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When a Kid Has a Long-Term Illness: How to Deal with School (page 2)

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Updated on Apr 5, 2010

Today, many years after their own traumatic experiences with parenting ill children, Kaffenberger and Hull readily admit that there’s still lots of work to be done. “Rarely,” says Kaffenberger, “do these cases get the kind of attention they deserve.”

Parents, this is where you come in. Although medical treatments are more high-tech than ever, the single most important tool you will have in your work with schools is just plain, old-fashioned straight talk. Start it up immediately, say experts, and keep it up for the duration. Talk when things go badly, and talk when they go well, too. And remember that no matter what happens, a sense of community can itself be life-sustaining.

Today, more than a decade since that awful moment when his daughter was diagnosed, Brian Hull looks back with special fondness at one of those many community gifts: thousands of origami cranes that kids at his daughter's school made for their family during Marissa’s illness. Today, Hull keeps a special mobile in his office—about 250 of the colorful birds. “They remind me daily, says Hull, “of a time in my life when there were so many challenges, and so much community support. I will always have those cranes.”

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