The Ones On His Fingers

 
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Cutting a baby’s fingernails is the absolute worst. Declan was born in the middle of a heat wave and we took him home to a house with no air conditioning. I quickly became paranoid that he would overheat, so we basically didn’t dress him for the first two weeks of his life, let alone adorn his baby claws with those puffy little mittens. When he scratched his face for the first time, I made Matt cut his nails. Of course, we clipped him. Declan cried.

That was one of only a few times we’ve ever needed to cut Declan’s fingernails. Sometime shortly after he turned one, he began compulsively chewing them off. It started with just the nails. By the time he was four, he couldn’t stop himself from chewing the skin clean off his fingertips. And it wasn’t just his fingers—it became obvious that he needed something to chew. His preschool teacher noted this and accommodated him quickly. For about a year, Declan carried around P shaped chewies. He loved them, and I loved that he was no longer hurting himself. We even found some in cool, subtle shapes. His favorite was a turquoise shark tooth that he lost at least a dozen times. The batman was a swing and a miss—it was too pretty to chew. It was one of those rare, wonderful solutions that worked so seamlessly it had to have been too good to be true.

And then it was.

One day last spring, Declan came home, threw off his chewy, and told me that only girls wear necklaces. Fun thing about Declan: Though he had (and still has, to an extent) a language delay, he has always been a wonderful mimic. Before he could talk in full sentences, he could parrot back whole chunks of conversation, verbatim, that he’d heard throughout the day. Last spring Declan still struggled to summarize events, and when he wanted to communicate something important from his day, he’d slip into this echolalia. It had always struck me as beautiful—melodically staccato in his husky boy voice—until he started echoing back the insults his classmates made about him.

We tried everything we could think of to convince Declan that there was no shame in wearing his necklace. We showed him pictures of his personal hero, John Cena, wearing dog tags—I even found a chewy resembling the ones John Cena wore—but nothing worked. Another fun fact about Declan: he might be more stubborn than I am, which is a truly terrifying thing.

So he went back to chewing his fingers raw. I bandaged his hands almost nightly. He cried when he drew blood but went back to chewing anyway.

I worried about what kindergarten would do to him. I worried he wouldn’t make friends, or that he’d be made fun of. I worried that the birth of his sister would upend his routine—that changes in therapists and teachers and classrooms would be too much to ask of my steady boy, the singular most predictable person I know.

Here’s the thing about anxiety: It draws out every last painful note of bad situations, but it muffles the melody of good ones.

Declan’s kindergarten classroom is just across from his PreK room. He discovered that kindergarten boys are pretty easily won over by fart jokes. He was invited to a birthday party for the first time. He joined a soccer team, and even though he’s actually pretty bad at soccer for now, watching him jog around with six other green blobs on a field is the highlight of my week. His baby sister was born two days after Christmas, and Declan took her under his wing like she’s been part of our family all along. He scolds me when he feels she’s too cold, or too hungry, or just generally too unhappy. He’s said goodbye to beloved therapists with relative good grace and has taken to new ones just fine. He sang all the words and performed all the motions at his school’s Fine Arts Night.

And just last week, I cut his fingernails for the first time in four years. We’ve been humming along to the good times ever since.

 

The One On My Heart

 
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Photo credit: Chelsea Anderson Photography

Last summer, Declan had the honor of acting as the ring bearer in a friend’s wedding. He was hesitant, at first. We made clear that we wouldn’t force him to do it if he didn’t want to, but we also told him we thought he might have fun, and it would mean a lot to the bride.

He eventually decided to do it, and the wedding itself was great. Declan was so proud of himself after he walked down the aisle; he felt so important in his little suit. The cake didn’t hurt, either.

The night before the wedding, though, was difficult.

After a brief run through at the church, everyone met at a nearby Mexican restaurant for a celebratory dinner. It was loud and crowded. It took awhile to get our food. Declan was spent, and I knew it. When I knew the noise and the wait was becoming too much for him, I took him to the lobby of the restaurant where I’d seen a few games on the way in.

We walked to the car to get quarters, and we hung out in the backseat for a few minutes. Declan visibly relaxed, and I decided it was a good time to try heading back inside toward the game.

As luck would have it, the game in question turned out to be one of those impossible to win claw machines. I tried to dissuade Declan—I tried to communicate that we very likely wouldn’t win—but I’d already promised him he could play, and he didn’t understand what I was trying to tell him.

