Harmony Page 5

  “I don’t get it,” Candy says. She’s already holding a paintbrush and a tiny drop of paint has fallen onto her T-shirt, right on the picture of the glass of milk. “How can air-conditioning make you fat?”

  • • •

  We paint for a while without saying very much, and slowly, the room gets a tiny bit cooler. I don’t have a watch or a cell phone, so I don’t know what time it is, but it feels like this day has been going on for a very long time. It’s weird: things that happened this morning, like Tilly arguing with Ryan Gough, or finding the dead rodent-thing in the shower, seem further away in the past than going swimming with Tilly and my mom and dad in the hotel pool yesterday. I start to freak out a little every time I think too much about being here—so is this what our life is like now? Is every day going to feel this long? So instead, I make up an email in my head to send to my friend Ana. There’s no TV and no DVDs and no iPhones and no computers. I bet if there was a blackout, nobody would even notice . . . Scott thinks he’s like that Man vs. Wild guy or something. If he tries to make us drink pee, I’m calling you to get your butt up here and rescue me . . . Tilly’s on the dinner crew tonight, so if you don’t hear from me, it probably means I’ve been poisoned. And then I mentally erase that last part, almost before I’m done making it up. It’s hard to know how to talk about Tilly to my friends; I can make fun of her and complain about her, but I don’t want anyone else to.

  I keep glancing over at Candy, trying to figure out if we’re going to be friends. She’s skinny and mostly pretty, with the type of straight hair that looks like it probably always stays in the right place, even though people with that kind of hair always say that there’s nothing they can do with it. She has pierced ears, and she’s wearing little yellow emoji earrings—one smiling, the other sticking out its tongue.

  At first, I can’t tell if she’s friendly or not, but she smiles when I say I like her earrings, and then when her mom leaves to go to the bathroom, and my dad’s not looking, she gives me a piece of gum from a pack that she snuck in. “Enjoy it while it lasts,” she whispers. We both chew slowly and quietly, but after a couple of minutes, the room smells like fake watermelon, and there’s not much we can do about that. My dad gives me a look like he knows exactly what I’m up to, but he doesn’t say anything, and he doesn’t make us spit it out.

  Candy’s thirteen, so you’d think she’d be more likely to be Tilly’s friend than mine, but things don’t always work right with Tilly and making friends. So maybe she’ll be my friend instead. Or both of us, or neither, though there aren’t enough kids here for anyone to be too picky about who they get along with.

  Finally, after painting for about ten hours, I tell Ana in my head, my dad finally said it was time to stop, so we’re going back to our gross cabin to put on our bathing suits. I hope Tilly remembered to shave her legs in the shower this morning, but I wouldn’t bet on it. And then I erase that part, too.

  chapter 6

  Alexandra

  September 2007: Washington, DC

  The first time you hear the name “Scott Bean,” you are sitting in a booth at Bamboo Garden, and your daughter is knocking her head gently against the floor. A moment ago, you were all seated more or less normally, though Tilly was fidgeting wildly and Iris was banging a spoon against her glass. Then, like she’s been zapped by an electric prod, Tilly’s out of her seat and kneeling on the ground. She moves through the motions quickly, twisting to touch the necessary parts to the tiles: first the left side, just above the temple, then the same spot on the right. Then she stands and bends herself double, like she’s about to do a somersault, and touches the ground with the top of her skull, looking at the world upside down and through her legs. The whole thing takes maybe four seconds. Then she slides back into the booth and starts teasing her sister about having been born in the Year of the Snake.

  You and Josh sip at your water resolutely, not checking to see if any of the other customers are looking at you; Iris doodles on her place mat, apparently oblivious. The waitress approaches, smiling brightly, and Tilly launches into a well-argued critique of the menu. She’s been reading about different Chinese regional cuisines, and she has a lot of points to make about the dishes the restaurant could be offering.

