In September, my son James started at his new school. I decided not to tell his teachers about his autism diagnosis. I was determined that he not be labeled. As a teacher myself, I knew what labeling did to a child -- it hurt them, it stunted them. Even though I worked hard not to categorize my special needs’ students, I still sighed when I saw the words “learning disabled” on a student’s file at the beginning of the year. To put it simply, it meant more work for me.
I was determined that wasn’t going to happen to James, so I didn’t say a word to my son’s teachers about Asperger’s. I didn’t even put it on his medical form. Although I felt mildly guilty about it, I reassured myself that James was, after all, on the mild end of the spectrum.
At the end of the first month, “Meet the Teacher” night was held at James’ kindergarten. The children were going to sing all the new songs they had learned first, and then “escort” us to their rooms to meet the teachers.
But we never made it to his classroom. James took one look at the crowded hall, dropped my hand, and darted for the door.
I stood still for a second, in shock. Then I ran after him.
Mothers and fathers stared at me as I clattered down the hallway in my new heels (bought especially for the occasion.)
“Stop him!” I cried.
James darted and weaved through the crowd though, and I imagined him darting out the door which was right on a busy street. I my heart clutched, thinking about it.
Finally I caught him by the back of his shirt at the end of the hallway.
“You can’t do that!” I cried, gathering him into my arms.
James looked at me with his big, beautiful hazel eyes. “I don’t want to sing in front of people,” he said.
“It’s okay to feel shy and scared,” I told him. I thought quickly to myself. ‘Do I say the word now?’ It would be the first time I had ever said it to him. Was I really going to do this? But he could have died!
“It’s part of the Asperger’s,” I said.
“Asperger’s?” he said.
“Yes, that’s something you have. That’s what makes you run away from things you are scared of,” I answered.
“Asperger’s means afraid?” he asked.
My heart turned a corner. That was probably the best definition I had ever heard. And I had read thousands of articles on the disorder since James had been diagnosed just four months ago. I had read books, and “sat” for hours in online chats with other parents whose children had Asperger’s, but never had anyone put it so succinctly, so accurately, as my little boy.
“Yes. Asperger’s means afraid,” I answered.
I let the words sink in. “Asperger’s means afraid,” I repeated, probably talking more to myself than him. That explained why he didn’t like crowds. That explained why he wouldn’t look people in the eyes. That explained his fear of loud sounds, different tastes, changes in routine.
Then I took a big breath and continued speaking, this time to him.
“And my name, Mom, means ‘Help.’ It means that I will help you think of a different role in the concert. Maybe you can stand on the end of the riser, so you don’t have to be out front, or I will stand to the side, so you can see me.”
But James wouldn’t go back. I begged and bribed, but he would not go inside. Finally I led him to our car and strapped him into the car seat. I cried all the way home. I had wanted to see my little boy perform. I had wanted a “proud parent” moment. Instead I got a near-death experience.
But I had learned something that would change my life, and James’, for the better. I had learned a new way to think about Asperger’s. I slipped off my high heels. I needed my feet firmly on the ground to drive, to drive us through this lifetime, and get us home safely.