by Anne Cushman
A few weeks later, we were sitting on the couch together, reading his current favorite bedtime story, Will You Be My Friend? It’s a sweet story about a bunny and a bird who live in an old apple tree. The first time we’d read it, he had burst into tears in the middle, when the rain blew in and ruined Bird’s nest. “What will she do?” he wailed, his face crumpling. But now that he knew it had a happy ending, he wanted to hear it over and over.
This time, when we finished, he said, “I wish I could live in an apple tree. Maybe I could die and turn into a bird!”
“Maybe you could just pretend to be a bird,” I said, trying to steer the conversation away from death. But he wouldn’t be deflected.
“Sometimes,” he said, looking worried, “they take your body and burn you up. They don’t even let you turn into something else.”
“Who told you that?” I asked.
“Mary.” Mary was his beloved babysitter, a Buddhist vegan belly dancer with a silver ring in her nose and deer tracks tattooed on her calf, who had taught him to bake bread, grow tomatoes, sing folk songs, and identify wildflowers. Mary is passionately devoted to the Whole Truth: She also told him, apparently, that eventually the sun would explode and burn up the planet Earth. (“But we don’t have to worry,” he reassured me. “It won’t happen for a long time, until all the people on Earth have died out.”)
“Well,” I said now, “even if they burn your body, you still keep changing into something else. The ashes will change to something else. Remember the fireplace ashes we put in your garden? They’ll be lettuce this summer.”
He nodded. “So even if they burn me up, I’ll still turn into animal, or maybe another boy, or something.”
He sat for a while, obviously puzzling something out. “So…” he said. “Before I was a boy…before I was even a seed inside you…was I something else? Like an animal? Or another boy? Or was I just a boy right from the beginning?”
Possible answers flashed through my mind: Before you were born, you were your father and mother, getting stoned to Brian Eno in a college dorm room twenty years ago and laughing till it hurt. You were your granny and granddad, dancing at an officers’ hop in Georgia in the middle of World War II. You were a baby girl named Sierra, who your mommy and daddy loved so much they had to make a new one right away. But before I could find any words, he went on.
“I think, probably, I was just a boy right from the beginning. That’s what I think,” he said. “That was a really good story. Is it time for bed yet, or do I have time to listen to ‘Steal My Kisses’ on iTunes?”
* * *
—
In early March, in the middle of the spring rains, Toni died.
When I told Forest, he looked worried but didn’t cry. “How do you know?” he asked.
“Her daughter called and told me.”
“But how do you really, really know for sure?”
I suggested to Forest that we could light a candle and some incense, and send love to Toni. He looked at me as if I was losing my marbles. “Mommy,” he explained patiently, “Toni’s dead.”
“But we can still send love to her spirit,” I said. “That’s the part of her that lives in our hearts and will never die.”
He nodded. “That’s the part of her that will turn into something else,” he said.
At school, each of the children had a different theory about where Toni had gone. Max said she had turned into a giraffe. Lulu said she was a star. Colin insisted that she had gone back to France.
Toni’s husband was making a garden in their front yard, where he would scatter her ashes under a Japanese maple. The children would plant sunflowers and daffodils there.
It was spring, and the wild irises were blooming, just as they were six years ago when Sierra died. The baby quail were marching through our yard again, and the cat was stalking them. I couldn’t give Forest any real answers about where Toni went. But I hoped he would always see her in the red maple leaves and the golden faces of the sunflowers. And I hoped that as he grew up in a world where nothing he loved could be held on to forever, that this way of seeing would be of some comfort to him.
SUTRA 8
On the Spectrum
• • • • •
THIS IS THE story about a diagnosis: Your child’s brain isn’t normal.
It’s a story I didn’t tell for many years because I was afraid that speaking it publicly would solidify it into truth. I could only tell it afterward, when the diagnosis—which seemed like a mountain—had turned into mist.
An old Chinese fable tells of a farmer whose horse runs away. When the neighbors commiserate, he simply says, “Bad luck? Good luck? Who knows?”
The farmer says the same thing when his stallion returns with a mare and a foal. And again, when his son is thrown while training the new colt and breaks a leg. And again, when the broken leg prevents his son from being drafted to fight a war.
Bad luck? Good luck? Who knows?
* * *
—
“I’m very concerned about Forest.” My sister-in-law, a child psychologist, had pulled me over to a corner of the screened porch of our beach house.
Forest had just turned three, and we were finishing a weeklong family reunion on Sullivan’s Island, just off the coast of Charleston. Every year, the whole Cushman clan chipped in to rent a few houses for our ever-growing tribe—which by then consisted of my parents, their seven children, their eighteen grandchildren, their two great-grandchildren, and an array of spouses and partners. The island had wide beaches with soft, fine sand; bathtub-warm waves where we spotted porpoises diving at dawn and swam in phosphorescence under the full moon.
