Scared Shoeless

The very long list of rules for being an autism parent grows by the second, but a few specific ones have smashed me over the head real hard lately. Rules like:

 - Don’t bother sitting down ever. Not worth it. It takes more energy to get up over and over and over again to save your child from the dangers of the household (or vice versa) than you can conserve by sitting at all.

 - Don’t close the bathroom door if you’re the only guardian in the house, and even with the door open, take heed of any appliances running that may interfere with hearing what’s going on in the home during the time you’re spending lounged out on the toilet (you self-centered bitch, you).

 - Don’t ever take off your shoes. And I mean not EVER.

 I’m beating around the bush a little here, I know. Because what I’m trying to tell you, well, I had to live through it, and revisiting it in my mind is a little uncomfortable. Uncomfortable as in it makes my heart thunder in my chest till you can see it jumping around in there and causes unpleasant fluids to rise up in the back of my throat. But we’ve been through so much together, and maybe it’ll be cathartic. Not funny, sorry to say. But worth going over if I can do it without hyperventilating.

 It was a beautiful summer afternoon, a few days ago, a Wednesday. Eight-year-old Grace had just left with her BFF and BFF’s mom to bowl a few frames at the local lanes. Six-year-old Calvin was tired and cranky from a long hot day at summer school and wanted nothing more than to chillax on the couch with his sippy cup. His eyes were heavy and I was hoping he wasn’t going to fall asleep there…so late in the afternoon for a nap, he’ll be up all night. But at least he was calm and quiet and settled. I was especially glad of this because I had to go to the bathroom…I mean really, really go...and when you’re alone in the house with your autistic child, lots of stars have to be in alignment for you to actually do whatcha gotta do. Checked and double-checked that the boy was dozy and drowsy and spacing out in front of the TV to the sights and sounds of Thomas the Tank Engine, then went to the loo to do my business.

 Now like I said, I know the rules. Don’t shut the door. And of course, I did not. Because if I lean way forward while I’m, um, you know, I can see and hear into the living room area and make sure no one’s acting up, breaking up housekeeping, building scaffolding to climb as high as possible, what have you. Yes, the dryer was running with its hypnotizing chuggagung chuggagung chuggagung. And yes, the article I was reading was interesting enough (although I could not tell you now what it was about). But even so, I would lean forward every minute or thereabouts, yep, everything’s ok. And probably after something like 6 to 10 minutes, all told, I came out of the bathroom.

 The first and only thing I saw was the wide-open front door.

 Which I had locked, and bolted when I sent Grace off to bowling. Hadn’t I?

 Next scene is a complete blur. Nothing but silence outside, silence except for my screaming. Head snapping back and forth to look up and down the ghost-town-empty street while I scream his name at the top of my lungs. Screaming his name, uselessly, because I know full well, despairing and desperate, that I can scream until my vocal chords are frayed and bloody. He does not come when he’s called, not if he’s off on a self-directed mission. He’s not going to come trotting over to me with a hangdog expression hoping not to be punished. No. Calvin doesn’t roll like that. Lots of autistic kids don’t roll like that. I might as well be in one of those dreams where you scream and no sound comes out. But there are times when you know it’s not a dream.

 My next-door neighbor, Maria, mother of two boys now grown young men, hears me and figures out immediately what’s wrong. I hear her yell that she’s grabbing her shoes so she can get into her car and start driving around.

Shoes on. Shoes. Why the hell do I not have shoes on. Where are my shoes, what are shoes. Archangel Michael, Jesus, Mary, get on this NOW, I’m not fucking around. Trace, get the phone before anymore thoughts or prayers, before anymore seconds, before shoes.

I call 911, from the land line so they’ll know where I am, still shouting his name from the front yard until the 911 answers, then telling 911 the necessary things—somehow I could still speak English and they understood me, miraculous. Still on the phone I see teenage girls pouring out of Maria’s house, friends of her sons, and I scream at them, “Help me! Find my son, he’s six, he can’t talk, he’s wearing orange shorts! Please!!!!” They start nodding, running in all directions to find the little boy in orange shorts who can’t talk. 

I’m STILL 911-ing, answering more questions, and I hear Maria yell to me, “Tracy, Stephen’s at the pool, he says he can see a little boy in the gazebo!!!”

Stephen. Stephen is her son, he works at the pool in our housing complex, he can see the gazebo in the distance, the gazebo in the playground. The playground. The swings. That has to be right. How could I not have thought of that. Because I was thinking about the cars and their moronic drivers who circle the neighborhood like it’s the Indy 500. And the stupid-ass stream down the steep bank behind the house. And last but not least, that murderous sexual predator that network television says is in all our neighborhoods.

