How to Be a Sister Page 9

  Medical experts call this kind of thing echolalia, a behavior that is classified as a compulsion common to people with autism. Writer Kamran Nazeer, who has autism himself, describes it as a desire for local coherence: “a preference for a limited, immediate form of order as protection against complexity or confusion.”

  That might be true about echolalia, but in our family the repetition of these phrases was often the only kind of conversation we could have with my sister, so we welcomed it. And throughout the years, these verbal tics, the things she remembered, piled up to become a kind of historical catalog for our family. As such I’ve come to think of Margaret as the archivist of the family history, which is not so much made up of a linear sequence of trips and celebrations, vacations, and holidays like normal families might have. Instead, our collective past is cobbled together out of the things that my sister said and did, then remembered—the bizarre and mundane, the hysterical and the heartbreaking.

  So, for example, one Easter when my sister Ann called to invite me to dinner, I paused and then I said, “Eas-TER-mass!” and we both cracked up. We were both remembering a particular spring morning that my mother had been struggling to get Margaret ready for church. “Honey, it’s time to go to Easter mass.” Our sister was really irritated, pulling on her wrists, stamping her feet, resisting, and yelling, “Eas-TER-mass!” in an angry echo of our mother’s kind voice. None of us can say “Easter” anymore without at least thinking of this. Similarly, one recent summer I stood in the grocery store aisle next to my brother as we tried to choose a salad dressing. We both sang out, “WISH-bone!” and snickered at each other. Margaret used to say this, flinging one hand high in the air—happy or irritated, I can’t recall—but Larry and his law school housemates kept it alive all these years. So we stood there, two decades later, giggling to ourselves in the store. Now we were the ones being stared at, but we finally didn’t care.

  Over the years these episodes became the unlikely family glue, sometimes because we were all laughing and at other times because we were all made miserable by whatever Margaret was saying; whatever the case, we were in it together, and it was often the only kind of family togetherness we really had. We were like survivors of the same hurricane, strangers who clung to each other in giddy relief after the storm had passed. Laughter was our way of finding some way through what would have otherwise been a dark and endless labyrinth of small disasters, like “Here Comes Peter Cottontail.”

  This song was one of the lively secular tunes Margaret learned in her music class at the public school she attended. My Catholic school, which I was led to believe was superior in academics and spirituality, didn’t have a special education program. So Margaret climbed onto the public school bus every morning in her “play clothes,” and the rest of us marched down the hill in our matching red cardigans and blue corduroy pants. In music class we droned our way through churchy dirges like “Make Me a Channel of Your Peace” or shouted “THE KING OF GLORY” at evening concerts. We stood shoulder to shoulder with the other little soldiers of Christ, dutifully singing the praises of our Lord in the dark, damp cafeteria, which smelled eternally of warm bologna and bananas from our brown bag lunches.

  Not Margaret. Her set list was full of happy, God-free tunes. This was public school, after all. So while our Easter season brought songs of the joy of resurrection from the dead, Margaret’s class sang about retail:Here comes Peter Cottontail. Hoppin’ down the bunny trail.

  Hippity hoppity Easter’s on its way!

  Bringing every girl and boy baskets full of Easter joy.

  Things to make your Easter bright and gay!

  There are jelly beans for Tommy, colored eggs for sister Sue.

  There’s an orchid for your Mommy and an Easter bonnet, too!

  The song was entered into Margaret’s hard drive, and there it stayed. Margaret loved that song and sang it often, and not necessarily at Easter. She’d pull it out any old time, just as she would put on a Christmas record in July, which always made the summer days seem hotter.

  One day, when Margaret, Larry, and his friend John were sitting in our twelve-passenger Chevy van waiting for our mother to come out of a store, “Peter Cottontail” morphed into something completely different. The boys grew hot, then bored, as you do when you’re a kid waiting for an adult to finish some eternal and meaningless errand. Margaret became anxious, as she often did when she had to wait. Her anxiety turned to impatience, and she started singing “Here Comes Peter Cottontail” to voice her frustration, clapping her hands to keep time. Her singing turned irritated and then angry.

