Sunday, August 28, 2011

On The Death of Amy Winehouse

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


The Fight For Freedom and Love On A City Sidewalk
Hopping down the block like the sidewalk’s on fire,
a puppety girl trips as her left foot flaps,
and goes spastic airborne, fearless
of falling
though her mother dives under her to fix
it with her body and paranoid love.

The catching motion the mother produces from love;
Has a baby tumbled from a window of fire?
Her hijab and jilbab ripple but with pins are fixed
against any instance of flapping
exposure, of wings without synch, of falling,
the mother, the daughter, the suck and surge of fear.

That’s the life of mothers of broken children; fear.
Mothers of rioting cities, husbands spat loveless
from bleached bone buildings like tongued rice fall
and are flicked into the outrage of citizen fire.
But insurrection is not for the US. Here, we flap;
flags and garments in wind gusts, fucked up synapses that don’t fix.

Flags, broken brains cast aside unfixed
just bide, fabric, liney meat, ticking, waiting for fear
to reveal itself, giggling behind a flap,
a flag, skin, bandages, banners for love.
Mothers, dictators, kids on fire;
every body falls.

One fall
I learned my kid can’t be fixed.
My brain was on fire.
I was throwing up with fear.
I was immolating with love
for my kid, who does that thing, that tell-tale flap

same as that marionette girl on the avenue, the flap
of her skinny fingers, splinter factions, falling,
leaping streetward? Don’t crash your face, Love!
Mothers by muscular uterus fix,
hurling handfuls of gravel shouting Fuck these thousand fears!
New York is on fire and nobody knows; Egypt, in front of everyone, is on fire.

I love my boy, how his toes flap.
The scarved mother loves the girl’s grimace, and we fall
to fixing them; mother is love, work, and fear.

Sunday, August 21, 2011


Trading Traits for Wholeness

My son Bud has Asperger’s Syndrome, which is a type of Autism. He also has Anxiety, in the form of free-floating nervous agitation that can attatch itself to any random event on a given day. He has OCD, too; Obsessive Compulsive Disorder, ‘of the mind,’ as I think of it; a rigidity of thinking, as in, don’t mess with his concept, don’t ever try to play him for a fool. And he has Tourette Syndrome, which makes him twitchy, when he’s nervous, which is often; lots of eye bugging and elbow jolting. My husband and I did not know that any of the oddball, difficult behaviors Bud always had comprised a conditional name, until Bud went into kindergarten and had a nervous breakdown; we had a family breakdown, too. We removed him from the mainstream school and began a fractious, panicked odyssey with the medical, behavioral, and educational professionals who would give us that name, Autism, which would in turn get Bud into a wonderful, life-altering school.

My son is Bud, and I like him a lot.

Finding The (Special) School in Brooklyn was not like deliverance; it was the real deal. I don’t ‘believe’ in stuff, like philosophies or gods, in fact sometimes I can barely make sense of objects and people in front of my face; but starting Bud at Special, where his intellect is respected, his struggles are met with compassion, and he has lots of time in the gym, transported us all from chaos to peace.

By February, he was settling in there with antennae-raising ease; when would the other shoe fall? It didn’t (for the most part.) Bud was happy, for the first time in months, and as Bud goes, so go the rest of us. Now I had a little time to catch up on Autism and disability readings (oh, super.) As I searched for my own son among the blogs, articles, and social media posts, I often found him, and that rattled my cage but good. Quirky and singular to be sure, Bud also conforms to whole rosters of traits for which Autism spectrum kids are famous; that’s good news, and bad news.

Good news; Oh, my kid has Autism! Well now things are starting to make sense, and we can work with him. Progress! Cool.

Bad news; Oh, my kid really does have Autism. He’s not a supreme being from outer space. Shit.

The emotional roller coaster of the Autism parent’s learning curve could drive a mother back to smoking (what?) However, I also discovered the phrase ‘neurodiversity,’ which was different kind of revelation all together, but I’ll get to that.

