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Should you hide the fact that your child has TS or should you let people know about the genetic disease? If you decide not to disclose your child's condition, how do you explain the angiofibromas on the face? How do you handle teasing by other kids or persistent questions and comments? These are problems that most TS parents and children grapple with as they grow up.

While there are legitimate arguments on both sides, Susan Taylor is a decided advocate of openness. She herself has a daughter with TS and a son with cerebral palsy and is always on the look out for any potential teasing and opportunities to explain. While Chandlee, 6, fortunately has a mild case of TS and doesn't attract much attention, kids are often curious about Peter, 3, who wears a protective helmet.

When she sees kids whispering and glancing in their direction, the Annapolis native makes a beeline towards them to explain her son's problem, always making sure that the other parents overhear her. Sometimes she'll even have the kids try on Peter's helmet. "Kids don't really get it, and they don't usually ask further questions, but I found that parents are very appreciative. Often they would follow up with questions [of their own]. Afterwards, they're not scared to linger whereas before they try to get to the other side of the park like we're contagious," she says. To her it's worth it if she could help them feel comfortable the next time they see another child with a problem.

In general, she finds that people are very kind - which is why she doesn't understand how those who have children with disabilities try to hide it. She firmly believes, "Everyone has some kind of problem and if everyone talks about it, [disabilities and diseases] wouldn't be such a weird strange thing. Trying to hide it is the whole problem with the world." Some might attribute her experience to sheer luck, but then again maybe it's not, and it might be worth a try to be open.