Federal Way student redefines success: Autism prompted desire to offer help for families

2002-03-25
by Mary Swift
Journal Reporter
 

FEDERAL WAY -- She's been photographed with First Lady Laura Bush.

She's rubbed shoulders with Supreme Court Justice Sandra Day O'Connor, not to mention Elizabeth Dole and an assortment of other distinguished women.

She's been honored nationally for leadership and community service.

So what more could 20-year-old Katie Grimes be looking forward to? The answer is plenty if Grimes, a sophomore at Washington State University, has anything to say about it.

Grimes, who graduated with honors from Thomas Jefferson High School in 2000, is working on a double major in biology and German.

She hopes to study abroad.

And she's already thinking about grad school.

Eventually, she says, she wants to work with animals --although not as a veterinarian.

And she'd like to focus on herpetology, the study of amphibians and reptiles.

But right now, Grimes is still basking in the glow after participating in the Girl Scout Gold Award Young Women of Distinction celebration in Washington, D.C., earlier this month.

The Girl Scout Gold Award, the equivalent of the Boy Scout Eagle Award, recognizes community service and leadership.

Roughly 1 percent of all Girl Scouts --approximately 3,000 girls each year --receive the Girl Scout Gold Award. Only 10 of those earn Young Women of Distinction status.

As one of this year's honorees, Grimes was lauded for her role in organizing the Federal Way Autism Support Group for families of autistic children.

Autism is a brain disorder, present at birth, that affects the way the brain uses information. Among other things, speech delays, or failure to develop speech altogether, is a common characteristic. So are difficulty and delays in understanding how people interact, a characteristic that creates significant social challenges.

Grimes' interest was more than accidental.

She herself is autistic.

But, in many ways, she is one of the lucky ones.

Though she experienced the speech delay and social difficulties that are common with autism, she was blessed with a high IQ and is considered ``high functioning.''

As it turns out, both school and the Girl Scouts were big motivators for Grimes.

After finishing first grade in a special education class, Grimes wanted to shift to a regular classroom. School officials wanted her to start in a regular first-grade class. Grimes, figuring she'd already done her time in first grade, wanted to start in second. So a deal was cut: Her reading skills weren't where they needed to be. School officials told her if she learned to read over the summer, she could go to a regular second-grade class.

Grimes and her mother, Lisa Grimes, set to work.

``It was frustrating for both of us,'' Lisa Grimes said. ``She had limited reading skills. So we'd sit down for a couple of hours a day and she'd be in tears and I'd be in tears, too. I'd be saying, `You're the one who wants to go to regular second grade.' She'd get up and walk around mad, and then she'd come back and go back to work. By September, she'd learned enough to start second grade. By Christmas, she was reading her head off. They told me, `It will be fine.'''

And it was -- not that it was always easy sledding.

Grimes spoke differently than other children.

And because she didn't grasp social cues people use when they interact, she acted differently.

``Kids made fun of her,'' Lisa Grimes said. ``She would come home crying. Her younger sister would come home crying because the kids were calling her sister `weird.' There were a lot of tears.''

But then there also was the Girl Scouts.

Grimes joined the Brownies in second grade.

It was a high point in her young -- and difficult -- life.

``To be in Brownies, to have a Brownie uniform, to do what the other girls were doing -- that was important to her,'' Lisa Grimes said.

Still, even the Girl Scouts wasn't always an easy fit.

Not everyone could cope with a girl who sometimes acted differently than the other girls, who sometimes had trouble understanding directions, who sometimes needed to have directions written rather than verbalized, who struggled with personal relationships.

Grimes bounced around among troops over the years.

Eventually, she ended up in a troop her mother was leading for Katie's younger sister.

In her senior year of high school, it was time for her to do her Gold Award project.

Initially, Grimes said, she envisioned creating a support group for other ``high functioning'' autistic young people like herself.

``I felt like when I was a young person, I had a lot of struggles and hardships --autism on top of adolescence,'' she said.

``I felt it would have helped me to have coped with the pain I was experiencing then if I could have met other people like me. I didn't know other autistic young people like me.''

But Grimes soon realized her focus was too narrow. She opened the group to all families of autistic children.

She facilitated monthly meetings, arranged guest speakers, designed and distributed a booklet on autism and created a Web site with information on the support group.

Grimes ran the project during her senior year in high school, then turned it over to another person when she headed off to college. These days, the Federal Way Autism Support Group serves 90 families.

Colleen Ozolitis, director of the young adult program for the Totem Girl Scout Council, nominated Grimes for the national honor.

Grimes' Gold Award project, she said, was ``clearly exceptional.

``To get the Gold Award, you're supposed to identify a need in the community and meet it. It needs to be something you're passionate about,'' Ozolitis said.

``Social interaction can be tough for her because of the nature of her disability. So it really was a self-challenge. She had to tell people about her disability.''

Grimes got word of the award in January. It took a while, she says, for the news to sink in.

But in Washington, D.C., this month, where Grimes attended an award luncheon as well as a black-tie gala celebrating the Girl Scouts' 90th anniversary, there was no ignoring the reality of the honor.

And then, Katie Grimes said, there was that moment that caught her totally by surprise.

She was hanging her coat before the award luncheon when she heard a familiar voice.

It was her mother's.

Unbeknownst to Katie, Lisa Grimes (as well as Katie's grandmother, Ruth Tylezak) had flown back to the ceremony to surprise her.

But then Lisa Grimes wouldn't have wanted to miss it.

``She's been so inspiring all her life because she wouldn't be held back,'' she said.

``She has so much desire, so much determination to be no less than she can be. As a parent, you can't give up on a child who wants that so badly. You can't do anything but be there for them.''