Jimmy, my X-husband, a deeply valued if rarely seen friend, had been keeping up with me via email during all this, which was a lifeline at the time. My birthday was the nostalgic reason for his most recent message; the Internet is the best relationship we’ve had. Unlike our marriage, we now share and laugh, from the safe distance of wholly other boros and lives. It’s perfect for him, a social-phobe who keeps his feelings and artistic gifts hidden from the world. We share a Zodiac sign, so it was his birthday, too; a chance to taunt each other about the rapid approach of old age, and death, which Jimmy liked to say couldn’t come soon enough.

We embrace dark humor, Jimmy and I, like many Pisces, yet are both given to sentimentalism; it’s that kind of Piscean thing that made us wrong for each other in the real world; no balance. Dramatic, self-pitying, we’re also paranoid; but I don’t believe in stuff, right? I mean, just because two people with the same birthday are morbid and excessive doesn’t make the Pisces profile true, does it?

The thing about the Zodiac though, as something akin to a guiding principle, is that its trait-based premise is a little compelling, because of the annoying frequency with which it’s spot-on.

A Zodiac website’s description of Pisces as otherworldly… lonely in a crowd… struggles with reality… creative… deep… a tendency to be the cause of your own unhappiness… fits me, and Jimmy, so snug it hurts.

And take, for example, Gemini Bud and his Gemini grandpa, Papa (or take them for an afternoon… or a weekend… I’ll pay… I’m kidding!... sort of…) who are by turns gallant, rude, kind, combative, gentle, abrasive, sullen, charming, broken, and strong. They are, like Gemini itself, The Twins.

The website describes Gemini as people who may think too much or over-analyze… enjoy companionship and dislike being alone… need constant excitement and stimulation… tendency to become bored...

Replace ‘companionship’ with ‘audience,’ and you’ve got Bud, and Papa, to a ‘T.’

I haven’t spent lots of time looking at other signs’ traits, because as a typically navel-gazing Pisces, I’m too interested in me and mine. But if feels meaningful to me that I have lots in common with other Pisces women I’ve known, that man-Pisces share stuff with Jimmy, that the Gemini are all a bunch of hard cases, and it made me start to wonder, as I came out of my post-diagnosis fugue, about the constellation of people I love, the central star of which at that moment was Bud...

What do traits mean?

Jimmy doesn’t deal with people, which I thought at first was a tough-guy act, and later realized is central. He barely ever makes eye contact, and in fact I knew he really wanted to be close to me when he started forcing himself to look into my face over the many, many drinks we had in many bars, which he needed, to be able to talk to me at all. Jimmy’s also a musician, completely self-taught because he detests teachers and suffered in school. He plays guitar, banjo, and mandolin, and has catalogued in his mind the lyrics to thousands of rock, country, and bluegrass songs. He’s memorized pages, whole scenes, of Shakespeare, just because he likes it. He loves animals, and forests, and had the nickname ‘Finder of All Things Lost,’ for his uncanny ability to locate any misplaced object, any where, any time, instantly; suffice it to say, Jimmy is a weird guy.

Or he just has Asperger’s Syndrome, like Bud.

You see where I’m going with this? I’m in no way qualified to diagnose somebody, but hang with me. Because what I’m proposing is that the traits don’t make the man, or the little boy, for that matter; I think it’s the other way around.

Jimmy kind of cares about Bud, in that creepy telepathic way that hermits love, by tasting the air, smelling with their hearts. A false extrovert compensating for social terror myself, I understand this deeply; I feel it when my far-flungs are falling, and call or email at the right moment, like Jimmy does. It was a psychic salve to get messages from him because for months, I hadn’t spoken to anyone except doctors, evaluators, and administrators, many of whom I never actually saw; it was like talking into a buzzing, sinister hive of disembodied voices about what, exactly, was wrong with my little boy, and what I was going to do about it. My husband, Bruce, was so busy diving into the fray with Bud, and Moopy, our 4 year old girl, the moment he’d get home from work so I could hurl myself back into the storm of researching schools and coordinating appointments, that I never even got a chance, those months, to keep him in the loop of what I was going to do about it. I was just trying to do it, as fast as humanly possible, or faster. Telling Jimmy about it all was like an affirmation; I wrote it, and Jimmy read it, and that felt real.

