As my favorite tv show—The Big Bang Theory—comes to an end, it wrestled recently with a surprisingly feminist sub-plot: whether or not a woman should want to have children and what it means if she doesn’t. The series frequently pokes fun at parenting including the ambivalence surrounding having kids. Perhaps I have laughed a little too hard at some of these jokes, or maybe I appreciate that someone had raised a question that bothers me in my own struggles with motherhood*.
In science fiction/fantasy stories, when the heroine has pissed off the gods or broken the ancient talisman of her people, she can go on a quest to redeem her honor. Sure, she may have to crop her hair and dress like a boy to defeat the Hun army…but in the end, it’s worth it.
She returns with the seal of the emperor and is held up as an example of once-in-a-lifetime courage and fortitude. At the very least, she is welcomed back home with cries of “Huzzah” or a marriage proposal.
At what point does our heroine realize that she is in an epic battle for her existence?* Maybe to her it just seemed like a lot of bad luck rolled up on her at once?
I ask this question, in truth, because I think I missed a giant clue along the way.
Or I’ve defiled a temple somewhere and the gods are angry.
I’m not entirely sure when it happened.
But I think it started with the toilet. Continue reading Mulan-ing It Up and Deciphering Pernicious Plumbing Portents
I’ve been keeping secrets.
Because I had to.
Because it involved a court case.
That involved my son.
I wrote an anguished post with gut-wrenching pathos at the time it happened.
And I’ve waited until the final hearing to share it.
You may question whether it is appropriate to publish such personal information.
I certainly have.
But, I have decided that if it is at all possible to help another child by sharing what we endured…
…to reach out to other autism families.
…to other police officers.
…to other neighbors.
Then, maybe next time, nothing bad will happen.
Or something better will happen.
Or nothing will happen at all.
And wouldn’t that be beautiful!
June 9, 2018
We met today under the worst circumstances. You were just doing your job; I understand that. But I feel I need to explain why I behaved the way I did and, perhaps, you can understand a little bit how the exchange seemed from my side of the handcuffs.
I came to the door, half-clothed and disoriented by lack of sleep, to learn my son had escaped. For fourteen years, I have been responsible for keeping my child safe and I have failed. Again.
But this was different from other times.
The neighbors whose home he entered were sleeping. All they heard was an intruder.
And my son no longer looks like the little boy he is.
When you first approached me, you said something about my son not responding to requests. My reply was not polite.
“Of course he can’t respond. He is a non-verbal autistic!”
You walked away as if you needed space to process that.
So, when you came back and asked me, “Do you realize what might have happened?” I answered you honestly.
“Yes. Yes, I do. It is my greatest fear.”
I was not trying to argue that the situation wasn’t serious. I was just grateful nothing worse had happened. I was focused on making my son feel better, to calm him down right now so he wouldn’t injure himself.
And you wouldn’t let me see him.
You have protocols for interactions. None of the officers would let me approach the car where my son was handcuffed. But I could hear him wailing from where I was standing in my bare feet on a damp sidewalk. You have your emergency response and I have mine.
I have a mother’s need to care for and defend her child. It doesn’t matter that my ‘child’ is five feet eight inches tall and weighs 170 pounds. He is still a child who was crying because you had his blanket, crayons, and papers. Materials now taken away in evidence.
It is probably not expected for officers to feel empathy for the wrong-doer, or his mother. To care about both sides of an equation. Perhaps you were running on adrenaline?
Did you train your firearm on my special need child? He couldn’t follow a simple command like, “Put your hands in the air and get on your knees.”
This thought haunts me.
I later learn, from the reports, that you had to tackle my child to get the cuffs on him. That he resisted and clung to a door frame as he was pulled from the house. This explained the bruises and abrasions.
Trust me, I can picture what might have happened in painful clarity.
In the past, when my son has escaped and entered homes or the nearby church, people have recognized his special needs and things have been okay. Maybe that made me blind to a growing problem.
The fact that my son was wearing a pair of Christmassy pajama bottoms and a Victory Day t-shirt from the school’s special needs programming wasn’t enough to tell you how very special he is.
The training that kicks in and locks an officer into a rigid response doesn’t allow you to recognize my shock and relief at a nightmare that wasn’t fully realized. Perhaps that looked like an insult to you? It wasn’t meant to be.
You couldn’t know that I had been sick with Salmonella. That Friday night was the first night I got any real sleep in almost a week. So, when my son woke at five a.m. Saturday, I was disoriented and put him back to bed. That when he woke me at 6:10 a.m., I was more so. That I fell back asleep is my fault. I promise you, I’m wide awake now.
I am haunted by what might have happened. I am haunted by it every time he is out of sight. I am haunted by a future I cannot see or control but can only dread. Fear never leaves me.
I am grateful that he wasn’t taken into a police station and booked. Thank you for releasing my son into my custody. Even if, like Cinderella, you sent him home with only one shoe.
I had hoped that the neighbors would drop the charges against my son for entering their home and scaring them so badly. But their fear was greater than their understanding of autism or the limits of a system that is not built for children like mine.
I do not blame them. Or I try not to. I understand how it must have looked from their side of the road; I just wish they could see the situation from mine.
Just as I hope you can understand. And that you never learn how it feels to watch your baby in handcuffs, crying and just wanting to go home.
Like many unpleasant life lessons, this has been a learning experience.
The wheels of justice move glacially slow.
We waited weeks for the notice that my son was being charge with first degree home invasion. Then we had to be assigned an attorney by the court. Then there were appearances and reports to submit. The sheer drag time of getting a competency review dulled the initial sharp stabs of terror to a steady, gnawing anxiety. I cried a lot this summer and into the fall.
