Welcome to this edition of the Down Syndrome Support Newsletter!

As summer winds down and the kids are back to school, the Southwest Suburban Support Group is ready to start up again. Everyone is invited to attend the meeting on September 20. I want to say congratulations to a few new families that I have spoke with over the summer. Hope you are enjoying your new little ones and we look forward to seeing you at the meeting.

Don't forget to sign up for the Buddy Walk. The early registration deadline is September 15. You can still register the day of the race, but early registration guarantees a T-shirt will be available for you.

See you soon,
Jennifer
aka 'Brandon's Mom'

If you have a story, event or happening, email it to info@dssupport.net and we can include it in the next edition

Calendar

Southwest Suburban Support Group Meeting
September 20, 2003
at the Sharon Methodist Church, Plainfield
10:00 am – 12 noon
Come on out and meet all our new members.

1st Annual DS Support Buddy Walk
October 11, 2003
Central Park in Oak Brook
Check out www.dssupport.net/buddywalk/ for registration and pledge forms.
Come on out for a great day of fun, there will be entertainment, food, and great prizes!! Check the web site for all the details.

Western Support Group
Beginning of the Year Planning Meeting
Tues., Sept.16 at 7:00 pm at Good Samaritan Professional Building, 1020 Ogden Ave. in Naperville.
RSVP to Bonnie Taylor at (630) 579-8682.

Discipline with Dignity
sponsored by ARC of Illinois
Tuesday September 23, 2003
Hilton Hotel, Lisle, IL; all day conference
ARC Family members $45; non-members $50
For more information 708-206-1930

Pumper Pull
to benefit the Law Enforcement Torch Run for Special Olympics, Illinois.
Sept 27

Registration will begin at 9 am at the corner of Liberty Street and Main Street, and the event kicks off at 10 am, Sept 27. Teams are encouraged to pre-register as the event will be limited to the first 20 teams. Registration forms can be picked up at the Morris Police Department, Morris City Hall, Big R, Save A Lot, UTI Systems, Tire Tracks, the Powerhouse Gym and the Grundy County Corn Festival Office. The entry fee for the event is $250 per team, and all participants will receive a T-shirt.

The format for the Pumper Pull will be similar to a tug-o-war. Teams of 10 participants will pull a 35,000-pound fire engine a distance of 25 feet in the shortest time. Cash prizes will be awarded for first and second place. Trophies will be awarded for first, second and third. Also, a traveling trophy will be awarded to the winning team. For further information, contact Deputy Chief Tracey Steffes or Detective Eric Werden at (815) 942-2131.

SCHOOL DISCIPLINE: IDEA & Illinois Rules
This is a free workshop.
Date: Saturday, October 4, 2003 from 8:30 am to 3:30 pm
Location: Egan Urban Center, DePaul University,
243 S. Wabash Ave. Chicago.
Presenters: MATT COHEN, Nationally known Special Education Attorney and
Training Specialist & Consultant, JIM McGOVERN.
Answers to the following questions and many others will be given:
• What safeguards do parents have under Special Education Rules when there
are discipline problems?
• What do the rules say about suspensions?
• What protections do students with disabilities have against expulsion?
For more information contact the Family Resource Center in Chicago at: 312-939-3513.

ACCESSING THE GENERAL EDUCATION CURRICULUM & ACCOMMODATIONS & MODIFICATIONS
Date: Friday, October 17, 2003 from 8:30 am to 3:00 pm
Location: Peoria, Illinois.
Presenter: DR. RICHARD VILLA, Bayridge Consortium, Inc. San Marcos, CA.
Registration Fee: $40.
Sponsored by The Heart of Illinois Down Syndrome Association, Inc. Peoria, IL.
For more information call Teri Ehrenhardt at 309-467-6113 or e-mail her at: ehrenhar@mtco.com

Member Events

Has your little one made a great accomplishment? or do you just want to let everyone know of an event that has happen to you? If so, let us know. Email your event to info@dssupport.net for inclusion in the next newsletter.

Elizabeth, Colleen, Brandon, and Jennifer

Summer Picnic

On Aug 16, the Southwest Suburban Support Group had a picnic at the Village Green Park in Plainfield. Pictured above is Elizabeth, Colleen, Brandon, and Jennifer. Though the weather was hot, there was fun had by all.

Real Generosity toward

the future consists in giving

all to what is present

--Albert Camus

All of these calendar items and more can be found at www.dssupport.net/local_happenings.html

Know of an event or other news? Email info@dssupport.net for inclusion in the next newsletter.

