Beating Forever Outside My Chest
by ParentCo.
May 17, 2017
When it happens, it happens with breakneck intensity. Harper lashes out, pinching and pulling, her strength unmeasured. Sometimes it catches me off-guard. Her flame-colored tongue is a fire with angry echolalia, and I try to cool her down, anchor her to the floor with proprioceptive pressure, but it feels as though water is rushing up my nose.
My vision blurs. My head spins. I lose my breath, and my heart sinks. And then, moments later, through a veil of tears, the screaming subsides. Harper is quiet again.
How do flamingoes sleep?
During her meltdowns, Harper has the sharp beak and beautiful wings of an exotic bird. She cranes her neck and retreats into a tuft of colorful feathers when it’s all over. I can’t help but feel as if I’ve lost her, and it’s a struggle to lure her out – a feature Ron Suskind once wrote, “is the crushing pain of autism, of not being able to know your own child, to share love and laughter with him, to comfort him, to answer his questions.”
In those moments, I pray for her to finally voice words like birdsong, all the while feeling like an onlooker in the dark, who both appreciates and laments Harper’s seismic nature.
I’ve been taught to predict her behavior by identifying the antecedents. The idea is to give the outbursts some context. Harper’s tears are predictable, meaningful, if I just look hard enough. And since her diagnosis in 2012, I’ve done just that. My energy has been spent on weaving with a bird’s-eye view the complex network of her sensory diet. Deep tissue massaging and picture books with the spines pecked away have become part of my everyday routine.
I don’t know what it’s like to raise a neurotypical child. Walking around a box store, taking in exhibits at the zoo, I feel uneasy around children who don’t have their vocabularies printed on cards and attached to Velcro strips in a colorful binder. I’ve heard many children recite their hopes and fears. Loud sounds and bright lights don’t seem to bother them. They follow the social rules we all inherently know, and their eerie stillness while standing in a line will set my heart aflutter.
When I respond to those kids with a quizzical look, the same way many adults respond to Harper, I realize that I’m sometimes unfit to be her parent. With the right combination of kicks and tears, my temper can fly away, too. I’ll clip Harper’s nails a bit too close. I’ll tug on her arm a bit too hard. I’ll scream when I simply meant to speak.
If her world often feels like a sea of white noise, mine resembles a straight line that I try to straddle in between meltdowns and therapy sessions, cooking and cleaning, my full-time and part-time jobs, targeted playtime and just simply brushing her bottom teeth.
I miss many of the ticks marking the trajectory of waking up and eventually, frantically, catching some sleep. I don’t always spot the antecedents building to my eventual meltdown. Regardless of how I do or don’t cope, how much I do or don’t understand, Harper’s ability to someday build a nest of her own hangs in the balance.
The thought of Harper’s independence will stay with me throughout my day. It builds into a wriggling worm of anxiety that I have to choke down. Recently, on a cold weekend, I took her to the Children’s Museum. I tried to keep any anxious feelings to myself. Harper showed a skittish curiosity at the Doc McStuffins exhibit as we flew to the top floor. She cocked her head and furrowed her brow in a familiar way – something she does whenever anything is new or intriguing.
Doc is one of those cartoons she will only watch on occasion. Fascinated with music the show mostly lacks, she’s snared by song and dance. It was a struggle to keep her interested in the different checkup stations – cribs with baby dolls and a plethora of plastic medical baubles. All the different sights, smells, and sounds were beginning to snowball.
When the overwhelming input wore her out, Harper’s response was to play with the medical tools, maneuvering them between her fingers with expert precision, like a drummer or baton-twirler. She hummed rhythmically to the back-and-forth movement. This is a kind of sedentary play she uses to help throw cold water on a meltdown, one that the other children bandaging baby dolls in the museum didn’t quite grasp.
I watched them happily share their experiences with one another. While Harper was in a trance, I decided those other kids possessed a kind of sympathy response that is lacking in too many adults, including myself. Like Disney’s child doctor, they felt an innate need to treat the inanimate babies like one of their own, a tendency that doesn’t always surface in Harper. These children were confused by her need to grasp at the baby limbs in recognition of what they actually were—plastic, rubber, lifeless.