 So this is where I apologize to 911 that my cordless home phone will be blinking out as I sprint away from the house, across and down the street, hit the open field of the playground grounds, see the gazebo coming into sight as I round the slight bend.

 Orange shorts.

 Navy shirt.

 No shoes.

 I get to him and take hold of him. He immediately starts complaining, not at all happy to be pulled away from his happy place. Can’t blame him for that, when he made that front door swing open he must have felt like he’d just won the lottery. He probably dashed across the street (the street, the goddamned fucking street with all those assholes in all those cars), hurtling himself toward that promised land of swings like his hair was on fire. I’d been a full twelve feet away the moment of his escape and none the wiser. He had to have perfectly timed it between my minute-to-minute lean-forward-and-looks. Autistic ninja child.

 He grudgingly allowed me to start walking him back home, and that’s when I noticed that I was wailing. Half bent over, holding my stomach with the hand that didn’t have Calvin, convulsing and heaving like a crazed asylum-dweller. I wondered when that had started. I think it was right after I got my first glimpse of orange.

I noticed Maria coming toward me through the playground. She wrapped her arm around me and walked us back home, spoke calming words into my ear, “He’s okay…you found him…it’s alright…Calvin, you scared Mommy!” There was a part of me standing outside myself observing this whole thing that was a little embarrassed by the melodrama. It said, great, now Maria knows you're a hysterical nutcase.

 I wish I could tell you how long this ordeal lasted. I now know exactly what it feels like to lose all sense of time.

I’ve read the articles, watched the TV coverage, you probably have too--with the desperate parents, their autistic child had wandered away, slipped the house and property somehow, the community now covering the streets, police dogs trying to pick up scents, helicopters scanning from above. I’ve gotten calls in the past from my mom after she’s heard about a missing child in my neck of the woods, a boy, autistic...she'd call me so she could hear my voice say "It's not Cal."

 My story from Wednesday won’t be on the six or eleven o’clock news. I found my boy before we needed any helicopters or bloodhounds. But for some untold number of minutes that I thought were never going to end, I didn’t know if my story was going to be the next story, if my mother was going to call and I was going to have to tell her what she'd called not to hear. For that terrifying moment I got a glimpse of what they’ve all gone through. And it’s inexplicably, horribly, unfathomably bad.

 For comfort and courage I keep in the front of my mind that the Archangel Michael and I have a deal.  (Maybe you don’t believe in angels? That they can work extra hard for you when you remember to call on them right from your guts, especially when the shit hits the fan? Trust me, I’d be toast otherwise.) Seems to me he’s holding up his end of the bargain. So all I need is the strength to hold up mine.

 Scariest job I’ve ever loved, people. Really really really.

 (P.S. Got through it without shoes, but I don’t recommend it.)

Sackload of Everloving Suck

If there's a top ten list of reasons why I write, comic relief takes the top spot, we all know that. It's my personal balm to the soul, always with the hope that it rubs off on other souls that need it as much as or more than I do.

Unfortunately, a lot of what's been going on around me in my little corner of existence is just...well it's just not frickin funny. It has its moments, don't get me wrong, and I know I'll get to those eventually, because they really do just write themselves.

But overall, it's just much too much...and not funny.

A month or so ago, I was trick-or-treating with Mike and the kids and a passel of neighborhood urchins when my cell phone rang with a call that made for the weirdest, surrealest Halloween of my life. It was my mom, and I knew I had to take the call and not smash the phone on the pavement...as if smashing the phone would mean I wouldn't get the news I knew was coming, that her brother, my Uncle Dan, had died. (This, by the way, is the kind of uncle that you would rather NOT be your uncle, so that you could grow up and marry him one day. Ask any of his other nieces and they'll back me up.)

Anyway, we'd all gotten the 24-36 hour warning from the kind hospice people, but that doesn't take the wallop out of it one little bit. And then, scarcely a week later, with no time for anyone to catch a breath or find the earth under their feet again, we lost a second one. This time it was my cousin Kevin, who'd been in the care of yet another set of kind hospice people, and so came another load of gutwrenching heartbreak, once again not unexpected, and once again a full-out punch in the gut just the same.

People who live close enough had been making the rounds of one hospice to the other...because all of us who love one of them, also love the other. Both were young and vibrant men, but then cancer came in and did its hideous thing, leaving broken hearts in pieces all around. Countless hands to hold. Tears that never stop flowing because once you've calmed down over the one for a minute or two, your mind goes to the other. This is going to be a long haul.

