Love Anthony Part 19

His mother, already barefoot, runs straight into the cold water, soaking the bottom of her black dress. "Owen! You gotta stop taking off! We don't want to lose you!" She picks Owen up by his armpits and spins him, dragging his feet across the surface of the water, drawing circles around them. His face is pure joy.

Happiness.

Olivia aims her camera. Click. Click. Click.

"Thanks for looking after him," says his father to Olivia and Beth. "I thought for sure he'd be in the parking lot."

"No problem," says Beth.

The boy's father, Beth, and Olivia stand next to each other for the next many minutes in silent relief, watching the boy and his mother splash and spin and laugh together in the bright moonlight. Glowing.

Loved.

Click. Click. Click.

"There you are!"

Beth looks over her shoulder and sees Georgia waving and teetering in her heels on the last step of the stone stairs. Georgia slips out of her shoes and walks over to this small, unlikely gathering, visibly unable to piece together why they're all here. "Is everyone okay?"

"Yup," says the father, removing his shoes and rolling up his pants. "We're all good now."

Safe.

"Great," says Georgia.

Probably dizzy, the mother has stopped spinning her boy and now hangs behind him as he splashes. The father joins them and holds his wife's hand.

Wanted.

Click. Click. Click.

Happiness. Loved. Safe. Wanted. Beth can identify these qualities, these necessary ingredients for a relationship that works, so readily among this family in front of her. She sees each one in this little boy with autism as easily as she sees the bright moon in the night sky, yet she still can't form a specific image of what these elements look like in her.

"I thought you ditched me," says Georgia.

"Never. You ready to go?" asks Beth.

"Yeah, let's."

Before Beth ascends the stone path, she looks back toward the harbor to say good-bye to Olivia, but she's squatting at the edge of the water, photographing the boy and his parents, and Beth doesn't want to interrupt her. Beth smiles, imagining how beautiful those pictures will be. She can't wait to see her own portraits. They should be ready soon. She meant to ask about them.

As they walk up the steps, Beth wonders what motivated Olivia to chase after the little boy. It was probably the concern any adult would have who notices a young child who takes off alone toward open water. But as she walks with Georgia across the lawn of the Blue Oyster, she remembers Olivia's panic-stricken eyes and the tears on her blanched face and wonders if it was something more.

She'll have to ask her when she sees her again.

CHAPTER 27.

Beth's been champing at the bit all morning, dying to get to the library, but she had too many household ch.o.r.es that couldn't be ignored, and now she's at Jessica's soccer game. Jimmy is there, too. Alone. They're both watching Jessica run up and down the field, standing separately but next to each other on the sideline in awkward silence.

"So how's your book coming?" asks Jimmy finally, still staring at the field.

"Good. It's coming along," says Beth, similarly not averting her eyes from the game, but not because she's worried about missing a play.

"That's great. It's really great that you're writing again. I'm proud of you."

"Thanks," she says, unexpectedly flattered.

She turns to look at him. He's watching her now and not the game, smiling.

"I'd love to read it."

Her face flushes hot, and she diverts her eyes down to her black shoes. She's been pouring her heart and soul into her writing, weaving everything she feels and knows and believes into this story. Jimmy's sudden and unsolicited interest in her book, in her, makes her happy. But the thought of Jimmy reading her heart and soul, of revealing herself so intimately and completely to him now, pokes at something inside her not yet ready to be touched. Trust.

She lifts her eyes to meet his and flashes a timid smile before forcing herself to focus on the girls on the field.

When the game ends, Jessica goes off with Jimmy, and Beth drives straight to the library. She walks up to the second floor and peeks through the doorway. Eddy Antico and Pamela Vincent are gone. No one is reading Moby-d.i.c.k, and no one is in her seat. She smiles and gets settled.

She dreamed about her book last night and woke with the next chapter fully formed, vividly detailed, waiting for her, like a gift. She was thrilled but then increasingly anxious every second that it lived only as knowledge likely to vaporize at any moment in her head and not as letters written down in ink, safe on a page. She opens her notebook, uncaps her pen, and writes as fast as she can to release the words before they vanish.

My one name is Anthony. When I was a smaller boy, I used to think I had two names: Anthony and YOU.

My mother and father would say things like: Anthony, come here.

Do YOU want to go outside?

Do YOU want some juice?

Anthony, here's your juice.

Can YOU say TRUCK?

Anthony, say TRUCK.

Anthony, put your shoes on.

Go ahead, YOU do it.

YOU can do it.

Anthony, do it.

So it's easy to see the cause of my earlier confusion. These nickname words-YOU, I, ME, WE, HE, SHE-they can still confuse me, but I'm mostly okay with them now even though I don't like them. Nickname words depend on the situation, and I've never liked things that depend on the situation.

This is why I like numbers. 6 + 3 = 9. Always. 6 + 3 Pringles or 6 + 3 doughnuts or 6 + 3 rocks in a line or 6 + 3 silver minivans in the parking lot. The answer is 9. Always.

