This week began with World Autism Awareness Day, created five years ago by the group Autism Speaks as a locus for fund-raising and spreading the word. It comes at the start to National Autism Awareness Month, which was created by Congress back in the 1970s. In commemoration of both, HuffPost Parents is looking at autism through the eyes of parents. Each day we will run an essay about a next stage of parenting a child with autism, starting with the moment of diagnosis, and going through school years, and teens, and entry into the adult world.
I stood in the dressing room of Gap Kids with my 5-year-old son, Matthew, and his 3-year-old brother Andy, clothes strewn all around us . I was trying to find just the right outfit for Matthew's first day of kindergarten. He had recently been diagnosed with autism, and I was devastated, but trying to cheer myself up with this ceremonial milestone.
Matthew squirmed and laughed as I wrestled shirts and shorts over his busy body. When he dove under the door of the fitting room dressed only in his Batman underpants, I grabbed him by the leg and pulled him back in before he made a scene. But the shopping trip was over.
"I think the red shirt looks neat," said Andy. "Can we go now?"
Andy had been an amiable two-year-old when family preoccupations switched abruptly from Halloween costumes and trips to Disneyland to "what should we do for Matthew?". He took walks with me while his big brother was in speech therapy and broke the silence of a droning car ride to the child psychologist with "Well, it's a beautiful day today, isn't it?"
How would having a brother with autism affect him?
"Back-to-school shopping, eh?" asked the saleslady, handing me my bag. "Where do your kids go?"
I felt my face flush. "The little one goes to preschool at Merriewood, and Matthew goes to Burton Valley. He'll be in kindergarten."
"You're kidding! My daughter starts there too! She got Mrs. Miller. How about your son?"
"He's in the special class with Miss Adams."
"The special class?" said the saleslady competitively. "I thought the gifted class didn't start till the second grade."
"The special class for kids with learning disabilities," I clarified.
"Ohhh," she said, coolly examining Matthew, who was now licking the mirror next to the register. "Bless his heart. Bless your heart, for that matter!"
While we had suspected for some time that it was autism, the news still leveled us and made us question whether we were doing the right things. Was I wasting my time driving back and forth to psychologists and speech therapists, time that could be spent doing something more effective? And what was the right thing?
"A woman in my office has a friend whose cousin is autistic," well meaning friends would say, "and here is what she said you should do."
On Matthew's first day of school, I combed his hair and took a picture of him for the scrapbook, hoping that someday I could say, "This picture was taken on your first day of kindergarten, just months before we cured you of autism!" His expression in the picture wasn't happy or sad but passive, like a man waiting in line at the bank.
I arrived at Matthew's classroom fifteen minutes early, hoping that I could watch his new classmates arrive with their mothers. I had been feeling so isolated and was anxious to connect with these women who, like me, had been through so much.
But Matthew and I walked into a full classroom, with no mothers in sight.
"Good morning, Matthew!" said Miss Adams, Matthew's fresh-faced young teacher. "It's nice to see you again. Come on over and we'll introduce you to your classmates."
There were six children in the class including Matthew--four boys and two girls. None of them, except for the blind boy, Adam, looked disabled as they sat at their desks.
"Are we late?" I asked.
"No, they're early. On the first day, the bus drops the kids off early."
My heart sank.
"They all came on the bus? Even on their first day of kindergarten?"
Miss Adams nodded. "Will Matthew be taking the bus?"
I had great memories of my mom driving me to and from kindergarten. I was always so excited to see her by the classroom door waiting to hear about my day.
"No, I like driving him," I said. "I hoped I could meet some of the moms today. I thought since it was the first day--"
"All of the parents should be at Back to School Night next week," said Miss Adams.
I tried to hold back my tears, but I felt so undone--not just because the mothers didn't show up, but by the whole scene.
"You must think I'm a nut!" I said, wiping my tears.
"Mommy cries a lot," Andy confided to Miss Adams, "but she's fine."
"All moms cry on the first day of kindergarten," said Miss Adams, smiling.
"Goodbye, Matthew!" I called from the doorway, but he was already busy with the water fountain. He had recently added a new twist to the water fountain routine. While one hand was under the stream of water, the other was flapping, and he stopped intermittently to jump and dip down to touch the floor, laughing and drooling. Dr. Hoffman told me this was called self-stimulating behavior, and Matthew used it to cope with an overstimulating environment.
"Is he having a fit?" a mother at the park had asked me over the summer.
"No," I responded. "He's just overwhelmed, and he's working it out."
Once in the car, I put on a smile for Andy.
"Do you want to go see Grandma?" I asked.
"OK," he said, peering up at me. "You're fine now, right, Mommy?"
"I'm better than fine," I said, hugging my insightful, sympathetic three-year-old. "I'm great!"