Love Anthony (29 page)

I remember not liking the idea of ABA at first. Scientists use this same kind of behavioral conditioning to get pigeons to peck a button 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 God 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
button 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.

I know getting rid of the flapping and Barney would probably help Anthony in some ways. He’d appear more normal. It’d be easier for him to be mainstreamed in school, to engage with other kids his age (there’s not a neurotypical six-year-old kid on this planet who loves Barney).

But here’s the thing. Anthony isn’t normal. There. I wrote it down, and the world didn’t end. I didn’t die, and neither did he. He’s not normal. He has autism, and his autism makes him flap his hands instead of saying That noise you’re not even aware of is making me crazy or I love Barney so much!

So I don’t want to extinguish Anthony’s hand flapping or his love of Barney, but I’m afraid to tell David this. He’s going to disagree. He’s going to say it’s giving up on Anthony. Not long ago, I would’ve said the same thing. But now I don’t see it that way. The way I see it, we can look at Anthony’s hand flapping and see an abnormal behavior that needs to be eliminated, or we can see our son bravely communicating what he wants and feels the only way he knows how to. We can look at Anthony rewinding Barney over and over and call it an obsession that needs to be treated, or we can call it love.

David’s going to say, If we don’t get rid of these autistic behaviors, then he’ll never be normal. He’ll always be different.

And my answer to this is going to be Yes. He will always be different.

And the world won’t end, and I won’t die. And Anthony will be in the living room, loving Barney.

CHAPTER 29

I
t’s now November, and the island continues to thin out, shedding the fat, each passing week seeing fewer weekenders and day-trippers. Olivia can go for long walks on the beach or along the roads of her own neighborhood without seeing anyone. Downtown is still open for business, but only because the merchants are all hanging in there for Christmas Stroll, one final bonanza chance to squeeze big dollars out of the tourists before winter officially sets in. After December, she knows most retailers will shut their doors for at least three months. Until the Chamber of Commerce invents some kind of organized excuse for people to come in the winter—the Nantucket Ice Sculpture Festival in January, the Nantucket Winter Olympics in February, the Nantucket Coffee Festival in March—no one will be back until spring. Nantucket is a quaint and seasonal island playground, not a winter destination, and certainly not a place any reasonable person would live year-round.

Olivia’s professional life is about to close for the season as well. She has one portrait session left to edit and then no more work. Her days are becoming lean and slow, unpressured and simple, and she now welcomes the change.

It’s late afternoon, and she is walking to her mailbox because she forgot to go this morning before breakfast and after reading from one of her journals as is her routine. Reading and rereading her journals these past many months has given her the gentle time and space to go back to what happened with compassionate eyes and a loving heart, to discover what she didn’t know then, what she couldn’t have known because it was all too raw, too immediate. She was too inside the emotions and the journey then to see them, never mind understand them. Now she does.

She sees her denial and then the scary anger that replaced the denial. She sees her despair and David’s, too, and the boundless chasm that grew between them. But more than anything, the thing that she sees now with the most clarity that stays inside her for hours and days after she closes her journal, is Anthony. Not the denial of Anthony’s autism or the anger about his autism or the despair over his autism. Not even Anthony and his autism. Just simply Anthony.

She sighs, wishing she knew then what she understands now.

She strolls alone in the middle of the road over long shadows, mindful of the sounds of seagulls overhead, wind chimes in the distance, the rhythm of her footsteps scratching sand against the pavement. The air is wet and salty and cold. Walking feels good. It enlivens her brain, convincing scared and buried thoughts that it’s safe to come out of hiding, inviting incomplete thoughts to show their jagged edges, welcoming the wandering and the weak. When she walks, her thoughts line up in her mind like white rocks where they can be clearly seen and cared for. Today, as she walks, she’s thinking about her sister and mother.

Maria wants her to come home to Georgia for Thanksgiving. It would be good to see her. Olivia misses her older sister. But the work of packing, leaving the island by ferry or plane,
enduring at least one connecting flight, sleeping on the couch in Maria’s living room, all feels impossibly overwhelming.

And despite her substantial and growing guilt over not having seen Maria’s kids in ages, Olivia’s still not ready to spend time with them, her beautiful niece and nephew, Anthony’s cousins, older now, thriving, so capable. Alive. And it’s not just the kids. It’s Maria’s entire life. Maria has always, effortlessly had it better, easier. She had the better grades, the cuter boyfriends. She attended a more prestigious college, landed a higher-paying job. She’s taller. And now look at her, happily married with two healthy children. Olivia knows this comparison isn’t fair or productive, but if she goes to Maria’s house for Thanksgiving, it’s also inevitable.

And she’s definitely not ready to deal with her mother, who, according to Maria, is still going to church every day, clad head to toe in black, where, in addition to still praying for Anthony, she now prays for Olivia’s divorced soul. She’s also probably saying a few rosaries to clear her own name, to be sure God knows she’s in no way responsible for Olivia’s shameful and sinful act against the Church. Olivia doesn’t have the strength to go home and be judged by her religion and her mother.

Maria says Olivia can’t stay in hiding forever. This is without question why Olivia came here in March, but without intending to, and just as the rest of the island prepares to go into hibernation, she feels the possibility of emerging, of beginning a new life. Maybe Nantucket isn’t simply a temporary asylum for her, a shelter from her grief and the life she didn’t get to live. Maybe this is her home.