That’s not how it’s done, I saw written in their faces.
Possibly harming a doll didn’t seem apparent to Harper. But the children actually wanted to share this knowledge with her, not cast doubtful glances. They tried to make eye contact. They recited their names, ages, favorite colors. They treated Harper like their dolls, and it was apparent to me that the human drive to empathize only diminishes as we grow up.
The harshness of the world ensnares us. Differences become uncanny. We learn to be wary of them. That fear has the potential to make us lock up, seize our hearts and minds, and unlike a lot of kids, Harper soars without fear of heights.
I’ve read that babies are born able to react to another infant’s cry. Early empathy responses in children eventually mature into real sympathy, into a natural need to nurse someone else’s distress. Even apes are known to display what’s called “theory of mind.” In order to navigate the complex schema of our world, we must be able to read the thoughts etched right into other people’s faces. We have to feel their emotions in order to anticipate their actions.
Autism, in many cases, either stunts or arrests this ability. I felt this a few months before the museum visit when I received a phone call from my ex-wife. She said that Harper had killed her pet fish.
“I didn’t even know she had a fish,” I responded.
As much as I still hate myself for it, when she said the fish’s guts were missing, my first instinct was to assume Harper ate them. She’s been known to stick things in her mouth – an incessant habit that feeds my anxiety. I told my ex-wife that I was afraid of Harper growing up to be some powerful invalid, like Steinbeck’s Lennie Small or Shelley’s Frankenstein, some kind of tragic, circumstantial creature that can’t even recognize its own strength.
I don’t think I’d ever voiced that concern to anyone except God, nor have I repeated it since.
It was then apparent to both of us that Harper is likely to grow and exceed six feet. She’s built with an athletic inclination I’ve always lacked. Once, I dreamed she was a giant towering over me. We were in one of those box stores, except this place looked different. The people were all faceless, murmuring something not quite like words. Harper had a meltdown both radiant and large that caused a cataclysm, taking the roof off of the place. I tried to pin down the impressive wingspan of her arms, but I was powerless to stop her as the indiscriminate crowds ducked for cover.
There are days I feel like I’m going to break, and I wish I could be suspended in air.
Several years ago, when Harper’s mother and I were still together, we grappled with the idea that the temper tantrums were something else, that Harper wasn’t going to be like normal kids. On one of the first few family excursions after her diagnosis, we watched Harper jump freely and without reproach on a bounce house. The thought that the inflatable might once have been a padded cell not even 30 years ago filled me with sadness.
I remember Harper taking a break from the reverie to hold her hands to her ears, and at the time, I didn’t realize she was trying to restore balance to a world rocked by sound and smell and swirling color. We thought she just had another ear infection.
I attributed that pain to the way she interacted with a little girl who was pulling at her arm, motioning for play. Smiling, the little girl tried to initiate a game that must have felt like an assault. Harper returned the sentiment by smiling and screaming and scaring the girl away. I felt a visceral valley dividing our daughter’s social interactions.
When I was a kid, bridging that gap in making friends felt impossibly wide. I often wanted to retreat – and I was lucky enough to have the power of speech. Harper has since been braving the world without it.
We grow up learning to fly low and color our worlds between the lines, keeping our emotions in check and smothering any behavior that might seem odd. Social norms culminate into a complex game with dire consequences if not played correctly. In this sense, humanity is its own worst enemy.
I’m painfully aware of the fact we live in a world where overwhelmed parents will sometimes smother their babies. News articles are written about far-off places like Bucharest where autistic people are plucked from their homes and placed in state institutions. Their heads are shaven. They’re beaten, sedated, and tied at the wrist, allowed to molt, to eat from trashcans and piss their beds. They’re not given sympathy or understanding. They’re caged, and it takes everything the overwhelmed staff can muster to help alleviate their patients’ horrendous autistic afflictions.
