“Why don’t you just die?” my nine-year-old son calmly asked me.
“What?” I exclaimed.
Six years after his autism diagnosis, I would have said that Vance could no longer surprise me. This moment proved me wrong. Used to his non sequiturs, missed cues, lost nuance, and—until recently—only flickering interest in his fellow human beings, I still felt knocked over by this question. Although we have had the usual challenges of families, as well as those unique to autism, we find each other companionable and amusing. He had not even been upset when he asked the question.
“That’s a very bad thing to say,” I told him severely.
He was surprised. He did not understand why it sounded mean.
Battling late-summer allergies, I sneezed.
He winced and asked, “Why is it a very bad thing to say?”
You have to be careful at this kind of intersection, where V can adopt the voice of a combined lawyer, psychiatrist, and pool shark. He genuinely does not understand how most of life works, but like a neurotypical kid he does understand how to prolong a diversion. Almost his every thought is a diversion from the preceding one—the same difficulty I have in writing books.
The problem that day was that Vance could not get his mind around the concept of death. He has never lost anyone close to him; his maternal grandparents died while he was a toddler, my mother the year before he was born and my father decades earlier. Trying to explain why we cannot just stroll across an intersection or bolt across a parking lot, both of which he used to do, my partner Mae and I told Vance that if a car hit him, it would hurt terribly and he might even die. “What does ‘die’ mean?” he has asked in many contexts.
He genuinely does not understand how most of life works, but like a neurotypical kid he does understand how to prolong a diversion. Almost his every thought is a diversion from the preceding one—the same difficulty I have in writing books.
“Well, you stop moving,” I replied.
And Mae would add, “And you stop thinking.” She has been close to him for half his life now and knows that he requires specifics, not generalities.
“And,” I would say, “you stop breathing.”
How did this information lodge in his mind? He revealed the answer when, clearly annoyed, he asked me why I was sniffling and coughing that day. “I have allergies to pollen,” I explained.
“From plants,” he said. I’ve been talking about the natural world around us since he was a baby. At three he would startle people in elevators by observing randomly, “People are mammals.”
“Yes,” I answered sniffily. “Pollen from plants floats in the air and gets inside my nose and that tickles and makes me sneeze.”
“I don’t like that sound,” he said in a more pleasant tone than it reads on the page.
“I don’t either.”
“Will you please stop that sound?” He politely asks the most unreasonable-sounding questions.
“I can’t. I breathe funny right now just because I’m congested, which means that my nose is stuffy.”
Then he remembered something he had been told would cause such breathing noises to stop, so he suggested casually, “Why don’t you just die?”
• • •
When he was three, Vance would make his shadow wave, stomp, dance. Then he would come and get me so he could have a Shadow Dad vaudevilling across the floor with Shadow Vance. We reached for each other and saw our shadows hold hands.
• • •
My sense of waking like an empty vessel and being filled up with each new day has prompted me to maintain an erratic journal. I began in 1973 at fifteen, scrawling with scratchy ballpoint pens in looseleaf three-ring binders from school. I was in a wheelchair because of what was diagnosed as juvenile rheumatic arthritis following rheumatic fever, so journal-writing became my way to think aloud: reports on the chipmunks and mockingbirds I watched outside the window, remarks about Robert Heinlein’s novel Starman Jones or an episode of Banacek, and comments upon family arguments.
My erratic visits to the journal changed after Vance came along. When he was born, the week I turned fifty-five, gifts from friends included a few “baby books,” which look like engagement calendars for the past. To prompt parents to record milestones, they provide spaces for the inclusion of footprints, birthday cards, the date on which your offspring first became a biped or spoke your parental title. However, as I look back over the decade of Vance’s life—including during a pandemic—I find that I have specialized in noting incidents for which no calendar-maker would contrive a heading. I need titles such as “That Day at the Beach When Vance Learned about Crab Holes.”
“V grasping toys more now with fingers,” I wrote when he was not quite three months old, “rather than trying to draw them toward him with a clenched fist. He sits staring at his fist for a while before he opens it. Today he held out his fist, unfolded the fingers, and in slow motion reached a tiny forefinger out to touch my knuckle.” Thanks to this entry, I remember that during Vance’s slow move toward me and his gentle touch—this contact between old life and new life, his growing occupation of his own body—I almost heard the Strauss fanfare from 2001.
