Jake, back from undergrad academia, was with us for our weekend with the big guy.

Ben loves Jake, even though he hardly ever sees him. The twins have lived apart since they were twelve, with Ben in Wisconsin for five years and in Cleveland for the past six.

But Jake’s always remained part of Ben’s family mantra. “Mommy Daddy Jakey,” Ben will say, often out of nowhere. And Jake is the single, solitary person who Ben doesn’t flinch at — or angrily protest — if they want to join us in the car. He’s happy about it.

The last time Ben saw him, Jake had a Mohawk, and all of the pictures Ben has of Jake has him with, uh, “normal” hair.

As a (requested by Karen, and super-inexpensive) Mothers Day gift, Jake returned from school without the Mohawk, and is now on his way to a look more likely to get him a job. For the moment, that means a clean-shaven noggin.

I wondered what Ben would make of it, and wasn’t surprised that when he first glanced at Jake, he did a double take.

Then a triple take.

Followed by a quadruple take.

I said to Ben, “Hey, look, Jake got a …”

I expected him to say “…haircut.”

Instead, it went like this.

“Hey Ben, look! Jake got a…”


So I’m guessing Ben doesn’t want his own head shaved.

Ben also cracked us up by attempting some subterfuge to try and get us to play Sam Bush or Nickel Creek or Bela Fleck of Joel Frankel or Mary Poppins or any one of his favorites when it wasn’t Benny Music Day.

As I’ve written before, Benny Music Day is always the last day of our visit, when Ben is 100% in control of the car stereo on our long drives. We instituted it some years ago to get away from an entire weekend (or longer) of the same CDs, mostly kid stuff, over and over and over. Over the past dozen years, we have, with NO doubt, heard the Mary Poppins soundtrack more times than any other living entities in this world or beyond (and the 80-minute deluxe edition, with all of the incidental soundtrack music included, not just the songs – whoopee!). We’re talking literally thousands of plays.

Ah, autism.

Besides preserving what little sanity Karen and I still have, the Benny Music Day system has broadened his horizons. It’s truly wonderful when Ben requests something on Benny Music Day that he’s gotten to know and like because we play it for ourselves on a Mommy and Daddy Music Day (not what we call them, but what they are). Then it migrates over to the Benny Music Day repertoire.

Most of the time, Sunday is Benny Music Day. And he knows it.

Our stock answer when he makes a request on a Saturday (as he always does, repeatedly, since, hey, you never know – Mom and Dad are getting older and feeble-minded and he might get lucky, right?), is some version of, “Yes, tomorrow, because tomorrow is Benny Music Day.” Often, we have him complete the sentence. “Today is Saturday, and tomorrow is Sunday, and Sunday is…” and he’ll mumble, with no enthusiasm, “…Benny Music Day.”

This past Saturday, he got sneaky.

Out of nowhere, Ben said, “Today is Sunday.”

We knew that he knew it wasn’t.

“No Ben, today is Saturday.”

“Today is Sunday.”

“Sorry Buddy, today is Saturday and tomorrow is Sunday, and Sunday is…”

“Today is Sunday.”

“Today is Saturday”

“Today is Sunday.”

He didn’t win that one.

At another point, we didn’t win, either.

Ben is the human incarnation of Einstein’s Theory of Relativity. For Ben, time is relative in the extreme. The difference between sixty seconds and six minutes or six hours is meaningless. So, “Waiting” is something completely different to him than to us.

It is a black void. An endless gulf. “Wait” is abstract with no qualitative meaning. It is open-ended, with nothing to hang on to, like floating in space. Not surprisingly, it makes him anxious, sometimes in the extreme. And when Ben is extremely anxious, he’s extremely cranky.

Like on Saturday.

The McDonald’s drive-through lane was nothing out of the ordinary, with a few cars ahead of us. But even though he’d had plenty to eat that morning, Ben was more impatient than usual.

“You have to wait!” he kept saying.

“Wait” is what we call a trigger word. We’ve learned, the hard way, not to say it — ever.

When he wants something that he’ll have to wait for, I always start with, “Yes,” and in this case might say, “Ben will get McDonald’s; the lady will hand it to us,” or something that affirms he’ll get what he wants at some point. Fulfillment is the focus – NOT the open-ended eternity between now and fulfillment. That is waiting.

Distracted by the drive through delay and Ben’s growing displeasure, Karen absent-mindedly did what we do with Ben’s scripting. She repeated his words back to him.

“You have to wait.”

Mistake. She knew it as soon as the words came out of her mouth.

Ben’s unhappy litany of scripts blew up.

He hollered, “None of that!” “Hands to yourself!” “It’s reWINDing!” “You HAVE to WAAAIIIIIT!”

The food finally handed over, we took off. In five minutes, we were at our building.

Ben and I walked down the hall as he continued hollering his angry litany of unhappy scripts.

“BEEE happy!” “QUIET! QUIET!! QUIET!!!”

Irony, anyone?

A fellow resident opened his apartment door to see who was screaming “Quiet!” in the hall. I apologized. He didn’t seem to accept it.

And another five minutes later, chewing on his fries, Ben was re-entering the realm of actually BEEEING happy.

There’s a word for that.

Labile: adjective; Emotions that are easily aroused or freely expressed, and that tend to alter quickly and spontaneously.

But the weekend wrapped up nicely.

“Bye Bye Mommy. Bye Bye Daddy. Bye Bye Jakey,” Ben said as soon as we walked into his house, bending over to offer each of us the top of his bowed head. It’s Ben’s version of giving you a kiss.

As Mommy-Daddy-Jakey left for a longer-than-usual seven hour drive (thanks to an accident back-up and endless road construction), Ben was tucking in for his nap.

Ben hoofing it along Cleveland’s short but sweet lakefront path on the first perfect spring day — at least on the weekends we’ve been there.


2 thoughts on “Lability

  • May 25, 2017 at 10:43 pm

    I wish more folks without kids with autism would read this. It explains a lot. Well done…

    • May 26, 2017 at 7:43 am

      Thanks so much Ellen.


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