To Ron, how's Luke?

January 30, 2008

Best wishes to you, too, Ron! But before you disappear again, why don't you

tell us how things are going with Luke?

And for all the new members of this list, fyi, Ron is an excellent advocate for

his son and has, in my humble opinion, worked out a enviable housing situation

that works for his son and their family...approved by the state. After lots of

good advocacy and legal posturing, mind you.

Laurie

Re: ABC to Air Autism Myth Perpetuation

It's probably time (some would say " past time " ) that this thread be closed

out, but I feel I

must share one last comment. I fully recognize that (1) scientists are wrong

sometimes

and (2) that during the past several years there as been a forceful

anti-science movement

in our government. BUT, I firmly believe that one of the true strengths of

scientific effort is

that it's " self-correcting. " That is, even if current or older scientific

thinking is wrong, it

will be corrected by future scientific effort. Opinion and " belief " simply

don't (in my

opinion) share that strength. Thus I leave the topic with the encouragement

that we all

seek out the best data/information/scientific fact that we can and then act

according to

that information.

Best wishes to all -- and I'll now return to lurking until the urge becomes to

great again

for me to resist.

Ron

>

> On Thursday night, ABC is set to air the first episode of Eli Stone. This

airing

perpectuates the

> myth that vaccines can cause autism. EVERY creditable scientific

organization has

disproved

> this. Please join me in demanding that ABC NOT air the show and in

boycotting the

episode if

> they do.

> Thanks,

> Ron

>

January 31, 2008

Ah shucks Laurie - just doin' what many do for those we love -- but thanks for

the kind

words.

Re: Luke - 95% of the time he's doing quite well. Those tough (5%) days are

still present

when the SIBs seem to be in control, but I was reminiscing the other day with

his assistant

about how emotionally " flat " he was when he joined us 21 years ago (he's 30, now

- would

ya believe???). After being " institutionalized " for two years at Glenkirk (I

know they've

improved over the years, but it was not a good place then) he was like so many

people in

institutions - no emotion of any kind. Now he's a loving and happy guy most of

the time

and a joy to be around even though there's essentially no communication of the

usual

kind. We're fortunate in that the assistant I mentioned above truly likes being

with Luke

and has been a constant for about 2 years (a record for folks in that job).

Concerns

Like many of us, we worry about what happens when we're too old, too sick, or

too dead

to be of help to Luke. In the meantime, our basic philosophy is to try to make

each of his

days as " good " as we can. (I recognize that others think more effort should go

into " long-

range planning " but our priority is what it is.)

Issues

A current issue is that all-too-often problem of finding a doctor. This problem

is

exacerbated by (1) living in a relatively small town and (2) Luke having to rely

on those

VERY few docs who will accept MediCaid payment. The need is for a good

GP/Internist

since specialists are available 50-60 miles away. But finding someone to just

competently

handle yearly physicals and minor illnesses is the problem. (His current doc

admits to not

feeling " comfortable " in treating Luke because he has so little experience with

people who

as severely involved as he is.)

Failures

I once said that before I died I'd have an impact on getting more " companion "

restrooms in

Illinois --- or (dreamer) the entire U.S. I felt that these would be so useful

not just to us

parents of special needs kids, but to senior citizens (I tried to get the AARP

on board),

those with temporary needs for assistance, etc. Carol Braun (remember her) was

the only

person with any clout who showed any interest, but obviously that was

short-lived and it

went nowhere. Soooooo, any of you young folks out there want another " cause, "

here's one

to take on.

Anyway, that's the news from this front - sorry to ramble, but again thanks

Laurie for

allowing the chance.

Ron

> >

> > On Thursday night, ABC is set to air the first episode of Eli Stone. This

airing

> perpectuates the

> > myth that vaccines can cause autism. EVERY creditable scientific

organization has

> disproved

> > this. Please join me in demanding that ABC NOT air the show and in

boycotting the

> episode if

> > they do.

> > Thanks,

> > Ron

> >

>

January 31, 2008

I will keep the companion rest rooms in mind in my role on the board of the Arc

of Ill. Ron.

I would like to know how many of our members feel this is an important issue to

them, and if so, do you have any specific stories you could share with us (or

with me offline at egskb@...)

It would be easier to bring this up if I had a number of requests and a few good

stories.