Here’s the thing, Jack-a-boo. Sometimes I’m not really sure how to parent you.
I mean, parenting is hard enough as it is. But you, well, you are just the tiniest but different from the rest of the kids. And I mean that in the nicest possible way.
How do I mother a child who doesn’t look up when I walk in the room, or answer when I call his name?
A 12-year old who can take apart the DVD player and put it back together again, but insists he heard Santa’s bells on the roof?
A boy who avoids my embrace, shrugs away my hugs, who refutes my sympathetic kisses on a scraped knee, and instead turns to nurse his wounds alone?
Let me love you. I just want to love you.
I want to be your mother. I want to do it right. It’s just that some days, I don’t know how. There is no manual. There are no instructions.
See, there is no cute tour guide with khaki pants and a pair binoculars slung around his neck to lead me through the rocky terrain of tantrums, and anxiety, and screen time.
I mean, honestly, the screen time. Constantly I balance a line between guilt and relief when it comes to you and that ITouch you covet so much.
Guilt because you take every single opportunity to disappear into the online world of movie reviews and cooking videos, and relief because it is ten minutes when you aren’t badgering me about what time we’re having dinner or demanding I name my favorite Disney character.
(Okay, twenty minutes.)
It’s like being in gym class all over again when our teacher, Ms. Smith, set up a balance beam on top of a flimsy orange mat. We waited in line at one end and took turns walking slowly along the narrow piece of wood.
I hated the balance beam. I always fell off of it after only a few steps.
Oh sure, there are all sorts of books written about Autism Spectrum Disorder. If I wanted, I could find tons of articles and research papers and websites that contain the latest statistics and percentages and gluten-free results.
But they talk about the spectrum in the abstract—a theoretical collection of symptoms and behaviors. For me, reading them is like looking at a stick figure a 5-year old drew on a paper napkin.
No eye contact.
Limited social play.
I have you, a real live boy standing tall and strong and frustrated right in front of me. There are shadows and nuances, shades of gray and bursts of color.
He won’t look at me unless I ask him about pancakes.
He never told me his fingers were cold.
He asked me why he has no friends.
These articles, they don’t offer any advice about the hot truck.
You know, the hot truck where you buy lunch every Friday. This was our agreement, way back in the beginning of September when you started seventh grade in a new school.
You didn’t want to go to this new school. You were very, very mad, remember? You were mad because there is no cafeteria, or lockers, or middle-school dances.
So we decided together. Every Friday you could buy from the hot truck as long as you were reasonably good all week. You weren’t very happy about it but you nodded your head just a little bit before you walked out of the kitchen.
Now, from Monday through Thursday, you pack applesauce and crackers and chicken noodle soup in a small silver thermos. And on Thursday afternoon, you ask me nine zillion times for money until I dig through my wallet and find ten dollars. This is your hot truck money, and you squirrel it away in the pocket of your back pack.
Once I asked you about lunch time. Who do you sit with? What do you talk about? Are the tables long with benches attached or round with chairs?
“Nothing. For nothing.”
“Come on, Jack. Tell me about it.”
“I go outside. And look.”
“You look? At what?”
“I look for the snacks. So I can pick. For Friday.”
When you said this, right away I pictured you wandering outside with all the other hot-truck buyers just to stand there and watch them get their cheeseburgers and chocolate milk even though you have Lipton’s noodle soup and a bottle of water sitting in your blue lunch box, and I had a big lump in my throat.
It made me so sad. I mean, it’s not as if you’re packing nutritious, organic, healthy meals portioned out in Bento boxes. It’s not like we can’t afford to have you buy your lunch a few days a week instead of just Friday.
I don’t know if this is something that bothers you, the watching and the planning and the waiting, or if it’s something you enjoy—the watching and the planning and the waiting.
Are you sad? Are you jealous? Does it make you mad, seeing everyone enjoy treats while you crumble crackers into your lukewarm soup?
These are the things I want to know.
I want to know you. Please, let me know you better.
I am learning. Every day, I learn a little bit more about autism’s secret language; the mysterious, changing code of expression without words and gestures with no sound.
I’ve learned to watch carefully if you try to wear your boots all the time, because it means your sneakers are too small.
I’ve learned you have a headache if you start to twist the hair above your right ear, and if you take a shower in the middle of the day you probably have an upset stomach.
I’ve learned to watch for when start rubbing your nose, or pulling at your eyelashes. This means you are getting very nervous, and the orchestra that plays within you is beginning to crescendo.
I’ve learned how to detect when the slithering snake of anxiety beginning to wind around your soul.
I know it’s really bad if you start pulling his teeth out when they’re hardly wiggly, or if you wake up up in the middle of the night.
Mostly, I’ve learned to wait. I am learning to wait.
See, if I just wait patiently with enough stillness I can see and hear and know you. I so badly want to know you. I pick up every crumb you drop like a hungry bird in winter.
“I feel. The happiness. On Friday.”
The thing is, whenever I fell off the balance beam in school and landed on the mat, I took a second to catch my breath and still the world around me. Then I got back on line and waited for my turn.