Carly Simon Means: RUN!

3

There are times, like today when a dust settles around my spirit and I feel, for lack of any better word, melancholy. My superwoman cape is drab and dull and frankly, I am not feeling worth my weight in dust bunnies.

It’s a malaise inside that I have to move through and it resists me. The harder I kick, the more of my movement is swallowed up. It’s as if I am against an invisible, tugging current. All parts of me come off slower then. It’s like resistance and ripples creeping across the water. I am moving, sometimes as hard as I can, and it is just that–hard.

ocd-chefI am on the floor on my hands and knees cleaning up urine from around the toilet base, walls, and cabinets again after having just shored up an Apraxic meltdown of Richter Scale proportions—a tirade of hot words that are not words, but are still my job to understand if I hope to ward off seismic activity.

I’ve already decoded a thousand and one wants and needs. I’ve been interrupted in my incredibly important task of cleaning the vertical blinds over the sink that had at least six months of glopped on goo accumulated, five times to figure out which of the nine hundred and one Word Wise videos he needed me to start, only to have him decide that it was the wrong one, after all, two minutes later. If he asks for one more snack or cup of juice, run boys–cuz !!POP!! will go my head.

Patiently and painstakingly I’ve picked my way through landmines of OCD bored eating behaviors and interrupted and redirected more repetitive friendly old standby stims of spinning and chewing in addition to the new crop of behaviors that seem to appear overnight. I’ve dug deep to find a substitute less harmful FERB’s than I can count. I’ve remembered what a FERB is!

I’ve patiently, not raised my voice by more than an ear-splitting decibel or two, to ask him to pick up the mess that falls behind him like a flurry of constant snow. I’ve begged time and time again on the carpet of my newly cleaned living room, only to turn and find more. That very same carpet that took me an hour to vacuum as I struggled, again and again, to find the clog in the hose, all of my brain power consumed right there, suddenly reduced to the eyeball licking lizard parts in a  death roll with a f****ing vacuum cleaner!

I’ve looked up, having succeeded at that, feeling ridiculously victorious and powerful, like I’d invented a prettier wheel or started a fire with nothing but a stick of gum and a toothpick– only to see his toys and the odd papery bits that he tears up and throws like confetti have piled up again. I’ve put in earbuds and drowned myself out with hair bands of the 80’s and concentrated on methodically folding towels. I’ve really tried to tackle this house.

Why? Well, aside from the imminent arrival of yet another adorable bright-eyed and sincere well-meaning 20 something-year-old therapist, who all snark aside, I’ve been grateful to have all of these last three years, there’s also my core belief system to consider. I’ve always believed that the outside environment closely matches whatever is going on between my ears. The house was reflecting a bit of a backlog and distraction, and since we’ve got therapy today, I thought I’d clean it up. With Swiffer at hand and the best of intentions all fueled tip-top up with coffee, that’s what I’ve tried to do.

I’ve done my best only to have found myself there again, I’ve never found myself anywhere glamorous when the other camel finally drops and breaks the straw’s back. I found myself on the floor at the base of the toilet, earnestly and sincerely using every part of my good intentions to clean up pee. Pee– I said. Pee that is everywhere. I am up to my eyeballs in crazily catastrophically monumentally badly aimed pee! A shadow fell across me and he was standing there again. Needing me. Speaking in Russian. Hands jerking and mouth twisting, he was there speaking to me. He must have known I really liked the song that I was listening to. Ratt “Way Cool Jr.”  which suddenly lost all of its nostalgic Aqua Net permed hair and raccoon-eyed boys in eyeliner, suspiciously androgynous, cool. My youth stretches out of my grasp and grows even fuzzier as it streams away, shoot, maybe I am nearsighted too! Now it’s crap AND pee! Damn.

That girl that I once was finds a sudden current and is taken out, leaving only ripples in the water beckoning across the distance back at me. I snap off my iPod. I’ve suddenly had it. I am torn between exploding or imploding, the indecision seems all-encompassing until I am left with my pulse skyrocketing and one eyeball twitching. I’m humming like a power line. My eyes close and my breath catches. My body tingles as I hear myself snap “What! What now?! What–Nicholas? What is that you NEED now?! Can’t you go and give me a minute?! Go. Please!!!” the words are gone and bouncing hard off of the sunny yellow bathroom walls. How appropriate my wall color seems now. Pee, colors everything.

In their wake I feel both a pressure prick of festering bubbling ooze release, followed immediately by visceral hard gut aching regret. Then, though my music is off, something whirs like a needle to a record finding an old popping and crackling familiar groove in my head. Completely unbidden Carly Simon begins to croon internally. I am quite sure I hear her mellow low whiskey tones filling my head with “Coming Around Again” and not just the song, but the full Heartburn version with “Itsy Bitsy Spider”—in a children’s choir. The choir are all lined up in their robes with cherub cheeks and rosebud lips, they are waiting to tell me in angelic strains how bad a mother I’ve become, and how I am not at all like that dedicated fabled spider. Carly Simon means RUN! Too late, I sag, I’m a goner.