So I let him give it a go.

Of course, he lost, and like any kid, he was let down. This meltdown wasn’t an angry one. Declan was beside himself. I gathered him up into my arms and brought him outside where he could have his moment in relative privacy. Unfortunately, there was little buffer between the sidewalk and the road. When Declan attempted to throw himself toward a moving car, I picked him up and brought him back inside. I knew he wouldn’t want to be touched, but I also knew picking him up was the only way to get him inside. The physical touch agitated him, and, in addition to his wailing, he began headbutting the floor.

I whispered breathing techniques at him, which sometimes worked but didn’t this time. I pulled up his favorite song on my phone and, just as he began to calm down, a group of women passed us on their way toward the main part of the restaurant.

“Fucking retard,” one of the women slurred.

I don’t know that I’ll ever be able to describe the emotions I felt in that moment. Angry. Angry was the first thing I felt—and not a regular kind of angry—the kind that is all consuming and so filled with adrenaline that you begin shaking. The kind of anger that seems like it will only be satisfied by hitting something. I resisted that urge, but I did yell after the woman—I don’t even remember what, at this point, and it doesn’t really matter, because by the time I had enough presence to say anything the door had flapped closed behind her.

Guilt. Guilt was the second thing I felt.

Didn’t this woman know that the meltdown wasn’t his fault? Wasn’t it obvious that I was the one who missed his more subtle cues? I was the one who placed him in a situation that could only end badly.

Sadness came next—a soul crushing sadness when, as Declan and I both calmed down, he asked innocently “What’s a retard?”

Most people will never understand what it’s like to explain to their autistic son what a “retard” is and why some margarita-laden-woman in a Mexican restaurant yelled it at him.

I don’t remember if I got bit and it didn’t really matter. The wound this time wasn’t delivered to my chest, but to my heart. When Declan bit me on the chest six months before, it was because he was overwhelmed and anxious—because he likely felt insecure and threatened. When this woman called my son a retard she did it willfully—she did it because she thinks it’s a dirty word, because she thinks people like my son are unfit for public places, because she doesn’t understand or care why meltdowns happen.

The scar on my chest isn’t a big problem. It’s a relic of my boy and the life we’ve lived together. The scar on my heart is the wound we should be concerned with—it’s a symptom of a much deadlier disease, indicative of a community that has no room for wonderful people like my son.

I will not accept that. I am not okay with a world that excludes my boy, and if I have to forcibly create room for him, I will.

My biggest regret from that day is the fact that I waited until the door closed before I thought of something (anything) to say. It’s that this woman continued on with her life unchallenged.

Sometimes I talk too much about my son’s autism—I know that. It’s a choice I’ve made because you don’t get to pretend he doesn’t exist anymore on the basis of your own discomfort. It’s a choice I’ve made because the scar on my heart isn’t as much a scar as it is a loosely bandaged, bleeding wound.

 

 

The One On My Chest

 
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My body is littered with Declan shaped bite marks.

For the last year or so, Declan has done such a good job regulating his emotions that sometimes I forget there was a time when he didn’t. Some days I take for granted the transitions that used to take painstaking effort—I forget the fits, which are practically nonexistent, lately, until the sunlight catches my skin just right and I can see faded teeth marks. These days the only relics of those meltdowns are the forgotten, faded bite marks that used to wind regular patterns up my arms and legs.

I don’t know why Declan used to bite me—and, to be clear, it was specifically me. He had fits with other people, but not in the same way. It was rare that Matt walked away having been bit, and at least once a week I bandaged up bloody spots where his teeth broke my skin. It was part ritual, part overwhelming anger, and part desperation. His whole body would shake as he bucked against me. Often he’d try to headbutt the floor or a window or some other unforgiving surface, and when I intervened I’d take the brunt of his force instead.

There was little that could be done once a fit started, but I learned to predict them—to identify and avoid the triggers—and soon our days amounted to meticulously managing the world so as to not upset the precarious balance we’d struck. It was hard work, and not just for me—it was exhausting for Declan, too. It was exhausting, I am sure, to be overwhelmed by noises nobody else could hear, circumstances nobody else was bothered by, and to not be able to communicate any of it.

But I know that boy like the back of my hand, and I figured it out, slowly, without words.

