Sunday, August 28, 2011
she had a choice, she did it to herself...
How dare they? The audacity that's inherent, the smug certainty that any one of us stacks up to more against whatever unseen hells beset her, is pompous bordering on demented. Who hasn't loved, lost, forgiven, or stayed enraged at a person consumed with destruction? Haven't we all gone on caring about those who've hurt us, who've hurt themselves, who gave up, who couldn't get well? What, about that person who we never gave up on, was any different from any one of us?
Nothing, i would bet, because i'm becoming convinced that every thing is random.
I loved an addict for four years, in my early 20's, and it was horrible. I was afraid of him and utterly smitten at the same time, and he used it against me. It took me years after he was gone to admit to myself that he slept with a lot of other women, and probably endangered my life in a number of ways. I was able to forgive him after his death fairly quickly, but death opens that door.
It took me much longer to forgive myself. I didn't love him because I was a loser or had no self esteem or couldn't do better (though maybe those things were true, regardless.) I loved him for the blinding flame inside himself. He suffered a wretched childhood and came from genes predisposed to addiction, if family history means anything. I've known a slew of other people with the same credentials who didn't shoot themselves full of poison in their mid 30s, people who sought help, pulled themselves up from despair, and soldiered on; there is no single truth, no summary why, that explains that he could not. There just isn't.
I used to allow my love for that person to define me as a failure. Now, in my astonishing life as a wife and mother, I still feel a sense of failure every day, a gnawing worry that i don't have what it takes to care for this family, to make it as a grown woman. But it's not because I loved someone who was in too much pain to go on. The willingness to love someone despite, and because, of their broken soul, even for the few years that I clung to him, is one of the things I have going for me.
What was Amy Winehouse afraid of? I don't think I can stand to know. It could have been as banal as crummy reviews, or as keen and ferocious as illness or abuse, or something else entirely that we've never considered. But I do know that it's impossible, at least for me, to imagine being her, and stopping; cleaning up and stepping out into broad daylight; I couldn't have done it. Everybody waiting on you to fuck up, tapping their toes, mistrustful, sanctimonious...
Maybe she was afraid of getting well; it might have been worse.
Wednesday, August 24, 2011
Sunday, August 21, 2011
For the first time in my life I find myself consciously filled with gratitude for the law. F.A.P.E., Free Appropriate Public Education, for Students With Disabilities, Section 504 of the Rehabilitation Act of 1973, means there’s a good chance Bud will be able to stay in supported, protected school till at least the age of 18, and possibly 21. With a childhood and adolescence of fortification and a hard won tool belt of coping skills, adulthood will be up to him. I’m optimistic, mostly, that he’ll find a safe, tolerable, legal way to make a living, and people to love him other than us.
For children whose Autism restricts them to a narrower set of skills and options, I want more from neurodiversity; more good laws, more money, more humanity, more love.
Friday, August 19, 2011
Swimming means more than it should to my husband and me. But what doesn’t? Once you find out you have a kid with diagnosable conditions, that is, traits that can be collected into lists that have actual names, especially if the traits can be assigned and reassigned simultaneously to more than one list, so that really, you could meet, say, half a dozen people and tell each one your kid has a different thing, you start to pick at every little gesture, twitch and verbiage that emerges.
What you want to know is, what does that mean? And, why’s he doing that? Then you say, oh fuck.
When Bud’s eyes bug out of his head and his tongue wags and he retracts and extends his neck like a turtle on amphetamines and keeps accidentally hurling his pencil across the room while we’re trying to do homework, that means Tourette Syndrome. Seeming too rude and poorly parented to make eye contact or deign to say good morning to the doorman, for the zillionth time? Asperger’s Syndrome, is why he’s doing that, or rather, not doing it. Running up and down the halls of our apartment building, at breakneck speed, when people ask him how school’s going, is anxiety. And singing impromptu rap songs about his pre-K crush while holding a half-chewed dog toy for a microphone, almost two years after pre-K, and being unable to stop singing it, muttering it, or shouting it, through dinner, through bath time, and on into book time, that’s OCD; Obsessive Compulsive Disorder.
I’ve stopped saying oh fuck for the most part, largely because of swimming. Bud treads water, like a metaphor for survival on the surface of the known world; seeing him do it gives me vertigo. Nobody taught him how; he was empowered by jealousy. His sister, Moopy, 20 months his junior, started swimming entirely of her own volition at eight months, in the bathtub. By 17 months she was leaping off the edge of the 4 ft depth at our pool club, crashing into the water like a frozen chicken, and pollywogging her way to the other side. And there was Bud, standing on the pool steps, or wall-crawling, or hopping up and down shoulders-deep in the shallow end, watching everyone watch her, be they aghast or amazed at the swimming baby; boy, was he pissed.
