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.

View fullsize

View fullsize

View fullsize

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.

View fullsize

View fullsize

In case you didn’t know

C is nine. He’s autistic and amazing.

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.

---

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.

---

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.

View fullsize

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.)

---

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.

Thanks for finding my son

An open letter to Chris from Ikea

Dear Ikea Chris,

I apologize for not knowing your last name; the conditions under which we met weren’t conducive to a more formal introduction. But please know that I’m extremely grateful for what you did for me and my family Sunday at the Brooklyn Ikea.

You already know the beginning of the story, because you witnessed it: I was in the self-service area grabbing a cart when I let go of my son’s hand for an instant. Boom! He was off like a shot! I ditched the cart and was in hot pursuit. You saw me; I saw you. You said, “Is that your son?” I mindlessly said, “Yes,” and continued my chase. I honestly didn’t give you another thought: I had a visual bead on C and hoped to catch him before he got too far ahead of me.

Plants, Housewares, Lighting — I was able to see him even though he was gaining ground. And then I lost him. His small frame and nimble moves made it easy for him to thread the throngs of shoppers with their carts and oversized Ikea bags.

What I didn’t know—couldn’t know—was that you took off after C, too, but on a different trajectory. Your hope was to intercept him if I didn’t. Smart move, Chris, smart move.

I ran through the lower level, eyes darting left and right in case he found a resting place; eventually I came to the stairs leading up to the Ikea Cafe. A thought: C loves their french fries. Worth a shot, but no dice. Then I remembered he was drawn to a specific bedroom display, so I began a lap around the second floor looking for the setup.

C relaxes in a bed in Ikea

You work for Ikea, so you’re probably very familiar with the layout; I, however, felt like a rat in a maze filled with meandering shoppers and Scandanavian home furnishings. I tried to be nimble, but I sideswiped at least two unsuspecting customers as well as a Ypperlig floor lamp. (It wobbled but didn’t fall…I think.)

After ten gut-wrenching minutes, I finally made it to his favorite bedroom display. Again: no dice, no C.

And now panic set in.

You see, C’s autistic. He’s verbal, but his pragmatic language is weak; he struggles to explain things, particularly to strangers. When he’s scared, he has anxiety-fueled meltdowns which make it nearly impossible to engage him. He doesn’t know which strangers to trust or where to go if he’s lost and, as you saw, he’s prone to impulsivity. I imagined him running out the door and across the icy parking lot, confused and scared.

I was about to ask for help when something magical happened: a voice from above, a savior with a PA system: “Michael McWatters, please come to the rug department.” One more time for good measure: “Michael McWatters, please come to the rug department.” Huzzah!

A map of an Ikea store

I ran to the nearest directory: Rugs, downstairs. But how to get there? The map was inscrutable, or my mind wasn’t working very well. Or both. I could only picture C wailing, so anxious he’d begun to cough or throw up, as he’s done in the past when upset. So although I’m middle-aged, I once again summoned my mediocre-at-best high school football moves to avoid collisions while still making haste to Rugs.

Glassware, Lamps, Kitchenware — RUGS! And there, to my relief, was C. He was lying atop a waist-high stack of rugs, smiling, rolling, getting his sensory on. And there you were, Chris. I recognized you instantly: the guy who saw me running after my son. So much to say, but first I had to check on C: 15 minutes apart, but he’s fine, natch. It’s me who’s a wreck: sweating through my heavy winter wear, panting and enervated from the adrenaline blast.

C relaxing in a bedroom setup at Ikea

“Thank you thank you thank you! I’m so grateful!” I said. “I had no idea you were looking for him, too!”

“No worries! Glad I could help,” was your cheerful, humble reply. “He’s a funny kid. Took me a bit to get him to tell me your name so we could page you.”

I felt the need to explain. I said quietly, “He’s autistic…” But before I could finish, you nodded knowingly. “I could tell you needed help when I saw him take flight. I’m just glad I caught him.”

“Me, too. You have no idea.”

Or do you? Maybe you know how many autistic kids go missing every year. Maybe you’re aware of the fact that nearly half will run away before they’re 17 (the technical term is “eloping”), often with tragic results. Maybe you just had a sense.

Whatever the case, you did a remarkable thing. You saw an impish kid running away from his dad and understood there was something more at play. Most people wouldn’t have given the situation a second thought — and I don’t begrudge them, as outward appearances are deceptive — but you did, and you took action. You spared us both from excruciating anxiety…or worse.

