Monday, April 25, 2011

When Autism Sucks (and then doesn't)

Autism doesn't suck every day. Sometimes it lets me in to see the unique beauty and vision of my son. But then there are days when it causes him real pain. And then I want to kick autism's ass to the curb.

Like two Saturdays past. Yeah, it was one of those days.

It started out with such promise. I had actually gone out on a date Friday night with my husband. We saw a movie (Source Code) in a real movie theater and it didn't suck, and we'd had dinner in a restaurant that didn't serve burgers & fries (because that's what the kids eat in restaurants).

I'd gotten some sleep. Sure, Jake woke up at 6:05 (really? on a Saturday? really?) but he happily entertained himself on the computer until 7:30.

OK, he watched the Mad TV episode "The Fast and the Curious" for the ten thousandth time. (Yes, starring Vin Diesel and Curious George, and yes, this is what's fueling the current renaissance of his obsession with Curious George.)

But I got to sleep until 7:30. Win.

Totally worth hearing Jake repeat "The Fast and the Curious" like a TV spot announcer all day long. I think.

So, Saturday. The day we'd long been awaiting had at last arrived... "Rio" had finally opened in the theaters.  I've only been hearing about it for six months now, and Jake was near giddy with anticipation.

We headed out to the movies, just the boys & me, since 3-D gives my husband a big headache and he successfully begged off (lucky bastard).

It was all running so smoothly, a little too smoothly, and so the gods of autism had to reach down and screw it up for us again.

End of movie. Ethan starts bouncing up and down, tells me he drank his whole water (why did I bring water?) and really needed to pee. If it were just he and I - no problem, if he had a friend with him -  no problem, if all four of us had gone to the movies - no problem.

Just the three of us - BIG problem.

The bathroom in this theater is not just outside the door, but downstairs on a whole other floor. Ethan, understandably, didn't want to go alone. I couldn't leave Jacob alone in theater.

And Jacob? Loves the music at the end of movies, lives for movie credits - maybe his favorite part of a movie. I knew it was going to be trouble, BIG trouble, to extract him before the last note of the last song had faded and the lights went up.

So picture us: Ethan doing the pee-pee dance as if life depended on it, Jake jumping up and down, dancing to the credit music. It has to be getting near the end of credits, so I move us closer to the door.

They're playing a big loud song, they're deep into the list of background animators, this MUST be close to ending, I know the final song is coming up, so I tell him Jake that Ethan HAS to go pee, that we HAVE to go to bathroom and we're going to wait until the end of this THIS song and then go.

Now we're halfway out the door. In fact, we're in the middle of the open doorway, like a large river rock, making everyone flow around us, and I just don't fucking care. I'm trying to get away fast after the penultimate song, to be on the escalator before first notes of the next, last song start up.

I'm praying to the gods of autism that this will work, but know deep down how cruel they are, that I'm surely fooling myself big time if I think I'm going to get away with this.

And indeed, three steps from the theater doorway the waterworks start.  And then comes the keening, the great big hiccuping sobs, as if he'd just lost the love of his life. Jake is sodden and sobbing and repeating over and over: "Now we're NEVER gonna finish this thing!" which is a script from somewhere, I don't really care.

And so focused am I on comforting my boy, I don't see or notice the stares, although I know Ethan does, shrinking from all the eyes upon us, from his brother and the scene we're causing as we noisily race down the escalator to the floor below, the one with the bathrooms.

"I'm sorry, I'm sorry" he apologizes profusely, and this, too, breaks my heart, that Ethan has to feel bad about needing to pee. I tell him it's not his fault, that he's done nothing wrong, but know that my words just float on the surface, won't sink below the sheen of his guilt.

I make sure that Ethan hears me as I tell Jacob: "I know you badly want to stay to hear the last song, see the end of the credits, but it is hurting Ethan's body to not pee right now, and his physical need to not be in pain has to come before your feelings and desires."

I know full well that to Jacob, even if he were not so gone into misery, this would not mean much: a jumble of words, abstract mumbo-jumbo. But Ethan needs to hear it, to know it is okay to come first, even if it makes his brother this sad.

We stay in the theater building a long time. And still Jacob, limp, spent, is crying as we walk out into the gray drizzle; crying as we get into the cab; crying as we walk into our building; crying as we settle back into our apartment; crying because, to him, he has not seen the movie because he has not seen every last little bit, until the last note of the last song has faded and the lights have gone up.

The gods of autism are assholes.

But then Sunday, the very next day, it's a whole different story.

Another day, another autism.

We're out on Long Island at my Aunt and Uncle's house at the end of a dead-end block with the fields out back. And my cousins are their with all their kids, too, so we are a wondrous gang of cousins.

Jake is in and out of connectedness, but with the space to do so, sliding the glass door open to run in and out of the yard at will. Delighted to go along with the gang on our shambling walk through the woods.

And then after the seder and the dinner, when guitars and ukuleles are brought out and folk songs are being sung, I pull a pair of pots out of the cupboard at Ethan's brilliant suggestion.

And suddenly Jacob is in the thick of things, drumming away, calling out to his cousins, gleefully a part of the music making, a member of the band.

(Sorry about the bad Droid shot, but my camera battery had died)
And so Sunday, autism doesn't suck, is just a part of who Jacob is, not getting in his way, may likely even be a part of his innate rhythmic abilities.

And I watch Jake, my awesome drummer boy, light up the room with his smile, light up my heart, always.

And the gods of autism are smiling, too, mercurial jerks though they may be; merciful, for one day.

I'm also linking this post up to Shell's Pour Your Heart Out linky at Things I Can't Say

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