During that time, Child Protective Services became involved. I was very grateful for the unexpected kindness of the Children’s Services Specialist who eventually cleared me of charges of neglect.
There were some positives.
The county health organization expedited Alexei’s process for getting ABA assistance as well as Community Living Supports. We are finally getting the help we’ve needed.
Also, I was able to take advantage of a program through Vivint Gives Back to get a reduced rate for a security system that will wake me up if any one of the doors or windows are opened.
And my son’s window now has security bars, because he can get into trouble even faster than an alarm system can wake me. (I stopped jerking awake at the slightest noise after these were installed.)
My son’s psychiatrist agreed to let my son take stronger meds to help keep him asleep.
And this week, my son was declared legally incompetent.
The case was dismissed with prejudice. Which is a good thing. It means he can’t be held responsible for his crimes and the verdict is final.
And I can only hope that the next time a family like mine is struggling, that it doesn’t take a crisis to get assistance. And that maybe the neighbors will offer to help make our lives easier instead of harder.
As for me, I spent these months channeling my fears and anxiety into my garden. Every time I had a panic attack or thought about losing my son, I planted flowers. I think I there are over five hundred bulbs and perennials out there now.
So, when spring arrives, perhaps it will bring a promise of better things.
I grew up expecting to be somebody special…someday. This is both wonderful and terrible, hopeful and sad. Mostly, it just gets in the way of being somebody now. Looking for the arrival of an idealized self, you can’t see the greatness in everyday heroics because there is no spangled outfit or magic amulet to show you how great you are. I blame my childhood.
As an overly imaginative little girl, I envisioned all sorts of futures. I was the conduit for every character I read or saw on television. I would adopt a persona and play dramatic roles for an audience of one. I was Laura Ingalls from Little House on the Prairie long before Elizabeth Gilbert stole the role I was destined to play. (I wanted the blue hair ribbons, darn it.) Life is rarely kind to such dreamers.*
I had a giant, wall-sized mirror in my childhood bedroom—it covered a massive hole in the brickwork. After dark, mice would crawl up behind the giant glass pane and scratch at the edges trying to get into my room.** I was both terrified and mesmerized by that mirror; it held all my hopes and fears.
Unlike the magic mirror in Snow White—my looking glass never made dire predictions. It was more like the Mirror of Erised from Harry Potter lore. It was a stage for my heart’s desire: a place where I could be the hero of my own epic adventures. What you don’t realize as a child? Most superheroes have a tragic back story that propels them to become super in the first place.***
I marched back and forth in front of that mirror transforming into whatever television character I was enchanted with at the time. One of my earliest superhero flashbacks is wanting to be Wonder Woman. Maybe it was because, as Diana Prince, she had dark hair and glasses, like me. I made tinfoil bracelets to ward off bullets—making “pi-too pi-too” noises as I deflected imaginary attacks. I would spin in circles until I fell over dizzy and giggling.
Linda Carter marched onto the tv screen as Wonder Woman from 1975-1979—finally representing everything the 1970’s said a woman could be. Wonder Woman was strong and sexy—a woman who had all the power and could whip men until they cowered at her shiny red boots. An excellent role model for a prepubescent girl. Um…uh…yeah. Anyway...
At the time, I didn’t question wearing a skimpy outfit and go-go boots as the appropriate wardrobe for a crime fighter. In my defense, I was eight at the time. I desperately wanted to be the heroine who saves the day. Honestly, I’ve never really outgrown those early impulses.
As television programming changed, so did the sophistication of my dreams. Since I couldn’t be reborn as an Amazon, perhaps I could become super via technology? From 1976 to 1978, Lindsey Wagner followed on the celebrity that was the Six Million Dollar Man—who, in today’s currency, would barely register as any level of super being.
The Bionic Woman was my first taste of a regular person who became super-human through the advancement of cybernetics. Looking back, the sound effects and ‘action’ sequences of speeded up film look laughable, but back then, I ran everywhere emitting “da…da…da…da…da…” for high-speed sound effects or making “SprooooooIIiiiing” noises while jumping off the couch. (My brother and I owe my mother apologies for what we did to her furniture.) My hero complex would not be complete if I did not include a certain spectacular trio who entered our homes as black silhouettes surrounded by flames.
Charlie’s Angels dominated the airwaves from 1976-1981 finally exhibiting *cough, cough* attainable qualities of superhero-dom: athleticism, skill, and wit. That they looked good in a bikini and frequently wore one to fight crime is only more impressive now when I know how hard it is to find a swimsuit you can swim in none less run and tackle bad guys wearing one! (The heroine is wearing the bikini in the preceding analogy…but now that I think of it…it would be much funnier the other way around.)
I asked the internet to find “Bad Guys in Heels” but it gave this instead:
Sorry, got distracted there for a minute. What were we talking about? Right. Becoming super.
Wonder Woman, the Bionic Woman, and Charlie’s Angels were the quintessence of female power and prominent pulchritude—women I so badly wanted to grow up to be. There is just one, tiny problem with this, as it turns out.
Being a superhero in the 70’s required that a woman be multi-talented, super intelligent or powerful, and it helped that you were *ahem* well-endowed with superspeed, a lasso of truth, surgical enhancements or have an invisible billionaire backer with a voice to melt butter. No biggie. One thing all of these super women have in common though is only obvious by its absence. None of them are mothers.
Apparently, one can either be a superhero—strong, confident, and kicking ass in man-devouring footwear—or you can be a mom. I tried, but I couldn’t think of a single superhero of my generation where that was possible. This is a big problem when it comes to finding your inner super qualities.
