Autism and Surprises

Ben is always surprising us – mostly in good ways. (The other kind, we’ll get to that.) For example:

Sightseeing with Ben is literally that – sight seeing, as in a very quick glance and then the sight’s been seen and it’s time to “go to the car please.” Appeals of, “But Ben, look at…” usually does nothing more than annoy him, no matter if it’s ”… the colors!” or “…the animals!” or “…the pictures!”

This past weekend, we’d sojourned once again to Brandywine Falls outside Cleveland (where Ben lives in a group home) for another look-around, but this time we descended the long stairways to the base of the falls, something we’d not done before. As expected, when we reached the end – the gorgeous destination – Ben tapped the end of the fence and turned to begin his ascent back up the stairs, with barely a glance at the cascading water and cloud of spray. I didn’t even have a chance to snap a pic and instead of the usual, “Ben, look at the waterfall!” I tried something else.

“Ben, I want to take your picture!”

When Ben sees a camera, pointed his way or not, he’ll often say, “Smile and say cheese!” But he doesn’t change whatever he’s doing or look into the camera or smile or say cheese.

Well whadaya know. This time, for whatever reason, he got it. He didn’t say the line, but instead turned back to the falls, and spent an epic full minute looking like every other tourist, examining the falls from different angles, and smiling ear to ear before resuming his retreat.

Maybe we should suggest he wipe tables when we go to restaurants. Our trip to Cleveland’s landmark Sokolowsi’s (“since 1939”) didn’t provide any surprises, at least not for us. Surprised, or maybe startled, that was for the diners when Ben belted out his pissed off I-hate-waiting war whoops. “It’s coming!” and “None of that!” and “It’s reWINDing!”and “You have to wait!”

As she often does (sometimes pre-emptively as soon as we walk into a room), Karen made a one line apology that included a brief explanation, lighthearted and smiling, to those staring at our disgruntled diner.  Except for the little kids, everyone stopped staring and many smiled. Often we’ll get a response along the lines of, “Oh yes, we have a [son, nephew, brother, friend, daughter] with autism.” Awareness has certainly expanded, and Ben’s doing his part to spread it, especially in restaurants.

I’ll often say to little kids, caught in an elevator with a happy but yodeling Ben, that “he’s very loud, but very friendly.” Sometimes it helps. Other times they still seem a bit freaked, clutching their mom’s leg. But they’ll grow up aware. Ben is very educational.

But waiting is never fun for Ben, or anybody with him. Watching a brief story about Einstein and his revelations about time recently made me think about Ben’s own relationship with time. Even if he knows something is coming “soon,” that relative term is meaningless to him, giving us a new angle on the theory of relativity. 30 seconds or 30 minutes don’t mean to him what they mean to “neurotypicals.” Waiting, especially in a restaurant for food, is hell for the big guy.

But in so many other ways, Ben has come so far, like being able to be in crowds, and even enjoying it. This weekend we all saw the country come out in support of science in our new Neanderthal age. We decided to be brave and take Ben into the fray.

We prepared him with a social schedule:

Ben's Schedule: 1. Mommy is making a picnic lunch -- Sandwiches. 2. We will drive to a Science March. 3. We will March to the Park. 4. We will eat our picnic at the Park!

After asking for and getting squeezes as soon as he got out of the car – expected anxiety when entering a new situation or place – it was surprise time again. He loved it.

It was an intense scene in Cleveland’s Public Square for an autistic young man. Sensory stimulation galore. Lots of people, and lots of noise. Protesters protesting, science-lovers laughing and dancing, little doggies barking, sound system blaring the Rolling Stones – not sure why, actually. (Ironically, nothing to taste – the one sensory stimulation we know Ben would be happy to encounter if it was pepperoni pizza, for example.) And lots to see. This was, for Ben, the pay-off. Signs.

A hallmark of our new protesting age is the signage, countless hand-made posters and placards with creative and funny and angry and informative messages. Ben loves words, reading them and spelling them out and pronouncing them phonetically. He’s a bit hyperlexic that way. This was a feast for his eyes. He beamed.

We stayed a whole ten minutes. It might sound like I’m being mildly sarcastic, but ten minutes in one place, especially a strange places, is like an overnighter for a neurotypical. Surprise surprise surprise.

Ben loves reading, and he really seems to be enjoying the various signs at the Cleveland Science March and Rally.
Ben loves reading, and he really seems to be enjoying the various signs at the Cleveland Science March and Rally.
One of Ben's favorite books is about the planets in the Solar System. In  other words, Ben's a science fan -- and he is happy
One of Ben's favorite books is about the planets in the Solar System. In other words, Ben's a science fan -- and he is happy to show his support.
Ben seems to be a born activist -- who knew?
Ben seems to be a born activist -- who knew?

Yet another surprise was his facility with our smartphone and, particularly, Google! We had absolutely no idea he knew how to web search. Neither had his staff at his house until recently. We don’t know how or from whom or where he learned this big skill, but when he was looking at some pictures Karen pulled up, he pressed a few icons, found Google, and typed in “spot the dog.” Up popped images of his favorite cartoon canine that made him grin. And videos!

We were shocked. And, to top it off, this was an android. Ben’s iPad is an Apple. Similar yes, but different enough that I, for one, find it a pain to switch because the devil’s in the details. But apparently for Ben, no problem.

Truth is, I guess we shouldn’t be that surprised. Ben uses a computer and an iPad for games and videos, and he types words and tiny sentences (with prompting) into a word processor, and enjoys it. But using those skills to search the web is a leap we hadn’t made in our heads, even though I’d thought about it before and wondered if he’d ever be able to do it. I just didn’t realize he’d already figured it out.

His love for words just took a major leap in practical functionality. It’s a very big deal. Go Ben!

And then came our biggest surprise of the weekend.

“Oh!” I heard Karen say from the back seat. “I think Ben just threw my phone out of the window!”


“Pull over, I want to check!”

We quickly looked through the back seat. No phone.

New rule: Ben’s window must be closed when using Mommy’s phone.

He didn’t do it to be naughty. He did it because he was excited. Searching for and finding Spot tickled him, and when happy, Ben will often “juggle” whatever book he is holding (and he’s always holding a book or has one next to him if both hands need to be occupied). It’ll go high in the air or, if indoors, hit the ceiling.

This time, with the car window open as we cruised, Ben juggled Karen’s phone right out the window.

“We are NOT losing that phone,” I said, knowing a replacement would cost $500 because the contract was pretty new and far from over. Maybe -- probably --  it would be busted, but a repair bill should cost less than a replacement. Either way, I was going to find it. Karen wasn’t so sure I’d succeed.

Luckily it wasn’t a highway, but it was a busy street, with barely a tiny shoulder and a grassy, muddy ditch running parallel to the asphalt.

First we circled back and slowly moved along the road, pulling as far to the side as possible and stopping when cars would approach so they go around us before resuming our crawl.

We didn’t see it. We did see a freshly-squished raccoon though. I hoped the phone wasn’t wedged into it.

“Nope,” I said. “We are not leaving without that phone.”

I had Karen pull over, I got out, she drove back and forth and back again, and I walked through the grimy grass with cars whizzing past, scouring the side of the road, and repeatedly dialing her number, thinking I might hear it ring. I didn’t.

And there it was, face down.

And, completely intact.



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