Why I Put my Drug-Affected Daughter Back on Drugs

Why I Put my Drug-Affected Daughter Back on Drugs

8-year-oldgoesviralwithhard-rocktune

By Melissa Hart

“Stupid Mommy! I hate you! You’re an idiot!”

It’s 2:45, the end of the school day. I cower in a corridor like a kicked mutt surrounded by serene hemp-clad parents and their eight-year-olds. Patchouli oil emanates from their golden arms and legs. They bend their sunny open faces toward one another—faces that cloud and pinch at the sight of my second-grader.

She’s flushed and furious, sweaty curls standing on end. She smells of spilled tempura paint and noodle soup from her overturned Thermos on the floor. Her green dinosaur boots stamp a frenzied tarantella around me as she screams.

“You never do what I want. You’re the worst mother ever!”

Shame flames my cheeks. The other mamas in the hallway, the bearded longhaired papas, probably believe her. I’m Snow White’s Evil Queen, Rapunzel’s Mother Gothel. In short, I most surely suck.

I don’t meet the eyes around me, I don’t say a word. I turn, chin ratcheted at an ignoble angle, and walk out the door praying my child will follow. She does, still shrieking insults. Then, she kicks me.

My transgression? I’ve left the Honda in the garage on this sunny day and asked her to walk a half mile home with me.

*     *     *

“She needs medication if she’s going to stay at this school.”

My daughter’s principal, boyish and skinny as a weasel, sits in the counselor’s office across from the tranquil second-grade teacher and me, and delivers his verdict. “In the classroom,” he tells me, “she screams over math and reading assignments. She does cartwheels behind the teacher when she’s delivering a lesson. A boy called her ‘weirdo’ and she slugged him. She refuses to sit at her desk for anything academic and wants to spend all her time at the Peace Table.”

The Peace Table. Most schools have detention. My kid’s classroom has a hand-carved wooden table where a troubled student can go to chill out. My child has, I discover, taken up permanent residency there. We’re gathered together in the principal’s office today because two hours earlier, he bent low to her ear to suggest she return to her desk, and she shoved him.

“She threw my back out.” He reaches behind him to massage his injured lumbar. I bow my head, but he isn’t finished. “I saw a documentary on kids adopted from Romania. They had reactive attachment disorder—all the same issues as your daughter. The only thing that helps these kids is medication . . . mood stabilizers.”

Gently, the teacher’s mouth falls open. Marijuana’s about to be legalized in Oregon and the smell of it competes with patchouli in the afternoon corridor. My fellow parents may rock the ganja, but our school’s a hotbed of anti-vaccination activists. They carpool up to the Capitol to protest mandatory inoculation, hold chicken pox parties and embrace each other in celebration when their kids present with the itchy red spots. Once, I mentioned to a father in the corridor that I’d taken my child for a flu shot, and he got up in my face.

“Why,” he snarled, “Would you poison your daughter?”

Me, I’m a fan of modern medicine. My child is vaccinated, and when she falls ill, she takes Tylenol. But mood-altering drugs? For a second-grader?

I want to remind the principal that my husband and I adopted our daughter at 19 months old from a skilled foster mother in Oregon—not from Romania where kids once languished, cribbed in their own excrement, for a decade. Instead, I spread my palms out on the table in supplication. I’m beaten, pummeled by years of similar meetings in preschool, in kindergarten, in first grade. I think of a summer camp counselor who summed up my child’s temperament in one sentence:

“She’s not one who earns a lot of stickers.”

At last, I address the principal. “We’ll do,” I say, “whatever you think is best.”

The second-grade teacher stands up, long hair swinging. At six-foot-four, she’s quiet royalty in the shabby room. “I’ll meditate on her,” she says, by which she means she’ll actually stay up an extra half hour that night to sit in lotus position and ruminate upon my child and her issues. “I think there are alternatives,” she concludes mildly, “to drugging your daughter.”

I’d love to believe her. But I think we’ve run out of options.

*     *     *

Research abounds on the effects of constant loving touch and eye-contact with babies. In parks and grocery stores, infants dangle from frontal packs like Sigourney Weaver’s alien baby. My husband and I wore our own daughter in a soft cloth backpack until her feet nearly touched the ground; we gazed into her eyes and hand-fed her long after she could feed herself. But even those ministrations weren’t enough to soothe prenatal exposure to god-knows-what substances, coupled with early emotional neglect.

At birth, relinquished by parents who—in social worker speak—”had priorities other than child-rearing,” she moved in with a career foster mother—a woman who devoted her life to giving bereft babies a decent start in life in exchange for financial stipend from the state. The foster mom—a stoic big-hipped brunette with a passion for dragon decor–drove her charges to medical appointments and arranged for occupational and physical therapists to visit her home. With four children roughly the same age howling the same basic needs, she found little time to coo and cuddle. My husband once walked into her kitchen to find four toddlers arranged in a high chair assembly line, opening their mouths in turn to receive spoons of canned pears.

“She’s a feisty one,” the foster mother told us on the day we met our new daughter. She chuckled, a toddler under each arm, their chubby hands clutching hand-knit stuffed dragons. “Falls asleep squalling in the middle of the living room floor. I just step over her.”

I gazed at the strange little girl tottering across the sunny summer porch. She was dressed in a peach pantsuit with her curls gelled backward. Somewhere, she’d picked up a pointy lawn ornament, which she brandished it in my direction. With her face wrinkled into a scowl, she looked like an aggrieved elderly bingo player who’d been dealt a crappy card.

I didn’t know then about the trauma that foster babies experience—hadn’t considered what it felt like for her to be ripped from the only body, the only sounds and smells she’d known for nine months and embraced by an incubator for a week, and then a car seat and a high chair and a crib, but not by much else.

Perhaps, when no one responds to her pleas for assistance with a wet diaper or with a favorite ball that has rolled under the couch, she learns to holler like hell. She learns to kick and yell and scream because it earns her attention—even if it’s attention in the form of exasperated assistance. Lacking that, she shuts her eyes and withdraws into herself. Alone behind her closed lids, she ignores the fuzzy dragon-slippers that step over her. She searches for peace.

*     *     *

It’s Parent-Teacher Night. My husband and I walk into the second-grade classroom with its walls plastered in colorful drawings and watercolors around rows of two-seater tables. We weave through a crowd of parents embracing and planning play dates and roller-skating parties to which our child is never invited. We stop at a desk in front of the teacher’s podium. “Here’s her name tag,” I tell my husband. “Front and center.”

“She’ll always sit where I can put a hand on her shoulder if I need to.” The teacher looks down at me from her awesome height. “A soft touch helps to focus her.”

As other parents exclaim over their children’s hand-knitted flute cases and beeswax candles molded into the shape of Mozart or Lao Tzu, we look at the curious one-legged stool that stands in place of a chair at our daughter’s seat. “It gives her sensory information,” the teacher tells us, “and helps her to be aware of her body in space.”

We look at her, blankly. She smiles. “It calms her down.”

We heft the weighted blue blanket under our child’s desk—another calming device—and note the noise-canceling headphones. There’s a necklace on her desk—a black string with a blue and white rubber triangle. It’s for chewing; otherwise, she gnaws her pencil in half.

We move toward the Peace Table at the back of the room. “She spends a lot of time here looking at books,” the teacher tells us, “particularly if she’s having a rough day.”

My husband and I sink into the little chairs at the scrubbed wooden table. We grip each other’s hands, no words for our humiliation.

“Breeze is racing through the Little House series,” I hear one mama tell another. “She wants to be Laura Ingalls Wilder. She sewed her own sunbonnet and apron.”
“I wish Moss would read,” a father says. “It’s all about lacrosse at our house.”

My daughter refuses to read. We’ve blown through soccer lessons, basketball, ballet, gymnastics, horseback riding, aerial silks. Each coach and teacher says the same thing. “She doesn’t like to listen,” by which they mean, “She’s giving us a boatload of grief, and we’re sinking. Please, please bail.”

“We’re sorry,” we tell them and slink away from the field or gymnasium or dance studio in the wake of our failure.

At home, presented with requests to feed the cats or set the table or finish lessons sent home from school, our eight-year old howls. If we persist, the insults begin. “I hate you! You’re stupid!” And—wait for it—”You’re not my real parents.” She calls it the “Everything Feeling,” those emotions that collide within her and explode in all directions, causing her hands and feet and words to lash out and hurt someone else as much as she’s hurting.

I look around at the life we’ve created for her—the bedroom full of books and dress-up clothes and musical instruments, the photos on the wall of our family vacations to tropical beaches and wildflower mountains and national parks. I fight an urge to shake her little shoulders and stare into her big brown hostile eyes and yell, “Why can’t you just be happy?”

            But I don’t . . . because I know better. The Everything Feeling’s got me in its grip as well, and has since I was her age.

*     *     *

            I’m eight years old. My mother—my confidante and playmate and Brownie leader–buckles my siblings and me into our station wagon and flees from our chic Los Angeles suburb. She deposits us in a scrappy duplex half an hour north in a scrappier beachside community. A makeup less woman–Budweiser in one hand and Marlboro in another–embraces her. She’s my mother’s new lover. “We’re leaving your father,” Mom tells me.

And, I add silently, my friends and my school and my Brownie troop, our cats and never-ending rabbits and the cute neighbor boy who’s taught me to shoot the bird and pass gas like the Fourth of July.

I don’t say a word; I don’t cry. I’ve heard the midnight screaming and the shattered glass. I’ve seen the black eyes, her bruised nose. I’ve felt her fear and mine, and I’m old enough to grasp the necessity of loss.

To a point, and then, not.

Something in me begins to hate my mother for not protecting me from trauma. I despise her new girlfriend—her rasping voice and her habit of striking a match on the zipper of her Levi’s. I flee our duplex every chance I get and run wild on the beach with a pack of stray dogs. I go feral. I growl at the nicotine stink of the living room as we eat dinner on tired carpet in front of the cold empty fireplace. I fall asleep to the wail of the foghorn on the jetty with my teeth and fists and stomach clenched tight.

It takes my father three weeks to find us. He appears at the front door with a patrol car’s lights whirling behind him and demands that my mother meet him outside. She and her girlfriend stand in the doorway, arms folded across their Superman t-shirts, sans bras. They shake their heads. “No way,” they say.

An officer steps from the car. Red and blue beams flash across the sandy volleyball court between duplexes. He walks up the steps and presents a piece of paper. My mother’s face crumples. We follow our father—me first, then my younger sister and brother, down the stairs and into his Buick. It’s 1978. The DSM IV has recently deigned to remove homosexuality from its list of mental illnesses. Still, a psychologist declares my mother unfit to raise children.

I never live with her again.

As a concession, the judge allows us to see her two weekends a month; apparently, she can’t turn us gay in 48 hours’ time. Every other Friday, she drives down in her VW bus to pick us up from our father’s house. I murmur tearful goodbyes to the stepmother we’re learning to love and shed more tears on Sundays when I’m ripped from my mother. I can’t feel her arms around me, smell her, or see her for ten days at a time. I forget how to draw a deep breath; I walk on tiptoe and read a novel a day between school and bedtime, four on the weekends I’m not with Mom.

“Why can’t you just be happy?”

Each of my parents demands this throughout my adolescence. Every other Sunday night, I sit in my bedroom on the ice-blue carpet, head pillowed on the rosy bedspread, and replay my weekend at the beach. Saltwater and sand still cling to my calves as I sit there for hours, eyes shut tight, hands shaking. No one comes into comfort me.

Therapy? No one has time. Mood stabilizers—out of the question. The Reagans are in the White House; red ribbons tied on the fence around my school remind me to just say no to the hooded stoner kids lounging in my classroom’s back rows. Drugs are for weak people, my father and stepmother tell me, mixing a third gin and tonic. “We’re fine. We’ve got this.”

My insomnia begins that year. My mother’s first girlfriend leaves her. I lay rigid in the darkness, worrying about her until the wee hours. Is she lonely? Is she suicidal? What if she dies? In my father’s bedroom, the battles begin anew—the slamming doors, the screams, the shattering glass. My brain waves twist and warp, training themselves into terror.

But I know nothing of neuropsychology. All I know is a longing to run the safety razor across my wrists as I stand in the shower at six AM. A crushing depression follows me to school, trailing me onto the high school track and the drama club stage.

I don’t do drugs—I do musical theater. I try unconsciously to restructure my neuropathways, boosting serotonin with exercise and music and laughter with friends. Some days, I almost achieve a retraining. But fear triggered by years of Sunday-night separations, by domestic disturbance and an officer at the door suggesting my stepmother take us to a friend’s house until my father stops losing his shit—these incidents reinforce my faulty neuropathways until I stand sobbing in the shower at dawn

*   *   *

I make it through college eschewing all other meds save Benadryl—two of the pink pills at night when chamomile tea and melatonin tablets fail. When diphenhydramine stops knocking me out, I add acetaminophen to the mix. Tylenol PM enables graduate school, marriage, and the adoption of my daughter.

In the daylight, I’m functional. My child is in preschool each morning with a teacher who loves her. But then, she hits kindergarten. Our world becomes afterschool meetings with principals, IEP circuses. The rooms of our house echo with screaming and slammed doors. At night, I lay in my husband’s arms and curse the anxiety that robs me of sleep.