… as I look back over the decade of Vance’s life—including during a pandemic—I find that I have specialized in noting incidents for which no calendar-maker would contrive a heading. I need titles such as “That Day at the Beach When Vance Learned about Crab Holes.”
On that same day, I noted something that did seem a milestone: “Vance now recognizes me in the mirror and smiles at me.” For Charles Darwin, a similar moment proved a key incident in his thinking about the differences between his first child, his son Willy, and the orangutans he was observing at the London Zoo during the same period in 1840. I read about this moment decades ago, and watched for it when Vance came along.
The second role model I seem to have adopted is about as far as you can get from my rural Tennessee upbringing—and equally far from Darwin. In her charming, intimate memoir about her father, the actress Jennifer Grant says that, after her birth when he was sixty-two, Cary Grant devoted many hours to his daughter’s daily adventures. Perhaps in part because his own childhood mementos and documents were destroyed during World War One, Grant ensured that Jennifer’s drawings, notes, and other memorabilia could not be lost: He installed a bank-quality vault to preserve them and left her a trove of memories, especially home movies. An actor, Grant naturally turned to movies to record his child’s life. A writer, I turn to words.
• • •
Can you tell that my father died when I was young and I am still looking for parenting examples?
• • •
The author’s son Vance, age nine, in background
Some of my journal entries are over a thousand words, some only a sentence fragment. On one day in early 2013, when V was about a week old, I wrote, “When I’m holding Vance in my arms at 1 a.m., & he’s peering up at me & glancing around the room, & squeezing my thumb in his toy fingers, & aiming those giant blue eyes up at me & smiling, & leaning his cheek into my palm, I can feel that my psyche is rewiring itself. Nature is repurposing me.”
Nowadays I preach to friends about recording insignificant moments, not just noting milestones. Joseph Campbell argued that if you see a path already in front of you, it must be someone else’s. I feel the same way about categories in memory books. If the category already exists, how could it preserve a unique moment?
Entries begin as scribbles on Post-It notes or the blank index cards I use as bookmarks—even on the endpapers of a book I am reading. I’m glad I noted somewhere that once, after carrying a branch through the woods for a long time, Vance put it down, squatted beside it, and said something to it that I could not discern. Then he jumped up, dashed along beside me, and turned to call back, “Bye-bye, branch!”
Joseph Campbell argued that if you see a path already in front of you, it must be someone else’s. I feel the same way about categories in memory books. If the category already exists, how could it preserve a unique moment?
I wrote this note because, when Vance was diagnosed with autism, worst-case scenarios with which experts fueled my fears included that he might not develop imagination and empathy. It has not turned out that way, thanks in part to luck, to a million non-constricting hugs and endless narration of life, and to a parade of attentive teachers and therapists (occupational, speech, physical, and special-needs). Finally, I caught on that autism had not removed Vance’s urge to communicate. It had merely encoded both outgoing and incoming messages. So we needed the most accurate translation system we could come up with. Everything seemed to move more quickly when we were touching, for example. He never stopped wanting to hold hands, to sit close, and so on. He is still awkward about hugging, and almost never initiates it himself. But he wants to touch. He likes silent reassurance.
Vance was fated to be bookish. I have a note about the day when he and I were walking hand-in-hand in a meadow and he said, “Astronauts flew on the Lunar Lander,” and stopped walking. I looked at him. He was gazing up at the white moon that I had not noticed overhead. “It’s a crescent,” he whispered. He was two and filing away more of what I was reading to him than I realized.
• • •
My changed journaling style reminds me that Vance has influenced me at least as much as I have influenced him. I reined him in from walking off a curb and into traffic. His alien strangeness, and the weight of responsibility I felt when he was born, led me to pay attention to him, as I never had to anyone else.
I have never thought, as my mother claimed a distant relative used to say, that “People ain’t worth the powder it’d take to blow ‘em to hell.” I have always had close friends I love and admire. I had always thought of myself as progressive and concerned about my fellow human beings and our shared future; I’ve signed petitions, attended marches in Washington and elsewhere, written for newsletters, occasionally called a legislator. But I shied away from a great deal of human society because its issues and loyalty made no sense to me, and because the sick desire of so many people to dominate the lives of others left me hopeless. Finally, I realized that a distant despair was useless for others and myself but also a form of, well, privilege. “I can’t afford despair,” a Black female activist once told me. White and male, I guess I grew up thinking that I could. When I read Walden around the age of twenty, I saw it not as a call to action but as permission to step off the merry-go-round. I did not want to lead a life of quiet desperation. I wanted a life of quiet joy. I wanted to live around the edges, like a deer in a suburban alley, or a squirrel leaping from tree to tree without touching the parking lot below.
