Thursday, September 8, 2011

Labor Day

You don't tug on Superman’s cape 

You don’t spit into the wind

You don’t pull the mask off the old Lone Ranger

And you don’t mess around with Jim!
                                    -  Jim Croce

I just want to buy a pack of cigarettes and smoke all of them. At once. I try breaking things and hold back at the last second, scaring myself. Walking the dog, a young couple on a Japanese motorcycle rev their engine at me menacingly in a cross walk and I stop dead in front of them, shouting, “Get off the fucking bike, assholes! You fucks! Come on!” and they stare at me and give me the finger, saying “Fuck you, lady!” and I give them the finger back and move on.
Summer in New York.
I remember the scene in “Pollock” when Marcia Gay Harden’s Lee Krasner screams at Ed Harris’s binge-drinking Jackson, “PAAAAAAAIIIIIINNNNNT!” I remember my friend Philosopher Mom reminding me of this scene, when I was in one of my ruts, shouting at me through the cell phone, “Wriiiiiiiiiiiiiiitttte!”
It’s that. It’s certainly that.
I’m not writing enough. I’m not exercising. My fall clothes won’t fit and my hair is a disaster. I’m exhausted. We have mice and I don’t care; I just feel bad that Bruce deserves better. Nothing that I’m doing feels like it’s working. I miss my mother.
But there’s more.
It’s been a year.
Labor Day was a year.
Since I tried to reinvent my life, since my cousin died on his motorcycle, since the bed bugs, the shredded rugs, since Bud’s crisis, since I tried to reel it all back in, the beginning of our unraveling…
and I, today, am running in place.


Like everything, it crept up on me. Bud’s summer school ended mid August, but my daughter Moopy and I had no break; we had school straight through. Bud was unmoored, spending long days with the sitter, away from his routine, his peers, and what amounts really to all-day therapy at school; he began to fray at the edges. I tried implementing home-style OT, but it was sporadic at best. I filled his days with the pool club and day trips, and the sitter took him to the playground and ran him ragged with water guns. But by the end of his third week, all his indicative behaviors had resurfaced, and while I noticed it all, I didn’t get it.
The twitching, the eye bugging, the crashing and bashing through the apartment, the noise making, negativity, impulsivity, compulsive prattle, pacing, and his second most effective ball-breaking expression of agitation; hurting his sister. What did it mean?
But first, to be clear, and fair; he does not abuse her, and for her part, she antagonizes equally, ambushing him around corners and smacking him on the head with a Barbie doll. Having witnessed the relentless pinching and pushing in office, more than one psychologist back in the winter pointed out to me that it’s nothing ‘typically developing’ children don’t do all the time to each other. 
I, however, never really experienced this behavior before; my only sibling is 12 years older than me and has profound autism and schizophrenia. She fed me canned peaches in my high chair and pushed me in the stroller, but she never, ever gave me an Indian Burn (yes, it’s still called that,) and she never, ever hit me. I needed to be told that slapping and arm-twisting are all in a sibling’s day’s work.
But it gets to me.
Typical for neurotypicals or not, behavior like that in a kid with Bud’s resplendent, necessary, saturating diagnostic terms means something.
And let’s be honest. He’s not this way off the wall.
Who stands in the middle of the avenue at midnight threatening motorcyclists?
So the twitching and the slapping and the on and on and on? It meant Bud needed his goddamn therapy! And I need my therapy because all my behaviors are back. I’m eating junk and dreaming of smoking, I’m bitchy and reactive and impatient, I’m peeling my feet. I need my clickety-clacky on the keyboard, my word counts, some screen time, some long walks, and some no one screaming MOMMY!
Bud and I, we want to be good, but it’s not easy.


