"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
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
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.