First and foremost, I told Jimmy, I was going to get Bud into a school with real teachers and children if it killed me, because the only other choice was home-school, which was no choice at all, though Bud’s traits, taken out of context, might have made him seem the perfect candidate for it. After all, his anxiety went into overdrive around new people and surroundings; his fear manifested as hyperactivity, which, when criticized or suppressed, could morph into animal-spirit-driven violence like a Power Ranger gone to the dark side. We had seen what happened to Bud in a classroom; what I had to hang on to was the conviction that last time, it was the wrong classroom. I believed, and I was correct, that in the right one, all of Bud’s traits, some powers, some fears, could come together, and carry him forward.

Context is everything. Here’s me; I know tons of people in the neighborhood. I can’t gab on my cell while walking the dog or unpack groceries from the car without encountering pals who brighten on sight of me because I am a fun yenta! I am! I love to yak and chat and bitch and gossip and I am funny! And I’m a good listener. I remember everything and I ask all the right questions. Everybody’s kids are happy to see me. And astonishingly, I’m never in a rush… outside.

But indoors? I can’t even be with people I like and have no gripe with for more than a few minutes (without booze,) because my anxiety takes the form of something like claustrophobia; call it cabin fever. I start to have trouble breathing, I get irritable, nervous, even depressed, and I start pacing around looking for chores that need to be done because if I stop moving I will choke like a shark. So the prospect of being stuck inside, with just one person, my passionately beloved, totally unregulated, demanding, irritating, brilliant, button-pushing, and at the time of the school search, still traumatized son, charged with the tasks of teaching him to write, spell, add, subtract, cut with scissors, color in the lines, and not strangle people, by myself, in our apartment, FOREVER, was terrifying.

A school with not more than six children in the classroom, with at least two adults, and no bells, and no getting on line, and no command-delivered directives, no large-scale lunch rooms, no no-recess (good lord,) no no-gym, and no punishment, would have to be found; it would have to. Because as much as new-everything scares the crap out of Bud, he also gets cabin fever like I do, and he was losing his marbles, stuck home every day, and he had to get out of the house and so did I because I am also a person. I am one person. And I can’t show him that he is a person who can cope with the world by hiding him from it.

Special School, I told Jimmy, was practically made to order. “He takes a little bus all the way to Brooklyn every day,” I wrote, “and he has his little classroom of five kids and two teachers, and it’s all very orderly and routine, which he loves, and nobody calls to tell me my kid is weird and bad, because he goes to weird-bad-kid school now, and that’s just the way it is.”

I know it’s glib to say that’s just the way it is. It isn’t that there’s nothing wrong with Bud; of course he is at odds with the majority of the world we know, here, in an urban enclave literally overrun with children; he doesn’t fit in. The traits that make him startling, like being hyper-verbal, intense, demanding, and extremely imaginative, also make him lonely. Most people are doing and thinking things a certain way and he isn’t. We can call that something wrong or we can call it a ham sandwich. But in the right circumstances, Bud can have peace and learning and fun like everybody else. He takes his traits wherever he goes, but in the right context, those traits comprise a thriving child, not an alienated one.

For my part, I know Bud’s not bad (though I do think he’s weird... kidding! Again!.. sort of…) I said it that way to Jimmy for a reason; I have a deep need to appropriate words that threaten me and then wave them around menacingly at other people, even people I love. During Bud’s crisis at, and then removal from, the mainstream kindergarten, nobody actually said the word ‘bad,’ about him to me (they wouldn’t have dared,) it just saturated every conversation; it was the only trait other than compliant that school believed in. By now, I’ve come to learn that Bud is almost never bad, even when his behavior is atrocious; at those times, what I am seeing is balking, not volition. So I speak of Bud and badness to people I trust as shorthand, a code, to get my bearings, and I speak of his badness to people I don’t trust so that I’m the one that gets to own the word.

But I seem to be putting the word aside these days. Bud lives in a blessedly mixed world now, reasonably protected but not isolate, and should stay there for as long as possible. He is learning at Special, to read and spell, math comes easy, puzzles, coloring; the kindergarten gamut. The real work for Bud isn’t the material, anyway; it’s the ability to sit at a desk for four minutes, ten minutes, twenty some day… and get something done. But until then, when he does struggle, Miss Sharon tells me things like, “He needed a break, so I gave it to him, and then he needed another break, and he ended up needing to finish the work during recess, so he saw that he lost some recess time, and next time, I’ll try to help him remember how that wasn’t what he wanted.”

