Raising money—and awareness
Dad’s long, lonely ride will mimic his life as father to an autistic daughter
Monday, March 21, 2005
A long about Arizona or New Mexico, Jeff Spaetzel figures things will get a little lonely. There he’ll be with his friend Adam Dabrowski, just two guys on bicycles in the middle of the desert, pedaling their sweaty way home to Chicago from Newport Beach, Calif. Nearly all of the 2,400-mile journey will still lay ahead of them. Hours will pass without a word.
For Spaetzel, though, that’s just the point. The monthlong bike ride he’s spent nearly two years organizing is ostensibly a fundraiser for the fight against autism—the goal is $100,000—but it’s also meant to mimic, in miniature, Spaetzel’s eight-year experience as the father of an autistic daughter.
“The whole thing is symbolic,” Spaetzel says. “The distance from California to Chicago represents the mileage that families with autistic kids have to travel for specialists and doctor appointments. The fact that it’s only two riders is supposed to convey the isolation and lack of support that families feel.”
Spaetzel and his wife knew something was wrong long before Amber was diagnosed with autism at 3½. She wasn’t talking, and she wasn’t playing with other kids. Sometimes a change from one activity to another would bring on shrieking outbursts.
“When she was first diagnosed, I had a lot of faith in science,” Spaetzel says. “It was like, ‘Let’s get her on some meds and cure her,’ ” he remembers. “But there were not too many places to turn to for answers, and the first thing that starts hitting you is you want to help your child, so you go see lots of specialists. And they all have different opinions, but not a lot of them are on insurance plans. So we spent lots of money on diagnoses, speech therapy, neurologists.”
At 5, Amber was taking 13 pills a day. These days, she’s finding more help in specialized therapy than in drugs.
“It’s trial and error,” Spaetzel says. “It can be hell.”
The bike ride has been Spaetzel’s therapy, and since 2003, the computer professional has spent dozens of hours every week laying plans. On April 17, he and Dabrowski—a gym pal who volunteered to come along—will set out from California, and on May 22, they’ll pedal into the Cure Autism Now Walk at Soldier Field. Their route will take them along the southern edge of the country, logging 55 to 130 miles per day, and they’ll make their way north through Kansas, Missouri and Iowa. Each night, Spaetzel and Dabrowski will stay for free with church groups, fire departments, police departments or the families of autistic children. So far, Spaetzel has raised $15,000—every penny of it headed for the search for a cure—and coaxed a pair of donated bikes out of Trek. Dozens of people, with and without autistic loved ones, have sent letters of support.
“Autism is one of the fastest-growing disabilities in the country,” Spaetzel says. “If you’re not in a major metropolitan city with lots of doctors when you’re dealing with this, it’s hard. I want to just raise awareness.” Lydialyle Gibson