He finds me a psychologist, a mellow and intelligent young man who tells me how much my husband loves me, how much I need help. He tells me a story of his husband—a man my age plagued by insomnia until he went on a low dose of Ambien. “It’s okay to take sleep aids,” the therapist concludes, but I shake my head.

Beholden to a prescription, I explain, means more than just a half hour wait at Rite Aid once a month. It means inadequacy, a failure to function like everyone else, to get a grip.

“Lots of people take prescription meds,” he argues.

I think of Nancy Reagan’s red ribbons and shake my head. “I’m fine,” I tell him. “I’ve got this.”

I take up long-distance running; now I’m thin and muscular and exhausted. Periodically, I break out in hives. An allergy, I tell myself, to sports gel or Gatorade or the flax seeds I spoon into kale smoothies. But when my lips bulge and my eyes swell shut and my husband drives me to the emergency room looking like the Elephant Man and with his same wheeze, the doctor refers me to another who diagnoses Hashimoto’s Disease. Three and a half decades of anxiety and sleeplessness have caused my immune system to attack my thyroid.

“Take this pill every morning.” The pharmacist at Rite Aid shows me the little blue oval of Levothyroxine.

“For how long?” I ask him.

He blinks surprise behind his spectacles. “For the rest of your life.”

*     *     *

Shortly after Parent-Teacher Night, I attend a regional adoption conference. Adoptive parents, foster parents, and social workers share watery coffee and stale maple-glazed donuts in a chilly borrowed office suite, listening to a sociologist talk about the effects of early trauma on a child’s neurological development. Brain scans appear on her PowerPoint like a couple of cauliflowers. “This is the brain of a normally-developing child at three years old,” she tells us. “And this is the brain of a three-year old foster child who’s experienced trauma and neglect.”

We study the runt cauliflower, significantly smaller, and listen to the list of potential stressors affecting our kids. They start in the womb with little pre-natal care and periodic baths in drugs and alcohol. They extend to the shock of delivery and removal from the birth mother, then placement in a sterile neo-natal unit and a transfer to foster parents who may or may not offer physical affection and a tranquil, structured environment.

Some foster parents—mostly retired and courting sainthood—have the luxury of accepting one drug-affected infant at a time. They carry the child everywhere, cuddling, crooning, and feeding them pudding while gazing into their eyes–the works. Others juggle several needy kiddos at once. Money and time, in short supply, don’t permit a whole lot of baby wearing and eye contact.

“Foster kids’ brains have a different structure,” the sociologist tells our goose bumped group of conference participants. “They have a low volume of calming chemicals and a high volume of excitatory chemicals. Our kids view conflict—any conflict—as a threat to their survival. Adoptive parents, no matter how noble their intentions, represent one more trauma.”

Someone raises a hand. “What about medication? Anti-anxiety drugs, anti-depressants?”

The presenter taps the poor little wrinkled cauliflower on the screen with her pencil. “Meds can help,” she says. “A lot.”

She clicks off her laptop and invites questions from the group. I flee to the restroom. In a sterile stall I sit and stare at the door. Right there on the cold toilet seat, I have an epiphany that changes my life.

My brain needs help.

I slink toward my little white anti-anxiety pill at 44 years old, resolute but convinced that I’ve failed at the basic human tasks of sleep and moderate optimism. Within two days of swallowing it, I sleep an eight-hour night. “Everyone’s getting medication for Christmas!” I joke with my husband.

Everyone that is, except our daughter.

            *   *     *

Our eight-year old, I continue to insist, needs affection and attention and hip hop lessons—not mood stabilizers. Never mind that she screams over her plate of spaghetti because it’s got the wrong sauce, screams over the loss of her favorite TV show, chases the cats, fists me in the stomach, and falls into bed squalling. “We’ll find her a good therapist,” I tell my husband. “That’ll help.”

We agree on a kind Polish counselor who does sand play therapy with innumerable plastic Disney figures and teaches our child to lie on her back in a warmly carpeted office and blow soap bubbles, breathing deeply to combat stress. The woman teaches her “rabbit breaths” —short bursts of inhale and a long exhale designed to replace hyperventilating over second-grade math assignments and requests to set the dinner table.

None of it helps. My daughter shoves the principal, who begins sending her home from school mid-morning. “We’re a charter school,” he says. “We’re not set up for behavioral disorders. Think about moving her to a special education class at the public school.”

I grit my teeth. I’ve been a special ed teacher, know first-hand the challenges of wrangling a class full of kids—each with specific needs and none getting optimum attention. I’ve stepped over plenty of squalling children myself to attend to the one toppling computers from desks and punching holes in the walls. “She is not,” I tell the principal, “switching schools.”

In the dank patchouli corridor, when my daughter actually does manage to make it to 2:45, I meet no parent’s eyes. The other second-graders line up in the doorway and shake the teacher’s hand and grasp their hand-woven lunch baskets, heading off in pairs for afternoon play dates and Friday night slumber parties. My child’s the last to leave. She huddles at the Peace Table while the teacher gently reprimands her for the latest shrieking/hitting/spitting incident. At home, she shuts herself up in her room and slumps on the bed.

“I feel like a broken light bulb,” she tells me, surrounded by piles of schoolwork she hasn’t completed.

“What do you mean?” I ask her.

“I’m different from everyone,” she mutters. “I shouldn’t be here.” And then, “I want to be dead.”

I stare at her—my suicidal eight-year old in her blue Frozen t-shirt. The words under a smirking blond Elsa read “My castle, my rules.”

For the second time in a month, I experience an epiphany. What other choice did Elsa have, I think, after 18 years of loss and neglect? Her parents were dead. A propensity for frigid temper tantrums kept her locked in her room. Why wouldn’t she retreat to the top of a mountain, build a fortress of solitude, and take charge of her environment?

Maybe if she’d just swallowed a little mood stabilizer once a day, she wouldn’t have iced an entire kingdom.

I call my husband. He phones a developmental pediatrician and makes an appointment for diagnosis and a prescription. I call the principal and withdraw our daughter from her second-grade classroom. “We’re going to homeschool her,” I say, the sentence absolving me of IEP meetings and outrage and shame. Elsa’s words ring through my head, full of triumph.

My castle, my rules.

*     *     *

It’s 2:45, the end of the school day. My child, a third-grader now, runs to meet a bus full of friends outside the building that houses their afternoon program. They race into a classroom full of art supplies and sewing machines and games and books and beanbags. She has time for a quick hug, a swift, “I love you, Mama,” before melting into a group of giggling girls.

At home, I open my laptop beside her colorful math and literature textbooks, the flash cards, the globe, the Borax crystals and the paper-and-string robotic finger she’s created. We’ve been homeschooling for six months now. We laugh a lot. Sometimes, we argue. On our worst days, when I resent having to wake up too early and stay up too late to attend to my own work, or my daughter fumes at having to study when she wants to lounge on the couch reading Garfield comics, we cry. But mostly, we relish small daily revelations and the one big one—she’s finally happy.

She takes mood stabilizers for six months. They chill her out, but give her a Winnie the Pooh physique and a slowness not conducive to gymnastics and hip-hop classes. With the pediatrician’s permission, we cut the dosage in half and wait for the return of our demon child.

She doesn’t resurface.

Instead, she wakes up smiling, singing, even—excited about her day.

We quarter the pills, then abandon them altogether for a low dose of Ritalin which allows her to learn multiplication and fractions and spelling without chewing her pencil in half.

Several mornings a week, we walk up the hill to a forested park, on a quests for newts in the stream and Cooper’s hawks in the Doug firs. We discuss planets and poetry and how baby chickens can breathe inside the egg.

One day, on a sunny morning on which we’ve discovered four types of lichen on a fallen branch and spent 20 minutes identifying a colossal mound of gleaming black opossum dung, she slips her hand into mine.

“Remember when I was so bad at school?” she asks me.

“You weren’t bad,” I respond automatically. “You were scared and angry.”

We walk past a patch of sunny daffodils. I point out a deer path winding through the tall grass, but she persists.

“I was mad at you for leaving,” she says. “Every day, I missed you.”

I squeeze her little shoulders and stare into her big brown affectionate eyes, remembering what it felt like to be torn from my own mother 10 days at a time.

“I know,” I tell her, and we walk hand in hand toward home.

Author’s Note: It’s been almost a year since I completed the final draft of Rabbit Breaths–a year of homeschooling, of meetings with developmental pediatricians and counselors who diagnosed my daughter with severe ADHD. We’re still looking for the right medication that allows her to function calmly and happily in the world. Not medicating isn’t an option, but my husband and I have greatly stepped up our attention to nutrition and sleep and exercise and outdoor exploration and the arts. As well, we discovered Russell Barkley’s excellent Taking Charge of ADHD and a local parent/child support group. We take each day an hour at a time, practicing (and sometimes failing) our patience and creativity. Most days, we remember to laugh.  

Melissa Hart is the author of the YA novel Avenging the Owl (SkyPony, 2016) and the memoirs Wild Within: How Rescuing Owls Inspired a Family (Lyons, 2015) and Gringa (2009). She’s a contributing editor at The Writer Magazine.

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Commencement Speech for My Special Needs Second-Grader

Commencement Speech for My Special Needs Second-Grader

Conceptual shot of child education. Brown teddy bear in graduation cap leaning on books

By Melissa Hart

Members of the second grade class: two years ago, you scampered down these hallowed halls to play with the unpainted wooden dollhouse and the felted gender-neutral puppets and the classroom newt in a kindergarten done in womb-pink. Among you moved a little boy named Oliver.

Oliver wasn’t like other children. He forged his own way, eschewing circle-time and songs and hand-clapping games, and sprinting for the nearest exit at recess. His voice rang out above all others, commanding attention. He was, in short, a trail-blazer—a child so original that the teacher’s aide devoted her days to him.

As you struggled to form letters and numbers on your soft ecru paper, the aide bent over him, fingers gripping his around the hand-carved pencil, sometimes for half an hour while you soldiered on alone. You wonder now: What did Oliver have that I didn’t have? I’ll tell you:

A learning disability.

Like yours, dear children, Oliver’s parents visited a vast array of educational institutions. They pored over commentary at GreatSchools.org and debated into the wee hours self-directed curriculum versus whole-child learning and how each might ensure happiness.

Oliver–like the 22 of you now sipping chamomile tea while covering your soft ecru paper with watercolors–learned to finger-knit yarn spun from the alpacas you fed on your field trip, becoming so attached to his string that he wound it around his fingers until they turned purple, and screamed and bit the aide. Inspired by his teachers and principal and his tearful disbelieving mother, he forged a new path to a behavioral classroom across town.

He didn’t try to be special, dear hearts; he simply was.

I tell you this because today–as the morning glories stretch and beam from the garden boxes you lovingly decorated—there’s another child in your midst who shows the same spirit that you may recall from Oliver’s days.

Unlike that boy with his feet planted firmly on the spectrum, however, this little girl came into the world drug-affected and placed in foster care. As a toddler, she enjoyed the perks of regular feedings and diaper changes, unhampered by distractions such as caregiver eye-contact and physical embrace. Thus, she learned to sound her barbaric yawp so that she, like Whitman rolling naked in his leaves of grass, might make herself known.

You know her as the child in the front row, directly in front of the teacher’s podium, with all the privileges that weighed blankets and noise-cancelling headphones confer. The letters ADHD mean nothing to you—but you marvel at her ability to turn cartwheels behind the teacher. She’s memorized the words to over 100 songs and locks herself into the bathroom daily to belt them out. She isn’t like you, dear hearts. She marches to the beat of her own drum and refuses to learn with the rest of you how to play the pentatonic flute.

Like Oliver, she doesn’t try to be special; she simply is.

Education is a community-driven endeavor, and you exhibit this daily. For years, the little girl in question watched you arrange playdates and sleepovers in the hallways. She heard thrilling tales of birthday parties to which she wasn’t invited. Just this morning, two of your fathers dialogued in the classroom about a class camping expedition—a trip apparently open to a select few. How inspiring to know that you gather so lovingly to support one another at a school that prides itself on inclusiveness.

A mystery to you, the little girl’s mother who shows up each morning with a smile plastered across her face as you gather outside to jump rope while her child screams because she’s forgotten her homework. What pride the woman exudes as your parents remark on the artful display of her daughter’s uneaten lunch on the floor among her shoes and jackets where they lie below your own neatly-hung Columbia windbreakers and precise rows of Bogs.

How unfriendly that mother appears with dark circles under her eyes as your parents pair up to arrange warm-hearted diversions after school and on weekends. It’s impossible to picture her, dear ones, weeping at night for all she’s been given, not the least of which is a flexible schedule that allows her to work early in the morning and late at night, the better to homeschool.

So you see, dear ones, this story does have a happy ending. Next year, the little girl in question will turn cartwheels each Monday morning in gymnastics class and take professional singing lessons at the music studio downtown. She’ll study on her living room couch, travel weekly to wetlands and science museums and animal shelters. Hell, her mommy may even adopt an alpaca.

For a moment, as you pause on the threshold between your second and third grade classrooms, you may glimpse the future—six more years in these same hallways fragrant with patchouli and the bliss that only true oblivion can provide.

