Farewell to a short bus

He’s been riding them for years. Some were terrible, others were okay. One was great.

One night while giving C a bath, I noticed small red marks all over his torso. He couldn’t tell me their origin, but after some cajoling I came to understand that his bus matron was pinching him when he was “too loud.”

This was a low point, but there were others. One short bus was just a beat-up yellow minivan blasting reggae music. Other buses had no a/c despite New York City’s notoriously hot and soggy summers. One had no heat: foggy clouds emanated from the driver’s mouth as he greeted C one January morning.

Not happy after a long ride on a hot day with no a/c

One belched blue smoke and broke down regularly. It died its final death on a highway overpass during rush hour. The matron had to transfer the kids through traffic to a replacement bus when it arrived an hour later. Another short bus was perpetually late and the bus company’s only phone number was a single cell phone. Always busy.

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These stories aren’t unique to C’s buses. One friend waited two hours for his autistic son to arrive home. The driver wasn’t responding to calls from the bus company, and no one knew where they were or why they were late. No explanation was offered.

Another parent’s non-verbal autistic child was dropped off at the wrong stop. Fortunately, a good samaritan saw the young boy wandering around, realized something was amiss, and went to work figuring out where the boy belonged. Had it not been for the kind stranger, all could have ended badly.

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People make fun of short buses. In fact, the term “short bus” is often used as an ableist slur, one so common even evangelical Mike Huckabee thought it was an appropriate way to insult people. (Which begs the question, is there an appropriate way to insult people?)

But these short buses aren’t a joke, and they’re far more than a utility; for special needs parents, they’re a lifeline. And all we ask is that our kids make it from home to school and back without incident. We entrust our children to strangers who earn little more than minimum wage, and who have little if any training in special needs. And, in fairness, most of them do their jobs competently, if with little enthusiasm.

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Median salary for a New York City school bus driver, via salary.com

Last week, however, we said goodbye to a very good bus. A great bus, in fact. It was clean and dent-free. It was quiet, with tinted windows to reduce heat and glare. Both the air conditioning and heat were effective, and it hummed like a sewing machine. Oh, and it was a hybrid.

None of that made the bus great, however. Alex and Mariana, the driver and matron, made the bus great.

C getting ready for his last ride to school with Mariana and Alex

Each morning C is greeted with big smiles. “Good morning, C!” they cheer. Mariana asks how his day is going so far. “Great!” he says as he bounds up the bus steps, backpack flopping behind him.

C taps the dashboard clock when he gets on, time being something of an obsession for him. Some drivers have scowled, one used to swat his hand away, as if the clock were some kind of mission-critical flight instrumentation. Not Alex: he laughs, confirms the time with C, and gives him a fist bump or high five. And why not? You could set your watch by Alex’s arrival times. And when the bus is running behind, they send texts so we can prepare C to deal with his “schedule anxiety.”

Some matrons report every infraction—he was too loud; he banged on the bus window; he yelled when we got stuck in traffic—but not Mariana. On the occasions when I’ve asked how C is behaving, she smiles and says, “He’s fine.” Translation: “Sure, he sometimes does things he shouldn’t, but we’ve got this.” (Thank you for not making everything a problem we have to solve.)

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C rides the bus for up to three hours every school day, and for the past several months, we’ve had the good fortune of knowing he’s riding with Alex and Mariana, two people who not only do their job ably, but who genuinely care about the children in their charge. Two people who won’t earn any extra money for being good and kind, but who do so anyway.

Sadly, today was C’s last day on the best short bus he’s ever had. We’re grateful for the peace of mind you’ve given us, Alex and Mariana, and for the care and affection you’ve shown our son. Maybe, if the stars align, you’ll be picking C up again in the Fall. Either way, you’ll always hold a special place in our hearts.

TED Talk: "To understand autism, don't look away"

Today's TED Talk has an important, moving message. As this autism mom says, "There is no need to be an expert nor do anything heroic to include someone. We just need to be there...we simply need to be close. And if we are afraid of something or we don't understand something, we need to ask." It's seven minutes, and well worth it. Note: the talk is in Spanish with English subtitles.

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.