It is October and hot, midway through the slow bleed of summer’s end in North Carolina. We park the car in a strip mall. My husband takes our two sons to browse a temporary Halloween shop. I go into the adjoining Harris Teeter grocery store and drop off a prescription for Abilify, an antipsychotic, at the pharmacy.
I wait in front of a shelf of Pepto-Bismol and its lookalikes. We’ve decided to tell our older son that Dr. S. has given us all new vitamins. His is clear, and Dad’s, mine, and his younger brother’s are pink, and they all taste terrible! My armpits grow slippery; I fear that the smell of my body is insulting the metallic purity of the store. Everything is lined up perfectly and clearly labeled. It is a very neat place in which to be a failure.
The pharmacist scans the bar code of the package, and I wonder if she plays a game with herself during these afternoons, deciding how well prescriptions match the people picking them up. She has never seen my child, but she knows his date of birth—that he has just turned five years old and will be taking a powerful psychiatric drug. She looks at me, but I do not look back.
Four weeks later, I need to buy a pregnancy test. I don’t go to the Harris Teeter for it. I do not want the pharmacist to look at me again, to politely not say what we would both be thinking, which is that I am clearly not a person who should have another child.
It began when sperm and egg met, and there was a skip in the bind and the weave got a pull, one piece of one thread not tight enough. Or it began in the genetic code of sperm and egg themselves, some pus pocket of wrong along a chain of right. Risk genes, they’re called. Or it began when my son tried to squeeze his bones through mine, and his heart rate dropped to the 50s. It had already been down five minutes when the nurse came and got me, the doctor wrote in the medical record. Or maybe it never began. Maybe there is no it. Maybe I am delusional or a liar. Maybe I am simply a Bad Parent or my son a Bad Kid.
He is our first baby. He is born, and we spend two days in the hospital gazing at him. We bring our son home to our duplex in Nashville, Tennessee. We lay him on a blanket on our bed and pull him around on it as if it’s a sled. My husband props him up on his knees and reads to him from old college French texts. I lose all of the baby weight in weeks—not because of breastfeeding, I don’t think, but because I don’t feel the need to eat. Elation, it turns out, is caloric.
Our son doesn’t feel the need to sleep. Or, he does, but not like any newborn I’ve ever been around. Instead of dozing off and on all day, our son sleeps for an hour or two and then is alert for long stretches. By four, five, or six straight hours awake, he grunts and flails his arms as if he’s a puppet. I know babies can be hungry, tired, uncomfortable; can they also be agitated—restless—so early?
One night, when he’s been awake for hours and rocking, pacing, and driving in the car will not put him to sleep, my husband and I call the baby hotline at the hospital. “Try the dryer,” the nurse says. “Put him in his car seat next to the washer and dryer, and run both of them at the same time.”
My husband and I do as she says. We sit on the floor across from the baby and wait. My husband falls asleep, and, terrified, I want to wake him. Please don’t leave me alone with this need I cannot meet, cannot place! My son looks at me, his eyes red-rimmed, arms pumping, as the floor vibrates under him. He is five days old.
For years, I feel his needs in my body without having words for them, like a consciousness that has not yet evolved to meaning-making. I develop a layer of vigilance without thought; it is simply what is required of me.
Much later, I will realize how well-suited I am to this situation, building structures to cope and adapting them to something uncaged and ever-changing. Raised in an alcoholic family, I knew at a young age there was something in my home that demanded I plan around it. I learned how both to protect and survive it without knowing that it was something separate from normal, that it had a name.
This is like that. But for a long time, I assume it is just part of being a mother, in the way I assumed it was just part of being a child.
In ADHD Nation, journalist Alan Schwarz explores the legitimacy of the explosion of ADHD diagnoses in America over the past three decades. Experts believe the condition affects about 5 percent of children, yet today, 15 percent of American children are diagnosed with ADHD. One reason for this, Schwarz explains, is that ADHD cannot be diagnosed with a blood test or CAT scan; instead, a doctor must determine “whether the severity of the behavior warrants a diagnosis. After all, we all are distractible or impulsive to varying degrees.” Dr. Russell Barkley, author of Taking Charge of ADHD and one of the leading authorities on the science of ADHD, corroborates this, asserting that “ADHD represents the extreme end of the distribution of several highly correlated normal traits in the human population.”
Over the years, the rapidly increasing number of ADHD diagnoses dilutes the seriousness of the disorder. As Schwarz writes, it becomes “to some, literally laughable,” eliciting jokes by The Simpsons, The Colbert Report, and The Onion. If there was a stigma associated with ADHD, it “didn’t prove very dissuasive. . . . Today, one in seven kids leave high school having been told they have ADHD—no longer a niche minority but a sprawling swath of America’s future.” Schwarz devotes his book to telling the story of how “ADHD has become, by far, the most misdiagnosed condition in American medicine.”
