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Long IslandColumnistsJoye Brown

Mom, Dad and autistic twin sons run marathon together

At the home of Robyn and Allan Schneider

At the home of Robyn and Allan Schneider in Great Neck, which houses several running trophies won by their autistic sons, Jamie and Alex. (October 21, 2010) Credit: Uli Seit

It's race day. But for the Schneider family, almost every day is some version of a race day.

When mom, Robyn, walks into her son Alex's room, he reaches out to touch her arm, his eyes clamped shut. He knows, by touch, whether she's wearing running gear.

And if she is, Alex, 20, opens his eyes, ready to get moving. And it doesn't take long before his identical twin brother, Jamie, is ready to get moving, too.

But being ready is not enough. It's never enough.

Alex and Jamie have autism. They are nonverbal, but they communicate with sounds that family members recognize as "Thank you" or other simple expressions that make their wishes known.

The twins cannot shower or dress without assistance. They do not have words enough to tell their mother or father, Allan, whether a calf hurts or a blister has risen. And so race day - and the three other days of the week when the twins do training runs - starts early. Sometimes as early as 3 or 4 a.m., as it did a few weeks ago when Jamie and Alex, who live with their parents in Great Neck, readied to run their first marathon, the Hamptons Marathon.

They got up. Got dressed. Had their feet checked. Got breakfast. Got into the car. And even then, got to the race site early, two hours before start time. "There is no rushing," Robyn Schneider said. "There can be no rushing."

Alex ran the marathon with his coach, Kevin McDermott; Jamie ran with his dad. Alex placed third in his age group, finishing in 3:27; Jamie finished in 6:13.

The twins have been running for years, and it has brought the Schneider family enough trophies to blanket the top of their piano.

Allan Schneider, 57, has multiple sclerosis, and started running for the first time three years ago so that he could run with his son. "Like Alex, Jamie had a coach but he was acting out," said the father. "One day, when he got to the finish line, his knees were bloody from falling to the ground and having tantrums. I knew then that I would run with him."

And so he did, providing a presence that helps keep his son calm and focused.

"I know Jamie and Alex love it," he said. "But I also think I'm in much better shape than I would be if I weren't running, even though, believe me, sometimes I'm hurting."

"Running allows us to be close," he said. "I can't talk to Jamie about baseball, about basketball. When we run, though, it's like we are having a conversation."

In 2008, Robyn Schneider, 54, was diagnosed with breast cancer; when she was in treatment, even through chemotherapy, she started running, too. "It was a blessing for me to get out there," she said. "I think it's been a good thing for all of us."

Alex "One Speed" Schneider is the speedy one. He can do a 6-minute mile. And he will keep running - since he does not know how long any race is - until his coach tells him it's time to stop.

Jamie can run an 8-minute mile; but he's slowed down to match his dad's 10- to 12-minute miles. Robyn runs 10.5-minute miles.

"When Alex and Jamie were young, there weren't a lot of programs and there wasn't a lot of information out there about autism," said Robyn, who with other parents went on to found the Genesis school in Plainview for autistic children.

During the week, several people work with Alex and Jamie at the couple's home, doing everything from helping with everyday tasks to simply keeping them focused. On weekends, the Schneiders are with Alex and Jamie alone.

Which is hard work, but also one reason race days are so special. This morning, the twins and their parents were slated to be up early.

It's race day. And this time, it's a route the family knows well: The Blazing Trails 4 Autism 4-mile run in Great Neck.

The Schneiders will be there.

Ready to run.


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