The grocery store was out—the scanners set him off. Once the radio station was tuned, it stayed on that channel. Period. We took the same route to daycare (and then school) every day except Friday, which is our designated donut day. If he had to go to work with me, we stopped to hug his favorite fire hydrant and entered through his favorite door. His shoes had to be laid out on the bench. He couldn’t handle the transition of taking off his pajamas in the morning, so he slept in his underwear.

I could go on, but I won’t—you get the picture. There were a million rules that seemed meaningless to us at the time but weren’t. They were important to him. And if we had to break the rules, we had to break them, but it came at the price of a meltdown. Not a temper tantrum, a meltdown.

By Christmas of 2016, I was pretty good at managing Declan’s days. I tried to include enough “rule breaking” to stretch the limits of his comfort zone, but not so much that he became dysfunctional. I started seeing the world the way Declan might; I paid attention to things like the noise of fluorescent lights, or the way pots and pans banged together when I did the dishes, or the abruptness of people’s voices when they gave praise. Despite this learned perspective, though, I dropped the ball shortly before Christmas of that year.

I had a day off of work and, in a fit of bravery, I decided to take Declan up to the science museum about an hour away. Usually I’d need Matt to accompany me on such trips. Declan was strong enough and heavy enough at that point that if he really got out of control, I couldn’t physically carry him to the car. I wanted a day with my son, though—just me and him—so we went. It was the best day. Nothing went wrong. He had a blast. Sometimes I wonder about the kind of moments I’ll remember at the end of my life, and that day is one of them.

So when Declan wanted to go back the next day with his cousin, both Matt and I were eager to take him. I knew he had OT that afternoon. I knew that his cousin had slept over the night before. I knew it would be too much for Declan. But we’d had a perfect day only 24 hours before; what should have been too much for him that day wasn’t, so I kept my mouth shut and trekked on down the road.

By the time we got to OT, Declan was a mess. He didn’t want to say goodbye to his cousin. He couldn’t understand why he had OT—OT days were Thursdays after school, and he hadn’t gone to school. I let him bring the iPad into the waiting room, something I almost never allowed, because it was the only way to get him out of the car without forcibly removing him.

As our appointment time neared, I informed Declan it was time to put the iPad away. That little screen, it turns out, was the only thing keeping our proverbial ship afloat, and its removal triggered an unspeakably large meltdown.

A meltdown at home or in the car is hard. A meltdown in front of four other moms (and one dad) in a quiet waiting room is the actual worst and if I had enemies, I wouldn’t wish it upon them.

First came the headbutt, which was how I knew it would be bad, and then the biting. When Declan couldn’t reach my arms, he bit the only thing he could reach, which happened to be my chest, and which hurt exactly as much as you think it might.

So, to recap—the scene was complete with a screaming, headbutting child, four other moms (and one dad), all of whom I about flashed as my four year old bit my chest so hard that I bled through my shirt. If this ever makes it into a sitcom I want royalties.

Because there is a God and he is merciful, Declan’s therapist called us back at that moment.

He eventually calmed down. We got him home and I washed the tears and snot out of his hair, which he hadn’t let us cut in almost a year. He fell asleep to the glow of his solar system night light, which had been lighting his dreams for two years, at that point. We said the same prayer we always said—three times, the way we always did.

And then he opened his eyes in a way he never had and uttered a phrase  he almost never said. “I love you, Mama.”

And “I love you, Mama,” has been part of our bedtime routine ever since.

 

But I Would Change The World For You

 
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I woke up on November 1, 2015 to the sure knowledge that my son was autistic. We’d wondered for years—friends and family had gently prodded us to seek an evaluation—but I lived in denial until Declan nearly threw himself down a flight of stairs on Halloween. He was visibly overwhelmed by the lights and noises and costumes—by my insistence that he just fit in with the rest of the world—and when he tossed his small body toward twelve unforgiving concrete steps, I barely stopped him. I caught him up in my arms and felt him quivering there against my chest—thrumming like the wings of a hummingbird.

He cried until I took him back to the car, and then I cried until we got home.

I felt a lot of things. Fear. Anxiety. Sadness. Hope. Determination. Love. Love, love, love.

And I felt helpless. Helpless is still the thing I carry around with me, most days.

I did everything you’re supposed to do for a child on the spectrum. Speech therapy, occupational therapy, ABA, when we finally got off the waiting list. We didn’t leave the house without noise canceling headphones. I made my own visual schedule to ease Declan’s anxiety with transitions. Those things helped. They helped Declan find good ways to be angry, to feel less overwhelmed by changes and transition and the general noisiness that is the world. They helped him take the things inside his head and put them into a language the rest of us could understand.

