nhusain@hubcap.clemson.edu (naved husain) (07/03/90)
Index Number: 9019
Hi,
This is just to say hello to all of you.
I am an international student at Clemson university. and have been
following discussions on this group for a long time, but this is my
first posting here( and I sure hope I don't mess up this posting !!).
I have polio in my right leg. I had it since I was 2 years old. I am
here to continue my studies in electrical engg. I would greatly
appreciate if someone could post information regarding the groups or
organisations or medical facilities available to polio patients.
Bye for now,
Naved Husain
Martha.Johnson@f778.n115.z1.fidonet.org (Martha Johnson) (10/12/90)
Index Number: 11071
Glad to see you here Rob. I also have a guide dog, a chocolate lab,
Named Heather. I also have a cat and a bird. I have been blind since
birth and was employed for 17 years in a photo lab. I have been out of a
job since April 13, Friday, of 1984. I got this computer in 86 or 87 and
have been on these boards around 2 years. I too, enjoy talking to
everyone here and a couple of other echos as well. Keep talking you will
get a lot of support and friendships here.
Martie
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!115!778!Martha.Johnson
Internet: Martha.Johnson@f778.n115.z1.fidonet.orgCleta.Gilchrist@f9.n393.z1.fidonet.org (Cleta Gilchrist) (12/06/90)
Index Number: 12336
[This is from the Silent Talk Conference]
Hello,
I've been reading this echo for a while now, and the sysop of the
board where I read it has suggested (repeatedly) that I post here -- so, since
its the middle of the night and I don't feel like sleeping or doing homework,
I guess I'll jump in with both feet. Be prepared to be bombarded with a long
message.
All my life I've had trouble hearing things that other people said
were going on. Years ago I gave up trying to explain to people that I wasn't
really ignoring them, I really didn't hear them. A couple of years ago, the
doctor at the University I am attending suggested that I go to an ear
specialist, and when I did he confirmed what I wasted a lot of breath trying
to tell people -- that I have a hearing loss. In fact, it is bad enough
that Rehab is now arranging that I no longer have to pay tuition. I'm ashamed
to say that I don't know all the specifics (i.e. numbers and statistics) but
the way the doctor explained it was that my I hear things that are shouted
about the same as other people hear what is spoken in a normal voice (if that
didn't make much sense, please remember that it is the middle of the night).
At first, Rehab was going to get me a hearing aid, but it seems that a hearing
aid will not help me. Now, they say that I may be able to have my hearing
loss halted, and possibly my hearing restored, through surgery -- I should be
having the tests very soon. The whole thing has not been explained to me
completely (or if it has, I have missed some of the information -- as happens
to me so often). Believe it or not, it is actually a relief to be told that I
really DO have a hearing loss, since I now feel vindicated after all those
years of being bugged for "not paying attention". People just didn't
understand why I seemed to be able to hear fine one day and not tell what was
going on the next. Much of my understanding of what went on around me for all
those years was the result of lipreading that I often didn't even realize I
was doing.
Now that I have bored you all to death, I will come to my REAL
problem. I have a 13-year-old boy whose hearing is (I am certain) MUCH worse
than mine. He had tubes in his ears the first time at age 2, after which he
finally learned to talk. My problem is that we have no insurance (my husband
works for a small company that carries none) but we make too much for such
things as Medicaid and city/county medical care for the "indigent". (How I
hate that word, we work HARD to get by, if anything we are among the "working
poor".) As of yet I can't find any agency that can help us get our son's
hearing problems properly diagnosed/treated until he is at least 16. Does
anyone know how to get information about place to go to get such help. The
school nurse is always after me to do something, but has no new ideas about
where to go for help. If I didn't consider it so important to have something
done NOW, I would just wait until I get my degree and handle it myself after I
get a good job, but it seems almost criminal to make the poor child wait, and
I feel guilty having something done about my problem when his seems so much
worse.
