Paul's Prayers: A Mother's Account of Raising an Autistic Son 2017061416, 2017050336, 9781680993486, 1680993488

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Praise for Paul’s Prayers “Susan Anderson’s writing is like a breath of fresh air. Her descriptions of her son and his autism are so real and powerful, I feel as though I’m standing next to her in the room. I highly recommend this book for anyone who would like insight into the world of raising a special-needs child.” —Carrie Cariello, author of What Color Is Monday and Someone I’m with Has Autism “Any parent who has been handed an unexpected trial will appreciate this honest, vivid, and inspiring tale of raising an autistic son. There is heartbreak and frustration but also triumph and hope, as Susan and Rob find the strength through their faith to offer their son unqualified love.” —Philip Gerard, professor of creative writing at University of North Carolina at Wilmington and author of The Patron Saint of Dreams and Down the Wild Cape Fear “Paul’s Prayers is a peek into one mother’s journey alongside a very special son. Author Susan Anderson’s writing is honest, poignant, and mind-opening as she reminds each of us to cherish our relationships as we move along our everyday path to God’s love.” —Lisa M. Hendey, founder of CatholicMom.com and author of The Grace of Yes “Many of us are gifted with loved ones who think and see the world in different ways. Susan Anderson’s book about her autistic son, Paul, is a highly readable, moving, human, and sometimes humorous account of the joys, trials, and challenges of raising an atypical child. As all good parents do—for all of our children—Susan and her husband Rob struggled to help their son navigate this complex world and grow to be the man God wants him to be. A wonderful book, both for those whose lives are touched by atypical thinkers and those who want to understand them better.” —Arthur Powers, co-founder and vice president of the Catholic Writers Guild and author of The Book of Jotham “Paul’s Prayers could just as fittingly be entitled ‘Paul’s Song.’ In lyrical prose, author Susan Anderson portrays her adult son Paul, who is challenged with autism. Her story is at once a heartbreaking ballad of his lifelong struggles and an anthem in praise of his heroic fortitude. Though the narrative is focused on Paul, in the telling of the tale, his mother’s remarkable strength and wisdom are revealed as well—an inspiration for us all.” —Paul Thigpen, editor for TAN Books (Charlotte, NC) and author of The Burden and A Dictionary of Quotes from the Saints

Copyright © 2018 by Susan L. Anderson All rights reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts win critical reviews or articles. All inquiries should be addressed to Good Books, 307 West 36th Street, 11th Floor, New York, NY 10018. Good Books books may be purchased in bulk at special discounts for sales promotion, corporate gifts, fund-raising, or educational purposes. Special editions can also be created to specifications. For details, contact the Special Sales Department, Good Books, 307 West 36th Street, 11th Floor, New York, NY 10018 or [email protected]. Good Books is an imprint of Skyhorse Publishing, Inc., a Delaware corporation. Visit our website at www.goodbooks.com 10 9 8 7 6 5 4 3 2 1 Library of Congress Cataloging-in-Publication Data Names: Anderson, Susan L., 1964- author. Title: Paul’s prayers: a mother’s account of raising an autistic son / Susan L. Anderson. Description: New York, New York: Good Books, [2018] Identifiers: LCCN 2017061416 (print) | LCCN 2017050336 (ebook) | ISBN 9781680993486 (e-book) | ISBN 9781680993479 (hardcover: alk. paper) | ISBN 9781680993486 (ebook) Subjects: LCSH: Autistic children—Biography. | Christian biography. | Autistic children—Family relationships. Classification: LCC RJ506.A9 (print) | LCC RJ506.A9 A653 2018 (ebook) | DDC 618.92/85882—dc23 LC record available at https://lccn.loc.gov/2017061416 Hardcover ISBN: 978-1-68099-347-9 eBook ISBN: 978-1-68099-348-6 Cover photograph by Susan L. Anderson Jacket design by Mona Lin Printed in the United States of America

For Our Most Sorrowful Mother— and mothers everywhere …

“… And a sword shall pierce your own soul too …” —Luke 2:35

1

ELEVATOR SHAFT

“Everyone should be able to do one card trick, tell two jokes, and recite three poems, in case they are ever trapped in an elevator.” —Lemony Snicket My cell phone rang at 2:30 a.m. “Yes, Paul?” I heard a breathy sigh, then his pause. “Uhhh, Mom, it’s me, Paul. I’m stuck in the elevator on the eighth floor.” His voice shook. At twenty-four, my son Paul was pretty cool about it, considering he is mildly autistic and spring-loaded toward anxiety. Our vacation had been cut short by a family emergency. The airport was six hours away. Two daughters, Paul, and I were up and down the elevators packing the minivan with luggage. I’d just wiped off the kitchen counter and tossed some half-eaten lasagna in the trash. How were we going to get to the airport on time? Overwhelmed, I thought fast. I said, “Paul, do you see a panic button? It’s red.” “Uhhh …” he stammered, “yes, there is a red picture of a phone.” “Good, push that and stay on your phone, I’ll talk you through it.” A lady dispatcher answered the line. “Can I help you?” Her voice echoed through the chamber. It sounded like Paul was in a dark cave. Thank God the lights worked. Paul said slowly, “Yes, uh, uh, I am stuck—in an elevator—uh, uh, on the eighth floor at our beach condo.” Dispatcher: “Do you know the address?” Me: “Pelican Watch, Blue Lake Drive, Carolina Beach.” Paul parroted my message to the dispatcher. Dispatcher [to Paul]: “Sir, are you okay?” Paul [flat, dull]: “I think I’m having a panic attack.” Dispatcher: “Okay, well, just take it easy, sir. We’ll get somebody out there right away.” Paul: “Okay.” Autism is weird. Because the autistic person’s wiring is a bit skewed, many times their senses receive stimuli in different ways. The individual’s perception, and then their expression of it, manifests itself in unusual behaviors. That was why Paul’s panic sounded flat, dull, even monotone. He was overloaded. Picture a windup toy running out of wind. He slumps in posture. He talks very slowly, like a phonograph record on the wrong speed. It just figured that he was stuck in an elevator. My son Paul indeed often gets the shaft, or the short end of the stick. There were two elevators in this eleven-story building, our condo being on the ninth floor. The fire department and paramedics arrived, no sirens, only headlights moving through the quiet beach streets in the wee hours of the morning. I greeted them. One firefighter dipped into the stairwell. Meanwhile, the rest of us huddled in the lobby. The clock ticked. I planned on stopping for gas, coffee, and zooming at seventy-five miles per hour, counting on my GPS, which I’d named Dash. A paramedic spoke with another firefighter as if I were not there. “The subject says he’s having a panic attack.” I said, “I’m his mother. He’s autistic. I was on the phone with him, to talk him through it. He’s okay.” I gulped coffee. Caffeine in hand gave me resolve. This too shall pass. In the next instant, Paul appeared outside the front glass, peering in at me. How did he get there? The fireman had unlocked the chamber on the eighth floor, it being between two floors. Paul climbed up and through, and they had come back down within minutes. Paul’s eyes were bugging. Gesticulating, as if it helped him get the words out, he flagged his right hand at his temple, the other joining lower for support, like a boxer with a right hook. “Thanks guys. I really appreciate you getting me outta there!” The first responders smiled at my son. I thanked them all as we got in our minivan, as I checked for all our belongings. Rolling out of the parking lot, Paul clicked his seat belt and gave a big sigh. His hands gripped the armrests as if readying for another liftoff. My response being crucial—for I am the First Responder—I reached back to grab his hand, smiled, and asked, “Are you okay?” He’d assumed that I was wound as tight as he was, stretched elastic, ready to splinter and snap. I had to go into calming Mom zone.

