Autism and its effects on a Chicago family in Robert Hughes's Running with Walker.
Running With Walker:
a book about a boy, a family and autism
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Christmas Party, 1997 "Ooooo, baby! It's a big old goofy world!" The words hit my ears like an air raid siren. I flinch, duck, and look up, but too late. A Hot Wheels fire engine—a metal toy truck about three inches long—comes flying over the balcony above my head, hits the wall, ricochets off a supporting beam and bang! lands on the stove, right next to the mulled cider I'm stirring for the Christmas party. I dash out of the kitchen and up the stairs, three at a time, to the balcony bedroom and launchpad that overlooks our kitchen. Walker, my 12 year-old autistic son, is in the corner of the room bouncing wildly on a large inflated therapy ball, another Hot Wheels fire truck in his hand. He is still shouting the same line from a John Prine song even though to his right a tape player is blaring "Jingle Bell Rock" and to his left the video of "The Muppet Christmas Carol" is playing on a television set. His 10 year-old brother, Davy, oblivious to the racket, is perched on a high stool only a couple of feet away and coolly playing a video game on yet another TV set. Taking my stand in the middle of all this fun technology, I shout, "What are you doing? You've got to settle down and relax!" I model the concept "relax" by frantically waving a wooden spoon in the air. "The guests are coming any minute now!" "Ooooo, Baby! " he yells again, looking very pleased. "Say you're sorry for throwing the truck, Walker. Say you won't do it again." "Take it easy, Dad," offers Davy without taking his eyes off his game. "He's just excited." Walker smiles and says, "Sorry, Dad." I force a near grin, give him a hug, take a deep breath, and make an effort to de-escalate my rising tension. Walker looks terrific. A snapshot of him right now would show a tall, gorgeous, dark-eyed boy with glossy hair and a killer smile. Trim, square-shouldered, with graceful posture and a certain indefinable air of elegance, he seems like one of life's natural winners. In his turtleneck black shirt and jeans, he's like a child model in a Gap ad. A videotape of him, however, would reveal a very different boy. He sits and bounces on his giant inflated ball a little too high and too tirelessly. He shouts words and phrases unconnected to the two things he's doing simultaneously—watching a video and listening to music. At unpredictable moments, he leaps up and rewinds parts of both his videotape and his audio tape. Much more rarely, he sends a little Hot Wheels missile into the air and gets some entertaining response from his father. He sometimes spits, loudly and vigorously and inelegantly, into a plastic bucket placed nearby. And he reacts to certain scenes in the video or lines in the songs or things Davy says by putting his fingers in his ears, blushing, curling up and staring at the floor. As I walk down the stairs, I hear another "Ooooo, Baby!" and stop. This time no follow-up smart bomb comes zinging by my head, so I keep walking. I have good reason to worry. A half-hour ago I gave Walker one milligram of Risperdal, a strong mood-controlling drug, just to help him remain calm enough to get through the party without some small cataclysm. But once again his astonishing energy seems to be powering right through any effect of the medication. Ellen, Davy, and I know that Walker has it in him to stop the party dead. He could, if he loses control, start a virtual blitzkrieg—of Hot Wheels cars, audio tapes, videotapes, empty Coke cans, blankets, silverware, shoes, fistfuls of spaghetti—raining down on the guests from over the balcony into the living room and kitchen. These objects would be selected with cost and safety concerns in mind—for instance, he has never actually hurt anyone with a flying object, has never broken a window or thrown a TV or a table over the side—but his attention to safety is unlikely to be appreciated by every single guest. And stopping the party wouldn't require anything so flamboyant. Walker could simply start yelling an impossible request like "Waa waa school bus now!" (that is, "I want to ride in the school bus right now!") incessantly enough and loudly enough until self-consciousness drives everybody out of the house. Most importantly, I, Dad, the nervous member of the family, would be fatally embarrassed. About sixty people are coming, and this party is only the second time since Walker's birth that we've tried to put on a event of this magnitude and exposed our little household on this scale. It's true that nearly all of those invited know something about Walker and probably expect to see some weird antics. But few know about the extremes to which Walker can go, the physicality and rage and frustration he can exhibit when he feels too lost and hopeless. What I try to avoid thinking about is that Walker himself would feel crushed if he loses his fragile grip on his emotions. He adores Christmas, plays Christmas carols on his tape player year round, looks radiant at the mere mention of the tree, and snow, and Santa Claus. He has looked forward to this party for weeks, but he knows better than anybody that the excitement might be too much for him. For Davy, the main architect and planner of the event, a Walker party stoppage would be utter humiliation. The