Living with Autism: "Losing My Little Boy"
A Fierce Determination
With that adjusted perspective, Nicole began her search for information
anew, seeking out websites that used words like "hope" and
"recovery." Choosing not to be limited by Nevada's offerings, the
couple hired private speech and occupational therapists. "Two months before
Ryan started losing words, we moved into our 'dream house' and cut down on
spending," says Nicole. "We had no budget for two therapists to come
once a week at $135 each, but there was no time to spare."
Nicole was also determined to get a diagnosis and more state-funded
therapies for Ryan. She contacted autism-advocacy groups and learned that
having Ryan evaluated and diagnosed by a doctor who specializes in detecting
and treating developmental and behavioral difficulties (what's known as a
developmental pediatrician) would officially qualify him for state-funded
services. During a planning meeting she had with her team of NEIS specialists,
she insisted on getting an appointment with the organization's developmental
pediatrician. Her demand was met, and she had an appointment scheduled for two
weeks later. Still, she was afraid of getting the runaround and once again
walking out the door without a diagnosis.
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