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Sunday, April 15, 2012 - Page updated at 09:30 p.m.
Seahawks GM John Schneider knows: Autism is a family diagnosis
By Steve Kelley
Seattle Times staff columnist
RENTON — Ten-year-old Ben Schneider is a fun kid. He has a great laugh, loves Legos and playing video games. You can hear the pride in his parents' voices when they tell you how smart he is.
When Ben was 16 months old, he could arrange the letters of the alphabet in order. When his parents read him books, he would memorize the stories. Before he could read, he could recite the words to many of the stories verbatim, even knew when to turn the pages.
But when Ben was about a year-and-a-half old, Traci and John Schneider noticed something wasn't right. He would throw two-hour tantrums.
There was the time in a bookstore, when a model train ran off the tracks and Ben got irrationally angry, screaming and pulling books off the shelves on the way out of the store.
The Schneiders are loving parents and Traci was stunned and hurt when the family's primary-care physician suggested she take parenting classes. Traci was a first-time mom and the implication was that she wasn't doing a very good job.
"He made it seem like I was crazy," said Traci, the wife of Seahawks general manager John Schneider. "He acted like I didn't know what I was talking about."
At the time, John was the Green Bay Packers' director of football operations. He suggested Traci talk with the team's psychologist.
"She validated all our concerns," Traci said. "And she started us down the path toward a diagnosis. It was a long road, but we got there."
Ben was diagnosed with autism, a disease that affects the brain's normal development of social and communication skills.
"Once you get the diagnosis, it really kind of rocks your world," John said. "I didn't know much about the disease. I thought it was like 'Rain Man.' But we had to kind of gather ourselves and figure out how to fix it."
Next Thursday, at El Gaucho Bellevue, the Schneiders will be hosting "Prime Time," a celebrity waiter event that will raise seed money to launch Ben's Fund, which in partnership with Families for Effective Autism Treatment (FEAT) of Washington will provide grants to families to help them cover the cost of medical bills and therapies.
After Ben was diagnosed, he had 35 hours a week of in-house therapy for 3 ½ years. A team of five people worked with him on speech therapy, biomedical treatments and other therapies. After that he did more than two years of scaled-down therapy, 12 to 15 hours a week.
"He's been a busy kid," Traci said.
Autism can destroy families. Traci said that when Ben was diagnosed, the divorce rate for families with an autistic child was 85 percent.
Treatment is expensive. It can cost a family as much as $2 million to $3 million to care for an autistic child over the course of his or her life. The stress can be overwhelming. Parents can blame each other. There can be a sense that there is no way out.
"It's a whole family diagnosis," Traci said. "It affects everything. Ben would have two-hour temper tantrums and we never knew when it was going to start, why it was going to start, or where we would be when it started. There were a lot of periods where we didn't go anywhere. We didn't do anything. And when we did go somewhere, we had to be ready for the worst case."
The Schneiders, who also have a younger son, Jack, were fortunate. They got Ben the right kind of help. They are seeing the positive effects from his therapy. Their 16-year marriage has beaten the odds.
"We never knew if Ben would ever tell us that he loved us back," John said. "It's a strange feeling when you say, 'good night' to your son and he doesn't say 'good night' back. But we were blessed to be in a position where we could get the right help. Other families don't have access to the same resources."
Ben is doing very well. I met him last week at the Seahawks' headquarters. He looked me in the eye and smiled, and said hello.
"The worst-case scenario, he lives with us for the rest of our lives," Traci said. "The best case, he is able to live on his own, maybe go to college, have friends, get a job and be able to navigate the world."
I asked the Schneiders if there was anything they wanted to emphasize about the disease.
"Autism is an extremely fast-growing epidemic, and we have to help the parents so they can help their kids," John said. "There's a ton of hope out there. It's not all gloom and doom."
Ten-year-old Ben Schneider is proof of that hope.
Steve Kelley: 206-464-2176 or firstname.lastname@example.org
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