But none of it stopped a stranger at a restaurant from calling him a retard. It didn’t stop two elementary school kids from calling Declan’s name just to mock him when he couldn’t hear it.

Helpless. That is why I feel helpless. Not because Declan needs fixing, but because the rest of the world does. I can help Declan. He’s one unique, wonderful little boy with a neurological disorder I wouldn’t cure if I could. But the world—it’s big, and it’s filled with stigmas and misconceptions and, to be frank, sometimes just outright meanness that I feel powerless to fix.

My favorite mug says the following, and it makes me feel a little less helpless:

"I wouldn't change you for the world, but I would change the world for you."

 I’m outnumbered and I’m outgunned. A few published articles—a blog series once a year—it’s not much. It’s not going to fix the world before my boy has to come to grips with it. But maybe it will help.

That, in short, is why I insist on telling our story—because it is important, because I want to affect change, and because it’s the kind of beautiful that should be accepted. That said, I try to be careful about telling Declan’s story; it’s his, after all, and I want to honor that. Like any story, it’s not always easy—it’s downright exhausting, at times, a reality I’m slow to disclose to the collective internet because I don’t want to arm anyone with yet another reason to judge my son. It is for that reason that last year’s series mostly included the unnoted beauty of autism. This year’s will be a little different. I’m going to (thoughtfully, responsibly) share some of the harder moments. Those moments are part of our reality—a part of our reality we have accepted, and one we wish others would make room for, too.

Because of our family’s stance of autism acceptance, each post will circle back to that. One of my last posts will address questions we get frequently (and some that have been posed recently), so feel free to add any you might have along the way.

I’m looking forward to this series and hope you are, too, but if you only have time to read one thing for Autism Awareness Month, consider checking out blogs by Autistic people. This is a good place to start:

https://anautismobserver.wordpress.com/

 

For My Daughter on Women's Day

 
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(Okay, so I’m a day late, but my head hurt so badly yesterday that I couldn’t look at a screen.)

I was afraid to have a girl until I picked out her name.

That might be strange to say, but it’s true. I’d been a “boy mom” (whatever that is) for five years, and the idea of a daughter was equal parts wonderful and abstract. I joked that I wouldn’t know what to do with a girl—I’d just treat her like I did her brother and hope for the best.

But there was some truth to that tongue in cheek quip. I know firsthand that the world is not the same place for women that it is for men—we begin drawing arbitrary, often hurtful distinctions between girls and boys before they’ve even exited the womb, and I feared that for my daughter, in a way.

We didn’t find out we were having a girl until the end of July, but I knew it deep in my gut the week before the ultrasound. I knew it because I found the name Jemma, and it fit with the kind of rightness that soothed all of my fears.

I don’t usually have much time to binge watch, but binge watching is how Jemma got her name. Up until June of last year, I not only worked full time, but I was also putting myself through grad school, coordinating 10-20 hours of therapy per week for Declan, and freelancing when I could. When I resigned my position to student teach, I intentionally left myself a month or so of breathing room. During one of Declan’s ABA sessions, I put on Agents of S.H.I.E.L.D (that’s seriously a pain in the ass to type), and I knew almost immediately that the child in my belly was a girl, and it didn’t scare me because I knew her name.

Jemma Simmons is one of several strong female characters on Agents of S.H.I.E.L.D. She is equal parts kind and brave—she is logical, intelligent, and a brilliant scientist. I learned at an early age to pretend to be less intelligent than I am. I learned that offering up my opinions in class made me a know-it-all—that I surprised people by being logical. That girls today can rally behind pop culture portrayals of women as smart and strong—of women with agency and autonomy—moves me deeply. Watching Jemma Simmons nonchalantly embody the traits I was discouraged from in girlhood inspired hope for my daughter—for my Jemma.

Darling girl of mine, you are so small, still, but we are carving out enough room for you to grow as big as you want to be. Happy Women’s Day, Jemma Jane.

The Kindergarten Bathroom Incident

 
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I have never liked not knowing things. It’s something about me that has positively impacted my life in a lot of ways, but has led to some pretty bad habits, too.

When I was five years old I moved from Aurora, Colorado to Sandwich, Massachusetts. Everything was different. No mountains, too many pine trees. Altitude changes so drastic I had nosebleeds almost every night. Bigger room, smaller house, etc. But the thing that absolutely, irrevocably changed my world was the onesie bathroom conveniently located inside my kindergarten classroom.

