Why Carl needs his pillow.

• Author: Culver, Irene
• Position: Child with cerebral palsy and sleep apnea - Column

The brown-eyed, auburn-haired little boy sitting next to me in a car seat as I drive to preschool asks, "Did you know my mom and dad made me?" Guardedly, I agree they did. "Shoulda used Play-Doh," he quips. His disability isn't on his mind. He's not suggesting they could have made an improved version of Carl. He's just seen a connection between making something with clay and making a baby.

For long periods each day my grandson Carl doesn't think about his disability, but if it's brought to mind by a classmate or stranger he'll sometimes hang his head and plead, "I want to go home now."

Home is a safe place, but preschool is where he encounters the world - a world he must live in or be forever isolated. In that world, he's different. Being different often means being wrong. "What's wrong with him?" children and adults ask.

In Carl's preschool world, all the other children walk. He crawls. He can crawl around physical barriers, but the social ones sometimes block his progress.

Carl was born six weeks early. He couldn't breathe. For long, frightening moments we watched through a window as he struggled for air, his chest caving in all the way to his backbone. Finally oxygen was given, but too late. He had Hyaline Membrane disease, brain damage and sleep apnea. For three weeks he hovered at the edge of death in the neonatal unit of a northern California hospital, then for six months wore a heart-lung monitor. The alarm sounded many times, but he survived.

For over a year, there was no diagnosis. Floppy and lethargic, he needed twenty hours of sleep a day and cried when he didn't get it. He captivated us with his tiny curled fists and toes - signals, though we didn't know it then, of cerebral palsy. Only later were there clearer signs: his trunk was weak, his legs and arms high-toned. Then we were told: Carl has cerebral palsy.

Cerebral palsy is a catch-all term for brain damage that manifests itself in various mobility and cognition problems. Carl has spastic diplegia (stiff legs), a weak trunk, and intermittently affected arms and eyes. Intellectually he is not affected.

The Americans with Disability Act (ADA) mandates that disabled children be placed in schools with "the least restrictive environment" they can manage. For Carl, that meant mainstream. But finding a school that would take him wasn't easy. The first school we applied to flat-out refused to make ADA-mandated changes to the playground. Carl could not negotiate the deep sand with...