Being any kind of mother is incredibly hard work. It is mostly filled with endless, thankless, and unrewarding tasks and—unless you are some kind of Stepford Saint-of-the-Year with built-in lack of aspirations—parenting kind of sucks. Anyone who has ever changed a diarrhea diaper will tell you how un-fun it can be! But, it is particularly hard to feel that you are living up your super-mom potential when the son or daughter you are raising has autism. Don’t get me wrong, autism is not the bad guy here. It’s the character-building plot twist that makes you want to be a super mom in the first place!
No, the evil villain in this story is the irrational effing voice in your head telling you that every action or inaction has the power to make the difference for your changeling child. I call my villain ‘The Heckler’ and its voice is particularly shrill and nasal. (Think Fran Drescher on helium wielding a chain saw.) You search for therapies, solutions, answers to meet your child in a maelstrom of unknown and unseen terrors. No matter how far you come, you can only see how far you have yet to go, or worse, how far you’ve fallen short of your ideal. It’s Sisyphean motherhood at best.
I don’t want to whine about the challenges of parenting on the spectrum. What I am talking about is being able to look at my actions through a kinder mirror. One where I see that, though my accomplishments may not be as death-defying as stopping bullets with a bracelet, they are equally amazing and wonder-worthy. But how?
One of my favorite Curly Girl designs by the artist Leigh Standley, says this so much better than I can:
Seriously, Autism parenting would be so much easier if I had super powers!
This got me to thinking.
What if…I drew my character on paper? Give her magical gadgets and abilities…and a cool catch phrase? That’s it! What I need to do is…become super! But what super powers would I give her to make me believe in her heroism? What would make the perfect Autism Mom?
Super Autism Mom Checklist
Autism Mom needs…
Emo Vaulting—the ability to leap toward compassion in a single bound. (Or maybe a lasso of empathy to throttle idiots who lack any?)
Psychic Powers to know why in the world her kid is doing ‘X’ repeatedly so she can stop going crazy and let him be. (I’m looking at you Exit 59.)
HyperSonicSensitive Precognition—the ability to detect and avoid sensory overload meltdowns!
Rx Defensive Measures—an emergency bandolier of psychiatric medication on hand at all times—for herself or her kid, as needed. These prescriptions would magically fill themselves before running out and would be totally covered by insurance.
Supercomputer Implants that would remember all the I.E.P. goals, meetings, and doctors’ appointments. Now before you can say ‘iPhone’…it is also a time machine to be able to go back and attend anything accidentally scheduled for the same day. Plus it survives a bath in the toilet and a trip down the laundry chute!
Guards Against Humanity Cloaking Device—an invisible shield of imperviousness so narrowed-eyed onlookers and snide remarks would slip right past her when she takes her child out in public.
A Cone of Silence would descend so that screaming fits would calm to a dull roar and wrap the sufferer in a soothing cocoon of sensory deprivation so outbursts would subside in half the time. This will work for the child too.
What else? Oh, I know, let’s add:
Telekinetic Magic Belt that would dispense a flare gun, a fire extinguisher, a tourniquet, you know—the usual ‘whatever’—needed on a given day in Autism Parenting. It would miraculously produce whatever special item your autism adventure demands—like Dora’s backpack, but less creepy.
Our super heroine is almost complete. Almost fully armed for the battle of her life. All she needs is one…more…thing…
The Unbreakable Mirror of Truth.
Autism Mom would carry a magic mirror so that, whenever the evil inner demons start chanting her failures, she can hold it up and it will reveal the super mom she truly is. Instead of unwashed hair and sweatpants camouflage, she will shine for all the world to see.
[Note: The Mirror of Truth will also show her as several pounds lighter because, come on, don’t we all really want that super power!?]
Anyway, she is the me I want to see when I look in the mirror.
Oh, yeah. I almost forgot.
Every Autism Mom deserves a nice tiara.
I recently re-watched the pilot episode of Wonder Woman and was struck by the advice Queen Hippolyta gives Diana before sending her out into the world. Words we autism moms should all live by:
“Go in peace, my daughter. And remember, that, in the world of ordinary mortals, you are a wonder woman!”
We truly are.
Asterisk Bedazzled Footnotes:
*Dreams, by their nature, only exist if one suspends all disbelief and evidence to the contrary. This is why they rarely survive waking.
**Mirror, Mirror, on the wall. What the [bleep] doth creep and crawl?
***Again with the blessing and the curse analogies. Man, am I heavy-handed today. My bucket of overwrought symbolism overfloweth.
I was reminded today that being human takes practice and it is, thankfully, not as hard as propagating orchids. I did not know, when I headed to the Meijer Gardens Orchid Show, that I would learn that flowers grow in forms of glass, peat moss dreams, and human bonding–both casual and eternal.
Sleepless after ill-conceived, late-night revels with the Princess Bride and Futurama, I staggered to Meijer Gardens Saturday towing a camera with a mostly-dead battery.*
Thank goodness for iPhones.**
My son dragged me to a corner and refused to budge while we both waited for salvation in the form of a fearless babysitter incentivized by college debt and the promise of at least a Benjamin to keep the orchid’s safe from harm.
The minute my child disappeared with his sitter, I was off. My goal—to photograph as many blooms as possible before my teenager got bored and came back. So, basically, like the count down timer on a nuclear device–I was set to go!
iPhone camera in hand, I stalked exotically named flora.
I hadn’t hit my stride when I ran into a mother and her 26-year-old son. We were fighting to capture the same bloom without flashing each other to blindness.
The mom struck up a conversation as I waited my turn at the luscious fuchsia petals that somehow managed to be the stealth bomber of the orchid enclave.
I was too focused on the flowers. I almost missed hearing that this well-spoken young man has Asperger’s. And like a flower turned to the sun, I lit up meeting him.
To his mom, I said, “My son has ‘classic autism’, he’s non-verbal.”