Oh yeah. I could get used to this kind of luxury.

I invented reasons to go to the bathroom. I wasn’t even trying to get out of work, I just couldn’t get over the novelty of not even having to leave the comfort of the book nook to pee. Circle time? Let me just pop on in to the ladies’ room first. We’re reading Clifford? BRB, quick pee break. On one such excursion I noticed something I hadn’t before—a metallic little fixture just above the door knob. Now, we had locks in Colorado so I knew what this was and, drunk on kindergarten power, I locked the door and peed.

I was feeling pretty full of myself until I finished washing my hands (model 5 year old citizen) and tried to unlock the door. It wouldn’t budge. In retrospect, I probably just didn’t twist it hard enough, but I panicked and convinced myself it was either broken or I wasn’t doing it right.

It felt like I was in there for hours when Sam, the classroom nice guy/the love of my life knocked on the door.

“You’ve been in there forever. It’s my turn.”

I froze. Despite our obvious chemistry, I was painfully shy and had never actually spoken to Sam in my life. The first words I uttered to him would absolutely not be “Sorry, Sam, I accidentally locked myself in.”

“Mrs. McArdle, Valerie won’t come out of the bathroom.”

There were two Mrs. McArdle’s in my elementary school—kindergarten Mrs. McArdle and first grade Mrs. McArdle. The former was the nicest teacher in the school and the latter was Satan.

“Valerie,” Nice Mrs. McArdle cooed, “is everything okay in there? Sam says you’re refusing to come out. Is that true?”

Alright, sure. I’d play it that way. It wasn’t that I couldn’t figure out how to work a simple lock, it was defiance. Hell yeah, Mrs. M, I’m refusing to come out.

I don’t know how long we stood at a stalemate for, but when you’re pretending to barricade yourself in your kindergarten onesie bathroom and you’re pretty sure you just caused Sam to pee his pants, everything feels like a really long time.

Eventually a firefighter came and forcibly opened the door.

Okay, so in retrospect it was probably just the school resource officer, but I swore at the time it was a firefighter.

But that’s not the point. The point is that rather than admitting I couldn’t figure out how to operate a simple deadbolt, I allowed my teacher to call emergency services to extricate me from a bathroom.

I tried to look badass when I walked out. Sam stood flabbergasted in a puddle of his own pee. (Admittedly this was going to put a strain on our relationship.) I slung my Simba backpack over one shoulder (one shoulder felt right), and leaned into my newfound reputation.

Here’s the thing—I still don’t like being wrong, but I know that if we all walk around pretending we’re always right we’ll wind up locked inside a proverbial onesie bathroom.

 

An Afterbirth Story

 
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Snapshots of the afterbirth stories nobody photographs:

“At our hospital, babies are only kept in the nursery for medical needs, such as circumcisions.”

“I had a girl.”

“She’s beautiful!”

But like, obviously not in need of a circumcision. I labored for six hours through a migraine, and after that I forcibly expelled a literal human being from my body. I did not eat for twelve hours. I received stitches in the last place anyone wants to receive stitches. And for the first 36 hours after that, I don’t sleep for longer than thirty minutes at a time. Sometime around 2 AM during my second night there, I pull the “my husband is home with my autistic five year old, who is currently projectile vomiting” card, and a kind nurse takes pity on my soul, wheeling the wailing basinet away to the nurses’ station.

But my five year old autistic son actually is at home projectile vomiting, so I mostly just (figuratively) toss and turn—figuratively, because 800 mg of Motrin every eight hours doesn’t actually do much for the pain.

***

A purple can of Lysol sits on the corner of my TV stand. Every morning, by soft blue fledgling light, I systematically spray down every surface in the house. Images of a sick, waning baby intrude into my thoughts compulsively—a ham fisted tyrant nobody looks in the eye, and that purple can of Lysol is my unlikely hero.

***

Stretched and marred skin hangs over the rim of my pre-pregnancy jeans. Breastfeeding does not “melt the weight right off.” A small surge of pride courses through me when I think of what this body did. Facebook ads and summer body stereotypes attempt to infect that pride. I pack away my size eights. It doesn’t even hurt.

