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Living with Autism: "Losing My Little Boy"

A Fierce Determination continued...

Nicole felt her next move would make all the difference: She took Ryan back to their family pediatrician for a diagnosis. The doctor was shocked to see the once-vivacious boy she'd known sitting in the corner, staring at his fingers. She listened as a shaken Nicole rehashed all that had happened with Ryan. The doctor hugged Nicole, and handed her a diagnosis of autism.

That gave Nicole more confidence when meeting with the developmental pediatrician about a week after, in late September. The doctor agreed that Ryan had autism, and in addition to the therapies they were learning from the NEIS coach, the doctor approved a larger range of services, including a speech therapist, occupational therapist, and nutritionist.

Since that diagnosis, the scope of Nicole's daily to-do's has become mind-boggling. The biggest nonnegotiables on her schedule board -- which is prominently posted over her desk -- are practicing the therapies she's learned. About five times a day, Nicole "brushes" Ryan: She strokes his back, hands, arms, legs, and feet with a plastic-bristled brush to help him adjust to sensations, including touch, which can overwhelm him (sensory issues are common among children with autism). For the same reason, she does "heavy work" with Ryan three times a day; she might, for instance, have him pick up a weighted ball. And she gives him deep-pressure joint compression massages (she presses on combinations of joints, such as ankle and knee, to release the calming brain chemical serotonin). Nicole wishes she had more time to explore treatment options. No matter how much she does, Nicole is certain she's not doing enough.

"With everything that's going on with Ryan, I have trouble balancing attention between my kids," says Nicole. "For example, I may walk away from doing homework with my daughters when Ryan needs something. Then I hear, 'Why are you always going to Ryan?' It makes me wonder what else I'm messing up."

Looking at her schedule board, she does point out bright spots: Sunday evenings, after the kids are asleep, she enjoys quiet time with Tim. There's also an upcoming lunch with her girlfriends. And then there are the Monday-morning playdates with a friend from church and her son. "It's been healing when people like Sue show up at my door to offer support," she says. "She and I walk and take the boys to the park. It's the one day I feel like a normal mother again."

Look for the next installment of Living With Autism in the May issue of REDBOOK.


Originally published on January 10, 2008


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