First day of school for disabled girl offers lessons for classmates, parents
Dominika Tamley started school Tuesday.
That morning, despite the fused shoulders that limit the range of her short arms, Dominika managed to shrug her 5-year-old self into her giant new backpack and set out for the brave new territory of kindergarten. The backpack, covered with Disney princesses, was pink and purple, a match for her glasses, her socks and her hearing aids.
What are those pink things in your ears?
My hearing aids.
Why is your face like that?
This is the way I was born.
Dominika's mother, Karen Tamley, had prepared her daughter to meet such questions in school. Be direct, she counseled, keep it simple, move on.
Tamley might have picked up this advice from the Chicago Mayor's Office for People with Disabilities, where she is the commissioner, but in fact, she learned it from her own childhood.
Why are you in the wheelchair?
Because I can't walk. It helps me get around.
Why can't you walk?
This is the way I was born.
A lifetime in a rolling chair has taught Tamley how to deal with the curious, the bold and the sometimes mean, and yet it couldn't entirely prepare her for the moment her little blond daughter, in a princess backpack, trekked into a classroom at West Ridge Elementary School and the teacher closed the door.
"It's on your mind wherever you go," Tamley said, "it" meaning the differences that make other kids stare at her daughter. "When you go to the playground or the pool. Or the first day of school."
In 2006, Tamley and her husband, Kevin Irvine, were applying to adopt through The Cradle in Evanston when they were told about a baby who had been in the nursery for five months. The girl had Apert syndrome, a genetic disease characterized by facial malformations, fused fingers and toes, and a skull whose plates bond prematurely so the brain has no room to grow.
The agency thought Tamley and Irvine would be the perfect parents.
Tamley was born with a rare disorder of the lower spine. Irvine was born with hemophilia, and in high school was diagnosed with HIV acquired from blood products.
They were both activists for people with disabilities.
Within a week, Dominika was home.
In her five years of life, Dominika has had 13 surgeries. Her fingers have been separated. Space has been made in her head to accommodate her growing brain. She has figured out how to swing on a swing set on her stomach; how to hold a fork and a pencil even though her fingers don't bend; how to improvise when she can't raise her arms high in her Tap & Twirl dance class.
"She was oblivious to kids staring when she was younger," says her father. "Over the past year, she has gained self-awareness. Self-awareness is a double-edged sword."
Sometimes, in her effort to figure out how to navigate her differences, Dominika looks at her parents and says, "Your toes are separated. Were you born that way?"
School is the place all kids face the wonders and cruelties of the wider world. It's where kids with disabilities get to know kids without, and where kids without meet those who were born a different way.
Tamley offers this advice on how to approach a child like hers:
If you have a kid without disabilities, let your kid ask the other kid questions. Let your child know it's good to engage.
If your child has disabilities, don't overprotect. Have high expectations. Help your kid figure out direct answers to the inevitable questions.
If you're a teacher, notice if a kid is being teased or isolated. Let the parents know.
To everybody: If you have a basic question (What are those pink things in your ears?) address the child, not the parent. And don't assume kids are mentally slow because they're physically different.
Dominika reports that her first few days of school have been good. Her parents, like parents everywhere, have posted Facebook pictures of her first day. The photos show an excited little girl, like a million ordinary girls, embarking with a princess backpack on the grand adventure called school.
# Source (ty): Chicago Tribune : article by Mary Schmich
September 9, 2011
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