[IEP_guide] National Down Syndrome Congress convention in KC shows how times have changed

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National Down Syndrome Congress convention in KC shows how times have

changed

By MELODEE HALL BLOBAUM

The Kansas City Star

When Robison's daughter, Amy, was born in 1982 with Down

syndrome, positive role models were in short supply.

Professionals suggested that he might not want to take her home. And

the idea that she might graduate from high school or go on to

community college was unthinkable.

" I remember searching wildly for positive images that would tell me

what my future might be, " said Robison, now the president of the

National Down Syndrome Congress board.

Times have changed.

Just ask the 1,700 people from around the world who gathered this

weekend for the 35th annual National Down Syndrome Congress

convention at the Westin Crown Center hotel.

Keynote speaker Gaffney didn't let Down syndrome keep her from

swimming the English Channel as part of a relay team. She now wants

to swim across Lake Tahoe. She was one of several young adults with

Down syndrome sharing the stage with parents and researchers,

offering a vision of possibilities that no one would have imagined a

few decades ago.

Robison, of Boston, said Gaffney and his daughter are part of the

first generation of students who made their way through federally

mandated special-education programs. They're going to college,

finding jobs and buying homes.

" We never had role models in Down syndrome until recently, " Robison

said.

As an example, he points to the number of community colleges who

accept students with Down syndrome. Five years ago, there were eight

such schools around the nation. Now there are 130, he said, and his

daughter is among the community college students.

Ann Turnbull, co-director of the Beach Center on Disability at the

University of Kansas and a keynote speaker who shared the stage with

Gaffney, recalled the prevailing philosophy on Down syndrome when she

was training as a teacher in the 1960s. The focus then was on what

students couldn't do, like read or communicate.

But today's students defy those stereotypes with help from research

identifying ways to individualize instruction, leading to higher

expectations.

Workshops over the course of the three-day convention addressed

education and health issues, as well as some of the family stress

that comes with a child with disabilities.

Greg of Edmond, Okla., attended a session on including special-

education children in general-education classrooms. His daughter

is 6 and enters first grade this year.

" We haven't fought any battles yet, " he said. " But we want to make

sure we know. "

His family is part of a network of Oklahoma families that have

children with Down syndrome.

" There's a group of parents whose kids are just a little older, and

they're role models for us, " he said. " And there are parents who have

kids just a little younger, and I guess we're role models for them. "

This is the first National Down Syndrome Congress convention that

and his wife, Joni, have attended.

" I have new heroes, " she said. " I see the possibilities for my

daughter to go on and do amazing things. "

To reach Melodee Hall Blobaum, call 816-234-7733 or send e-mail to

mblobaum@...