“I know. I saw you earlier with him.” She confided, nodding toward her son, “We reached him through his love of photography.”
Her son took a break from photographing the coveted blossom. We shook hands. He told me his name and then asked me for mine. I spelled my name out for the young man. He dutifully entered it into his phone—taking delight when I asked if he knew how to spell my last name—citing the Harry Potter – Salazar Slytherin reference. He showed me his phone and he had it letter perfect.
Unfortunately, in the hustle, I totally missed taking his name down. (The day was about photography not blogging, so my notes were whatever I could slap into my phone between pictures.) Looking later, high and low, I couldn’t find his name. If you know this young man, tell him I said ‘Hi’ and ask him to find me.
But, because I met him, my whole day changed. I wasn’t there just for the flowers, but to flower in the company of human experience.
And in writing about each person I met, I decided, I needed to invent an appropriate orchid name.
First, I met…
The Freckle-Dusted, Curly Charmer – a/k/a Rachel
In such a small space, it is not hard to run into people—several times even—at various stations.
I inadvertently stalked this couple throughout the gardens: Rachel and her very tall, camera-shy companion, Kyle—a smug owner of a Samsung Galaxy phone who taunted me periodically with the amazing shots he could take.
Not to be outdone–here’s one of the best I captured:
We exchanged observations while snapping pictures.
Almost every plant had a ribbon—though some of them could be the floral equivalent of an ‘Honorable Mention’ participant award as far as I knew. I have a policy of admitting my ignorance up front—it saves time and effort.
“They all look so beautiful,” I told her, “I really don’t know how the judges could evaluate the merits of any flower.”
That’s when Rachel dropped her orchid bomb!
“I’m sort of a cheater.” She confessed.
When pushed to explain, she said, “I was a biology major at Grand Valley [State University] and I had this professor who showed us how to propagate orchids using a method of injecting genes to create new flowers. So, I understand a bit more about this than most.” ***
This whole time I’d been standing next to an orchid whisperer and hadn’t known it!
Later, while trying to recapture what she told me, I tried to find an appropriate article on ‘gene splicing’ but failed. I did, however, stumble across an actual process to gene-test an orchid’s D.N.A. to discover its parentage: Orchid DNA
Basically, you can C.S.I. an orchid’s ass to find out ‘Whose your daddy?’ so to speak.
In our many encounters, I mentioned how rare it is for me to get out and interact with the world.
(True Confession Time: I was a bit giddy at the orchid extravaganza. I probably seemed a bit drunk with excitement—kind of like a deranged puppy with a floral fixation.)
I asked if I could take her picture for my blog—and tried to set a ‘privacy’ setting so her picture wouldn’t be plastered all over my feed. But the challenging wifi or vicious internet pixies played havoc with the Facebook options.
Rachel shrugged, saying she didn’t mind. This only encouraged me.
“It’s hard for me to go places sometimes.” I laughed and gave my iPhone a little shake. “So, I kind of live on Facebook. It’s weird, I can live so close to people I know but never get together with them. And yet, this summer, a friend from Japan is coming here and we’re going to meet at the nearby mall!”
Then Rachel said something profound.
“Facebook—it makes the far world closer and the close world farther away.”
It struck me as so true, I made her repeat herself so I could type it in my phone. Yes, I am that pushy.
Every time I ran into Rachel and Kyle, we’d fall into conversation. Well, I babbled at them and Rachel willingly exchanged floral witticisms that I could not possible recreate here. You’ll have to come up with your own horticultural insights, I’m afraid.
Except, I can share one universal truth: “Crab grass is the bitch bane of gardening.”
Everyone I met was friendly, tolerant of my intrusions, polite and sharing. None more so than my next flowery friend.
Gratia Umbra a/k/a Elizabeth N.
A slender blond with an elegance that matched the floral occasion, Elizabeth carried with her a functional camera and used it like she knew what she was doing. So, of course, I asked whether she was planning on posting them online and could I ‘friend’ her to see them.
She politely accepted.
If I were to name her using floral taxonomy, the Latin to describe Elizabeth would be A Shade of Grace or Gratia Umbra.
To Elizabeth, who got the shots I could not make. Thanks for sharing.
I could not conclude this story without letting you know of the absolute perfect ending that almost didn’t happen. A providential duo I would regret not knowing.
Defining them by a flower name that accurately tells you who they are is impossible. But I’ll try. For this couple, you absolutely have to use a crossbred variety. Match a shy, subtly engaging flower with a showy, over-the-top genus to create an utterly unique new combination. I give you:
Painted Hearts x Mirrored Souls
Sometimes, you just know. You look at a couple and know they are meant to go together So it was when I met Nick and Oberon.
I was done photographing the official orchid exhibit. But there is an arboretum that is part of the Meijer Gardens that is a glassed-in heaven in January.
I almost didn’t go. But, rare is my chance to visit the gardens and luxuriate in the peace it brings. And I’m so glad impulse led me to meeting a very special couple.
I wandered to the wall of orchids and sniffed to try and find the one that exuded a glorious, heavy smell that was sweet just to the point of being overpowering.
One of the garden volunteers—the human variety, not the plant kind—corrected me when I told her I loved a particular flower for its heavenly perfume.
“Smell this.” Is all she said.
She thrust a small pot under my nose–tiny fringy leaves with even smaller white flecks you could mistake as dots among all the greenery.
Those dots were actual orchid buds, so small, you had to pay attention to see them.
I did as instructed.
It was like being punched in the nose by the goddess of spring. This confirms a long-held suspicion and I told her so.
“I think the smaller the blossom, the stronger the smell.” I nod in satisfaction. “To make up for not being so showy and bright.”
Saying nothing, she put the pot back and I moved on my way.