But now, as the father of a ten-year-old, I find myself talking constantly with teachers and therapists, joining autism groups, attending school board meetings, speaking out against the censorship of school library books. I taught Vance to hold a fork; he taught me how to stay connected with the rest of humanity.
• • •
For his first few years, V exhibited no interest in TV shows or movies. He watched only nature programs. He especially loved an old video we found on YouTube about how spinner dolphins congregate in the protected harbors of the island of Fernando de Noronha off the eastern coast of Brazil, and one about zebras migrating across the “thirstlands” of the Makgadikgadi Pan in Botswana.
His first movie romance was with The Lion King, and then he fell for its half-hour Disney TV sequel, The Lion Guard. For two or three years, we heard constantly about Simba’s and Nala’s son Kion, and his team of Pridelands protectors, which includes an unlikely coalition between a cheetah and a honey badger to rescue ditzy zebras. Soon I found V looking up hyenas and galagoes. He adopted my terminology: realistic versus cartoonish. “I like animal shows,” he said once. “I like— Like— I think I like movies about animals, about animal characters.”
Once in the car Vance returned to this theme by remarking out of the blue, “There are real animals on The Lion Guard. There are lions and cheetahs and a honey badger is a real animal.”
“Yes. I like how they base some things in the characters’ lives on how those real animals live.”
“Binturong!” he exclaimed.
“Oh, you mean how the binturong turns out to be a real animal?”
“Mama Binturong is a real animal,” he said. Then he corrected himself: “Binturongs are real animals, and Mama Binturong is a character.”
“You’ve really been thinking about this.”
“I learned,” he said, and paused. “I learned about—Mama Binturong was on—on the Lion Guard Wiki Fandom. On the Internet.”
A nonfiction writer and an unbridled indulger in the lustful sin of curiosity, I was thrilled that Vance’s passion for The Lion Guard had led to actual research.
We rambled along the curving, hilly backroads of western Pennsylvania, heading toward a favorite woodland spot. “I love the light on that hillside,” I said—the kind of remark I had made a thousand times. I lowered the window. “Hear that? Two red-tailed hawks calling to each other.”
“I like the Lion Guard Wiki Fandom,” he said. I thought he was returning to his theme, but he was going in a new direction. “I like—The animals are—I like red-tailed hawks,” he said, as if using my mention of them as an example of his point. “Hawks. I want. I think. I like the Lion Guard Wiki Fandom. It tells me—I learn stuff about—stuff about animals.”
“Do you mean about the characters?”
“About the real animals,” he said with a kind of urgency. “There’s. There is a—There are pretend animals.”
“Yes.”
“Story animals. But real animals—Real animals are not story animals, but they can be, but they are not.”
I was thrilled to hear him articulating so many thoughts and showing that he was learning about, as his third-grade class was discussing, fiction versus nonfiction. “I like our own real animals too,” I said finally, aware that I too was returning to a favorite theme. “I like—well, squirrels and starlings and those red-tailed hawks.”
“Woodpeckers!” he exclaimed, encouraging me now.
“Yes. Isn’t that a wild way to make a living, banging your head against a tree trunk?”
“Your beak,” he corrected me.
“Yes. With your whole head attached.”
“I want—I like to—I want to make,” and in sudden excitement he ended by exclaiming, “I want to make a Real World Wiki Fandom.”
I drove for another mile or two before I realized that my cheeks were tired from broadly smiling. “That’s a wonderful idea. I think all my life I have been basically writing little entries in a Real World Wiki Fandom.”
“I like the real world too,” he said simply, as I parked outside the nature center.
I parked the car thinking about how challenging it is to try to accept the real world. I kept trying to get rid of my resentment about the cards that Vance (and thus his caregivers) had been dealt. As he unbuckled his seatbelt and climbed out of the car, he muttered, “Mama Binturong,” and then echoed the last syllables: “Turong.”