"Art imitates Life," or is it "Life imitates Art?"
A Father's Triumph Over Down Syndrome
By Rusty Fischer, Author of FROM CP TO CPA: One Man's Triumph Over Disability (Disability Books, 2003)

Regardless of which one is correct -- both are realized the moment actor Cullen Douglas (Sunshine State, Love Liza) steps onstage to perform his one-man show "Afraid to Look Down."

Douglas' solo play explores the journey he took in becoming a first-time father to his oldest son -- born with Down syndrome. "The bottom dropped out the day Gabriel was born. I was awash with every imaginable emotion; from despair and abandonment to guilt. I had no idea how to be a father to a child with a disability -- I felt completely overwhelmed. Rachel (wife) and I had made so many pictures in our minds of what life was going to be like, but it seemed like they might not ever see the light of day."

"I wrote the play for a handful of reasons," comments Douglas. "I started writing to try and sort out my feelings, but the play that began to emerge was just awful, a lot of - woe is me, I hate my life, your life is so much easier than mine… Thankfully I came to my senses and realized that no one would sit through such drivel. So I walked away from the piece. When I returned, I was resolved to write only the truth - to be unflinchingly honest, to expose myself, warts and all and most importantly to keep my sense of humor. Despite the fact that I had spent 9 months bursting with fears and anxieties about becoming a father, I had felt prepared. I had read all the books, didn't miss a single Lamaze class, I was even trying to practice my Kegal Exercises."

Keeping a sense of humor had become rule no.#1 between Cullen and his wife -- Rule no.# 2, incidentally, is "Don't forget rule no.# 1."

"I tried to be very careful as the play began to take shape through it's various workshops and staged readings not to allow it to become some sort of sugary triumph of the human spirit narrative  -- it's simply the story of how I learned to get out of my own way to let Gabriel teach me how to be a father.My goal was to obviously write a play that would be entertaining."

Douglas certainly accomplishes in doing just that  -- given the number of times he's forced to pause during the performance while the audience catches their breath. "But I also wanted to create something that perhaps not only entertained but caused people to reflect."
"The media -- theatre, film and television -- so strongly influence how we think and behave that I felt compelled to throw in my two cents as a father. My job as a parent is to help maximize both of my son's potential and perhaps clear the way for greater understanding and acceptance of Gabriel's disability.  Down syndrome is a part of who he is, but it certainly isn't the only thing. He's a person first and foremost. If I can do my job as an actor while combining it with my job as a father than I'd like to think I'm succeeding at both."

What lies ahead for the play is in the hand of future audiences. Up to this point the show has always been self-produced. Meaning Douglas puts up his own money to cover all of the expenses in mounting the show. "It's about maxing out the credit cards. Sometimes it feels like the work I do on film and television is only there to support my habit - my play. Though I'm very interested in finding the right producers to take the show out of the sort of grass roots arena that it currently exists in and present it on a much larger scale."

People have begun to come out of the woodwork to offer Douglas their support. The website -- www.afraidtolookdown.com -- all the production stills used for advertising and the demo video - produced to help secure future bookings, were all donated. "I would love to find myself in a long run of the show somewhere and eventually film it. I'll keep doing the play as long as people continue to buy me as a wide-eyed guy in his early thirties. My days may be numbered though -- recognizing the rate that my hairline keeps receding.  "

ABOUT CULLEN:
Cullen Douglas recently played supporting roles in John Sayles' "Sunshine State," Touchstone Pictures' "Big Trouble" and Sony Pictures Classics' "Love Liza."

This past television season he appeared on NBC's Boomtown and on UPN's Enterprise.
He studied at the American Musical and Dramatic Academy, Florida School of the Arts and completed an acting internship with New Stage Theatre in Jackson, MS. It was there that he not only originated the role of Zephon in "Eden" a World Premier in the Eudora Welty New Play Series, but also met his future wife Rachel.

He's worked as a freelance scriptwriter for the Walt Disney Company and Nickelodeon.
His solo play "Afraid to Look Down" recently had a successful five week run at the National Comedy Theatre in Hollywood CA.
He received the Lillie Stoates Award for Best Supporting Actor in a Play for his work in The Orlando Theatre Project's production of "The Lion in Winter." He also shares a Special Recognition Award with Rachel, from the Down Syndrome Association of Central Florida, for helping create larger awareness.
Cullen lives in Los Angeles with Rachel and their two boys Gabriel and Cameron.
For a more complete resume visit: www.imdb.com