“That was so terrible!” He gestured with one hand in the air. In dire need of comic relief, my daughters and I laughed—we couldn’t help it. Paul could have perceived it two different ways: one being that he would think we didn’t understand or weren’t compassionate, the other being that we were relieved. I think he was a little surprised at our reaction. It subdued him. I was glad for this. His eyes wide and bright. A smirk crinkled his mouth. We drove quietly away as the lull of ocean waves rocked the rest of Carolina Beach in sleep and a mirrored moon shone over a black sea. I glanced back at Paul several times. Through a settling of dust, I saw a change in his demeanor. It had been a frightening experience, but the impishness in his hazel eyes showed that he realized the humor. He tried it on for size and remarked, “I recommend the stairs.”

2

IN THE BEGINNING …

“… And what about your little nose? He knew you’d need it for the rose, And as for your soft curly ear, He knew there would be songs for you to hear. How can it be that you are you? He thought you up and so you grew. Because you’re mine, it must be true That He was also thinking of me too. For all you are and all you’ll be, For everything you mean to me, Though I don’t understand, I know you’re from the Father’s hand.” —Michael Card, “All You Are” The ad read “Circa 1895.” My husband Rob found an index card tacked to the housing bulletin board at Regent University. I felt at home the moment we stepped into the old Victorian. The stairs creaked. The fridge was out of a Sears circular from the fifties. The next room sang “nursery” to me, hopeful as a lullaby. There was a balcony off the master bedroom, perfect for a porch swing, canopied by a huge black walnut tree that was older than my grandmother. The floors were a bit uneven, settled according to the history that lay underneath the house. You could roll a marble from one end of the center room to the other. If walls could talk. The antique clawfoot tub sealed it for me. Our dwelling was split into two apartments, with a single mother and her two children in the other one. The rent was dirt cheap but the charm was ritzy in the middle of Olde Towne, Portsmouth, Virginia. We’d been married a year. Rob was going to graduate school and I was working as a manager for a drugstore. We became good friends with our downstairs neighbor Carol, sharing a clothesline and washing machine, and even spending Sunday dinners and Christmas together. Carol ran up the stairs one day, shrieking, “Santa’s been here!” The owner of the house had cleaned out his storage shed and found an old Formica chrome table and chairs buttoned in red vinyl. He wanted us to have it. We moved it to our eat-in kitchen. In turn, Rob found a forlorn pine chest in the backyard shed and refurbished it, turning it into a toy box for Carol’s kids. After two years of marriage, Rob and I decided it was a good time to start our family. Rob worked full time while in school and was being groomed to step into a position with a company marketing new toys and games. I was ready to say good-bye to working fifty-plus-hour weeks at the drugstore, ready to be a Mommy. I was so ready. Pregnancy symptoms were strange. I felt a little off, as if it were a virus. But this was different. I couldn’t keep enough food in my stomach—my metabolism seemed accelerated. I wondered if expecting a baby was like this, like an invisible tenant was moving into my space, my world. Eagerly I purchased a pregnancy test on my lunch break at work. At five a.m. the next day, sometime in mid-May 1989, the little window on the stick showed a pink cross. A plus sign! I roused Rob, and of course he was thrilled. He laughed at my elation before dawn and tried to go back to sleep, but to no avail. I couldn’t contain myself, Rob wasn’t enough, so I traipsed downstairs and woke my friend Carol to share my news. That’s my typical style, risking my neighbor’s good humor to see if she was the morning person that I was. Rob knew that about me early on, as well. When we were dating, I would call him on a Saturday morning about eleven so that we wouldn’t miss brunch at the university cafeteria. This was payback for his knocking on my dorm door at four a.m. to drive to the beach for sunrise surfing. The pregnancy was picture perfect, aside from terrible nausea early on and sciatica pain midway through. We took the usual Lamaze classes and I dog-eared the pages of The Womanly Art of Breastfeeding by the La Leche League. Paul is the oldest of our six children. Each pregnancy, when it came to carrying the babies low in the womb, I had a whopper of a sinus infection, hormonal ups and downs, and varicose veins. But no stretch marks. How about that? Gaining forty-five pounds to grow babies was just something my supple, yet thick skin could handle. I was meant to be stretched as a mother.