• • •
The author with his son, Vance. (Courtesy of Mae Reale)
In the months following V’s diagnosis, I was slow to realize, then slow to admit, how much his behavior resembled my own life, both as a child and ever since. Everything I heard and read was a revelation. I recall asking aloud, “How could I have reached my fifties without learning a thing about autism?”
The more I learned about Vance’s version thereof, the more I saw myself differently. I did not yet know that autism runs in families. “Why do you have to always be so weird?” my unstable fundamentalist mother would demand about the comic book I was reading or the chipmunk-gnawed acorn in my pocket or the toy Norwegian elkhound that I had bought for my growing collection of plastic dogs that seemed the right size to accompany G. I. Joe and Johnny West on their adventures.
The more I learned about Vance’s version thereof, the more I saw myself differently.
But I was weird—different. I spent a lot of time by myself, reading and playing in the woods and drawing animals. I liked and felt comfortable around girls, so there was that, but I did not understand the rules or migratory loyalty of sports. I knew the names of dinosaurs and writers. Instead of baseball cards, I asked for a pack of authors cards I saw at a Ben Franklin dime store. During a game, the white male canon looked like a nerdy version of Hollywood Squares, as if I might find Paul Lynde smirking between Hawthorne and Scott. Oh, the rival beards of Tennyson and Dickens—and lonely Louisa May Alcott among all those hairy men.
It occurs to me that I just did what Vance does. If something reminds him of a favorite topic, he begins free-associating about it.
As Vance seems to do, I walked through the world with my head buzzing with the words coming at me from every direction because I had no filters that could channel or slow down the Babel. I was raised in a family so backwoods that in first grade I lost a spelling quiz because when asked to spell nothing I reached phonetically for what I heard every day and said, “Nothin’. N-O-T-H-E-N. Nothin’.” I was already reading, but fortunately in second grade I also began listening.
Thus, I understand the way that words cavort in Vance’s mind. They misbehave, resist narrowing to a single definition. They run away to play on their own. He tastes words, even chews them. Certainly, I did not teach him this tactile response to language, but it resembles my own. As a child marooned in shoreless Tennessee, I found nothing more sensuous to pronounce than the glamorous word seashore: the approach and retreat of a sighing tide. It was the first word I remember tasting, probably reading it aloud from a Scholastic paperback. Once a tiny orange-flavored children’s aspirin spoke the letter L on my tongue, and I felt even then that the name for a tree in our front yard—mimosa—pursed my lips like a kiss. I forgot some of these tastes for decades, until I found myself saying the word seashore around a mouthful of salt water in the Bahamas. About the same time, a magazine asked me to accompany archaeologists on a survey of Mammoth Cave in Kentucky. During long hours underground, I became aware of a pollen-like grit snowing down from the cave’s earth sky. As a result, when I repeated the archaeologists’ words such as karst and chert, they left a literal aftertaste in my mouth. I thought of how the wind in panhandle Texas once brought the taste of the arid Caprock Escarpment to my dry lips. Unfortunately, the wind did not whisper its name in my ear when a couple of years later I went up in a hot-air balloon over Tennessee. I had forgotten most of these memories until, at the age of six, Vance waded closer to me in Virginia surf to report, “Ocean says, ‘Isssshhhhhh.’”
• • •
My favorite example of how he and I seem to mirror each other, and how sometimes I glimpse my primordial childhood self playing with Vance and his father, occurred in 2015. Vance was two and I was fifty-seven. On this sunny and warm afternoon I drove him to a favorite park where, fenced in downhill, dog owners constantly bay the call of their breed: “Stop! No! Stop!” Uphill, surrounded by rolling Pennsylvania greenery, a playground boasts swings, ladders, and slides romping on a squishy pad to cushion tumbles. Pavilions shelter picnic tables. A skating arroyo tempts older kids to study physics.
He tastes words, even chews them. Certainly, I did not teach him this tactile response to language, but it resembles my own. As a child marooned in shoreless Tennessee, I found nothing more sensuous to pronounce than the glamorous word seashore: the approach and retreat of a sighing tide.
