People at the office ask innocently enough. Say you are standing in the lobby waiting for an elevator. You are assembled there, a bunch of you, after the finance committee or whatever, in your uncomfortable shoes, budget spreadsheets stuffed inside your zippered leather portfolios, and you start to consider how best to cut your department’s operating expenses by the required 5 percent, and you stare straight ahead waiting for the ding and the doors to open. To pass the time the person next to you eventually turns to ask politely, “So. How’s the family?” and you immediately feel that quickening tightness around your lungs—that gentle, uncomfortable squeeze—and you think, Here we go.
You take a breath, a deeper breath than is normal for this elevator lobby. You smile. You nod your head, perhaps a little too vigorously. All is well in my world, is what you hope to convey. But what you think is Please can we not do the parenting check-in thing?
And yet as you push the elevator’s Up button (which is already lit), you turn toward your colleague and immediately launch into an interrogation about his family, his offspring, everything in the world you can think to ask. You remember he has a daughter, and you zero in on her. She graduates this year, right? How were her SAT scores? To which colleges did she apply? Which one is her first choice? What percentage of applicants is accepted there, does he know? Is your colleague ready to witness the final upward stretching of her wings?
People love being interviewed, which is what makes this strategy so effective. But occasionally it fails. Occasionally, someone will manage to parry with one quick question while you are pausing for oxygen.
Today, your colleague asks, “How’s your daughter?” You feel a wave of weariness. But you nod quickly. You smile brightly. You say your daughter’s name. You say she’s eighteen. You glance above the double doors to see where the elevator is now, how many more floors to go.
“Eighteen, already? Wow.” He will probably ask next where she goes to school.
He does. You push the elevator’s Up button again and make yourself answer matter-of-factly, cheerfully, without hesitation, “A small high school for kids with neurocognitive disorders.”
Then you step back.
Often—maybe 60 percent of the time—the response to this is, “Oh.” Because neurocognitive sounds so messy and not fixable, and it tends to thwart the natural momentum and rhythm of congenial discourse. For people to inquire further, something special is required, something like a straight—yet supple—spine. The remaining 40 percent, those with straight, supple spines, might ask what neurocognitive means. Is that some kind of learning disability, like dyslexia?
Your colleague today surprises you; perhaps, after all, he is a superior supple-spine person. At this point you elaborate (briefly, very briefly), that your daughter’s school is for kids with one of several brain disorders on the autism spectrum. But there is that word autism, and it sounds even scarier than neurocognitive, and often after you use it, you can move directly on to weekend plans and the weather.
“Ah,” your colleague is nodding heartily now. He checks the status of the elevator. He tries to decide if that Up button needs further pressing. “So,” he asks finally, “any plans for the weekend?”
But a small percentage—maybe 10 percent—won’t be content to stop there. These are the people who will ask how your daughter came to have this disorder. These are the people into whose faces you will look, and if you detect a certain quiet in their eyes, you will consider suspending your conversational acrobatics and saying, again without diving into detail, that your daughter had a rough start. You may say (very lightly, very conversationally) that she arrived twelve weeks early, one of those micro-preemies who weighed not quite two pounds.
“But is she okay now?” the optimists always want to know. “Except for the learning disability?” How they hope this will be one of those triumph-over-all-odds, happy-ending stories! Here you have another turning point. You will bob your head around in what is mostly a yes, with a tiny suggestion of not exactly, because by now you are unwilling to minimize, unwilling to construct the simplified, satisfying conclusion. You could, and you don’t know why, but now you won’t. Instead, you reward their quiet eyes with that little head-bobbing triangle of truth. Not exactly.
You have no need to elaborate. If you can wrap it up comfortably now, and usually you can, you will say something wry and inclusive, something to chase away the small cloud of misfortune, like, “Parenting...always so full of surprises.”
If yet more is required, which is rare, you will say to the remaining 2 percent, those few with supple spines and quiet eyes and something more-a combination of gravitas and grace, maybe-that your daughter has health issues still, but she is also an incredibly brave and wonderful kid. You smile reassuringly. You thank them for asking. By then, surely, your elevator will have arrived.
But what about the story known by only a tiny percentage-a very privileged few? When your daughter was born you could hold her entire body in the palm of one hand.