first thing they would notice is that there is absolutely nowhere to park. Our house is in a north side Chicago neighborhood that is so hip, so jammed with restaurants and live theater and shops and Jeep Wranglers and SUVs that a parking space is a small news event. A common remark spoken by someone who walks in our door, a remark made in a barely-disguised accusatory tone of voice is, "Wow! Heh, heh! I had to circle this block for twenty-five minutes!" I imagine this unsuspecting couple having to park two blocks away on Belmont Avenue and walking in a state of alarm past a jarring variety of commercial establishments: a Starbuck's, a cigar shop, a Dunkin' Donut, a sexual appliance emporium, a tattoo parlor, a transient hotel, a popular Swedish restaurant, an upscale women's clothing shop, and a store that specializes in large plaster gargoyles. They'd also pass a stunning range of city sidewalk types: from the evidently well-off to the obviously poor; from the spiky-haired, leather-jacketed, multiply body-pierced young person to the very stationary, very scary-looking guy. This poor man's Greenwich Village aspect of our neighborhood has been a quiet boon to us: Walker's startlingly odd outdoor behavior hardly rates a second look. I try to convince myself, as I stand looking out the window, that this couple would be mollified and impressed when they finally get to our small house, a two-flat, lit up as it is by bright Christmas lights. After walking up the stairs and in the door, they would step into the cozy living room of a recognizably normal family. There's a fireplace on the right with a wood fire burning more or less successfully. There's a nicely-decked-out table with wine, a smoked ham, cookies, and home-baked bread on the left. And straight ahead there's a 9-foot Christmas tree, decorated within an inch of its life, that reaches up towards the high arched ceiling. The room is small, much too small for 60 guests, but I flatter myself that it's also pleasant and warm and seems like it was made for a Christmas party. But doubts creep in. The walls, for instance. What if this couple takes a good look at them? Certain key spots—the banister along the stairs, the walls in three corners of the house and along the hallway, the ceiling near the back door, the whole area around the computer in the back room—have been permanently penetrated by Diet Coke, peanut butter, Kraft Spirals, pizza sauce, and other indelible delicacies. Walker is always touching the surfaces around him, either jumping in place at one of his stations, like in a corner, or dashing along a route, like the hallway and up the stairs. Keeping up with him would require fleet-footed, round-the-clock, obsessed janitorial personnel. What if this couple silently catches on to our apparently loony financial priorities? The kitchen cabinets are missing two doors and the stairs up to the parents' bedroom are bare pine boards, but we have a startling array of electronic toys and an overwhelming library of kid videotapes. The ceiling of the back porch room is spotted by big water marks and loose plaster from a perpetually leaky roof, but it looms directly over an up-to-date computer, modem, scanner and printer. The screens on most of the windows are ripped, but there are stacks of expensive books hidden in all sorts of places. Certain tables and chairs will collapse if pushed at the wrong angle, but somehow we manage to afford a big supply of firewood. And there are strange little indentations, actually the five-year-old Walker's tiny teeth marks, studding the edges of tables and the banister and the corners of walls.I want to, but won't, make an announcement in the middle of the party: "Attention! Attention, please! I know what you're thinking! But it is not financially sensible to replace things that a.) you can't afford to replace, and that b.) are only likely to be damaged again. Really! Thank you! Enjoy!"S ocial self-consciousness is a stalker I seldom shake off. Ellen, much better at evading the feeling, comes into the room and offers me a glass of wine. "I know what you're doing," she says. "You're looking at the walls again. Take it easy. What's the worst that can happen?" I smile at her little joke. We both know what can happen. Two hours later, to my surprise, all seems to be going well. Ellen is mixing, Bing Crosby is singing on the stereo, people are bumping elbows pleasantly; and I, working on my third glass of wine, am reasonably calm but wary as I chat with my friend and colleague, George, in the kitchen. George and I teach English as a second language and freshman composition at the same City College in Chicago, and both of us went to graduate school in literature at Northwestern. This means that there are great piles of information in our skulls that we never have an excuse to show off except in conversations like this. I am about to stun George with a tidbit from my stash of useless knowledge when I hear an ominous shout overhead: "SPA-GHET-TI !" This is not good. I brought a big bowl of spaghetti up to Walker about twenty minutes ago and have no more of it prepared, so I excuse myself and bound up the stairs to see what I can do. Walker gets up from bouncing on his ball and looks at the TV screen. "I like that movie a lot. Do you like it?" Walker smiles broadly and looks into the eyes of his visitor from just a few inches away. "Yeah, it's great, and really