Damn. Something was wrong. I could tell by the look on her face.
I had followed the therapists’ instructions to create a “picture-communication board” for my non-verbal toddler. But when I showed my new board to his occupational therapist, her reaction was not what I expected.
At 2½ years old, my only child had just begun speech and occupational therapies through our state’s Early Intervention program. He was speech-delayed, his fine motor skills needed practice, but he did not yet have a diagnosis. No one spoke the word “autism.” Although it’s clear now that his therapists recognized his autism immediately, they were cautious with their language in front of me, leaving that revelation to our doctors. They knew that I didn’t yet have a clue.
Take pictures, our new therapists said—lots of pictures, around the house and in our community, of things that our son likes. Print and laminate them, attach Velcro, and create a “picture-communication board.” Teach him to point to the pictures when he wants or needs something. Show him how to pull a photo off the board and hand it to you. This will give him a substitute for the verbal language he did not yet have the capacity to use, a concrete lesson in how communication works—offer someone a symbol of what you need, and they can respond.
I was eager to help insure that my son’s new therapies would be successful. I was still a little freaked out that he needed them at all. This was the first time I’d ever had anyone come into my house to work with my little boy, I was anxious about the process, anxious for the outcomes, so new to all of it. I really wanted to get this right.
I went to the fabric store to collect everything I needed–large cardboard, laminating contact paper, Velcro tabs, and some bright paper and ribbon to make the board inviting. And, I took pictures of everything.
So, when his occupational therapist (OT) came over for my son’s next therapy lesson, I was proud to show her my creation: Leaning against the half-wall which separated our living room from the front entrance was a large three-by-five foot board, bordered with a brightly colored 1-inch-wide ribbon and showcasing five or six rows of 4×6 photos depicting many of my son’s favorite things: toys, food, drinks, places we go, people we know.
Maybe I went too far in my zeal to create the perfect board so that my silent son could “talk” to me. I was certainly expecting a more positive response.
I remember the scene this way–
OT: (sees the board) Oh, great!! You put it togeth-… (pause) Oh.
Me: I know it’s kind of big, huh? I got a little carried away—I kept thinking of things that should go on there, so the board kept getting bigger (nervous laughter). Did I put too many pictures on it?
OT: No, it looks great–these are all things that he might ask for. Great, this is good. (pause) Did you…Did you pick out this ribbon?
Me: Yeah! I thought it was perfect! I wanted the board to look inviting and fun. (pause) Oh. I shouldn’t have put that on there? Is it too busy? (pause) I like the pattern…but I should’ve just picked a solid color, huh? I could change it.
OT: No, no it’s…nice. Um…What made you choose this one?
Me: I thought it looked fun. I liked the bright primary colors and the pattern. I don’t know, I just liked it… I wanted him to enjoy looking at the board. (pause) But it’s too much, though, right? Distracting? I can take it off.
OT: No, no, it’s OK. (pause) You really…you picked this out, huh? (pause) OK, no. It’s great, it looks great.
Me: (thinking) What the hell?
She never explained her odd, hesitant reaction. But six months later I walked in to my first autism conference, carrying my new, nervous identity of “autism parent” due to our son’s freshly-minted official diagnosis.
In the conference packet—and plastered everywhere I looked—was the cute, boldly colored ribbon of puzzle pieces that adorned my speech-delayed child’s communication board. The premier symbol of autism.
Yeah. That’s how unaware I was.
To be continued…
***This is Part 1 of a 5-part series in honor of Autism Awareness Month. As the parent of an autistic teenager, it’s hard to remember a time when I wasn’t “aware” of autism, since it is such an integral part of our everyday life. But there was a time – in fact, the majority of my life – when I did not know anything about autism. Throughout April 2016, I’ll be sharing a few moments from the months and years just prior to my son’s diagnosis, when the pieces of the “awareness” puzzle were just clicking into place for me.***