[tri-med] Re: Aus Alex's Hearing and CAPD

----- Original Message -----
From: <NanlorW@xxxxxxx>
> That is really interesting to me. I have seen Dom "switch off", but I
always
> thought it was behavioral.

That was always a possibility - but the EEG and neuropsych testing says
otherwise. At the moment we know its not a seizure (resembles a petit mal)
because you can get his attention again. During testing it occurred mainly
in one situation - overload - when he was just processing too much
information you could literally see him "switch off" as if he were gathering
his thoughts, usually he would just pick up where he was, but after a LONG
pause, but at other times he would perseverate.
One thought is that he "loses" attention - thats what we are leaning to -
that its neurochemical and essentially an attention defecit problem
(simplified he has x amount of neuro transmitters and when they run out he
loses attention). The ped wants to try a stimulant - not sure yet - the mum
jury is still thinking............

>> But he
> would "act" as if he really got every nuance of everything that was going
on
> around him. I think the key word here is "act". He always has said he
doesn't
> learn by having someone teach him something, he learns by doing it
himself.

OH YES!!!!!!
With Alex we call it "passing" - he "seems" to get so much but doesn't.
Again two possibilities with this - one is that the info doesn't make it
into long term memory - Alex has always had a good memory - too good at
times. But in the last 12 months we have seen this deteriorate until its now
almost non existent. For example 12 months ago if he understood something he
would remember it straight away and for forever - now unless you drill it in
(during testing it took three drills) it doesn't make it into long term
memory.

Another problem with Alex is that he is very skill specific - generalisation
doesn't just happen like it does with other kids. A very simplified example
is that Alex has been taught his colours - he knows what black, white and
grey are and will tell you a zebra is black and white. However if you asked
him what colour our cat was he wouldn't be able to tell you (he is black
white and grey)

> Getting back to phasing out....now that he is living at home, he sometimes
> seems more in a fog, less likely to catch on to the abstract stuff, in
fact,
> more relaxed or maybe just not hyper-vigilant.

This also seems to be Alex's problem - he is losing that "sharpness" but
very dramatically. To date we are seeing it as an attention problem - to pay
attention he is using self stim?? eg when he is trying to remember or has to
pay attention for long periods he will kick, pick his fingers, rock his
chair back and forward, fidget or whatever.

>>His favorite pass time at home
> is watching movies, and he likes to watch them in the family room because
I
> am usually nearby and he can ask me questions about things he doesn't
quite
> get. Sometimes the questions are very basic, like about what is real and
what
> isn't. Stuff I would have thought he understood clearly years ago. Or
maybe
> sometimes he does know and sometimes he doesn't. Does this make any sense
to
> you, Karen?

Definitely - and if you phrase the question the right way you know that he
really does know - he just didn't know how to either get the info out of his
memory or to relate it to a different situation??

eg Alex may see an ad on TV where a cat sits up at the table with a knife
and fork in paw to eat dinner. Alex will using his "passing" technique to
ask you if Kitty could do that? You explain and Alex talks as if he totally
understands the whole concept that animals can't sit up and eat with a knife
and fork. But the next day if the ad were a dog doing the same thing he will
ask you if he should give Jasmine (our dog) a knife and fork to eat her
dinner. Both situations he should know with his level of understanding but
which seem to be known superficially or cannot be generalised from one
situation to another.......... If you explain again he will listen and then
say "oh like Kitty can't" (this isnt a real example - just a hypothetical
and very simplified example)

It IS hard to explain - but I know EXACTLY what you mean - mmmmm they do
seem so much alike in this regard!!!

A rich child often sits in a poor mother's lap.
  -- Danish Proverb

Keep Looking for Rainbows!!!
Karen, Mum to Alex (8, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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