I want to be able to explain it, the cords of connection interweaving all the players, all the events. It would take volumes and volumes. I don't know where to start. My mother is the oldest of eight. So it was like this...beginning in their late teens, my incredibly movie-star gorgeous grandparents couldn't keep their hands off each other, plus they're from Buffalo, and it gets plenty cold in those parts and what better way to keep warm...in those parts.

Fast forward six short decades and you need a score card to keep track of us all. I do not exaggerate...ok so you all know I do, but not in this case. I think the family crest reads "Horny and Fertile" in Latin, I'll have to doublecheck. I always pity the poor inlaws (also affectionately known as nonbloods) when they join this clan...the frenzied mental gymnastics they do as they try to keep up on who's who at the barbecue, the disorientation written all over their faces, it's kind of adorable. Pretty soon they smarten up and just have another beer. There's no quiz at the end of the night. Just a bonfire, massive amounts of laughter...and more beer.

Some people don't know their uncles, aunts, cousins, etc., very well I guess. In some families they're just relations people enjoy (or not) being cordial to (or not) at weddings and funerals and family reunions. It's not that way in my clan. I grew up living for the day we'd pack up the family truckster and go to them and get swallowed up in a sea of affection that smelled like coffee and cigarettes...and maybe a highball. To this day it still happens. My heart starts to skip around and my stomach swims with butterflies when we turn at Ilio DiPaolo's Restaurant (so we'll be on the right side of the street for parking), now just mere blocks away from the house on Madison Avenue, Blasdell, NY 14219, one square mile of heaven, just like the T-shirts say.

My grandfather still lives there, a spritely 82, but don't tell him I said "spritely" because he'll only deny it. My grandmother, Rosemary, is there too, harder to see but if you pay attention you'll know she's there, and for an extra bonus you may smell good tobacco that nobody appears to be smoking, or the fluid from a Zippo lighter that nobody appears to have lit, or a rose will bloom in the yard after the first frost has set in...seriously, pay attention, I don't make this stuff up.

But getting back to Halloween, my sweet, gorgeous, hilarious, beloved Uncle Dan died that afternoon, an event I like to call part of the biggest sackload of suck to ever hit my family. So I packed my things and headed west to be with my people. While I was there, I went to the place where the kind hospice people were still taking care of Kevin. I got to hold his hand, tell him how beautiful and loved he is, and look into his eyes so bright and alive they took my breath away. That was a privilege I won't ever forget. I can still feel the life that was filling that room, and I didn't even have to close my eyes to see how quietly crowded it was in there.

We want certain kinds of miracles when people are threatening to die, specifically, we want them to NOT die. My Uncle Dan should have lived to 100 at the very least. Sixty-three measly years, we've been gypped bigtime. He was too good to be true, but he WAS true, and we don't get enough of those on this planet for my money. Therefore, we should get to keep him, end of story.

And Kevin, don't even get me started. Forty-four years old, are you kidding me? Hell-raising wise ass, lovingest father of the best and funnest family ever, six amazing kids, the youngest a little 3-year old baby. All that, and my cousin Missy had to watch him sicken, waste away, and die, just like what had already happened to her mom, my godmother, my mother's baby sister Mary...just a few short years ago when SHE was just forty-four. You want the definition of NOT FAIR, I'll just send you a picture of my cousin Missy...who, by the way, has never faltered, just puts her head down and continues on like a warrior, taking care of the business of life and of love while a shit storm of nothing less than Biblical proportions rains down around her. If I hear myself complain about anything, I just think "Missy," then I shut my big fat everloving mouth.

So we didn't get the miracles we wanted for my uncle Dan and my cousin Kevin, not by a long shot. Instead we got a one-two punch right in the face and kick in the crotch. We feel abandoned, broken, empty, cheated. And we all hate it.

But...I don't know...you tell me if this counts as a miracle, because I really just don't know anymore. As I've walked amongst my tribe through all this hell on earth, I've felt something impossible in the midst of it all....

Joy.

A joy so huge and expansive I'm almost ashamed to admit it. But if this joy had no place in the thick of our sorrow, it apparently didn't get the memo, because it was there just the same and wouldn't be shown the door. It had hundreds of faces, this thing, this joy. One of them was Ellie's, she's my newborn baby cousin I got to meet for the first time, in a funeral home of all places. And as I cradled this newest friend in my arms, and she was gurgle-smiling up at me (and beyond me, too, I'm pretty sure) something drew my attention across the room where another face caught my eye.

