The “A” Word

Coming to terms with autism

By

EmailTwitterFacebookDiggStumbleUponGoogle+

While I was pregnant I hoped for a child who, once born, would leave me alone. Sure, we could stand up on stools and sift flour into a mixing bowl together, or run out into the yard to blow bubbles, and I definitely wanted to spend time with my nose buried in some baby hair, but for long stretches of motherhood I hoped to recline on the couch with a magazine, lulled into quietude by the sounds of my child playing at my feet, moving little plastic sheep in and out of a toy barn.

If I’d known God was listening and in a wish-granting mood, I would have asked instead to be Mariah Carey. Then I’d be up on stage right now, belting it out in a sequined halter dress, spending my free time scratching out lists of things I required backstage, like potted plants without any withered leaves. But I didn’t know God was listening, so I wished my child would be one of the easy ones, not at all prone to bothering his mother by repeating, over and over, “Watch me Mommy! Watch me!” I settled back in my chair, knitted my fingers over the mound of my belly, and said, to whoever was listening, “Wouldn’t that just drive you nuts? The kid always yanking on your pant legs? I want a kid who just sits there.”

God raised his finger.

My mother had given me her dog-eared, slightly mildewed copy of Pediatric Guidelines For Development during her visit to “help out” after Matthew’s birth, and fished the thin volume out of her purse importantly before pressing it into my hand. “Make sure he follows the chart,” she said, as if I — standing there warily regarding the wailing baby nestled in the crook of my arm, both flaps of my nursing bra flapped open — could “make” a baby do anything. She looked from Matthew’s red face to my terrified one and seemed to come to the same conclusion. Then she bobbed at the knees to put the book on the coffee table, giving it a good pat. “Shall I go to the store for more pacifiers?” she asked, lunging for her coat.

As Matthew got older, he cried less. One day, it was quiet enough for me to remember the book. Or maybe I was gathering a stack of dishes to take into the kitchen and I uncovered it. Either way, we flipped open to one of the charts, and then looked over at Matthew, lying on his back on a blanket on the floor. He was chewing on a rubber cat toy, gazing up at the ceiling. I ran my finger down the list of “developmental milestones” and then said, a little loudly, “he should be sitting up by now.” I got down on my knees by his side and looked down at him. He didn’t look back.

Matthew was not good at sitting. If we propped him up, he flopped back down again. He didn’t roll over. He never crawled, and long after he was two years old, he didn’t talk. Not that he was quiet. The word specialists used, scribbling it down on their clipboards and tossing it out to us as we all watched Matthew lying on his back, is “jargon.” I would hear this word used over and over for years to describe his odd noises, which to a mom only means “We don’t know what he’s saying either.”

Forget relaxing on the couch. Every minute Matthew was awake we needed to be on our feet, encouraging him to dance the hula. Or we needed to be down on our knees, pretending to be cows eating buttercups and mooing. If putting a feather up your nose and then sneezing it out made him catch your eye for a second — a glimmer of shared amusement captured for a split second — you did it again. Until you just couldn’t take it anymore. And then you put on an Elmo video to keep his attention in place for a moment and slouched onto the floor against the dishwasher and drank a little wine, furtively, and didn’t tell anybody.

The first hurdle was this: Friend’s children, younger than Matthew, would come up to me and say things like, “Hey, look at that butterfly,” and I would lower myself to one knee, a smile cracking across my face while my own child repeated “Ba,” again, to the wall. My heart would rip along its seams. But here’s the secret back door on that one: There will always be another kid worse off than mine. And although no one says this out-loud, that helps. My kid hasn’t — at least not yet — smeared poo on the walls. He doesn’t have a seizure disorder so extreme that he cannot leave his pitch black bedroom. And how does this make me feel? Lucky. Lucky like I just found a diamond.

I have this luck with me, a little bird on my shoulder, when I see other moms watching Matthew run across the playground, his hands flapping around him. I feel the little toenails of that bird dig into my shoulder when the mom casts the inevitable look: Oh, you dear, dear woman… her mouth turned down into a little pout, as if they have just observed me experiencing a great disappointment. Too bad. I take in a breath. Then the little bird shifts its weight around, and I remember my luck. Not just that I have escaped worse, but that I have this: This beautiful boy. I beam a smile in return.

I do have one friend who gets my luck. “You get free summer school?” she says, clearly pissed that a bus arrives every morning and collects Matthew, taking him away for four straight hours, all at zero cost to us. Her kid is the same age as mine, a busy little girl who’ll be spending the summer following her mother around all day, asking again and again if its time to braid her dolly’s hair.

“Yes,” I say. “If your kid had autism she could go too.”

In Matthew’s summer school class, there is a girl who licks the walls, a boy who bites, and a girl who spends hours pouring sand back and forth between two cups.

