How to Be a Sister

by Eileen Garvin

  Table of Contents

  Praise

  Title Page

  Dedication

  Chapter 1. - family-style dining

  Chapter 2. - lunch date

  Chapter 3. - let her eat cake

  Chapter 4. - winging it

  Chapter 5. - what autism is

  Chapter 6. - the sheep is between the table and the hamburger

  Chapter 7. - friends and neighbors

  Chapter 8. - the know-nothing aunt

  Chapter 9. - what’s next, margaret?

  Chapter 10. - life is a bowl of spaghetti

  Chapter 11. - how to be a sister

  resources

  Acknowledgements

  about the author

  Copyright Page

  PRAISE FOR

  how to be a sister

  “A MARVELOUS, HARROWING, life-affirming book. In looking to forge a meaningful relationship with her severely autistic sister, Eileen Garvin finds a simpler way of being in, and extending, every moment. Isn’t that what we’re all after? I loved this book. And boy, can she write!”

  —ABIGAIL THOMAS, AUTHOR OF A Three Dog Life: A Memoir

  “AUTISTICKIDSGROW up to be autistic adults. They have brothers and sisters who grow up alongside them. This book is an unforgettable, courageous, and explicit sibling’s eye view into a rarely explored relationship, where the bond wrought by love and joy, crisis and heartbreak is mesmerizing.”

  —MARY-ANN TIRONE SMITH, AUTHOR OF Girls of Tender Age: A Memoir

  “ALTHOUGH EILEEN GARVIN was the younger sister, she was expected to be responsible for Margaret. Now, as an adult, Eileen struggles to understand her unpredictable and effusive sister, and finds that no matter how much confusion and inner conflict she feels, she always returns to love. A poignant, thoughtful, and honest portrayal of life with a sibling who has autism.”

  —RACHEL SIMON, AUTHOR OF Riding the Bus with My Sister and Building a Home with My Husband

  “HOW TO BE A SISTER, told with amazing insight and compassion, is rich in the hilarious detail of coping with a beloved family member with special needs. Read this book. It will enrich your life.”

  —TERRELL HARRIS DOUGAN, AUTHOR OF That Went Well: Adventures in Caring for My Sister

  “EILEEN GARVIN’S PORTRAITS of her sister Margaret in chaotic action bring a rich identity into focus, an identity that includes autism—but also a wild and playful tug-of-war with the world that more truly defines Margaret. Bravo to Eileen for seeing and for enabling the rest of us to witness her sister’s creativity, purpose, and profoundly independent path.”

  —JUDY KARASIK, COAUTHOR OF The Ride Together: A Brother and Sister’s Memoir of Autism in the Family

  “EILEEN GARVIN HAS written a deeply reflective, generous book about her relationship with her older sister, Margaret, who has autism. A compelling description of how Garvin’s childhood experiences continued to influence her interactions with her sister many years later, it gracefully intertwines humor, pain, respect, and optimism. Eileen Garvin is open about her struggles, her love, her anger, her guilt, her fear, and her respect for her sister—as a child and as a woman. Every parent who is raising both a child with autism and a neurotypical child should read this book. So should every older teen or adult sibling of a person with autism. And so should all the rest of us who want to gain a greater empathy for the life of a family which includes a child with autism.”

  —SANDRA L. HARRIS, PHD, EXECUTIVE DIRECTOR, DOUGLASS DEVELOPMENTAL DISABILITIES CENTER, RUTGERS UNIVERSITY, AND COAUTHOR OF Siblings of Children with Autism: A Guide for Families

  For Brendan

  1.

  family-style dining

  Children should be taught to speak quietly, and to use their best manners so that this experience is as pleasurable for other restaurant patrons as it is for your family.