Two weeks overdue, I walked into the hospital scheduled to induce labor. I was already eight centimeters dilated and all it took was breaking my water. From there it was a hard, fast five hours. At one point I said to my mom, “Something is wrong, I’m not doing it right.” That’s me, too. When the going gets tough, I think it’s my fault. Rob stood at the foot of the bed, bracing my feet so I could be comfortable. I sat at an incline through the contractions, my legs bent, my hands digging into the mattress, my arms straight to endure the pain. I breathed methodically, closing my eyes, and against my own will, felt as if I carried a grand piano upstairs all by my lonesome. When we learned by ultrasound that our baby was a boy, we began calling him Paul. Paul was my grandfather’s name. Short, strong, and one-syllable to the point. That’s how we wanted our sons to be. By the time we got to the birthday, we were so excited to meet Paul, to see who he looked like, to follow the unveiling of his personality. In reading his movements within my body and synching to his hiccups and kicks, I felt I knew him already on a deep level—a familiar stranger. About halfway through, the nurse measured Paul’s heart rate. I changed position to sit more upright. The heart rate dipped and the nurse said, “He doesn’t like that. Let’s move you back the way you were.” Later I would recall this detail. When you find out officially that your child is autistic, myriad reasons come flashing back to you. Was it something I did? Was there a moment that could have been changed? A millisecond? Like passing a car accident—had I been there five minutes earlier, that could have been me sandwiched in that crash. Was it the hundred-year-old house—lead paint—old pipes? Was it the summer before that I drank a daily quart of Wyler’s soft drink with the fake sweetener, aspartame? Was it the hurried and so-called necessary vaccinations prescribed for every infant, regardless of individual physical constitution? Was it that Paul was my first baby and that all my hereditary junk was unloaded on the trailblazing firstborn child? Something or someone had to take the blame. Paul lay there all powdery and swaddled, all body parts counted, Apgar scores sound, belting out a healthy cry. When he was quiet, he had a knowing gaze to his eyes, intense like an old soul. He had a deliberate lift of his head and looked toward Rob when he cooed at him. He was a ripe fruit, the beginning of our family. In a word, LOVE. At the time, there were no signs that anything was amiss. All we saw was Paul.

3

THE MARAUDER ARRIVES

“He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young.” —Isaiah 40:11 The day of Paul’s birth. The first clue revealed itself in the fluorescent lights of the hospital nursery. Glaring down from the ceiling, they were a cold contradiction compared to dim womb water. It seemed that these buzzing bulbs had an intensity to them, like a search party in the middle of the night, the kind with German shepherds barking a trail. Paul’s tiny eyelids did little to shield the glare. An old-school nurse brought him to me, his little arms flailing, wiggling out of his swaddling clothes. “He’s waking up all the other babies!” Maternal instinct kicked in and I said, “Bring him to me, please.” I also asked her to turn the lights off from the switch by the door. I then pulled the string tethered to the gentler lamp on my headboard. He nestled, rooting and feeding, like he’d done it long before he was born, like God whispered in his curly little ear, “This is what you need.” He calmed right down. I thought, now, that wasn’t so hard, was it? The beginning of our firstborn son’s life was typical for a newborn. Sleep, cry, feed, diaper, and repeat. But around week six, he changed. He was mostly placid until about three in the afternoon. I’d preempt it, hoping that maybe this day would be different than the day before, but his constant storm pattern reminded me of a South Florida afternoon. I called the storm the Marauder. Within minutes, a sunny blue sky would transform into a torrential squall: wind, rain, thunder, and lightning. And as suddenly as it came, it would leave. I would give him a bath, breastfeed him, change him, rock him, and he’d begin. I tried everything, walking, patting his back, but his little frame clenched and writhed. His skin color rose like mercury, red and hot. His face twisted up into a toothless cantankerous howling old man’s. I’d heard of colic, but this wasn’t that. It was something else. Although I was a new mom, somehow “colic” didn’t have the right ring to it. But it was fierce. It meant business. Paul didn’t cry all the time, only at this time of the day. No one told me what to do. I just figured it out, to keep myself from losing control. It was understandable how an unstable mother could act out in frustration. I wouldn’t do that, but I could understand. Other things needed doing in the afternoons, like laundry and dinner. I would walk to our room and lay beet-faced Paul, squirmy and kicking, facedown in our full-sized bed with two pillows on either side of him, so he wouldn’t roll off onto the hardwood floor. I would sigh and scoot downstairs to check on the laundry. Heading back upstairs, his little cry would echo down the stairwell cavern, rising in volume the closer I got. I would walk back in the bedroom and bend down to pat his back and feel his steamed breath on my cheek. I hoped that my touch, my smell, my love could break through the noise of his system as he grew redder by the minute, sweat pooling within the corners of his eyes. I would sigh again and walk back to the kitchen. After rinsing chicken parts and sliding a pan in the oven, I would scrub my hands and listen to Paul’s steady howl over a running faucet. Walking back to him, my blood pressure would rise with the octave of his cry. Thirty minutes and he was still at it. The warm vapor of sweat exuded beneath his sleeper, a bundle of fumes. I turned him over, unsnapping this layer, to leave him again in a diaper and onesie. He didn’t break cadence. Again, I leaned to kiss his small oval of mouth before rolling him back over to belt it out with the world. Peeling potatoes, slicing them, I would set them on the stove to boil, and after some minutes, the pot boiling, I’d turn down the burner and open a window, inviting a mild breeze amid the stormy gusts of early parenting. Returning to Paul again, I could no longer hear his crying. I thought the storm had passed. The room was eerily quiet, but Paul’s little body continued arching up like a bow, his head lifting laborious now, his feet a little less vigorous since he started. His mouth was still as wide, but now he uttered only a rasp. He’d lost his voice, but not his intention. Heart melting into a puddle, I picked him up. He opened his eyes as tears poured and the fight waned, the storm’s fury subsiding. I hugged him close and he melded to me. He was placid once again. The Marauder had gone. I heard Rob’s car door slam and was relieved. These crying spells lasted about three months.