Without knowing it, this was the perfect segue to my last encounter of the day.
Getting ready to depart, I was stopped by an incongruous sight.
Among the elderly wanderers, nodding white heads in appreciation of the wonderful view, the families with children, grandparents, and photo-happy parents, there sat a glaring anomaly—a tattooed duo dressed as if headed for a punk rave or a New York grunge art review. Ready for something, anything, more hip than an arboretum.
To Nick and Oberon—for the story about the beehive ink alone—I am indebted. The explanations of a clamshell with the number 13 drawn on your wrist. The laughter and the stories too personal to share here. The tattoo review was the most unique floral exhibit of the day. So if I had to pick flowers to represent you, it would have to be these two–so similar and yet so different, and perfectly matched.
You opened up to a stranger, one arguably stranger than most. You shared your origin stories like the super heroes you are. You let me take pictures that said a lot more about you than words could.
You let me remember what it was like to be young, in love, and filled with the adventure of it all. Thank you.
And yes, I will happily descend upon you the next time I’m in Chicago. I’m dying to color in all those black and white tattoos. Let’s find out if you are brave enough to hand me a needle to try.
And to my final floral tribute – the young man who made it all possible.
You invited me to be part of the human race instead of just an observer. At 26, you understand that connecting with people is more important that getting a perfect shot. I will remember you always and name you for your warm spirit as well as the small bits of fuzz that dotted your baby face.
My Velvet-Petaled / Open Invitation
You are not in my notes, my phone, my email.
I’ve looked for you everywhere.
You are the one who caused me to look up.
To put the camera down.
Hopefully this will find you, somehow.
To the autistic young man at the flower show.
You reminded me to be as well as see.
I dedicate this blog post to you, for without you it would not have happened.
You will forever be a gentle poem in my heart:
And for those curious as to the title of this post, it was the flower name I most identified with. We should all be opalescence on the edge!
Asterisk Bedazzled Footnotes:
*If you ever catch me with a fully-charged device, assume I’ve been kidnapped by aliens and that this is a clone doing research for the impending invasion of Earth. Act accordingly.
**Curse you, Kyle, and your fancy Samsung with those neato photo features. Smugness does not become you!
***This quote is from memory. So, take it with a large grain of salt that I got this at all right.
I was going to title this 2017 – A Year in the Crapper and include an appropriate photo, but my friends tell me I overshare.
So, here’s my modified letter to the world:
2017 KINDA SUCKED
Like burnt-pan-of-forgotten-soup-boiled-dry SUCKED.
It took a whole year of bad things happening for me to put my finger on exactly what was wrong…
2017 – LIKE TREE-EATS-ROOF KINDA SUCKS!
Yeah, yeah. Having a tree drop on your house in a sh*t storm was a pretty big effing clue. But you could just chalk that up to really bad luck and shrug it off. If it weren’t for all those bad juju kinda things that kept happening.
I TRIED 2017. I REALLY DID.
I tried traveling to exotic locations and exploring for fun and adventure. I generally learned there is a diminishing return on happiness. The farther away we got from home, the more likely we were going to need an E.R. trip or an intervention. We are now circling the drain of 2017 and sticking mostly to home as a result.
My son loves to go places and sleep outdoors.
Or so I thought.
Instead, what I found was photographic evidence that my son just likes a variety of places he can write calendars–or, if not writing them, he is contemplating it with a fistful of markers or crayons awaiting his next fix.
My son discovered a love of popcorn. That was a new obsession.
But despite the happiness campaign the people at Orville Redenbacher are pitching, popcorn can’t fix everything.
Not even calendars can do that.
It also took me nearly a year of misery to realize something…
Despite the occasional flashes of joy and happiness I managed to capture…
In most of the photos I took of my son…he was not smiling.
He was there. But he was an unwilling participant in:
Mommy’s Campaign for Happiness and Symptom Control.
If 2017 were a fairytale–it was the Hans-Christian-Andersen-dark-with-a-side-of-maniacal-laughter kind. And it would have opened with this line…
THERE ONCE WAS A HAPPY BOY…whose mother tried to address his recurring rage-outs with a wave of pharmaceutical fixes.
We tried several different combinations of psychiatric panaceas. If a drug caused a side effect, we gave a pill to fix the side effect – or in theory, that’s what it was supposed to do. Instead, it produced yet more side effects that, surprise, surprise, we’d try to address with more medication.
It was the loopiest, saddest, roller coaster of a year you can imagine.
There were the bids for happiness that ended in tears.
Then there was the reality check that bounced. HARD!
Part of me wanted to believe this was a transition year. That turning thirteen and becoming a dreaded teenager was the root of this particular evil. But after several incidents of biting in school this fall, I decided to stop the massively medicated merry-go-round–at least in part.
We backed off the majority of his drug trials. He is back on the two drugs that have the fewest complications and I just deal with side effects that only have him crawling up the walls and not sleeping instead of the combo-platter pharmacopeia backlash that produced jittery anxiety, biting, and head bashing, among other things.
I now take comfort in momentary joys–as rare as a solar eclipse and therefore exponentially more cherished in their singularity.
But when added up in seconds, the joys of 2017 could not outweigh the sorrows.
In this year, I have watched my happy boy transform in a downward spiral of misery and depression, taking me with him.
Then I had to leave my job to take care of him. Because, once he outgrew his handlers, I was the only one who could get him off the bus.
I left a good place to work for a life of uncertainty and near-poverty that allows me to work from home in the hours that my son is in school.
The only upside to this stress? I have spent less time developing an ulcer over the toilet tank of a government where The Great Evil and his Cabal of Cackling Soulless Ones are stirring a sh*t stew for the masses to swallow.