My father said, “Let him get mad.”
Like we could stop him.
By the end of that summer, Bud was pushing off the side and dog-paddling rabidly to my father, ‘Papa,’ who would not stand closer than the middle of the pool. Bud was wild with sensory overload and thrill, thrashing, splashing, hurling his body through the water like a joyful animal, growling, spinning, rolling in the water, dragging Papa down to the bottom, diving off Papa’s knees, churning himself into a water dervish. He’d gone from hesitant to voracious. After two hours in the pool, three, we’d have to drag him, crying, out, and he would fall asleep in the locker room as we dressed him. He and Moopy would sack out for two hours in their car seats afterward, their fat little faces sweating.
Sometimes, Bud got water-crazy to the point of vomiting so that we had to watch him closely for signs of gagging on swallowed water, grab him, and toss him out of the pool so he could barf up whole lunches of mac and cheese. The kind lifeguards dumped barf-smell-eradication-powder on the mess and cleaned it up two or three times a week, much to our deeply humbling gratitude; still, swimming was revelatory.
Swimming is power. Cannon balling into the deep end, breasting the entire length of a college pool. Now almost six (with adequately developed gag control,) Bud takes private lessons with Imagine Swimming, Inc., at Hunter College, to learn actual strokes and real diving, because he’d much rather argue with my husband and me than let us teach him anything. His coach Eric has him slicing down to the 5 ft. bottom to get the rings, and hanging on to the diving platform then pushing off backwards into his “upside down roll,” because Bud is not afraid.
Anymore. Of that. Many things, many things, make Bud afraid; more like nervous. People he doesn’t know or didn’t expect to see, a sudden change of activities, too much butter on his crackers, a haircut, homework, buzzers, bells, car alarms, loud toilets, jack hammers, too much sunshine, too much music, the supermarket, the wrong socks, two-wheeled bikes, balls flying at him, crowded playgrounds, criticism, tart food, and did I mention homework? These things and more make him too nervous to function, too nervous to stop, too nervous to speak, too nervous to cease yammering really loudly, sometimes almost too nervous to breathe; but they aren’t in the water. In the water, Bud is free.
But I always thought swimming was freedom, long before Bud was even in my mind’s eye. I love to caress and handle in my brain the notion that, as I was born with all my eggs like most women, Bud was always in my body, waiting. Maybe he was swimming along with me, all those years I spent in suburban pools and pebbly Long Island beaches. Maybe he remembers the storm in Key West, the hurricane that swirled the sky one evening, red and violet and black, colors I didn’t believe the sky could be until I saw it, as I stood on the little dock just off the roadside beach, the wind whipping me, shaking my clothes and plucking the fine hairs on my skin into goose bumps. I stood under the storm mesmerized, and suddenly I dove into the water, and I believed, and I was right, that I could swim among the crashing, taunting breakers. Maybe Bud has breakers in his DNA.
When I was 14 months old, I fell into our pool. We had a huge in-ground swimming pool in our back yard that family lore holds was only possible because my father, a carpet installer who had a tiny store from which my parents eked out a living, was able to barter with an Italian landscaper guy he knew who lived way out east in Rocky Point. It was a huge pool, the most impressive in our town by far, with a mysterious light in the deep end for night swimming that made the whole thing glow blue. One spring, my parents had just taken the cover off to observe for seasonal damage, and left it off. My mother was weeding the brick path that led down the slope of our yard to the pool, and my sister, who has severe Autism, Turner’s Syndrome, and schizophrenia, was the healthiest of her life at 14 years old, and was in charge of me. In diapers and blue corduroy overalls and a turtleneck shirt, I marched with interest around the perimeter of the pool, and tumbled in.
That the water was low was more of a problem, not less. I could actually swim by that age, like my daughter. My father had me in the pool all the previous summer, blowing bubbles in the crystalline water and splashing in his arms, floating and shimmying from one end to the other. But now, in a soaking wet diaper and heavy clothes, well below the graspable edge, I bobbed, and my sister, without cue from anyone, must have quickly lay down alongside the edge, reached in, grabbed me by the back of my overalls, and hauled me out. My mother, unaware, was still weeding.
My sister brought me over to her, and according to my mother, said, “The baby fell in the pool. I will change her.”