It was my grandfather's face. Papa. Daniel. Resident patriarch, whom I'd just watched walk up to a casket to tenderly caress the hair of his first-born son, which just about forced all the air out of my lungs I can assure you. But Papa was seated now, and while I watched from across the room, baby Ellie in my arms, I saw something happen on his face that I couldn't..I couldn't fathom. I figured the stress had gotten to me and I was starting to hallucinate, no biggie. Because what I was seeing across the room was a face all aglow with...delight. And not just any kind of delight...it was a boy's delight, I swear to God. Just a few feet from that coffin I mentioned. He was being clapped on the back by some old-timer, a stranger to me, and then they were talking and laughing, heads close together like a couple of 9-year-old boys who'd just overturned a big boulder and were feasting their eyes on the dozens of squiggling critters underneath.

Turns out his tall stranger with his shock of white hair was a friend from Papa's youth, someone he'd probably never expected to see again, maybe would never even have thought of again...and then, as I shamelessly spied on them, awestruck and mesmerized and glued to the spot, they hugged each other like long lost friends who didn't care who was looking, their billion-watt smiles never fading.

I could barely catch my breath. It was like looking at the sun.

But you can't look at the sun for too long or you're in trouble, so luckily Ellie started making some noises. Hey, what happened, did you forget about me?

I looked her in the eyes and asked her, point blank, What the hell was that, Ellie? Truth!

She burbled some, clearly amused by the big dumb WTF look on my face. Beyond that, she wasn't talking.

But I could tell she was in on it.

Love Always

To Calvin’s Angels (on the auspicious occasion of his graduation from at-home therapy this week...and kindergarten just breaths away...)

There's a word for someone who comes into your life, who comes into your home, right when your heart’s at its most broken, your mind all places at once, and nowhere.

You didn't see it coming, but you have this little guy, and at two and a half he's not speaking, and not pointing at things, and not looking most folks in the eye (except for mommy, the last one to notice, and don’t think for a second she won’t torture herself over that, time and again, for years upon end).

So this someone, she comes to the rescue (yours? his?), swoops into the house with her songs, with her puzzles, with bubbles, with toys...the awesomest, awesomest toys...

Elsewhere they say (through white coats and small minds and 15-minute appointment slots):

How discouraging, not making the progress we'd hoped. Well, I guess you could try these here drugs, or those ones, and assume it’s as good as it gets…Next…

But in my home it goes a different way, something more like:

Aha, ok, so I'll teach him like this, then like that…alright, now it’s time for this other way. (There’s always, ALWAYS another way, by the way.) We’ll all sit together, we’ll meet and brainstorm, and just see what he’ll do, where he’ll go, how he’ll learn.

So one day he spells his name (and your jaw hits the floor), and another day he knows the name of his town, and what month it is, and how old he is, and the days of the week, and he marches, and dances, and loves to play drums, and sings favorite songs.

One day he even comes right up to you, looks you straight in the eye and says, "I want waffles." (And you hold yourself back from toasting up every last waffle in the freezer for him…because somehow you have to make sure that he knows just how brilliant he is and how proud you are, unspeakably, unfathomably proud.)

Another day his big sister comes in for a hug, and instead of his usual push, he takes hold of her arms and wraps them around himself, grinning with glee. So that next she gets bolder and grabs hands for a game, and they spin and they squeal, and he’s looking right at her, and deep belly-laughing, and all you can do is sit back, watch, and breathe, eyes wet, face hurting from smiling.

So much of the world sees only the damage, and so many "friends" see only the damage. You see it there, written boldface in their eyes, so scary it is that it could have been them, so glad that it isn’t, so relieved they are that what’s happened to yours hasn’t happened to theirs.

But that's not what you read in the eyes of the one who's come into your life, who's come into your home. Her eyes hold a different story altogether, one that you recognize like some strange déjà vu, wonder why so familiar, then it hits you.

Her eyes look at him like your eyes look at him.

Melt-your-heart kind of tenderness shines out her eyes, just like you'd expect when she looks at her own, her own little love, waiting for her back home. She says with her eyes, and her smile, and her words,

What a mush, such a love, I could just eat him up! Here's my great Calvin tale of the day.

They each have their own private jokes with your boy, their own games, their own language, and you grow to love it, you love how this…this coven of enchantresses has entered your life to share this new world, to fathom its mysteries right there by your side.

It could be so lonely, scary as hell, unnavigable, chaos…but it’s not, not so much.

Not with such hands to hold on to.

Because little by little the glimmer that’s there, in and behind your little one's eyes, your little one's smile, grows brighter and brighter, and crisper, and lighter…until one day you realize, how dazzling!

Yes, there's a word for this one who comes into your life, who comes into your home, as little by little your heart begins stitching itself back together, your mind quiets down, the gifts this child brings coming sharper in focus, more known to you now.