funny. That Ratso sure is silly. But poor Mr. Scrooge!" Walker looks at the screen and puts his fingers in his ears. "He's really having a bad night, isn't he? Hey, there's the Ghost of Christmas Past. She's pretty, like a little fairy, isn't she?" Walker, still smiling, sits down on the ball, fingers in ears, and stares at the floor. "Conversing" like this can be hard work, but right now Walker's friend, Valerie, a skilled practitioner, is whispering something to him and trying to calm him down. As he sits quietly on his ball, she is on her knees next to him with her arm around his neck, both their heads bowed. Valerie is a cashier at the vast supermarket where Walker and I do most of the family's grocery shopping, and she has not only seen Walker in action but helped to hustle us quickly through the line during some of his wilder outbursts. Valerie looks up at me, smiles, and says, "I think he wants more spaghetti. I could be wrong, though." Walker has never actually held a "conversation," in the sense of a prolonged exchange, with anyone. As a "low-functioning autistic" (though this and other labels have proved to be of very little help in understanding him), he has extremely poor verbal skills. He speaks to others mainly in single words and phrases, many of which can't be understood. To our delight, however, he increasingly shouts long, incomprehensible sentences. We take this as a good sign. Autism is widely assumed to be an ineradicable disability, but Ellen and I, in our own shaky but resolute way, have never accepted this. As I start to boil his spaghetti noodles, I listen for another shouted entree request from above and wonder if he can make it all the way through the party without escalating further. Christmas party nerves call up my own personal Ghost of Christmas Past. Two years ago, on Christmas Eve, the four of us plus Ellen's mother, Phyllis, folded ourselves into our Escort and drove for an hour and a half out to the suburbs to my sister's annual party. Walker skipped happily up the driveway, ran in the door, yelled "Merry Christmas!", couldn't think of anything else to do, and after about a half hour went to the front door and started jumping up and down, screaming "GO HOOOM!" over and over. Going home was not an option: Davy would be crushed to have to turn around and leave, for he seldom had an opportunity to see his cousins and aunts and uncles. And Phyllis had only met my family once before at our wedding. After about twenty minutes of nearly everyone trying to distract him and help him, I took him out to our car in the driveway. The two of us sat in the front seat, and I tried to entertain him with Coke and crackers and the radio. A station was playing one of Lionel Barrymore's 1940's performances as Scrooge, and I pressed a one-way discussion of it on him. Walker would have none of it. He kicked the dashboard, grabbed me by the collar of my coat, tried to bite me, and shouted "Go home!" over and over. So a grim routine began. I'd sit in the car and try to talk to him until I started yelling too. Then I'd step out of the car, close the door, and pace around in the snow. He'd look at me through the windshield, tears in eyes, shouting "Hoooome!" Then I'd wallow in self-pity for a while until I re-discovered enough mature parenting brain cells to talk to him calmly again. After a while Ellen would come out and spell me, and I would go in and pretend to celebrate. Though we knew Walker wanted to be there and was thrilled to see his family, he was too sad or frustrated, too angry or strangely panicked to handle it. The stress of moments such as this is never equal to the sum of the inconvenience and embarrassment of the situation. Anxiety—the grim companion, the Ghost of Christmas Yet to Come—always dominates moments of trouble, as if saying to Ellen and me, "Fools! You think this is bad? Just imagine the future!" Other Christmases, by contrast, had been idyllic. Once, at age five, Walker choreographed an elaborate, inventive little dance to a recording of Nat King Cole Christmas songs and performed it for our friends, Mary and Joe, and their daughters, Kathleen and Jane. The girls—looking and sounding like visiting angels—sang "Sisters" from "White Christmas." Everybody, Walker especially, seemed to inhale comfort and joy on a grand scale. Ever since then, Walker has shown an interest in performing at Christmas time, and this year we've practiced "Winter Wonderland." When the timing seems right (when is it ever right?) he and I will sing it together. Kathleen and Jane, now gorgeous 18 and 20 year-olds, are here, and Walker would like nothing better than to sing it for them. I suddenly hear another ear-piercing crescendo from over my head: "Aaaah, aaah, AAAAH! ", but I don't know what the trouble is. So I call the boiling spaghetti noodles done and hurry them up to him. Walker is always driven to communicate in one way or another. Shouting, crying, leaping thunderously up and down in one spot, or pitching audio tapes over the side from his upstairs corner—all of it is communication. Sometimes Walker seems like a kidnap victim in a bad movie: He's locked in an attic and tied to a chair with duct tape over his mouth. He can hear the police—Ellen and me and our cohort of doctors, therapists, and teachers—downstairs looking for him, so he knocks over the chair, kicks over a lamp, and thumps with his feet on the