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"We Need to Pull Ryan into This World"

Still work to be done

Every step forward gives Nicole hope that she’s getting back the son she once knew. Yet Ryan is still far from being developmentally on par with his peers — a contrast that comes into focus during weekly NEIS playgroups. Ryan is the only child with autism in the group; the rest of the kids are “typical.”

At circle time, when all the children take turns announcing their own name, Nicole is the one to say, “Ryan.” And when others follow the movements dictated in a song (such as “clap your hands”), Nicole helps him clap — something he once did on his own. “When you go down a list of all the things that Ryan isn’t doing well, no matter how small the skills seem, it all adds up to autism,” says Nicole. “Though I have hope for Ryan’s future and absolutely love him as he is, I’m still heartbroken over autism.”

Just as Ryan is the “different” child in the playgroup, Nicole feels like an outsider among the moms there. “They’re nice, but they don’t really interact with me,” she says. “I feel like they see me as ‘the lady who has the kid with autism.’” Nevertheless, Nicole knows that exposing Ryan to the structure and social environment of the group will help in his eventual transition to either a mainstream preschool classroom or one that has a mix of typical and developmentally delayed kids. “Ryan would never get better if I put my feelings of hurt before him,” says Nicole. “I have to just stay focused on how far he’s come.”

The Kalkowskis don’t want to let time or money stand in the way of Ryan’s recovery either, so they’ve decided to use an intensive, in-home behavioral therapy called the Lovaas Model of Applied Behavior Analysis (ABA). The therapy works on a variety of skills, from following simple instructions to socializing, and relies heavily on positive reinforcement (praise, for instance, and fun trinkets, such as a spinning top) when a task is completed. Every day, a tutor works with Ryan at home; he has a team of six tutors, including Nicole. Currently, Ryan receives about 30 hours of Lovaas ABA a week; gradually, he’ll work up to 40.

For Nicole, Lovaas is like running an in-home school and business. She has to keep track of the therapists’ notes and data, write their paychecks, and log their hours and checks for tax purposes. Plus, she’s left with lots of filing each day.

The program’s cost — which isn’t covered by the Kalkowskis’ insurance plan — is a big budgetary strain. Their income level is too high for them to qualify for many sources of financial aid; luckily, they received funding that covered the $3,500 mandatory two-day training of all the tutors, including Nicole. Still, the couple pays $2,000 a month in fees, plus the tutors’ salaries, which run from $10 to $15 per hour.

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