Autism, Two Ways

My oldest son Quinn is a high school senior this year, and we carved out a little time this summer to visit some colleges as we went west. And although it *can* be exciting to go on group tours with Roman, it's generally something we avoid when we care enough about trying to pass for normal.

Roman is delightful. But experience tells me that most people don't like it when small humans pounce on their pauses and finish their sentences with posterior references. As in 'we'll go through the quad and take a left at the...' "butt crack!"** This type of road show is generally to be averted.

So while Quinn and Jeff were visiting UC Berkeley (because as Blondie sings, "dreaming is free"), I decided that Roman, big sister Lucca, and I should do something fun! <-- italics used to indicate future irony.

Remembering Roman's opaque hints en route to California - like imitating Siri to prompt us to "take a slight left at playground road," I knew just the thing: a little free play was in order. So I googled playgrounds in Berkeley and came up with one ranking as one of the TOP TEN in America. Whatttttt? We. Must. Go. Here! Lead on, Siri!

Startling at first blush, Adventure Playground is down by the Berkeley Marina, and presents more like a pint-sized skid row than your standard modern, solidly built, primary colored, impact-resistant child containment and recreational area. Imaginative architecture, questionably constructed, randomly painted, all conceived and created by kids. It's wonderful.

Kids earn construction materials and painting supplies by combing through sand and supplying three splinters meeting specific minimum length requirements. This because all their supplies are donated, and there is always work to be done prying nails off of newly donated boards, mixing odd paint colors together, and helping kids create their own projects.

So when we signed in, a female staffer asked if we'd like to help shovel some sand at the end of the zipline run. Lucca peeled off to check everything out, while Roman and I grabbed shovels, transferring sand from one pile to another. At least I was. Roman was doing the reverse, shoveling from point B back to point A.

And after a few minutes, it was awkward. Because for every scoop I put in, Roman dumped one back out. No, haha, we have to shovel sand FROM here TO here, I said lightly. Then repeated, gesticulating for emphasis. RoMAN!, I intonated, a hand on one hip, trying to pretend that he was a scamp...

Finally, after a few solid minutes of NON work, I punted and sheepishly outed my son to the volunteer. "Sorry, Roman has autism..." I trailed off, uncertain if I should provide further details. But to my surprise, she quickly and brightly replied "AWESOME!" And she meant it! Yesss! Delightful weirdos welcome here. And I am happy.

I chase Roman around from the sandbox to the giant spider web to the crow's nest (that one's a bit dodgy) to the slides to the... zipline! And Roman is ready. He climbs the ladder to the ten-foot platform and waits for his turn behind three boys. They go, one by one, while I wait at the opposite end, iPhone at the ready to film his moment of glory for Jeff and Quinn.

Except when his turn comes, Roman hands the zipline to Lu. "I wanna watch," he says. And she obliges, hopping on the zipline and crashing into the sand pile by me moments later. The boys come back around for another turn and Roman backs away into the shadowy corner of the platform. And then out of nowhere, a whole camp load of kids bum rush the zipline, and the line suddenly snakes around for days.

No problem, I put my phone away and come over to grab Romi. Because at this point, I can't see a future in which a happily squealing Roman meets sand pile feet first. I arrive at the platform, threading my way through kids and moms, trying to explain to him to make his way back to the ladder and come over. And he does, finally, but instead of coming to meet Lu and I, he decides to *help* the next zipliner down the course by holding onto the end of her rope and running alongside.

He's a quarter of the way down the zipline run. "Romi, Rome- let go sweetie!" He turns towards me. "That's not safe," I say. He stops and drops the rope. And walks towards me. (I know right? I'm totally proud of him!)

But then, I start to be aware of a commotion. A man is shouting. I identify him as a staffer, stomping towards us, and he is screaming "Boy! Hey BOY!" Moms are turning their attention to me. And I get that feeling- you know the one. The one where I realize that he is yelling at my son. My son who covers his ears at loud noises and quails at angry tones. (Mama Bear, engaged.)

"BOY! YOU! CANNOT! HOLD! THE! ZIPLINE!" No response from Roman, who is making his way over to me. "HEY BOY!" he yells. My blood? Boiled.

"RO-MAN has AU-TI-SM..." I say slowly and icily, "... so he might not respond... the first time you call him BOY." I am contemptuous with him yet still fixing Roman with my loving eye. Chalk one up for motherly multitasking.

Backpedaling a little, the staffer replies "well can you speak to him? I don't have the training." "I AM SPEAKING TO HIM! If you would just stop yelling!" I yell, guiltily. I am exasperated. Most of the English language has left me, and everyone staring. My palms are sweating.

He points a fraudulent smile at me, irritating me even more. Fight or flight kicks in, and I bolt before things get primal. "A little patience goes a long way," I bluster passive-aggressively over my shoulder as I shepherd Roman towards the car, Lu trailing behind.

I throw the car into reverse. Meanwhile, my interior monologue runs wild. "I don't have the training?" I repeat in my mind. "The training?" Maybe working at a PLAYGROUND with CHILDREN isn't the best career choice for you? Maybe you could GET some training? Maybe you could stand down when you see that parents are ALREADY on the case? Maybe you shouldn't presume that every child has the SAME neurology? Maybe you could ask a child's name, crouch down to relate to them on their eye level, speak to them respectfully and calmly, and connect with them as a fellow HUMAN?

I catch Lucca and Roman's doe eyes in the rearview mirror. Shit! That's when I realized that all MY stupid came out at the zipline too. I could have mastered myself, taken a deep breath, chosen equanimity, educated this - albeit ill-equipped - staffer, modeling good behavior myself. But instead I stormed off with my littles, quipping angrily as I went, and leaving a trail of shocked bystanders in my wake. Leaving them to think that THIS is autism.

And in true Top Chef fashion, I got served an order of autism, two ways. Both at the zipline, both when Roman was trying to help, and both when things went sideways. One sweet though, and one sour.

Of course there were no eyewitnesses in between, when Roman was invisible, running around and playing like every other kid. Murphy's Law. But this is what you get sometimes, when you try to pass for normal. Someone appears to strip the screw, remind you that you are nowhere near normal, sandpaper you raw, and make you look insane. Because it is ALWAYS about inclusion, and it is always about how you allow other people to make you feel.

"So what did you guys do?," Jeff asks when we meet up on campus. "Um..." I stall, "... how was the tour?"

Because, feeling like I ate dessert first, I'm still trying to get the bitter taste out of my mouth and gin up some equanimity.


** True story: last week, and out of the blue, Roman declared "I like science!" Science is Roman's one mainstream class at school. Jeff replied- "You do?" Roman's answer: "I like butt science!" :(

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