floor. Unfortunately, the police are well-meaning but dim, earnest but clueless. The victim is close, very close, but the police continually misidentify the signs he's trying to give them. Guests are beginning to leave, so it's now or never for the boys' performances. First Davy sings a song of his own composition, "The Six Relatives of Christmas," sung to the tune of "The Twelve Days of Christmas." It's genuinely hilarious and darkly comic, the kind of song Bart Simpson would write if he had Davy's gift for parody. The guests stand in a circle around him, laughing and especially enjoying his post-song show stopper, standing on his head for three minutes. Then Walker and I come down from upstairs, I holding his left hand while he ducks his head, blushes, and holds his right index finger in his ear. I tug him over to the circle Davy created and we stand side by side and do a pretty good job with "Winter Wonderland." My Andy Williams-style outstretched arms finale, I think, more than makes up for the fact that I forget the lines and mix up the verses slightly. The beaming presence of Kathleen and Jane and the hearty applause make Walker glow with pleasure and he dashes back up the stairs. I breathe a sigh of relief. The party has been our family's version of total success. Later, after the guests have gone, the boys are in their beds in the bedroom they share. Ellen has gotten them into their pajamas and tucked them in and I go in to say goodnight. Davy is sitting up reading a collection of "Calvin and Hobbes" comic strips. He finds Calvin soothing to read about, for he knows Calvin is a little like him: a lonely, sweet, misunderstood boy with an active imagination and striking intelligence. Davy has about a dozen stuffed animals tucked in around him, his favorite cat, Louis, asleep on his feet, and a stack of books next to his bed (among them, Edith Hamilton's "Mythology" and a couple of volumes of the encyclopedia). I kiss him goodnight and go over and sit on Walker's bed. We had such a great success singing earlier in the evening, I think we could sing another song together. So I begin: "The first Noel, the angel did . . . ." I hold out my open palm toward him to complete the line. "No say today!" he shouts. I press on: "Was to certain poor shepherds in fields as they . . . ." "No lay today!" He then grins broadly, sits bolt upright, and a wild, let's-get-crazy look comes into his eyes. "OK, Walker. It's time to settle down. Good night, man." I smile, give him a hug, kiss him, pat Davy on the head, and turn off the light, all in as matter-of-fact a way as I can muster. After I close the door, I hear: "Ooooo, baby! It's a big old goofy world!" I pause in the hall for a minute, but the Walker War Cry signifies nothing more this time than a token jerking of my chain. Ellen is upstairs getting ready for a short winter's nap in the technology playroom that doubles only incidentally as our bedroom. I close the fireplace doors, turn off the porch lights, and take one last look at the Christmas tree before turning it off too. Ellen and Davy put all the lights and ornaments on it, and they did a great job. There is the big globe ornament with hundreds of gold pins in it, meticulously made by Kathleen and Jane when they were little girls. There is my favorite one, a kind of anti-ornament, a gas station lit up by a light and covered in snow that loudly advertises Coca-Cola, given to me by a friend who knows about my over-fondness for the stuff. Another one, a wooden reindeer that dances when you pull a string, was given to us by a neighbor. And I spot one of several "Baby's First Christmas, 1985" ornaments that friends gave us in honor of Walker, who had just been born on December 2 of that year. As I look this one over—a tiny blue cradle made of popsicle sticks—it occurs to me how little our friends know about us. Who among our guests here tonight could ever guess how difficult and risky our modest Christmas production has been? Our impression of a near-normal family this evening—with our smiles and our jokes and our shabby-but-cute Potemkin village décor—was so good, in my opinion, that our guests probably went away thinking, Well, that was a nice party. Walker’s an attractive and charming boy. What’s all the fuss about? I would like to explain what the fuss is all about, to tell Walker’s story in such a way that others can understand my fumbling replies—“Pretty good” or “Not so good” or “A little better”—to the daily question “How are things going?” I would like to tell the story so that people who have no acquaintance with autism can understand us better—and perhaps other families like ours as well—when we try to describe why we still hold out hope with so little solid evidence to go on. Most important of all, I would like to tell Walker’s story so that others can know him, and other children like him, as much, much more than the strange kid shouting and bouncing on a ball in the corner with his fingers in his ears; as much, much more than a victim whose every move and every thought is determined by something called autism. To do this I have to go back to the time when we discovered that our perfect little boy had a problem, and when we had no inkling of the trouble the big old goofy world held in store for him…. |
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Autism and its effects on a Chicago family in Robert Hughes's Running with Walker.