4

ONE EYE OPEN

“Wynken and Blynken are two little eyes, And Nod is a little head, And the wooden shoe that sailed the skies Is a wee one’s trundle-bed. So shut your eyes while Mother sings Of wonderful sights that be, And you shall see the beautiful things As you rock in the misty sea, Where the old shoe rocked the fishermen three: — Wynken, Blynken, And Nod.” —Eugene Field, “Wynken, Blynken, and Nod” There were cues and clues that Paul maybe had autism. But the word autism was as foreign as the future. He was sensitive and a bit strong-willed. A sensory bundle of nerves, a diagram from seventh grade science class, where the ends of tubules are sparking and fraying at the ends. Paul would not sleep through the night. I’d sit in a rocking chair and nurse him at bedtime, around nine p.m. His breathing would settle into a hum, his body limp. I’d place him gently in the crib, about twenty feet away from our bed. Paul would sense the stillness and the lack of his mother’s arms, and he would wake, crying loud. I’d rock him again, letting him nod over my shoulder, until sound sleep took hold once more. I’d take him back to the crib, thinking that he was slumbering for the night, and place him again on the mattress. He’d wake again, and this time the volume would be earsplitting. By eleven o’clock, I was past the point of fatigue. Desperate, I found a book about establishing sleeping patterns in babies. We kept the secure routine of bedtime, the bath, the nursing, the singing of lullabies. Then I placed him in the bed and left the dark room for two minutes. It was all I could stand. I returned to Paul, patted his thrashing back, walked back out into my bedroom, and sat staring at the clock radio, watching the minute numbers slowly flip forward in time, adding to the duration, five minutes this time. Walking back to Paul, patting his back, calmly saying, “It’s alright, Mommy’s here.” I walked back out to watch the clock, adding minutes and returning at increasing intervals. The first night took an hour and a half. The second, forty minutes. The third, twenty minutes. The fourth night, he dropped off almost immediately. Each child comes with his own temperament, likes, dislikes, tendencies, and interpretations of his environment. I’d have to be a simpleton to state the obvious, but the vagaries that Paul’s babyhood presented seemed so accentuated. I compare Paul’s behavior to a graph of a heartbeat. There are the normal spikes and dips, predictable and consistent. Paul’s would read more like a jagged lightning bolt, not confined to a monitor screen, but wide as a silver sky, sizzling and zigzagging all over the place. One minute he was docile and passive, the next he was screaming his head off. And with lightning comes thunder. Paul had learned to rest, yet the amount of help he needed indicated something greater beneath his surface. Something told me that life wasn’t going to be smooth or easy for him. When we are sleep deprived or under stress, we can’t think, use our head, or see a simple commonsense approach. We need help in discerning the problem. It may be a book written by an expert. It may be attending a seminar. It certainly takes a great deal of prayer to confront the buffeting storm that I call the Marauder.

5

TODDLING AND THE MADDING MARAUDER

“Why would anyone steal a shopping cart? It’s like stealing a two-year-old.” —Erma Bombeck When Paul was about eighteen months old, we were still living in the old Victorian. In the backyard, a huge black walnut tree bordered the house. Over the last hundred years, its roots had cracked and split a sidewalk in the yard. One summer day, we trotted out back to fill up a wading pool, carrying a beach bag of sailboats and water toys. The water was cold. Rather than getting in the pool, Paul played with the hose. He was enthralled with the patterns the water made on the cement. He pointed it high and watched it arch up into a fountain and cascade down, splashing and slapping the pavement. His hazel eyes followed it, gurgling, darkening the bark of the tree, seeping down under the soil, disappearing; saturating the ground underneath. The funneling sound was intriguing. He would remember polystyrene and he would think that that’s what kelly green smelled like. He held it up to his mouth, sopping everything, drinking it. He did this for a long time, especially drawing patterns on the sidewalk, rivulets extending from his hand as he directed the flow. He swam with his senses, in his own private reverie of water, like he was one with it; the wonderment of a child. How privileged he was to discover a simple delight. I often watched him as he played, taking in his perspective. He was certainly quiet, pensive. Somehow, these impressions of when Paul was little solidified who he would always be. I wondered at his growth. Would who he was as an infant, a toddler, a four-year-old, alter all that much? Deep within my spirit, I didn’t think it would.

The Terrible Twos are a mystery. Overnight, that cute little bundle of joy transforms into the word “No!” The Marauder exponentially turned up the gas on this concept. It was as if my little Paul went through a metamorphosis into something resembling a different creature, and not a human one. Mealtime was a mess. In full bib regalia, I’d set him up with dinner. He’d grab a handful of mashed potatoes and throw them on the floor, leaning over the side, watching gravity perform its center of the planet physics. “No Paul,” I’d say, gesturing with an index finger. He’d do it again. This time, I would pop the back of his hand and clean up the mess. He’d look blankly at me. Then he’d do it again. I’d smack his little hand, three times in a row, to no effect. His skin would be red, yet he didn’t seem to feel a sting. His countenance wouldn’t change. There was no wincing or grimace. It wasn’t the usual playing of a game; it was more like he was forming a habit, ingraining the brain, fusing the wiring. I’d have no choice but to take him out of the chair. When I was in a good mood, usually on a weekend, when there was more time and no deadlines or places we had to be, I’d strip him down to a diaper and let him play with spaghetti. Ha, ha. I didn’t say I was a purist. I wasn’t perfectly consistent. Paul was a very oral baby. The key word here is “very.” Anything and everything he touched went into his mouth. This started right away and continued until he was three; I guess that’s not too bad. When he was an infant, to check anything out, whatever it was—a toy, a sock, a key, anything—into his mouth it went, with saliva drooling all over it. I assumed he was incredibly sensory and that was how he was first learning about texture, shape, and the form of things. I found out later that others raising autistic children had quite similar observations. Sometimes the only thing that seemed to calm him down was the television, but I felt guilty. The evidence was mounting that too much TV wasn’t good for a child’s developing brain. The images, the stimulation was not like real life—it was too over the top in its presentation, too violent, too much like a freight train. Even so, Paul was a very visual child. He needed to see things to understand them. Auditory messages got all jumbled in his ear canal. Because I understand a bit more now about how his brain works, that his attention span handles short choppy blocks, I now see that cartoons were quite effective. Paul also responded well to the music. It was easy to shove a VHS tape in the machine. We resorted to this so much that Paul got very familiar with how it worked. Once I tried putting a tape in and there was a blockage. Pushing in the lid, I saw that Paul had worked several wooden blocks into the cavity of the VCR. The little rascal. I had him fish those blocks out and we were under way once more with a Disney movie. His passive nature adapted to it. God forbid something went wrong, like static on the screen. If his program was interrupted, he erupted.

He cried, rent his clothes, and kicked his legs. He clawed at his face, scratching it redder, punishing himself. The only way we could get him to calm down was to fix the picture. Then we could proceed with the regularly scheduled programming. This was part of Paul being a toddler. He had to learn that things go wrong, and sometimes there’s not a thing we can do about it. He is still learning that. There were outings, to keep us sane. I believed this was how the boys would learn how to behave in public.