***

The stomach bug rings out like a gunshot at 3 AM. My husband hangs over the toilet while my daughter sits in a bouncer only a few feet away. There is not enough Lysol in the world to ease the overwhelming panic that crashes over me for the next few hours. I don’t sleep. Morning is a reprieve because I’m not alone with my panic. I’m humming with nerves as I flit from one room to the next, gathering the things I need for a lactation consultation I’ll be attending alone, now. Declan needs cereal and the correct Hulk cartoon. I pretend to know what Jemma needs, but in truth I’m throwing things against the wall and hoping something sticks.

***

My daughter cries every time I’m near. She smells my milk and the instinct to eat takes her over, whether she really needs to or not. I am indifferent at best toward breastfeeding. It isn’t the beautiful bonding experience countless pamphlets and internet activists promised me. It’s not particularly difficult for me, and I don’t suffer any supply issues, so my distaste for the whole thing makes me feel guilty.

***

A friend comes over to shoot some newborn pictures. Jemma cries intermittently the whole time. Declan can’t control his body, and he moves like a pinball flung here and there by some nameless hand we are slaves to. Our friend sends the finished products on Martin Luther King Jr. Day. Even though I’m anxious to see, I ignore the waiting link for a few stolen minutes of videogames with my boy. When I get around to looking, there is my imperfect family perfectly captured. Light comes through the window just right. You can see the mural my husband lovingly, tirelessly painted on the nursery walls. I happened to be wearing the soft yellow cardigan I labored in, and it warms me to look at.

***

Jemma is displeased, to say the least, when the car stops, making an elementary school pick-up line the last place on earth I want to be. I let a steady stream of curses fly under my breath as the SUV in front of me takes too long to go. When my boy opens the door to clamber in I smile and ask how his day was.

***

Sunlight beats down on the rain soaked ground for the first time in recent memory. I dig out my running shoes, pack up the diaper bag, and drive down to the Huckleberry Trail. The purple Graco is awkward to run with. The wheels don’t lock and I struggle to point it in a straight line as I go, but every time my worn shoes beat the pavement I come a little more alive. Jemma sleeps the whole time plus some. It becomes our new ritual, every morning after drop off. The skeleton of who I was fills out with every God given, burning step. I become an individual again, me and her together.

***

 

How To Shuck Corn Quickly

 
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Step one:

Ignore the doctor’s call at 8:39 a.m., because it’s your day off and because does anyone ever answer those calls?

(In retrospect I should have answered. It would have saved me the mini-heart attack induced by glancing at my iPhone's clumsily transcribed version of the voicemail.)

“Dr. Zolovick…nothing to worry about but..”

Step Two:

Deduce how big the but is. Like, are we talking those photoshopped Kim Kardashian pictures circa 2014 or…?

I called back two minutes later and held for about five, but it didn’t take me that long to know what the doctor would tell me—I knew in my gut that this was about the Down Syndrome screening, and it was. Both of my blood tests had come back positive, and because they couldn’t get the ultrasound shot they needed weeks prior, my chances of having a child with Down Syndrome increased by something like 800 percent.

Step Three:

Rip the husk away.

It took nine days for the NIPT blood test, which assessed baby’s DNA, to come back. It took only hours for the fear of God to come upon me, and here’s the thing—it had nothing to do with who my daughter was or wasn’t.

I wasn’t afraid of Jemma. My autistic son has drawn my gaze to the innumerable beauties of atypical lives, and chief among them is this: humanity gathers up the terrible abstractness of medical disorders and folds them into glimmering treasures.

I never doubted my daughter’s goodness or value; my desire for this little life, kicking inside my womb, never wavered.

But I don’t know Jemma yet. At the time of the original news, we hadn’t even settled on her name. I don’t have a tangible human being to gaze at—no squirming love in my arms to assuage the terrible abstractness of medical disorders.

I had only the husk of a person I’d been subconsciously building up since even before her conception. I had only my accumulated desires for and assumptions about her life, and the husk that took years to meticulously build took two minutes to rip away.

That was what hurt—not her personhood, but the harsh exposure of my illusions as simply that—illusions. I coexisted with a terrible fear for nine days—a fear not that she’d be imperfect, but that I already was. The weight of having not one but two children with special needs hit me like a brick.

Step Four:

Construct another ill-advised husk.

You know it’s a hollow exercise that ultimately detracts from your baby’s humanity more than it adds to it. But do it anyway because you’re a human being who can’t help but err, and because the illusion of your own expectations is the closest thing you have to control.