Wouldn’t it be something if all kids could learn the progress of consequences with integrity, could be taught to identify their own private feeling of loss, rather than just be punished? Imagine a childhood without humiliation, how unwounded a person could be.

I told Jimmy about all this, about the gym at Bud’s school, the swimming and the karate, the therapy dogs that visit, and the photography walks, the trips to the library with pizza on the way back. I told him about the OT, Occupational Therapy, as in, how to hear and feel your own body and manage it a little better, with help, with that damn sensory swing. I told him about Speech Pragmatics, as in learning how to talk to people rather than prattling in a panic and finding yourself alone on the playground, or hitting, or being hit, again.

“He has counseling once or twice a week with a psychologist,” I wrote, “where he does get to be his full-bore Asperger’s self, making up prehistoric animals and pacing the office while giving a lecture on the Mesozoic Periods. The psychologist told me she has to get coffee before her sessions with him so she can keep up, that she’s always afraid there will be a quiz.”

“Man,” I went on, “Autism is the best thing that ever happened to that kid.”
Jimmy wrote back, without irony or additional comment, “I wish I could have gone to that school.”
I responded, “Me, too.”

I wish that Jimmy and I both could have. My own childhood style of anxiety and loneliness was obsequiousness to adults, avoidance of other kids, compulsive overeating, and failing a lot. For his part, Jimmy chose truancy. All we can do now is chalk it up to less being known about the way kids struggle, back in the 70’s, and less still in the 60’s, when Jimmy was a kid.

And speaking of kids who struggle, somebody else who turned out pretty ‘special’ in adulthood but who ‘passed,’ as they say, as a kid, is my husband.

Talk about traits; Bruce was a great student, had few friendships, studied hard. Who had time to play? The two kids he did like spent their time with him painting painstakingly accurate Star Wars murals on their bedroom walls and making 16 mm films about cowboy gangs or alien abductions. As a teen Bruce did not party, and it served him well. He went to UC Berkeley for architecture for a while, then graduated from San Francisco State in filmmaking; not too shabby.

He also went on NO dates during those years, and made NOT ONE new friend in college, not least because he chose to live off campus, with his elderly aunt in her cluttered San Francisco home. Despite a reasonably successful career in cable television that unfolded with mounting promotions and awards, he became increasingly socially awkward as time passed. He married the first woman who would date him and then they divorced; he followed a subsequent failed romance across the country to NYC; and then he found himself alone, well employed, at the prime of his life, emotionally paralyzed.

Asperger’s? Maybe. He was much more than shy, to be sure. He cultivated highly specialized gifts that allowed for an isolate lifestyle and sought the comfort of the familiar at the cost of human interactions; poor eye contact, even what I call poor ear contact; Bruce, Jimmy, and Bud all never hear me (but maybe I’m just annoying.)

As a group, what I really notice about these guys is not only that I love them, but that they share traits, to greater or lesser degrees (and they’re three different Zodiac signs!) So…

What do traits mean?

I’m not a wacko. I’m not proposing that the Zodiac is as relevant an evaluative tool as the research and tests central to the study and treatment of Autism Spectrum Disorders. It’s just that I think we’re not done; and by ‘we’ I mean the everybody who thinks about Autism. Traits are just traits. They mean themselves, no matter how typical, or not, the possessing individual.

But Autism is, every time, a consummate, unique gestalt.

As is a human being.

And that brings me back to neurodiversity.

Todd Drezner, Brooklyn dad of a child with Autism and filmmaker behind the documentary “Loving Lampposts: Living Autistic,” gives us to understand neurodiversity as a way of thinking about people that includes different kinds of minds, akin to the phrase ‘differently abled.’

For example, a person with Autism might enjoy the lampposts, or the benches, in a park, almost exclusively, whereas a person with more generally familiar thinking might love the great big sprawling park as all of a piece. Similarly, a person who is blind might use his hands to learn about a face, rather than his eyes; and while it seems harder, to a seeing person, to learn a face by hand, to a non-seeing person, it’s just his way.