Some call her a teacher. Of course that’s what she is. Me, I prefer angel. And family forever. And friend of my heart. The breath of fresh air that came through the front door, and the hope that blew right on through with her.

But whatever I call her, I’m grateful forever. All my love to you, ladies. Always.

Please Pass the Tylenol...

Do you know what sciatica is? I'll tell you what sciatica is. This is the official medical definition, I can assure you:

"sciatica (n): condition that causes unceasing, unrelenting, never ending (yeah, I'm being repetitive, wanna make somethin of it?) intractable pain at the top of one of your ass cheeks, pain that ricochets randomly all around all points south of your ass cheek, pain so maddening that you find yourself fantasizing about committing the most violent crimes you can think of just because you've run out of other distractions."

That, my friends, is motherf-ing sciatica.

To the ladies who've squeezed fully-formed humans out through your angry, angry lady parts, remember how you started screaming when it got to be too much even though you swore you weren't going to be like those wusses on TLC's A Baby Story because you thought yourself so much more highly evolved than those losers? Remember the moment right before you gave in and started screaming? That very moment is where I've been all week, a week that has included an 8-hour road trip across the entire breadth of our great state of New York.

I've had it, people.

How'd it happen? I don't frickin know but I have a guess. We were visiting relatives in the Buffalo area, the kids and I. Husband wasn't in town yet, still working and following a day later. I was sleeping on an air mattress per usual. No, now don't go blaming the air mattress, I love air mattresses, I love all kinds of mattresses, and couches, and chaises, and carpets with nice cushy naps...and I can sleep like a drunken homeless person on any of them in complete and utter bliss. But this particular time something unusual happened. (Yeah, get comfortable, grab your coffee...I'll wait for you.)

It was the wee small hours of the morning, and the whole wide world was fast asleep...all except my sweet boy Calvin. He was up. He'd been sleeping on the bottom bunk of a bed right next to me. I'd pulled the air mattress right up next to him just to keep him close by. We've done this tons of times. Never even think about the top bunk, never use it for anything but stacking up some clothes, wasn't even sure how you were supposed to get up there. Calvin decided to find out. I'm starting to figure out how he does it. It must be that he watches me sleep, waits for rapid eye movement so he knows I'm pretty well under, then makes his move. Carpe diem!!! And this, my dear friends, is a photo re-enactments of how I was awakened that morning:




Imagine my surprise! How many of you have been ripped out of a dead sleep quite that way? And what to my wondering eyes did appear but Calvin "Superfly Snuka" Stroh-Simon, belly flopped on top of me, giggling ecstatically, smiling his glorious billion watt smile into my face, my groggy shocked face, as if to say, "Was that not AWESOME, Momma? Shall we do it again?"

The good news is that there's been no evidence of internal injuries to my person. The not-as-good news is that later that day my neck and shoulders started to feel like I'd been smartly rear-ended at a stoplight by a monster truck. And by the next morning, the ass pain commenced, that condition whose official fancy pants name I defined for you above.

It's not all bad, really. If I'm standing up perfectly straight or lying down perfectly flat, it doesn't bother me much. But I had a little setback yesterday because, well, I've done horrible things in this or some other lifetime and karma is karma. I was taking Grace to her first day of summer rec camp, pulled up to the curb in front of the school, no hurries no worries, summertime and the living is easy...but as I'm a little compromised with the ass pain thing, I must not be lifting my feet up high enough when I do things like step up onto a curb.

And so, I face-planted.

It felt very slow motion, like I could feel as each part of me hit the pavement within the split second it took for me to bite the dust. So weird. And the inner dialog went, "left hand, palm down...smarts but probably not broken...right knee...hmmmm that's going to leave a mark...right shoulder...owie, even bigger mark...NOT THE FACE NOT THE FACE!!!!!"

Know what the hardest thing about the fall was? THE CONCRETE! Hahahahahaha!!!!! No, I jest, the hardest thing was having to limp into the elementary school with my child, me looking like I'd come from the wrong end of a street rumble or maybe caught some shrapnel on my way in from the parking lot. Teenager counselors looking at me like I must be the mother who eats vodka jello shots and OxyContin for breakfast. "We have a first-aid kit, ma'am" says one of the vibrant, fresh-faced, excrutiatingly young and beautiful staff members. She was only trying to help. So I refrained from beating on her even the littlest bit. I know, my self control is awe-inspiring.

That little incident was yesterday, and I'm much better now. I hurt all over and I have the oozing scabbed face of a meth addict...but I've been able to sit here long enough to write you this post without having to throw a lamp across the room.

But I'm going to stand up now, we're running low on lamps.

And I could use a snack...there's always room for Jello.