In this husk, there is room for a baby with Down Syndrome. Fall in love with that baby. Imagine her beautiful little face. Imagine the wars you’ll wage for her. Mentally construct the angry letter to Babies R Us demanding they include more children with Down Syndrome on their advertisements. Maybe then other parents will build their husks with room for Down Syndrome.

Step Five:

See step three.

I was overwhelmingly relieved when I received the news that results showed a (seemingly) typically developing child.

I felt a little guilty that I was so relieved.

And I felt a twinge of sadness for the other daughter I’d taken nine days to imagine. Because she would have been beautiful and worthwhile, and I would have loved her fiercely.

Step Six:

Continue to ride the wave of mixed emotions.

 

The Autism Lie

 

This post is the fourth part of a series for Autism Awareness Month.

Here is the lie we tell ourselves about autism: People on the spectrum don’t want friends.

We tell ourselves this lie because we don’t always understand people with autism; we believe it because it’s easier not to try.

I’ve encountered a lot of myths about autism—I have knowingly and unknowingly perpetuated some of them. But this is not a myth, it’s a lie—and I cannot stand for it.

My son began attending public school this year, and I went out of my way to buy him the perfect first day of school shirt. It was one of those Ninja Turtle numbers with all the bells and whistles. I spent ten too many dollars on it knowing good and well he’d outgrow it before spring. The funny part is that he doesn’t even really like Ninja Turtles that much. But then, I didn’t really buy the shirt for him—not directly, anyway.

I bought the shirt for the other kids—the primal little creatures who, even at four years old, smell “different” from a mile away and swarm like sharks in bloody water. I bought it on the outside chance that one of those kids might think “sweet shirt” and mistake my boy for one of the PreK approved cool kids.

They did not.

A few weeks ago, at his school’s annual “Fine Arts Night,” I watched Declan chase down his classmates with an incessant “Hi! Hi! Hi!” mantra. Most of those kids ignored him entirely and, here’s the kicker—Declan was not remotely surprised. At four years old that’s what he knows to expect from interactions with his peers: a lopsided communion, one in which he’s ignored at best.

I doubt his classmates know what autism even is, let alone that Declan has it, but I won’t be surprised if, one day, even the kind kids tell themselves “he doesn’t want friends.” The magic little lie that turns exclusion into a mercy.

I sometimes joke that Declan likes dogs more than he does people. This isn’t true, exactly. Declan approaches dogs with confidence and kindness because there are no unwritten human rules to sidestep—landmines you’re only aware of once you graze one.

We have intricate, systemic social codes and the majority of people understand them. They’re useful things, sometimes—and when someone deviates from this system it’s easily noted. It’s often awkward. And I get that.

So feel uncomfortable when my son quotes wrestling songs at you—Lord knows I did when the lyrics happened to be “I hear voices in my head, they council me they understand,” quoted at a store clerk. Help him along when he can’t get past the “hi” part of a conversation.

But know that when you refrain from interacting at all, the only charity you’re extending is to yourself. The fact that he doesn’t engage in friendship in the usual ways doesn’t make him an island unto himself, content not to engage in friendship at all.

Maybe this is why Declan loves dogs: When he calls Fenway’s name, our pup comes running eagerly. He has never noticed the Ninja Turtle shirt.

 

A-Word Awareness

 
 

I used to toss his name out like a boomerang with a silent prayer that it would come back to me. Sometimes it did. A lot of the time it didn’t.

I sat on our swing pretending to read while he toddled in the flowerbed. We never did plant anything there. I just wanted eye contact. Or a smile. I kept a tally in the corner of page 151. He heard me twice. Four times his name sailed by him, a baseball he didn’t know to catch. My stomach sank.

We had his hearing checked more than once. I started using words like “sensory integration” and “selective mutism” because they made me feel more comfortable. I crumpled the page of printed research my mother-in-law sent home. It’s in a landfill somewhere now. I snapped at my sister for using the a-word. She’s since forgiven me.

We took a vacation to Myrtle Beach when he was three, and we ate out a lot. I had no explanation for the baffled waitress when he began compulsively peeling the entire basket of restaurant crayons. His coloring page stayed blank. It was the first time I wished for the label “autism”—a term that might help the world forgive my quirky boy.

We have the label now but it doesn’t usually make much difference. That’s okay, though. The glances don’t bother me as much anymore.

