Full of surprises

C wrote a book with a message: never underestimate him

I found him at our desk, pieces of letter-sized paper stapled together splayed before him, writing.

“What are you doing, C?”

“I’m writing my book.”

“Your book?”

“Yes. Now may you please go away?”

I went away. For about ten minutes. Then I came back. He was still writing. Then he wasn’t; holding his pen thougthfully before him, he pondered his next word. I came up behind him to take a photo and he didn’t even notice me. This was unusual.

This boy never stops moving. He climbs, runs, jumps, leaving a wake of flipped chairs and furniture stripped of its pillows in his wake. He focuses on iPad games, but not much else. Reading, writing, drawing? Not his bag.

The inspiration

Apparently he’d seen his mom writing earlier and decided he wanted to be a writer, too. So there he was, at our desk, writing his book: I have a story by C K McWatters. It took over 45 minutes and ultimately clocked in at what is, for him, a whopping eight pages.

The first page of I have a story

It was full of details about his life and his family. Accurate details. Details we’d shared with him maybe once before, years ago — like the story about how his grandmother had induced labor by walking up and down stairs in the hospital. Details he’d apparently memorized and now decided to set to paper.

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And then there’s the tone, at times conversational and cheeky: “Do you know what a twin is? If you don’t and you really want to know and you don’t, I have a story buy it from me for $4.00 only.” He was writing for an audience.

I should know better

It’s been a tough year. C lost his grandfather and his grandmother. His mom is fighting cancer. His world is more tumultuous, so he’s seemed more scattered than usual. Tough for a kid who on his best days struggles mightily with inattentiveness and anxiety, not to mention the fine motor skills required to put pen to paper and formulate a story.

Nonetheless, that’s precisely what he did for 45 minutes and eight pages. He wrote his story.

I’m ashamed to admit I was surprised. He always surprises me. And even though I always say presume competence, I forget to do it myself. Of course he remembers everything we tell him, even the silliest story, even when it looks like he’s not paying attention. Of course he has stories inside him. Of course he can write a book.

Of course he did.

Author photo

I love C’s book, but I think my favorite part is the image he drew of himself on the back cover, a tiny figure in a giant sea of white, capped by a single word: ME.

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In case you didn’t know

C is nine. He’s autistic and amazing.

Outside in

Even though it’s inaccurate, I love this photo of C.

First the accurate part: it captures my son enjoying a brief moment of quiet in a playground, unaware that some children were staring at him.

Now the inaccurate part: the photo suggests exclusion and isolation. It implies that he might be the subject of teasing—or worse. It fits the narrative of autism we’ve come to accept as true. In this case, though, it simply isn’t.

The real story is that C never stops moving; he’s a ball of perpetual, joyful energy, and moments like these are rare. Those kids? They actually tried to play with him a few moments before I took the photo, but he just kept on doing his thing. They seemed curious about this boy who didn’t need them; if anything, they were the ones who may have felt excluded.

I took this photo to capture a peaceful moment, but when I looked at it later, what came through was something more melancholy. Why?

Every photographer knows that context is everything. In any image, what’s excluded is as important as what’s included. Timing, angle, framing – each, in its own way, shapes our perception of a moment’s truth. No photograph tells the whole story, and most barely tell an accurate one.

A young autistic boy laughs with joy while sitting on a swing in a playground.

When I look at C, I see challenges. Big ones. But mostly I see joy and enthusiasm for the world—his world. I see a boy who loves life with a purity and exuberance I myself have never experienced, not even as a child. I have a choice, then: I can choose to frame his story so that it makes me sad, or so that it makes me happy.

On my better days, I choose the latter.

Pursue a life beyond what’s ‘normal’

The TED Talk that changed how I saw my son

“Today I have just one request. Please don’t tell me I’m normal.” These are the first words of Faith Jegede Cole’s TED Talk, and they changed me forever.

It was December 2012, and I was struggling to come to terms with my son’s recent autism diagnosis. I came across a link to Faith’s brisk talk — I wasn’t yet part of the TED team — and I decided to see what she had to say. When I was done, I scrubbed to the beginning to watch it over again. Then I sent the link to my wife.

When your child is diagnosed with autism, you’re inundated with reports and evaluations outlining the struggles your child is going to face, how difficult their life will be and all the work you have ahead of you. You immerse yourself in a pool of deficits wondering if you’ll ever climb out again, or whether you’ll learn to swim.

But here was someone who wasn’t framing the conversation in terms of deficits. Instead, Faith was talking about her incredible brothers and how their autism made them unique and special. Here was someone saying it’s not just OK to be different, it’s better. Here was someone telling me to look at my son in a different light, to notice all his gifts and potential.

Since then, I’ve come to think of Faith’s talk as my introduction to the neurodiversity movement, which celebrates diverse minds and ways of being — and understands, as Faith says, “Everyone’s got a gift inside of us, and in all honesty, the pursuit of normality is the ultimate sacrifice of potential.”

The talk

On love, empathy, and connectedness

“Rock it,” C says. “Rock the baby to sleep.” This time the “baby” is a tiny seedling he’s placed in the palm of my hand. Now he cradles my hand in his, swaying it back and forth and humming Rock-a-bye Baby.

On love

C loves babies. He talks to them as though they can understand what he’s saying. “How old are you, baby?” “Did you cry when you were born, baby?” He doesn’t seem concerned that they don’t answer. For their part, babies seem intrigued by this large-but-not-full-sized human with giant eyes and so many questions.

C has his own small collection of babies. At the moment, it includes four stuffed dogs and a doll with blue hair that he found in the playground. The first of his babies was a flop-eared stuffed dog he named “Pokelyn.” The others he named Chipwich, Doglass, and Lucy. (I don’t think the doll has a name.) He takes one of his babies with him to school every day.

A small stuffed dog sticks its head out of a backpack

On empathy

If he can’t find one of his babies, C becomes frantic. He blames himself; he says he’s a “bad parent” for being careless. He worries that the missing baby is “not in this world anymore.” He imagines they must be scared and lonely. He hugs and kisses them when they’re found.

A small boy is hugged by his male therapist

On connectedness

C has a very special friendship with Aaron, one of his therapists. Unfortunately, however, Aaron is moving away. C wrote Aaron a farewell note. It read:

Der Aron I love you. Il miss you for along time. Love C

If you’re unfamiliar with autism, I’d ask you to keep these anecdotes about my son in mind the next time you hear someone—whether they’re a celebrity, well-regarded researcher, or just a friend or family member—say that autistic people lack empathy, that they’re not connected to others, that they’re incapable of true love.

Remember, also, that people experience and display emotions in different ways, and that doesn’t mean their emotions are any less authentic or meaningful than your own. Look for the connections. You’ll find them.

Two resolutions

I don’t generally believe in New Year’s resolutions, but this year I have two.

1: Be more patient with M

C’s non-autistic twin, M, is what you’d call a Big Personality Kid—he can take over a room with his presence. And yet, through all the tumult of our lives, all the health and developmental issues, I’ve expected this little boy to toe the line, to make life easy—to avoid adding to the chaos. That’s unfair to any kid, let alone one who’s gone through as much as he has.

2: Take care of my health

I haven’t had a physical in four years. I haven’t had a real feet-up vacation in about a decade. That’s nonsense. It’s not good for me, and it’s not good for my family. First, I’m going to make an appointment with my GP. Second, I’m making a three-year plan: there will be a Real Vacation by 2019 come hell or high water. Or both.

So, what are your resolutions?