The summer started fine. My classes were fine, Moopy’s school was fine. There did seem to be a lot of drama with Bud’s summer bus, a lot of 30 mile drives for me and The Moop down the BQE to pick him up, rather than waiting out the incomprehensible 2 hours it seemed to take the bus to get him home (which never happened during the regular school year, so WTF?); that alone may have put me in gear. I didn’t think I minded the drive; at least that way we could run to the pool instead of getting our brains blasted in the Sensory Processing Hell that is our filthy and overcrowded playground; and, we were going to the pool. Even I don’t have the gauche to complain about that. Plus the minivan Bruce got us is no less than a first class space ship. Apparently it liquefies the roadway and is rigged underneath with hovercraft pontoons. Also an in-tact credit card greased the weeks.
There were a lot of golden moments. Many evenings while I made the kids’ dinner, I’d become aware of their two voices, playing pretend with a blend of Barbies and action figures and dinosaurs, in the doll house and the Rapunzel castle, working out scenes of plastic three-horned children arguing and Power Ranger parents enforcing a truce. They took long baths sometimes, cooking soap food in their tub restaurant and inviting me to come try it “on the house.” Often we walked the dog down to the LaGuardia Landing Lights fields and on the way back one time, met a bunch of kids with a gaggle of little mop-top dogs; a boy stood shyly to the side, and Bud said to him, “I’m six years old. Do you go to summer school?” and the two of them all but walked off together into the sunset. One day at the pool Bud taught a gentle tempered nine-year-old boy to swim to the bottom of the deep end, by holding hands. 
But once Bud was on break, school-free, the tempo changed. There seemed to be even more running around, a lot of riding the subway in and out of Manhattan every day and climbing in and out of the van, a lot of organizing of gear and building up of garbage and extra laundry and lost toys and a lot of me running out to write my papers the minute Bruce walked in. I seemed to always have more to do than I could manage and my hours and minutes just evaporated. I knew going into the summer I wouldn’t get much writing, or much exercise, but I actually got none; it became a blur.
Except for Bud’s surges. Those are sharp. Because I forget, when he’s fine.
We went to DC one long weekend while summer school was still in session; Bud had been really steady for some weeks. But every single DC tourist attraction was mobbed, which represents Bud’s absolute single worst psycho-social nightmare; crowds. Each day started all right, with breakfast at a nearby Starbucks that had an awesome interactive sound sculpture outside on the wide sidewalk; Bruce and I took turns eating and then standing outside with the kids, tucking pieces of buttered bagel into their faces as they swung by on the sculpture. But by ten or eleven a.m., at each destination, Bud was just running. Blind, deaf, tunnel vision running through the throngs, through the Smithsonian, through the zoo, through Natural History, through town, across the Mall, into the hotel lobby and up and down the geometric patterned carpet hallways. Running.
Except in the hotel pool. Well, you can’t run in a pool. But I think over the course of three days the kids spent something like 15 hours in there, that blessed sensory integration tank, and thank God, because toward the end of the third day Bruce and I were on the brink of twin psychic explosions, just from the running and the bickering between the kids and the smacking. And the fourth day of the trip, on what brilliant whim I can’t recall, I changed the breakfast place.
Because he’s over the OCD stuff, isn’t he? Not quite so autistic? He’s fine, right?
Was I HIGH? By the time we walked out of the wrong Starbucks, Bud was bug-eyed, tangential, and literally shaking with anxiety.
The drive home to New York was long.
But half way into the school week that followed, half a week of OT, speech pragmatics, and psychotherapy, half a week with Miss Sharon and Miss Louise, his world whirring evenly on axis once again, Bud was right as rain.
Two weeks later, school was over.

Don’t fuck with it! Right? Don’t stop school! Don’t bring therapy to a screeching halt with no back-up plan! I mean, I know this stuff! Don’t mess with the kid’s concept. It is not worth it. That shit will not fly here. End of story. Bruce did the shopping recently and bought the wrong noodles and I gave them to my neighbor. Why? Because Bud can’t eat the wrong noodles! Duh! Do YOU want to make a big bunch of noodles and then throw them in the garbage? I don’t!
(Who am I ranting at? Oh. Myself.)
Why did I not find something to tide the kid over the school break? Because I’m still a newbie at all this? A grinne? Because I wanted to believe?

On the first of September I posted an old piece on my blog; a kind of ‘9/11 related’ memoir, of which I was very proud, but which was not new; I had nothing new. I had twenty pages of the next chapter of BEAUTIFUL KID, but it was nowhere near done. The window to finish it before classes ramped up for the fall had shut. Bud still had weeks to go before school started, and I was trying desperately to streamline sitter expenses, which meant no daylight writing hours for me. Every night I planned to get up early the next morning to exercise, then didn’t do it. Poems of mine that were accepted to a magazine would not come out till December, I learned - many months later than I’d hoped. And two other things I’d submitted with great optimism were rejected.
On September 2nd, I saw a rave review by an autism writer I respect, about an autism parenting memoir that got a ton of press and that I thought was awful; nevertheless, there it was, the memoir, published, grinning at me, as were two blogs I’d recently discovered, both outstandingly well written and picked up by publishers for books that will come out this year. I buried my face in my hands and cried for an hour, feeling very, very sorry for myself, and very, very jealous.
Meanwhile, Bud was spinning in his bed. He’d come out and we’d put him back in. He woke up the next morning talking a blue streak and did not stop, except to pull his sister down on her ass on the hardwood floor by the back of her shirt, “Because she was annoying me!” He spent the day jumping off the furniture. He completely stopped responding to his name. He talked about imaginary animals incessantly.
And that night, he and Moopy were in the tub, beating the daylights out of each other and patently refusing to knock it the fuck off (I do not curse at them, I swear.) Every time I walked out of the bathroom Moopy would scream. I charged back in to find Bud standing up in the sudsy water pointing at her, saying “She started it by throwing soap in my eyes so I smacked her in the face and I’m not sorry.” Moopy admitted that she’d thrown liquid soap in his eyes.
“I’ll be right back,” I muttered. “Stop killing each other.” I marched out to turn off the computer, giving up for the night, and inadvertently erased six really
I shut the computer. I went back into the bathroom. Bud and Moopy were holding each other’s heads under the water by force. I yanked them both up by their armpits. Bud I hauled out, Moop I left in there.
“You get yourself rinsed off,” I ordered her, “and you,” I said to Bud, “are done.”
“You get yourself rinsed off,” he mimicked, “and you   are    done.”
My blood ran cold. His echolalia was back. I turned toward the toilet because I thought I was going to be sick.
Bullying his sister is the second most inflaming thing Bud does when he’s not feeling right. Echolalia is, by far, number one. It scares the living shit out of me, like mental illness.
For some reason, all I could see inside my skull as Bud sing-songed the report of his panic, was that hatchet-faced-bitch art teacher at the mainstream kindergarten where he’d had his crisis, a snotty woman ten years younger than me with no kids of her own, who said, during the final meeting about Bud, “I’ve worked with children who’ve had ADD, retardation, even schizophrenia! So I understand how hard this is for you!” And then she promptly filed a report alleging that Bud, who was FIVE, had assaulted her.
It was, without a doubt, one of the worst moments of my life.
I now held on to Bud’s wrist and looked as hard as I could into his face. Was it all gone? A year of therapies? A year of progress? A year of reinvention, by all of us? Was that sinister little troll of a teacher right? Had Bud fallen through a wormhole, backward, to some smaller, fractured, unspooling self who bit and spit and hurled his body as if the shapes of his feverish limbs could spell out Fuck everything!?