My son is bent toward patterns and there is something kind of beautiful about that. He sees the parts of people I’m trained to overlook and he pockets them like treasures. He drinks in the world with a fierceness that compels him to spin. He frames life with a rigid order and yes, sometimes that’s hard, but it breeds a certain kind of honesty, too.

Autism isn’t the worst thing that’s ever happened to our family. I wish somebody had written that on a blue puzzle piece when I was quietly worrying over page 151. I wish I’d known that the fear tied up in the a-word isn’t a good representation of what autism really is.

He hears his name now more than he used to, but when he doesn’t I get to graze his still baby soft cheek with my finger. I’m thankful for that.

The Forgotten Art of Flapping Hands

 
 Image: Val Dunham

Image: Val Dunham

Shortly after our son was diagnosed with autism, we threw ourselves into hours and hours of therapy. Some days that therapy seemed little more than a reminder of all the things he shouldn't be, and others it felt like a gift from on high, the only thing that might one day grant our son some form of bodily autonomy. His occupational therapist once told me "he won't always be four, and one day he might wish he could control his hands." She is right. Some days, though, his spinning looks like music and his flapping hands like a poem. On one such night, as the sun was setting by the sea, I took this picture and said a silent prayer of thanks for autism.

The Forgotten Art of Flapping Hands

Come morning I'll remember that you won't always be four.
I'll nod and wink to the boy you'll be at sixteen,
and struggle to make your beautiful, fluttering hands
still
like everybody else's.

Tomorrow, over coffee, I'll admit you are a bird
among a flock of flightless things
and I will strain against your wings until they're
still
and inanimate
like everybody else's.

But tonight, my starling boy, you are free--
untied to graze the red drenched sky,
a wobbling song I watch like a kite flyer,
bulky and flightless on the ground.

When my coffee grows cold and
your body still trembles I'll see sense,
but tonight, watching your silhouette
fold a shadowed kiss around a wanting sun I think
"Dear God, he is a poem
we are reading like a script."

 

Wanted: One Poetic Kumquat Tree

 
kumquat 3.jpg

I once took a college poetry class that turned out to be exactly how you envision a college poetry class. A young-ish professor with ironically cool glasses and good hair toted in a vintage trunk full of lamps every Tuesday and Thursday, and under that soft hipster glow we learned to write poetry. Kind of.

In this class was a purposefully quiet boy who listened to Bob Dylan and wrote a poem about kumquat trees. He was quirky—but, like, the kind of quirky that is intentional and understated and undeniably cool.

The work I produced was not that kind of quirky. It was off-kilter but not in the “my grandmother’s kumquat tree” kind of way. The first poem I submitted for critique was about waiting for a train.

Two of my peers—one an edgy red-head and the other a sassy blonde boy—theorized that the poem was a euphemism for suicide. It was not, but I intentionally fed that theory because I knew nobody with a poetic tree. That anyone was crafting theories about my train poem felt like the only momentum I had and I wasn’t going to let its absurdity slow me down.

Kitschy lamps and suicide theories aside, I’m not sure if a semester-long workshop made a poet of me, but it did illuminate something important: I’m not a traditionally great writer. The proficiency I’ve gained in this field has come in spite of a distinctly not cool quirky voice. This class illuminated a second thing, too, though: I have never written because I wanted to be a good writer.

A number of things compelled me to sneak into my parents’ office at six years old and staple together my first book—none of them had to do with becoming a good writer. I wanted desperately to scratch out the world as I saw it. I wanted to voice the questions I couldn’t phrase. I wanted to be heard. I wanted to use my parents’ stapler.

This is largely why I still write, and as a result my portfolio is fairly eclectic. I write young adult fantasy, science fiction, and contemporary fiction. I write poetry (poorly), short stories, and essays for Christian publications about things like school choice and sports. And yet, these genres don’t feel like opposite ends of a spectrum to me—maybe because I have always explored the world through stories. I found truth via fiction and fiction via truth, and that’s the thread that ties my writing together still.

The strange synergy between truth and fiction is what will guide this blog, and I invite you to follow along. This will be a space for essays, short stories, creative non-fiction, and bad poetry.

My first series, which I’ll launch on Saturday, will focus on autism awareness. Though most of April’s entries will have to do with autism in some way, this won’t be an autism blog.

I can’t forecast precisely how this thing will turn out because I have no idea, but I hope it will be worthwhile. And I can say with firm certainty that if I ever find that poetic kumquat tree, I will write an inspired free verse poem.