It’s your future, dear ones. Keep in touch.
Melissa Hart is the author of the YA novel, Avenging the Owl (Sky Pony, 2016) and the memoirs Wild Within and Gringa. Web: www.melissahart.com.

 

I Just Needed A Hand

I Just Needed A Hand

By Amy Challenger

overwhelmed-mom“Get that kid OUT OF HERE!” yelled Cindy the music teacher, swatting at the air with one hand while holding up a basket of CDs with the other. She elevated the gifts she had promised to the toddlers, high above their chubby grabbing hands. Her torso twisted, pulling at the seams of a tight, bright-colored jacket. One fuzzy-haired 3-year-old grabbed at her polyester pants. Determined to get to the CDs first, he had already leapt across the room to get to her, like a mini ninja warrior, ignoring her request to stay seated. The other toddlers had followed—a drooling sea of arms and “gimmees.” Now Cindy toppled onto herself, tripping on her awkward feet, before regaining her balance. Her round nose wrinkled beneath her eyes bulging downward, glaring at the lead ninja.

My boy.

Did she really just yell that in front of all of these moms and kids? I thought, glancing at the horrified faces of the women standing along the rim of the scene.

My face flushed. I felt like I might pee my pants. I was helplessly on the far side of the mass of little bodies, and now my arms reached out, paddling through the toddler current to get to my boy. Must. Get. There. Before he tantrums! I thought, panting, trying not to fall on top of my seven-week-old baby girl, who was sucking from my breast, beneath a white cotton sling attached to me.

As music class had ended, Cindy announced that she’d give gifts to all children who remained seated, waiting for their names to be called. The gifts were CDs packaged in colorful cases. I had calculated that these “flingable” objects handed around could trigger my boy’s impulse to chase and grab. And surely the word “gift” would zap his impulse control. The excitement could inhibit his ability to consider other bodies, recognize sounds, or follow commands. As I had considered the impending doom, my infant started to cry. Surely this additional shrill sound would only make my boy’s sensitivity worse. I quickly looked down to quiet the baby, latching her on to my nipple beneath the white cotton fabric of my sling. And then my boy disappeared.

Now Cindy’s perfectly manicured fingers were attempting to detach him from her thigh. “Let go!”

While still clinging to the polyester, he screeched back, “Gimee. Gimee da CD!”

He had been diagnosed with ADHD and symptoms of sensory processing disorder. He had anxiety, maybe PTSD, possibly from his open-heart surgery during infancy and the hospitalization and medications he had received for a life-threatening arrhythmia.

“Excuse me, excuse me,” I said nervously, knowing loud noises, chaotic motion, and prizes yanked AWAY would ensure a complete meltdown.

Weeks before that morning, I had explained to Cindy that my boy had special needs. He’d been kicked out of preschool on the first day for no specific reason while I was in the hospital having my third C-section. “He just doesn’t fit here. Can’t return tomorrow,” his preschool teacher had said through the phone by my hospital bed. Since that morning, I had called all sorts of classes, therapy groups, and preschools, searching for help while caring for my two toddlers and infant, all born in less than three years. When I found Cindy, the music teacher, I had explained that my boy sometimes became “over-stimulated,” particularly during transitions; but a calm music class could provide therapeutic benefits if lead by a patient instructor. She had assured me that, with her numerous years of experience teaching in Tiburon, California, she was fully capable of teaching every kind of child—even a boy like mine.

But there we were. Commanded to GET OUT.

“We have to go, honey! Come on!” I tried, when I finally reached my boy. He kept jumping and pulling on Cindy, so I lifted him with my free arm and pulled him away hollering, kicking, and hitting me. Once close to the doorway where our shoes waited, I lowered myself to the floor, with him on the opposite side of the baby still nursing in the sling. I groped for his shoes with my free, shaky hand. “We have to go,” I said, using my feet to slide our bottoms toward the door while my clumsy swinging arm attempted to land a blue crock onto his wild foot. It was hopeless. My boy hated shoes—they itched his skin—they confined him.

Meanwhile, Cindy handed out the CDs, smiling to the other moms and children, compensating for her earlier outburst. She dropped a plastic case next to me with a grimace, reminding me that I needed to leave.

“I’m trying!” I yelped in disbelief as my boy grabbed for his prize.

“Lemme go!” he screamed kicking at the air, scratching my arm. My infant girl finally became irritated, belting out a cry from below. It was all so ridiculous—opposite of how I had imagined motherhood to be. I sucked cracker-smelling air inward, as I tried to imagine a way out of my humiliation. The tears forced their way out with the exhale, exploding down my red cheeks. My sobs jerked uncontrollably, revealing the truth. I was so tired. So lost. So lonely.

I’m a terrible mom, I thought. Pathetic. I couldn’t even get out of the damned classroom. Worse, I was partially blocking the door, like a wet, ugly mat. The other moms’ white sneakers stepped across our sobbing heap on their way out of the classroom, yanking children behind them, tripping and bumping our legs. They did not speak to me. They did not look down at me. They just left. The children stared a little, peering back, as they were pulled out the door.

After most mothers had disappeared, I finally dragged my shrieking boy outside by the legs, into the dry fall breeze. As soon as we reached the pavement, he jumped up and ran barefoot through the busy parking lot. I chased him, seeing Cindy through my tears. She watched through an open window. “I told you about him… I told you,” I cried.

“This was your fault. Not his. Your infant, your breastfeeding was disruptive,” she called like an angry crow. (I had seen many other moms come with infants, so her comment made little sense to me. But nothing did that day.)

Six years later, after thousands more difficult days of parenting, I reflect back on that episode, and I feel sad. I needed kindness. I needed help. But believe it or not, I think that flailing on the floor of a classroom was one of my early motherhood gifts in disguise. That day, I was forced to learn about parenting from down on the floor where part of my pride fell away in a stream of tears. I had to learn to stop seeking approval from Moms. In order to embark on my mothering journey, I had to find my reward in loving, understanding, and advocating for my struggling boy and his siblings. I needed to focus on my family.

And later, as my mama feet became steadier, that lonely low-down perspective taught me to watch closely for the mothers who might need me. Because I know that a hand lowered, a nod, or even one kind word can make all the difference to a mom.

I hope that my lessons from the floor can become another Mom’s bench to rest on—perhaps a sturdy platform to reach out from, finding at last another mother’s welcoming hand to hold.
Amy Challenger is an artist and writer working in Fairfield, CT on her first novel about a boy’s struggles and triumphs growing up “different.” This year her work relating to parenting has been published in the Washington Post, Mamalode and on her two blogs specialneedsblessings.blogspot.com and thefruitofmotherhood.blogspot.com.

Top Ten Books for Parenting Children With Disabilities

Top Ten Books for Parenting Children With Disabilities

Special Needs Art !These ten books all make two similar points: 1) Your child is more than a syndrome or symptoms or disability, and 2) Navigating the bureaucracy associated with having a child with a disability is challenging. In their own ways, these memoirs and advice books provide advice and comfort not just to parents whose children share a similar issue, but to all. Lessons about self-reliance and acceptance are important for all kids.

These books were published in this century, which makes sense given that we know so much more about how young brains and bodies develop than we ever have before. All of them also talk about similar acronyms like IDEA, IEE, and 504. While some of the books focus on just one special need (like autism or learning disabilities or genetic conditions or Down’s syndrome), together they look to the future in some way, helping children to develop into adulthood—when they will become adults with disabilities, a specific population two books on the list focus upon.

Be sure to consult the books for lists of resources and suggestions for further reading, and don’t let some of the scientific journal articles listed scare you off. Remember you know your child better than anyone else. Educate yourself and trust your gut.

Parenting Children with Health Issues and Special Needs by Foster Cline and Lisa Greene

This condensed version of 2007’s Parenting Children with Health Issues is a useful volume that focuses on the emotional development of ill children. While originally written for kids who have chronic medical conditions (like diabetes or cystic fibrosis), the 2009 version also includes advice for those with autism, learning disabilities, and other similar conditions. More importantly, it has advice for all parents—like nurturing self-concept and being a consultant parent rather than a drill sergeant or helicopter. The main take-away is that children need to learn to take responsibility for their own bodies and adhere to medical advice. This can happen by 4th or 5th grades, but certainly needs to happen by high school. Parents can let children choose when to do treatments, but not if; banking lots of smaller choices means parents can sometimes cash in bigger requests or respond with, “I love you too much to argue.”

A Good and Perfect Gift: Faith, Expectation, and a Little Girl Named Penny by Amy Julia Becker

I dare you to read this book and not tear up several times at the rawness of Becker’s emotion in describing her relationship with her first-born, Penny. The Beckers faced an unusual situation in this day of prenatal testing: they were surprised when their daughter was born with Down’s syndrome. A Good and Perfect Gift chronicles how Amy Julia and her husband, along with their families, friends, and students, come to understand Penny and what she adds to their communities. Published by a Christian Press there is quite a lot of religiously-motivated discussion, but for those unfamiliar with this point of view it won’t distract from the larger messages of the book. Becker finds that Penny having Down’s syndrome was hardest to deal with in the abstract, but once they were in a room together she became nothing more than their wonderful daughter who happens to have an extra chromosome. The lessons about pity versus compassion will help all of us who know someone with a special needs child.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son by Ian Brown

The Boy in the Moon is Canadian journalist Ian Brown’s lyrical memoir about his son, Walker. Walker suffers from a rare orphan genetic syndrome (meaning it comes out of nowhere), labelled Cardiofaciocutaneous (CFC). Given the small numbers who have it not much research is devoted to studying CFC, and as Brown soon learns he often knows more about it than the pediatricians he sees (as do the other parents with CFC children he meets and stays connected with via the Internet). This is partly because, as Brown describes, “High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level.” Yet, parents will see themselves in the constant fights Brown and his wife have over who is getting more sleep (though their fight goes on for 11 years). Brown’s story reminds us that we all need to be advocates for our children to help them develop the best inner and outer lives possible.

Will My Kid Grow Out Of It? A Child Psychologist’s Guide to Understanding Worrisome Behavior by Bonny J. Forrest

Dr. Forrest’s practical guide will appeal to parents who are worried their children may be depressed, autistic, ADHD, schizophrenic, or have an eating or learning disorder. While she is clear that Will My Kid Grow Out Of It? is not meant to be a substitute for professional advice, her advice is plentiful. She believes there is no downside to screening a child because a parent will either get reassurance or get early access to the resources a child needs. Forrest reminds us that, “Although one in seven children has some form of developmental disability, fewer than half the pediatricians in the country screen children for these disorders.” On top of that there are few gold standard research studies in child psychology and lots of “cures” in the popular media; she discusses these and suggests questions parents should ask when choosing professional to help children. Note this book offers a useful bibliography divided into sections like scientific journal articles, books, and websites.

Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities by David Flink

Like Dr. Forrest, Flink pushes testing and assessment for children because it helps families and schools build profiles that can lead to useful interventions. Flink focuses on “learning disabilities,” which are, “Generally understood to be an umbrella term for neurological difficulties in the brain’s ability to receive, process, store, express, and respond to information.” Flink himself has been diagnosed with a learning disability, dyslexia, and ADHD, and he is an expert in navigating how to use the educational system to get help. On top of that, he started a mentoring program called Eye to Eye, that links college students with LDs to middle schoolers. Flink’s own story of attending an Ivy League college, and authorship of this book, should help reassure parents that a label doesn’t define a child. His Chapter 3, “Take Action,” is especially helpful in explaining to parents the laws and evaluations that can help children access help (his discussion about whether to hire an independent evaluator or use the one the school provides is important).

Essential First Steps for Parents of Children with Autism: Helping the Littlest Learners by Lara Delmoline and Sandra L. Harris

This short book by two professors who run the Douglass Developmental Disabilities Center at Rutgers University is packed full of useful information. Each chapter starts with the story of a specific family who has a child with an autism spectrum disorder and ends with a list of further reading and resources related to that chapter whether it be on self-help skills or play. Delmoline and Harris write that 20-30 years ago it would have been unlikely to get a diagnosis for a child under three, and usually not until five or six. But with powerful interventions, like Applied Behavior Analysis, younger children can benefit greatly. The authors emphasize though that any intervention needs to be done by a trained professional who should know just as much about what treatments haven’t worked as those that have. A focus on your individual child and data on him or her is also vital to seeing changes in child’s performance and behavior—so parents, start taking notes!

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz

Sensory processing disorder is seen as a new definition of an old problem. Until recently it was often overlooked, except by occupational therapists who are most effective in helping children with a range of sensory processing issues. Like other authors on this list, Kranowitz is a strong advocate for early intervention—even recognizing that insurance doesn’t always cover the cost of therapy, mainly because the disorder still isn’t included in the latest DSM. Regardless of whether your child has sensory issues, or other medical needs, you should read the section in Chapter 8 on how to build a relationship between a therapist and child (hint: emphasize that it’s fun). Kranowitz presents many checklists and questionnaires throughout the comprehensive book, but her images are also useful, like saying we should think of sensory processing disorder like indigestion of the brain and just like an antacid soothes, kids need occupational therapy to smooth their neural pathways.

