A speck in a sunbeam

We take Subway Adventures with C.

He decides the destination, and off we go. Times Square. Canal Street. Brighton Beach. This Sunday, I let him navigate. First stop: 125th Street in Harlem on the A train. He loves the A train because it runs express.

He was jump-dancing as we flew past each stop—72nd! 81st! 86th! 96th! 103rd! Cathedral Parkway! 116th!—gleefully calling out the names of each passing station. Passengers looked: some smiles, some scowls. I loved it.

Rather than exiting at 125th Street, we headed to the downtown platform and took the A train the entire length of Manhattan to the World Trade Center. Once there, we explored the new PATH Terminal. He flopped on the ground and stared up at the vaulted, cathedral-like ceiling. He took his shoes off and skittered about saying, “Ice skating!” Announcing, “The tile is cold,” he strode over to a section of floor bathed in sunlight.

I watched him walk away until he was just a speck in a sunbeam.

When we were done exploring the PATH Terminal, he led me to the 2 train so we could return to Columbus Circle. This was his afternoon, and he took the lead, choosing destinations, reading signs in the subway stations, finding the right train to get where we were going.

Reflecting on our adventure, I realized that this is what happens when we presume competence instead of incompetence. When we assume capability instead of inability. This is what happens when we encourage “What if?” instead of “Why not?”

I was so proud of C. More importantly, he was proud of himself.

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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?

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.

A chat with geese

"Let's see the ducks," C says. It's actually more of a demand, and it's the same each time we're at this particular playground, usually after he's had his fill of the cacophony and chaos of other children.

We walk a couple hundred yards down a gentle hill to the pond where the "ducks" are. Actually, they're mostly geese with a few ducks and an occasional swan thrown in for good measure, but "ducks" is C's shorthand.

The waterfowl congregate in the water before C, hoping he'll throw some bread in the water as most other people do. Instead, C orates.

Unable or unwilling to talk with the other children in the playground, he has no problem speaking to the birds floating before him. "Hello, ducks!" he says brightly.

He'll pick one out and ask, "What days do you want to be line leader?" (He's obsessed with being line leader at school, so naturally he assumes everyone else — including the "ducks" — must be as well.)

Sometimes he'll give one of them a name. On this particular day he christened one, "Duck Bird Fundun." Although the goose doesn't know it, this is quite an honor: "Fundun" is C's pretend surname, so that makes the bird a member of his family.

When no breadcrumbs are offered, the geese eventually grow impatient and start to drift away. Concerned he's losing his audience, C picks up some bits of rock and bark and throws them in the water. He's pleased with his strategy as the geese swim back eagerly. He's not teasing them; he just assumes their joyful paddling and honking mean this is what they want. Upon realizing the ruse, the geese swim away for good, C staring at them slightly confused.

...

Last night I pondered C's affection for the geese. He's not that fond of other animals; in fact, he wouldn't even go near a friendly, trained aid dog at a recent autism event. I think he likes the geese because they gather around him, but never get too close. They won't leave the bounds of the pond, and yet they swim just close enough to give him the sense of connection he desires. Push-pull. Engaged but at a distance.

Maybe if the children in the playground were a little more like the geese — willing to get close without intruding — they'd have better luck with C, too.