with this sort of thing and send
parents down communication blind alleys. and, unfortunately, many parents do
not care to put forth the extra effort.
my uncle, a pediatricion, almost chokes at the failure of his colleagues
to faithfully test hearing, sight, etc., things that seem to be overlooked when
examining an otherwise intact, healthy child.
--
<< Generic disclaimer >>
Fred Christiansen ("Canajun, eh?") @ Motorola Microsystems, Tempe, AZ
UUCP: ihnp4!{attunix, btlunix, drivax, sftig, ut-sally!oakhill}!mot!fred
ARPA: oakhill!mot!fred@ut-sally.ARPA AT&T: 602-438-3472dak2@mtuxt.UUCP (D.KALL) (09/12/85)
Subject: RE: the new handicapped net Newsgroups: kids Fred Christiansen congrats. You have had an uncommon experience. Most handicapped individuals are not lucky enough to have parents and family who care and understand enough to seek out information like you do for your child. Here is some info you may already have: There was a fair article on coclear implants in the (I think) February issue of Science in 1984. You can look in Psychology Abstracts to direct you to relevant perceptual research. Psychologists do a lot of sensory research. The old "tell me your problems", is just a bad stereotype. The American Annals of the Deaf is a journal that carries relevant articles on research of all types relating to deafness. Give Gaulladet College in Washington D.C. a call or a letter. They are an entirely hearing impaired/deaf undergraduate college. What am I saying? They are THE entirely hearing impaired/deaf undergraduate college. They know a whole lot if you can find the right individuals. And they are most helpful. It helps to have a TTY when you call incase you have to talk to someone who cannot hear. Youshould try to contact a local chapter of the RID (Registry of Interpreters for the Deaf) probably called the AZRID where you are. There is an organization called (I think) WIRED in one of the lake states. I will get you there address from my files at home and put it in another post. Is there really a handicapped net? Or are we it? I sent a note to the general net yesterday saying I was interested in sensory prosthetic devices because I could not find an appropriate net.
sewilco@mecc.UUCP (Scot E. Wilcoxon) (09/13/85)
Usenet people who are interested in handicapped people are probably
interested in the bimonthly "Closing The Gap". It is devoted to
uses of technology for the handicapped, usually computer and
electronic technology. A resource directory is published yearly.
They also have a bookstore with related materials.
It is published on news paper, Aug/Sept issue was 30 pages.
Ads in that issue include voice input, special keyboards, several
companies providing services and hardware, alternate input devices,
software, books, braille devices, voice output.
All headlines from pages 1-3 of that issue:
Apple Computer establishes office of Special Education Programs
NYU creates computer-based learning program for learning disabled students
CTG's third annual conference scheduled for October 30 - November 2
Computer support for handicapped symposium planned for federal
office automation conference
IBM announces new marketing unit
The world at our doorstep
Considerations in the use of microcomputers with the severe/profound
multiply handicapped student
CSET: A National Resource
All in a day's work
Closing The Gap, P.O. Box 68, Henderson, MN 56044 Phone (612)248-3294
$18/year US, $25 Canada/Mexico (1st class mail), $36 other (air mail).
We're both involved in Minnesota education and computing, but I have no
relationship with CTG except getting their permission to reproduce headlines.
(Yeah, the law probably doesn't require permission in this context)
Scot E. Wilcoxon Minn. Ed. Comp. Corp. circadia!mecc!sewilco
45 03 N / 93 15 W (612)481-3507 {ihnp4,uwvax}!dicomed!mecc!sewilco