Tilly’s eleven now, and in fifth grade. She’s having kind of a tough year, despite the excellent staff at her new school. She’s been using violent language, giggling when she gets in trouble—all the usual stuff, pushing limits to find out what happens if she goes too far, with a few new elements thrown in. Most horrifyingly, she’s been teasing a boy in her class who uses a wheelchair. You suspect that (like most things with Tilly) it stems from anxiety: it scares her to imagine living in a body that doesn’t work in the usual ways, so she fixates on it. Or tries to distance herself from it, maybe? You’re not sure, but you’re shocked at some of the cruel things you’ve heard coming out of her mouth lately.
So here you are. You don’t enjoy forced social situations like this one—you’re a little like Tilly that way, it’s not as though you don’t see the connection—but you have some hopes about this evening. Not just about Scott Bean and whatever he might say, but about the other parents who have come here looking for help. You are hopeful, as juvenile as it sounds, that you might make some friends.
You’re talking to a woman named Janelle, who’s driven all the way from Philadelphia to be here. “Well, kind of,” she says. “I have an aunt who lives here, so you know, two birds with one stone. But really, I planned it around coming here tonight.”
She seems nice. From the brief exchange you’ve had, it sounds like her son is more severely impaired than Tilly, but you’ve still found a number of things to connect you.
Right now, she’s talking about Facebook. “I can’t even look at it anymore,” she says. “For a while last summer, Hayden had to have a feeding tube. And whenever I’d look at Facebook, I’d see these posts about normal kids, you know? I have a girlfriend from high school, and she has a little boy who’s three weeks older than Hayden. And every time I sat down at the computer, there’s just picture after picture of him up there learning how to ride a tricycle.” She pauses, shrugs. “It’s not that I’m not happy for them, you know? It’s just . . . my days are so different from theirs.”
“Yeah,” you say. “I know.” And you do, even though you take a moment to be silently grateful that a feeding tube has never been on the list of things you’ve had to deal with. It’s taken you a long time to understand how lonely you are, but it’s one of the main reasons you’re here. A couple of months ago, you had a phone conversation with a woman you know slightly from your neighborhood. She was looking at special-ed schools for her son, and she wanted to hear a little bit about Tilly’s experiences. It turned out that your kids had totally different issues; her son seemed to fall pretty clearly into the “learning disabilities” category, which is an entirely different type of profile. But talking to her was like talking to a cousin or a childhood friend: you understood each other, without having to explain. You felt almost giddy, and it wasn’t just because the kids were finally asleep and you were sipping wine while you talked.
“So here’s an example,” you’d told her, this neighborhood mom, in an effort to explain Tilly. “Earlier tonight, I found her writing swearwords on her bedroom wall with sidewalk chalk.”
This is the kind of story that usually brings down a wall between you and everyone else. You can share funny mom stories with the best of them, build an easy camaraderie, add your own well-worn snapshots (minor tantrums, car sickness) to the communal slide show. But the moment you load up Tilly on the screen—Tilly bright and jagged, Tilly angry and hurting, Tilly in such clear focus that you almost have to look away—something changes. Shock or concern or pity, you’re not always sure which. And usually, you perceive judgment, whether it’s there or not. Autism is one thing, but bad manners? Whose fault do you suppose that is?
But the woman you were talking to that evening just said, “Hmm.” She sounded thoughtful. And then, genuinely curious: “Well, was she spelling them correctly?”
Talking to this other mom now, Janelle, and glancing at the other parents in the room, you feel the same sort of kinship and relief. Recognition. You came close to skipping this thing tonight—long day, everyone tired, and so on. But you’re already glad you talked yourself into it.
“Janelle and Alexandra,” says a male voice behind you. You swing around and see that it’s your turn to meet Scott Bean.