Re-reading this message, it comes off as a terrible sob-story, and I
apologize for that, but I would really welcome any ideas you can come up with.
Thank you,
Cleta Gilchrist
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!393!9!Cleta.Gilchrist
Internet: Cleta.Gilchrist@f9.n393.z1.fidonet.orgJames.Womack@f14.n300.z1.fidonet.org (James Womack) (12/07/90)
Index Number: 12371
[This is from the Silent Talk Conference]
Greta, your story is not s sob story. I only wish I had more time to
go over your post. Deafness is one of the most misunderstood disabilities
there is. Your experience is just another peg in the board that proves
this.
Since I don't really have enough time to answer all the questions you
asked (I come in to pull stuff off as teaching material for my college
Psychosocial Aspects of the Deaf class) let me make a suggestion only
at this time. Go to the nearest school for the deaf and see if you
can get an audiologist or a teacher to answer someof your questions-especially
concerning your child. There is a woman here in Tucson who had the
exact same experience as you did. She ony recently shared it with my
class as a guest speaker.
Posting here was a good idea, I am sure someone will respond more fully
than I have. Don't give up on me, try me again later. When I have more
online time, I would be happy to explain what I know. I am deaf myself
since age 13.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!14!James.Womack
Internet: James.Womack@f14.n300.z1.fidonet.orgJames.Womack@f14.n300.z1.fidonet.org (James Womack) (12/11/90)
Index Number: 12438
[This is from the Silent Talk Conference]
Greta, your story is not s sob story. I only wish I had more time to
go over your post. Deafness is one of the most misunderstood disabilities
there is. Your experience is just another peg in the board that proves
this.
Since I don't really have enough time to answer all the questions you
asked (I come in to pull stuff off as teaching material for my college
Psychosocial Aspects of the Deaf class) let me make a suggestion only
at this time. Go to the nearest school for the deaf and see if you
can get an audiologist or a teacher to answer someof your questions-especially
concerning your child. There is a woman here in Tucson who had the
exact same experience as you did. She ony recently shared it with my
class as a guest speaker.
Posting here was a good idea, I am sure someone will respond more fully
than I have. Don't give up on me, try me again later. When I have more
online time, I would be happy to explain what I know. I am deaf myself
since age 13.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!14!James.Womack
Internet: James.Womack@f14.n300.z1.fidonet.orgGerry.Grimm@f71.n343.z1.fidonet.org (Gerry Grimm) (12/11/90)
Index Number: 12439
Hi...saw your note on our Seattle Hearing Impaired BBS and your situation is
one that I can relate to...sounds like you're being readied for a cochlear
implant by your doctors. If that is the case, it may very well work well for
you. It does for me and several others I know here in the Seattle area. I
have a Nucleus Corp. cochlear implant and am able to understand most speech in
a one on one situation. Like most hearing aids, it's not of much use when
there is a lot of background noise, but it has an adjustablevolume level which
can help to filter out some of the background sound. It works well enough for
me that with some people, I can understand some speech over the phone.
It's not an inexpensive treatment however...the cost for the implant device
and for the surgery and followup work with an audiologist can easily reach $20-
25,000. Most major insurance plans cover the cost to about 80% of the total.
As for your son, I suggest that you start contacting as many funding sources
as possible. Many cities have community groups such as Lion's Club, Elk's
clubs, and so on that devote much of their fund raising activity to supporting
people in situations like yours. I suggest you contact the service agencies
in your city that service the hearing impaired. These are non-profit groups
specifically set up to service the hearing impaired...if nothing else, they
may be able to direct you to sources that could help finance the cost of the
care for your son. Other sources of funding might be available from donors of
money to various causes (ie. public and corporate foundations) or to
individuals in need...ie. the Minneapolis millionaire who writes a newspaper
column about his gifts to people...I forget his name at the moment, but you
should be able to find his name and address from your local newspaper.