Her head was the size of a small nectarine.
She was five months old before you could bring her home from the hospital.
She wears hearing aids.
She adores musicals.
She is a startling mimic.
She has epilepsy and asthma.
She has long, beautiful blonde hair. She is always asking to dye it black.
She used to have a tumor the size of a large grape behind one eyeball that made it look, until she was about four, like that eye was growing out of her cheek. The tumor, before it was removed, caused the bones on one side of her face to grow differently so her face is—and will always be—asymmetrical, like a cubist painting.
Her teeth don’t line up, so it is exhausting for her to chew. To fix this problem her jaw must be taken apart and reassembled.
She is heart-breakingly earnest.
Her laugh, which is the funniest laugh you have ever heard in your life, is famous in your community. Once, at the movies, she burst into her staccato hysterics, and, you learned later, friends sitting elsewhere in the dark theater turned to each other and whispered her name.
Her eyes are a warm brown.
Her skin is very pale.
There are large blue veins running up the inside of her left arm, fanning out from her shoulder across her small, bony chest.
Her hands are tiny, but her fingers are very long. She has nice fingernails when she doesn’t chew her cuticles.
The simplest math is impossible for her brain to grasp. It takes about thirty seconds, with her eyes squeezed closed and her lips moving silently and her lovely fingers outstretched, to figure twenty minus ten.
She has breasts.
She is indifferent to most food (she is four-foot-nine and weighs seventy-eight pounds; at eighteen, she has reached her adult size). Oddly, she adores clams and escargot.
For her, impassive faces and figurative language and certain tones of voice are indecipherable. “Today a boy at school said I looked hot. Was that flirting or was that about temperature?” Or, “Right after Mr. Enholm yells ‘Quiet!’ in math class, he smiles at us. Is he angry? Or is he joking? Or is he joking and angry?”
She may not know how others are feeling, but she always knows precisely how she is feeling, and she usually knows precisely why. “Please don’t give me unpleasant advice before school, Mom. It makes me feel mixed up and the opposite of cheerful and it ruins my whole day.”
She has recently been experimenting with ferocity. “Excuse me, Dad!” She leans forward at the dinner table, glaring, pointing her forefinger into his face. “Excuse me. You interrupted me. Which was inappropriate because I am the one who is talking right now. Not you.” It is hard not to find this funny.
She takes enormous pleasure in recounting, repeatedly and in word-perfect dialogue, long scenes from movies. She is desperate to relive these scenes out loud, and she is often wild-eyed with the inability to keep herself from sharing them...again...and again. It seems impossible for her to remember, or it seems not to matter, that everyone finds this tedious.
Any mention of the word annoying in relation to her behavior triggers in her a deep and frustrated despair.
Because she can be someone else for an entire day, she can’t wait for Halloween. She begins planning her next costume in early November, and every year decides she will dress up for only one more year. She said this at fifteen...sixteen...seventeen. After next year, she says, she will be too old and will stop for sure. She types so fast her fingers are a blur on the keyboard, and she aches for a boyfriend and worries that no one will ever really love her that way, and she lies badly and infrequently, and once she sees a word on the page, she will never, ever misspell it, and she loves to snuggle, and she loves spending time alone with her laptop in her room (which she keeps perfectly clean and orderly and just so), and she loves Friday nights when she is free from school and free from chores and free from the hard reality of being her out in the world, and she devotes herself, endlessly, to a large and ever-changing cast of instant-message, role-playing, virtual friends whom she adores, and she wishes she didn’t have to buy her shoes from the kids’ department, and she loves listening to movie soundtracks over and over again, and she loves dogs, and she is, in her heroic little body, a huge presence in your hurting and grateful heart, and for 100 percent of her eighteen years, she has been your biggest and most complicated blessing.
These are not things you can say while you wait for an elevator.
Lesley Quinn has not one single impressive academic credential to advance, except hat she was once the proud recipient of the Montera Junior High School English Student of the Year Award. But she also published a travel essay in the New York Times, an accomplishment she artfully manages to slip into casual conversation with new acquaintances and appliance repair persons. She lives with her husband and daughter in Berkeley, California.