We moved across town to a new neighborhood and our second son, Scott, was born into the family. I’d taken them to the mall. Paul was two, and Scotty was five months old. Paul needed a haircut. It was a good day to get out of the house, or so I thought. Scotty sat placidly, sucking on a teething toy in a stroller. He was no trouble. My piece-of-cake baby. I played up the haircut experience with as much “lollipop on a stick” bribery as I could muster. “Paul, it will be fun. You’ll be so grown up. You’ll look just like Daddy! If you’re really good, we’ll get an ice cream cone.” He stared at me as if he had no idea about any of this. I remember the word cut disturbing him. It sounded scary, like the strands on his head had nerves, like strands of hair could feel and hurt. He was trying to wrap his little head around the whole concept. It would have been better if I’d taken the scissors at home, sat him in the high chair, and let him watch a video for distraction. But I didn’t think it would turn out to be such an ordeal. Moreover, I didn’t want to deny him the scrapbook memory of “The First Haircut.” So I trudged into the salon like a true parenting trooper. The stylist was nice enough and showed Paul the chair with the booster seat and a cute colorful cape she’d attach. But wait! Those colors shouted at him. He didn’t want the cape. “Me no like it!” Okay, no cape. Except what would keep the hair from getting all over his shirt? Well, we’ll take the shirt off. No, “Me no like it,” Paul insisted. Then the clippers: how they buzzed, like a swarm of electric bees. He grimaced. He cupped his hands over his ears. This just wasn’t working. So we modified the situation and the stylist calmly gathered her scissors and talked sweetly to Paul. Scissors folded in and out, metal shaving metal, like a hedge clipper. Paul wasn’t having it. He cried, he switched his head back and forth. “Me no like it!” The red-faced Marauder had entered. I nodded to the stylist. “Just do the best you can.” Paul ended up with a decent haircut, but the bluntly cut strands poked through his shirt, under his collar, stuck to his nose, congregated under his armpits. I coaxed, “Let’s take your shirt off and put some powder on your neck. Then you won’t itch.” “No!” he screamed. He resisted me, pinning his elbows to his rib cage. I wriggled and wrestled the shirt off. He was positively mad now. He knocked the powder out of my hand, across the floor. Scotty sat still in his stroller, observing. My hands shook, my head spun, my face flushed. I handed the stylist $10 and said, “Let’s go home, Paul.” He continued screaming, fire-faced, roaring. I tried to take his hand. He slapped it down to his side. I tried pulling him. He bent his knees, digging his heels onto the floor. I had Scotty, so I started walking out, pushing the stroller with both hands, hoping Paul would follow. He stayed for a bit, and I kept walking. He ran out of the salon, trotting after me, shirt off, red and sweaty, screaming, his cry amplified through the atrium of the mall. I glanced over my shoulder, assuring him that I knew he was there. I noticed, at the periphery, two older women assuring me in eye contact. Their message: “We’ve been there.” And I actually thought: “Have you?” We made it to the exit of Sears. It was raining, a downpour, a deluge. I eased the door open and stood under the awning, wondering what to do. Paul screamed on, his system like a record on constant spin. I had an umbrella but it would do no good with me trying to hold it and push the stroller, let alone figuring out what to do with Paul. There was a lady waiting for her husband to get the car, so I asked her if she minded watching Scotty in the stroller while I ran with Paul to get ours. She consented, and I scooped Paul up on a hip and faced the downpour with a barely adequate umbrella. I strapped Paul into his car seat. I got in and Paul demanded, “Where’s Scott—get Scott!” He yelled, tears of panic running down parallel to the rain on the windows. I drove over to the awning, speaking calmly. “He’s right there, Paul. It’s okay. I didn’t want him to get wet.” He continued until Scott’s seat belt clicked firmly. The crying sputtered into a low moan, and then it stopped. By the time we got home, the rain had stopped, and the Marauder had retreated to his lair for a time.

6

THE GRAND SILENCE

“There is prodigious strength in sorrow and despair.” —Charles Dickens, A Tale of Two Cities Paul was four years old, teetering between babyhood and childhood, when fantasies are reality, his senses absorbing, collecting. He’d helped trim the tree, the aroma of pine blending with that of peppermint candy canes. Paul insisted on red and white Js for Jesus. We reenacted the first Christmas with a Nativity crèche, letting the boys handle wooden farm animals, shepherds, Wise Men, Mary, Joseph, and Baby Jesus. Paul stared at the stable and considered what was missing. He observed, “Something is missing—missing—missing …” He repeated the last word with the same tone and inflection, and then he said it again, trailing quiet as an echo; as if he wasn’t ready to let go of the thought. He stepped over to the tree, lifted an angel ornament, and hung it off of a star prong on the roof of the stable. “Paul! You’re so smart. We need an angel, don’t we?” He maneuvered Mary, Joseph, and Baby Jesus around and narrated the story, like he was reading it out of the Book of Luke. “That’s Baby God,” he proclaimed with a helping of reverence. “They had to hide from the bad king,” he noted, his imagination so close in age with that horror, my little Holy Innocent. He raised his eyebrows when he mentioned the bad king. Christmas morning finally arrived. Rob and I both cuddled our coffee mugs, me turning on the tree lights, Rob readying the video camera; tiptoeing around the living room, setting the toyland stage. Camera poised, Rob captured Paul and Scotty as they descended the stairs to open presents. Paul paused on the landing, his little hands holding onto the banister, as if he wanted to make the morning last, not wanting it to be over too soon. His eyes were bright with Christmas. “There’s a pirate ship!” he squealed. “And a sword and shield, and a bike! And Scotty got a bike too!” Paul was fully engaged, like a proverbial kid at Christmas. Totally enamored with decking the halls, making cookies, the Christmas story, and toys littering the living room, having been delivered by jolly old St. Nick. Baking-soda footprints trailed from the fireplace to the tree and veered to the empty plate on the coffee table, covered with green and red sugar traces left from cookies. I pointed. “Look, Paul, Santa was here! Scotty, see … he had snow on his boots!” Scotty, age two, looked long and stooped down, fingering the room-temperature powder. Paul, wide-eyed, took it at face value, the enormity of merriment. Paul trotted over to the sofa and wrapped a plastic cowboy holster around his waist. I pinned the shiny metal sheriff’s badge to his pajamas. Picking up the gun, he pulled the trigger, ka pow! ka pow! Factory plastic clicking echoed from a metal spring inside the barrel, about twenty times in a row. Paul didn’t want it to end. He rode around the living room, training wheels balancing his bike, one hand on a bar, the other shooting his cowboy pistol. He wouldn’t wear the hat. Tchaikovsky’s Nutcracker played in the background. I fried bacon and scrambled eggs, hoping to take up a little room in their stomachs before they got to the stockings full of chocolate kisses. Our house played like a symphony, overtones and undertones, melodies of Christmas—a smorgasbord of the senses. The videotape ran to its end. A silence washed over all as the last gift lay unwrapped. The letdown of the holiday was almost too much to bear. We had to settle down with our toys, be content for another year with what we materially possessed. For the kids, it was a hard lesson to learn. I recall that I put Scotty down for a nap, but Paul had trouble sleeping. By that time, afternoon naps for Paul were hit or miss at best. I thought that if he could simply rest and slow the wheels of his brain, for just an hour, maybe he could regenerate and motor on at a steadier speed. But his behavior afterward, I see now, was ushered in by the Marauder. Paul did not act out; he shut down. This time, the Marauder was a thief stealing Paul’s communicative connections with his family—so valuable were the words, the hugs, the eye contact, bound up under the arms and cape of an insidious criminal. Whereas the early storms of fitful crying did much to rattle the nerves, this form, this scenario was raucous in its silence. To use a cliché, the silence was deafening. Instead of thunder, lightning, wind, and rain, we were in the apprehensive eye of the storm, aware of the outside whirl of damage the vortex would leave. The eye of a hurricane passes and then we face the spin and whirl, the debris, the mess. Paul didn’t speak for three days.