In any event, it will require some effort on your part to find the funding for
your son (and perhaps yourself as well), but I think you'll agree, it's worth
it. Best of luck....
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!343!71!Gerry.Grimm
Internet: Gerry.Grimm@f71.n343.z1.fidonet.orgJay.Croft@p0.f147.n109.z1.fidonet.org (Jay Croft) (12/11/90)
Index Number: 12441
[This is from the Silent Talk Conference]
Perhaps you or your husband should try to get a job with a company that
does pay benefits.
Check out the laws regarding PL 94-142. The school district is
obligated to provide your son with a "free appropriate public
education."
Try the Community Chest (or whatever it's called now) office for a
referral to an agency that might provide a hearing aid. However, those
little machines do not bring perfect hearing. As another caller has
said--it just bombards the ear with sound waves.
And everyone in the family should learn sign language. It won't hurt,
you will make some interesting new friends, and it will definitely help.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!109!147.0!Jay.Croft
Internet: Jay.Croft@p0.f147.n109.z1.fidonet.orgJames.Womack@f14.n300.z1.fidonet.org (James Womack) (12/21/90)
Index Number: 12538
[This is from the Silent Talk Conference]
Do try to get him to log on. He himself may be able to explain things
that even you as a mother may not be aware of. Aagain I am on the fly
as I come online. Be aware that what I say is merely my view of matters
regarding deafness. It is backed up by my training and experiences
, true, but still boils down to a personal philosophy.
If your son's hearing loss is progressive, try introducing him to other
deaf people so he will become aware that he is not alone. Try to bring
him to gatherings such as clubs to get an idea of the kind of activities
he might engage in. They vary:sports, civic activities, actvitist groups,
recreational gatherings, alumni meetings etc etc. The more deaf people
he meets, the greater the variety so he can get a fuller picture. He
will come to see that we are like anyone and so is he. Some of us are
fantastic people and some aren't-just like other folks. We have dreams
, hopes and do a lot daring and mundane things as anyone else and so
should he. Basically, he should just meet others like himself so thatif
the deafness prgresses to a point where communication is overly difficult,
he will have an alternate circle of people to turn to so he doesn;t
feel shut out.
It will be important that he develope an attitude of respect for deaf
people and our ways. I say this because often previously hearing people
and oral deaf people come to a deaf group with an attitude of superiority.
They feel because they can/could hear or can speak better, they ARE
better. This makes for some very frustrating experience for such persons
and understandably so. No people like being treated this way. They
key for your son is adjustment to his loss and to the new circle of
people he might find will fill in his social needs and offer support.
Perhaps if you question me specifically, I will be able to give you
a less rambling answer. Aagain, make yourself aware of the various
educational services for the deaf so you can make a decision later
on what best fits your child's needs. In other words, educate yourself
on education.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!14!James.Womack
Internet: James.Womack@f14.n300.z1.fidonet.orgJames.Womack@f14.n300.z1.fidonet.org (James Womack) (01/09/91)
Index Number: 12717
[This is from the Silent Talk Conference]
Cleta, your son's defensiveness is natural. He will go through phases
that can include anger, denial, self-pity, blaming and for many, eventual
acceptance. It's a natural process.
I am very happy to know that his classmates are supportive. A lot has
changed in schools these days. I think more students are more sensitive
to people with disabilities and that's just great. I think your son
is going be just fine with so many people pulling for him and having
a mom like you. He's going to be fine.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!14!James.Womack
Internet: James.Womack@f14.n300.z1.fidonet.orgCleta.Gilchrist@f9.n393.z1.fidonet.org (Cleta Gilchrist) (01/09/91)
Index Number: 12719
[This is from the Silent Talk Conference]
JW> Cleta, your son's defensiveness is natural. He will go through phases
JW> that can include anger, denial, self-pity, blaming and for many,
JW> eventual acceptance. It's a natural process.
