Terry,

Whoaaaa now don't get me started!!!!! Don't listen to NEGATIVE TALK
from all these people who should know better. The real problem is
that most "professionals" don't know much about kids who have AS
or may have AS.

My daughter Bethany is 22 years old and is only now making some of
the best progress of her life. She too was "written off" years ago
because of lack of diagnosis. Retarded and cerebral palsy were her
catch words. Nothing much to work with here was the resounding
chorus! DON'T BELIEVE IT !!!!!!!!! NOT EVEN FOR A MINUTE !!!!!

Gosh, Mandy is young. First thing you need to do is get her going
with the (PECS) picture exchange system. She is very interested in
photos of the family and toys. This is your in. Just spoke with the
speech therapist this past week. She kept saying that you've got to
have an "in" with the kids. Bethany also likes pictures of the
family and her toys and her favorite things to do. There is plenty of
info on the internet and through previous emails regarding the PECS
system. Find out as much as you can and then let the "professionals"
at the school know about it, if they don't already. This is good
for Mandy, it can "rock her world"!

There are lots of kids on the list who are pretty fast movers with
PECS and signing. Bethany is not FAST (except when it comes to
crawling).
These pictures have taken a long time to get going with her. However,
now
she is making choices and also giving the icons back to the exchange
partner (mom,dad) also to her Nanny and babysitter. She is also
starting
to use her Big Mac's. Especially the one that says "Kit Kat Candy Bar
please". She has done this two nights in a row now, all by herself,
YES,
she was the one initiating this thought! She found the yellow big mac
on the floor,pushed the button and I responded, (I waited for the big
mac to be activated twice so I knew it was real on her part and not an
accident. Her speech teacher has been working with her for about 6
months
now and it is carried out throughout her school day and at home. This
is so much fun for our lovely Bethany to be able to convey her own
thoughts!

She also knows the sign for drink and food. She can't really do it
herself,
But if I make the sign and say the word she understands it.

DO NOT LET ANYONE WRITE YOUR DAUGHTER MANDY "off".

Somehow you need to laminate the photos (keeps the kids from crunching
on
them and bending them all to heck). Laminators are not that expensive.
Perhaps even the school has one and you can use it or someone else you
know
or from work, etc. We had a guy from my husband's job who laminated
Bethany's.
Now we have a laminator, thanks to our local AS group! Also, if you
have a
video camera with digital this works great for making the photos! If
this
is not available use regular laminating sheets. They can still be
slightly
crunched by the kids, but better than nothing.

There is no way that Mandy has peaked in all areas at ony 9 years old.
The
"professionals" have "pooped out" me thinks.!!! There is so much more
for
your daughter to learn, don't give up! Keep her in school, everyday if
possible!

Get your ducks in a row and then call another IEP.You can call your
own,
just in case you didn't know. You don't have to wait for the "egg
heads"
to call one once a year.

Don't leave this list. There is a wealth of information here and I
swear
you can't get it any place else. I know we can all get going
sometimes,
but all in all I think we are a great group of people! We really want
to
help each other.

By the way I had been gathering info about the PECS system for almost
a year from this listserve and from the internet before I really
approached
the school system about it. Don't wait this long!! Tell them you know
about it(gather info to give them). TELL THEM TO START THIS PROGRAM
WITH
"MANDY", NOW!!! This could be a long process with her and then again
maybe
not, our kids can fool us sometimes!

Hey, don't feel too bad about having a bad day, I could make a million
bucks
by selling all my "bad days", but I don't think I'd have any takers!
hahaha!

If ya need to talk again, let's do.

Penny & Bethany Exner 22 del+ (where do you live?)
Allen Park, MI

Schnsr1@... wrote:
>
> ----------------------------------------------------------------------
>
> Subject: level of cog. functioning
> Date: Mon, 12 Jun 2000 09:33:50 EDT
> From: Schnsr1@...
> To: angel-l@...
>
> I know I shouldn't get into the habit of comparing my child to others, but
> since the short time I've been a part of this list, I'm feeling like so many
> of you are having successes that we are not. Mandy (9.6 del+) was just dx
> only weeks ago. Thanks to the internet, no thanks to any of the professionals
> in her life.
>
> Most of Mandy's cognitive functioning is in the 12-18mo. range. She's never
> said a word. She doesn't sign, and we've had no success w/ pictures ( she'd
> rather crunch them up or chew on them) although she loves looking at pics of
> family members and toys. Her PT, OT and speech therapists have all
> discharged her long ago saying basically there was no more they could
> do---she had "peaked" in all areas. Maybe if we had a dx long ago, we would
> have been able to serve her better.?? She is in a CD class at school (6hrs.
> 5 days per wk.) They go to music and gym w/ the Kindergarten and attend
> special all school things. There are only 5-6 kids in the class w/ a teacher
> and an assistant. She loves school and has learned so much as far as
> following routine, paying attention for longer periods, and becoming a social
> being. Sometimes though, the school day seems too long and tiring for her.
> She certainly is not getting anything out of studying the"letter, number
> color... of the week". I believe tthere have been a lot of positives that
> have come out of this school setting, but I don't have anything to compare it
> to. A reg. ed. class for any period of time is out of the question. I
> couldn't even imagine Mandy sitting in a desk (w/out being tied in to keep
> her there :) ). Mandy basically needs one-to-one supervision at all times.
> At her last IEP, when at the end it was stated rather routinely that "Mandy
> would attend the CD class 5Xper week... I asked, is there another choice?
> Everyone there looked dumbfounded and didn't know what to say. I feel Mandy
> would better to be in school maybe 3 mornings a week and have some type of in
> home therapy 3X a week for a couple of hours. Will Medicaid pay for such
> therapy? Does it exist? Thanks to anyone who has taken the time to read
> this long writing. Any comments? Maybe I,m just having one of those feelin
> g like I'm doing it all wrong days.
> Terry, mom to Mandy and 3 more