But Forest wasn’t particularly interested in splashing in the waves. Nor was he a fan of building sandcastles or digging moats. He preferred to carry a bottle of red Tylenol around the living room, or stare at the whirling ceiling fan trying to analyze the flicker of the blades, or sit in the sink turning the water on and off, on and off, over and over again. He had gradually stopped referring to himself as “you,” but now he referred to everyone in the third person, including himself: “Mommy won’t pat Forest on the head! It irritates him!”
“He’s exhibiting rigid, repetitive behaviors,” my sister-in-law continued, as we sat down on chairs gritty with sand, next to the abandoned bucket and shovel in which Forest had shown little interest. “He’s ultra-sensitive to sounds and touch. And the way he scrambles his pronouns—that’s very, very alarming. If that doesn’t stop soon, I’d be very concerned.”
I stared at her blankly. Repetitive behaviors, sensitive to sounds, idiosyncratic speech—wasn’t that just normal toddler behavior? I didn’t have anything to compare him to. “Concerned about what?”
“When you get home, take him in for observation and testing. I’ll send you the name of a facility I’ve collaborated with in San Francisco. If they can’t get you in, they’ll be able to recommend someone.”
“But—what would they be looking for? What do you think is wrong with him?”
She looked at me sadly. “I don’t want to diagnose anything without testing. Oh, Anne—as a mother, and as a sister, my heart goes out to you.”
* * *
—
Here’s a strange thing, or maybe it’s not so strange: When I go back, years later, and look at my journals from that time, I find almost nothing about the diagnosis. I just find stories of moments as they unfolded:
The other day Forest asked me, “Mommy? Do rocks have skin?”
“No.”
“Why do rocks not have skin?”
“Well, because they’re not exactly alive. Not the same way you and I are alive.”
“Do they grow?”
“No, they don’t grow.”
“Why don’t they grow?”
“Um…because they don’t eat anything.”
�
�Why don’t they eat anything?” And then, as I’m pausing, trying to figure out why they don’t eat: “I know why! Because they don’t have mouths!”
Was I writing about a child who was brilliant, funny, adorable? Or a child who was weird, dysfunctional, doomed?
* * *
—
Two days after my conversation with my sister-in-law, I was back in California. At the end of a long day of travel home from the family reunion, it was almost midnight, and I was exhausted. After tucking Forest into bed, I couldn’t wait until morning—I sat down at the computer and began to type phrases into Google. Head banging. Tantrums. Doesn’t play with toys. Doesn’t play with other children. Says “you” when means “I.”
A flood of entries came up, all headlined with the same word: Autism. Autism. Autism. Autism. Autism. And a new word I’d never heard before: Asperger’s syndrome.
Asperger’s, I read, is “on the autism spectrum.” It’s a neurological disorder characterized by a “triad of impairments affecting social interaction, communication, and imagination, accompanied by a narrow, rigid, repetitive pattern of activities.” People with Asperger’s could be relatively high-functioning. But clearly the world didn’t consider them “normal.”
I read down a list of characteristics, all of them eerily familiar: Not playing with toys. Lack of interest in other children. (Forest at age two, pointing at a boy at the playground while shrieking in horror, “What is dat?”) Unusual interests and repetitive behaviors. (“Do you want to smell the spices?”) Fear or distress due to unexpected sounds or noisy, crowded places. (Carrying Forest out of his cousin’s first birthday party as he shrieked in outrage and pain, after the kids began blowing on the noisemakers that were passed out as party favors.)
Even the things his dad and I bragged about to each other—his prodigious memory, his advanced vocabulary, his preference for conversing about wildflowers with adults at the playground rather than playing on the slide with other toddlers—all, apparently, were evidence of a crippling and incurable neurological disorder.
According to what I was reading, my child would never have friends the way “neurotypical” children would. He would not feel love or empathy or compassion. In social situations he would always be on the outside looking in—a robot in a litter of puppies.
And not only that—this was a genetic condition, which meant that it must be our fault. One of the theories floating around the Internet was that the increase in Asperger’s and autism resulted from inbreeding fostered in elite universities and Silicon Valley tech culture: geeks marrying other geeks, producing dysfunctional super-geek spawn.
I had grown up as a “weird kid” and a bookworm. While other seventh-grade girls were putting on lip gloss and talking about boys, I was still galloping around the playground whinnying and jumping over bike racks, pretending to be the Black Stallion. I had married—and was now divorcing—an eccentric genius who had been kicked out of Princeton twice before graduating, and who had always been allergic to conventions such as a nine-to-five job. Apparently, we had crossbred our quirks.
I turned off the computer and dropped my forehead to the edge of my desk. In the past few years I’d survived the death of a baby, the collapse of a marriage, and now—my beloved son would have no friends?
* * *
—
Forest yesterday morning, after blowing his nose: “Mommy? Why is it that sometimes snot is a liquid and sometimes snot is a solid?”
* * *
—
The evening after my Google marathon, after Forest went to bed, I sat on the couch in my living room with Forest’s dad. We were living separately now, on our way to a divorce, but I knew there was no one else in the world who loved Forest as much as I did.