Outside the purview of ADHD Nation is the story of individuals who have the legitimate brain disorder. It is no easier to identify them than it is to find the misdiagnosed. Despite the fact we all possess its traits to some degree—that we are familiar with distractibility and impulsivity—we do not recognize ADHD as such when it is in our faces. And despite hearing jokes about it in popular culture, we find nothing funny about ADHD when we encounter it. When we are faced with the disorder in its early, severe form, it is as other as the melted flesh of a burn victim.
Our son is three years old, bright and exuberant. He takes gymnastics and has a knack for rhyming words. His tufts of baby hair have grown into a cap of white-blond curls, so perfectly wound they look like a wig. We call it his Betty White Period.
Our son is three years old, and we know something is not right—that it hasn’t been for a long time—but everyone around us says this is not true. He never outgrows his severe sleep issues; throughout his infancy, it took us hours to get him to sleep at night, and at age three, he often wakes for the day at 4 am and cannot go back to sleep.
“My daughter did that,” people say. “We just ignored her, and she got the message.”
He could not be busied with toys as a baby. Now, he cannot settle into any activity on his own, and he can’t seem to handle any material appropriately. He will use all of the paint, whole tubes of it, in two minutes. I tell my mother it seems as though nothing can satisfy him, that there is some need in him that cannot be stuffed up.
“You know boys,” people say. “You’ve got to keep them moving!”
He has begun to be highly resistant to the bathtub. He screams when we lead him there—not a tantrum scream, but one of gut terror. My husband and I have each shed involuntary, instinctual tears while wiping him gently with a washcloth as he wails. He lies on the couch in his footie pajamas afterward, curled up in a tight ball like a just-beaten animal.
“It’s just a phase,” people say.
And then, the most troubling thing: our second son is born, and our older son cannot seem to keep his hands off of him. It begins as squeezing the baby too tightly when holding him. We have to pry his hands off his brother, or he won’t let go. Over time, it worsens. He will enter the room and seem to be drawn to the baby by magnetic force. He tries to lay on top of him or press down on his chest, palpating his heart like an EMT. He seems to understand when we model appropriate touch, and he seems ashamed when we put him in time out, but five minutes later, he will do it again. It seems to me he is seeking sensation, that too-close touch, rather than acting out for attention.
“It’s definitely attention,” people say. “He’s just jealous. They all go through it.”
The problem with describing the depth of a child’s struggle is one of ownership. Nearly everyone’s child is difficult sometimes.
You think that’s your special story? people wonder. You should meet my niece/neighbor/cousin/brother.
After a while, I find it easier to stay quiet.
In one of the ADHD fact sheets on his website, Dr. Barkley discusses cases of children who do not present “the exact number of symptoms or age of onset demanded by the DSM,” but who are still highly symptomatic. In his opinion, Barkley writes, “children should still receive treatment even if ‘subthreshold’ in their symptoms, because they are impaired (suffering) and it is impairment that we exist to treat.”
I am struck by the parenthetical suffering—the need to explain to the reader that when we talk about symptoms of this disorder, we are talking about suffering. There would be no need for parentheses were we talking about leukemia or Tay-Sachs; none of us needs to be told the word for what happens when a child is courted by death, his body ravaged. Barkley chooses to be explicit because we think we already have a word for a child whose behavior, not body, is distorted: bad.
By the time he is three and a half, people stop telling us it’s normal. My son has trouble at his first preschool; he can’t sit for snack and makes silly, unwelcome sounds close to the other children’s faces. At the park, he is no longer satisfied by going down the tunnel slide and instead scales the outside of it, yelling, “Boo!” at the children waiting atop. I begin to get narrowed eyes and pursed lips from other parents. “Stay away from that kid,” a mother says, yanking her child away as mine runs off, making no effort to lower her voice. She wants me to hear that this is my son’s fault and my fault, our shared failure.
The first psychologist we see is a woman with decades of experience working with very young children. She has a soft voice and a pillowy, grandmother’s body. She tries to entice our son into therapy by noisily playing with toys like a large, gray-haired toddler. When he won’t take the bait and join her, she comes to our home to watch the bizarre nightmare that has become our reality: our older son buzzing around and intermittently attacking the baby.
After the home visit, she calls me. “I want you to know I am very conservative when it comes to these things, but I think you should take him to see a psychiatrist and consider a trial of a stimulant.” Fear prickles over the slopes of my body, knees up to ears. Did she just suggest putting our three-year-old on medication?
She emails me the diagnostic criteria for ADHD. Inattention, impulsivity, hyperactivity. Unable to play quietly, doesn’t follow through on instructions, does not seem to listen, often runs about or climbs where it is inappropriate. But what three-year-old doesn’t display each of these symptoms at times?
