Spring is the season for miracles and hope. No community has been DENIED hope and progress more than the pre-verbal with autism. Never stop seeking answers. I saw my own daughters spell to communicate with Soma from HALO many years ago. I too was blown away. We were unable to maintain the work - but we will be starting again soon. We must. XOX Kim
By JB Handley
I Was So Wrong About Autism. (Thank God!)
PORTLAND, Oregon—Jamie is sitting at the desk in our home office, directly in front of a computer screen where Dana Johnson, an occupational therapist based in Florida, is guiding Jamie through a process she calls “self commands.” I’m sitting to Jamie’s right, laminated letterboard in hand, serving as Jamie’s “CRP,” an acronym familiar to the brave few undertaking a new communication method for nonspeakers with autism like Jamie known as Spelling 2 Communicate (“S2C”), which happens to be the subject of a new book co-written by me and Jamie that will be released next week by Skyhorse Publishing on March 23rd. (By the way, CRP stands for “Communication and Regulation Partner.”)
On the desk in front of Jamie sit three objects: a roll of scotch tape, a watch, and a pair of sunglasses. They are evenly spaced out and the directive for Jamie is really simple: using the letterboard, tell your dad which object you will be picking up, and then do so. My job is also very clear: beyond repeating what Jamie spelled—and he spelled “I will pick up the watch”—say and do absolutely nothing. Just sit there. And, so I do. Jamie sits there. Dana sits there (on the screen). Minutes go by. Jamie appears no closer to completing his declared task. He tries to get me to tickle him. Finally, Dana adds the first verbal command of this exercise: “Jamie, eyes on it.” Jamie looks down, reaches out his hand, and picks up the watch. We all celebrate!
It’s fair by now if you’re feeling confused as hell, especially if you’re the parent of a nonspeaking child with autism. A year ago, I certainly would have been confused. The last year has been, beyond an insane whirlwind, the most joyous and unexpectedly miraculous time of my life, my wife’s life, and, more than anyone else’s life, Jamie’s.
In December 2019, I got an unexpected text from an autism mom based in Philadelphia—Honey Rinicella—with a remarkable story to tell about her son Vince, another non speaker with autism, slightly older than Jamie. It turn out that Vince, over the course of the few months, has emerged from his silent prison through the letterboard to reveal a highly intelligent, warm, caring, thoughtful soul. As Honey explained to me at the time, “We thought the height of his cognition was ‘I want juice’ and now this!” What is “this” exactly, I ask? Honey delivers the goods. A recent lesson Vince had with his S2C practitioner included the following back and forth, the all caps is Vince’s answer to the question posed by his S2C teacher, meticulously spelled out on a letterboard:
If you’re struggling to understand what’s going on, I get it. Reading Vince’s complex language for the first time 15 months ago triggered a serious case of cognitive dissonance in me, and I did my best to try and explain away what I was reading as some wonderful quirk about Vince that everyone had somehow missed, but this couldn’t possibly extrapolate to my son Jamie, could it? Read more at JB's blog HERE.