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Why Carl needs his pillow.

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 his walker. With his stiff legs, he could not be placed in a baby swing and was too weak to swing in a regular one.

The authorities gave us reasons for not making the playground accessible: If we install a swing for him, they said, we'll soon have 500-pound adults lining up, waiting to use the baby swings; if we make changes, he may not like them by the time he is eight years old; if we make changes, he may get worse and not be able to use them. So instead of making any changes, they proposed tying Carl to the merry-go-round.

Finally realizing their legal culpability, the school officials grudgingly agreed to some small improvements. But fearing retribution against Carl, my daughter abandoned her attempt to enroll him.

The second school we applied to had fewer barriers. The playground was hard, packed dirt, more accessible than sand to a child who sometimes uses a walker and sometimes crawls. There were home-made things like a mound of dirt with a tunnel through it and a large sandbox a child could sit in. The teacher seemed ready to welcome him.

But in spite of our show-and-tell efforts (bringing dolls with disabilities, tiny crutches, wheelchairs, stories about children with disabilities, explanation of Carl's specific disability and how it affects him), Carl is left out of many play activities. Parents plan and carry out those activities. One day, the twenty-four able-bodied children were given tin-can stilts. Carl was given nothing. Of course, children without disabilities must run and play and walk. But activities that include the only child with a disability could also be planned.

We go to school with Carl every day to help him move from one activity to another, to place him in his special cube-chair at the table, and on his block at circle time. When the other children dance, we hold him under his arms and help him dance, too. But all the efforts toward inclusion are our efforts, not the teacher's or the other parents'.

Often the children play that Carl is their baby; other times they ignore him. But once I saw him joyfully wrestling with his favorite friends. Another time he played with a toy service station and cars and trucks, and soon other children joined him. They were all equal: playing on the floor, crawling around pushing little cars. Not walking was irrelevant.

But he gets tired, and sometimes sleeps through most of the preschool day, curled up on a little couch in the dollhouse. Sometimes his feelings are hurt. One day a little boy mocked him, using his walker, grimacing, throwing his body forward awkwardly, calling out, "I'm Carl!"

Educators, other parents, grandparents, therapists, physicians, friends - all advise us to send Carl to a school for disabled children, with children "like himself." But those children are not like him either; most are severely retarded, while he is above age level in all intellectual areas measured. We're told that we ask too much of him. We are asking a lot. It is hard for him. But this is the real world and he will live in the real world all his life.

Carl has become strong since he started preschool. Before, a few minutes using his walker exhausted him. Now he can explore all the aisles of the local toystore. He loves to play with his classmates, even if he has to be the baby. Sometimes during circle-time, he crawls to the teacher and, with our help, stands up to show-and-tell, just like the other children do. One day, standing there with support, he asked the other children, "Do you know where my dreams are?" Receiving no answer, he triumphantly told them, "They're in my pillow!'

His dreams are in his pillow - that's why he carries it wherever he goes. We're doing all we can to make any dream Carl may have come true. The ADA gives us that right.
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Title Annotation:child with cerebral palsy and sleep apnea
Author:Culver, Irene
Publication:The Progressive
Article Type:Column
Date:Sep 1, 1993
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