So, 2017–that’s it! I am out of it: Out of work. Out of patience. And now, out of time.
I AM DONE, 2017.
I AM DONE WITH YOU.
I am coasting the rest of this year and hope that 2018 has some upside that I just can’t foresee or imagine. But I doubt it.*
Asterisk Bedazzled Footnote:
*In a traditional end-of-year review, I usually take a light-hearted look at the craziness of my life. 2017 hasn’t been so much crazy-fun as it has been crazy-needs-to-be-committed. I’m not going to pretend otherwise and that’s my gift to you. Some years, all you can give is the honest truth…even if it is wrapped in a craptastic bow.**
**Seriously, though, being sick with cough and congestion this past week may have affected this year’s letter. Perhaps after I finish coughing up a lung, I’ll find my happy place again?
Or, maybe not.
My soul is tHe sound of brEakIng glaSs.
When MY son goes mad.
The sight of a bread macHinE thrown to the floor is Almost funny when it bounces.
Pounding fists, biting, scReaming.
HysTeria is catching.
ScreaMing is too.
“What is your emergencY?”
The police are not the ones who can HElp…but they stAnd by, as helpless as I
HeaRTbeat crashIng, craShing, crashing.
“Take this pill. Now this. And this.”
The doctor is a distant voice: “…he needs an inpatient mental health admission”
A long time coming
Following the amBulance thRough the rain…
Or maybe they are tEArs?
Questions without answers
“He’s just too strong for me now.”
Five people hold down my son for blood tests that reveal nothing wrong.
Vecta trance descends as digital projections swirl and spool
“We have no place for your son. He doesn’t fit the requirement of need.”
Home again, drugged complacence.
What will we do tomorrow…and the next tomorrow…and the next?
Every day is an undetonated hand grenade
You never Know when It will go off
You are grateful wheN it doesn’t.
Until it does.
I scrub blood from my sleeve and watch it swirl down the drain…
Along with the happiness the rest of the day promised.
The clock reads midniGht
It is a new day.
The author is recovering. So her is son. Please be kind. I may not have the strength to answer any questions. Read between the lines above. It says it all.
For now, my son is home and doing as best as can be expected. He suffered no major physical injury. Nor did I. But I need time to recover anyway.
November is National Novel Writers Month. I typically participate and am trying to find the enthusiasm to do so. I may not have energy to respond, but that does not mean I do not appreciate encouragement and understanding.
I will bounce back from this…I am like my bread machine that way.
But not yet.
After sending my son’s teacher an email warning detailing his behaviors, I re-read it and realized I made my son sound like a monster. I am now taking bets to see if/when she resigns. I give her two weeks.
Here’s a snippet of what I sent—only slightly exaggerated. Enjoy
We had another…incident. That’s how it feels, reporting these moments of autism-inspired flare-ups—like filing a police report. You can almost see the mirrored sunglasses glinting as the fictional officer approaches…
IO (imaginary officer): “What seems to be the trouble here?”
ME (me): “I…I…He…and then…”
IO: “Slow down, ma’am. Is anybody hurt?”
ME: (snuffles) “No. Well, just a little.” (rubs hand) “It’s nothing. I’m just crying.”
IO: (looks around) “By the side of the road?”
ME: (wails open-mouthed) “Yessss.”
IO: “Tell me what happened, ma’am.”
ME: (wipes snot) “I tried to take my son to the restaurant.”
IO: (gestures) “This one?”
IO: “And then what happened.”
ME: “Little Man refused to go in…but I made him. And then…” (tears well up again.)
ME: “He lost it. He started screaming and biting himself and fighting me. I tried to stop him. A woman helped me get him to a table and I tried to give him his emergency medicine. While I was getting the pills, he sank his teeth in and I dropped them all over the floor. I was wrestling him, trying to get him calm and he finally started to settle down when…” (starts crying again)
IO: “Go on.”
ME: “…the manager asked us to leave.”
IO: “I see.” (clicks pen, scribbles a few notes) “Was anyone else hurt?”
ME: “No…just my hand. I’m gonna be fine. Just need a Bandaid.”
IO: “Are you going to be okay to drive?”
ME: “In a minute. I’m just waiting until I’m sure Little Man is okay.”
IO: “Sounds like a plan. Take all the time you need.”
ME: (sniffs) “Thanks.”
IO: “Don’t mention it, ma’am. Just get home safe…and take care of that bite.”
With the click of a pen, the imaginary officer walks back to the car and calls it in, then fades away and is gone. I’m left, wondering why days like these are happening more and more often? After forty minutes, we move back onto the highway and get stuck in molasses for what seems like hours in the Memorial Day weekend traffic. My hand stings the whole drive home.
I was tempted to post a video to Facebook. You know the kind. Angry, outraged mother, slams establishment that doesn’t understand her child.* Everyone shares and declares the company the Spawn of Satan. But really, I didn’t blame the management of the restaurant, which I won’t name, but will say, what hurt the most today was not the bite. It was being asked to leave.
In the softest voice imaginable, a young man approached our table where I was standing holding my son in a head lock/hug, and said, “I don’t want to have to ask…you know that.”
He didn’t say the words. He didn’t have to. My son was being more than disruptive, he was having a stellar autism meltdown of galactic proportions. I was just trying to get him calm enough to take him out without an incident and, in a whisper, I told him that.
“How can I help?” He said.
Getting my son to the car was a small trial, but after a Vesuvius explosion of vented rage and frustration, we sat in the car. He fumed. I wept.
People came. People went.