  “Tilly,” you say, trying to rein her in, but it’s more so that you don’t appear to be condoning the steamroller monologue. You know there isn’t much chance you’re going to get her to stop. The waitress listens, smiles indulgently, and then—when it becomes clear that Tilly is not about to stop talking anytime soon—she just raises her voice and talks over her to ask if you’d like anything to drink.

  You’ve been wavering about whether or not to order a beer, noting that there are still several hours to go until the girls’ bedtime, and knowing that you’re more likely to stay on an even keel if you keep your head clear. But you’ve just watched your daughter rub her head on the floor of a Chinese restaurant, and the question is no longer really a question. You order a Tsingtao.

  Your reach for your phone in your pocket, before remembering that it’s out of power. You feel unaccountably lost; there’s no possibility of escape, no chance to set it glowing in your lap, so you can check your email or look in for a few minutes on Facebook. You’re stuck in the here and now, nowhere to go but the present. Enforced Zen.

  You’d like to make eye contact with Josh, share a moment of harried-parent commiseration, but you’re feeling a little disconnected from him today. It happens; you figure it’s normal in a marriage. It reminds you of a Sesame Street skit, one from when you were a kid, the one where Grover illustrates the concepts of “near” and “far” by running back and forth between the camera and a distant spot in the pleasant mauve background. Sometimes you feel like you and Josh are standing together, firmly united; other times (like today) you feel like you’re shouting across an empty purple space.

  He’s a better dad than you are a mom. You don’t know for sure that this is true from any objective standpoint, but it’s one of your fundamental beliefs about your marriage. He’s more patient, more willing to get down on the floor and follow any flight of fancy the kids might come up with. More secure, too, more confident that he’s taking the right path. Even now, in your eighth year of parenting, you often feel completely at sea. You learn a lot from watching him, though you bristle when he makes suggestions about your interactions with the kids. You may not always feel like you know what you’re doing, but you don’t want to be told that you’re doing it wrong.

  Iris has slipped under the table now, and Tilly is talking quietly to herself and chewing on a thick hank of hair. This is behavior that emerges every time her hair grows below the length of her chin; you’ve thought about keeping it shorter, but she desperately hates haircuts. The last time your mother visited, she made a number of attempts to curb the habit: gum, she thought, might take care of the need for oral input. That ended predictably, with a pink blob swinging back and forth in a tuft of hair. Tilly sobbed, panic-stricken, for forty-five minutes while you rubbed her back and searched the Internet for tips about freezing the gum with ice cubes and lifting it off with peanut butter. After that, your mother gave up the crusade.

  “Come on, Iris,” you say, reaching under the table and finding an arm. “Restaurant behavior.”

  You reach for your phone again, automatically, then remember again. You’ve recently discovered in yourself a vast capacity for hiding. You know a million ways to avoid being here, sitting in a restaurant with your husband and children. (Here comes your beer, dripping with condensation; that’s one of them.)

  At home on your laptop or in the car-pool line with your phone, you’re desperate to find something to fix your attention on. You want to be absorbed, in an almost literal sense. You’re thinking about paper towels here—or no, you’re thinking about commercials for paper towels. You’re thinking about that mysterious blue fluid that people are always spilling and pouring on counters in pap
er towel commercials. You start with a puddle, an unnameable shape with ever-changing edges. But once the towel hits it—dropped flat on top, in a way no human being has ever actually used a paper towel—it becomes something new. A fixed stain. The towel has put a stop to its unpredictable movements, constrained its messy edges. Made everything flat and manageable and neat.

  You find yourself idly staring at a bulletin board hanging by the door, covered with all the usual neighborhood flyers. You can’t read much of the fine print from here, but it looks like someone’s offering guitar lessons, someone else is selling a bed. And toward the bottom, there’s a pale green sheet of paper with the heading “Do You Have a Challenging Kid?”

  Back here at the table, Iris is trying to get your attention to show you a picture of a puppy that she’s drawn, while Tilly continues her monologue about Chinese food. “Did you know,” she asks, “that ‘dim sum’ literally means ‘touch your heart’?”

