Oh, Jack. I don’t know where to begin. You’re so different lately. You’re angry and irritable, and for the life of me I can’t figure out what’s wrong.
You’ve always been a bit on the cranky side—you’re what someone might call a curmudgeon, which is a big fancy word that describes a person who complains a lot. You’re not exactly a glass half full kind of guy.
You know, like if one of your turtlenecks isn’t clean or there isn’t any ice cream after dinner or we have a party that runs a little late and you miss bedtime, you get aggravated. That kind of thing.
But this, well, this is different. You’re so negative, so unhappy. Nothing anyone says or does can make you smile. You’ve lost all interest in any of the things that used to bring you joy.
When you were about four years old, you had a toy that looked like a kazoo, except instead of blowing into it to make noise, you had to blow as hard as you could to keep a small orange ball afloat on the top. I think an occupational therapist gave it to us to help you improve some kind of motor function. You loved it.
That’s how I feel these days. I feel like I’m blowing big huge gulps of air just to keep you afloat. I am singing and dancing and clapping and joke-telling, but after a while you sink back down again, like a balloon that is leaking air through a tiny, invisible pinhole.
Is it depression? Or some kind of early pre-teen hormones? Or anxiety?
Is it the holidays? Is all the gaiety and chaos and festivities too much for you?
I mean, you used to love Christmas. As in no-you-cannot-start-putting-decorations-up-Jack-it’s-only-October kind of love, but not this year.
This year, you could care less about your favorite ornaments and red and green pillows. You hide in your room, alone. You sit on the couch, alone, and if someone walks into the room you get up and leave. If we’d let you, you would eat alone.
In fact, that’s your favorite thing to say, “Leave me. For ALONE.”
You’ve bitten your fingernails down until there’s nothing left, and you’ve been picking at your face and chewing on your clothes until your sleeves have big wet spots. It’s like you’ve turned your anger inward, and you’re trying to erase yourself one cuticle at a time.
You toss and turn in your bed all night long.
Your obsessions have returned with a vengeance—every day you watch the same Mickey Mouse clip over and over, you wear the same two shirts, you ask me what time it is fifty million four-hundred times a day.
You talk to yourself.
And underneath there is a tenacious, slippery rage, like a hot volcano that might explode and swear and scream any second.
Then the other day: eruption.
The school called around 3:15 because you wouldn’t get on the bus for some reason. Then you tried to run away into the parking lot. I jumped in the car and raced over, and my heart was beating so fast. When I got there, you were pacing in the hall and kicking the chairs. Your face was red and tear-stained.
On the short drive home you told me you hated yourself.
You called yourself stupid.
You said I never listen to anything you say.
You cried and sobbed and threatened to open the door and jump out of the moving car.
I thought my heart would shatter, watching you twist your jacket and rub our fists into your eyes. I wish someone would tell me what to do. I don’t know what to do.
Just a few days ago I was talking with someone who is dear and special and wise, and I was telling him how distant and angry you’ve been. He listened for a moment and then he said, “Let me ask you something.”
Jack, when people say the words let me ask you something, they are serious. They want a thoughtful answer.
So I stood very still and I listened. I figured he was going to ask the same hard, ugly questions I ask myself at 4:00 am when I hear you rocking in your bed; is someone hurting him what is wrong is he depressed is this his anxiety could it be hormones what is wrong.
But he didn’t ask me any of that. Instead, he asked, “What is this like for you?”
Right away, my eyes welled up with salty hot spicy tears.
What is it like to watch you spiral away from me?
What’s it like to orbit you the way the moon orbits the Earth; waiting and circling and hoping and praying, all while regular life swirls around us both like a sandstorm on Mars—ear infections and book fairs and dinner plans and geography bees?
It feels like I am standing on the other side of a window from you and it is closed. I can see you perfectly, but I can’t hear you and you can’t hear me and we are both trapped inside some weird silent bubble.
It makes me feel broken inside, as though I am failing at a fundamental piece of motherhood. It makes me ache.
It makes me feel tired. I am tired of Mickey Mouse. I am tired of reminding you to stop biting your fingernails and chewing on your shirt. I am tired of the searing hot, painful fight.
I am tired of autism’s unending game of cat and mouse, hide and seek, cloak and dagger.
Where did you go, Jack-a-boo? Where are you?
Come back to me. Come back to us. Come back home.
I know you’re in there, my tender, sweet, funny, fragile boy. I miss you. I miss having you with me in the grocery store and I miss your lopsided cakes and your golden pancakes.
I miss your surprise one-armed hugs, like the time I was carrying a basket of laundry down the hallway and we passed each other and all at once, out of nowhere, you wrapped your arm around my waist.
You leaned into me and you almost knocked me over because I wasn’t expecting it and we laughed big deep belly laughs because we were so surprised.
I miss your laugh.
Jack, a lot of people like to take the chance this time of year to talk about how grateful they are for big important shiny things like health and happiness and faith and family.
Lately, these things feel too big for me. They feel like giant fluffy clouds floating high above my head, and every time I try to catch one of them and hold it in my arms, it vanishes into thin air.
I think when it comes to gratitude, sometimes it is better to start small.
I am grateful for the treadmill, and David Sedaris, and sugar cookies with lots of frosting.
I am grateful for your unflappable Daddy, and your laughing, joke-telling, silly dancing brothers.
I am grateful for every mother and aunt and grandfather and teacher and neighbor and sister who read what I write.
I am grateful for the way people can follow the colorful threads of our story, and weave it into their own. Together, we are building autism’s brilliant, mysterious tapestry.
I am grateful to know I am not standing alone on this battlefield.
I am grateful for an 8-year old girl who always knows how to make her Jackie smile.
I am grateful for windows that open.
Jack, right after I finished writing this letter to you, I heard a song on the radio that I haven’t heard in a long time, and I thought it was the most perfect-est song in the world to describe the autism in our lives right now.
So I looked through all of our pictures from the last two months or so and picked the ones who look like you used to be and who you are; ones where you are sad and laughing and mad and distant and happy.
When I watched them all together, I thought one thing: I know you’re in there. And I will wait for you.