But YOU can mean Anthony or my mother or my father or Danyel or a total stranger in the parking lot.

How are YOU?

YOU is my mother if my father is talking and my mother is there, but YOU is Danyel if my mother is talking and Danyel is there, but if both Danyel AND my father are there, then YOU could be my father or Danyel or BOTH of them. So the owner of YOU depends on who is talking and who is there to be spoken to. Like I said, YOU depends on the situation. YOU follows a Depends Rule, and this is not the kind of rule I like. I like Always Rules, rules that always stay the rule no matter where you are or who is talking.

Always Rules are perfect because they always follow something called cause and effect, and this makes me calm and happy. I used to think light switches were an Always Rule. If I flipped the switch up, the light turned on. If I flipped the switch down, the light turned off. Over and over and over. Always.

Until light switches turned into a Depends Rule. Last winter a big storm came, and the power went out, and I flipped all the light switches in the whole house up and down and up and down and nothing happened. The lights stayed off.

So light switches turn out not to be an Always Rule, the kind I like, but a Depends Rule. Flipping the switch up will turn the light on as long as the power hasn't been stolen by a big storm. Light switches depend on the weather. I stopped loving light switches after that big storm last winter.

Eyes are also a Depends Rule. Eyes can be happy or angry or interested or sad, they can be awake or asleep, bright or tired, they can stare or move away. Sometimes eyes cry. Eyes are always something different depending on the situation. Some days when my mother and I go to the grocery store, her eyes are bright, but other times at the grocery store, her eyes are tired. And sometimes at church, her eyes are happy, but other times at church, her eyes cry. So even the same situation can't tell me what eyes are going to do. This is why I don't like eyes.

Things that are Depends Rules like YOU and light switches and eyes are bad because they can't be trusted. I can't know for sure what is going to happen next with YOU and light switches and eyes, which means that ANYTHING can happen next, and anything is too much. I end up wandering the halls in my brain, not knowing what room to go in, scared and confused. I usually end up hiding in the corner of the Horror Room if I'm dealing with a Depends Rule.

So I avoid Depends Rules like eyes and light switches. But there was no avoiding the nicknames like YOU. Nicknames like YOU are everywhere, so I had to learn to accept YOU.

But mostly, I only like Always Rules. I like cause and effect. Something makes something else happen, and I know what's going to happen before it happens because it always happens. This makes me feel good.

When something is a Depends Rule, anything can happen, and this makes me scared. It makes me scream and cry.

I have a thing called AUTISM. My mother and father don't understand the cause of my autism, and this makes them scared. It makes them scream and cry. They must like cause and effect and Always Rules like I do.

Being a boy doesn't mean having autism because most boys don't have autism and some girls do. Getting shots doesn't mean having autism because lots of boys and girls get shots and they don't have autism. So having autism must follow a Depends Rule. Autism is not like math. Autism is like YOU and depends on the situation. So I avoid thinking about autism because I don't like Depends Rules.

All this thinking about YOU and light switches and eyes and autism has me wandering the halls. I'm going into my Counting Room now.

I'm counting the tiles on the kitchen floor. 180. There are always 180 tiles on the kitchen floor. Always.

Always makes me feel good.

Always makes me feel safe.

Always.

CHAPTER 28.

Olivia sits in her living-room chair with one of her journals in her lap and stares out the window at the trees in her yard. She doesn't like the trees here, the scrub pines and the scrub oaks. They're too skinny and too short. They appear brittle and emaciated to her, as if they're undernourished or sick. But that's just the way they are. The trees back in her old yard in Hingham are real trees-huge, several-hundred-year-old oaks with trunks thick enough to hide behind and branches that spread across the sky. This time of year, the leaves would be red and gold and breathtaking. She sighs as she looks out the window at the rusty brown leaves on the tiny scrub oaks in her yard, daydreaming of fall in Hingham.

October 1, 2006 I think I want to stop Anthony's ABA therapy. I know it's helped with a lot of things. His attention span is better. They've used it to teach him how to stay in his seat, do puzzles, stack blocks, get dressed, brush his teeth.

I have to admit, it does work. Anthony performs a desired behavior, or in the beginning, a close approximation to what we want him to do, and he gets a positive reinforcement. Reward for good behavior. Pick up a puzzle piece, get a Pringle. Stick your head in the middle hole of your shirt. Pringle. Put your feet inside your shoes. Pringle.

I remember not liking the idea of ABA at first. Scientists use this same kind of behavioral conditioning to get pigeons to peck a b.u.t.ton for food pellets. Anthony's a boy in a house, not a pigeon in a cage. But it works. ABA has given Anthony so many skills I worried he'd never master.

But lately, instead of adding skills, Carlin's been focused on eliminating undesired behaviors. The ABA language for this is "extinguishing." I'm not at all comfortable with that word. I picture a candle burning, glowing orange in the center of Anthony, and Carlin is huffing and puffing like the big bad wolf, trying to blow it out. Trying to extinguish him.