She saved your life. Whether or not my sister really saved my life, if in a moment I’d have cried out and my mother would have heard and come to my rescue, doesn’t matter; the story has to start somewhere and my mother picked where.
Because that’s what you do. You pick things, and choose things, to help you love. And live. I know my mother did this; I learned it somewhere.
In her 20’s, my sister could ride the train. My parents put her on the Long Island Rail Road in Port Jefferson, an end-of-the-line stop 60 miles from Manhattan, that’s a two hour ride, and she would sit there, staring out the window or at an empty space, waiting, peacefully, earnestly waiting for Penn Station, where she would get out, and march robotically to a meeting point to hook up with a recreation group, which would then go see an ice skating show or the circus. She could do this without incident, despite an IQ in the low 70’s, little ability to read and none to communicate with strangers, delayed, mechanical speech, anxiety, OCD, and what the hell, one kidney. She could also get back on the train and come home, although my parents only permitted her to do so in the afternoon; for night events my father would drive to the city, and wait in the car for her outside Madison Square Garden, reading a spy novel.
My sister changed my diapers when I was a baby, bathed me and dressed me and pushed me in the stroller. Later, she walked to my school to pick me up and walk me home. She could chlorinate the pool, vacuum and dust, make spaghetti, pancakes, and boiled eggs, and find and buy up to four items in a grocery store. Did my mother put her to work? You bet she did. It’s called participating in a family. It’s also called independence. My sister could walk to the library and take out magazines to leaf through, watch her own television, use a tape deck and a record player, type badly, shower, comb her own jet black, Chinese-straight hair, choose her clothes and dress by herself. She could put on eye shadow. She could paint her own nails, and she had delicate, tan little hands back then, which my mother loved. She could not negotiate a nail file, so my mother, gently, did that part for her. She couldn’t swim, or ride a bike or ski, but my mother didn’t care about those things; she cared about beauty, and my sister, bird-like, with gigantic, somber brown eyes, that black silk hair, and freckles, was certainly beautiful.
Swimming is my equivalent of my mother’s belief in beauty, but I’m luckier than she was. Bud happens to be awfully handsome as well, if I do say so myself. He’s bigger than many boys his age by ten pounds of big bones and muscle he gets from practicing the ambulations of every kind of creature; it may look bizarre, but you can get really strong by imitating Australophithecus all day, leaping, squatting, climbing, and beating your chest. He has my husband’s long legs and high butt, and my father’s barrel chest. He has sandy hair that he’s determinedly growing long, hazel eyes, and a broad, symmetrical face made just a little pretty by a delicate nose, long eyelashes, and kissy lips, like a junior Brendan Frazier.
Not that I’m biased, but Bud gives back a lot. He can’t tolerate touching from outsiders, but he will hug the living shit out of my husband, Papa, and me, climbing up our bodies like a chimpanzee, constricting us with his octopus limbs, squeezing our faces and banging his cheeks against ours, saying, through teeth on edge with the intensity of his feelings, “You are so cute! And you’re very chubby! And I have to attack you because I love you so much!” Fifty-five hurtling pounds of free-falling unregulated emotion may not be adorable to others, but in my house it’s a jackpot.
Because the other face of Bud’s brute glee is terrifying. His real fears, not the petty ones about socks, crackers and jackhammers, but the deep ones, of people not us, reveal themselves as animal violence. My dear friend Dr. Penny Carmichael, who is a psychiatrist at one of the most hard core urban ERs in New York, warned me at the onset of Bud’s behavioral crisis when he tried to start kindergarten, that young children (he was five and a few months at the time,) are “extremely primal,” and that word, primal, is Bud. He has never recoiled from a confrontation, and in the worst of his implosion at that school, he brought the full force of his totemic, corporeal fury down on his offenders. Human speech went right out the window and he transformed, truly blurring the distinction of species, into a raging Saber Toothed Tiger, hissing, roaring, lunging, and biting his antagonizers (who fortunately were always adults.) At perceived threat, he abandoned civilization and became utterly wild.
“He’s not having a thought disorder,” Penny said, when I explained what I saw of my son, what I would not have believed otherwise. “He’s just afraid.”
And she was right. I was also afraid. But I held on, and Bud, did, too. In spite of the adrenaline that spilled over from the daily onslaught of panic attacks that we finally heeded, yanking him out of mainstream school, the flood in his blood of chemicals that caused him to run the length of a Baskin Robbins one evening from cash register to front door 29 times, I counted, yes I did, underneath it all, Bud knew what was going on in himself; he was scared shitless. It was fight or flight. He was little, but he was tough, and he fought.