As the meds I’d managed to stuff into my child finally worked, I contrasted this afternoon with the successful-ish visit to school earlier in the day. It was field day and all four of the students in my son’s class participated, or not, as they could. No game went as it was intended—though, the rolling tires up an incline only to chase them back down causing everyone to scatter like ten pins came pretty close. It was a physical metaphor of the emotional rollercoaster of autism parenting. What goes up will definitely come down. Probably with teeth marks embedded in it.
This is the refrain of my life. For every good moment where I manage a picnic lunch in the grass with my son and pictures are captured as proof, there is a corresponding, undocumented, black-hearted despair waiting in the wings to walk to center stage and take a giant, steamy dump.** Guess which memories last the longest?
I have reserved a small, smug nugget in my heart for the moms who struggle with their broad spectrum children. My son has had his moments, but I’ve been able to take him places and do things other families just didn’t. This makes you cocky. You want to think that you have the secret! You know something those other families don’t!
“Just push your child. Find his boundaries and respect them, but keep trying to push them.” I would think to myself.
The boundaries are now pushing back. And, at thirteen, they have the weight of an almost adult behind them. A proto-man who has his own mind and directions and preferences that I am now required to respect. Either that, or be prepared to count my fingers and come up with an odd number.***
I didn’t videotape the experience. I didn’t post it to Facebook. But for a bitter, self-indulgent, desperately tired moment I wanted to. I wanted the pity of nations and the poor-me sympathy of automatic outrage served up on a platter for autism families everywhere. It would feel so good, so soothing to be told I was right. That they were wrong. That people should be more understanding.
!!!VINDICATION IS MINE!!!
But knowing I was the one who pushed my child through the doors when he’d already said, “No!” I knew who to blame.
Being told to leave hurts. Every time. It hurts so very deep, in a place you can’t see and don’t want anyone to know is there. And every injury scars deeper than the last. Keloid patches leather your soul, making the effort to try again that much harder. It’s the smallest cuts that hurt the most; and a life with autism is death by a thousand cuts. With lemon juice squirted in for good measure. And a dash of salt.
So, while the rest of the world expands its horizons this weekend, I am weathering the storm at home, licking my wounds and trying not to be pitiful. Much.
Hopefully by next Friday, I’ll be ready to meet my childhood alter ego on the silver screen. I’ll have my silver arm bands ready and my lasso of truth set for introspection and self-revelation. And forgiveness. And I’ll be Wonder Woman once more.
Asterisk Bedazzled Footnotes:
*Internet Rage Fest–It’s the modern-day equivalent of Andy Warhol’s 15 minutes of fame except that it lasts forever and is shared until it reaches obscure corners of Outer Mongolia and beyond.
**Go ahead, try and scrapbook that image!
***Which my son would no doubt find oddly pleasing. He prefers odd numbers to even. He thinks numbers divisible by two are the devil.
I remind myself that this too shall pass.
EVERY. SINGLE. DAY.
Missing Easter eggs–taken from fridge–still not found?
This too shall pass.
Two teardrop shaped containers of food coloring found in son’s bedroom. Two still unaccounted for. Mattress now looks like Jackson Pollock vomited there.
This too shall pass.
No clean clothes today…most of child’s pants cut up by scissors or missing. Must remember to check the heat ducts later…
This too shall pass.
Looks in fridge. *Stares blankly* Where’d the chicken go?
This too shall pass.
If you are a happy parent, please stop reading here. If you find fulfillment of life in nurturing and raising your beautiful, perfect little yous. Go away. This is not the blog you are looking for and I won’t be nice about it.
If, however, you have had dark thoughts on miserable, cold days. If you haven’t showered in forever and aren’t entirely sure whether it’s Tuesday or the apocalypse. Join me, comrade. And welcome.
While studying to get a degree in Russian Studies*, we were assigned the work One Day In The Life of Ivan Denisovich by Alexander Solzhenitsyn. Its simplistic, yet brutal reflection of the miseries of life for prisoners in a Russian gulag are played out in a single day for the title character Ivan Denisovich. What I did not know then, while reading about the struggles of someone trapped in a cold, cheerless existence, is that it could just as well be a metaphor for what it is like to parent a special needs child.
This too shall pass.
This has become my mantra. This reassurance every time my son finds a new and inventive way to make me regret the wonders of fertility treatments: the bad moments pass. It is a lifeline when you feel you are drowning and desperate options rear their suggestive, ugly heads.
This too shall pass.
Sometimes you find yourself sitting by the side of the road weighing bad to worse choices. Because bad are the only choices you can see.
This too shall pass.
I took my son to a birthday party Friday for the son of a longtime friend in the Autism Community. Little Man refused to enter the building. When finally forced to enter, threw a massive tantrum, beating himself and biting his arms, until he realized he wasn’t getting his way and we were going to stay. He sat rigid, refusing to join in—in a place where other children played jumping on trampolines and swinging from giant swaths of spandex dangling from the airplane-hangar-sized ceiling beams. He tolerated it until I would let him go home again.
This too shall pass.
We traveled to the delightfully grey and 40-degree weather in Traverse City, Michigan. I drove for three hours. Got fifteen minutes in the hot tub of the hotel before my son screeched his regrets and left the pool; I took him for his requested walk to the nearby lake where he promptly wanted to leave; returned to the Comfort Inn to sleep to dream of wifi only to be woken at 6:00 a.m. because someone next door took a shower. This was a good day. No major meltdowns.
This too shall pass.
Then yesterday happened.
I took my son to an event sponsored by the school celebrating a program that is intended to engage children like mine with the neurotypical kids. The ones who can play the games and take part in ordinary life. The children not like my son.**
I run into his teachers and classroom aides.
“Little Man had a really good day today.” One person tells me.
“Really, he was very happy.” Another stops to greet my son.
This too shall pass.