They've been working on trying to get rid of Anthony's most prominent autistic behaviors, the stimming ones that most get in the way of his functioning or appearing normal. Hand flapping is the biggest offender. HANDS DOWN. Carlin says this every time he flaps. She places his hands by his sides to prompt him, and if he keeps his hands still at his sides, even for an obvious second, Pringle.

The stated rationale for "extinguishing" the hand flapping-it's a crutch. Anthony is hand flapping instead of talking to communicate what he wants and feels. If we eliminate flapping as an option, he'll have to find some other way, hopefully spoken words, to communicate.

The unspoken motivation for trying to get rid of the hand flapping is that it just looks weird. It tips everyone off. He looks like a regular, if aloof and quiet, kid until the flapping starts. Then I notice the looks. Something's wrong with that kid. Parents are careful to keep themselves and their children at a safe distance once they see the hand flapping. It might be contagious.

When Carlin first spoke to me about the agenda for extinguishing Anthony's hand flapping, something in me resisted, but I didn't have the words yet to explain it. Plus, she's the therapist. She's the expert. She knows what she's doing. So I went along with it and made a joke instead.

"He's Italian. Of course he talks with his hands!"

Carlin smiled and then proceeded to outline the precise plan for silencing Anthony's hands.

But here's the thing. I don't think his hand flapping is a crutch. I don't think, Oh, if only Anthony weren't flapping his hands, then he'd talk to us! He can't talk, and thank G.o.d he flaps his hands. Anthony communicates through his undulating bundle of ticking screeches and flapping. This is how he tells us what he wants and how he feels.

Granted, it's a limited form of communication, but this is what he has. And I've become pretty fluent in this bizarre language. I know when his hands mean This is TOO good or This is the best thing I've ever seen or I don't like what's happening or It's too noisy in here or I want MORE swinging or I want to go home right NOW. Like with any language, the quality and emphasis of the flapping plus the context communicate the specific meaning.

HANDS DOWN. Are we silencing an already muted whisper? Shouldn't we be doing the opposite? Hands, tell us more!

Another behavior on the "extinguish" list is his obsession with Barney. Anthony still insists on watching Barney, and only Barney, over and over and over. If I try to redirect him before he's done watching, or if I shut off the TV because we need to leave the house or it's time for his ABA therapy, he loses his mind. "Perseverating" and "addiction" and "obsession" are the words his therapists and teachers and doctors use, and so I've been using them, too. And again, like the theory that removing Anthony's hands might force him to use his voice, the hope is that by eliminating Anthony's preoccupation with Barney, this will make room for other, more age-appropriate interests.

At first, I was on board. Barney drives me crazy. I wish Anthony would move on, even to a new obsession. I like his rock obsession much more. At least this lets us spend time at the beach, and even I enjoy combing for beach rocks, so it's an activity we sort of do together. I don't understand the joy he gets from lining them up, but I don't mind the rocks. But the purple, singing dinosaur, he can go.

I thought about our contribution to his Barney obsession. We buy the DVDs, record the show on the DVR, and at least once a day I actually encourage him to zone out in front of the TV, in need of thirty minutes of peace. And today's technology really does feed this symptom of autism. When I was a kid, there were no DVD players, no On Demand, no DVRs. I'm sure I would've been obsessed with The Sound of Music or The Wizard of Oz if I could've watched them every day instead of only once a year. So it's easy to enable this kind of addiction today. And I've been his dealer, happily handing him his drug of choice each and every day.

Carlin said we could go cold turkey if we wanted. We could simply throw out all the Barney DVDs, stop recording it, delete all the existing episodes, get rid of his blanket and all the Barney toys. That'll end it. Or she could work with him using ABA to wean him off it. That seemed more humane to me. The methadone-clinic approach to Barney rehab.

But yesterday, when he was in hysterics in front of the blackened TV screen, Carlin refusing him access to the remote control, I had a different thought. We've been calling this thing with Barney a "perseveration," an "obsession," an "addiction." What if instead we called it "love"?

When I watch Anthony watching Barney, he's completely enamored. Delight dances all over his beautiful face every time the little, purple, stuffed animal turns into the giant, live Barney. He squeals, Eeeya-eeeya-eeeya, and flaps his hands.

This is too good!

He recently discovered the REWIND b.u.t.ton on the remote, and he's learned how to replay the same thirty seconds over and over and over. He laughs a deep belly laugh every time and flaps his hands.

I love this so much!

Anthony LOVES Barney. How can we take away something he loves? Don't we want to encourage love? Why would we extinguish love?

I wish he loved something other than Barney. I really, really do. But why should we get to pick what he loves? I love books and the beach and cooking. David loves football and hockey. What if someone decided that I spent too much time at the beach and reading and cooking and insisted that I give up these things I love? What if someone "redirected" me and insisted that I love hockey instead? Instead of reading and going to the beach and cooking, I had to watch hockey and learn the rules and play it. I hate hockey. I'd be miserable. I wouldn't be me.