After my oldest son was diagnosed with autism when he was three years old, I joined a group of other mothers who also had very young kids with disabilities to start an afterschool center that would run classes for kids with disabilities. In that particular group, everyone’s child was a boy except for one sweet little girl named Alexandra who had cerebral palsy. As a three-year old, Alexandra couldn’t move much on her own. She couldn’t roll over or speak yet, but she was the only child in the group who laughed along with the mothers and seemed, in some inexplicable way, to understand what we were saying. She might have been non-verbal, but she communicated beautifully, as non-verbal kids often do.
Watching Alexandra as a young child, I began to imagine what her future might be like—as a teenager and beyond—and I first dreamed up the character of Amy. It took me a long time to find the right story for Amy. By the time I finally did, both Alexandra and my son, Ethan, had started high school. They had both made extraordinary gains from the toddlers they once were. Alexandra now walks without any contraptions or assistance. She uses no talking computer because she can speak well enough make herself understood beautifully. Ethan is also much different than he was as a three year old, when he had a vocabulary of about 100 words, an obsession with about five videos, and a need to move almost constantly. Thanks in part to Whole Children, the organization we started ten years ago which now runs a wide range of programs for children, teens, and young adults with disabilities, Ethan is very social with a sizable group of friends he sees regularly there. Neither Ethan nor Alexandra are cured. They are still disabled. Their futures will not look the same as a typically-developing teen.
I wanted to write a story that would honor the specialness I see in all the kids who’ve come to Whole Children. I wanted readers to understand that disability is not a lifelong tragedy. Kids adjust to their limitations, often long before their parents do. They have passions and joys, they have friendships and fears, and this: They have love and relationships. This year, as a brand new 18 year old, Ethan asked Alexandra to attend a “Best Buddies Prom” with him. He picked out a corsage, she bought a dress. They danced together. It wasn’t a night that looked exactly the same as other proms you’ve been to, but it was a glorious night, regardless, and here’s a picture.
About Say What You Will: To Matthew, Amy is the girl with cerebral palsy. She can’t walk without a walker, talk without an automated voice box, or even fully control her facial expressions. But what he doesn’t realize is that trapped inside Amy’s uncooperative body is a kindred spirit. To Amy, Matthew is a just another quiet boy from her school. But what Amy doesn’t know is that Matthew’s mind is consumed with repeated thoughts, obsessive rituals, and crippling fear—telltale signs of an obsessive compulsive disorder that he won’t ever admit to. As the two begin to spend time with each other, they finally open up about their individual problems. And what starts as a blossoming friendship, eventually grows into something neither expected.
Cammie McGovern is the author of the adult novels Neighborhood Watch, Eye Contact, and The Art of Seeing. Say What You Will is her first book for young adults. Cammie is also one of the founders of Whole Children, a resource center that runs after-school classes and programs for children with special needs. She lives in Amherst, Massachusetts, with her husband and three children.
You can get a head start reading Say What You Will here.