  You do know this, and so do Josh and Iris; Tilly mentions the fact at least twenty times a day. “Proud annoyance” might be a good description for your current emotional state. It tugs at you, the way she phrases it as a question; she knows that conversation is supposed to contain both give-and-take, and she’s trying so hard to get it right, even as she talks right over any answer that a listener might give.

  So yes, you silently answer the flyer on the wall. Yes, I do have a challenging kid. You squint, trying to make out the rest of the text, but the only words you can see clearly are a bulleted list of symptoms (emotional lability, repetitive behaviors, tics, attention-related issues) and a jumble of acronyms (ADHD, OCD, ASDs, SID, PDD-NOS).

  It seems like it should interest you—what are they trying to sell, anyway? A parenting seminar? A self-published book? A behavioral consultant? But you’ve hit some kind of informational overload, and you don’t want any more input. It’s everywhere, this talk about special-needs kids. Earlier this week, Jenny McCarthy was on Oprah, spouting her particular version of the vaccine hypothesis. The whole thing annoys you, partly because it seems like sloppy science—the study that first raised the question has been revealed to be deeply flawed, and a number of more recent investigations into the matter have shown no connection—but you can see why it strikes a chord with parents. We were just trying to do what we were supposed to, they seem to be saying. We followed all the advice, and this happened anyway.

  Something you’ve discovered over the past few months is that there seem to be two groups of autistic kids; sometimes you even wonder if they might be suffering from two completely separate disorders. There are kids like Tilly who seemed a little quirky, a little off-center, right from the beginning. Her development hasn’t been smooth the way Iris’s has; Iris is your “typically developing” child, your yardstick for normalcy. You can take her for haircuts without worrying that she’ll scream the minute anyone touches her ears. You can expect her to make charming mistakes, like counting “one, two, three, nine, eight,” and to learn to read at the ancient age of six. But Tilly has always been wildly ahead of her peers in some areas and behind in others: she could read and do simple multiplication at the age of three, for example, but now, at eight, she still can’t ride a bike or tie her shoes. Essentially, from the moment she was born, Tilly has always been Tilly. She met most of her milestones and had all her shots, and there’s never been a moment you can pinpoint as the instant she went off the developmental rails.

  So maybe you’re not in the right subset to comment on the vaccination question. Because there’s also that second group of autistic kids, the ones whose stories aren’t anything like Tilly’s. The ones who seemed normal, perfectly fine, until the day after their fifteen-month checkup, or their eighteen-month, or their twenty-four. You can see why parents can’t help but draw a connection. If you can trace it back to that day in the exam room, your little one chattering away on your lap in his diaper, if you locate that as the last time that he really seemed like himself, then it’s impossible not to wonder if all these losses might be traced to the moment when the nurse knocked on the door and walked in with her bouquet of needles. To the way she was both gentle and steely as she held your baby down and made him cry. To the soft words of reassurance as she pasted Bob the Builder Band-Aids on both his thighs.

  There are too many people with the same story for it not to mean anything, although it may not have anything to do with mercury or thimerosal or the MMR vaccine. It may be years before anyone finally figures out what’s going on, but there’s something there. It’s going to come to light eventually.

  And who knows what it’ll be? Medicine is ever-evolving, like anything else. There was that thing about stomach ulcers, remember? Everything you ever heard about stomach ulcers suggested two things: one, there’s almost nothing anyone can do about them, and two, if you have them, it’s probably your own fault. Stress at work? Too much coffee and whiskey and spicy foods? Guess what? It’s caught up with you. It was like gout, almost Dantesque in its perfect irony. Then, a million years later, but still within the span of your lifetime, this comes to light: most stomach ulcers are caused by a particular strain of bacteria. Give the patient a couple of rounds of antibiotics, treat the infection, and he recovers completely.