I expected him to freak out when I told him what was going on. Instead, he looked thoughtful but not worried. “Well, we’ve always known that Forest is special. He’s wired a little differently than other kids. I don’t know that that’s a bad thing.”
“They say that the way he reverses pronouns is one of the signs of the disorder. He might never speak normally.”
“We’ll just explain it to him,” he says confidently. “We’ve never really tried.”
“They say he won’t have friends. They say he won’t know how to connect or exhibit empathy.”
He shakes his head. “That just doesn’t sound like the Forest I know.”
“But what if—”
“Anne. We have to have faith in Forest,” he said. “I have faith. No matter how far he goes inside a dark cave, I have faith that we’ll be able to go in there and make contact with him.”
* * *
—
Yesterday Forest was eating a big bowl of peas and ravioli. When he was done he looked at the empty bowl, somewhat wistfully, and asked, “Do peas and ravioli have a past tense?”
Does love have a past tense? Does marriage have a past tense? Does meditation have a past tense?
* * *
—
I arranged a consultation with a child psychologist. While we were waiting for our first appointment, I enrolled Forest at a cheerful, bustling preschool. I thought its focus on hands-on learning combined with a touch of academics would be a good fit—unlike the Waldorf school we visited, where Forest regarded the wooden toys and silky scarves with utter disinterest, like a college professor in a sandbox.
I watched as Forest bravely waved goodbye and took his seat in a little chair he pulled up just outside the “sharing circle” of twenty-six other children sitting cross-legged on the carpet. When I picked him up a few hours later, he was still sitting in the same chair, while the other children jostled for space around long, low tables covered with finger paints, crayons, and wooden blocks. “He didn’t seem to be that interested in the materials,” the teacher told me. “He didn’t want to paint or draw. But he was very good! No trouble at all!”
“You did a good job at school,” he informed me as I drove him home.
“Yes, you did!” I said. “And Forest says, ‘I did a good job at school.’ ”
“I did a good job at school.”
When I took him back the next day, though, he burst into tears. It turned out that he had thought that “going to school” was a onetime thing. He was devastated to learn that he was going to have to go every day (let alone another twelve or sixteen or twenty years).
Every day that week, I dropped him off and waved goodbye. Every day, when I picked him up a few hours later, he was still sitting in the same chair.
Early in the second week of school, I took him to the appointment with the child psychologist. She was a warm woman in her midforties, with short hair, enormous brown eyes, and a bright sunny office full of toys. I left him with her for a couple of hours of testing. A few days later, she went to his school and watched him for a morning.
“He’s not a disciplinary issue,” she told Forest’s dad and me when we met with her to go over her conclusions. “And I don’t think he’s autistic. But I do think that he has Asperger’s syndrome. He has a very sweet personality, which makes it easier. But I’m not going to sugarcoat it. He has a hard life ahead of him.”
“Is there anything we can do?” I asked.
“There is no cure for Asperger’s. But there are things you can do to handle the symptoms. I recommend you get a play therapist and enroll him in social skills training.” She scribbled a phone number and name on a piece of paper and handed it to me. “I also recommend that you switch him to a smaller, quieter school where he can get more personal attention.”
As we walked out the door, she called after us, “Good luck!”
* * *
—
Yesterday, the “play therapist” was here to coach Luca and Forest while I chat with Luca’s mom, Lisa. Forest greets Luca enthusiastically, wants to play “chase” (the only game he knows). He chases Luca
and accidentally knocks him down, Luca’s stocking feet skidding out from under him on the hardwood living room floor. Luca wails and runs to Lisa, who keeps telling him, “It was an accident,” while Forest asks me over and over, “Is he crying or laughing? Why does he not want to play chase anymore?”
* * *
—
“This,” said the play therapist cheerfully, placing a plastic disk the size of a drink coaster on the coffee table in my living room, “is spaghetti!”
Forest, age three and a half, leaned over and examined the therapist’s offering—a plastic disk about the size of his hand, molded in the shape of a pile of noodles, with a smear of red on top. “Why is that spaghetti?”
“It’s pretend spaghetti,” the play therapist explained. “Just like this”—she gestured at the green plastic sprig next to it—“is pretend broccoli. And this is a pretend banana. Do you want to have dinner?” She picked up the plastic banana and held it to her mouth. “Yum, yum! Do you want to try it?”
Forest looked at her as if she had lost her marbles. He picked up the broccoli and held it to his cheek. “Yum, yum,” he repeated obligingly. His face was saying, “This is a weird, weird world. But if you want me to act as if these little bits of plastic are edible, I’ll try to do it.”
The therapist had begun coming to our house once a week for play coaching sessions. By that time, I’d transferred Forest to Peaceable Kingdom, Toni’s tiny, orderly Montessori preschool in her downstairs living room. (I got the feeling that Toni was used to teaching “social skills” to American kids—she simply called it “manners.”)
Forest’s dad and I had made a decision: We were not going to use the term Asperger’s syndrome to define our child, or even to describe him—not with him, not with each other, not with our friends, not even with his teachers. We would just look at the specifics of his challenges and gifts, and work with them.
