First of all, I’d like to apologize for taking so long to respond to your e-mail. You see, when I read the words Jack and play date in the same message, I got a little nervous.
But I really did enjoy meeting you last year at that ski place in Vermont. I mean, I couldn’t believe my ears when you told me you have four of your own children and then you went and adopted five more from Africa.
I tried to think of something to say about Africa, but I don’t know a whole lot about it. I mean, there are times when I hiss, “Do you know what the children in Africa are eating right now? Nothing!” at my five children if they turn their noses up at something I make for dinner, but that didn’t seem like an appropriate example.
Since we live so close to each other in New Hampshire, a play date just made sense—especially since your 9-year old, Asaminew, and my 10-year old, Jack, have autism. I mean, why wouldn’t they get along and just love, love, love each other? For over a year now, whenever we bump into each other at the grocery store, we’ve been promising one another we would get in touch and arrange a time to get together.
I guess you can say play dates are kind of my autism kryptonite; I want so badly for them to work for Jack, but we usually both come home sweating and shaking.
Oh sure, we go to the movies and restaurants and the grocery store. We take him to church. He’s been to the aquarium in Boston and all kinds of museums and once to see the Rockettes in New York—although that was kind of a disaster, to be honest.
But play dates are not our best scene. In fact, I’m pretty sure I started taking Jack to early intervention because of a play date.
The memory is hazy; something about a roomful of toddlers running and laughing, while 18-month old Jack sat in the corner of the kitchen and traced the same grout line with his finger over and over.
Hazy, yet still raw.
But after I read your invitation, I agreed to bring Jack over for an hour or so after school. We are trying to increase his social circle so it’s wider than our puppy and the couch, and this seemed as good a time as any to start.
Jack, however, did not agree.
He was furious when I told him about it. I barely got him in the car, and then he kicked my seat and screamed for the entire two-mile drive to your house.
“I don’t PLAY. For I don’t KNOW HIM. TAKE ME HOME!”
When we pulled into your driveway, I told him all we had to do was walk up to the door and give you the small purple crocus I’d bought as a little gift. That was all. And if he wasn’t feeling better and more playful and polite after we did that, we could get back into the car and go.
I walked to the door, clutching the wilted flower and stopping every three steps to whisper-scream at him to stop complaining and hurry up. Just as we reached your front steps, he decided he’d hide in the bushes while I rang the doorbell.
“There are STILL CHRISTMAS LIGHTS. On these BUSHES! It is APRIL—“
“Jack! Be quiet.”
Just then, your daughter Masho opened the door and your three dogs sprinted out, excited. They ran right to Jack where he was standing in the bushes, and he screamed the biggest swear word in the world at the top of his voice. I’m not sure if you heard it, but it rhymes with smother-lucker.
Usually before I take Jack somewhere new, I like to warn people a little about what to expect—how he can get overwhelmed pretty quickly and he can seem very, very rude.
I should have warned you he’s in a phase where he swears a lot right now. We’re working on it.
Masho ran after the dogs because they were headed to the road, and then Asaminew ran after her. Jack was shrieking and clutching fistfuls of my shirt in his hands. But you just smiled at me and said calmly, “Let’s see if we can get them all inside.”
So we corralled Asaminew and Jack and the dogs and lured them back into the house with the promise of a snack.
What’s that game called? The one where you chase a mouse or something around and try to bonk it with a mallet? Whack-a-mole. That’s it. That’s exactly what it’s like when I bring Jack to a new place, except minus the mallet.
He bounces and hops from one object to another; from the chess set to the radio to the buttons on the stove. At some point, he usually wanders upstairs to poke around in the closets. Meanwhile, I bounce and hop right behind him, trying to get him to settle down. It’s so much fun!
I should have warned you about that—the Whack-a-mole thing.
I had just started to relax a little when we sat in your pretty kitchen and gave the boys some popcorn. Your two daughters, Masho and Ashereka, were chatting about gymnastics and school, and Asaminew was playing music on his IPad. Every so often he would look to you and announce, “J! Jack starts with J!”
And then Jack, in the spirit of announcements, made his own.
“I am NOT LIKE HIM. I am NOT LIKE ASAMINEW.”
I should have mentioned that Jack feels a little lost right now. He knows about his autism, but he hasn’t exactly made peace with it.
It’s like watching him swim a channel between two islands. He turns his head and looks at the island on the left, the one full of soccer games and birthday parties and Japanese hibachi tables.
Then he turns to the right, and looks at that island. It is full of IEPS. It is full of weighted blankets and anti-anxiety medication and kids who earn things.
He longs for one island, but is diagnosed for the other. He is stuck in the middle, treading water.
I probably should have warned you that I apologize a lot.
I’m sorry, sometimes he kind of lets out this short scream if he hears a sudden noise.
I’m sorry—no, Jack, don’t touch that!—I’m sorry, he has a thing about rearranging DVD’s.
Oh, I’m sorry, now he’s in your refrigerator.
I don’t even know what or who I’m sorry for some days.
That he has autism?
Or that he has anxiety and is easily startled?
Maybe that he doesn’t really grasp social rules or norms?
And when I’m not apologizing, I’m trying to explain.
He had a long day.
He’s taking standardized testing and his schedule was off and he hid under the desk at school during math.
He knows he has autism but he doesn’t like it and we’re trying to show him this is not a bad thing but for some reason he just thinks kids with autism earn things.
And then the ubiquitous explanation; the universal phrase every single autism parent knows by heart.
We’re working on it.
But the truth is, I am sick the explanations. They feel like little more than a flimsy Band-aid on top of a fresh wound.
I can social-story him until I am as blue as a Smurf. I can warn him that if he curses again or knocks over the chess set, we will leave right away. I can tell him that it hurts other people’s feelings when he’s rude, and that the polite thing to do on a play date is play.
But it’s as though all those social stories fly right out of his head the second we cross the threshold, like so many mosquitos taking flight.
“Asaminew EARNS THINGS. I do not EARN.”
You were unfazed. You walked to a cabinet and took out Asaminew’s token book and flipped it open. Because like me, you live with and along and beneath spectrum disorder; you understand the Herculean task of just getting a young boy through through the day. Like me, you laugh and love and cry and work.
Jack leaned toward you. He traced the outline of a token with his finger.
“Does he like it for to earn?” He asked you in his unusual speech.
“Oh, yes, Jack. He loves to earn.”
Watching your heads bent over the book, I decided that all of the swearing and the sweating and the apologies and the explanations are worth it, if Jack can begin to understand he doesn’t have to choose between the two islands.
He just has to keep swimming.
One day, maybe he’ll bring his head above water and look off into the distance.
He will squint into the sun, and see that the islands are actually connected in the middle. Together they make one long, beautiful stretch of land.
And on this land–on this huge, lively, crowded land full of normal and not-normal and autism and tokens and Christmas lights in April–is where he belongs.
P.S. I am really sorry about the way Jack whisper-screamed, “Why? Does Asimenew have TEETH? I thought they didn’t EAT in AFRICA.” when we were getting into the car.
We’re working on it.