Drezner agrees with me when I add that there’s no real reason to destabilize the non-seeing person by fixing (changing, medicating, altering) his eyeballs. His hands work well. In fact, why not give the non-seer five extra minutes to feel your face? Maybe you’ll like it! Maybe you and your special person can put on blindfolds some evening and feel each other’s faces for a while and see what happens… (Whoops, did I say that?)

Many writers, on the topic of neurodiversity, quote Harvey Blume and Judy Singer with regard to Autism, on evolution’s necessity of difference. Definitions of this relatively new term are legion, but they all seem to me to boil down to what neurodiversity isn’t; discrimination.

And that’s good, but not enough.

I believe, and I’m hope I’m right, that neurodiversity is the relatively simple idea of accepting the wholeness of persons, specifically ones with Autism. It’s not, as some bloggers and advocates fear, about ignoring it, or abandoning therapies that help people with Autism feel more comfortable, capable, and connected. It’s not about forgoing enrichment. In fact, it’s the validation of help. It’s the strangely obvious notion of just including, in our comprehension of people not ourselves, all the kinds of thinking represented on the Autism spectrum as belonging to individuals, and investing them with equal value to kinds of thinking belonging to other individuals.

Like, We’re here, we’re Autistic, fish.

Or, catapult. Meat loaf. Ramphoryncus (it’s a prehistoric ancestor to… never mind.) Choose your non sequitur.

And I like that.

Okay, maybe I do believe in something. For me, neurodiversity is the revelation of something I thought was just appropriate behavior. I’m baffled by the newness of that, but if respect needs heralding, what the hell.

“Bud lives in such a gray, dovetailed zone,” I wrote to Jimmy, “where the traits that earn him a diagnosis overlap so much with aspects of his personality that are just very out there, but also very deep. He actually reminds me of you.”

Ever reliable to lighten the mood, Jimmy responded, “The righteous rule the day!”

And when I tell my husband about Bud spending a solid hour in the corner of his room with his hundred plastic bugs laying out and reenacting, complete with English accent, a ten-minute BBC film narrated by Sir David Attenborough on the life cycle of the cicada, over and over, Bruce smirks, apologizes, and smirks again, because he gets it, maybe more than I ever will. Bruce spends his days mercifully alone behind a galactic digital editing console, tweaking minutia and organizing visual information within a lexicon so erudite that he literally can’t talk about it to me because I don’t speak ‘Edit.’ His work as a video editor and animator is an Aspie dream come true.

For Jimmy, it was dealing with customers in the copy shop where he worked; it’s client meetings for Bruce; and it’s lots of situations for Bud; eye contact gives them headaches and makes them depressed; it’s hard for them to filter noise, and listen. The ‘people problem,’ the ‘noise problem,’ the ‘always a beat behind’ dilemma, are experiences Jimmy, Bud, and Bruce have often; fortunately for Bud, a 21st century child, all the problems taken together have a name, and a very special school, with a teeny tiny classroom in it for just a few lucky ducks.

Bud, Bruce, and Jimmy are not fluid or pliant. They are also not selfish, or unloving, nor cruel. They relish information. They love a few people, passionately. They don’t like interference. They never bully. They stand out, and aside, and that stance says, I want you to be in my world, my way, or, no hard feelings, later for you.

These are their traits. There’s no reason to change them.

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.

My son has some quirks, difficulties that show up, several at a time, in other sons, and daughters; it’s good to name this collection of descriptives for the sake of making the sons and daughters known to the world. To be known is to see yourself reflected back in the eyes of others, to be sure that you exist, and that is what a child with Autism needs more than anything else. That is what every person needs more than anything else.

My son has Autism. He is a force. He is a person. My son is Bud.

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.


Five Trains To A Puppet Show
My mother once told me she took five trains to get my sister to a puppet show. How was that even possible? Apparently they got lost at one point and had to double back, and that’s the part I understand, even more than the interboro destination; the getting lost. But I only understand it now that I, too, like my mother, have an Autistic child.

