Thanks for letting me visit today to talk
about researching Down’s syndrome for my book, DEAD ENDS.
In addition to being an author, I am also a
journalist, and one of the jokes we journalists like to crack behind the scenes
is, “Never let the facts get in the way of a good story.” Of course, when it
comes to the end result, we always stick to the facts, but first, we let
ourselves imagine – let ourselves get creative.
I take the same approach to researching my
books. I never let the facts get in the way of a good story. Not in the first
draft anyway.
When I was writing Dead Ends, one thing I
knew from the very beginning was that writing a character with Down’s syndrome
was no different from writing any other character. I already knew that people
with Down’s syndrome are as diverse as people without it. That gave me the
freedom to think of Billy D. as confident, outspoken, clever, trusting and
manipulative. His character was built on those qualities, and his condition was
secondary.
Of course, I had to research common medical
problems associated with Down’s syndrome, and certain things came into play
right away, like how Billy D. looks and speaks. I know the common facial
features, but I spent a lot of time on the websites of Down’s syndrome
organizations to better understand some characteristics, such as the tongue
thrust and how it might impact speech pattern and vocal quality. From there, I
watched countless videos featuring children and teens with Down’s syndrome,
mostly to listen to them, to hear the variety in their voices, but also the
similarities, so that I had a strong sense of where Billy D.’s voice fit in.
Once I had a first draft, I consulted my
father, who happens to be a speech and language pathologist. He works with many
children with Down’s syndrome, so he offered suggestions not only on Billy’s
dialog but also any behavior that seemed out of place.
In the final stage of editing, I asked a
coworker, who grew up with a brother with Down’s syndrome and is now an
advocate for the Down’s syndrome community, to read the manuscript with fresh
eyes. Her insight at that point was invaluable. In a sense, she gave me
permission to give Billy D. intellectual struggles. I had pulled back on his trouble
reading and writing and spelling, but thanks to her, I was able to write some
of that back in. I was so afraid of writing a “typical” character with Down’s
syndrome, that I had taken him beyond atypical into the realm of potentially
unbelievable. This final reader showed me that giving Billy D. struggles
because of his Down’s syndrome didn’t take away from his wonderful traits like
confidence. It only made those aspects of his character shine brighter.
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