  So maybe a cure for autism isn’t so far off. Autism isn’t exactly what Tilly has, but “autism spectrum” is close enough that you can use it as shorthand. Asperger’s is almost right, but it doesn’t describe her completely; you also suspect that Tourette’s may play a role, though you haven’t really explored it. Labels oversimplify (and contain criteria that are subject to change whenever the next DSM comes out), but they also serve a purpose. “She’s on the autism spectrum” gets you understood; when you say PDD-NOS, all you get are blank stares.

  It’s not even clear that a “cure” is the right thing to be hoping for. But you know this much: you need help, and for now you’re on your own. So you do what you can to make things easier for her and for yourself. Don’t assume anything: if you tell her not to pick up her food with her fingers, she may lean forward and put her mouth directly on the plate. Make her feel safe. Don’t let your own anxiety about her behavior get in the way of giving her what she needs. Remember that there’s a larger picture here: we’re all scorned and admired, celebrated and pitied. Today you may be the mom whose child seems too old to be having a tantrum in the post office (or the one whose child is touching her head to the floor of a Chinese restaurant—right there, she’s doing it again), but tomorrow you may be the mom whose child holds forth on the difference between “time” and “thyme” in the produce aisle of the grocery store.

  When she’s having trouble with something—like now, as she begins to lose patience with how long it’s taking for the food to arrive—try to look at things from her point of view. (Isn’t that what we keep saying she lacks? Okay, then; you try it first.) Imagine that your fingers fumble and don’t always do what you want them to. Imagine that you feel like you’re wearing a pair of thick gloves while trying to zip zippers and button buttons. Imagine that public restrooms are so loud that you’re genuinely frightened to go inside them, and that the fresh-ground coffee smell at Starbucks is so strong that it makes you want to gag.

  Imagine that everything is loud and hard and overwhelming. Imagine that you can’t always tell when you have to go to the bathroom. Imagine that sometimes you become so involved in your own thoughts, the electrifying beauty of your own plans and ideas, that you can’t pay attention to what the rest of your body is doing, whether you’re stepping on someone’s foot or about to knock a glass of juice off the table.

  Josh is telling the kids knock-knock jokes, delaying Tilly’s meltdown, even if you can sense the desperation in his forced cheerfulness. Better this way, though, you think, even as you make another aborted reach for your pocket. Better not to remove yourself from your life. Try to be here, at dinner, with your family. Pay attention to the colors of the fish in the tank by the door, the s
cent of soy and garlic in the air. The spot on your place mat where your beer has made a damp circle around the Year of the Ox. Nothing’s wrong, not at this moment. No reason to wish you were anyplace else. Iris tries to stand on the seat to look at the people behind you; as you pull her down, you press a kiss to the back of her head.

  They’re beautiful kids. You think so, at least. They get their hair color from you, dirty blond—a phrase given new meaning by this new tic of Tilly’s—but it’s wavy like Josh’s, which you think makes it prettier than your own straight (and often limp) head of hair. Brown eyes, big and expressive. Smart and funny and brave, both of them. And they’re yours. They’re yours.

  The food arrives, trailing banners of steam. You’re relieved to see that they remembered to leave the onions out of the lo mein; that’s a meltdown forestalled. You bat away the girls’ hands as they reach for the hot dishes, and begin spooning food onto everyone’s plates. There are complaints and comparisons about who has more of what, but there’s enough here for all of you. Your little corner of the restaurant falls quiet. You pick up forks and spoons and bow your heads in anticipation of the first bite.

  On the way out, you stop briefly by the bulletin board, turn your eyes toward the green piece of paper. You don’t have time to absorb very much of it, but the words “parenting” and “help” capture your attention. You rip off one of the tabs at the bottom, the phrase “Scott Bean, Harmonious Parenting” written sideways with a phone number and website, and jam it in your purse. Later, when you look for it, it will be gone. It will be three more years before you hear the name “Scott Bean” again. That time, you’ll pay more attention.

  chapter 7

  Iris

  June 4, 2012: New Hampshire