Canadian Penny, HELLO, from USA Penny,

I would like to know how you got the tape of Dr. Calculator's
presentation from Philadelphia last year.

Let me know, please.

Thanks, Penny USA
Bethany 22 del+
Allen Park, MI
pclipper@... wrote:
>
> Terry, I think some of the other listserve members will probably want to talk
> about inclusion, so I'll skip that aspect. Regarding communication, It takes
a
> long time, and I think I read once that all developmentally disabled kids go
into
> plateaus where years can go by and it doesn't seem like they've learned a lot.
> One thing we do know is that angels keep on developing for a long time, so
it's
> not as if they have to have accomplished everything by the time they are 17.
> Professionals that give up on a nine year old because she has 'peaked' need to
> know this. Also, those who take a standard developmental approach, and
assume
> someone is functioning at the 18month level in all areas because they can't
stack
> blocks or because they lack a lot of expressive language is NOT a good bet as
a
> professional for your child. It might help for your speech paths, etc. to
learn
> a bit more about angelman syndrome. I think I did print out Robin Alvare's
study
> from the ASF home page to share with the school. They need to be aware that
the
> level of comprehension can be quite high: Ian has been able to sit through an
> entire movie and laugh at the right places for many years, but try to get him
to
> sign, and you'd think he was hardly there! I have learned that words and
their
> equivalents are hard for him, but his ability to size up body language and
what is
> presented in front of him is very good, I think close to age appropriate. I
> believe that Ian also has very good problemsolving skills when he is motivated
to
> try to accomplish something, and he has a sense of humour, which really
requires
> some higher cognitive processes. He is just hampered from expressing these in
a
> wide range of ways, but it gets better!
>
> It takes many many repetitions to learn a few things, and for a lot of our
kids,
> signing is possible in a vague, approximate way for a few concepts that are
really
> important to the kids themselves (i.e. bath, more (as in food), bye (as in I
wish
> you'd go home so mom would pay more attention to me), rain (because I love
it!).
> Ian knows there is a sign for 'dog,' and sometimes does something like'bath'
or
> 'please' (I don't know how they ever taught him that one!) a bit lower down on
his
> body, but he has never ever been able to do it for some reason. He knows
there is
> a sign for it and what signs are, but somehow learning and retaining them is
very
> difficult. I do not believe that this is an indication of his actual
> 'intelligence,' but of one or two particular learning difficulties that he has
> which are specific and not across the board so far as his abilities go.
>
> I do make a point of talking to him with the assumption that he understands,
> particularly when we are talking about what is concrete and here and now, and
it
> may have been wishful thinking way back when, but he does understand a lot
now.
>
> We are working with picture symbols, but it takes a long long time for him to
> learn a new one well enough to differentiate. I have seen Ian progress from
using
> switch toys (of the Radio Shack variety) to pushing a Big Mac to say 'good
> morning' and a few other things, and I think that this can be a good direction
to
> take, with the ultimate hope that they can use an electronic talker to get
some
> messages across (Ian points quite well, so this was a strength that could be
> worked on). . Many angels won't learn to sign well enough for anyone but
family
> and close intimates to recognise what they are saying, and this isn't
necessarily
> because they are not 'trainable,' but because a lot of them have fine motor
> difficulties and some other blocks for that kind of comprehension and motor
> memory, but there is lots of communication work that can be done.
>
> Dr. Calculator has received a grant from the Angelman Foundation to do some
work
> on something that he calls "Enhanced Natural Gestures," which I think has good
> potential for angel communication. He made a presentation on this at the
> Philadelphia conference last year, and I ordered the audio tape of it. I
thought
> it was quite inspiring, as was his other presentation on Augmentative
> Communication.
>
> You know, I think you might need the inspiration of a conference! I'm not
sure
> where you are, but have you considered coming to Vancouver this August? They
often
> provide inspiration.
>
> Hope this helps,
>
> Penny (Ian 13.4 UPD) Calgary Canada
>
>
>
> 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
>
>