There isn’t a whiff of what ADHD feels like, or what it’s like to live with, in those bullet-points. It’s not the fault of the bullet-points or the doctors who worked to delineate them, but the diagnostic cannot reflect our exhaustion, pain, confusion, and helplessness. To be physically ill is to hold within you a range of medical terminology; to be mentally ill is to hold within you a range of human experience. It does not articulate what I will come to think of, much later, as the defining impetus for medication: the realization that nothing else we’re doing is helping him, or us.
But I am not there yet. At this point, I am terrified by the thought. I look anew at the psychologist, cast her now as the old witch in a fairy tale, holding out a potion to my son: Drink up, dearie! I take him and run.
For nearly two years, we avoid giving our son drugs to make him better suited to the world and instead outfit the world to better suit him. It is a strange journey through paths of alternatives. I become acquainted with naturopaths, biochemical crusaders, and autism recoverees. This is not in keeping with my social leanings heretofore; I like Tylenol and Lysol and vaccines. But I’ll do anything.
We take our son to an occupational therapy clinic, where a therapist works to give him the sensory input he craves. She has him leap off a six-foot platform onto a giant pillow she calls “the crash pad.” She spins him fast in a cocoon-like swing suspended from the ceiling; though I would vomit from it, my son is calmed. We buy similar therapy equipment for our home, to give him something to do at all times. We hire a handyman to drill holes into our ceiling and install metal bolts. Our son hangs upside down from a double trapeze in the living room, like a bat unafraid of daylight.
We put our son on a gluten- and dairy-free diet, and we avoid food dyes as though they are rat poison. We try therapeutic horseback riding and therapeutic swimming. Finally, we drive two hours to a town on the coast—it feels like a pilgrimage—where there is a neurodevelopmental pediatrician known for her commitment to treating “the whole child.” Dr. S. works with sensory disorders, autism, and ADHD, and medication is never her first line of treatment. She spends two hours with us and sends us home with a list of neurological supplements with names like GABA and theanine. We buy them, grind them, whir them into smoothies.
All of this helps a little. None of it helps enough.
I hear a moving interview with the scholar John O’Donohue. I purchase his Eternal Echoes and read it, looking for wisdom, for someone to speak my experience. “Suffering,” he writes, “is raw, relentless otherness coming alive around you and inside you.”
Our son grows aware of his own differences. His occupational therapist teaches him the “engine” system, helping him identify when his engine is “low” or “high” and how to get it “just right.” She begins this when he is having trouble interacting with a particular child at preschool, who revs him up then settles back down himself while our son remains at full speed, unable to do the same. She tells me she talked to him about this, that she asked, “Does anyone else at preschool have a high engine sometimes?” and he’d replied, “No, everyone else is just right.”
Our neighbors do not like us. They’ve seen our son ram his bike into our mailbox, desperate for the impact. For years, they’ve watched him shimmy up our front yard trees, in his underwear, but he is five now, and their glares communicate that he is now too old for this. One afternoon, while my son is riding his bike in our driveway, the neighbors’ little girl rides her bike alongside him. My son asks if she can come play in our backyard. “Sure,” her babysitter says. “I’ll just text her mom to make sure it’s OK.” A few minutes later, she shakes her head, surprised. “She said, ‘No.’ That’s weird.” My son asks, “What about tomorrow?”
I try to be quiet and patient with him most of the time, but one day, something brittling in me finally snaps. Our older son stands on the couch and suddenly dives onto his little brother on the floor, body-slamming him with the entire force of his weight, and the mother instinct rises in me like a beast with bared teeth. As I pull our older son off, I could send him through the ceiling, the strength and rage I feel is so monstrous. I take him by the shoulders and shake him, screaming, “This has to stop! This has to stop!” He falls to the floor. Both of my sons look up at me, scared and sobbing.
Maybe you’re thinking, Just hit him, for God’s sake, but I knew early on that if we started, we would not stop. We’d beat him senseless, because though he knows what is OK and what is not, he cannot quell his urge for the latter.
Still, I can hold my hands down at my sides to keep from throttling him, but I cannot help the expression on my face. He understands he is not right, that it cannot be right to make his mother look animal—I know this as surely as I knew, when I heard his cry from down the hospital hallway, that he was mine.
That night, I find him asleep in his bed, with an umbrella open above his head. He had asked for it one night, trying to wind himself down. He keeps it in his room and pulls it out on harder nights. He is so bad at this, at finding a way to nestle into the world. I climb in next to him, under its spokes, and weep silently. The umbrella shields us but cannot hold us.
I call Dr. S. and say we cannot handle the aggression and explosiveness, that we cannot reach him. She sends in the prescription for Abilify.
