Almost Unendurable Beauty

Disregarding the hope for normalcy in order to embrace the twice exceptional.

Sunflower eye

I wonder what jobs there are for a person with no real sense of time. Even if she means well, every minor obstacle in Jade's path holds the potential to send her skidding sideways.

Photo by Fotolia/bergamont

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The plastic prescription vial contains 30 doses. I press the cap down, twist it counterclockwise, and shake a cylindrical pill into my hand. It is an ugly gray, like dryer lint, like newly poured concrete, like a bullet. I know my daughter will notice this.

I set the pill on the kitchen table next to her glass of mango juice, then reconsider and pick it up. Better to hand it to her, make sure I see her swallow it.

“Breakfast!” I yell up the stairs for the third time. Jade is 13 years old, but getting her to the table—or to school, or to the orthodontist, or to a birthday party—still requires as much patience and persistence as it did when she was small. She has always been like this. It’s not her fault, I remind myself.

Jade wakes gradually, reluctant to let go of her dreams. This morning she has already fallen back to sleep several times. It’s Sunday, so she’ll stay in bed until the afternoon if I don’t keep trying. I enter her room, kiss her warm forehead, and try to rouse her. “Get up, go to the bathroom, get dressed,” I say, reciting the same instructions she’s heard since preschool. Ten minutes later she’s still under the covers. Each time I repeat my list, I’m a little more anxious, a little more shrill. Lots of parents go through this with teenagers, right?

Our 10-year-old, Kyle, is already up, showered, dressed, and saturating his pancakes with maple syrup. He whips through his morning routine as if trying to get to the next level in a video game. I have to wonder whether he’s hard-wired this way or if it’s because he’s lived his whole life with a slow-motion sister, and he’s just trying to reduce family tension.

My husband, Roger, is busy charting his day in our home office. He has scheduled every errand and call he’ll make today to drum up photography work. We’re all moving forward—except Jade. We can’t slow our momentum to accommodate her, but of course we do, all the time.

I don’t see my daughter at the bottom of the stairs until I swing around and bump my cheek on her shoulder. “Good morning, little Mommy!” she chirps, leaning down to hug me with her skinny arms. Her dark corkscrew hair springs in every direction, a mix of Betty Boop and Einstein. The legs of her fleece candy-cane-patterned pajamas rise six inches above her pine-sapling ankles. As she ambles toward the kitchen table, her loose-limbed gait gives the impression of someone striding on circus stilts, head in the clouds. I should have named her Luna or Venus to match her spacey nature.

“Your pancakes and scrambled eggs are cold,” I say.

“OK,” she answers, unbothered. She doesn’t seem to worry about anything, a trait that makes me both envious and annoyed. I wouldn’t mind if she shared more of the urgency that keeps the rest of us on track.

“Here, take this with your breakfast,” I say, casually dropping the gray capsule into her hand as if it were a Tic Tac. “Go ahead; swallow it down with your juice.”

She looks at it sadly. “It’s so very tragic looking.”

“Yes,” I say, “but inside it’s filled with rainbows!”

She makes a joke about a viral video we’ve both watched in which a man sobs uncontrollably at the spectacle of a double rainbow. “It’s sooooo beautiful,” she says, imitating him, and with that I am forgiven—for coercing her to take drugs, for not knowing what else to do.

Jade places the pill on her tongue and washes it down with juice, wincing dramatically with the first gulp.

My husband and I are hoping this medication will help her focus, because everything else we’ve tried hasn’t. She rarely remembers to write down school assignments, do her homework, turn in the work she does manage to do, or pace herself on long projects. Our daughter is so wrapped up in the fascinating world inside her head that she forgets to function out here.

When I was 13, I was a relentless people pleaser—a doughy, fearful child, skulking self-consciously through adolescence. I wanted badly to have some remarkable talent that would garner attention, but at the same time I also hoped to skirt by unnoticed. I almost never got into trouble, maintaining a B average. Occasionally I’d catch a heady whiff of some elusive realm outside my reach, but I understood that my own life would be more staid.

My daughter is not me. She is completely comfortable with herself and simply does not relate to the world the way most people do. I try to imagine what it’s like in her head. Is she carried by endless waves of discovery, one rocking into another until she drifts so far out to sea that the shoreline has disappeared? Will medication limit her thought expeditions, tamp down her creative spark? Maybe there’s something else going on with my daughter that I just haven’t pinpointed yet. She could turn out to make great innovations in physics, like Marie Curie, or be a mathematical visionary, like Ada Lovelace. Or perhaps she’ll end up an eccentric loner, living by herself in a cluttered house. I wonder what jobs there are for a person with no real sense of time. Even if she means well, every minor obstacle in Jade’s path holds the potential to send her skidding sideways. God forbid that, in the middle of class, something smells weird, or her shirt tag is poking her neck, or she remembers last night’s flying dream and needs to capture it on paper right this very minute.