The Complete Guide to Creating a Special Needs Life Plan: A Comprehensive Approach Integrating Life, Resource, Financial, and Legal Planning to Ensure a Brighter Future for a Person with a Disability by Hal Wright

Eventually many children with special needs develop into adults with special needs. Hal Wright is a Certified Financial Planner who has a daughter with Down’s syndrome. This book deals with various forms of planning, but the sections on financial and legal planning are especially useful. Wright talks about siblings and how parents need to be fair to help all children financially, while also knowing siblings often take on other burdens related to special needs siblings. He cautions that just as state disability services “are more extensive for people with developmental disabilities than for those with mental illness or physical disabilities. There is also a greater emphasis on the needs of pre-school and school-age children than for adults.” It is up to parents to plan ahead and deal with the practical intricacies as children become adults and this book acts as a sueful guide.

Parenting an Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child’s Future by Peggy Lou Morgan

If Wright’s book focuses on the practicalities of having an adult child with special needs, Morgan’s book focuses on the actual caring issues. She writes, “All parents deal with the sometimes-paralyzing question of what happens to adult children when we can no longer be there for them. While legal documents are very important, they may not prepare caregivers, nominated representatives, or others to understand someone who may not be able to communicate his needs directly.” For Morgan the title of Chapter 3 says a lot, “Loneliness is the Only Real Disability.” She explains that even service dogs can be helpful, though many residential homes don’t allow them. Nonetheless creating social connections important for special needs kids/adults—especially if parents are not able to be around much, if at all. The sample caregiver’s manual in the appendices is important for anyone working on this daunting task.

Touchpoints Birth to Three: You Child’s Emotional and Behavioral Development by T. Berry Brazelton and Joshua Sparrow

You might be surprised to find a book on this list that focuses on “typical” developmental milestones. But many parents of special needs kids express, as Becker does in A Good and Perfect Gift, that it can be helpful in a way to see in what ways a child is attaining milestones at around the right time (could be verbal if physical is a problem, or vice versa). Touchpoints recognizes not only development forward, but also regression at certain times. While “touchpoints” are universal, “driven by predictable sequences of early brain development,” they obviously don’t always apply to all. Part 2 discusses various challenges to development in alphabetical order, including allergies and asthma, developmental delays hypersensitivity, and speech, language, and hearing problems. So some special needs parents may learn a bit, but they will also benefit from discussion of other issues like divorce, television, etc. In the end, a book like this reminds us that each child is an individual and not just a symptom, disorder, or disease.

Hilary Levey Friedman is the Book Review Editor at Brain, Child and the author of Playing to Win: Raising Children in a Competitive Culture

 

When ADHD Goes to School

When ADHD Goes to School

By Keaghan Turner

Converse C w colorIt’s about that time in the semester when the first paper due date looms on the syllabus, and college students start pulling out their ADHD. They approach the lectern after class and spill their psychological guts. About their quiz grades … about the paper length … about that first novel we read … about their paper topic.

Eventually and awkwardly they get to the point, trotting out what I know is coming: They have ADHD. They might need an extension, they’re planning to come by office hours, they can’t remember what they read for the quizzes, they had a tough time getting through the whole book, their doctor is adjusting their Ritalin or Adderall or Vyvanse dosages. “Yeah, yeah, yeah,” I would think. “If I had a nickel,” I wanted to say. What a pop-psychology diagnosis! What a crutch! I shook my head in academic dismay over such a Made-in-America “disorder.” How could so many parents be hoodwinked by the big pharmaceutical companies? Maybe if they made their kids read a book once in a while instead of allowing them to play video games for hours at a time they wouldn’t have ADHD. What is the world coming to when college kids need medication to help them read, write, and study? Why are they in college if they can’t do what kids are supposed to do?

Turns out, ADHD is real. At least, it is at my house. And no one was more surprised than me. I wound up with a toddler who might be down the street—naked—before I realized he had left the kitchen, who couldn’t be trusted not to draw blood on the playground, and who broke my nose once (at least) by throwing his aluminum thermos at me from point-blank range. “This is not normal!” I cried, holding an ice pack to my nose. My little boy McDiesel faces off with Escalades in the middle of the street, he cannonballs into the hot tub, he smashes Lego Starfighters—with no provocation or warning—that his big brother has painstakingly built. He has shattered two flat-screen tvs and one MacBook, pulled a leaf of the kitchen table clean off its hinges, and reduced a 1920s mahogany dining room chair to sticks. He is fierce. Feral.

My mother said it was lack of discipline. Friends said it was the Terrible Twos (and then Threes!). Doctors started saying things like it was too early to say for sure if it was ADHD, and that we wouldn’t want to jump to the conclusion that it was ADHD.  My husband didn’t know what to say. I didn’t say anything. (I was shocked: Why in the world were they talking about ADHD? What could my kid breaking my nose have to do with writing a paper? Plus, I do everything right—I recycle, I clip box tops, I have a Ph.D., we have good genes! Nothing could be wrong with my kid.) Everyone said, “What? ADHD? He’s just … active.” or … just impulsive, just curious, just energetic, just willful, just physical, just fearless. Check, check, check. Almost every word matched the Child Behavior Checklist we filled out at the pediatrician’s office, then at the behaviorist’s, the child psychiatrist’s, the occupational therapist’s, and the chiropractic neurologist’s.

We were all right, of course: it wasn’t normal. That is, it wasn’t “typical,” but it was “just” something: textbook ADHD. A severe case, but still, according to our Beloved Behaviorist, it could be worse. I’ll have to take her word for it.

And now we’re sending McDiesel to school. Real school. Public school. True, as my husband says, finally we don’t have to worry (much) about him getting kicked out the way we did at his preschool. But being part of the school system seems much more serious. They have official paperwork for this kind of thing. There, under “Asthma,” is where we check the box. Now is when we label him. Until he goes to college and will label himself, approaching a lectern and saying that he has been having trouble with the material, that he needs help understanding what exactly the professor is looking for, that he has ADHD.

In the meantime, McDiesel’s new kindergarten class newsletter explains the breakdown for daily behavior reports, which, in the past three years his big brother, Typ, has been in school, I have never paid much attention to before:

Happy Face

Squiggly Face

Frowny Face

These three options seem at once overly simplistic and completely adequate. The school day is long and most of McDiesel’s days are filled with happy, squiggly, and frowny faces in different combinations. (Aren’t most kids’?) Every day is a behavior grab-bag and slim chance the Happy Face is going to take the day. McD’s a Squiggly-Face kind of kid, after all. Just textbook ADHD, as our Beloved Behaviorist would say. His happy-face behavior lights everything up; his frowny-face behavior is impossible to ignore and difficult—in the space of a mere six hours of almost constant contact—to forget or overlook.

On the first day of school, McDiesel proudly comes home with a Happy Face and a note that he had a “great” day. Oh, I think. Maybe it won’t be that hard. Maybe he won’t need medication. Maybe we won’t begin filling out Individualized Education Plan paperwork. Maybe he can behave for six hours. My anxiety ebbs. The second day, he hops off the bus and pulls out his chart—obstructing the bus doors—and thrusts it in my face: “Squiggles!” he pouts. Attached note reads: “Sassy!” (Also a deceptively adequate measure of behavior). My anxiety flows. Next day, I take necessary precautions. I dress him in an overpriced preppy T-shirt, madras shorts, and Kelly green converse chuck Taylors. The strategy is to distract Mrs. W. with cuteness. Can she possibly give a Frowny Face to a kid who looks so stinkin’ good? Alas, yes. As if on cue, confirming my sense of some cosmic inevitability, the third day of school, last Friday, brings the dreaded Frowny—a face that has never before entered the house in the two years our family has been at this elementary school so far. (Big brother Typ—wide-eyed—gasps and avoids contact with the paper altogether.) Mrs. W., the teacher I have special-requested, provides a short laundry list of ADHD symptomatic behavior alongside the Frowny: distracting others, talking during instruction, laughing while being disciplined. My anxiety flows some more, approaching tropical-storm categorization. (Come on! I think. What about the Chuck Taylors?)

McDiesel sulks. Things had been going so well. Behavior seemed to be on the upswing during the summer—to the point I was crediting 45 minutes of Occupational Therapy a week for working an almost miraculous transformation: Maybe some beanbag tossing and a sensory tunnel really can undo ADHD! Now OT seems useless. McD seems doomed to a Frowny Face-filled kindergarten year. All of the statistics about learning disabilities, poor academic performance, and social difficulties jockey for position among my myriad anxieties. I sulk.

I spend all weekend promising to come to school for lunch, reinforcing the extra-special milkshake celebration we will indulge in if Monday sees the return of the Happy Face, and even madly agreeing to a trip to the Target toy aisles (negotiated by opportunistic big bro Typ) as a reward for a week’s worth of Happy Faces.

I drive to school Monday, quizzing McD on how to earn a Happy Face (“Listen to Mrs. W.”) in case he might have forgotten or tuned out any of my coaching sessions.

Then Monday afternoon comes and the cosmic forces have realigned: McDiesel has earned a Happy Face with a note that he had a “way good day!” My anxiety is checked, the tropical storm dissipates. We head out for vanilla milkshakes.

Now I’m worried I might have been too lax this week in continuing the behavior pep rally. Yesterday, I drove up hopefully to the drop-off point in front of school. Carpool kids and big brother Typ hop out with waves and smiles. McDiesel unbuckles and acts as if he’s about to do the same. Then, he doesn’t budge, wants me to walk him in, holds up the entire drop-off line, and dangles halfway out the open car door. Frantically (and I hope not too sharply) I call Typ back from the school entrance to grab and drag (if necessary) McD away from the car and through the door. The principal announces over the PA there will be no tardies today because of traffic back-up. I have no choice but to jump out of car, walk around to his side (avoiding eye contact with all parents stacked up behind me in the drop-off lane), remove McDiesel and his backpack, close the back door, and leave him standing curb-side in the rain, a scrunched up squiggly face in my rearview mirror.

But that afternoon, when I ask McDiesel about his day, he says the happy parts were bigger. He was only a little bad. I open his folder and, voila, it’s true! I’m going to get Mrs. W. the best teacher gift ever this Christmas. She gets it. McD is not doomed to a Frowny Face kindergarten year or to years of academic distress. In the center of the Wednesday box, she’s drawn a medium-sized Happy Face. Beside it she’s written: “Precious little boy!” In the bottom right corner, she’s drawn a smaller Frowny Face. In parentheses: “Kept jumping in puddles when told not to.”

“You know,” I tell my husband, as if this is news to anyone. “A good teacher is going to make all the difference for McDiesel.” Back on campus, I assess my students, not as their professor but as McDiesel’s mother. I see the telltale signs: That kid always has to get up and throw something away. This one shakes his foot for the entire fifty minutes. There’s one who can’t stop talking. Here’s one who is approaching the lectern. I imagine their kindergarten selves, their anxious parents who wait to hear how they did, if they got a Happy Face, if all the medications and therapies and specialists and interventions did the trick. And I know they’re like me, waiting for the report, waiting to learn if their kid is making the grade, if he’s going to be all right.

So my student comes up to the lectern and begins his fumbling explanation.

“Sure,” I say. “I totally understand. Let me help you….”

You won’t believe this, but it’s true: he’s wearing green chuck Taylors.

Keaghan Turner teaches writing, literature, and women’s studies at Coastal California University. Her recent essays have appeared in Brain, Child, Babble, South Writ Large.

Illustration by Christine Juneau

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The Invisible Boy

The Invisible Boy

By Angelena Alston

ASHTON_BM“He not singing Mommy,” my three-year-old daughter half-spoke, half-shouted in the crowded middle school auditorium. A few heads swiveled towards us and knowing smirks broke out on the faces of people nearby. Like any good mom would, I hurriedly sshhed her. She went about her business and continued digging in my purse for a handful of multicolored goldfish. The stage was a sea of white tops and black pants. My son was on the far left, almost at the end of his row. And, as usual, my three-year-old was right. Her brother was barely mouthing the words to a popular Christmas song.

My ten-year-old son has a nice singing voice. For the concert that night he had been excited to the point of nervousness. He’d spent days telling me the songs they were going to sing over and over again. Yet, there he was with a faraway look in eyes, his lips barely moving. It’s not that I was surprised, each year he’d stand there looking constipated and barely mouth the words. Admittedly, some years were better than others.

I leaned back in my chair and tried unsuccessfully to grab my purse back from my daughter as she continued to stuff her mouth with pilfered goldfish. It wasn’t always like this. When my son was three and in pre-school he had been so smart, so full of energy and personality. When his class had a nursery rhyme hit parade, he stood in front of a large group of parents singing with the rest of his classmates. He had to go to the bathroom and was holding onto his private parts for dear life during the whole performance. He never stopped singing.

That was Before.

Long Before changing schools, special classes, countless tears from both of us, doctors visits, two trips to the hospital, medication three times a day. Before our lives changed with the official diagnosis of Asperger’s Syndrome, and ADHD.

Even back then, at three, my son had signs of the illness: he was always lining things up, he had an intense sensitivity to noise, and he was unable to adapt to or accept changes. His diagnosis became official when he was seven, a second grader.  He was the same age then as my middle daughter is now.

After he was diagnosed everything changed. He started going to a different school, he started therapy, and eventually medication for the ADHD. As he got older his symptoms became more obvious; he couldn’t get along with kids his own age, he couldn’t make friends, he couldn’t deal with everyday frustrations, and his motor skills were delayed.

