New book by Gillette Children's encourages kids to ask about disabilities

Ellie Goodman expects the stares. She expects that kids eyeing her leg braces might blurt out a question that stings, even if that wasn't their intention.

But 13-year-old Ellie far prefers a blunt question to a child who stares and walks away. That's why Ellie, a Gillette Children's Specialty Healthcare patient from Oakdale, was happy to offer feedback on the hospital's new book, "It's OK to Ask."

The 30-page book, illustrated by beloved children's book author Nancy Carlson, features five children with visible physical challenges. Maya, for example, uses a motorized wheelchair, while Tran wears leg braces. Ahmed's tablet helps him to speak.

But Maya also can do ballet. Tran loves to swirl on a tire swing. Ahmed is great at telling jokes.

The book is part of Gillette's broader Cure Pity movement, which emphasizes all that children have in common, instead of what separates them, said Dr. Scott Schwantes, Gillette's associate medical director of pediatrics. The book was written for ages 5 to 8, he said, "because the conversation starts there."

Or, in too many instances, doesn't start there.

"Sometimes it's hard when [people] are timid and trying to be polite and they don't know how to ask because they don't want to come off as rude," said Ellie, who has cerebral palsy, defined as a group of neurological disorders that permanently affect body movement.

Often, kids aren't the problem. Many curious and well-intentioned children are muzzled by a parent, said illustrator Carlson, who spent two months on the project.

"A parent who says, 'Shh! Don't say anything!'… That's the opposite of what a kid wants," Carlson said.

That's why she drew no parents in the book. "Just kids," Carlson said. "Kids solve the problem."

This is Carlson's second project with the hospital. Her "The Lion in the Room," published for Gillette patients in 2012, helped children tackle their fears in the waiting room.

Ellie agrees that children, especially the youngest ones, should be trusted with their healthy curiosity and good instincts. She likes it when kids ask specific questions in a polite way, such as, "What's on your legs?"

"If they know what a brace is, they can ask, 'What kind?' and I can tell them. If they don't know what a brace is, I can explain that."

She might also tell them she is on the A honor roll at Maplewood Middle School and is a voracious reader, swimmer and softball player. In short, she's just like other kids.

Speaking out allows Ellie to dispel stereotypes about people with disabilities.

"A lot of the time, all disabilities get grouped together," Ellie said, "but attention deficit disorder is different from dyslexia, which is different from Asperger's, which is different from cerebral palsy. Even the same disability can look very different on different people."

Ellie recalls talking with a friend about a surgery Ellie was anticipating at the end of the summer. That conversation, about cerebral palsy and surgery and leg braces, made Ellie wonder, "Why can't all these conversations be this fun and easy?"

The book will go a long way to help. Inspired by true stories from more than 25,000 patients at Gillette, it includes a glossary of terms and a discussion guide.

"The book has great strengths, because it has a lot of helpful companion material for parents," Schwantes said.

Carlson is a case in point. "If I'm out with my grandchildren and they want to ask," Carlson said, "we'll go over and ask."

Maria Bell, a recent graduate of Breck School, contributed to this report.

gail.rosenblum@startribune.com

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