“Hi there,” you say, shaking his hand. This is the part you weren’t looking forward to; you feel desperate a lot of the time, and you would give almost anything to find someone to help you (in whatever vague form that might take). But there’s also a part of you that’s wondering who this guy thinks he is. So you’re deconstructing his approach—calling you by name, which makes him seem warm, even though you know he got it from the sticky tag on your sweater; making eye contact like a politician and patting you on the shoulder before moving on to Janelle—even as you watch yourself making the first tentative gestures toward shifting your hope in his direction.
“Glad you could be here,” he says. “Go ahead and find a seat. We’re almost ready to get started.”
You sit down at the round table in the center of the room and make yourself busy taking out a pen and some paper. You’ve got a new purse-sized, spiral-bound notebook, purchased expressly for this evening. A dollar nineteen offered up to the gods of please-let-this-work.
“Hi there,” Scott says, once everyone is settled. “And welcome. I think I’ve met you all, but let me just begin by saying that my name is Scott Bean. I don’t know you yet, and you don’t know me, but I think it’s fair to say at least this much: you’re here because you’ve been having a hard time. And I’m here because I think maybe I can help.”
Hokey, you think. But your throat feels tight. You’re not so starved for whatever it is he’s offering—attention, compassion, understanding—that you’re going to burst into tears after a single sentence. But you know yourself enough to recognize that this is exactly what you hoped he’d say.
“To admit that your kids aren’t ‘typical,’” Scott continues, “is hard. There’s no one who hears that euphemism and doesn’t know it’s standing in for ‘normal.’ But until you recognize your child for exactly who she is, you’re never going to get anywhere.”
Well, yeah. This isn’t news. This is every parenting book you’ve ever bought and never found the time to read. Yes, and they also need limits and consequences, right? Fascinating. Tell us more. You’re playing a kind of game, trying to figure out how much of your faith you’re going to put in this man. You’re waiting for him to win you over.
Scott smiles suddenly. “Okay, now, I’m going to show you all something, and I’m interested in seeing how you all respond.” He slides something out of a folder in front of him on the table and holds it up: it’s a photo, a head shot of the actor Denis Leary. You groan audibly, without really meaning to, and you’re not the only one who does.
Scott laughs. “Yeah, okay. So this guy got into some trouble a few months ago, for saying that most of the kids diagnosed as autistic are actually just brats. I’ll bet that pissed you off, and rightly so. You may have posted a nasty comment on Facebook; you may have composed a strongly worded letter in your head, on a night when you couldn’t get to sleep.”
He pauses, looks around the table. His face is serious. “But maybe—tell me honestly, now—in the back of your mind, was there just a tiny part of you that was wondering if he was right? No, not that there’s no such thing as autism; we all know that’s a load of crap. But did any of you think, in some small, hidden place in your mind, that maybe these kids—and by ‘these kids,’ let’s be clear that I mean your kids—shouldn’t be acting this way? That they don’t need to be acting this way, and that maybe you’re contributing to their bad behavior?”
You look down at the pad of paper you’ve brought, squeeze your pen, and then carefully put it down. The room is perfectly silent.
“Think about the last time you went out to dinner and your child acted out. Let’s say, for the sake of argument, that you took your k
ids out to the Cheesecake Factory last weekend, and things didn’t go as well as you’d hoped. Your kid raised his voice, or tilted his chair until he fell over backward. He spilled things and ate with his fingers and melted down when the waitress forgot that he asked her to leave the onions off of his sandwich.”
Scott’s voice is clear and strong. He can fill up a room in a way you’ve never quite learned to. A few people are nodding. You’re with them, even though you’re keeping your gestures neutral for the moment.
“You know why it happened: it’s hard for him to sit still, he gets cranky when he’s hungry, there were unfamiliar smells that bothered him, and he was anxious about whether he’d like his food.”