You might have heard that the intellectually disabled in places like Tokyo have been victims of mass stabbing attacks. Or you might have read Neurotribes from the writer Steve Silberman, who recently shed light on a disturbing facet of Nazi genocide – that the eugenics movement in America encouraged the forced sterilization of autistic adults and helped launch the beginnings of the Holocaust.
That was in Germany, but Geraldo Rivera showed the world in 1972 that the Willowbrook State School on Staten Island operated as a “warehouse for broken children.” The kids deemed “mentally retarded” were sexually assaulted, forgotten in dark rooms where they might have once sought refuge from the confusing sensory input of the outside world.
Why would we, as caring, sympathetic human beings, let young adults like 24-year-old Andrew Parles detach his own retinas through self-injurious behavior when we can do it for them? Staten Island is not-so-far-off. Unlike Bucharest, it has a name we can pronounce in a country where people are supposed to understand and protect Harper.
The first time I filled out a sensory profile for Harper was in preparation for preschool. The questionnaire comes from The Psychological Corporation. Widely used as an assessment tool for speech, occupational, and developmental therapists, it’s a 125-question, eight-page-long test of a parent’s patience, printed in a pleasing palate of purple and teal. Caregivers rate their child’s sensory processing, modulation, and emotional responses on a scale of “always” to “never.”
For example, how often does Harper hold her hands over her ears? Frequently. Is she easily distracted? Always. Is she happy to be in the dark? Is she distressed by car rides? Occasionally, I think. Does Harper enjoy falling? Rate how much she twirls and spins, gets messy, avoids wearing shoes, mouths every damn object, moves stiffly, makes eye contact. Does she cry, Dad? Is she sensitive? Does she even have a sense of humor or express human emotion at all?
Tick marks mark the trajectory of Harper’s school year. Tick. Tick.
According to the questionnaire, I also am often stubborn and uncooperative. My writing is illegible, too. I avoid splashing water and find it difficult to change my routine. I sometimes find refuge in the dark. I get tired easily and have trouble lifting heavy objects. Who doesn’t? I’ve hurt others for the sake of it, and I might do so again if the urge ever overcomes me.
The question that still sticks me in the gut time and time again is whether or not she ever expresses feelings of failure. I can’t say I really know. The questionnaire doesn’t ask me if it’s my biggest fear. It doesn’t recognize the aching despair a stranger’s eyes give me when Harper and I walk downtown. There’s no essay section to express my desire to ask Harper how she’s treated in school, if she has any friends, if I’m being the father she wants or needs.
Well-meaning professionals have never wanted to know that Harper is a piece of me. She’s a reflection of both what I am and what I could be if I just tried harder. Unlike me, she doesn’t treat the world like a cynical affair. She doesn’t question the very essence of God that flows through us all, the love that directs us not to hate or do unto others what we ourselves could never stand to bear.
Her meltdowns are merely a reaction to a confusing world that doesn’t follow the rules she already knows. They’re rules I’m just now beginning to understand: The sky is beautiful and squishy sand is ecstasy.
I’ve learned to identify the antecedents. They are the instances I’ve disappointed Harper – any time I’ve misunderstood her intentions or moments in which I didn’t stop and take the time to speak her language. The antecedents are my impatience. My temperament. My anxiety. My never-ending need to craft an illusion of perfection that forgoes true happiness in favor of a fear that Harper won’t be another puzzle piece.
You see, many autistic markers are just the traits of being human. They’re the small quirks and pleasures we forget to enjoy as we grow into adulthood. We’re all flocks of individuals on a continuum, and Harper is worth more than many sparrows to me. She is a whole, harmonious personality that cannot be quantified.
The real, crushing pain of autism is not a child’s retreat. Harper has never retreated. She’s been right in front of me the whole time, and unfortunately for her, it’s taken me too long to learn how to speak in whistles and chirps.
How do flamingoes sleep? They sleep like the rest of us.
ParentCo.
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