 

When I imagine my daughter’s inner life, I draw on my past drug experiences. Lysergic acid diethylamide sounds like a weed-abatement chemical, and maybe that’s sort of what LSD is. It can expunge the ugliness from your world so that all you see is almost unendurable beauty. The first time I tried it was in 1981. I was 20 years old, sitting in third-tier seats at a Rolling Stones concert with my boyfriend. He pointed to a small square of paper on his denim-covered knee, and I mistook it for confetti and brushed it away. The tab fluttered to the shoelace of his dirty white sneaker.

“That’s acid,” he whispered, retrieving it carefully and offering me the paper flake on his index finger.

“What do I do with it?” I asked.

“Put it on your tongue.”

Apprehensive, I ripped the tab in two and placed half in my mouth. After ten minutes I didn’t feel anything, so I took the rest. We sat in our seats miles above a brightly colored stage, watching the opening band and inhaling the sweet, ferny spirals of pot smoke circulating throughout the arena. A half-hour later, popping flares brought on the Stones—and my acid trip.

I had read the frightening anti-drug novel Go Ask Alice and heard about bad trips from friends who’d hallucinated that people’s faces were melting, but I experienced the opposite. The glorious spectacle of a gigantic electric guitar, the pulsing downbeat, and Mick Jagger’s athletic gyrations delivered one clear and simple message: Everything is all right.

My search for God was over. The whole damn universe was God—me, the electricity, Mick, the sunlight, the metal scaffolding, the swaying stadium, my boyfriend’s white sneakers, the absolute truth of the words reverberating out of those blinking red lips: “Time is on my side. Yes it is.”

Several months later, three college friends and I took LSD and hiked into a local canyon.

Together we waded into a cool stream. The sun sparkled in the waist-high water, and cumulus clouds like broad paint strokes drifted across a vibrating blue sky. Trees like Old World cathedrals echoed with some ancient tribal language. Birds rang tiny triangles in the manzanitas, and invisible insects buzzed amid shifting poppy fields. More laughter, more utter certainty about how extraordinary the universe was.

After I came down, I tried to hold on to the perfect green-gold leaves, the harmonious swirling joy in the air, and for a while I saw beauty in everything and understood that we are all one. But a sluggish reentry is the inevitable drawback to every trip. It’s like opening your front door after a long vacation and inhaling the familiar dank scents of your home: oiled oak cabinets, bathroom cleanser, the chicken soup you had the night before you left. The sameness is comforting, but you also don’t want to let go of your newfound connection to that other place.

I have no way of knowing, of course, what it’s really like to be my daughter, but she seems to have a vivid and profound understanding of how the world works that’s similar to the insights I had during those trips. Unencumbered by pedestrian concerns, she sees art in everything. She also forgets to eat, put laundry away, or do her homework. I try to balance my attempts to honor who she is with my responsibility to help her thrive in society the way it is. I’m afraid that if I don’t constantly prod her, she’ll miss out on opportunities available to students who follow the rules, manage their time well, and get good grades.

This morning she’s finally eating her eggs. “Please pass the sodium chloride,” she says. Kyle hands her the salt shaker, and Jade launches into a performance of a song called “The Elements,” reciting the periodic table in rapid fire. Her performance segues into a detailed explanation of the Coriolis effect, which, as far as I can tell, has nothing to do with salt. As she speaks, Jade models the earth’s rotation with her elastic hands, explaining how its energy could be harnessed and used as a power source. She’s silly and entertaining to watch, like a Muppet (though she lost me somewhere between cadmium and lithium). I am at once overwhelmed with love for this child and perplexed by how her father and I could have created her. Like a gymnast she brings her routine full circle back to salt, sticking the landing with “Actually the ocean has 3.5 percent salinity.”

Jade’s intelligence was rewarded by her elementary-school teachers. She was paired with non-native English speakers to help them learn in class. She got 100 percent on a statewide standardized test, and we watched her blossom in lead roles at school plays due both to her ability to memorize her lines and to her lack of self-consciousness. But her teachers also described her as dreamy and slow to finish her work. When I arrived to pick her up, she was never ready. The campus cleared out while she was still packing her notebooks and gathering her lunchbox and jacket.

Jade’s second-grade teacher, Ms. C., once scheduled a meeting with me to discuss Jade’s missing story assignment. “All the other kids have been done for more than a week,” Ms. C. explained.