  —On Dining Out, EMILY POST’S ETIQUETTE

  THROUGHOUT THE COURSE of my life, I’ve only been certain of two things: I am the youngest of five children, and I am my sister Margaret’s older sister. Even though she was born three years earlier than I, I was the caretaker, the dependable one, and, as far as I can see, always will be. Instead of growing up in the protective shadow of my big sister, I often found myself dodging things she was throwing at me or chasing that shadow through a crowd of people as my big sister took off on some crazy escapade.

  Margaret and I did not choose this role reversal. You could say that her autism assigned it to us. For as long as I can remember, I was often in charge of Margaret, who could never be left alone, and so it fell to me to be the responsible party during the frequent social calamities caused by her trespasses during our childhood: her mirthful and public nudity that I struggled to cover; her loud and clear laughter during moments of silence that I tried to hush; or, worse yet, the times that her anxiety and fear turned to uncontrollable screaming that I was powerless to quell.

  The passage of time didn’t seem to help, and I felt that sense of powerlessness return to me in our adult years. I felt its icy grip one particular June morning as I sat behind the wheel of my mother’s car out in front of my sister’s house in Spokane, Washington. My mother had lent me the car so that I could take Margaret out to lunch. Lunch. A lunch date. My sister and I are going out to lunch. I’m in town visiting, and we are going to grab some lunch. Catch up. In the vocabulary of regular people, this sounded so reasonable, so normal. But where I came from, this was unknown territory that could sooner resemble a riot than two women in their thirties enjoying a midday meal together.

  I sat in the car, clutching the wheel, trying to gather my thoughts. I simply didn’t know what to expect. I’d been in town for several days and was just now getting over to see Margaret. Even though I had come home expressly to meet with her, I had no idea how this get-together would go and if it would make one or both of us miserable, so I hadn’t exactly rushed over to see her. I didn’t even know if my sister would get in the car with me, to be perfectly frank, because she is a woman who loves her routine, and this was definitely something new—having me show up at her house in our mother’s car and asking her to go somewhere with me alone.

  DURING THE PAST few years, my visits home had grown brief and violent. Violent. Now that’s a word you don’t like to hear in relation to family togetherness, but it’s the only word that begins to tell the truth. When we gathered at our lakeside cabin, my sister would become, at some point in the weekend, out of control. She would scream, bang the table with her fists, and throw things. She might be set off by some minor disruption—a lost CD, a missing trinket, some undetectable change in the environment. Trying to help my sister in her panic has always felt like coming to the aid of a person whose language I don’t speak. She simply cannot put into words the terrible crisis she is in, and I have no way to decipher her need, no matter how dire.

  After a while I began to suspect that she wasn’t freaking out about any lost item. I started to think she was freaking out because she’d left the safe and careful routine of her group home to be with the rest of us. She was seeing all of us, who had been absent for most of the year, quite suddenly in the same place. It was crowded, noisy, and chaotic, and it pissed her off and stressed her out. That was my theory.

  Whatever the case, Margaret would get upset, and then my father would blow his top. And my mother would let him. Then the rest of us would feel responsible and angry and helpless. The world exploded, and no one ever talked about it. Then all that pain and sadness had nowhere to go. I would climb back on the plane to my home in New Mexico with a headache that lasted for days. I would think about my sister and wonder if it would be better not to see her at all. I would think about the rest of my family and wonder how we could survive this decades
-old cycle of destruction.

  AS I SAT outside Margaret’s house in my mother’s car, I knew what might happen even if I didn’t know what to expect. The possibilities ran rampant in my mind. Dining out with my sister had always been an exceptionally dynamic experience. To begin with, when we were children, eating out was a rare occasion. My parents were always trying to save a buck so that they could put us all through Catholic high school and then college, thereby getting us the hell out of the house. Our infrequent dining out was motivated by mental health issues, too—namely, that taking their five children out in public made my parents want to kill themselves just a little less than they wanted to murder the rest of us.