What part of scratching the principle’s face almost deep enough to draw blood, of running out of the school building into traffic screaming “Mommy!” is hard to understand? It’s communication, which, handsomeness, swimming, death-by-hugging and raw animal self-preservation aside, is the single greatest attribute Bud has going for him. The chimpanzee thing, we love it, and the willingness to defend himself, too, now that we understand; but these are the irony and the counterpoint to Bud’s core, which is language. His verbal IQ score was 137 (and there I go, picking and choosing; I despise testing but I could brag on that 137 till the cows come home,) and that makes him special, not just to me, but in the world. It sets him apart from a lot of children on the Autism spectrum, and a lot of all children. But the mortar that makes his crazy word data-base more than just a party trick is his love of meaning.
At his most peaceful and introspective, he has cried at the unfairness of the lives of mayflies, which only last a day. We were riding in the car one afternoon, he, Moopy, and I, with our dog, Tigress, down to the La Guardia Airport Landing Lights, a little stretch of land between Jackson Heights and Astoria, Queens, designated for small light towers that help guide airplanes toward the runway. That’s three precious city blocks of flat, green room with a few trees and some well placed, climbable boulders, for kids and dogs to run free, for teenagers to hang out, for anybody around to have a picnic, play ball, or read a book, so long as you don’t mind the air- raid soundtrack and the dog poop. Bud, who in an ideal world would live in a cabin in the woods or in a small, secluded beach town, loves it there, but he emanated sadness on the way, and I could see his eyes welling up when I looked in the rearview mirror.
“What’s wrong, Chief?” I asked him.
“I’m very sad about mayflies,” he said.
“What about them?”
“It’s sad that they only live for one day, and then they die,” he told me, with a surge of anguish, and a few tears shook free into the air as he rocked twice, hard, slamming himself in his car seat. “I learned it in our bug unit in Miss Emily’s class today.”
“Well,” I asked him, appealing, I hoped, to the long narrative of the life cycle, which he loves, “what about destiny?”
His face relaxed a little bit and the sorrow in his voice abated somewhat. “What’s destiny again?”
“As I understand it,” I said, “it’s doing your whole job on earth. Everyone has a job. Is it possible that the mayflies are able to do their whole job in one day?”
“It is possible,” he said, the phrase ascending from his feeling. “But I can’t do my job on earth in one day. My job is much bigger than theirs.”
“What is your job on earth, Bud?” I asked him.
“It’s to be myself,” he said.
I never told him that. It was his own idea. As I floated for a moment in a kind of hypnotic relief at what he’d said, I passed several parking spaces, circling the field.
“Mommy!” Moopy spoke up. “Why you are not parking dis CAR? I WANT TO PLAY KICK BALL!”
“Sorry!” I blurted, and took the next space I saw. I hauled open the side door of our minivan and the dog, part Mastiff, part Staffie Bull, shot out into the open field, her jowly, loose face flapping back to expose her wicked looking teeth as she hit top speed. She played tag with Moopy for a few minutes as Bud scanned his bug book for the picture of mayflies. We gazed at it together.
“Sometimes part of my job is bad behavior,” he said.
“That’s part of everyone’s job,” I said. “I have bad behavior sometimes, like when I fight with other car drivers on the road, or when I yell at you and Moopy. I know you love me anyway, though, and I love you all the time, no matter what you do.”
“Mommy. Stop talking about love all the time. You act like talking about love is the most important thing on earth. But love, just love, is the most important thing.”
I stared at him.
“Don’t tease me. Just don’t talk about destiny any more. Talk normal.”
“Sorry,” I squeaked. “You wanna get out of the car?”
“Yes,” he said. “And I wanna get ice cream when the lady comes with the cart. Why is that lady with the cart so short? Why are all the ice cream cart ladies so short? Is it because they’re all from Guatamala?” And with that, he threw his bug book on the floor, unbelted himself from his car seat, climbed out, and began marching around the field, prattling at me, and then not at me, about prehistoric animals he created in his imagination whose fossils were found in South America and which do not resemble any animals alive today.
The next afternoon, at his swim lesson, Bud stood on his coach’s shoulders and dove off, down to the bottom of the pool, grabbed the rings, shot upward, broke the surface, rings in hand, and smiling, shook back a switch of wet, sandy brown hair from his face, his shoulders glistening as he tread water, and he looked sixteen years old.