I am suddenly quite simply, bawling. I am on the bathroom floor looking at his needful face and my back slides down the wall and I am crying. It licks through my soul like a prairie fire that has caught a sudden hot breeze and is rolling through me. It’s a bottomless and vast feeling and it is beyond my control. Nicholas starts peppering out “Nokayyyy! Nokayyyy! Uh oh, uh oh! Oh No! Nokayyyyy!” and puts his hands over his ears and rocks back and forth and flaps his hands against his head like he does whenever anybody feels heightened emotion before he moves away.

I hear something thud ominous and dark as an object is sent bouncing off the walls in his bedroom. The landslide that is always waiting inside of him begins to roll. I have the choice of getting up and moving through it, or letting him spiral into a full out roar. But, I couldn’t so I just had myself a good ugly splotchy cheeked snot running cry. Sometimes mommy’s have landslides too. I was stuck for a few minutes just like that. Slowly I began to come back around from under Carly and back to myself–

Here’s the thing. I like my job! I love my kids. Though, I’m the most reluctant face of a housewife you’ve ever met! I squelch blue streaks regularly–and I’ve a devious childish tongue sticking out peeking out from behind my eyes. I think of the absurd regularly, I revel in it. I find that kids with the right soundtrack can be a little creepy. Oh, yes Hector Berlioz and his version of ‘Dies Irae’ upon sudden waking to find a child standing at the foot of your bed at 2:00 a.m., will do it, won’t it?  Have I mentioned that there is always a song in my head? I’m working around a lot of chatter and noise, but I do try.

I high five myself every night when everyone hits the bed with all their fingers and toes intact. It’s not the easiest gig to take on for me but—-I try! When Nicholas was first diagnosed my dreams of launching again on phase two of my life for some sort of professional goal withered before it ever even got fully formed.

Autism. Locked in self. Stunted social connections. Behavioral issues. Marked difficulty in forming bonds and expressing empathy. A severe lifelong impairment in social and communication abilities. Rigid stereotypes and strict sets of patterned solitary behaviors. The choice wasn’t even a choice—I never had a moment to ask myself what I wanted to do. Of course I knew I’d stay right by his side. I’d throw my shoulder against whatever cracks I could find. I’d love him with all that I had and I’d hope that what I could find in myself to give would be enough to see him grow into his best version of self. I’d be here and try my best to teach him empathy by showing it, I’d connect with him—even if he didn’t connect with me. I’d get down on my knees and connect with him whatever it took, I’d do whatever I had to do for a chance to unlock him—so that in 20 years I’d never doubt that I tried. That’s not a request for sympathy, that is a simple statement of fact, and I have absolutely no regrets for that decision.

It is also true that sometimes I drift out on some kind of tide. I wonder what part of this is of my own personal destiny. Did God know this thing with the toilet and pee was what I’d be doing? Did He know I’d wonder if I had enough to give? Did He know I’d circle time and time again dangerously close to sinking into self-pity? Does He know how it all turns out?

What would it have meant if I had known? One thing’s sure, if I had known for myself I might have rocked that mini skirt and careless youth harder! I would have enjoyed with a softer heart more of the things I was then so rebellious about. I’d have walked softer and saved up my fight and tears a little bit.

Yet, nothing would change about my choices of today, of that I am sure. Nicholas and I we were meant to be–absolutely. But sometimes I watch my husband doing so well in his professional life. He’s climbed up from being an accidental mechanic–landing that job at sixteen without much planning in that lazy teenaged way that so attracted me. I can still smell the scent of grease on his hands and clothes, if I close my eyes and try. It’s how I still identify him in dreams and in my memory, by that nearly tangible scent of grease that I loved. Somewhere along the way he changed and slowly made his way up to management and has since become an engineer. I’m so proud of him—and that mini skirted Van Halen loving girl never saw him developing the way he has either. The best part is that after 22 years together, I do know that my supporting presence is no small part of that. I do not begrudge him his professional growth. That’s another thing that comes with time together. His accomplishments are somehow entirely his own and yet also– a little bit of mine.

I make up a part of that in doing the best I can with as giving a heart as I can find. I keep a welcoming home. The pride I take in baking bread and doing the best I can, is a touchstone of who I am. My intentions glowing behind my childishness are perhaps my best quality. I mean to do my best, even if I am cracked a little bit. I am also comfortable in my skin as an intelligent being who has a quick wit that zips in and out of life like a humming bird flitting through razor wire. There is strength in willingness to serve, people who miss this about women like me– are fools. My husband isn’t, he knows.

Carly Simon isn’t singing about him—she’s singing about something wistful and perhaps yet unreached in me. There are days when she swings through my head echoing in the shadows and I wonder almost—almost wonder—if this was all I was meant to be? Am I really meant to be a cleaner of toilets and an unclogger of vacuum hoses? A person who holds the door open for everyone else? A finder of socks and a keeper of the memories? A person who becomes exasperated with the constant demands of special needs child, at times, and then sits on the bathroom floor and cries? A woman whose cape is droopy. A woman who hates that shitty dumb cape anyway! A woman who sometimes feels sorry for herself. Is that who I was meant to be?