Autism is so complicated because it’s not about the behavior so much as how the way the brain works; the way we form our thoughts and from there our emotions. It’s about how we make sense of the world. Without a basic understanding of how things work in a real world sense, making decisions, and dealing with other people is a constant struggle.

And the saddest part is that beneath all of that my son is so breathtakingly innocent and considerate and sweet. Anytime he goes to the store and buys something for himself, he makes sure to get something for me and his sisters. He shines, like a piece of glass half buried in the sand.  It’s easy to forget the softness that exists as he harasses his seven-year-old sister, as he screams and cries because he can’t find a pencil that was “right there!” as he accuses me of stealing from him when he misbehaves and I take away one of his electronic toys.

All of this is in such sharp contrast to my youngest daughter. Whereas he is easily distracted, easily frustrated, she can be focused as a laser, able to figure out many things on her own. Sometimes I look at her and wonder if only. If only her brother didn’t have This Thing. This Horrible Thing that stands in his way, keeps him from one of the best things in this life, finding real connections with others, making friends.

I hate Autism.

There. I said it. I hate that my son’s own mind works against him, that he gets so stuck moving forward, that growing up is not only hard for him, it’s painful as hell.

Sitting at the concert, watching my son try his best to be “normal” my heart went out to him. I tried to wave and smile encouragement but we were sitting too far back for him to see me. In the end, he sang a little bit, but mostly he stood there looking stiff and uncomfortable.  I felt sad for him. And then it was over, my son’s next to last concert as an elementary school student. It was a painful reminder that whether he’s ready or not, a new phase in his life is about to begin. Whether I’m ready or not, too.

As all of the fifth graders filed out the auditorium, I left the girls with their dad and headed for the cafeteria to pick up my son. I caught up with him in the hallway and we headed to the cafeteria to get his coat. As I walked close to my son, he said in a quiet voice, “How was I?” He didn’t yell it so loud that everyone nearby looked in his direction, he didn’t say it in a high-pitched voice so that he sounded much younger than his ten years.

I started to teasingly say, “Great.” Dramatic pause. “But next time you should actually sing.”

Instead, I found myself not saying a word because I had the sense something important was happening. In all the years, he had never once asked how well he had performed. If I really thought about the reason why, it’s probably because I always jump in without hesitation; I tell him how great he did, truth notwithstanding. For the first time, that night, I hesitated. For once, his mother, his faithful cheerleader, was silent; no gushing compliments, no clever quips. As I walked beside him, I suddenly realized what a toll all of this is taking on me.

I try my best to be encouraging and hopeful, to let him know he will always have me. But over the past year or so as his behavior has become less manageable and everything at home has fallen bit by bit into chaos, I have stopped trying so hard. I can’t do it anymore. It is exhausting to constantly micromanage someone else’s emotions, to have to anticipate someone else’s meltdowns. It takes so much energy to get from one day to the next. As his softly spoken question hung in the air for a beat, things seemed simple again; he was just a kid who loves his mom and wants her to think that he is good.

“You were great,” I told him smiling.

And as much as I hate autism, I love him with everything that is in me. As hard as it is, the more I can separate the disease from the essence of who my son is, the better off we’ll both be. It’s not easy to watch my son get hurt over and over, to watch him struggle. But in that moment I realized the hardest thing of all: it’s his fight, not mine. All I can offer is my love and support and hope and pray that when all is said and done that will be enough to help him get through the difficult days ahead.

I reached over and gave him a quick hug and a squeeze. He smiled, his whole face lighting up with something that I can only call pride. That’s better, I thought, feeling some of my strength come back to me. That’s much better.   

Angelena Alston is a freelance writer from New York. She is a mother of three children with strong personalities. In between working as a nurse and writing she spends her time acting as a referee/confidante/chauffeur to her boisterous brood. 

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A Label She Loves

A Label She Loves

By Dorothy O’Donnell

0-4By the time my daughter, Sadie, was in fifth grade, I’d stopped asking the usual mom questions—What did you learn today? How’d you do on your spelling test?—when I picked her up after school. I had more important things on my mind. Like how people responded to whatever ensemble she’d painstakingly put together that morning.

“Did you get compliments on your outfit, honey?” I asked one spring afternoon as she slid into the back seat of my Subaru.

“Yeah,” she chirped, her dark eyes dancing in the rearview mirror. “A lot of people really liked it!”

I smiled back. She had on a once plain, oversized lilac sweater from The Gap that used to be mine. It was headed for Goodwill until she rescued it from the donation bag I stash in the garage. Inspired by a shirt she saw on a TV show, she used a red Sharpie to adorn it with a pair of giant Angelina Jolie lips, transforming it from boring basic to hip fashion statement. The sweater was cinched with a wide, stretchy fuchsia belt. She paired it with gray jeggings tucked into last year’s Old Navy motorcycle boots—boots I would have snatched up in a heartbeat if they came in my size. A pink and blue plaid fedora, tilted at a sassy angle across her forehead, completed the look.

She is fond of hats. Printed scarves. And for a touch of bling, her prescription glasses with the diamond-studded, purple frames. Anything that helps her stand out in a good way at school. A place where she’s used to getting noticed for all the wrong reasons.

Sadie was diagnosed with a mood disorder and ADHD just before she turned six. With treatment, the differences between her and her peers aren’t as obvious today. She doesn’t pop up from her seat every five minutes to march around the classroom or sharpen her pencil for the tenth time. She raises her hand (usually) instead of blurting out off topic, sometimes nonsensical remarks. She doesn’t erupt if a classmate accidentally brushes against her chair. She is better at following directions.

Yet traces of the reputation she forged back in kindergarten and first grade linger. Some kids still think of her as the bad girl. The girl who never listens. The weird girl.

Though she’s smart, keeping up with her work is a struggle, even with extra support at school and help from a tutor. Problems with organization, focusing and processing information slow her down. She is all too aware that it takes her at least twice as long as most of her classmates to finish her assignments. That they can breeze through five pages of a book in the time it takes her to slog through one. That she’ll never whip through 50 multiplication problems on a timed quiz fast enough to earn a coveted spot in the Math Champs Club.

Sadie’s exclusion from such academic achievement “clubs” used to bother me just as much—maybe more. Like any mother, I want my child to have a chance to shine. I was a straight-A student for most of my school years. So was my husband. It was hard, at first, to accept that our daughter wouldn’t naturally follow in our footsteps.

Eventually, I let go of worrying about her grades and whether she’ll get into a good college. I try to focus on nurturing her many strengths instead. Especially her abundant creativity. The more she taps into it, the better her odds of finding her own path to happiness and success. I catch glimpses of this happening when she sings in chorus; writes a compelling—if poorly punctuated—story about her imaginary adventures on Rat Rock Island; or draws one of her trademark vividly-colored, saucer-eyed fairies. And, increasingly, as she experiments with expressing herself through clothing.

There’s no doubt the compliments she receives for her stylish get-ups have boosted her self-esteem. She may never look forward to school. But entering her classroom with a head-turning outfit each morning makes it a little easier.

Of course, living with a budding fashionista has its downsides, too. Sadie’s refusal to venture out of the house in anything less than the perfect outfit often leaves her room looking as if it was invaded by a hoarder: Piles of rejected pants, dresses and shoes litter the floor and bed. Tops, sweaters and socks that failed to make the cut explode from her dresser. Her obsession has also made us late to school more than once. But when she feels good about what she’s wearing, there’s a swagger to her step as she struts to the car that makes such inconveniences a small price to pay.

As she prepares to enter middle school, Sadie’s cultivating a new reputation. One I hope will buoy her as she navigates territory that can be tricky for any tween. She’s becoming known as the girl with the cool clothes. The creative girl. The girl with style. And those are labels she wears with almost as much pride as her favorite boots and purple glasses.

Dorothy O’Donnell is a freelance writer whose work has been featured in various newspapers and on greatschools.org, mothering.com and NPR. She is working on a memoir about raising a young child diagnosed with pediatric bipolar disorder.

Why It’s Not OK To Label Our Children

Why It’s Not OK To Label Our Children

By Julie Hill Barton

0-6When my first daughter was born, I fell madly in love with her. I remember crying in my hospital bed, my dad whispering, “You okay?”

“Yes,” I said, wiping my tears. “I knew I would love her.  But I didn’t know I’d love her this much.”

That baby is eight-years-old now, has a five-year-old sister, and I still vividly remember how blessed I felt that day, how confident I felt that I could raise a strong, kind, loving, self-assured girl. I always had a deep-down faith that I knew how to teach my girls’ right from wrong, kindness from thoughtlessness, respect from carelessness.

That is, until our oldest daughter reached kindergarten. At our spring parent-teacher conference, we learned that our sweet girl was sometimes monopolizing her best friend, could be grumpy with peers, and had rolled her eyes at the teacher. The teacher suggested our daughter needed to see the school counselor. When the conference ended, and I managed to extract myself from the tiny chair, I walked outside and burst into tears. What had I done wrong?

It has taken me almost four years and lots of drama to understand that all of this has very little to do with me. I’m doing my best. My daughters have vastly different personalities, and that’s just how they came. Both have strengths and weaknesses, and both are at the core, nothing but good.

My oldest is in third grade now. I’ve watched as she has learned, through trial and error, to be a good friend. She is strong and confident, but she gets hurt sometimes too. It’s all part of that sticky process of growing up.

In second grade, she asked her best-friend-since-kindergarten if they could have a play date. Her friend replied, “I can’t have any more play dates with you because my mom says you’re mean.” My daughter came home with eyes as big as saucers, collapsed into bed and wept.

That was a year ago, and she still talks about it. She still asks me if she’s a mean person. She was seven-years-old when this happened, and I fear that the trauma of this one word being uttered about her by one careless adult will forever be etched in her heart, making her question her own goodness.

I called that mom, who was my friend, and she mumbled that our daughters were both mean sometimes. She tried to make a joke about girl drama, but I wasn’t laughing. I hung up feeling sick and guarded, and hyper-aware of how nonchalantly we, as a society, label children.

A short list of things I’ve heard parents say about other children: “He’s a shy kid.” “She’s such a sweetheart!” “Ugh, that kid’s a nightmare.” “She must have ADHD or something.” When we say these things, it’s the emotional equivalent of juggling knives in the NICU. We’re putting children in narrow boxes, cornering them into behaviors and personalities that they’ll then feel that they must inhabit. We all experienced this as children in the 60’s and 70’s. Isn’t it time we changed the course for our children?

I can’t say it clearly enough, both to myself and to other parents: There’s no mean one. There’s no nice one. There’s no sweet one. There’s no nasty one. They’re all little imperfect, nascent beings with every single one of the above qualities healthily intact.  As my daughter’s third grade teacher says, “Label the behavior, not the child.”

I was in school just a few days ago and watched my daughter walk by her former best friend in the hallway. They waved at each other with a longing so sweet and strong that I wanted to hug them both, tell them it was okay to be friends, that it was their choice and no one else’s, and that they were both nothing but walking goodness, simply and beautifully learning their way in the big, wide world.

Julie Hill Barton is a writer and mother of two daughters in Northern California. She has an MA in Women’s Studies and an MFA in Writing. She is currently writing a memoir about battling depression with the help of a remarkable therapy dog. You can read more about her athttp://www.byjuliebarton.com.

In Defense of the Nap Year

In Defense of the Nap Year

By Rebecca Lanning
JordanLysenko_BrainChildNapYearEverywhere I go, people ask about my son Liam. They know he graduated from high school and want to know what he’s doing now. Smiling politely, I say that Liam was accepted to his first choice college. And then, just in case someone spots him around town, I mention that Liam deferred enrollment and is taking a gap year.

“How cool!” everyone says, but I sense by their placating tone that cool is a euphemism for crazy or scary or just plain dumb. I suppose their reaction goes with the territory, in one of the most educated metropolitan areas in the country where almost everybody’s name is followed by its own alphabet, and competitive parents raise go-getter kids.

The other day a woman in my lunch-time yoga class told me she’d never let her daughter, a high school sophomore, take a gap year. After all, the woman said, her daughter would be going to grad school, launching her career, and starting a family. She didn’t have time to goof off.

I wish I’d just moved my sticky mat to the other side of the room. Instead, I tried to convince this woman that taking a break from formal education was not a waste of time. “Many top colleges actually encourage students to take a gap year,” I said. “It gives kids a chance to figure out who they are and what they want out of their college experience.”

“So what’s your son doing with his windfall of free time?” she said, baring tiger-mom teeth. “Is he traveling abroad? Doing research?”

My cheeks burned as I played along, offering sound bites. A startup venture. A film project. Independent study. What I failed to mention was that my handsome, broad shouldered son was, at that very moment, home in bed with the shutters drawn, covers pulled over his head.

Officially, Liam is taking a gap year. But after 13 years of school, what he needs, what he’s earned, is a nap year.

“He’s not where the other children are,” Liam’s kindergarten teacher whispered to me one morning. I knew what she meant. Clumsy and slow to read, Liam rested his head on his desk a lot. His written work, smudgy from excessive erasing, looked like bits of crumpled trash. Still, her remark stung. I couldn’t shake the image of 20 kids on the playground, climbing on the monkey bars, and Liam alone on the soccer field picking dandelions. Not where the other children are.

