TASH p. 6 this n that

[Guest guest]

TASH part 6 This n that

Inclusive education, person-centered planning, self-determination, etc.,

were also very prominent in the different sessions, and are more or less a

given that people who belong to TASH support these practices. There has

been a lot of dialogue around how to better support families who are really

struggling to have their kids included. (See " best practices " a few notes

back.

Lots of people with significant physical disabilities who are accessing

avenues to " gain their voice " and live their own lives. Also, a lot of

adults with autism doing this too. At this conference I did not see a

large number of adults with DS, although there were several significant

presenters with DS. (One read a talk from her laptop at one of the keynote

speeches around what kind of life she wants for herself, another is a

friend of mine who is taking classes at a cummunity college.)

Outside of things that would be directly related to our kids with

DS-autism, I spent time with some folks discussing the new courses being

taken in support of disability rights. There is some fear that the new

generation will become complacent and not realize how hard won each step

has been. The underlying current is that TASH continues to be the standard

bearer in support of persons with *significant* disabilities. Individual

supports for specific disabilities are all well and fine, but for those

people who have no voice, there is a sense of " we must remember what

happened to people in institutions, in segregated settings, who are unable

to defend themselves. Never again should history be allowed to repeat

itself " .

Parents voices do need to be heard at TASH, because we are the experts

around what our children and loved ones need. But we do need the support

of teachers, friends, and yes, researchers, who stand by us. There is a

gap- somewhat- between the university types who might seem to be

self-serving in what they do- but there are plenty of people with heart who

are inviting some good, hard thinking around some of our most puzzling

problems.

I had a great time meeting other parents with puzzling kids- clearly, we do

not own the rights to that " label " . However, I must say that for the first

time I felt much more closely allied than I have in the past around some of

the issues specific to autism. I had only been paying half a mind to some

of these things- sort of like " Ben has autism but not really " .

I met a woman from a small college in Syracuse (LeMoyne) who is studying

early possible indicators of autism. She was very interested to hear about

our kids and not at all surprised. I told her about the listserve, about

ongoing concerns of ours and about the research of Dr. Capone and others.

I also heard a lot more reference to literacy- there were about 3 sessions

dealing with this topic. Increased access to augmentative communication

means that more kids than ever thought possible are using print or visual

aids to learn about their world. (Another blow for stopping with purely

functional curriculum for some of our kids). But the real message seems to

be " Aim high. Aim expectations very high. Our kids are ABLE to rise to

the occasion. "

So far as stuff goes, Joan spent more time at the exhibits than I did,

although I did buy a lot of stuff at " Kinetic Kids " also. The coolest tool

that I found is a wristband that hold four pictures (such as pic-syms) and

can record up to 75 seconds of messages. This TalkTrac will be available in

January from

Ablenet is the company. Affordable at $65 compared to a lot of pricier

things.

I am still digesting tidbits of conversations, points of contention between

some folks, new ways to think about the future (i.e., college as a good

environment for young adults who are not yet ready for the work world.

There was lots of discussion and some real plans in action already around

that. Don't count your kid out, either! This is really evolving.)

I loved seeing all of this technology in action. No excuses that someone

had not bothered to learn the program or how to work the equipment- one big

message I picked up was " machines are our friends! " In fact, for the first

time ever, *I* was able to contact my DH who is deaf using a tiny TTY-

actually a two-way pager. It was wonderful to be able to be freed of a

third party, a pre-planned calling time, or unreliable equipment to talk to

him. We can talk to each other whenever we want now- " Just like everyone

else " . I got it at Radio Shack- it's a Motorola " Talkabout " and is a

WebLink Wireless pager. Finally we can use mainstream technology to stay

in touch. Very cool indeed.

MB