“Paul, do you want this cereal, or this one?” I asked as he plodded through the kitchen, barefoot and in his favorite too-small sweatpants. Paul stared into the cavern of our kitchen. His eyes, unmoved, seemed to focus on nothing, like a blind child. I chose the peanut butter crunch brand and guided his little shoulder to the table. Throughout the day, I asked him about his toys, what was his favorite, what he liked about them, and did he want to play outside. No response. He murmured, not completing a sentence, as if forming a thought and then losing it in an opaque fog, a cloudy Marauder. In fact, the toys sat ignored: the bike was parked shiny and new in the living room; the cowboy gun lay noiseless on the floor; the pirates on the ship were toppled over with holiday hangover. The toys served as evidence they were only as entertaining as the child who played with them. Paul moped around, blank. The house was too quiet. The second day, another day, devoid of words, I called, “Paul?” The kitchen was the same vast expanse of space. He was in the room with us, but didn’t hear me. I repeated his name a little louder. “Paul?” An invisible wall stood between my son and me. A third time, I shouted, “Paul!” He turned toward me, his eyes following as a delayed reaction. Rob cautioned me, “Honey, you’re not making it better.” I was incensed—it was like talking loudly to a person who doesn’t speak English—as if by yelling, he might hear. On the third day of what I call “The Grand Silence,” I gathered Paul next to me on the couch to read. Often, when I didn’t know what to do with my children, I resorted to praying, singing, or reading to them. Arbitrarily—really without much forethought, except that I chose pleasant singsong stories—I decided on Dr. Seuss’s One Fish, Two Fish, Red Fish, Blue Fish. The Marauder slunk slowly away. Even turmoil gets tired. Paul resurfaced gradually, as if he were waking from a fainting spell, regaining coherence, with more oxygen, and a more regular routine. But something was missing … missing … missing. Paul reemerged, but he was more sedate. Yet he was this way before Christmas. Christmas only brought out what I thought to be the true Paul. It was only a glimpse of what he could be. It was full-on Paul. The Paul before and after Christmas was half-throttle. Half with us; half engaged. Because our third son was born just ten days later, it is difficult for me to remember through the blur. But I know we eventually moved the bike out to the garage, and Paul rode it. He picked up the cowboy gun less frequently, pulling the trigger, tossing it to the floor when his need for the ka pow noise was fulfilled. The pirate ship served as a museum piece. If it were removed, it would have been missed, but for Paul to play with the action figures in a renegade scenario was just too neurologically typical. Just recently, I asked Paul about those lost three days. He doesn’t remember them. He remembers being really happy through the holiday, but then nothing. With much clarity, my twenty-seven-year-old son speaks of it like waking from a dream. “I was really happy, and then the presents were gone. And I got older and got used to the way it really is, that life isn’t Christmas. Life is normal.”

7

TRICKS + TREATS = THE DENTIST

“If you give a moose a muffin, he’ll want some jam to go with it…. Seeing the blackberries will remind him of her jam. He’ll probably ask you for some. And chances are … if you give him the jam, he’ll want a muffin to go with it.” —Laura Joffe Numeroff, If You Give a Moose a Muffin Paul was about four when we took him to Toys “R” Us. What torture for a kid to go in there and come out with nothing. I think I bought him a coloring book and a large box of crayons. What he desperately wanted was a T-Rex dinosaur toy. It was around $32. I thought that to spend that kind of money, it should be a special occasion, like a birthday or Christmas. He longed for it the way Sméagol longed for the One Ring of power. Haircuts, swimming lessons, doctor’s appointments, and going to the dentist involved a certain protocol for success. Because we were doing all these for the first time, we were just winging it, figuring out what worked as we went along. Success would mean we’d get the haircut, see the doctor, take the lesson, and get Paul’s teeth checked without any major scenes or meltdowns. Going to the dentist is one of those harrowing experiences, its stress level teetering between 9 and 10. I group it together with welcoming a new baby, swimming lessons, and potty training. Oh, and getting a haircut. Paul didn’t like strangers touching him. I think he thought it odd to have to lie down with his mouth open so that someone in a white lab coat could poke a metal instrument in his mouth to scrape his teeth free of tartar. I don’t know. It isn’t the sharpest memory I have about Paul. Every time I see that charcoal gray monster-size dinosaur toy, it takes me back to a parenting ploy, or maybe “trick” is a better word. I read so many parenting books. Some were on the lenient end of the discipline spectrum. Others swung way over to the other end, citing Bible verses about sparing the rod and spoiling the child. Strict lines must be drawn that the child must not cross, or the consequences would be severe. We sat somewhere in the middle. We loved our little men. We wanted to give them the best of everything, saying no only when necessary. That necessity depended on a whole set of values we were trying to teach. Sometimes ya just gotta say No. I figured I should say no once in a while, just because I could. It does no harm to be told no once in a while. They must not come to expect the best of the best all of the time. We wanted our children to be pleasant for others to be around too. I was still at that stage in my parenting vocation when I didn’t really know how easy other kids were, how compliant, how docile in comparison to mine. I had come to expect that almost everything with Paul was a battle to fight or an obstacle to climb over. Yet somehow, I didn’t think too hard about Scott going to the dentist. There was no bribery involved with Scott allowing the dentist to count his teeth. There was no drama with Scott. That’s probably why I don’t remember his first trip to the dentist. It was written all over Paul’s face, the anxiety. “No!” His voice trembled. His face contorted like a person who can’t swim, clutching white-knuckled on the tile edge, scared to death to push off from the wall to do a simple dog paddle. The unknown situation was too much for him. I did my best to explain the process. I read the Little Critter Book, Just Going to the Dentist, by Mercer Mayer. We sat on the couch and looked at the pictures, page by page, image by image. Maybe it was the little animals that didn’t convince Paul. They weren’t human. I told him, “The dentist will count your teeth, to see how many baby teeth you have. He’ll put some bubble gum toothpaste on a little scrubber tool and clean your teeth. I bet it will taste good.” “NO!” It came out like a terrified whine. I thought, What can I do? Bribery, yeah, that’s the answer. In this case, desperate situations called for drastic measures. It was time to get the big guns out. I consoled myself, rationalizing that Paul was too afraid to listen to reason. He needed an incentive to get through an ordeal. Paul was the mule nosing forward to the carrot on a stick—the T-Rex toy—while avoiding the whip of the stick behind—the dentist. “You can have whatever you want, Paul.” I actually said this. Probably the only time I’ve ever said that in my life. But you do what you have to do. Man, was that risky or what? All the ramifications of the consequences of me saying that came rushing forward. Do you know what you’re promising? What if it’s all too easy? What if something clicks in his memory and he demands a lollipop every time I want him do something? I’d have to toughen up and hold my ground and say, “Not this time.” But in this instance, I did know. I knew that for Paul, a large action figure T-Rex dinosaur toy meant everything in the world to him. Intuitively, I knew he’d go for it. “Oooookay,” he assented, as if he wasn’t quite sure, but well, a dinosaur