In a five-year-old, Abilify is a bomb; it obliterates indiscriminately. The first morning, he falls asleep in the car on the way to preschool. “He worked on an art project for forty minutes,” his teacher whispers, her eyes wide, amazed.
At home, he doesn’t want to play outside. “I just want to rest,” he says, lying on the couch and looking up at the ceiling.
My parents visit. Our son sits on the floor for two hours, doing a puzzle. He speaks little, laughs less. He is a ghost of himself, but he is less frightening to me than everyone else’s reaction to him. “Is it so bad?” my parents ask. They are not monsters; they simply know how hard daily life is. “He’s so peaceful.”
In the end, I can’t do it, can’t say goodbye to him so as to live with this placid shell. We take him off the drug after ten days.
It’s at this time that I find out I am pregnant for the third time. It’s shocking, almost comically so, after previously needing heavy doses of fertility drugs to conceive. My husband and I sit in our living room, stunned, as though we’ve just received word of a death. Should we terminate? Is it irresponsible, immoral—cruel, even—to bring another person into this? We are not religious, but I’d been educated in Catholic schools, was the winner of the 1998 Diocese of Metuchen Respect Life essay contest. I believe in choice now, but I never expected to have to make one.
“What if it is another child who does not have this, another child from whose ease we can derive joy and fulfillment?” my husband asks. We consider an equation: 2 who do not struggle / 1 who does = less total pain than 1 who does not struggle / 1 who does. We weigh it: the fear, the pain, the hope, and bet on hope. Two flares thrown into darkness make more light than one.
I am six months pregnant when a five-year-old boy tells me what I have to hear. I am volunteering at a carnival event at my son’s preschool, helping to run the beanbag toss station. This boy takes a turn then asks whose mother I am. When I answer, he’s off to the races.
“He’s bad,” this child tells me. “Really, really bad. He’s the worst. He messes up everybody’s stuff. He knocks down our block towers all the time.”
This child, I know, is the son of two college professors. He’s been brought up by skilled lecturers. He wears collared shirts and sweaters, has an air of class about him. He knows how to get to the point.
“That’s why he doesn’t have any friends. Not even one. No one likes him. My mom says maybe he needs a friend. Maybe he doesn’t know better.”
The other parent at my station cuts him off, embarrassed for me. I go to the bathroom and cry on a low toilet meant for preschoolers, trying to think up comebacks to a five-year-old. Then I think that this story he has told me might be the only story, and it is a sad one. And maybe I have not yet done everything I can to make it less so.
I think of our son’s little face. For a long time, I’ve thought maybe I could protect the core of who he is by padding everything around him. I begin to understand that this mission has about the same chance of success as sending a teacup down a waterfall and expecting to see it bob up in the whitewater, intact.
I make an appointment with one of the heads of the ADHD clinic at Duke University.
On the second day that my five-and-a-half-year-old takes Dexedrine, a stimulant medication, he goes outside and comes back in twenty minutes later. He is flushed. “Look,” he says, taking my hand.
My son has used sidewalk chalk to write the alphabet in a multicolored circle on our driveway. He usually struggles to sit long enough to write his name. “You practiced the whole alphabet!” I say.
He tries for a small smile, but his teeth push his lips open, let the beam crack across his face. We have never championed schoolwork or set this achievement as an ideal. Yet somehow, deep within him, my son knows this is objectively good, in that same way we recognize beauty as young children before anyone has defined it for us. I can’t explain to him that this is not my goal—for him to fit into anyone’s or everyone’s standards of “right.” All I want for him is the chance to stay a person, rather than a problem.
Our third son is born one sweltering July morning. My husband leads our two older sons into the hospital room, their faces full of Christmas-morning hope. We place the baby in our oldest son’s lap. The stimulant calms him, keeping the motor that seemed to drive him for years at a low rumble, but we still watch nervously as he cradles the baby. When he lifts his chin up, there is hot pride on his face.
One of the tenets of Dr. Barkley’s theory of ADHD revolves around the concept of time. “The organization of the individual’s behavior both within and across time is one of the ultimate disabilities rendered by the disorder.” Kids with ADHD lack the capacity of other children “to sense and use time” to direct their behavior toward the future. The now, in short, is everything.
As I watch our oldest son hold our youngest, I take that on for myself, let that distortion fly free within me. I feel as if I grafted my son’s central nervous system over mine for years; wasn’t it possible for me to adopt some of its wiring? “When you stop resisting suffering, something else begins to happen,” O’Donohue writes. “You begin slowly to allow your suffering to follow its own logic. . . . There is in suffering some hidden shadowed light.” It feels as if ten years have passed in darkness, not two, but I can hold this moment in the hospital and let it take up just as much space, let time glow open. Somewhere in the brightness is a beginning.