If you think of the autism spectrum as a seesaw, then I have two boys sitting at each end. By today’s definition, one is “high-functioning,” the other is “low-functioning”. Both are quirky. I love their quirks. But one is super social, talks and engages with those around him. And one is nonverbal, stims in the corner and can’t look at me. Even so, both are very loving. Both will creep up on my lap at different times of the day and the hugs each gives are precious. Did I say they are quirky? And that I love their quirks? But I wish that John could speak. I wish he didn’t have to stim, even as I recognize that it’s his way of self-regulating — it seems to require such energy from him. I wish that life were easier for him to process.
It should come as no surprise that in the beginning, I did not believe that Sam was on the spectrum. How could I? They are so different. John’s autism shows itself daily in unusual hand movements, his inability to look at me, his fascination with light and shadow. His brother, by all accounts, is a people person who almost obsessively needs my attention and physical proximity. Eye contact has never been a problem for him. How could this child also be autistic?
Here in my home, in my family, I have the clearest proof that no two children on the spectrum look alike — even identical twins. I have, of course, come to accept Sam’s diagnosis, though it’s been a long road. I recognize that he has difficulty with transitions and that he is hyperlexic and scripts: his language isn’t terribly functional (‘though certainly adorable), and he has worse sensory issues than his brother. All this, and I’m sad to say that I often hope for a day in which John’s autism looks like Sam’s. If only he’d script. If only he’d sing the abc’s over and over and spell everything in sight. If only he could look at me.
Does this mean I don’t love John for who he is right now? No. I am amazed by him daily and by what he’s absorbing from the world around him. I am in awe of his way of looking at the world. But this is a mother’s wish: I want my boys, my babies, to have happy full lives. I want them to have friends who like and accept them for who they are. I am scared of the cruelty of children. I am scared of the first time that someone teases them for being different.
When the weather turned balmy a few weeks ago, we resumed our neighborhood walks. One afternoon, a group of children playing in the cul-de-sac rushed up to say hi. John whined and flapped his hands when we stopped and the “What’s wrong with him? What’s he doing?” hit me like pellets. Whoa, what to say to a group of 4- and 5-year-olds? How to dissipate the uneasy silence among the other neighborhood moms?
Life on our spectrum continues to have highs and lows, and some days are certainly “higher” than others. John is now getting close to 20 hours a week of therapies and has made strides in his programs. He is such an even-keeled boy, very happy most days (except when I need to go the grocery store or Target or any other place with people and noise and bright lights). Sam continues to thrive in his ASD classroom and has a great new friendship with a little girl named Lila. I love that for him.
We will turn three in four short months. I imagine that our spectrum will continue to morph and redefine itself. And thank goodness for that.