By Lori Brozek
This morning I was cleaning the spam out of an old email account I no longer use and noticed an email from Theresa, an autism mom I lost contact with after she moved away years ago. The email was to some friends about a local incident. She must have accidentally included my old email address in her "Send To" list. It started me thinking about her daughter, Riley.
My son Kyle and Riley attended an autism pre-school class together. There were five boys in the class and Riley was the lone girl. She was severely affected, non-verbal and beautiful. Too skinny, almost frail with long dirty blond hair, Riley teetered when she walked. She had fine features, like Theresa. Delicate as a bird, Riley reminded me of the lyrics to a Richard Thompson song, "a rare thing, as fine as a bee's wing, so fine a breath of wind might blow her away". I'd pass her in the hall and I would sing, "Hey there, Riley-Girl", in my head to the tune of "Georgy Girl" as she went by.
Next to the classroom, parents were able to watch the session through a two-way mirror. Sometimes I'd stay and watch for a while and I'd see Riley, shaking the pom-pom she always carried around. She stared at the pom-pom as she shook it, appeared to be some type of visual stim. Once, she lost track of it and started getting upset. Kyle came to the rescue. He found the pom-pom and brought it to her. A moment of connection between the two that the teacher happily related to me later. When the weather was nice, the kids went outside to the playground. Riley wandered around, moving her fingers in front of her eyes.
I only saw Riley a few times outside of class. The first time, Theresa and I went to an Autism rally in Washington, D.C. and Riley came with us. We stopped at a gas station on the way and Theresa got out of the car. I turned to Riley in the back, too old to be in a car seat. "Hey Riley-Girl", I said, trying to make contact. But she was lost and didn't seem aware that I was there. She stared out the window. I started to cry and looked around, as if I was trying to find something that would make sense of this for me. I got myself together before Theresa got back in the car.
Once, she came to Kyle's birthday party. After cake and presents, we took the kids to a nearby playground. While talking to Theresa, I noticed Kyle and Riley walking behind the swingset. Kyle put his face close to Riley's and laughed. I think he was trying to make eye contact -- perhaps something he saw the teacher do in class. When he did it, Riley smiled shyly and looked away, laughing. They walked on and did it again. And again. And again. I watched them as if caught in one of those moments when the world is as it should be an ordinary mom, watching ordinary kids. A hopefulness crept in. Maybe the future would not be so bleak.
Eventually, Kyle left for kindergarten and I lost touch with Theresa and Riley. They moved to a another state as did I in search of better services for Kyle. Every once in a while Kyle would bring up the name of one the kids in that class and I'd ask him if he remembered Riley. Over time I came to realize that somehow Riley embodied for me the Autism tragedy, even more so than my own son.
Last week, when we were in Chicago at Autism One, a friend marveled at how Harry and Gina Tembenis stayed involved in the Autism cause long after losing their son to a seizure. I told her that if our kids recovered tomorrow we'd still be part of the community because we'll never get over it. We'll never get over what happened. We'll never get over what was lost. Never get over this sorrow. A sorrow so deep, I'll never touch bottom. And Riley. I'll never get over that Riley-Girl. Delicate as a bird. A rare thing. As fine as bee's wing. Fine.
Lori Brozek is a mother of three, including a 13-year old son with Autism. She works for the IRS and is Treasurer of the National Autism Association.