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Double Time

July 20, 2010

AUTISM | A day in the life of the Schwenker twins, their working mom and dad, and Barkley the dog

©2010 Robin Nelson All Rights Reserved


MARIETTA, Ga.—It’s 6:32 a.m. on a school day in the Schwenker home. Jennifer Schwenker is doing her best to get 7-year-old twin sons Sam and Ben dressed, fed—and diapered—before they head to Garrison Mill Elementary School in Marietta, Ga., a suburb of Atlanta.
Sam happily chirps—but not in words. Ben flits about the kitchen, flapping his hands while singing “Ooaahh” in an uninhibited, angelic voice. Both boys were diagnosed with autism when they were 18 months old, leaving Jennifer and husband Michael bewildered. They’ve read mountains of books and handouts to learn about autism, but daily life is never what they expect.
“Raising autistic children is like finding yourself unexpectedly living in a foreign land,” says Jennifer. “They’re locked deep inside their own world. We can’t understand them, even if part of their brain understands us.”

A large board in their living room displays dozens of simple pictures and corresponding words. “It’s a PECS board, a picture exchange communication system,” Jennifer explains. Since neither boy speaks more than a few words, Jennifer and Michael use the simple pictures to help their sons express their wants and needs.
When the boys were 1 year old, a nursery worker in their Douglasville church noticed that they seemed to look through her and acted deaf. Jennifer and Michael kept watching for the milestones of child development, but they didn’t come. They enrolled the boys in a local program for developmentally delayed children and sought help from a speech therapist. Progress was elusive. An Atlanta neurologist confirmed Jennifer’s fears: “They both have autism,” she remembers tearfully telling the speech therapist. “I had no idea what it would all mean.”

“We went into survival mode,” recalls Michael, a Delta mechanic whose job at the time was threatened by the airline’s impending bankruptcy. “I didn’t know if I was going to have a job from one day to the next. We were covered up in medical bills. We sold our home in Douglasville and moved to a smaller house in Marietta. We sold our van and bought an older one. We pared expenses to the bone. We had to limit therapy for the boys because the insurance folks decided in the middle of this that they wouldn’t cover bills that had to do with autism.”

The couple sank deep in debt to a local therapy center. Still, they kept their focus on their faith and not their circumstances. They joined a local church where a special needs ministry recently had been organized. Volunteers watched both boys on Sunday mornings so the Schwenkers could worship without distraction. Eventually, the clinic where the boys’ therapy bills had surpassed $50,000 graciously forgave the debt and allowed the boys to continue to receive therapy at no charge. When they were old enough to attend a special needs kindergarten, Jennifer decided she would seek a job as a special education teacher at the same school, but in a different classroom.
The Schwenkers’ marriage thrives, they say, even in the face of statistics that cite an 80 percent divorce rate among parents of autistic children. “It’s a lot of hard work, feeding them, changing their diapers, trying to keep them safe, entertained, and happy. But I didn’t want to institutionalize them in my own home.”

To help the twins have a boy’s life, the Schwenkers recently acquired Barkley—an 18-month-old Labrador Retriever and bloodhound mix trained to protect and track autistic children. Barkley keeps watch over the boys, especially Ben, who loves to climb fences and can find his way past locked doors.
An Ohio-based nonprofit that provides assistance dogs to children with disabilities, 4Paws for Ability, trained Barkley. Co-workers at Delta and church friends helped pay for Barkley’s training. “Barkley knows his job, and if either of the boys escapes, Barkley can track them,” says Jennifer.
Autistic children rarely understand danger, notes Karen Shirk, executive director of 4Paws. An approaching car, a stranger, an aggressive dog separated from the child by nothing more than a gate easily opened—these don’t trigger normal cautions for them. “Many parents report that their greatest fears center around their child being missing or when out with their child, that they might look away only for a minute and turn to find their child gone.”

With Barkley the Schwenkers go to the park, the store, and for walks in the woods. Barkley even accompanies the boys to church. “You realize you’re never going to experience the things other parents enjoy. . . like soccer games, Little League, school plays, dances, college, all of it. I don’t dwell on it. We try to focus on the things our boys can do,” said Michael.

But Barkley can’t take away fears for the future. Those often come in the evening, in the quiet of the kitchen, where Jennifer pauses to wipe a tear and wonders, “What will happen to them once Michael and I are gone? Where are they going to live, and who will take care of them?”

As the boys grow up, it’s hard to imagine whether they will live with their parents, in an assisted living home, or elsewhere. Jennifer says, “I’m scared for them,” and Michael adds, “I don’t think I have what it takes, but I guess God thinks I do.”

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