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Health & Fitness

Proactive Parents

Frustrated by a lack of coordinated treatment services and job opportunities for their autistic children, these parents took matters into their own hands.
By James Williford |
photography by Nick Prendergast

A Mother’s Determination
Sonia Kirkpatrick founded PediaPlex, a collaborative autism treatment center, in response to inefficiencies she encountered seeking care for her daughter.

Sonia Kirkpatrick knew early on that something was wrong with her daughter. Megan had difficulty sucking on a bottle and didn’t walk until she was 19 months old. When she did finally get up on her feet, she fell down more often than other children her age. At 5, Megan still lacked the manual dexterity to operate a pair of scissors, and even the simplest playtime activities, like skipping and pedaling a bicycle, seemed beyond her.

Kirkpatrick took her daughter to the family’s pediatrician again and again, hoping for some insight. “The concern,” she says, “was minor.” And it remained minor until one day, during one of her many visits to the doctor’s office, Megan stepped on a needle, sat down, and calmly said, “Mommy, I can’t walk with this in my foot.”

Alarmed at the little girl’s lack of sensation, the doctor referred her to a neuropsychologist for testing. The result was a exhaustive assessment written in language so dense that Kirkpatrick had to make another appointment just to have its contents explained to her. Megan, she was told, had a combination of Asperger’s syndrome (an autism spectrum disorder), attention deficit hyperactivity disorder, and a developmental neurological condition called dyspraxia, which impacts physical coordination.

Recalling the moment, Kirkpatrick’s usually bright disposition falls away and she becomes visibly tense. “I remember sitting in a very stark, very cold environment, getting a diagnosis across a 6-foot table with no help. I was just devastated. It was like getting a death sentence.”

And that was just the beginning. Megan was taken from pediatrician to occupational therapist, from occupational therapist to speech therapist, from speech therapist to vision specialist, and so on. “Every time I took her to a new place, I’d have to copy a stack of papers and send them over. And then I’d get there for the appointment and ask if they had any questions, and they’d say, ‘Oh, I’m sorry, I haven’t had time to go through her file.’

“I lost eight years of my daughter’s life,” she adds, “eight really valuable years, because no one talked to each other.”

For Kirkpatrick, the experience of those lost years—the time spent worrying, feeling lonely and frustrated, shuttling Megan back and forth between various doctors and therapists—has stayed with her. “I often think,” she says, “that if I could have gotten help earlier, Megan would be an even more remarkable kid today.”

A Coordinated Approach
That lingering tinge of regret, of what might have been, helped convince Kirkpatrick to do whatever she could to keep other families from having to go down the same drawn-out, painful path that she did. A corporate finance executive, Kirkpatrick spent a good deal of her MBA studies at the University of Dallas writing and revising an ambitious business plan that eventually led to what’s now known as PediaPlex. The idea wasn’t just to localize therapists and medical records—although that alone struck her as an enormous improvement over the status quo—but to build a supportive community for children on the autism spectrum and their families. “I took everything that I didn’t have,” she says, “and I put it in there.”

According to the Autism Society of Bethesda, Md., about 1 percent of U.S. children aged 3-17 have an autism spectrum disorder. The cost of lifetime care, the agency says, can be reduced by as much as two-thirds with early diagnosis and intervention.

photography by Nick Prendergast

The PediaPlex model seemed so obvious to Kirkpatrick, she had a hard time believing she was the first person to think of it. “I even hired an attorney,” she says, “because I thought that there must be some reason—some legal reason—that no one else was doing this.” There wasn’t, it turned out, and so she pushed forward, raising venture capital, securing a loan, leasing the space, and developing her team. Having already sorted out the most pressing business details of the new clinic in her MBA thesis—everything from an accounting system to travel policy—things moved quickly, coming together in the space of a few months at the end of last year. PediaPlex officially opened its doors in Southlake in January 2012.

Since then, says Nicole Dunagan, PediaPlex’s director of therapy services, the clinic has evolved at a more measured pace, gradually taking on new patients (there are now about 50) and adjusting its approach to their care. “It’s a completely open environment, and that allows us to customize the intervention. For example, we can provide speech therapy and occupational therapy at the same time, instead of sequentially, which is the way most clinics provide those services.”

It’s a subtle sort of adjustment, but for autistic children, who are often hypersensitive to their surroundings, subtleties can make all the difference. Take Jana Nix’s 5-year-old son, Trace, for example. A severely impacted child, Trace had been seeing therapists and doctors “from one end of town to the other,” as his mother puts it, before the family switched to PediaPlex.

Not only has the simple convenience of the all-in-one clinic reduced the family’s stress load, says Nix, but, already, Trace’s communication and decision-making skills have improved—progress that she attributes to the tailored attention that the PediaPlex team brings to Trace and other patients. “They’re really trying to get down on his level and understand what makes him tick,” Nix says. “They’re interested in my child personally—he’s not just a number.”

Focus On Personalization
That personal touch extends beyond the therapy team. If, for example, a mother walks in at the end of her rope, crying for help—as, according to the staff, they sometimes have—Kirkpatrick expects all hands on deck. “I don’t care if you’re doing accounting or filing insurance claims—you’d better be able to go help that family, because I remember that feeling,” she says. “It’s the loneliest feeling in the world.”

Despite its office location, PediaPlex has a home-like feel. The counseling room has large, soft chairs arranged around a fireplace; the playroom has a slide, swing, a bean-filled sandbox, and jungle gym equipment. The therapy rooms are kid-scale and include large windows so parents can watch and learn from their child’s therapy sessions. And then there are the murals. They’re everywhere—butterflies, a train disappearing in the distance, ants stealing food from a picnic—each designed to communicate in pictures a story of hope and achievement.

The space, formerly occupied by a mobile software development company, wasn’t always so inviting. When Kirkpatrick first laid eyes on it, it was a mess. “Atrocious,” she says. “The walls were bright orange and green, the carpet was disgusting.” But she could see past all of that to its potential, imagining the conference rooms filled with families coming together, therapists sharing treatment strategies in the lunchroom, kids playing in the gym. “I had a vision,” she says, “in my head and in my heart, of the way that this needed to be done.”

Going forward, Kirkpatrick, who’s also continuing with her post as a global controller for Nokia Siemens Networks, says PediaPlex will continue to focus on treatment plans that emphasize personalization.

“Every autistic kid is different,” she says. “They all have different traits. There isn’t one fix for every child.” Kirkpatrick is determined to provide families with the kind of coordinated care that wasn’t available to Megan: “I look at my daughter every day, and at the kids who come in here, and I think, ‘By golly, this has to work.’ ”

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