  And to make the understatement of the millennium, I’ll say that my sister wasn’t at her best in restaurants. Noisy, crowded, unfamiliar places stressed her out. Restaurant dining took her out of her rigid, comforting routine and also away from the short menu of foods she found palatable—spaghetti, macaroni and cheese, and spaghetti.

  There was also the matter of interminable waiting at restaurants: waiting to be seated, waiting for menus, waiting to order. Then she had to wait for the food to come, wait for everyone else to finish eating, wait for the check. This entire process was supremely different from Margaret’s preferred mode of dining, what we call the Six-and-a-Half-Minute Meal. Three hundred and ninety seconds is all the time it takes for Margaret to charge the table, fill and empty her plate, chug her drink, scramble into her coat while she is still swallowing, and stand by the door waiting to be driven home. “THANKS FOR THE SPAGHETTI, MOM!” she says in her high monotone voice, waving good-bye to the rest of us, who are still sitting at the table with our forks in the air.

  Leisurely dining was never a habit for Margaret, and during our childhood the anxiety she felt in a public dining room was more than palpable to the rest of us. It created a force field of nervous energy that electrified everybody as we waited for, well, everything to fall apart.

  With Margaret, not only did these events become greatly accelerated, but sometimes the distinct periods were jumbled out of order. My sister might order dessert in the lobby when the hostess came to tell us our table was almost ready. Or, after clamoring over and over again that she wanted spaghetti, PLEASE, she’d refuse to speak to the waiter who finally came to take our order. And she couldn’t tolerate the time lapse between the ordering part and the eating part of dining in a restaurant.

  It’s not that she was particularly ravenous, either, as she fretted, waiting for the food to appear. She just wanted to get on with things. Her autism didn’t let her appreciate the white space, the pause, the invisible transitions between action and rest in everyday activity. So if she wasn’t Ordering, by God, she should be Eating. And if she was done Eating, it was time to Go Home. As a result, every moment of such an evening—from the second we climbed into our twelve-passenger Chevy van and clicked into our seat belts until we were safely back at the house—was well seasoned with family-wide anxiety. The rest of us might have wanted to enjoy everything—or anything—that happened in between, but for Margaret the best part of the evening was getting back to the house. The rest of it, on Margaret’s terms, was simply a period to be suffered through. And so we all suffered together, as families do.

  My other siblings and I pondered the ominous, eternal question, “When will she lose it?” We never thought “why” or “if.” We knew from experience that the question was “when.” So we ate fast. We ate to a silent but thunderous cadence: “Can-we-get-through-this-before-Margaret-throws-a-fork-and-Dad-makes-us-leave?” Margaret often came unglued right in the middle of dinner, and it was usually my mother who would extract her from the table. (I’ve often thought this is why my mother never got fat like other moms; she often didn’t get to finish her dinner. She certainly never made it to dessert.) Margaret would get booted for throwing food or silverware or for yelling. Then she’d make a grand exit, sometimes laughing and sometimes kicking and screaming. Or maybe singing. Sometimes she’d even manage to be kicking and screaming while singing and laughing all at the same time. It wasn’t all bad; if every head in the restaurant was still turned toward the door my sister had just been dragged through, nobody noticed if I was quietly digging into my spumoni ice cream, which I wasn’t supposed to eat because I hadn’t finished my dinner. And we never had to wait long for the check, either.

  I learned what regular dining was like when I worked in restaurants as a teenager: the process of entering a restaurant, being seated, ordering, and eating was accompanied by quiet conversation and laughter. I observed that this series of events could take anywhere from one to two hours, and that people often seemed relaxed during the entire course of things. It was a joyful experience, a series of pleasant events linked together with harmonious transitions involving small talk, sugar, and salt.

  As we grew up, Margaret’s tolerance for public dining improved, but she remained predictably unpredictable. And while we might enjoy the kind of amnesia that comes with time and distance, momentarily forgetting how things used to be, it never took a full minute for us to remember just how bad things could get—like the evening my parents took us to a little German café when we were all in our twenties. There were hardly any other diners there that night, and I’d like to think that’s why the place ended up closing down, not because of what happened while we were there.