They don’t hear it. They don’t hear the bell ringing, the tolling, sonorous carillon signaling the shift from happy child to frantic, exhausted, terrorized hulk.
Neither do I.
This too shall pass.
We win the most patriot looking red-white-and-blue cupcakes at the cake walk—on only our sixth or seventh time around. *Thank goodness.*
I coax my son into a bizarre game where marshmallows—a food my son loves—are tossed back and forth to be caught in cups. None of the marshmallows are supposed to be eaten, however, because they keep hitting the floor. My son sneaks one anyway, confused that he couldn’t eat them in the first place. Has no one heard of cotton balls?
This too shall pass.
I drag my reluctant child to a photo room where mustaches on sticks and leis are strewn to give families props to stage silly portraits. I manage a few with my unsmiling teen and he drags me out after thirty seconds.
This too shall pass.
He attempts to leave the building by several exits. We have only been there a half hour, but he wants out.
I ‘encourage’ my son to participate in a game in the library and he balks.
“One game. Candy Land…or Yahtzee. Then we can go.” I plead.
It is too much for him.
He is desperate and begins hitting himself violently.
Thwack. Thwack. Thwack.
It is the sound of someone testing a melon for ripeness. It is the distant sound of an axe biting into wood. It is my son’s fists cracking against his skull.
He is crying from angst or anger or frustration or stress or some combination of all of these emotions. Or none. Perhaps he is drained and all that is left is the hollow drum upon which he beats an empty tattoo.
This too shall pass.
I push him into a cozy nook for readers to sit by a pretend fire where a painted tree grows to spread its branches overhead. Or so my vague memory suggests. I was too busy dosing my child with a sedative so I could get him out of the building without scaring or hurting anyone.
This too shall pass.
As I am driving him home, I am blinded. Blinded by regrets that my son cannot take part in fun activities. That I don’t get to be the parent encouraging him to stretch his limits, but instead failing to recognize them in time to prevent catastrophe.
It is as if his emotions have spilled over from where he sits in the back seat tearing strips of paper to calm himself.*** He winds the paper around his fingers and I think, “At least he’s finally using all those summer workbooks I purchased.”
I am crying now for the pain he feels but cannot express. For the fact he can never, ever make any real friends because he has such devastating limitations.
That he is so broken and so am I.
This too shall pass.
I pull off the road because, really, I can’t see now. I can’t see the point in continuing.
I park in an empty florist’s lot. The strip of grass that divides my car from the busy traffic is a green wedge of nature slipped between asphalt boundaries and a Panera coffee shop.
I am tired. I am listening to the recording of my parenting failures skipping and repeating in my head. And before anyone thinks to tell me what I great mom I am. Stop. Just stop.
Because you don’t know the thoughts I had.
This too shall pass.
You don’t hear the insidious little fucking voices in your head telling you that there has got to be an easier way than this. That life shouldn’t be this hard. That life shouldn’t be this…
This too shall pass.
You all think there are programs to help families in need. You all think we are getting help to make it through the every-fucking-day struggle of making yourself get up when black thoughts drag you down.
Maybe there are. But you know what? I don’t qualify for them; barely anyone does. You apply through miles of red tape, applications, certifications, interviews, and, if you are lucky, you are put on a wait list to try and get one of the 450 some slots the entire fucking state has to help people with severely handicapped children who don’t qualify for Medicaid.
You heard me. 450 slots. For a state with a population approaching 10 million.
You all think that there must be someone out there helping families like mine make good choices and to step in when things get bleak or despairing. You would be dead wrong.
This too shall pass.
This is the problem with real life. Ugly thoughts are like rancid cheerleaders rooting for destruction. There are no angels to balance you out. Sometimes the monsters win.
But not today.
This too shall pass.
I watch the robins bobbing on the slender manicured lawn that is trapped on all sides by concrete barriers and the threat of chemical castration or decapitation by lawn mower for any daring weeds. The little red-breasted birds are rejoicing in the abundance of rain-forced worms.
This too shall pass.
I turn on the book on tape I’ve borrowed from the library.
The Magic Strings of Frankie Presto rolls out the welcome mat to sanity and invites me to listen. It takes some kind of talent to write a comedy set around a funeral.
Fifteen minutes later, I’m safe to go on.
If anyone knows Mitch Albom. Tell him, thanks.
This too shall pass.
In writing this, I was reminded that in college, I found One Day in the Life of Ivan Denisovich to be uplifting. Despite all of the misery, Ivan Denisovich finds moments of grace—not religious—but humanizing that help him to eek joy from the life he does have.
Ivan Denisovich got fish eyes in his soup.
I got robins bobbing for worms and the lyrical beginnings of a musician who might be a magician. Or vice versa. I’m not sure yet. The story has only begun.
I’ll have to listen for another day.
Asterisk Bedazzled Footnote:
*Because I’m all about collecting useless degrees. Ask me about my aborted career as a teacher. Go ahead, *cocks imaginary pistol* ASK.
**The normals (aka The Little Fuckers.)
***The real reason why I donated my son’s books to the school—because watching him destroy something I love and had hoped would connect us is too painful.
I am fine. It was just a bad moment. We all have them. Do not contact the authorities or the Department of Human Services. I shared this to let the world know we have a problem with our resources and mental health care assistance to families in need and maybe to let other parents of special needs children know they are not alone. We just need support.
If you want to act, check out our local Autism Support of Kent County (A.S.K) agency http://www.autismsupportofkentcounty.org. They have helped my family as well as others in various outreach programs and financial aid for summer camps and therapies. Their Annual Walk for Autism is Sunday, May 7, 12:00 noon– at John Ball Zoo, 1300 Fulton W, Grand Rapids, MI 49504. If he’ll go, I’ll be the one leading my son around with a bag of marshmallows.