  To pass the time, Larry and John started teasing Margaret, which really pissed her off. She started singing louder and louder and clapping harder and harder. Soon she was banging her hands together and yelling, “Here comes Peter Cottontail!” Then, “Here comes Peter COW-ten-table!” All the time, Larry and John were needling her, asking, “Which Cottontail, Margaret? Which Cottontail?” After they got her all wound up about Peter COW-ten-table, they decided to try to get her to say, “Here come the cops! Hide the pot!” Somehow, by the time my mother got back to the van, these two phrases had merged, so now when the boys asked my sister, “Which Cottontail?” she’d say, “Here come the cops! Hide the pot!”

  On the day in question, of course, she was in a bad mood. But as the months and years passed and we kept asking her this question, she would laugh right along with us, and so “Which Cottontail?” became a shared joke. It’s impossible that Margaret understood why we thought it was funny, but she seemed to think it was funny to make us laugh. Even our straitlaced mother, who wouldn’t recognize marijuana if she found it growing next to her petunias, thought this was hilarious, although she scolded us as she laughed. The last thing she needed was to have my sister pull out this doozy in public.

  The question remains: Why would we do such a thing to a person made so vulnerable by her disability? How could we, raised to be good young Catholics, take advantage of our poor, handicapped sister? We weren’t trying to be mean; we were just being ourselves. So was Margaret.

  About 40 percent of children with autism don’t speak at all, so Margaret was luckier than some, even with her limited communication. She didn’t say a word until she was about four years old. And then she said only about four words, two of which she made up herself, “quadee” and “ninga-ninga.” When she did speak, she exhibited echolalia, repeating what had been said to her. She first learned to talk by echoing things her speech therapist had said. At some point she also picked up the habit of cupping her hand and talking into it. My mother theorizes that this might have helped her hear the sound of her own voice better. Whatever the reason, when she does this, she looks like a covert CIA operative talking into the little microphone wired down her sleeve. She still has this habit; sometimes I’ll catch her circling a room and whispering into her hand like she’s trying to figure out where the shooter is so she can communicate with head-quarters.

  As I mentioned earlier, Margaret has trouble with pronouns, too, which is also common for people with autism. For example, if you ask her “Do you want breakfast?” She is apt to nod and say, “You want breakfast.” All of this is to say that communication has always been difficult for my big sister and that her teachers, staff members, and family have tried all kinds of things over the years to help her with the give-and-take of conversation and information.

  Educational props sometimes failed, as was the case with a book that was supposed to explain prepositions by illustrating different objects being next to, over, under, and beside each other. My mother didn’t like this book, partly because it didn’t make any attempt to illustrate objects that might be next to each other in the real world. There was a particularly onerous series about a sheep, a table, and a hamburger that were all the same size and scale. Whoever was working with Margaret would point to the page and ask, “Margaret, where’s the sheep?” and she’d respond, robotically, “The sheep is between the table and the hamburger,” as she’
d been taught. She never said, “It’s in the middle.” Or “The sheep is next to the hamburger and also next to the table,” or “My, that hamburger looks tasty sitting across from the table!” She never demonstrated that she understood the relationships; she just echoed what she’d heard.

  This all happened decades ago, and yet, when I recently asked her about the sheep, she said, without missing a beat, “The sheep is between the table and the hamburger,” and she gave me a little smile. When we were kids, we asked her this question over and over again, and she’d give the same answer, and we’d all fall apart laughing. My sister laughed right along with us. I really don’t know why she thought it was funny, but at least we were laughing together, which was just this side of normal. Whatever the reason, the sheep, the table, and the hamburger have stuck around over the years, a testament to Margaret’s memory and to our history together, if nothing else.