My sister’s first and only speech for years was echolalia; the exact replication of heard verbal expression. That was not the case with Bud; he blended it with normal speaking, until his crisis, when it became a chronic response to anxiety; we did not know that, at first; we thought he was being a prick. Only later, during deep delving evaluations and long, exploratory discussions with the professionals who treated him, did we come to understand. Stress short circuited Bud’s brain just as if he were a little robot that fell in a puddle, sparks flying off his head and smoke coming out his ears as he called out a kind of Mayday! Mayday!
Except that you would have to have said ‘mayday’ first, for the echolalia to be obvious, but you didn’t, because you didn’t know. So you said things like, “Stop throwing metal cars!” and he said back Stop throwing metal cars! which was as close to Mayday! as his anxiety-fried brain could get, and he laughed, and his eyes bulged with fear, as all the other doors in his brain slammed shut.  
And I'd forgotten all that.  
So I dragged him by the armpit, wrapped in a towel, to my bedroom, and shoved him in there, and closed the door. And I doused Moopy with warm water and stuffed her into pajamas stuck her in a chair and shoved a movie into the DVD player and slammed a bowl of cheerios down on the table in front of her. She gave me a dirty look, but turned her attention to “Cloudy With A Chance of Meatballs” for the seventeenth time.
I went back to my bedroom door. Something about the way my hand looked as I raised it, tanned, with a clean manicure for a change (that I’d found time for, but not exercise,) sent a chill of de ja vu through my chest. I opened my door. The room was still dark. Bud sat on the bed, in his towel, looking out at the rainy evening.
“Mommy,” he said. “Do you want to know about a bird that I made up?”
I went to him at the bed, and rewrapped the towel around him, and took all sixty pounds of his golden skin and green eyes and long legs into my lap, and I rocked him.
“Well, do you?” he asked me again.
I said, “I do.”
He had not fallen through a wormhole. He was right there in my lap. He was just having a hard time.
And I certainly know how that is.


A year ago, I had an inspiration to go to nursing school. I convinced myself that if 20-year-olds could do chemistry, so could I, and I indulged in fantasies of myself and Bruce going out to dinner once a week, dropping $100 on baby-sitting without stressing, because of my awesome disposable income.
Aside from the fact that the reality of chemistry shredded me in the first two weeks, my cousin’s sudden death that Labor Day weekend knocked me out. He’d been a big, athletic, hustling, bombastic lawyer with a brilliant smile, a gorgeous young family, and a mansion full of hard won success. He died on one of his toys; his motorcycle. I was not close to him, but it froze me in my tracks.
I could not believe that anything could take him down. Of course, we all get taken down, but my cousin had been a force, the kind of guy who bends every will around him to his own, with a big, cheesy grin. He was a man of appetites and energy, and he liked guns, and engines, and speed.
A few weeks after he died, Bud fell, to whatever it was that had taken hold of him; his DNA, time, circumstance; the conspiring of his own evolution brought him to a screeching halt. I yanked us both out of school. Time stopped.
From that moment on, I had no expectations. I did not know what would happen to any of us. I had my work cut out for me, finding help for Bud, finding a school, and I did it; robotically, adrenaline-driven, but I did it. And I am still doing it. And Bud is good. He has his ups and downs, sometimes thirty in a day, but this limbo before school starts up again will soon conclude. I know this now. He will return to his routine. He’ll regulate. He’ll stabilize. He will be himself. It will be okay.
It’s just not entirely evident to me yet where I fit in, or who I will be, when, if, I emerge. I’m not going to be a nurse. I don’t want to do it any more. I have not accomplished yet what I had hoped, but I have more chances coming.

1 comment:

Cindy said...

In some ways, I feel your pain. In others, I just cannot. Somehow, we will muddle through and come out OK. I understand so well about losing yourself and not taking care of yourself. I'm in that boat with you. Keep smiling and keep loving those beautiful kids! (I grew up with 4 siblings and the fighting. And my kids' fighting still drives me crazy!)
Miss you.