JW>
I just hope he can get over the bad parts as soon as possible. He has finally
realized that his hearing loss doesn't mean that he is stupid, so I think he
is on his way.
JW> I am very happy to know that his classmates are supportive. A lot has
JW> changed in schools these days. I think more students are more sensitive
JW> to people with disabilities and that's just great. I think your son is
JW> going be just fine with so many people pulling for him and having a mom
It IS good that attitudes have changed so much. It could be so much worse.
Cleta
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!393!9!Cleta.Gilchrist
Internet: Cleta.Gilchrist@f9.n393.z1.fidonet.orgStu.Turk@f26.n129.z1.fidonet.org (Stu Turk) (01/26/91)
Index Number: 13213
[This is from the Silent Talk Conference]
JC> You can get the latest TDI directory; they list nationwide 800 numbers.
I've never heard of this Jay. What is the TDI directory and where do you get
it? BTW: I actually ment to ask if anyone had a _ASCII file_ of TDD 800
numbers, not a book.)
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!129!26!Stu.Turk
Internet: Stu.Turk@f26.n129.z1.fidonet.orgYvonne.Smith@f902.n714.z3.fidonet.org (Yvonne Smith) (01/31/91)
Index Number: 13259
Hi everyone. I have just got back in to this echo after not being
here for about a year. It probably wouldn't have been to memorable
to most of you though <grin>. A new years resolution I have is to
b_e able to read this echo regularly <grin>.
So I decided instead of beating around the bush I'd write a
message telling a littlke about me.
I am totally blind and have been from birth but probably break the
record for the youngest participant in the echo being only in year
9 at high school.
Can't exactly say I have any friends at school BTW the school is a
normal high school> but it isn't from lack of trying. My attitude
to getting on with those of my own age is be polite but not try too
hard. I found it too hard to be trying to make friends with
everyone and getting nothing back. As it is now I am an active
participant in quite a few boards here in Australia and as a result
have quite a few friends round here who are in the habbits of going
out to BBS events with each other ranging from BBQs Zoo trips and
movies and others.
I use a erueka as my computer both at school and at home. And it's
served me well.
As for the weather well don't complain about the cold when talking
to me <grin> would you mind sending some of your cold weather to
this side of the world please <grin> we need it desperately. Itr
must be easily 37 degrees celsius maybe not now but that would have
been about the temperature today and that's the normal temperature
<grin>. Oh well you can take this hot weather if you likie. The
only reason I like it is that it enables us to go on more BBS
outings <provided it doesn't rain>.
Oh well I'll leave it at that cause I know the volume of this echo
is enough as it is <grin>
Seeya
Yvonne
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!3!714!902!Yvonne.Smith
Internet: Yvonne.Smith@f902.n714.z3.fidonet.orgDavid.Goldfield@p0.f1089.n261.z1.fidonet.org (David Goldfield) (06/18/91)
Index Number: 16189
[This is from the Blink Talk Conference]
I know I have mentioned this here and there on the echo, but I wanted to
let everyone know that I am now employed at Blazie Engineering as a
technical support rep. From time to time I see people discussing
Braille 'n Speak. I know Bryan leaves messages here already, and I am
not trying to steal his thuinder, nor am I trying to turn the echo into
a constant advertisement for Blazie. However, if you have any questions
concerning Braille 'n Speak and our other products, I will do my best to
answer them If I can. We also sell software such as Speaksys, Jaws,
Vocal Eyes and Asap which i see frequently discussed here as well.
That's all. We now return to our regularly scheduled program!!!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!261!1089.0!David.Goldfield
Internet: David.Goldfield@p0.f1089.n261.z1.fidonet.orgRichard.Dale@f140.n150.z1.fidonet.org (Richard Dale) (06/21/91)
Index Number: 16317
I work with students with physical disabilities using assistive technology.
Just wanted to say "Hi" and maybe get some dialogue going...
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Richard.Dale
Internet: Richard.Dale@f140.n150.z1.fidonet.org