I asked if I could see an example of the assignment, and Ms. C. pulled out a folder with the other students’ completed work. Each of their stories filled both sides of a lined sheet of paper. I asked where Jade kept her unfinished work, and Ms. C. opened Jade’s messy desk and fished around inside. When she found the assignment, her cheeks went pink. It was 16 pages long— and up to Chapter 5.

“I guess I need to be more explicit with her,” Ms. C. said with a laugh.

At home Jade’s eyes brightened when I asked about her story. It was set in another solar system, she explained, detailing the fictitious planets and their unique attributes and inhabitants.

“That’s amazing, honey,” I said. But I also told her it was important that she turn in her assignments on time.

Jade’s expression darkened. “Why? I’m not done.”

“That’s just how school works,” I said.

Over the years we’ve had many variations on this conversation. Roger and I even sent her to a Montessori school for a while, but her performance was no better.

As Jade approached her elementary-school graduation, her fifth-grade teacher expressed concern that she would not be able to function in middle school, where students were expected to be self-sufficient and organized. She’d need to keep an agenda and change classrooms and teachers every hour. And she would have to navigate all of this independently. Worried she couldn’t handle it, I contacted the family pediatrician, who met with Jade, asked us a series of questions, sent a standard assessment form to her teacher, and then diagnosed my daughter with attention-deficit disorder. She also prescribed a drug called Concerta.

Jade listened with patience as the doctor explained that she had a medical condition, one a lot of kids have. The doctor’s pitch for Concerta was worthy of a pharmaceutical rep. She wore a stegosaurus pin clipped to her stethoscope and nodded her head slowly as she talked, encouraging my 10-year-old daughter to agree. Jade’s face gave nothing away as she absorbed what the pediatrician was telling her.

“What do you think?” I asked Jade when we got back to the car. “Should we try Concerta?”

“Adults always underestimate children,” she said.

I suggested we just give the medicine a chance to work.

“I’ll do better,” Jade assured me, as if it were a matter of willpower.

“This isn’t a punishment, Jade. You might actually like feeling more in control.” My compassion was quickly degenerating into frustration. The responsibility to keep her performing well in school weighed on me, and I was tired of arguing with both her and Roger, who had announced in front of Jade that he didn’t believe in medicating children, making me feel like a sleazy pusher.

For a week after the doctor visit, Jade did seem to follow through on her schoolwork more diligently. Then she fell behind again. Roger and I would ramp up our efforts to help her in one subject, but another would inevitably slip. It was like academic Whac-A-Mole. Still, we did not fill the prescription. We tried diet and behavior modification, bedtime adjustments, organizational tricks, and punishment and reward systems. I encouraged her to eat protein whenever she seemed to drag and gave her some time outdoors before she started her homework. Roger, on the other hand, would insist that Jade sit at the kitchen table as soon as she got home from school and not get up until her assignments were complete. Sometimes she’d dive in, but other times she’d just angrily stare at the light refracted in a glass of water. “I’m tired,” she’d complain. “I have no time to just be.”

“Jade, just focus!” I’d say, thinking she was being stubborn. I might as well have yelled at her to grow a foot taller.

 

Now, with Jade in eighth grade and getting ready to enter high school, I’ve convinced her to give Concerta a try. She finishes her eggs and starts to head upstairs, but I ask her to stay in the kitchen for a while. “I want you close to me this morning.”

“I’m just going to my room to get my colored pencils,” she says.

When Jade returns, I suggest she do some math homework. She moans, but she knows she’s way behind and so digs through her backpack for her textbook. Mathematics was fun for her until this year. Her humorless algebra teacher, Mrs. Y., assigns hours of nightly busywork and grades students based on organization. Mrs. Y. periodically grips the students’ binders by their plastic spines and shakes them violently to see whether loose papers fall out. I’m sure she gets a thrill every time a grid-lined sheet flutters to the linoleum. Most of Jade’s middle-school teachers have been flexible and understanding, but my child makes no sense to this woman. Jade looks at complex math problems and then withdraws briefly into her private thought bubble, where—as she describes it—“a jumble of colors rearrange to form an image.” Her answers are correct, but you have to show your work to get the grade. Naturally Jade has become Mrs. Y.’s favorite target for public ridicule. “You think you’re so special?” she snaps when my daughter has folded her paper into eight squares instead of four.

Some of Jade’s homework pages have been crafted into origami cranes and ninja stars that lie scattered across her bedroom carpet. Her room is a “potential art” warehouse. She stockpiles craft supplies in disordered towers that reach for the ceiling but ultimately collapse into disarray. Everything must be visible to her: shiny scraps of foil, gum wrappers, found bits of metal, bottle caps, rocks, seashells, seedpods, erasers.

