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Published Wednesday, April 19, 2000

JOE GAROFOLI

A battle to let boy feel alive

THIS IS NOT the way Michele Gouveia-Smith wanted to make her point. She didn't want to picket in front of her children's Oakley school with a dozen friends and family members, holding signs criticizing the principal and the district's superintendent. Yet here she is, tears rolling down her cheeks as a parade of parents in minivans roll by Monday to pick up their children.

"I don't want to do this," she says apologetically. "But it's the only way I can make sure that my son isn't ignored. Cameron is alive when he comes to school." She pauses, then repeats, "Alive. He's not a rock like some people may think he is."

Sitting in a wheelchair next to her is Cameron. He is legally blind, fed directly into his stomach through a tube and cannot speak, but he can make sounds. His giggly smile would melt you.

Ever since last fall, 8-year-old Cameron has spent three hours a week at Laurel Elementary as a way to get some social interaction with other second-graders. His mom takes him to school, picks him up and remains with him during their one-hour visits. For her, it's more than worth the two hours it takes to bathe, change his diapers, dress and feed him and transport him there.

But those visits may end soon. Administrators have told Cameron's family there may not be room for him there after this school year, when new students from the freshly minted nearby subdivisions may force Cam and other intradistrict transfer students back to their home schools. Besides, an administrator told reporters, having Cameron in class can occasionally be a distraction for students in a district that wants to improve its test scores.

On one level, this is a question of "what's best for the school" vs. "what's best for one child." It shouldn't be. What's best for the school may be what's best for this child, because having Cam in a mainstream class teaches something that no test score can measure: Respect.

Connecting

As his mom picketed in front of the school the other day, Cameron sat next to her, sporting one of those black fleece hats that hipsters wear, John Lennon wire frames, and every so often unleashing that giggly smile. Like whenever one of his second-grade classmates stopped by on their way home to touch his hand, hug him or say: "Yo, Cam." One boy grabbed both of his hands and danced next to his chair.

Whenever they stopped, Cameron would light up, giggling and gripping his friends' hands and shirts in raw joy. He was alive. And by having him in class, Cameron's classmates are learning to respect life in all its forms. I wish you could have seen the look on the face of the Laurel student with the two-tone hair when he was told that Cam might not be back next year. "That's weak," he said, his face curling into a defiant mini-scowl. He looked down at the wheelchair and assured onlookers, "Cam's cool."

In second grade, that's the ultimate. And a lesson that won't be covered in the additional three hours of Cameron-free cramming for the STAR test Laurel students would get if he isn't around next year.

For Cameron's family, this is a pull-out-the stops struggle. Sure, a county special education teacher visits him at home four hours a week. But that giggle, that spark in Cameron's face when he sees his peers is one of those tiny joys of life that families of a child with a disability live for. It's what keeps everyone going after a another night of listening for the alarm to go off on one of Cam's vital signs monitors.

It has always been that way. When Cameron was born, doctors said there was little chance that he'd lift his head. Eleven surgeries later, he sits upright in his wheelchair, can pop soap bubbles, balance on his knees and has mastered much of the rest of what's in his learning plan.

Michele wants Cameron to stay at Laurel because he grew up here. He used to join his mom when she volunteered in his older sister's class, and grew comfortable with the people here. Now, he's so comfortable that when Cameron received an award this week for friendship, he wasn't shaken when the packed assembly gave him a round of applause. Usually, such a sudden jolt overwhelms his sensory intake. But this time he giggled and soaked it in.

It was another of those little joys, a lesson you won't find in books.

Will he be back?

Nothing will be decided in Cameron's case until June. Some administrators have said he might be better off in a class with other disabled students. Maybe. Yet hearing that makes you wonder if that person ever saw the look on Cameron's face when a classmate holds his hands and dances with him. Or the look of shock on a Laurel parent's face when told that Cameron might not be back.

Yet one Oakley parent offered a word of caution to Cameron's family. This mother of a student with a disability told me Tuesday that third-graders are different than second-graders. That towards the end of third grade, students who used to be friendly towards her child grew colder. Didn't include her in games or talk to her as much. "It's the beginning of the age where everyone wants to look the same and be the same and if you're not, then, well ... " the mother didn't finish the sentence. She didn't have to.

Maybe things will be different with Cameron. Maybe his classmates will have gained so much respect for him that they'll continue to make him feel alive. Hopefully, they'll get the chance next year.

Joe Garofoli writes about life in the East Bay. He's at 925-943-8061; joeg@cctimes.com




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