My work morning starts with a long stare at the “to-write” list. It’s about to spill off the whiteboard. There is the stack of script notes my husband, Brian, is eager to see us turn into pages. We have a meeting with a film producer next week, and we need to sell our script, or else negotiate with our landlady. There is my new novel that exists as only 60 typed pages, some notes in a Moleskine knockoff, and a very good third act that lives only in my head. An idea for a short story has hit me, which will put off the novel for another day.
There’s also our 5-year-old son, Henry. He is on the autism spectrum.
Henry was up at 4 a.m. We give him melatonin supplements so his body can understand nighttime. It helps but doesn’t always work. I try to put him back to sleep by sitting with him in the recliner. His legs are like fire hoses filled and streaming, flailing around with their own power. He can’t relax. He looks out the window at New York City across the East River and declares, in his oddly formal cadence, “It is night,” then runs around in a panic not understanding why it isn’t daytime yet.
He’ll be up until he leaves for school. I drew night duty, so I’ll be up with him, though I’m good at sneaking in another hour of sleep while a bowl of dry Cheerios for Henry sits precariously in my hand. Next to me, Henry will munch and watch Super Why on PBS, though he has entire seasons memorized. His mimetic skills are astounding. Since the age of 1, he could read road signs and billboards. His aunt recently prompted him to read quotes from Hamlet, but for Henry it’s just characters and symbols. He doesn’t understand why we communicate, or at least he doesn’t grasp it effortlessly the way that nonautistic children do. The moment I first heard him say, “I’m hungry” was more emotionally explosive than any poem I’ve ever read or written.
Henry and I are on the stoop when the school bus driver calls. They’ll be half an hour late with pickup. This means taking Henry inside and trying to explain why he can’t take off his socks and shoes and coat and then pants and shirt. There are 6.5 million kids with special needs in the U.S., and 520,000 of them are on the autism spectrum. When the bus is ready for us, I carry Henry’s 45 pounds back down three flights and envision the same scene in households across the country: thousands of parents trying to keep cool, trying not to throw their hands up in frustration. Maybe even counting the hours to when socially acceptable drinking can begin.
With Henry off to school, I’m at last in front of my laptop. I flash back to how writing happened before he was born, how much time I could waste on just thinking. During my first novel I could write all day. Brian would bring me dinner, and I’d type one-handed while eating. Brian accepted what it meant to be heading into a novel, 20 pages written in one swift sitting: It meant not stopping long enough to break for a sandwich, not long enough to doubt myself, and getting up the next day and doing it again. Being selfish is vital to creativity; it’s not negotiable, until it is.
* * *
“Writing,” Susan Sontag said, “is finally a series of permissions you give yourself to be expressive in certain ways. To invent. To leap. To fly. To fall. To find your own characteristic way of narrating and insisting; that is, to find your own inner freedom.”
Brian supported my first novel by bartending. In fact, it was a condition of our getting married: that I write. He saw me as being most complete in that state. Since then we’ve traded off work, chores, and writing time. But now we live with someone who doesn’t understand those trade-offs. If I quoted Susan Sontag to our son, he would probably think for a second, then respond with an alphabetized list of 100 dinosaurs.
When Henry was a baby, I wrote at my computer while he sat in his bouncer, watching his mobile and happily cooing beside me. But from age 2 onward, he was hyperactive and required constant attention. I put him in day care two half-days a week, as much as we could afford. It was at day care that we were first told Henry was different; he required more attention. Through brittle smiles, the day care intimated that Henry might not be able to stay.
I was terrified that, by age 3, my son would be expelled. As I worked on a novel during the day care hours, we entered the realm of therapists—both occupational and speech—and learned to negotiate city agencies. That novel grew into hundreds of pages without an ending in sight. Looking back, I think I was trying to control something big because the world was taking away control over my child. Throughout all of this, I taught an online course called “Finish Your Novel.”
* * *
I once watched Henry run into the playground, his fingers held up in front of him in a dreamy state, like Robert Smith in the video for the Cure’s “Lovesong.” A friend was with me.
“This is an autistic thing he’s doing,” I said of Henry’s movements.
She shook her head. “No, look, he thinks he can grab the sunlight.” She was probably right—and I was too.
