----- Original Message -----
From: Betty Alfred <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, June 06, 2000 12:48 AM
Subject: Re: June's Admin notes

> This era will be the turning point.  From sadness, heartache, isolation
and
> exclusion, will emerge a thunderous victory for a unified people -- the
> largest minority in the world!
>
> Internet is a powerful and mighty tool!


I have mixed feelings about this. Alexander Omega is the last of my 7 kids
 now you know where he got his middle name :-) ) We originally got the
computer to help my oldest son with his dyslexia. The kids pulled me kicking
and screaming onto the cyber highway the year that Alex was born. Now those
same kids have to compete with me for the computer and since I'm the mom I
get first dibs!!!!.
After I finally learned how to use it (  took about 5 months to learn what
the inbox was and how to open it...hey I had mail, old mail but  mail just
the same). Then I learned about disability lists for kids. The first list I
found was the gtube list. Wow I wasn't alone and it wasn't my fault despite
what the doctors made me feel. I felt the security in numbers and I could
get the info that was scientific enough for the doctors to sit up and start
paying attention to what I was saying. It enabled me to become a much better
advocate for Alex than I would have been otherwise.  Of course I went on to
find the Our Kids, CpParent and C-Palsy lists and all provided me with more
information and shared comradeship. I even got to meet people in person that
I met on line originally which was really neat. However despite or maybe
because of it, once I walked away from my screen and out the door with Alex
I felt very lonely. Where are all of you????. Alex  just turned 5. He has
been in early intervention classes since he was 5 mo old. In these past 5
years, even being in special ed preschool, with all special need kids, he
has been the only one who could not walk. The only one with in a WC. I've
often felt that he was the minority of the special needs group. He did too.
Just recently he asked his oldest sib how come she could walk on her feet
and he couldn't? He knew the other kids stood at the sand table and played
with ease and he couldn't. And this was among others considered disabled.
I'm not trying to imply that Alex's disability is greater, worse , whatever
than the kids that were walkers, just that his non walking made him obvious.
In these past 5 years I have found that disability aids like a WC, hearing
aid, braces, etc are becoming more common and acceptable, much like
glasses,. The specific disability however is not and still causes an
automatic response of pity and assumption that mental incapacity  must
accommodate any disability. So as comforting as the internet community and
family can become it still leaves me feeling a bit schizophrenic at times.
The on-line world and the outside world don't always match up.
Joanne