July 7th Very special Elija Workshop

[Guest guest]

*_What Autism Looks Like when it's All Grown Up_*

When my son was first diagnosed at the age of 2, I can tell you I was

devastated, but I was also ignited with a drive to " fix the problem " .

I thought just a summer of speech therapy and this " aba thing " would

catch him up and I could go on with my life, of raising more kids, and

upkeeping my home and bringing my family life back to normal.

I cannot tell you how inconveniencing it was scheduling these therapy

hours (which back then were GIVEN away to people- imagine, only 5 years

ago!I actually turned down the initial 15 hours of services and told

them to only give it to me 6 hours, a week, as to not interfere with our

gymboree and etc)

I was thinking, he is just a baby! He needs to go out and be with his

sister and me at the park, at the beach, strolling along the streets

running errands.

But I was soon convinced through the efforts of the " professionals " who

came through my door, that this was neccasary and needed to be

intense.Wow that sounds heavy..I better look into this Autism thing much

closer.

And there I went to the local library with dual stroller in tow,

maneuvering my way through the narrow aisles (back then I wasnt an avid

Internet surfer, and people were still using libraries as a source of

information

That was the beginning. The wealth of information I got off of those

shelves, was like a drug.

Every day I was there getting a " fix " of another book about Autism and

ABA. And with every page I turned, I grew smarter, yet my world felt

darker and darker.

And as my defense mechanism always kicks in , at the moment of darkness,

I moved in to action.

I wanted to make sure that WHATEVER They were doing to my child was

precisce and right.

I was NOT going to sit back and let him get mediocre therapy. This CAN

be FIXED! He CAN be indisguishable from his peers. He WILL.

Ok, by now I knew I needed a little more than a summer and a couple

hours a week

This kid is gonna need MORE hours and MORE intensity.

Again I went with dual stroller in tow, to the Dept. of Mental Health

office in Queens

I was victorious! 40 hours a week of therapy all home!! WOO HOO, YIPPEE,

HOORAY!

What a bitter sweet triumph! My son is SO eligible he got all those

hours! What kind of triumph is this?

Yes, I was very immature in my way of thinking back then. I took it all

in stride though, as well as any young mother of 25 with two kids could.

I still believe I do-- take it in stride.

However there are some things that I have learned and experienced, that

has help me cope with the fact that

MY SON HAS AUTISM, and IT IS LIFELONG. I have come to understand that

the " core " deficits , in his social, communication and behaviors, will

always be present. It does not mean he will not accomplish great things

or continue to do well ,learn how to be more social or conversational.

It doest mean he is not going to make me proud.

It just means that it is something we will help him cope with, by giving

him the skills and strategies that he needs to be as individual and

independent as possible.

I am ok with this. I really am.

But I have to tell you that one of the monumental things that happened

to help me realize and envision where he will be in the future,or even

get the strength to think that " we will get through this ok " ,

is an annual event, that for ME was life changing.

Here on Long Island we have a great conference hosted by *AHA/AS/PDD

(*http://www.aha-as-pdd.org/)

which is for both Individuals on the Spectrum as well as parents ,

professionals and caregivers.

One of my favorite parts, is the Young Adult Panel.

Where you meet and hear the stories of these individuals who are

traveling a road which our children are soon to reach.

I cannot not tell you how inspiring it is to spend a day with these

individuals. Seeing their uniqueness, and seeing what " Autism " looks

like when it is all grown up.

We figured , as much as we think our friends at *AHA/AS/PDD,* are

gracious and accommodating as conference hosts, we here at the ELIJA

Foundation, wanted to magnify this part of their conference,

and invite a very special presenter as well as a Young Adult panel to

come and speak for our ELIJA members.

Here are the detail below

We really encourage you to come, it may be enlightening for you as well

.... to see What Autism looks like when it is all grown up

**July 7, 2005

$50 members/ $75 non members/$100 Late (After June 23 2005) - Walk in

fee after

CW POST University, Brookville NY Humanities Building

<http://www.liu.edu/but01/location/cw.html>

9-4

" The Personal "

Presentation by Carley - GRASP'S Executive Director

describes his experiences growing up AS- " back when no one knew it,of

course "

High Functioning Autism and Asperger Syndrome Young Adult Panel : They

will discuss the ups and downs that led them to where they are today. A

question answer period is included.

Bio: Diagnosed with Asperger Syndrome in November of 2000,

Carley received his B.A. from Hampshire College in 1986 and his M.F.A.

from Columbia University in 1989.As the Executive Director of GRASP, the

largest organization comprised of adults on the autism spectrum, he has

spoken at a plethora of conferences, hospitals, universities, and health

care organizations. He has appeared in the media widely, most notably in

the NYTimes, Washington Post, NY Newsday, the London Times, the

Chronicle of Philanthropy, on CNBC, and Terry Gross’ Fresh Air on NPR.

His article, GRASP at One Year: A Personal and Very Unprofessional Look

Back is still being widely circulated. Carley is also on the Board of

the brand new Asperger Foundation International. Until 2001, Mr. Carley

was the United Nations Representative of Veterans for Peace, Inc. In

that time, he was known primarily for his work in Bosnia, and in Iraq as

the Project Director of the internationally acclaimed Iraq Water

Project; and under these auspices, he also hosted a monthly radio show,

Progressive Radio Today. Also prior to 2001 he was a playwright who

enjoyed 15 productions and 10 readings of his plays in New York. Today,

in addition to running GRASP, he moonlights as a classical music host

for New York Public Radio (WNYC). Along with his (then) 4-year old son,

he was diagnosed with AS in November of 2000. He is at work on a memoir

entitled, Of Course You Are, about the events surrounding the 4-1/2

months after his diagnosis. He lives with his son and Wife,

Herzog, in Brooklyn.