Henry entered pre-K at a school two blocks from our apartment. I would sit down to write, only to be called away by a nervous teacher about how he was in “emotional distress.” It was a euphemism for screaming and flailing at sounds—applause, bells, and shelter-in-place drills—that overwhelmed his sensory system. During his third week there, he told Brian at pick-up, “I hate school.” It was one of his first full sentences.
The dread of stern talks from teachers ate into my ability to get inside my work. “I’m really worried about him,” his teacher told me. Her concern was real, but it implied mine wasn’t. The therapists at his underfunded school were overbooked and couldn’t guarantee his therapy. Several days a week, we pulled him early to take him downtown for one-on-one sessions.
I remember sitting in a tiny office with Henry’s speech therapist, and she said, out of the blue: “You’re a good mom. You’re doing everything you’re supposed to.”
People had told me I was a good writer, but no one had ever told me this. I had been a mother to an intense kid 24 hours a day for four years. I don’t know how I didn’t cry on the spot. I bawled as soon as I got home.
The truth was, I felt like I had become bad at a lot of things. Before Henry, I never missed friends’ readings and events. I hosted them, interviewed other authors; I reviewed books and wrote articles, I mentored and boosted. This is what we mothers do: withdraw from our communities, only to feel guilt.
* * *
At 3 p.m., I get a call that the bus has broken down. I’ll have to go into Manhattan to get Henry. Unlike all other New Yorkers, Henry loves Union Square station. Brian thinks the sound—a constant metallic storm—acts like a gating mechanism for his senses, the white noise giving him a balance. I collect Henry from his new school, which is specifically for autism spectrum kids, and we squish into a packed subway car. He wraps his hand around the pole, crushed by tall adults on all sides. I look down at the top of his head. “Little teeny tiny Henry is on the very crowded train,” he yells joyfully. He’s talking more and more these days and has a taste for third-person POV. At these moments, Henry’s disability begins to look a lot like solid storytelling.
At home I make Henry a quick toaster waffle, but he wants chicken nuggets. He screams for 15 minutes while the nuggets cook. I’ve broken the usual pattern, and patterns are his only way of understanding the world. The screaming is nonverbal, pure pain, as if I have purposely done this to wound him. I feel his distress shooting through my bones, the same way I did when he was an infant shrieking for me to nurse him—a sound that reverberated all through me until he was taken care of. It’s hard not to view him as an extension of me.
It’s OK, I tell myself. He’s feeling the length of the day, and so am I. We’ve both had better ones.
Once, Henry picked up my novel and read out, “The Blondes by Eric Carle,” attributing it to the author of The Very Hungry Caterpillar rather than me. I was impressed and only a little bit offended. He then sat down and turned every page, studying it. He knows it’s dedicated to him and that I tell stories for a living. That was a good day.
It’s 5 p.m., and this is a day I have to ask myself whether I can afford any time away from him to go into a fictional place. I think about the dozens of male novelists I’ve read who claim they only write for themselves and they push all other concerns aside. I’ve never known if it’s male bluster or luck. For me, writing is work. It’s a paycheck, therapy, community, and responsibility to my family. This is what I most want Henry to understand someday.
As he grows and develops more language, he’s teaching me about his world, too. Last week while watching a squirrel in a tree, I asked if he could hear the sound it made. He stared up at the animal and said, “I see the sound,” offering me a bigger understanding of how his sensory system is different from mine.
I was left thinking: What does my voice look like to him? When we hear buskers beating steel drums in the subway corridor, what shape do the beats take? What about applause and cheering—the noises that terrify him? This is how my son has changed my writing the most. I focus on the most vivid thought or image. I understand that everything around writing is as important as the writing.
* * *
He eats the chicken nuggets while watching Finding Dory. He’ll be happy until the sad part. I go back into my story. Only 4 feet apart, I forget momentarily that he is there. There’s a side of me that needs to shut off, escape. I can still tap into it.
I close my eyes and congratulate myself: I am, through all of it, still a writer.
At 8 p.m., as Henry falls asleep in my arms, he recites the alphabet: his calming mantra. I think he’s asleep, but then he tells me, eyes closed, “The alphabet is the truth.”
“Yes. It is,” I reply.
For the first time all day, I feel like we understand each other. His body relaxes, and mine does, too. I listen to his breath becoming lighter, climbing higher, into that other world of dreams.