was worth the risk. And we got through it. Actually, in spite of all the hoopla beforehand, the experience was fairly smooth and uneventful. Thankfully I could just sit in the waiting room and flip through a magazine and stare at the fish aquarium. What a break. The dental assistant remarked, “He did just fine.” It worked. And as soon as the appointment was over, we scooted to Toys “R” Us. Paul got his dinosaur and he was happy. The dental assistant taught me that the best way to brush the kids’ teeth was to sit on the floor with the child’s head lying face-up between my legs. I then worked the toothbrush, looking at my cherub upside down. In this way I could get after the little cuspids, canine by canine. Simple, yet smart. We did this every night. Bath, teeth, stories, songs … repeat. When I put the toothbrush in Paul’s mouth, without fail, he would grab my hand, pull the brush out of his mouth, look at me, and announce, “Tastes like gum on it.” Then he could continue the ritual. It was automatic, like pushing a button. These little details, part of the routine, were necessary to a job well done. We had to do it. I don’t remember a thing about brushing the other kids’ teeth, but I know I did. The next time Paul went to the dentist, it wasn’t so hard. The reason I know this is because I don’t remember it. Never again have I said, “Whatever you want.” Because, honestly, I can’t make that promise.

8

ERRATIC LEARNING BEHAVIOR

“The voyage of the best ship is a zigzag line of a hundred tacks.” —Ralph Waldo Emerson, Self-Reliance and Other Essays I questioned. Why is everything so difficult? To save money for a while, we traded in our two compact vehicles for a minivan. I drove Rob to work to have the van and then picked him up at the end of the day. This was the time that we enrolled Paul in preschool three days a week, from nine until noon. His bright and sunny teacher Teresa said Paul was her favorite. She also thought he was painfully shy. Rob and I thought that the socialization would be good for Paul. It was, I suppose, but it’s hard to know. He didn’t mix with the other kids, but he did do the crafts and all the preschool activities, like coloring, cutting, pasting, and story time. Because it cost money for preschool and because of the hassle of getting Rob to work and Paul to school, then picking Paul up again at noon, preschool only lasted a few months. There was this nagging feeling that something was missing for him. Nobody could put their finger on it, and at the same time, we were trying to ignore it. Our extended family lived far away. When they did see Paul, they wanted to enjoy him, not give advice. I felt alone and fought with myself, trying to convince myself, as if it were just a case of mind over matter, that I really wasn’t alone or depressed. I tried to talk myself out of it. It felt a lot like fishing or putting a thousand-piece jigsaw puzzle together. After a while I wanted to quit, because no matter how many worms I hooked, nothing would bite. I just couldn’t match the jigsaw pieces with all their squiggly lines to each other. I didn’t know what we were facing and I was wary of early childhood detection measures. I was afraid of what they would find and even more afraid that they might not find anything, that life was just going to be difficult and dark, like a blind person having to compensate for what he couldn’t see. I took the boys outside to play a lot. Paul rode his bike, chanting some line from the Disney movie Aladdin aloud, repeating it over and over. “Excuse me! Are you looking at me? Did you rub my lamp? Did you wake me up? Did you bring me here? And all the sudden, you’re walking out on me? I don’t think so! Not right now! You’re gettin’ your wishes! So sit down!” It was spring and the mornings were warming up now. The school bus stopped at the corner to collect the neighborhood kids. It rumbled up to the stop, the red sign hinging outward, as the driver braked and swung the door open on its lever, the brakes releasing air, gas expelling. Kids launched up the steps onto the bus. I tried to picture Paul with a giant book bag on his back, managing such steep steps. It would have been like shoving a baby eagle out of the nest before his feathers grew in. My nerves shivered. I picked Scott up on my hip and shuttled Paul back into the house, our one-room schoolhouse. I began a heroic attempt at homeschooling. We experimented with a kindergarten curriculum and gained success with Paul in learning his colors, numbers, alphabet, and the sounds that letters make. A lot of my friends were homeschooling and were familiar with curriculum. I chose a traditional workbook series by a Mennonite company called Rod and Staff. The pages were simply designed, focusing on a simple concept on a white page with black lettering. I figured that the plainness of it was not so threatening to his system. I liked the modest dress of characters and the focus on basic letter, number, and shape formation. I sat Paul at the kitchen table with a box of crayons and we took it one row at a time. There might be a pattern page showing an example of a triangle, then a square, then a circle. Paul was then to follow in drawing what came next. He was four years old and struggled so much. What I saw as easy to understand was monumental to him. I exercised as much patience as I could muster to explain the direction, then give him a chance to work the problem, I would step away into the laundry room and fold clothes. I busied myself as much for my sanity as to let him figure it out. We did it together. I still have those five completed workbooks saved in a keepsake box. There also was a mothers’ support group I attended monthly. We had an early childhood expert come and give us the skinny on school readiness. I remember listening intently, having looked forward to hearing what it was that I needed to do. The expert was very encouraging and I took away some profound tips that influence my parenting even to this day. The first poignant thing he said was that an infant gets his self-esteem from how quickly and how interactive his mother is when changing his diapers. It made sense to me, and I was willing to be attentive and conscientious. Beyond that he said, “There are two things you mothers can do to ready your children for school. First, talk to your child all the time … about everything. Let him hear your voice. Feed him with words and inflection. Teach him a cookie recipe. Let him squish the dough between his fingers. Point to a bird, find out its name, and watch it fly. The second