So, Ikea Chris, thank you. I didn’t get your last name, and I should have, because the letter I wrote to Ikea corporate is incomplete in that regard. In it, I described Sunday’s events, told them your first name, and asked that they recognize you for your compassion.

If our paths cross again, I hope you’ll let me buy you a plate of Swedish meatballs in the Ikea Cafe. C will have the fries.

Progress happens

Two years ago, my son's previous school held a holiday concert. C had to be supported on stage by a teacher's assistant because he was so overwhelmed. The concert was loud and chaotic, all the more surprising since his school served children who often have major sensory issues. But his reticence to be part of the event went deeper than that: he was struggling.

Fast forward: C's current school had a holiday concert this week, and he was beaming with pride and joy, so confident and happy to be part of the show. In fact, when it was his turn to sing, he put on this deep voice and belted out his lyrics, silly as he was earnest. He even had to be pulled away from the mic, he was so excited. He danced and sang with glee.

So what happened in the intervening two years?

The concert was better planned than the one at the old school, it's true—not so overwhelming from a sensory perspective. But his ability to participate was due to much more than that. For one thing, the staff and teachers at his new school deserve a ton of credit for helping him to become so confident.

But on top of that is this: progress happens. Naturally, of its own accord, with support and love.

It's easy to forget that our kids, just like all kids, make progress. Sure, regression happens, but progress happens, too. It might look different for autistic kids vs. their non-autistic peers, but it's still progress.

Progress happens.

Thanksgiving?

If you've read this blog at all, you know I generally try to keep things positive. The reasons for this are many, but for one thing I have no interest in complaining about my son in particular, or autism in general. But there are tough times, and in the interest of keeping it real, I wanted to discuss this last holiday break for Thanksgiving. There were some wonderful moments and memories, to be sure, but it would be disingenuous to say it was all puppy dogs and lollipops.

This break in schedule — any break in schedule — really messes C up. Routine is his friend, and even a short break really drives him bonkers. This resulted in five days of complete hyperactivity. He was up early — 4 am or thereabouts — and going going going. This means no rest for us. At all. He has to be watched every moment.

Why? These five days were filled with jumping on furniture; writing on furniture; chewing furniture. Putting things in the oven — including an iPod. Flushing foreign objects down the toilet (plumber's on his way today). Stomping on the floor (thankfully our neighbors are very tolerant. Or hearing impaired). Hooting and yodeling at the top of his lungs. Putting gooey things found on the sidewalk in his mouth. Unable to sit and focus for almost any quiet activity. Perseverating on times and dates to the exclusion of nearly anything else. Running into the middle of a busy street for the fun of it. Just going going going.

Then there was the isolation: living in a state of basically always being overwhelmed, we never managed to organize anything at our home, and we weren't comfortable inviting ourselves to someone else's home. Friends say, "It's okay, just bring him along! It'll be fine!" But that means we can't enjoy ourselves at all: we'd have to watch C like hawks, follow him everywhere in a foreign environment (another stress inducer for him, and for us). And, frankly, it's enough to pay a plumber to fix our own toilet; we don't need to do it for someone else's, too. So, going to someone else's home was out — even if we'd been invited.

Normal routines were busted up. Our go-to sensory gym was closed for the holidays (just the time we'd need it most, alas). Social skills class was canceled for the same reason. And to top it off, the Department of Ed scheduled an evaluation for C on Monday, further destroying any semblance of routine. This last item really sent him over the edge: he looks forward to school, and to Mondays in particular, because that is when classroom jobs are assigned. These jobs are very important to C, and so he was utterly distraught and couldn't stop perseverating on it. (My wife finally had the great idea to have C help write an email to his teacher telling her what jobs he wanted for the rest of the week, calming him quite a bit.)

All this acting out was hard on C's twin, too. C's behavior stresses him out, and then he begins to act out, too. Thankfully, as he gets older, M is better able to understand and deal, but it's still touch-and-go.

Whew. Getting that off my chest feels good.

So, gratitude. Yes, there were moments of gratitude, too. I'm grateful that the weather was incredibly nice, allowing me to get C outside for extended periods. I'm grateful to my wife who made a wonderful Thanksgiving meal despite it all. I'm grateful to C for taking one tiny bite of the meal — sweet potatoes with marshmallows. I'm grateful to M for how he's learning to accept his twin. I'm grateful to get back to our routine...until the holiday break, I guess.

But most of all, I'm grateful for our health and general well-being when so many are suffering in unimaginable ways.

Thanks for letting me vent.