Upwardly Mobile

Being a Resource

Every year, Mobility Management prints a consumer edition that we distribute at the two largest Abilities Expo consumer shows in Edison, N.J., and Southern California.

I was in our booth on Saturday afternoon when a young mother came by with a stroller. She smiled shyly as I offered a magazine. The little boy in the stroller held a strawberry-vanilla ice cream cone. He turned it slowly, looked for drips, and licked them expertly away. His face and his shirt were completely clean. I had never seen a young child eat an ice cream cone so neatly, I told his mother.

"He's that way," she said. Paging through the magazine, she added apologetically, "We're new to this, you know."

"New to what?" I asked.

She waved vaguely at the show hall. "This disability stuff. He was diagnosed not too long ago."

"You have a child in a wheelchair?"

"Yes," she said. She pointed to the boy. "He's almost 3. Spinal muscular atrophy, but he doesn't have his braces on today."

The boy gazed at me with big brown eyes, then decided I was less interesting than his ice cream cone.

"We want to get him into a wheelchair," his mother said. "Well, we wanted to. But the doctor — he wouldn't write a prescription. And my dealer says without the prescription, the insurance company won't pay for it."

I asked why the doctor wouldn't write a prescription.

"He says there's no use. And that he's too little for a wheelchair, anyway." She retrieved a tissue from her purse. The child gave me a good-natured smile as he was unnecessarily tidied up.

"What would you do?" the woman asked. "If you were me, what would you do?"

"I would get another doctor," I said.

For the first time, she flashed a real smile: "That's what our dealer said!"

"Maybe you'd like me to send you research about power mobility for children?" I asked. "You could share it with your doctor, or with another doctor if you get a second opinion. I don't know your son's medical needs, but some very young children benefit from mobility devices."

She put the tissue away. "He's really smart," she offered hopefully, smoothing her son's hair. "Say hi, honey."

"Hi," the boy said.

She told me the name of her rehab technology supplier. "I've visited them," I said. "They do great work."

"They've helped a lot," she agreed. "But it's so overwhelming — we just don't know what to do."

I handed her a business card. "E-mail me, and I'll send you research on mobility for children," I said.

"That would be great," she said. "Say good-bye, honey."

"Bye-bye," the boy said.

This issue, we talk about pediatric conditions affecting mobility — some of them more common, some rarer. We hope this primer will be a resource, a "shortcut" checklist of conditions, symptoms, prognoses and what sort of mobility equipment can help.

Anxious parents depend on you to educate and help them, their physicians and funding sources. You have the best opportunity to reach them.

Because so far, this young mother has not e-mailed or called me.

This article originally appeared in the August 2006 issue of Mobility Management.

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