As we arrived Vance exclaimed, “Swing!” The park had only one of those small-kid bucket swings with a fixed plastic yoke that lifts up high and comes back down to fasten between the knees, caging the child like a Ferris wheel bar. A handsome Indian boy in a crimson shirt above pants as black as his hair had it first. On his turn, I held Vance above the bucket seat and, as efficiently as a seasoned pilot, he poked his sneakers through the leg holes without looking. He settled, grasped the metal triangles that hung the bucket from the chains, and announced—without a pronoun, as usual back then—“Want to go high!”
So I pushed him high, getting started behind him, then stepping around so we could laugh and talk face-to-face. He liked for me to push his feet and his hands and his knees at various times.
“Swing!” he said earnestly.
“Yes, you’re doing a great job.”
Clearly I had misunderstood. “Swing!” he demanded now with urgency.
“You want to swing higher?”
His face crumpled out of the frustration of trying to communicate with a dimwit. “Daddy swing!”
“Oh. Okay. Sure.”
So, I sat down in the regular flat swing beside him, which was too low for my long legs, and leaned back to its limit until Vance’s swing returned to that position again. Then I lifted my feet and swung beside him for a long time, hopping out only long enough to get him going again.
He laughed in delight and watched my feet and then his, and my hands and then his.
Watching him, laughing with him, for a moment I could not tell whether I was myself grasping the chain on my swing or Vance grasping the chain on his. Our hands were in similar postures, our mouths grinning and laughing together. I have had moments like this all my life. Three years earlier, I had the same sensation during my eighty-five-year-old mother’s last days, when we were holding hands while she lay in a hospital stroke wing. Our gestures and expressions mirrored and I lost track momentarily of which one I was, and I thought I felt her inarticulate pain. When I lay down at night, I kept imagining that I was Mom in the nursing home, unable to speak, facing the last door to be opened.
And for a moment with Vance on that playground, I was the man, and before that the boy, who had been swinging on swings in playgrounds for more than half a century, but I was only two years old, and five, and nine. My body remembered everything about the motion. My eyes knew the upswing and the downswing, the blurring approach and retreat of the playground in front of us and the setting sun beyond.
Watching him, laughing with him, for a moment I could not tell whether I was myself grasping the chain on my swing or Vance grasping the chain on his. Our hands were in similar postures, our mouths grinning and laughing together. I have had moments like this all my life.
“Daddy is swinging!” Vance exclaimed, or perhaps I did, and I laughed, or perhaps he did.
I watched him, his hair flying, his cheeks bunched by the grin. All signs of baby were gone. He was all boy by then, his chin sculpted by hormones, his cheekbones more visible, his neck long and narrow by comparison with only a couple of months earlier.
Time seemed to be flying like the swing—except in only one direction. How could I feel like a child when my own childhood was an impossible five decades behind me? The first Vance had been dead for more than fifty years when his namesake was born. Half a century! All of the second Vance’s life meandered ahead of him like a country road, but for a moment all I saw were potential horrors: boiling oceans, hurricanes, famine, Mad Max wars in deserts, white supremacists attacking more than just the Capitol. I was stabbed with dread and I thought for the hundredth time, It was unfair to bring a child into this world, which has been true of so many eras, perhaps all.
But at the same time, he seemed so happy, and I felt as good about life in that moment as I ever had: cautiously optimistic, my highest setting, but glad to be alive and playing with someone I love. I had never been responsible for anyone before. I felt the weight of it as, to my surprise, an almost unbearable tenderness in response to his innocence and vulnerability. It felt too big to be about only two people. I remember glancing around at the other kids on the playground and thinking, How can I love this child so much without loving other kids too? He and I are not special. I almost forgot this moment until a couple of years later, when Trump’s jackboot minions began stealing children from desperate immigrant parents and caging them at the Mexican border. I could not see one of those girls and boys sobbing without seeing Vance in a cage, and I realized that this was the only responsible way to deal with injustice: keep it real and keep it personal. Another gift from Vance: a demand for broader connection. Despite all the difficulties it caused, rather than separating us his autism had drawn us closer together, had helped me see myself more clearly.
When I first started taking him to playgrounds, in the swing his legs were so short they stuck straight out, his tiny shoes looking one step above doll-size. But on that day, when he asked me to stop the swing, he slid forward in it and laughed in sudden delight.
I looked to see why.
The toes of his sneakers were touching the ground. Vance was smiling down at them, thrilled with the power of growing.