I’ve asked her to throw some of it away and even offered to help her get organized, but she takes this as an insult. “I know where everything is,” she’ll claim.

“Where’s your reading log?” I’ll ask. “Where’s your warm jacket?” I’ll compare her room to a house on the reality TV show Hoarders. It’s a mean thing to say, but I’m honestly afraid she’ll end up like the people on the program: alone and unable to function. I feel like I have to shake her up to make a point.

Recently I stopped by the dean of students’ office at the middle school to have a chat. He’s an affable guy, well loved by the student body, but he thinks Jade’s just not trying hard enough to make good grades.

“Have you seen that green notebook she carries?” he asks. “If she’s got time for that, she’s got time to do her schoolwork.”

He’s referring to the story Jade is writing about a country in a different sphere where people have magical abilities based on their personalities. Every word of it is written backward, so it can be read only in a mirror. We both shake our heads: if she’d just apply that same time and energy to her studies . . .

I try to explain that she has these thoughts in her head all the time and it’s like she has to get them out or else she can’t think about anything else. I’m aware that I’m making excuses for my underperforming kid, but isn’t writing a backward story far more interesting and valuable than copying vocabulary definitions for words she already knows? She’s doing it, she tells me, because Leonardo da Vinci wrote that way in his notebooks, and she wants to challenge her brain. Also, she doesn’t want anyone reading over her shoulder.

The dean gets it, but there’s nothing he can offer. Proficiency in writing novels in reverse script isn’t an eighth-grade requirement. Jade doesn’t qualify for special assistance because she meets the minimum grade-level standards. I’m at a loss. I can’t quit working to home-school my daughter (even if I could keep up with her), and she likes being in school with her friends. The dean suggests I look into private counselors.

I locate a psychologist who specializes in gifted kids. Roger and I take Jade to meet with him. While I explain our concerns, Jade sits bouncing her legs, fixated on the floor of his office.

“There are 96 triangles,” she tells us, and I notice the geometric pattern in the rug for the first time. I don’t have the patience to figure out if she’s right.

Roger and I go to the waiting room while the psychologist talks to Jade alone. When he sends her out, she’s bubbly. Then it’s our turn to speak with him.

“She’s really a special kid,” he tells us, explaining that she’s what’s called “twice exceptional”—profoundly gifted, but with a learning disability. Somehow this feels like a relief: At last there’s someone who understands. “Kids like her struggle in school,” he continues. “Where they are intellectually doesn’t match up with where they are developmentally. Plus her executive functions aren’t there yet.”

Executive functions? He lists them: organizing, planning, prioritizing, scheduling. The area of the brain that governs these activities isn’t fully developed until the age of 25. Maybe Jade’s will develop enough during high school for her to manage; maybe not.

I ask if he thinks my daughter has ADD.

“Yes, definitely.” That’s my twice-exceptional daughter’s other exception. The psychologist draws a picture of a bell curve and points to the large hump in the center, where most kids are. The lowest-functioning kids are at the far left, he says, where the line tapers off at the edge of the paper. I picture some of the children a friend of mine works with in special-education classes. “Just to the right of the large middle,” he tells us, “are the high-functioning, organized students who generally shine in school. And here is where Jade falls, way up here.” He points to the almost flat line on the far right—as far from the middle as the lowest-functioning kids, but in the opposite direction. “Why would we expect her to perform like the kids in the middle when she’s as different from them as the ones over here with severe disabilities?”

My eyes blur with tears, and I ask what we should do.

He recommends we try the medication and also get her whatever assistance we can from the school. Maybe modified homework or a quiet room for tests will help her. “I’ll write you a letter.”

He assures us that our daughter isn’t being lazy and warns that twice-exceptional kids can become depressed and self-critical as they get older. “Keep encouraging her strengths and bolstering her weaknesses.”

His simple advice is more help than we’ve ever received. Although I don’t like labels, this one makes sense.

As we’re about to leave, the psychologist echoes what the vice-principal and education specialist and Jade’s English teacher have all said in the past: “You know, school’s not for everyone.” It’s hard to hear. “Not everyone’s track is so linear,” he adds. “Her road to success might be curvy.” When he says this, I picture a lovely, rambling path that is hers alone, and the tension inside me eases.
My daughter knows I worry about her. She understands that it’s my job. “You’re a good mommy,” she tells me when she sees my creased brow. Then she stares deep into my eyes: “Your irises look like sunflowers.”


Jocelyn Evie is the pseudonym of a freelance editor and writer living in California. Reprinted from The Sun (May 2015), an ad-free monthly magazine that uses words and photographs to invoke the splendor and heartache of being human.