Had I been the sassy sort, armed then with the knowledge I would later accrue, I might have joked with that teacher, told her that Liam had greater aspirations than being normal. But I wasn’t there yet. Confused and fearful, I had no idea how to stand up for my son or find the help he needed.

School was torture for Liam. He couldn’t take notes, failed to turn in homework, forgot when tests were coming up. It was as if he attended school in a country where he didn’t understand the language. Except he did understand the language. On standardized tests his verbal scores consistently exceeded the 99th percentile.

“Just get him through school,” his first grade teacher advised. Neither of us had any inkling what a long and painful road lay ahead. But her advice became my mantra: Just get him through.

Over the next several years, Liam was evaluated for learning disabilities (LD). While he had a superior IQ, an excellent memory, and a solid grasp of complex linguistic cues, he fatigued easily and suffered from weak sensorimotor, visual perceptual, and language output skills. And because he exhibited all nine symptoms of Attention Deficit Hyperactivity Disorder or ADHD-inattentive type, he was slapped with that label too.

While these evaluations provided useful information, they never answered our more pressing questions. What type of school would serve Liam best? Is there a way to determine reasonable academic expectations? How do we know when to push, when to back off?

By the time Liam hit sixth grade, I’d reduced my work hours and my husband increased his so I could be home in the afternoons to help Liam with homework – an often overwhelming effort. Even with a master’s degree and years of teaching experience, I still struggled to re-teach Liam everything he should have learned at school.

“You can do this,” I would say as Liam sat slumped beside me at the kitchen table, eyes red and glassy from working overtime, having to learn everything twice. We’d go over math facts, science terms, and spelling words until they stuck, and then review them again. It was like doing taxes or cramming for exams. Every. Single. Night. We were Lucy and Ethel in the factory trying to wrap candy as it sped ever faster down the conveyor belt. My heart broke watching my son struggle to assimilate all the information flying at him and then to organize his work on the page. Some nights, my own head spinning, I sent Liam to bed and completed his homework for him, that old refrain riding me, taunting me: Just get him through.

Occasionally, I could detach long enough to recognize the insanity of our situation. I kept thinking of that Einstein quote. “If you judge a fish by its ability to climb a tree, it will believe its whole life that it is stupid.” I knew Liam could swim with the fishes. But how did we get him out of the damn tree?

Late at night, I lay awake, heart pounding, waiting for my husband to get home from long work days, and imagined child protective services showing up at our door. Not to claim Liam, but demanding I give some long-over-due attention to his younger brother, Thomas, forced to fend for himself during those agonizing afternoons while I drilled Liam with facts. Sometimes I had trouble taking a deep breath, the weight of Liam’s education so heavy on my chest. Worried too about other children who were suffering in school with no support at home, I started subbing in the classroom and teaching literacy skills to low-income students. I’d glimpsed the need for monumental reform in education, and yet could barely keep Liam afloat. Some nights I’d soothe myself to sleep with twisted fantasies of his middle school vanishing in a cloud of chalk dust.

Because Liam stayed up so late doing homework, he was having trouble waking up the next morning. He often dressed and ate breakfast in the car. Every morning he asked the same question: Why does school have to start so early?

One morning I made the mistake of telling Liam about a story I’d heard on NPR. In response to research findings regarding the circadian rhythms of teenagers, a secondary school in England had shifted its schedule to start later in the morning and end later in the afternoon.

“Why can’t we live in England?” Liam asked. He couldn’t understand why he had to change to fit a system when the system itself needed changing.

“I’m sorry, honey,” I said as I dropped him off at school. Glancing in the rear-view mirror, I noticed Liam’s shoes were untied, his hair unbrushed. The flap of his backpack hung open like the tongue of a broken down dog.

Every morning I felt as if I was sending Liam into battle, and every afternoon that I was retrieving a soldier with massive invisible wounds. I’d ask about his day, and then, dread rising like acid in my throat, ask what he had for homework. Instead of being whisked off to sports practice or piano lessons, I drove Liam to occupational therapy. Then we went home, unloaded the backpack, and dove in.

Eventually, we resorted to what doctors and teachers had been recommending for years: medication. I’d read enough books and talked to enough parents to know that, for some children, medication is salvation. Maybe it would help Liam. “It can take a while to find the right medication at the right dose,” his doctor warned us. Liam tried various meds at various doses. Adderall, Ritalin, Concerta, Strateera, Focalin. When Liam exhibited signs of agitation, the doctor added Zoloft to the mix.

We were patient, but the meds offered no benefit to Liam whatsoever. In fact, they caused horrible side effects like insomnia, weight loss, and finally, tics. Liam started licking his lips so much that the skin around them grew red and raw. He blinked his eyes forcefully, his whole face contorting into a kooky jack o’ lantern. Then he would open his mouth as if he was going to yawn but he never yawned. His mouth just stayed open, sometimes for several seconds. When the tics continued for weeks after we stopped the medication, I took Liam to a pediatric neurologist two hours away.

“When will the tics will go away?” I asked, but she couldn’t say.

That was the moment I knew something had to change. And it wasn’t Liam.

For years I’d been lurking on the website of a small Quaker school in a town two and a half hours away, not far from where my husband and I had grown up and where our extended families still lived. When we finally toured the school, set on 126 wooded acres with streams and nature trails, we instantly felt it was where Liam belonged. While we knew the school couldn’t cure Liam’s problems, its philosophy of tolerance and inclusivity gave us hope that, at the very least, Liam’s problems would not be compounded. Our friends thought we were crazy to leave the town where we’d lived for 14 years, but it felt riskier to stay and push Liam through a system that could not, by design, accommodate his needs or celebrate his strengths. As sad as we were to leave our small-town community, we felt fortunate to have jobs that allowed us to relocate in order to give Liam a chance.

Away from the assembly-line approach to education with its tyranny of grades, Liam flourished. For a while.

The school offered discussion-based classes, and students sat on couches in wood paneled rooms that looked more like cabins than classrooms. Here Liam learned the power of silence and the power of his own convictions. His subtle wit found a warm reception. While differential equations and the nuances of French grammar eluded him, he excelled in the analytical digging required of history, philosophy and literature.

Because he was gaining confidence in his intellect and inspiration from his teachers, he quickly weaned himself from my assistance. A request for extra time to complete a test or a paper was granted without a tangle of red tape. And when Liam was re-evaluated by a new psychologist during his sophomore year, we learned he did not have ADHD after all. He had not grown out of it. This new school had not masked it. He simply never had the disorder.

Liam, the psychologist explained, exhibited a lack of attention when he was in distress. And he was in distress often because he was twice exceptional intellectually gifted, with slow cognitive tempo. The magnitude of discrepancy between Liam’s intelligence and his processing speed was so rare, the doctor said he only saw it in about one kid per year. “If you were a car,” the doctor told Liam, “you’d be a Maserati with two blown tires.” There was no name for this particular disorder, simply called Learning Disorder NOS (Not Otherwise Specified), and sadly no cure. The only way to deal with Liam’s problem was to give him extra time to get his work done, to show what he knows. The psychologist added that, with the right support, Liam would shine in college. But first he had to get through high school. Get through.

Liam performed well until junior year when he registered for eight academic classes, a difficult load even for neurotypical students. The extended time his teachers had so generously granted now merely extended his misery. Liam believed that when given more time to do his work, that work had to be worthy of the extension. No one could convince him to focus his effort in a few classes, and just meet the basic requirements in others. He tried to produce extraordinary work in every class, and the effort nearly destroyed him.

Liam liked to study on the couch in our home office, and the more home- work he was assigned, the farther down on that couch he slid until one day he was completely supine, a posture he maintained for weeks. He could not muster energy to study, and eventually couldn’t get himself off the couch to go to school. Sometimes, when I approached, he growled. Other times I’d find him sound asleep listening to his iPod.

When Liam was younger, I could coax him to forge ahead. But at 16, he was taller than I and 30 pounds heavier. None of the tools in my arsenal worked anymore. Not the proverbial whip. Not the cheerleading pom poms. Not the promise of pizza or Pokémon cards. I’d run out of strategies and incentives just as he’d run out of steam. Liam wanted to drop out of school.

I’d been trapped in an elevator once, and was now overcome by that same desperate, claustrophobic sensation. I retraced our steps, berating myself for doing too much, for doing too little. Making too many sacrifices or sacrificing the wrong things. I felt a raw, aching regret for all the mistakes I made. All the times that I looked at Liam and saw only a problem to solve.

As I found myself swallowed up by regrets, I clung to memories of Liam before he entered school, a happy go lucky kid who once tried to crawl inside our television so he could hug Barney.

During Liam’s graveyard spiral, I was enrolled in a class on Mindfulness Based Stress Reduction, learning to detach myself from the turbulence around me, to rest in the eye of the storm. I began to realize that no matter how deeply I longed for Liam to find the strength to finish high school, the decision was his. I could not undo whatever had caused his learning disability, and I could not take away his suffering. I could only remain supportive, and so I talked to him, matter-of-factly, about his career options. We discussed the GED.

And then I let him go.

It was as if, after having been tied together by a rope, sinking in a river, my weight dragging him down, his weight dragging me – my cutting the rope released him, and we each were then free to rise to the surface.

Rather than dropping out, Liam enrolled in a charter school that specialized in helping kids who, for a variety of reasons, struggled in a traditional school setting. He completed his junior year there, attending classes from 10:00 a.m. to 2:00 p.m. Finally he was at a school that catered to his LD. But by spring, he realized something: Just getting through wasn’t satisfying. Though he was honored for his GPA and passed the state end-of-course tests, he didn’t feel he’d really learned anything. He did learn that he’d rather wrestle with open-ended questions than take multiple choice tests, and missed being engaged with purposeful coursework.

Liam made an appointment with Mike, the Head of his old Quaker school. On a dazzling May day, they walked along a forest trail, and my son—who must’ve felt he had nothing left to lose—told Mike his story. I wish I could’ve been a horse fly on that trail because by the time the walk was over, Liam had not only decided to return there for his senior year but committed himself to being a voice for other LD students who carried the burden of an invisible challenge.

Liam had a successful senior year, not without bumps but smooth as glass compared to junior year. He cobbled together a support system, including a math tutor with a special education degree, and a wise academic coach who kept him from getting stuck. He took the SAT and applied to colleges, but it was clear he was going through the motions of that final, high-stakes push, uncertain of his goals and weary.

When Liam walked across the stage to receive his diploma, so striking in his new suit, I did not feel that swell of pride I imagine other parents do. I felt, instead, tremendous relief and gratitude to that school for taking my son in, brushing him off and ushering him to this day. But I also felt something strange and unexpected, a gnawing fatigue, the kind you feel after a long trip hindered by detours and delays. I was as exhausted as Liam.

Now, while I try to resurrect my career, Liam volunteers at the food bank and is creating a website with a friend. A paid internship starts next month. In the meantime, he’s working on the three R’s: recovering, reflecting, recharging. His first choice college is holding his spot for next fall, and through their disability resource office, he’s been granted accommodations. But lately he’s talking about attending college closer to home, maybe part-time. His dad and I tell him that, whatever he decides, he has our full support.

Still, when confronted by people who ask what he is up to, it’s hard for me to explain Liam’s gap year, his nap year. They don’t understand a thing about what I call Post Traumatic School Disorder. All I see are raised eyebrows, and I have to shake off a twinge of shame that Liam’s not off at college, not where the other kids are.

But where he is right now, at home with us, resting, re-setting, feels right. I haven’t seen Liam this happy since he was four years old. For the first time in years, he’s not weighed down by the stress of homework and deadlines, and I’m not a wreck worrying if he’s keeping up.

I don’t know what his future holds. Sometimes I imagine Liam as a teacher, helping LD students find their way. He’s been encouraged to pursue advocacy in social policy. Two of his teachers marked him for a movie critic.

I get that. The other day, with his dad out of town and his brother at sports practice, Liam and I went to the movies. I loved sharing a bag of popcorn, looking over at him during the funny scenes. The light from the screen shone on his face. He was smiling, and I felt deliriously lucky to have this time with him. Time to enjoy the moment, to enjoy each other. Time to be his mom, not his teacher. Later, on our way home, we laughed, recalling lines from the film, and I marveled at my son’s ability to grasp references, to explain, patiently and eloquently, everything that I’d missed.

Author’s Note: As a writer, I’ve always gravitated toward fiction. Heartbreak, homesickness, even a mad crush on Joaquin Phoenix. It was easier and way more fun to project these feelings onto a protagonist and see how she managed. And yet when I finally felt ready to write about this journey with my son, I found that crafting it as fiction kept me from fully confronting the experience. In this essay, my first, I shed fiction’s protective cloak to expose the challenges of raising a learning disabled child. It’s a plea for education reform as much as it is a tribute to my square-pegged son who, as I write this, is heading out the door to catch the late-night premiere of Zero Dark Thirty.

Rebecca Lanning lives with her family in Durham, North Carolina. As a former editor and advice columnist at Teen magazine, she admits that writing for teenagers in no way prepared her for the humbling experience of raising two of her own. Her work has appeared in a variety of publications including Sunday Reader, Southern Magazine, Haven and Woman’s Own.

Related Link: Flying With No Helicopter in Sight

Brain Doping

Brain Doping

By Valerie Seiling Jacobs

This feature story is from Brain, Child’s Special Issue for Parents of Teenagers, to order the full magazine, click here.

