When my son was first diagnosed with autism, I remember how that really dim lightbulb in my head brightened a little. I realized many things about him that I had not really thought about with the connection to “autism.” His very few words. His meltdowns. The need to repeat things to him over and over. His repetitive speech. I still did not understand autism – at all. I’m not sure I do much better right now, but at least, I’m trying.
My son is, for all intents and purposes, an only child. (He has adult siblings who have not lived with him on his dad’s side). I am an older mom. I have no siblings. Before my child was born, absorbed in the practice of law, I had no close friends with young children to whom I was exposed regularly. Basically, I was completely ignorant of how a young child should talk and act and behave. So, I was very ill-equipped to understand my own child’s differences from others.
One of the things that came with the diagnosis was that the hyper-focus I’d had on my son, to the exclusion of all others, changed. I liken it to me being an intense, zoomed-in camera. When the diagnosis came, my focus widened a bit. I zoomed out.
I saw the children around my son for the first time. Children who could communicate with ease. Little people, they were. They could speak in complete sentences. They could express thoughts fluidly and quickly, like an adult. They would talk about what they wanted. They would communicate concepts like “good” and “bad” with ease. They would categorize themselves. They would show-off and seek their parents‘ attention.
When I first really saw that, it broke my heart. I longed for my son to be able to communicate like that with me. Don’t get me wrong. We have our own way of communicating. It does not always involve words. It involves trial and error. Patterns established after painful missteps that resulted in meltdown after meltdown. Sometimes, I feel like I’m walking on glass shards.
One of the more painful things I recall vividly, shortly after the diagnosis, was when I was just trying to get through a mall trip without a meltdown. I was tense, holding his hands, trying to avoid any triggers and get out. We made our way to the top of an escalator. At the top, was a tiny little boy. The kind of little boy whose butt is extra padded because you know he’s got quite the diaper on underneath. He was half my son’s size. He was probably no more than 2 years old. And he was at the top of the escalator. He was with his dad, looking down through a glass railed area on the second floor. His mom was down there. He said, “Daddy, look! Mommy’s down there.” And he pointed.
It was at that moment that I realized that never, in four years, had I ever heard my son get my attention by using the name, “Mommy.” He had never said, “look” to direct my attention to anything. He had never tuned in to spot me in a crowd or point me or his dad out to anyone. If anything, he would focus on an object to the exclusion of all other things – and certainly, people.
In that moment, I realized I might never hear him say, “Mommy! Look!” and I resolved myself that it was simply the way it was. That was a loss -to me- not to him. In that moment.
That was over a year and a half ago.
Over the last week, he was playing Wii games. Lots of Mario time. Lots of PacMan time. And over and over, my son said these words to me:
“Mommy! Watch me!”
In that moment. Just like that. Times 100, at least.
As parents, we try so hard not to see the differences – not to make the comparisons, but we can’t help it. Sometimes, it smacks you in the gut and knocks the wind out of you when you don’t see it coming. And sometimes it is depressing.
So, if you accidentally get socked in the gut sometime, and feel down, remember this story.
And, by the way, thank you Nintendo and Namco. You brought me a gift this year you never knew about.