The answer to that whispered across my skin today. It was annoyingly simple too! Simple makes me bug eyed! Simple shouldn’t be allowed in such heavy hearted questions. If Carly Simon is playing, it is big guns time, dammit! The answer should be a fantastically profound and neatly compiled into a six part series of leather bound ancient dusty ass volume set and be all 50 shades of complicated—Galileo and Socrates should have studied and pondered how best to explain answers to questions so deep as these, to pass down to the likes of me. It shouldn’t be as simple as a single word. Maybe. No, really! Maybe–that’s the answer.

Maybe this is exactly what I am meant to be. No bigger or more unique than anybody else, my struggles no harder—they’re just my own. Maybe I am meant to be just this. Maybe I am meant to be a person who is but one tiny light in the world, just exactly where I am.

Maybe–is also so full of possibilities, though, don’t you think?  I do–Maybe is open ended, it isn’t yet complete. Maybe is an answer pausing for breath. Maybe is a tuck and then roll, it hasn’t stopped yet–A lot can happen in that pause and roll while a life is still being written. Maybe, I am meant to open myself to the ups and downs and to all the possibilities. Maybe that’s it. Finding some sort of balance and then holding it for awhile and hopefully longer and longer out each time before I topple over again. Maybe it’s in the picking myself up after every fall. Maybe it’s about finding swagger and swerve and some great FERB’s for myself! Maybe that is all there is after all.

Up off of the floor I went. Ipod out and dubiously I looked carefully in his room. He was throwing T-Rex at his closet door. When I walked in I said “Hey bud, what do you need?” He turned and looked surprised to see me there. He smiled. He makes my poor heart stutter with his beauty, he doesn’t even know how beautiful he is. Out came a big hitching breath as he burbled off a long string of his speak. I set about to untangle it. I took a breath and shook myself.

Cleaning? It’ll have to wait. Ratt and Way Cool Jr. too. But, Carly and her ghost choir and that stupid glass half full spider had shut up. Thank God!

Me? I’m wearing my droopy cape telling you about it. We spent the rest of the morning with me letting him “help” me cook. I sang his Word Wise song and I listened hard and managed to understand his Apraxic request to go to the store and buy a Tooth Fairy treat. Then something wonderful and unexpected happened! My daughter who is normally so busy—walked in and said she’d take him to buy the treat and run errands. My shoulders sagged. I was dangerously close to bawling again. But–a simple grateful “Thank you” is what emerged.

Which leads me here–telling you. As always the clackety clack of flying fingers eases my shoulders. I’m not moving so much through water. Maybe I will have extra time to iron my cape if I want! I think that stumbling up from a heap by a toilet and rewinding and trying again, five times in one day–but starting again each time– Oh dammit! Just like that dumb spider. Dammit. Oh, just suck it Carly Simon! You just piss me off. Shhh!–

What I mean to say is that I do think that starting over again deserves some swagger. My cape is still a pretty good fit and it is a way cool Jr. move for sure!

3 Comments
  1. mccrackyn says

    This is so amazing. You have captured this moment of raw honesty and shared it with us. Thank you. I will remember this story the next time I am feeling overwhelmed and my own cape is tattered.

  2. Angie says

    Thank you, Cynthia, for sharing these emotionally charged thoughts, AND for teaching me a new word (Apraxic.)

  3. Cynthia Emily Griggs - Niswonger says

    Thank you both! I am glad to be passing on new words—Words like these are some of the most daunting parts about having a child diagnosed with disability. They come flying at you fast and hard and you are expected to learn them quick. My son has Childhood Apraxia of Speech as well as Motor Apraxia. Those are separate and distinct conditions co-morbid to his Autism. The other acronym I used here that might be unfamiliar is FERB. Functionally Equivalent Replacement Behavior. In Autism there are a lot of “strange” repetitive behaviors that an individual may display, most are harmless–flapping of hands, humming, and lining things up. But, some behaviors like spinning and chewing can be dangerous and need to be replaced with another behavior,or an acceptable equivalent, like an appropriate soft non harmful object to chew on (in our case a blanket) or a trampoline instead of spinning. Spinning can be harmful if the child loses balance and falls or runs into sharp edges on furniture etcetera. Sometimes my writing gets peppered with acronyms or phrasing like a backhanded salute to what I’ve had to learn. There are a ton of strange words and letters I’ve had to understand! IEP, ABA, Stim, CAS, APE, FAPE, PICA, LD, PDD-NOS, stereotypy, hypotonic—When you’re child is diagnosed its like you’ve been dropped somewhere foreign and are no longer even speaking the same language at all. A million new words and acronyms come flying at you! It’s a hard sharp learning curve. So there you go—but I think ANY mother in the world –working or SAHM—special needs children or not—has had Carly Simon–or whatever their personal version is, play in their heads! We aren’t always our best most glowing selves. But, most of us rise up and start again, because what are you gonna do? We love those fluffy heads. Thank you for reading xxx

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