Kid_brain_300dpiIt’s 7:00 a.m. on a chilly Saturday in March—the SAT is due to start in less than an hour. Sam (not his real name), a junior at a New England boarding school, sits alone in his dorm room. Across campus, a few students are already filing into the test center. Sam is almost ready. He’s been studying for months.

There’s just one more thing he needs to do. He reaches into his backpack and retrieves the pill—a single capsule of Adderall. It only cost five bucks. A real bargain.

Mention the word “Adderall,” a drug often prescribed for Attention Deficit Hyperactivity Disorder (ADHD), and you are likely to elicit strong opinions. Add the words “cognitive enhancement” or “adolescent” and you are liable to start a brawl. As soon as I announced that I had taken on this project—that I was trying to figure what parents and teenagers think about these drugs—people began clamoring to stake out their positions.

Take the mother of the 16-year-old boy who was recently diagnosed with ADHD, a condition characterized by impulsivity, inattention, and hyperactivity. To her, Adderall is a godsend, a magic pill that enables her son to sit still for hours and stay focused. “His grades have improved and we’re not fighting about his homework anymore,” she said, before insisting on anonymity to protect her son’s privacy.

Or take Adam (also not his real name), the college student at an Ivy League university who uses it—without a prescription—to cram for exams. To him, Adderall is a great study aid that allows him to “power through” tests and assignments. “It’s like No-Doz,” he said, “only better.” (“Walk through the library during finals and everybody’s got it,” his girlfriend added.) He doesn’t under- stand why it isn’t sold over-the-counter. [Because these stimulants are Schedule II Controlled Substances—possession without a prescription is a felony in most states—no one wanted his or her name in print.]

One law school student estimated that half his peers are using it. A third-year medical student told me that he thinks he’s the only one in his class who’s not using it. One graduate student described how she and her friends use it to party. “We call it taking ‘wings,'” she said.

And then there were the professionals: high-powered Wall Street types (traders were mentioned a lot) who are buying it on the street or quietly asking (read demanding) that their internists write prescriptions. A fiftysomething female banker admitted that she had “borrowed” her son’s medication and used it as an appetite suppressant. I heard of one 70-year-old woman who is using it, with her physician’s encouragement, for the “lift” it gives her.

Most surprising, however, were the high school students—kids like “Sam” who told me how they had used it to take the SATs—again, without a prescription. (Sam estimated that 25% of his boarding school class had used it.) “It definitely helped on the math and reading,” he said. “Not so much on the writing.”

Another teenager described how her classmates would borrow, trade, and sell their ADHD medication (experts call this “diversion”) at her public high school, the going rate ranging from a dollar to twenty dollars a pill, depending on the number of milligrams, the type (regular or extended-release), and the demand. High stress events, like midterms and AP exams, apparently send the price skyrocketing.

To all of these people, Adderall and the other drugs in the ADHD arsenal, including Ritalin, Vyvanse, Concerta, and Focalin, are great drugs that increase focus and boost productivity and performance. Indeed, the axiom that the drugs would not work for those without ADHD has proven to be untrue—though some ADHD experts still cling to the idea that people who experience benefits must have a subclinical case of ADHD.

In fact, current research suggests that people who take the drugs not only feel better, but perform better, though improvement may not be as dramatic in non-ADHD individuals. As Dr. Stephen Donovan, an Assistant Professor of Clinical Psychiatry at Columbia University’s Center for Psychoanalytic Training and Research, explains: “The drugs certainly increase vigilance and focus and allow you to plow ahead where there is no immediate reward. So if you just have to get through something, they can help a ‘normal’ person.” Whether these drugs can actually make you more intelligent, however, is “very doubtful,” says Donovan.

But to some doctors and mental health experts, the widespread use of these drugs, with or without a prescription, is problematic—and especially so for teenagers and young adults. Indeed, recent data suggest that the number of people who are experiencing problems with these drugs is growing. According to a report released by the Substance Abuse and Mental Health Services Administration (SAMHSA) in January 2013, the number of emergency room visits involving ADHD stimulants more than doubled in the five years ending in 2010, with the largest rate of increase (282%) among 18- to 25-year-olds. Of those visits, half involved “nonmedical use” of the drugs, almost three times the comparable rate in 2005.

Evan Flamenbaum, an ADHD specialist and private therapist who works with teens at an intensive outpatient clinic in New York City, has seen first- hand how adolescents can get into trouble with these drugs. These stimulants have been so “integrated into study styles” and so “normalized,” he says, that people don’t appreciate that they are psychoactive drugs.

And this is particularly true of teens, Flamenbaum says, who often have no fear: “They think it’s like taking aspirin, but wind up abusing it: they take too much, or grind it into a powder and take it intra-nasally to get a bigger hit, or mix it with other drugs to make a cocktail.” Thus, while Flamenbaum believes that these stimulants can be extremely beneficial for people with ADHD, he thinks that we need to be really concerned about the potential for abuse, especially when it comes to high school and college students.

Flamenbaum is hardly alone in his worry. One segment of the medical community has been sounding the alarm about these stimulants for years, repeatedly citing the health risks, including addiction. There’s a reason, those folks say, that these drugs are classified with cocaine. The website of the National Institute on Drug Abuse (NIDA), part of the National Institutes of Health, warns that these stimulants have a high potential for abuse, which can lead to a host of problems, including hostility, paranoia, and psychosis. Even without misuse, NIDA’s website cautions that high doses can lead to irregular heartbeats, dangerously high body temperatures, seizures, and heart failure.

In fact, it was the risk of addiction and cardiac complications that finally prompted the Food and Drug Administration to recommend “black box” warnings on these stimulants in 2006. The label on Vyvanse and Adderall, for example, now underscores the risk of abuse, dependence, and sudden death—and specifically states that the drug should be “prescribed or dispensed sparingly.” The warning on Ritalin is slightly less threatening, though still severe, warning of dependence and noting that people with a family history of drug or alcohol abuse should tell their doctors.

The warnings, however, have done little to dampen enthusiasm for the drugs. The sale of ADHD drugs is now a $7.9 billion a year business. An estimated 32 million prescriptions for ADHD drugs are written in the U.S. every year and the number appears to be increasing, especially among older teens. The number of prescriptions for ADHD medication for 10- to 19-year-olds has risen 26% since 2007. And a significant number of adolescents and young adults continue to use ADHD drugs without any medical supervision.

Reliable statistics are difficult to obtain, but the prevalence of non-prescription use among college students and young adults, a group that some have dubbed “Generation Rx,” appears to be significant—and growing. A 2005 study reported that of the 11,000 college students polled, 6.9% admitted to illicit use of the drugs. A 2007 survey conducted by Duke University found that approximately 9% of 3,407 students admitted that they had used ADHD drugs without a prescription while in college. A 2008 informal poll by Nature found that 25% of the 1,400 responders under the age of 25 admitted to using Ritalin for nonmedical reasons. And a 2008 study conducted by researchers at the University of Kentucky found that 34% of the almost 2,000 college students who had been surveyed admitted to having used ADHD meds without a prescription. Other factors, including the presence of sororities or fraternities on campus or the geographic location (e.g., being in the Northeast), can push the percentages even higher.

Moreover, the research shows that the practice has trickled down to high school students. In December 2012, the University of Michigan released the results of its annual “Monitoring the Future Study,” an anonymous survey of 45,000 to 50,000 teens sponsored by NIDA and the National Institutes for Health. The study found that while the use of tobacco, alcohol, and ecstasy was down in 2012, the illicit use of Adderall among twelfth graders was on the rise. According to the study, 7.6% of twelfth graders reported using Adderall without a prescription during the previous year, up from 6.5% in 2011 and 5.4% in 2009. NIDA has labeled this finding an “Area of Concern.”

In addition, while the number of even younger users appears to be holding steady or declining slightly, they are worth noting: 4.5% of tenth graders and 1.7% of eighth graders reported using Adderall without a prescription in the last twelve months. In any event, these statistics make ADHD medication the third most popular illegal substance among eighth, tenth, and twelfth graders—right behind marijuana and narcotics.

What is fueling this increase in prescriptions and illicit use? For those who obtain the drug legally, the increase may be the result of more publicity about ADHD, combined with better detection and diagnosis—though under the current Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), unless the symptoms appeared before the age of seven, the diagnosis may be considered suspect (there is a proposal to push that age limit to twelve in the new DSM-V, which is due out later this year).

But many believe the huge demand is simply the result of a growing desire among adolescents to enhance academic performance, a conclusion supported by the research and my unofficial survey. It’s no secret that the world has become a more competitive place, where getting good grades and doing well on standardized tests can provide a huge advantage in the cutthroat college admissions game. And for those already in college, boosting one’s GPA can help improve the odds of nabbing a much-coveted internship or getting into graduate school. It’s easy to see why students are drawn to these “good-grade” drugs.

Moreover, the demand for these ADHD stimulants—what some call “academic steroids”—is facilitated by the drugs’ easy availability. For those willing to brave arrest (many teenagers seem to be unaware of the potential legal consequences— I spoke to one high school sophomore who was shocked when she was arrested and charged with a felony after being caught with Vyvanse), it does not appear to be difficult to find someone to pro- vide a few pills. And the internet has made things easier: a number of websites now advertise ADHD drugs pursuant to “cyber-prescriptions,” a matter of increasing concern to the Drug Enforcement Agency and federal prosecutors.

For those who decide to go the legal route and obtain a “real” prescription, the process can also be relatively easy. Some doctors rely on a simple checklist or a patient’s self-reported description of symptoms— even though the DSM-IV requires historical and other evidence from a constellation of sources and even though the better practice is to conduct rigorous testing to rule out other mental disorders such as depression, bipolar disease, and oppositional-defiant disorder, which have high co-morbidity rates. All of this, according to Flamenbaum, can take eight or more hours and cost thousands of dollars.

Moreover, the official DSM-IV diagnostic criteria, which include subjective symptoms such as “the patient is often easily distracted” and “the patient is often forgetful in daily activities,” are easy enough for a savvy teenager to fake. One study found that test givers could not distinguish between those who were faking and those who were “real” ADHD patients. As Flamenbaum observes, “It is really not hard to go to a one-hour meeting with a psychiatrist and say all the right things to get the medication—especially if mom and dad are pushing for it.”

Which raises another point. Although people are loath to talk on the record, there is anecdotal evidence that some parents may be pressuring therapists and/or coaching their children to get the diagnosis—and the drugs—as a way to gain a competitive advantage and gain entry into the country’s most elite colleges and universities. (The diagnosis alone may, if properly documented, entitle a student to extra time and other accommodations on the SAT, which are not flagged for admissions officers—a whole other debate.)

With or without parental help, the use of ADHD drugs solely to enhance cognitive functioning, what is sometimes called “brain doping,” is the source of huge controversy. To naysayers, the risks of these drugs outweigh their benefits, at least in people with- out ADHD. In other words, they say, while the side effects of these stimulants might be acceptable for people whose lives are truly impaired by ADHD, the ratio of risk to benefit cannot justify non-medical use in healthy individuals. And this is especially true, they argue, when it comes to adolescent brains, which are still developing. Moreover, opponents argue, the use of these drugs raise “fairness” and ethical questions.

Last year, a commentator in the Journal of Law and Education called for mandatory drug testing in schools to “eliminate the unfairness that currently exists” due to the “super-enhanced focus” and “academic advantage” that the drugs provide. A number of legal journals have noted that the illegitimate use of these drugs may violate basic principles of equality and justice. In 2011, Duke University officially declared that the unauthorized use of prescription medication—and in particular ADHD drugs—would hence- forth constitute “cheating” under its academic honesty policy (possession without a prescription was already a violation of its drug policy). Wesleyan University also considers the use of the drugs (without a prescription) a violation of its honor code and other schools are considering whether to follow suit.

Proponents of these stimulants, on the other hand, argue that the risks have been sensationalized. People have been safely using these amphetamines for decades, they say. And besides, they argue, there’s nothing wrong with wanting to increase one’s academic performance. After all, the argument goes, this isn’t like professional sports, where there are rules that prohibit steroids, blood doping, or other artificial means of enhancement. Unlike in the Olympics, society does not place a value on “natural” academic ability. Who cares if a student took a pill before her SATs? — It’s the end result that matters. And by the way, they ask, don’t we want to maximize everyone’s cognitive capabilities?

So who’s right?

According to most doctors and experts, the three most serious risks associated with ADHD medication are cardiovascular events, psychosis, and addiction. But how many patients actually experience those side effects?

When it comes to cardiac complications, the answer appears to be not many. According to two retrospective studies published in JAMA and The New England Journal of Medicine in 2011, researchers found no increase in the number of heart attacks, sudden cardiac death, or stroke among children or young adults who used ADHD drugs as compared with a matched control group of nonusers. (The researchers did note that due to certain statistical limitations, a doubling of the risk could not be ruled out among the youngest population, but nevertheless concluded that the “absolute magnitude of any increased risk would be low.”)

What these and other studies suggest is that the likelihood of cardiac complications from ADHD drugs has indeed been exaggerated. Dr. Carl Hart, an associate professor of psychology at Columbia University who specializes in the study of the impact of drugs on human behavior and the brain, agrees. In his opinion, the risk of cardiac complications from ADHD drugs is over-blown. “We overstress these risks,” he says, “when the fact is, in young people, it’s not an issue—the likelihood of cardiac risks is quite low.”