  AS AN ADULT, it horrifies me to think about the things we taught Margaret to parrot, intentionally and unintentionally. “Neal Diamond is a foxy woman” was one of them. “This is the fucking shit” was a favorite of mine that Margaret picked up on her own and would intone at random. “Larry’s wearing Crustos!” she’d sing, along with “Larry push a penis!” also inspired by our teenaged bathroom humor. “Well, Mike!” she’ll still say, perfectly mimicking my mother’s surprise at something our brother did years ago that no one can remember.

  These phrases were our common language when we couldn’t share much of anything else. And they linger still. Just the other day, when I was riding my mountain bike way too fast and nearly crashed into a tree, a Margaret-ism sprang unbidden to my lips from deep inside my own memory: “SOME-in-a-BITCH!” I yelled and laughed out loud in the woods all by myself. And one recent morning as I waited sleepily in front of the toaster with a jar of Adams peanut butter in my hand, I thought to myself, “PEA-nut butter and JE-lly!” in a familiar sing-song voice and snorted so hard that my coffee came out my nose.

  Yes, we teased her, but we loved our sister and fiercely defended her from outsiders, like the unkind neighbor kids who heckled my silent sister for riding her bike on the sidewalk as she bashed her front wheel up, over, and down off of each non-bike-friendly curb. Or the kids at school who made “retard” jokes. Then there was that scary neighbor mom who chased Margaret out of her house in a bath towel. My sister had simply let herself in to make a (PEA-NUT butter and JE-lly!) sandwich while this woman was soaking in the tub. At the time, I remember wondering what she was doing taking a bath in the middle of the day anyway. And it was just a sandwich!

  It occurred to me recently that the rest of us thought these things—like the sheep and Peter COW-ten-table—were funny because we could control them. We knew Margaret wouldn’t pull out the pot warning unless we conjured it. She wouldn’t unleash this particular phrase in public unless we hit the spring lock in her mind that released it. It was like a magic trick we were all in on. And maybe it was somehow a comfort for all the things she did say in public, the endless things she did let loose on us. This comforting certainty was as significant as it was unusual; our collective childhood was full of the unpredictable from our sister—an infinite number of mortifying episodes in silent churches, crowded malls, and sacred ceremonies. They are seared into my memory because of what I like to call the Oh, No Moment—the instant it became clear that Margaret was about to explode with mirth, anger, or impatience and that all eyes were about to turn to us.

  Margaret always seemed to get revved up exactly when we wished she’d just be quiet and blend in. This kind of thing was especially hard when we were teenagers—a time in life that is difficult enough by itself. I grew adept at pretending that whatever was happening wasn’t happening to me; I became a kind of silent observer in my own life. Shopping with Margaret during a visit with our Portland cousins was such an occasion. They took us to a brand-new atrium-like shopping mall downtown, the kind with a big escalator in the middle and three open floors rising up in a large, echoey glass arch. As we stepped onto the escalator on the top floor, Margaret leaned out over the rail, looked into that wide-open space teeming with people, and hollered, “Get your hands out of your pants!”

  She loved yelling this sentence and yelled it all the time. The first time she had heard it, I’m sure, it was probably a quiet reprimand from my mother, a woman of infinite patience, who worried about Margaret’s habit of standing around with her hand down her waistband. She wasn’t touching herself or anything. She was just standing there with one hand inside her pants, like little kids will do, like my sixth-grade math teacher did, as a matter of fact. But my mom was always working on the little graces to try to help Margaret blend in more. “Life is going to be hard enough for her,” Mom would say.

  Somehow, unaccountably, this gentle correction had become translated into a command of Wizard of Oz–like proportions in my sister’s head. “Get your HAAAAANDS! Outta your PAAAAANTS!” she boomed, holding on to the last word, loving the echo in the mall. When my brothers and I shushed her, she started cackling and yelled it again: “Get your HAAAAANDS! Outta your PAAAAANTS! Get your HAAAAANDS! Outta your PAAAAANTS!” She kept yelling until she was laughing too hard to get the words out. She doubled over, hanging on to us as the escalator descended, helpless with laughter. “Get your ha! Ha! Ha hahahahahahaha! Get your hands! Hahahahaha!”