“When you have a kid like her, you’ll do anything to get them stimulated, to put them in front of something they recognize, and give a shit about. You would do anything to be somewhere that they aren’t clawing you to escape their heads.”

My mother said that.

I do anything, well, not anything, but a lot, to give my son stimulation and to protect him from stimulation. And I do a lot myself, of therapy, a lot of going into this lady’s office to bang my psychic head against the wall trying to make a lasting dent of truth in my brain; my son is not like my sister; he is not my sis-ter. This technique of remembering my own life as I’m in it is time consuming, laborious, and painful, but it’s working.

How about that head banging. Autistics are known for it; a childhood specialty of my sister’s, my son has never, ever done it. Works for me, though.

I can’t talk in a straight line. I say one thing and it’s an octopus. My son compartmentalizes and I’m trying to learn from that. We figured this out with the bus. We didn’t think he would take the bus to the school, which is 29 miles away. I drove him the first few days, which put me in the car, given New York outer-boro traffic, for over 4 hours a day, and I was losing my mind.

I finally said to him, “Bud, if I have to drive you every day, we might break the car, and we’ll use up all our gas money and we won’t be able to go to Cape Cod.”

At that threat, the notion of losing his visit to his most ideal place in the whole world, he blinked in horror, and said, “Okay, I’ll do my part and ride the bus.”

And the next day he got on the bus and went to school as if he had been doing it all his life. A week later, for a variety of un-related reasons that only made sense in my own head, I thought for a ‘treat’ I would pick him up at school, which meant bringing my daughter along. At pick-up time, he came walking down the hall, peacefully holding his teacher’s hand and chatting with her, wearing his backpack as if he had been doing that, too, for years and years, and even though he knew we were coming, on sight of us, became furious, shouting, “You’re not supposed to be at school!”

I got it. OCD. Obsessive Compulsive Disorder, yet another of the many possible diagnoses that had been bandied around and which I had rejected because my kid absolutely does not wash his hands or flip light switches repetitively, nor is he afraid of germs or certain colors of food nor does he line up all his socks or any such bullshit; he’s got at least that going for him, for Christ’s sake. But that’s not what OCD looks like on him. On him, it is that everything has a place and never should these assignments collide. Mommy is home, a world of all the good and weird places we enter and depart together; and school is school, and I, and his sister, have no business on his turf, in the world of Velcro icon schedules and tiny Miss Sharon and kindly Miss Louise and the safety of his classroom, for he shuttles independently between worlds on the meteoric, metaphoric bus and can we not fuck with it, please. God bless the bus.

So I’m trying to borrow that. Each thing must have a box. My sister has a box to live in and must stay there. She actually lives in a large house made up of stuck on boxes, rooms that were added to this old Long Island colonial as each new resident arrived, a house bought from a family with several children, one of whom, the indomitable Cortlandt, would become the director of the place as it evolved into a ‘group home,’ (what was it when a family with many children lived in it? But never mind.) My sister has lived there for 25 years, which confounds me, because I’m 19, aren’t I? With time to get traction and complete a degree, launch a life, and take responsibility?

I am not. I am 41 and time has become the most relative thing in the world. Knowing is like that, too.

When my mother told me about the puppet show, I was horrified, but it was much too late for horror. She was talking to me about something that had happened 30-some-odd years before. My sister is 12 years older than I am, so by the time I was old enough to hear about my mother’s life with her, it was all long in the past, and I was still barely able to comprehend what my mother told me, and not too mature to judge her.

Why?” I whined, in response to the story about the five trains. And that was when she said the thing about stimulation and clawing; which, clawing, my son also does not do. But I may have responded to my mother’s story with something very compassionate like, You spoiled her. You killed yourself for nothing.