  We sat at a long table along one wall, enjoying the atmosphere, chatting and catching up like a normal family. The boys and I had been away at college, and Margaret was living in a group home near my parents’ house. We talked and laughed, none of us realizing that Margaret was simmering away at a low boil. Normally she’d clue us into her mood with a minor episode before anything terrible happened. She’d get irritable and maybe stomp her feet or throw something before we left the house, just to let us know she was feeling impatient. This time, however, we were not so lucky. We weren’t prepared when she erupted, throwing her linen napkin high in the air and emitting a mind-blowing screech, the kind that should have shattered the crystal. It only lasted for a second, but it seemed to stop time altogether.

  I’d been telling some story, and the sound of Margaret’s scream just knocked the breath out of me. I felt a slick layer of sweat spring to the surface of my entire body—my scalp, my face, my palms, even the soles of my feet. Across the table the stunned faces of my brothers hung suspended above the tablecloth. At that exact moment a nicely dressed, middle-aged woman had the great misfortune to pass our table. She clutched the back of a chair with one hand. The other hand went to her heart. She gave a little cry and her legs started to buckle. The owner of the restaurant hurried over and helped her back to her own table.

  Then life started up again. My brothers and parents and I all breathed in and laughed a little hysterically, happy that we all hadn’t, in fact, just been run over by a train or vaporized in a nuclear holocaust, although that’s what it had felt like for a second or two. It was just business as usual. My mother patted my sister’s hand and told her it was okay. Margaret, looking shaky, took a big drink of water and said, “Okay. That’s good manners, Mom.”

  Nobody knew what had set her off, just as none of us knew what had calmed her down. All we knew was that we didn’t and couldn’t know, but we still felt like we should know so that we could keep it from happening in the first place. My brother Larry can still duplicate the noise she made that night, and although I beg him not to, he’ll do it every now and then. And then we all laugh and cringe, and I feel like I might cry or throw up, then we laugh some more.

  WHEN WE WERE growing up in Spokane, having a relationship with Margaret often felt like living the Bill Murray movie Groundhog Day, but without the resolution. The same kinds of things happened over and over again, and we never seemed to get anywhere. These were the questions that weighed heavily on me when I thought about spending time with my sister: What will she do? How will it make me feel? How will it make her feel? We were family, because we were born to the same pare
nts. We were closer to each other genetically than to any other people, but what did that mean, exactly? What was she to me, this person who didn’t really have much to say, who seemed to barely tolerate my presence one moment and then turned her bright smile on me the next? And what was I to her?

  Autism had made it impossible for us to communicate about any of this. We human beings rely on stories to explain and order our lives. The core of each story remains the same, though we add and subtract layers depending on the audience, the weather, the balance of happiness and sadness on a given day. Margaret’s stories remained locked away inside her mind and heart. She tried to explain herself, but she often did not have access to the words, which frustrated her as much as it frustrated the people around her. She had tried to learn some things by rote to give us some satisfaction when we asked, but she often said these things at random, as if searching for what we wanted to hear.

  What could I do about any or all of this?

  These questions had been much easier to grapple with when I lived sixteen hundred miles away in New Mexico. The distance between us meant I didn’t have to do anything. I could just ruminate about Margaret, her autism, and everything that came with it—the guilt, the hilarity, the stress, and the plain bewilderment that had never seemed to diminish over the course of more than thirty years. But now I had decided to move closer to home. So what had been a two-leg airplane trip would soon shrink to an alarmingly short five-hour drive. The move would do away with all the easy excuses that I had never realized I relied on so much—excuses like Oh, it’s so far, or I don’t have the money to fly, or I wish I had more time off. The truth of the matter is that living so far away had provided me a safe haven from the demands of family and that nagging question that had been with me since birth: Just what are you going to do about Margaret, anyway?