Last week we had a new babysitter watch the kids, and she happened to stop by to meet everyone on an afternoon when 11-year old Jack had karate. This is new for us, him having an activity without me or one of the other four kids. He is rarely out of the house alone.
Dare I say it? I’ll just say it. I enjoy it just the littlest bit.
For one single hour a week, I enjoy working quietly with my other kids without constantly calling Jack back to the table to finish his work. I enjoy the blessed silence without the Ronettes blaring or the sound of him sucking on his two fingers while he stims and jumps. I enjoy a little break from autism, and if that is a wrong thing to feel, well, I can’t be right all the time.
As I lead her into the playroom and prayed to the heavens above it didn’t look like Armageddon in there, she paused for a second to ask me a question.
“Okay, so what’s Jack like?”
I hesitated, trying to find the right words to describe my unusual boy. It felt like trying to fit all of the sand in the Mojave Desert onto the head of a pin.
I could have told her about the way he scripts—how he steals random expressions and phrases from the language that swirls around him like a sandstorm. When he was in third grade, he went around muttering, “A-B-C-D” over and over and over.
Now he says “Sunshine lollipops and rainbows,” all day long. Except his tone belies the light, fluttery words; it sounds like Arnold Schwarzenegger is poking you in the eye.
“Sunshinelollipopsandrainbows. Sunshinelollipopsandrainbows. Sunshinelollipopsandrainbows.”
He loves turtlenecks.
He hates mashed potatoes.
He wears pajama pants to bed but no shirt.
He doesn’t sleep well.
He’s in the sixth grade, but emotionally he hovers closer to a child three or four years younger.
I should have warned her that when he’s done with a conversation, he will literally just get up and walk away in the middle of your sentence. It is very unnerving.
Or how he is the worst person at receiving gifts I have ever met. One time, a lovely woman I know from the gym stopped by our house to give him some beautiful maps she’d collected over the years from places like Finland and Australia, because she overheard me saying that Jack was really into maps.
It was perhaps the most awkward twelve seconds I have ever spent on this planet. He kept demanding to know why she was there, and when she presented him with the maps, he tossed them on the counter without so much as a glance.
His skin is so soft.
Sometimes after school, he goes up to my bathroom, closes the door, and lies in the bathtub with all of his clothes on.
I could have told her how one time he walked into my neighbor’s house and grumbled, “My mother would NEVER let us keep it so messy in here. She would MAKE us put away ALL THESE SHOES.”
Or how his teacher lost her beloved mother last week, and he was distraught and worried about Mrs. Steere missing school, and how every second of my life with this child is a teaching moment so I asked him, “Jack, how do you think Mrs. Steere feels right now?”
“Sad. For she is sad.”
Excited, I pressed on, “And how do you think you would feel?”
He turned away from me, annoyed, and grumbled, “How should I KNOW. I did not KNOW her MOTHER.”
He hates reading.
He loves music.
“He is smart,” six-year old Henry interrupted. “He has the autism.”
Just then, nine-year old Charlie brushed past me, wearing his bulky shoulder pads and cleats for football practice, and said, “Who, Jack? He’s the smartest person in our family.”
“Don’t worry,” twelve-year old Joey assured her. “He’ll be fine. I can help you figure out what he needs.”
And Rose added, “You just have to really listen to him. I can do it for you if you’re busy.”
Anyone who knows me knows this: I do not cry easily.
Yet I have shed more tears in the past six months than I have in the past decade over this boy; tears of frustration, tears of rage, tears of worry.
Every year since Jack was in first grade, my husband Joe and I have toyed with the idea of sending him to a different school; one that specializes in learning disabilities and has small class sizes and sensory equipment right in the classrooms.
The topic often comes up right about this time of year, when it feels like we’re working so hard to squeeze my round boy into an academic square, and if we keep doing this, I fear somehow we are going to forfeit something costly, something raw and fragile.
As though we’re playing some weird marital sport, one of us serves the ball—usually right before we’re about to turn the lights off and go to sleep because everyone who has ever been married or in a relationship knows this is the very best time to talk about important things like overdue taxes and budgets and whether or not your special-needs son is ever going to make something useful of himself—and the other lobbies it back.
“Do you think he’s in the right place? Maybe we should look into that other school for him.”
“But I thought you said—“
“I know, I know, I was just thinking about it again.”
Last week I had the opportunity to listen to a short presentation from the director of a special school about an hour away; one that is chock-full of Jacks and others like him.
From what I understood, they focus more on practical, real-world skills. They go grocery shopping. They build things. They work at their own pace and learn according to their own style.
It sounded amazing. It sounded perfect. It sounded like the answer to every spectrum problem I’ve ever had.
After the director finished speaking, I sidled up to her and asked boldly how much it would cost to send Jack. After all, we could cut back a little to give my son the future he deserves. I don’t need that new chair I’ve been eyeing in HomeGoods. We could eat out less often, and maybe the kids could get a second year out of their winter boots.
“Well,” she said. “It’s $95,000 a year.”
Well then, public school it is!
It was as though this record player in my mind had been playing a lovely tune and we were all jumping around in a wheat-colored field and dancing, and when she said the words $95,000 a year, the needle on the player made that really awful scratchy sound across the tiny ridges in the record and the scene changed into all of us homeless—shuffling around in our old winter boots while Jack boards his new bus to his new school, waving gallantly with a big smile because he doesn’t have to worry about learning the greatest common denominator of anything anymore, he just has to go to the grocery store every day and figure out if he has enough money to buy peaches or pears, neither of which he will eat because he really only likes apples.
Then I felt the tiniest, teeniest surge of anger toward my special-needy-apple-eating boy. And if that’s wrong, well, it’s okay not to be right all the time.
That’s the thing about autism. There’s no one to blame. I can’t be mad at him or myself or the teachers or the school or Joe for a diagnosis that simply is.
(I’ve tried to be mad at Joe because obviously, he brought the autism gene into our marriage, but then he tries to blame me and says things like, What about your Uncle Allen? He was totally on the spectrum.” Which, to be honest, I think he was.)
In an attempt to investigate all of our options, I spent the next few days sending e-mails and connecting with Jack’s academic team.
And late Friday afternoon, I sat at my desk and I re-read the notes from Jack’s case manager and his para, and thought about the conversation I’d had with his principal. I can’t lie. It made me a little emotional to look over all the messages and remember all of the comments from these special people in Jack’s special life.
Then I opened an e-mail from Jack’s teacher that I hadn’t read yet. It wasn’t about his homework or grades or anything like that—in her message she told me about a card he made her when her mother passed away, how he warned her not to look at too many pictures, because they would “make her sad.”
She attached a picture of the card, and when I looked at it, well, I sat at my desk and wept big ugly stupid pretty tears that felt and tasted like sunshine and lollipops and rainbows. They washed the sand from my eyes, and for the first time all school year, I saw clearly.
I saw shapes: a circle’s everlasting fluidity and a square’s softening edges.
I saw a boy who doesn’t sleep, quietly unrolling his latest gift in the early morning dawn, and tracing his finger out of Finland, out of Australia, out of the desert.
I saw the hope and tenderness and intention and interest and courage it takes to teach my son empathy and joy and friendship and fractions.
He is right where he belongs.
“Carrie, some days I can just see when his mind is opening to us, and I rush to work with him.”
“We’ll do whatever it takes to make sure he learns.”
“Your mom’s in heaven watching you.”
“He is the smartest person in our family.”
“I will help him.”
“She loves you from pieces and back.”