I now know that nobody kills themselves for nothing, and I found that out before I even had a kid, let alone an Autistic one; it’s not a phrase to toss around. As far as ‘my Autistic kid’, that’s not a phrase to toss around, either, and my kid is not really that, in my driving mind; it’s not a thing I know. It’s a thing on paper that gets him into a school with just four other kids in the class, not the mainstream 20. It gets him Occupational Therapy in sensory gym where twice a week he can turn off the blast of Sensory Processing Disorder noise in his face by swinging on that fucking goddamn Temple Grandin swing thing. It gets him play therapy with a shrink, and Speech and Language for pragmatics, which is the learning of how to talk like other kids instead of giving multisyllabic-laden treatises on prehistoric life forms both real and manufactured. ‘Autistic’ is a word on paper that doesn’t cost us $50,000 a year for the school because it’s proof, medical proof. It’s a way in, and a way out. It’s how he gets liberated from a world for other children that’s too much and too loud and too loose, where everyone knows what to do but him, where nobody is different, but him. I don’t really know that he has Autism, but I know that saying it makes him free.

My mother said, when I told her she’d spoiled my sister (which Bruno Bettleheim also told her, in about 1965), “Maybe you’re right. I don’t know.”

My mother was a person of fierce conviction, but what is knowing? Who cares? Knowing and time, this is what I mean. That many years later, after the puppet show when my sister was maybe four or five or six, and at the time of the telling was in her late 30’s, safely ensconced, spoiling a forgone issue, how could it matter? I could have been right, why not? Busses explode. Dogs get electrocuted on the sidewalk. People get cancer or pardoned or fall in love. Autistics talk and make a million dollars. Parents wake up every morning and go to work after three hours of sleep and don’t crash the car and die on the way home. Children love them though they yell and punish all the time. The Middle East is on fire. Japan is under water. Why couldn’t it be so that my mother spoiled my sister? Why would I not still be mad about that?

Or is that just the Sensory Processing Disorder talking, to me? Is that my noise?

I can know that my son has Autism, or not know it. I can say it and secret away in a box for myself the conviction that he does not; that’s fine. And my mother, for her part, probably forgave herself for a lot of my sister’s life, and critiques like mine were old news; still plausible but not compelling any more. She could entertain it or not -- better not. Because if I was right, then the puppet show and the five trains fall away like autumn leaves, which need no one to help them or tell them how to fall. Better if I’m wrong and she was just too tired to bicker with me, who didn’t deserve it and also did, because I live five trains to a puppet show now, and the irony is almost more than I can bear.

Good-bye, Good Dog - January 10, 2009

Nothing jump–starts introspection like death. And because a blog is really exo-spection, I have missed all of you as much as the comforting swamp inside my own skull. So it’s good to be back, waders on and lamp aloft, the gurgle and crackle of life’s guts and debris underfoot, slogging forth.

My dog, Eena, is gone. I can’t believe it.

B had seen it coming for months but I dismissed his cautious warnings. In the last year she’d gone from lazy to listless. Her muzzle lengthened through a spreading mask of gray, and her once electric, black coffee eyes became rheumy. She seemed to experience sudden shots of pain through her hips and legs that she expressed in yelps and mortified winces. I saw all that as B did but attributed it to arthritis. What I ultimately could not deny were the accidents; this supremely housebroken animal had one, and then another, and so on, with increasing frequency and urgency. Afterward she would cower in the corner shaking, doubtless now, from pain. By the time blood became evident, her cancer was in full-throttle aggression. A sonogram at the animal hospital on York Avenue revealed that she was, according to the doctor, “in danger of sudden failure, because of the rampant tumors.”

I dragged my 57 pound Pit Bull off the examining table and onto my lap and she lay across me sweet as a baby. I thought I would choke from guilt. I would not say that the guilt gnaws at me like its own tiny cancer, because I don’t have that kind of gall, but it’s pretty bad in moments, and then I stab myself in the brain with a psychic hat pin because it’s just NOT about me. I treated Eena like a princess. But she suffered, bravely, quietly, without complaint, and I am sorry about that.

For myself, I just miss her. She was such a beauty. She had a great dog-smell; warm and musty and toasty, like pretzels. Silken ears. A pink chin. She had good breath, until the end. She was powerful and discerning and loyal as all hell. She saved me from a car-jacking once, and from loneliness often. We were really together, partners, best friends. It was a good love, fully returned, and worth everything.
Eena happened to also be a very fine ambassador for her breed, and she touched, and changed, hearts and minds. Many hands reached out and changed her, as well. So I want to thank everyone I can think of who was part of her life. Here we go:

My mother, who named her. “How about ‘Eena’? She looks tough, like a Russian.”

