Dana Hall says she feels she’s just getting to know her 6-year-old son, Shawn-Michael. For years, he’s been unable to tell her exactly what he wants, share his favorite color or even go on and on about his favorite movie like other kids because he has apraxia, a rare neurological disorder that interferes with speech.
He said “mom” at 3 1/2 and said his own name at 4 1/2. When it came time for kindergarten last year, she says she especially worried he’d even be able to make friends without being able to use words.
But Shawn-Michael did that and more – he made a best friend, she says, and joined a sports team. He’s managed to “really feel heard,” she says.
His experiences inspired her book, Beyond Words, A Child’s Journey Through Apraxia, released in July and already one of the top special needs books for children on Amazon. She says she’s now working with a speech pathologist to develop lesson plans based around the book.
Hall, a licensed clinical professional counselor, says she wants to reframe the narrative around expecting kids with special needs to learn how to assimilate into the world. Rather, she says she wants to focus on inclusion where all children are learning to be inclusive rather than putting all of the work on a child with special needs to fit in.
Not only a labor of love, she says she’s hoping the book also does well because profits are going back to the kids: The first six months of sales will help fund assisted technology devices for Lemont School District 113A. After that, proceeds will go to Apraxia Kids to help fund research.
“Our kids don’t need to be fixed, they’re not broken. We need to learn how to listen to them differently,” Hall says.
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This article also appeared in Chicago Parent’s fall 2020 magazine.