By chance, his eyes meet yours directly as he speaks, and a faint shiver travels the skin of your arms. His voice is louder now, forceful and confident, but there’s a note of compassion in it that nullifies any sense that you’re being lectured. You can tell, hearing him talk, that he cares about what’s happening to these kids. He cares about Tilly, without ever having heard her name. It’s going to be hard for you to explain this later, to Josh or to anybody else, but it’s the soft note of concern in his voice that undoes all of your careful defense-building. How to explain that you feel safer in his presence, knowing that he’s on your side? How to explain that you came here tonight because sometimes you feel like you’re being mummified, and that you didn’t even realize it until Scott Bean offered you a pair of scissors?
Scott pauses here and nods, like whatever expression you’ve got on your face has confirmed something for him. You glance around at the other parents. You can see that some of them aren’t with him yet, aren’t with you. Blank expression or pursed lips. But you get it, you get them. It’s okay if you’re not exactly on the same page; what you share is more important than what divides you. You all want the same things here. You all love your kids.
Scott takes a sip from his water bottle, then goes on. “But do you suppose that anyone observing your family last week at the Cheesecake Factory was thinking, ‘That child with special needs is having trouble behaving appropriately in this environment’? Or is it more likely that all those people observing you were thinking, ‘Hey, if you can’t control your kid, then go home so I can enjoy my Tuscan layered salad in peace’?”
There’s some laughter, but it’s subdued. It hurts to talk about this. It hurts.
But something tiny and indefinable has changed. You’re with him now. You’re with him all the way. Even after so short a time, you trust that Scott Bean will not inflict pain on you without following it up with something that soothes. There’s work to be done here, important work, but it’s going to be messy. And you already know that you’re going to sit through it without flinching.
Because the other thing he’s here to do is to remind you of this: you are lucky to have this child. You wouldn’t trade her for anything, and that’s not just a platitude, an easy greeting-card sound bite; it’s a position you question and revisit with some frequency. She’s yours and you’re hers, and you don’t have endless time. If you can’t find a way to help your daughter, your lovely fire-bright girl who thrills and confounds you, who spells every swearword perfectly . . . well. If you can’t do that, then you’ve failed at the most important task you’ve ever been given.
chapter 16
Iris
June 9, 2012: New Hampshire
It’s Saturday, the night before the first batch of Guest Campers arrives, and Scott is leading us all out into the woods for something called Saturday Campfire. Scott’s been working out here for a couple of days with the help of the dads, fixing up a clearing for us, and this morning, Candy and Diane and I made these special fire-starters by collecting pinecones and dipping them in melted wax.
We’ve been walking for a while, maybe five or ten minutes, which isn’t that long when you’re playing a game or watching a movie or something, but it feels pretty long when you’re walking on bumpy ground, tripping over tree roots and ducking down so the branches don’t hit you in the face. We all have flashlights, but we haven’t turned them on, because it isn’t dark yet. It’s shadowy, though, because of the tall trees, and . . . well, it’s not quiet exactly, but everything sounds a little softer than usual: grown-ups talking, and birds making noise here and there, and our feet crunching along on the pine needles. Even though I know it’s not true, I could almost believe that we were walking someplace where no humans had ever gone.
I’m creeping myself out, so I slow down until Tilly catches up with me.
“It’s weird out here,” I say.
“Yeah, kind of,” she says, but I can tell she’s not really paying attention. She’s deep inside her head, as always.
“Did you know,” she asks, “that the Motherland Calls memorial is sinking into the earth?”
She’s talking about this giant statue she likes in Russia. It’s a humongous woman with a sword sticking up in the air; it’s got something to do with World War II. I don’t really like it. Actually, it kind of scares me.
“Yeah, I know,” I say. “You told me.”
“It’s shorter than it used to be, and it’s because it’s so heavy that the ground can’t completely support it. And no one’s doing anything to fix it.”
“Yeah, I know.”