  My brothers and I felt like the whole world was watching as the escalator crawled to the ground floor and we held up our big, hooting sister. We kept trying to get her to shut up, which only seemed to get her going again. For some reason, it always made Margaret hysterical with laughter when we got mad at her in situations like this. “Get your hands outta your pants!” and her laughter echoed behind us as we fled the mall, the big glass doors finally swinging shut behind us.

  The quiet and holy Catholic church provided another regular venue for Margaret’s verbal showboating. My parents seemed to think a weekly dose of the Holy Trinity was imperative for their young brood, especially Margaret, who, unlike the other four of us, didn’t have religion class every day at school. When I think of it that way, I can understand why they kept bringing her to church, even though my mother often ended up listening to the end of mass behind closed doors in the foyer with the young mothers, their fussy babies, and Margaret.

  More than once my sister ran up on the altar and started a lively rendition of some tune, including “Yes, Jesus Loves Me,” before my mother sprinted up and chased her off. Another time, when a visiting priest took a little too long with his homily, Margaret stood up and said, in an exact echo of my mother’s scolding voice, “That’s enough!” Surprised, he stopped, glanced around at the congregation, and, good sport that he was, said, “Well, I can’t argue with that.” And he sat down. That time, everybody laughed along with us.

  What’s also remarkable about these songs and phrases is that Margaret’s reproduction of them was exact in tempo and pitch. Every time she said, for example, “EAT your GOD! DAMN! SANDWICH!”—an echo of our exasperated father—she bellowed it grandly, holding each word but the second for two beats. She had a talent for timing, tempo, and pitch that was quite amazing and might have been the envy of some musicians. However, this skill could backfire, because she couldn’t tolerate any music that was even slightly off pitch, like at holiday mass when we had visiting musicians. We could almost always count on some pimply-faced college student to straggle off key during his “Silent Night” trumpet solo. While the rest of us smiled woodenly and prayed to Jesus that he wouldn’t play every single verse of this endless holiday tune, my sister became apoplectic. At the first bad note, she’d stick her fingers in her ears, squeeze her eyes shut, and shriek to block out the sound. “Reeeeeeeeeeeeeeeee! Reeeeeeeeeeeeeeeeee!”

  To be fair, that’s what the rest of us wanted to do, too. But when someone is doing their best, it isn’t polite to tell them they suck. My mother would struggle to silence my sister. Everyone sitting near us would pretend nothing had happened, while those s
itting farther away would strain their necks to stare at us. The young trumpet player would suffer through the rest of the mass, knowing that as soon as he picked up his horn, that weird kid in the third row was going to sound off like a tornado siren, and the rest of us would look at the floor, look at the pew in front of us, look anywhere but at each other. Because if we did, we would fall apart with embarrassment and laughter.

  IN THE HISTORY of my sister’s unholy disruptions, one church outburst took the gold in the Garvin Family Hall of Shame. It happened one Sunday during the sign of peace when we all had our guards down. This is the time during Catholic mass before communion when you turn to the people around you, extend your hand, and say, “Peace be with you.” As a kid I loved this part, because we’d been sitting in the dark for almost an hour, and it was a relief to be able to move around, stretch, talk to other people, and even yawn openly without anyone noticing. I have to wonder if the Vatican II folks stuck it in there to make sure people woke up before the end of mass.

  My mother was always at Margaret’s side to facilitate this process, to remind her to hold out her hand, to tell her what to say. But on this particular day my mother must have had her back turned for a nanosecond as she greeted someone. Margaret was sitting near this nice little blue-haired lady, who was, thankfully, hard of hearing. When the woman put out her soft little boneless hand and said, “Peace be with you, dear,” my big sister reached out, grasped her hand, and pumped it up and down as she exclaimed, “I’m gonna KICK the SH—!” and would have finished “—IT outta ya!” had my mother not spun around and clapped a hand over her mouth.