My father, who welcomed her, and me, into his home, and ultimately gave it to us. “The thing I liked about Eena,” he said, “is she showed that all that crap about breeds is bullshit.”

My sister, Lori, who always asked, “How’s Eeeeeena the dog?” and who spent a lot of that Christmas patting her.

My husband, who gave up his bitchy cat (although the cat managed to wind up living down the hall from us anyway) to make room in his life for a Pit Bull he frankly feared, then fell in love with. Eena often made overtures of marriage to B, which he gracefully declined without ever embarrassing her. B took all those beautiful pictures. He made the videos for me.

Aunty Judy and Uncle Neil, and Aunty Betty and Uncle Sol, and Cousin Flora and Cousin Harold, who never said ‘no’ to a visit from Eena in their lovely homes. And Aunt Miriam and Uncle Eli and all our other family and friends who let Eena into their hearts.

Grandma from California, a true Horsewoman who walked a New York City Pit Bull like she owned the place! And Grandpa who expected nothing less.

My x-husband, Killer, and Uncle Vic, who were delighted to receive Eena as a guest more than a few times, fed her liverwurst straight out of the open fridge and gave her full run of the yard with its near-gettable squirrels, squeaky clothesline, and cool garden dirt. She slept on their couch. Uncle Vic fed Eena the Pit Bull extra-large biscuits from between his teeth.

Killer’s sister Lisa who let her kids chase Eena around the house in circles, and around and around and around….laughing…

Carolyn and Jeff Ingledue, who get it about dogs and who brought the kids over to play on the last day, and who cried the night before.

Kelly Kay Griffith, who is afraid of dogs and never admitted it until well after she fell for Eena. Kelly treated Eena like a lady, as only a lady from the South would do.

Megan O’Connor, who also kept a secret, that she thought I was crazy to bring this dog home, and said graciously, “You both proved me wrong.”

Patrick Dillon, who believes that animals hold their own funerals, and who could not keep his hands off her, and who played “Bite-cha!” with Eena; Eena won. Patrick, I believe that the dogs sang for your cat. I never forgot it.

Kevin Fitzgerald, to whom it never occurred to be afraid of Eena, and who threw a tennis ball at McCarren Park higher and farther than Eena and I would ever have dreamed.

Cindy Intile and Emmalie and Peter, and Allison Searson and Abby and Olivia, who never blanched at a house full of dog hair.

Chris Ryan, who was always delighted to see Eena and didn’t make a big deal about it.

The entire neighborhood of Bedford-Stuyvesant circa 2001, when I was the white girl, and Eena was that white girl’s dog, and no matter what they really thought, everybody was very, very nice. Hispanic old man who lived across the street from the basketball court, and who came out and joined us for coffee and fetch almost every morning and brought Eena rawhides, I’m sorry that we didn’t say goodbye.

Jessie O’Connor, who walked Eena all those nights I was coercing B into marrying me, and who had Eena off the leash in Travers Park, god help us, and fed her ice cream cones.

Ashleigh Hurwitz, who said, “I think a Pit Bull is a good dog for you… I mean, obviously.”

Joan Margiotta, who took allergy pills so she could visit and dragged her kids over, too. I still think Kate had a summer friendship with a Rotty when she was 1 year old, I did not dream this.

Nancy Caronia, who always shared the futon with Eena.

Candice and Rich and Max Polner, who not only took Eena for a long weekend but also chauffeured her home. Poor Rich believed Eena’s insinuations that she needed 6 walks a day, only to find out that the Pit he thought would look so cool with him was afraid of wind, rain, and garbage cans.

Everybody on Youtube with Pit tributes, who gets it. And all the single girls with Pits, who will never put a guy before their dogs. And everyone we ever met on the street, who testified about the goodness and nobility of the Pit Bulls they have known, and who stroked Eena and pet her and scratched her and saw her as she was and adored her on the spot.

And Dr. Cesar Tello, the veterinarian who told me the brutal truth about Eena, who believes in mercy and relief, and who crossed himself and wept with me at the very end.