“What if it sank down so far that it was completely inside the earth? Like first her legs would disappear, and the bottom of her dress, and she’d be sticking up out of the ground halfway. She’d look like she was buried and she was climbing out, like the Statue of Liberty in Planet of the Apes.” Not that either of us has ever seen Planet of the Apes, but our dad found a picture online, back when Tilly was first getting into all this monument stuff.
“That wouldn’t happen. You said that they think it’ll just fall over someday.”
“I know, but what if it did sink that far down? In the end, you’d only be able to see the tip of her sword sticking up out of the dirt. And hundreds of years in the future, people would wonder what it was. And if they ever dug it up, maybe they’d think that God put it there, instead of people, and they’d make up a whole religion about it.”
I sigh. Obviously, that’s completely stupid, because in this future place, wouldn’t they still have history books and the Internet, and wouldn’t they know that there used to be a huge statue in exactly this spot? Or wouldn’t there be a big hole in the ground or something? But she’s busy thinking about it now, getting deeper and deeper into the idea, and there’s not really any point in arguing with her.
This is what Tilly’s mind is like. You know how teachers are always saying that the imagination is this great thing, because it lets you go anywhere and do anything? It’s not really true for everyone, though, the way it is for Tilly. It’s like the rest of us have our brains cooped up in a little box, and we’re always bumping into the walls whenever we try to think about anything too big, like Is it possible for a statue that big to sink completely into the earth? Or But wouldn’t the future people know that the statue used to be there? But somehow Tilly never hits those walls. It’s like she flies right through.
Sometimes I wish I could be inside her head, just to see what it’s like. But I guess that being inside her head would also mean all the other stuff, like forgetting to eat with a fork sometimes and freaking out when you lose a pen, because maybe you’ll never find it, maybe it’s not under the couch or in some other room that you carried it into when you weren’t paying attention. Maybe nothing is the way it’s supposed to be, and maybe the pen is just freaking gone.
Up ahead of us, there are two trees that are leaning toward each other, with a path between them, like a gateway, and just beyond that there’s a big empty area. We’ve all been walking in groups, but everyone sort of narrows down into a line to go through the trees. And then suddenly everything’s brighter, because there aren’t any branches above us, and we’re in a big clear space, with a bunch of firewood p
iled in the middle.
Everyone crowds around the woodpile in a circle. Tilly and I are standing together, with our mom and dad behind us. The four of us squeeze in tight, till we’re all touching, which is nice, sort of like a family hug.
Scott waits until everyone’s there and has found a place, and then he says, “Welcome, Core Family. Welcome to the Harmony Circle.”
I want to giggle because he sounds so formal, but I know he’s trying to be serious and solemn, so I don’t.
“This is a space,” he says, “that’s just for us, the Core Family, the CF. Once the Guest Campers start arriving, there are going to be a lot of other people moving in and out of Camp Harmony. But every Saturday night, in between one group of GCs leaving and the next one arriving, we’ll gather here, and for that little slice of time, it’ll be just us again.”
Next to me, I can feel Tilly starting to get twitchy; her arm jerks against mine, and she starts moving her shoulders up and down. She doesn’t like to stay in one place for very long; it’s almost like she can’t, like her body starts bothering her if it goes too long without moving. I wonder how long Scott is going to talk.
“The Harmony Circle is a place of renewal and purification,” Scott says. “It’s a weekly chance to clarify our purpose, to check in with each other, to remember why we’re here. So let’s get started, okay?”
He picks up the cardboard box that has the fire-starters in it. “Kids, come on up here,” he says.
“Oh, good,” I hear my dad whisper to my mom. “Let’s give them open flames.” Mom laughs quietly.
Tilly and I and the rest of the kids move away from our parents and gather around Scott. Ryan ends up next to me, and I hear him repeating something quietly, under his breath: “Arson for the parson, arson for the parson.” I’m assuming it’s some Simpsons thing, and that he really wants to say it, but he doesn’t want to get in trouble with Scott for making a joke about the fire. No one’s gotten AD Block yet, and nobody wants to be the first one.
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