I sneak up to the classroom window sometimes and watch Matthew, fitting my eye between two construction paper cutouts of apple trees taped to the glass, and follow the movement of the ball he rolls, again and again, into the baseboard. When a child strapped into a nearby wheelchair shrieks, he does not look up. I hunch my way back down the hall, back to my car. I realize I cannot feel anything. That my whole heart, my whole being, is lodged inside the movement of that tiny arm holding the ball. I don’t care about anything else, and it will take me years to see how this is even the tiniest bit problematic.

And how does this make me feel? Lucky. Lucky like I just found a diamond.

But there are clear benefits to this after-autism me. I’m not such a tight-ass. I don’t give a good god damn if you mush your noodles into the weave of the carpet or pee on me. When another mom stresses out because her baby is missing his sock — his bare foot exposed sunblock-free for the whole length of the park! — I reach a nirvana-like state of peace that was utterly closed-off to me before. Not yoga, not pot, not deep-breathing or bath salts can make you shrug off the little details like a special-needs child. I want to turn to her, tickle her baby’s foot, and say, “I wonder what will happen if my son wanders away from his group home after I’m dead. Will they go find him and bring him back? Or will he end up under an underpass?” I want to say, “If only I could live forever so that I could keep him safe! But oh well! Let’s go search for that sock.” But I don’t say this. Instead, I make a concerned face and peer under a bush. It’s not her fault that she is in her world and I am in mine.

Now that I know God is listening, I keep Him in the loop more. “Don’t be so literal,” I say. “Of course I wanted a child who says, ‘Watch me!’ Did you really think I wanted to be left alone? Don’t you remember all the fertility treatments? The begging? So now, when I say that I hope Matthew lives with me forever, I hope you can read between the lines. I do not mean that I want a 30-year-old man coming into my bedroom in the middle of the night trailing his wet sheets. I mean that I love my child. And thank you.”

In our house we say “The ‘A’ Word.” It’s not because we’re ashamed of his diagnosis. It’s because we have no idea what autism really means. If you have pink eye it means you got shit in your eye, and a doctor can tell you exactly how to fix it. They have a little bottle of medicine for this, and they’ll write out a prescription for you to take home. They don’t shrug and say, “Who knows? Maybe your eye will fall out. Maybe it will shrivel up and turn inward. Or…maybe you will be able to see further than anyone ever has before!” No. They have pink eye down.

Autism, not so much. When we got the diagnosis we were at the height of our confusion. Does this mean Matthew can count toothpicks? Go get the box from the kitchen! Will bumping his arm, even the tiniest bit, make him scream? Will he hear a woodpecker on a tree branch fifteen miles away and begin to rock back and forth, holding his ears? Will he bang his head on the wall? Will he speak forever in a robot voice, if he ever talks at all?

“Quite possibly,” the people holding the clip boards said. “We will have to wait and see.” And then they swiveled their chairs back to their desks and went back to their lives, and we slipped down from the couch onto the floor and began to stuff feathers up our noses.

We are somewhat less confused now. Not about the future — that is still a large unknown — but the present makes sense. Matthew hugs back. When he talks we understand him. He does not start screaming in noisy places. But he is also very stubborn. He told me that he will “never ever use the potty, not ever, ever,” and I’m wondering if I should start to believe him. I recently read about a chatroom for autistic adults, and how some of them, while typing up fully-formed and intelligible sentences, are not “toilet ready.” This troubles me.

But what I know for sure is that there is a place for this child in our family. He can walk with his arms swinging any way he wants. He doesn’t always have to make sense. And he can jump on the furniture. When I hear his headboard crashing into the wall I come to stand in the doorway and say, “Go! Go! Go! Jump higher!” I stand there with dishwater running down my arms and delight in the miracle of this jumping. And sometimes, he turns around to smile at me, looking me right in the eye. •

Photo by A. Shazley via Flickr (Creative Commons)

Aileen Jones-Monahan is a writer living in Western Massachusetts. Her mother cut the cord off the television when she was a kid, so she spent a lot of time reading and fashioning “helpful” inventions from junk drawer tidbits. She enjoys these activities to this day. After the birth of her sons, she added napping and eating in bed with the door closed. Her essay “Cigarette Ash in the Frying Pan” was published in the last issue of Hip Mama, and she has work forthcoming in Green Prints and Curve. Keep up with her here.

EmailTwitterFacebookDiggStumbleUponGoogle+

More To Read...

  • Puppy ParenthoodPuppy Parenthood She was a 14-pound lab-hound mix rescued with her siblings from a cardboard box on the side of the road in Kentucky. She was lanky and floppy, with big paws and ears she’d eventually grow […]
  • Must Love KidsMust Love Kids “Out of sync with their time, yet deeply, longingly feminine, neither knew how to be a woman.” I have been fussing over this sentence from Susan Hertog’s biography of two remarkable […]
  • Shifting Expectations in SayulitaShifting Expectations in Sayulita A pro-surfer friend described Sayulita as a kid-friendly artist hamlet where you can surf in warm water year round, gorge on heaping plates of Mexico’s best fish tacos for two bucks, and […]

Comments

Leave a Reply

Your email address will not be published.