Dr. Wilson Compton, a physician and the Director of the Division of Epidemiology, Services and Prevention Research at NIDA, has a similar view. “These drugs are not going to result in major cardiac complications, except in persons with other risk factors,” he says. (And since children, teenagers, and young adults generally have healthy hearts, what researchers sometimes call “healthy-user bias,” those other risk factors are not a big problem when it comes to cardiac complications.)

But Compton’s caveat about other risk factors is worth remembering when it comes to psychosis, another potentially serious side effect. Certain patients, including those with a personal or family history of schizophrenia, depression, anxiety disorders, or bipolar disease, are known to be particularly vulnerable to drug-induced psychosis. For that reason, doctors are advised not to prescribe the drugs for those people or to proceed cautiously. Thus, although the official risk of psychosis may be relatively low (less than 10%), the numbers may not tell the whole story. The statistics may be artificially depressed as a result of the exclusion of susceptible individuals from the patient population. (In fact, in one 2009 study, more than 90% of the patients who experienced psychosis had no relevant history of disease.) The point is that for people who are not properly screened by a physician, the risk of psychosis may be higher than the official numbers indicate.

In addition, the risk of psychosis is known to increase with larger doses and long-term usage. Why this happens is not clear. It could be the pharmacology of the drugs, or it could be the insomnia that often results, one of the most predictable precipitators of psychosis. In Hart’s view, the sleep issue may be the most important public health message when it comes to ADHD drugs. Even for those who only use the drugs sporadically, large doses can disrupt sleep. “I can’t state it any stronger,” he says. “You need to attend to your sleep—and this is especially true for adolescents.”

In sum, the risk of psychosis appears to be low, though assessing one’s true chances of experiencing this side effect may depend on family or personal history, the size of the dose, and the length of the treatment.

And finally, the risk of abuse and addiction.

What makes these drugs so susceptible to abuse? Researchers believe that the answer lies in the drugs’ repeated stimulation of pleasure pathways and their effect on dopamine levels in the brain’s reward centers. Recent studies by Dr. Nora Volkow, the Director of NIDA, and other researchers suggest that the drugs may also impair one’s “inhibition reaction” and disrupt “executive functioning,” which can interfere with a person’s ability to recognize dependence and need for treatment.

But here again, personal and family history can make a difference and the likelihood of experiencing this side effect is difficult to predict. Researchers do not have reliable data on rates of addiction. What researchers do know, however, is that some subset of users will wind up abusing or becoming addicted to these drugs and that a family or personal history of abuse makes addiction more likely.

In addition, the method of delivery of the drug can make a difference. As Compton explains, “All other things being equal, getting it into your brain more quickly makes it more of a ‘rush’ and more addictive.” Thus, snorting or injecting Adderall is more likely to produce an intense high than swallowing a pill. Cocaine abusers report that injecting ADHD drugs can produce the same kind of high as cocaine.

So, assuming that patients are pre-screened and assuming that the drugs are used as prescribed, these drugs probably do not carry a terribly high addictive risk, though withdrawal is always a consideration. The problem, however, is that adolescents don’t always take the drugs as directed. As Compton says: “Sometimes they take more than prescribed, or what’s prescribed for somebody else, so the dosage might be quite high, or they crush them and take them intra-nasally, or even inject them sometimes.”

And for those teens who are using the drugs illicitly, no one is screening for risk factors—or monitoring the dose. According to Compton, this is one of the prime problems with non-medical use: “There’s no one looking over your shoulder.” As he says, “There’s a great propensity to minimize and ignore the symptoms because these drugs feel good—that’s part of the problem around becoming addicted—the surreptitious nature of the onset.”

In addition, the effects of the drugs can be exaggerated by the presence of other substances, including alcohol. There is little data on this subject, but the results of one 2011 study indicate that the combination of alcohol and certain amphetamines can elevate heart rates and boost the “good drug effects” of both drugs (compared to either drug alone). As Hart, who participated in the study, explains, “Mixing amphetamines with alcohol can decrease the disrupting effects of alcohol and allow people to drink longer, while at the same time enhance the euphoria.”

The potential interaction of these drugs with other substances makes their use as a “party drug” (or “wings”) worrisome. Indeed, of the 31,244 ADHD drug-related emergency room visits described in the recent SAMHSA report, 25% involved one other drug (19% involved alcohol), and 38% involved two or more other drugs, suggesting that this is a valid concern.

Another troublesome question when it comes to ADHD drugs and addiction is whether they are a “gateway” to the abuse of other drugs. The answer seems to depend on where you sit.

To those like John Schureman, a therapist who has been treating ADHD patients for three decades and who is active in CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder), a support group that bills itself as “the nation’s leading nonprofit organization serving individuals with ADHD and their families,” the answer is a resounding “no.” In Shureman’s view, the drugs actually help patients avoid drug abuse because they increase “competent agency.” In other words, they increase a child’s ability to control impulsivity and other symptoms of the disorder, which are linked to poor school performance and risky behaviors—including drug use.

Addiction specialists, however, are less sanguine.

Compton and his colleagues at NIDA, for example, believe that the jury is still out as to whether the medications are a risk factor for the onset of drug abuse later in life. While Compton acknowledges that “we’re not seeing an epidemic of drug abuse in the children who were treated with these agents,” he doesn’t think “the protective benefits are as clearcut either.”

Part of the problem may be the data itself. For instance, while the use of ADHD drugs has been correlated with the use of other illicit substances, no one has isolated or proven causation. In other words, did the ADHD medication or the disorder itself cause the addiction? Moreover, when the ADHD drugs are acquired illegally to begin with, there may be additional factors at work. As Hart notes, “Kids who do these things—who are willing to buy Adderall on the street—may be more likely to experiment or break the law anyway.”

So where does that leave us? What do we do when it comes to these drugs and teenagers? The prudent response is to exert caution—and avoid jumping on the ADHD medication bandwagon too quickly. Thus, in milder cases of ADHD, it might be wise to give behavioral therapies a chance first—a strategy that Hart and Compton endorse. But once the decision is made to medicate, the data suggest that even the more serious risks can be managed with proper diagnosis, screening, and monitoring. (Make no mistake: it’s not that these drugs are not dangerous—some subset of the population is likely to get into trouble with them no matter what—but for those whose lives are impaired by ADHD, the benefits appear to outweigh the risks.) Of course, this means that physicians will need to do a better job. But it also means that parents will need to educate themselves about these substances and get more involved. Simple steps like taking control of the medicine bottle and checking that your teenager actually swallows a pill could go a long way.

But what about for people without ADHD, those who want to use these drugs simply to enhance cognitive performance? Given the risks of unsupervised use, it’s almost impossible to argue that the drugs should be sold over-the-counter, though whether they should be classified with cocaine or whether possession should give rise to a felony is open to debate. But should people be permitted to use the drugs as long as they are screened and monitored by a doctor? After all, if the drugs are safe enough for people with ADHD, then why aren’t they safe enough for “normal” folks?

Bioethicists generally have two answers. First, if we allow non-medical use, we will wind up with a two-tiered system: those who can afford the drug and those who can’t. As a number of commentators have noted, however, this is not a terribly compelling argument. We already live in a world that’s pretty unfair—the cost of living in a capitalistic society. Is this really any different from hiring a tutor or paying for an SAT prep course—two things that our system already permits?

To many, the more persuasive argument is the bioethicists’ second claim: that allowing non-medical use will result in coercion. In other words, even people who don’t want to take the drugs will eventually feel that they must take them in order to compete. (One might legitimately ask whether we are already at that point.) The recent debacle in professional cycling is a case in point: How many of Lance Armstrong’s teammates have said that they felt that they had to use blood doping just to level the playing field? It’s not difficult to imagine a world where employers require workers to take the drugs or where students feel compelled to take the drugs in order to compete. And that is a brave new world that should frighten every parent.

Valerie Seiling Jacobs teaches writing at Columbia University where she is also working on an MFA. Her essays have appeared in The Atlantic, The New York Times, and other publications. Before turning to writing, she practiced law for over two decades. She lives with her husband in Westport, Connecticut. You can find her on the web at www.valerieseilingjacobs.com.

This feature story comes from Brain, Child’s Special Issue for Parents of Teens, now in its second printing.

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Why I Didn’t Want to Medicate My Daughter With a Magic Pill

Why I Didn’t Want to Medicate My Daughter With a Magic Pill

By Jenn Amock

0-4From childhood, I’ve been wary of magic.

Our culture and media trained me to be. Look at what happens to the prince in Disney’s Princess and the Frog when he goes to the voodoo man to try to get riches. Or there’s the queen in Rumpelstiltskin who almost has to give up her child in exchange for help landing her man. And even in Snow White, it is the magic potion in the apple that almost kills her.

In all of these stores, the message is clear. Magic comes with a price. You don’t get what you expect in the end. It’s better to be honest, do the hard work, and don’t rely on magic shortcuts to get your end rewards.

So you can see my hesitation with parts of modern medicine, especially pills. I mean, there’s always some side effect when you take medicine. So, if there’s a way to tough it out, change my diet, add more exercise, or get more sleep, I’d rather do that than some kind of chemical intervention.

All this got challenged when my daughter started kindergarten and began having trouble in school.

Over her first three years of school, we watched a pattern emerge. She would start the school year excited and engaged. Then, as the year progressed, the novelty wore off, and the reserves of strength built up over an unstructured summer got worn down, and we would hear from the teachers.

“She’s not completing her work,” they would say. “She doesn’t seem to be progressing. She’s not playing with the other students. She wiggles out of her seat. I just can’t get her to pay attention at all.”

Some of it I could understand. She had very asynchronous development. Intellectually, she was like a kid in a candy store with an unlimited budget. She could recognize every letter of the alphabet at 17 months old and multiply two digit numbers in her head at six years old. She could create stories in her head with the complexity of a multi-level video game at six. Yet her awareness of her body in space (which I have learned is called proprioceptive awareness) was delayed. She could not keep track of where her feet might need to be to keep from tripping over something, she wiggled incessantly, and you could forget dribbling a basketball.

Despite knowing these things, I didn’t know how to understand what the teachers were telling me. It had to be that she was just young. It must just be that the teachers weren’t trying hard enough to engage her. After all, it couldn’t be that something was wrong with her.

But my husband and I didn’t want to rule out a need for some extra help.

So, we went through rounds of specialists: pediatrician, occupational therapist, neuropsychologist, developmental optometrist and finally neurologist. We heard different things, “sensory integration disorder,” “extremely bright and gifted,” “written expression disorder,” “dysgraphia,” and finally “ADHD, predominantly inattentive type.” Through occupational therapy, writing therapy, applied behavioral therapy, in-class intervention, vision therapy, nutritional supplements, a gluten-free diet … we tried almost everything to help her. Except medication.

None of it helped her pay attention in school or do her work any faster.

But still, I did not want to put stimulants into my daughter. “I am NOT putting my child on medication,” I said multiple times.

Was it fear? Was I was afraid of some of the effects that I’d heard other kids go through: the pain of coming off the pills, addiction to stimulants, not knowing how to regulate herself when she’s older, bad drug combinations when she’s a teenager, feeling generally weird and not like herself, losing her wonderful imagination, anxiety, lack of appetite, lack of sleep?

Or was the part about not wanting to take the shortcut? Did I think that it was cheating to do it with the meds? Did I think that she would lose out on learning to self-regulate if I gave her a pill?

Or was it a third thing? Was it denial? Did I just not want to believe that my daughter really couldn’t do it on her own?

I think it was all the above.

But, one particularly difficult day, after a very talented and understanding teacher told me my daughter was having trouble staying present through a four-sentence conversation, I watched my sweet girl struggle to pay enough attention to her math homework to even write the number 6.

And I said, “This is enough.  It’s too hard on her.” I called her neurologist’s office and said, “It’s time to try medication.”

So they gave us pills. They gave us an extended release version of a fast-acting stimulant. The low dose is metabolized over the course of 10 – 12 hours – just long enough for my daughter to do her schoolwork, but not so long that it’s still in her system when she’s trying to sleep. And there’s no need to use it on weekends or vacations.

I skeptically tried it, watching carefully for side effects. All I saw the first day was my wonderful, playful daughter who maybe had an easier time finishing her thoughts when she spoke.

But at school, her teachers told me it was a radical difference. She did her work without redirection. She stopped rolling around on the floor during carpet time. She expressed opinions without being asked. She began socializing with the other kids and working well in a group project. All in the first week.

I am sure that this little pill really isn’t going to solve all her attention problems on its own. We still have to work on some other skills. As she grows, we will have to change dosage and prescriptions. And sometimes she won’t like it as much as she does right now.

But in the meantime, it’s making me rethink my position on magic.

Because magic isn’t always dark and dangerous in those stories. Sometimes there’s good magic that’s used to counteract the bad magic. And that’s always the magic that comes from a place deep inside of us. A place that comes from the most true form of love.

And I’m hoping that this turns out to be that kind of magic pill.

Jenn Amock is a former marketing professional turned Mom and freelance writer.  She lives in Texas and has two daughters.