thing is, read to your child.” I took this advice to heart. So that’s what we did. I always relayed information to Rob and he was always receptive and willing to do what was good for the children. He got down on the floor with them after work, growling, letting them climb on his back, helping me with all of it, bathing, eating, reading, singing lullabies. Most importantly, Paul knew stories. Paul loved fairy tales and fables, Dr. Seuss, and Disney characters. He memorized passages and sat with a book in his lap, staring at the pictures, parroting phrases and scenarios. There is an effective activity in the autism community called Social Stories that parents use to help their child with an upcoming event. The technique involves making a homemade book with pictures of the process of whatever it is the child is facing: a family vacation, a trip to the dentist, swimming lessons, or even trick-or-treating. We were not aware of that strategy yet. Nevertheless, my emphasis on reading to the kids helped tremendously, and one day, we reaped the benefits. Paul struggled with change, and adjusting to new clothing was particularly difficult. I bought a new coat for him when he was four. The colors were vivid and I thought he’d love it, but he wouldn’t have any part of it. The reds, greens, and blues shouted at him. Since he refused to wear the coat, I had to layer on long-sleeved shirts and sweaters that were becoming too small. I threw up my hands on the issue. Then summer rolled around, along with The Three Little Kittens. My son and I settled into the pretend tale with vintage soft pictures of kittens washing mittens. In his imagination, Paul leapt from mittens to his winter coat. He announced, “I want to wear my new coat.” It was ninety-plus degrees outside. I said, “You want your coat? Okay, let’s get your coat.” We put on his coat, opened the door to a wall of Tidewater heat, and ventured outside. Paul wandered around the front yard for a few minutes. That was enough to satisfy his adjustment to the new coat. I’m thinking that because it was summertime, there was no pressure on Paul to decide. It was easier for him to get used to the idea. The next winter, he wore the coat. I taught Paul to memorize the Pledge of Allegiance. He was five. His pronunciation and inflection were so on cue, it was poetic. He crossed his right palm over his heart, posture straight as a soldier’s, a grin wide across his face. He seemed to understand the salute and being American. When my husband came home from work that day, both Paul and I were eager for Rob to see what Paul could do. Paul came through. Rob beamed. Then, the next day, Paul didn’t know the Pledge of Allegiance at all. The Marauder had struck again. Paul gave the flag a passing glance. I asked him to get it for us, so we could start our school day. I threaded the dowel in his hand, and he dropped it irreverently to the floor. He was ambivalent, apathetic. His voice was murmuring, fading. I suggested that we say it together. I recited it alone. Paul stared, vacant. The only thing consistent about Paul’s progress was inconsistency.

I was curious. Paul’s behavior prodded me for answers. I wanted to know if I was crazy, if I was being too analytical, looking too hard for something to be wrong. I wanted to know what I could do to make things better and if what was “off” about Paul was only slightly off or very severe. I was searching for my son, both for his inner light and sight. As early as pregnancy, I was avid, a mother on a mission. I dog-eared pages in La Leche League books on breastfeeding as well as parenting manuals by Sears, Brazelton, and Spock. I was motivated to be the best mom I could. Now that Paul was well into his early childhood, I didn’t know why it was so difficult. How could I be trying so hard to be prepared and yet feel so lost in parenting? I’d thoroughly read one of the two books the library had on autism. It was downright frightening. Terribly outdated, but at the time (about 1992), only vague theories existed. It wasn’t common knowledge yet that autism was a spectrum disorder, varying from mild to severe. What I took away was that a person either had autism or didn’t. What I hoped was that since Paul wasn’t chewing on glass, climbing on the roof, or screaming 24/7, maybe he wasn’t autistic. Maybe I dismissed the subtleties of the reading, that there were lesser behaviors that still qualified as autistic, but my comprehension was, oh, he isn’t rocking and banging his head against the wall? Well then, he isn’t autistic. I literally avoided saying the word out loud. Avoided it like the plague. I once happened upon the Lifestyle section of the Virginian-Pilot newspaper. I read about a single mother and her son. The photo showed her sitting on a sofa with him—that’s what I remember. His head leaned on her shoulder. His eyes were vacant, rolled askance upward, as if looking at nothing. They both looked worn out—the mother with mothering, the son with blankness. Lord knows what they’d been through the day that photo was taken; a tantrum, a haywire day of sensory overload, I’m guessing. I read that he screamed often, didn’t speak, and was a danger to himself, property, and even his mom. He had sleeping problems, allergies, seizures, and violent physical fits. I was intrigued. I had to look at it, like passing a car wreck. You’re not sure you want to see, but you simply have to look. The people in the newspaper seemed far removed from me; I thought it not in my realm. They were different than me—like a Pharisee. Thank God I didn’t have those problems. But then I read, maybe in the same article (my memory is blurry), that parents of terminally ill children often fared better than those who parented autistic children. There was a higher and more critical degree of depression among these parents. Autism is so vast and vague that it’s not surprising that depression puddles like mud in parents with autistic children. Otherwise healthy, handsome children are acting out, screaming for relief from their sensory issues, seeking asylum from those around them, not knowing what will solve the problems or when it will end. At least with parents who had terminally ill children there was an end in sight, or so it seemed to me.

That may seem an awful comparison. I didn’t think then and I am not saying now that I’d rather have had a child with cystic fibrosis or cancer. But as I contemplated it then, autism seemed like a heavy cross that Paul and I and our family might be required to bear. Would I choose that if it were my choice to make? It scared my shoes off. Autism. I wasn’t expecting it. I wasn’t prepared.

It was time to get out of the house. Communing with another mom and her sons at the park was like a vacation day. After a stretch of fresh air with monkey bars, swings, peanut butter and jelly, and running free, we were rewarded with a solid block of afternoon nap time. I lived for it. By this time, I was pregnant with our fourth child, who was our first daughter, Danika. I remember the burden of my rotund bread in the oven and my conversation with my friend Denise. Denise and I spread out a quilt, suggesting strongly to the boys, “Go play.” When Denise and her two boys met us at the park, I’d had a morning already. I was exasperated and crying. Paul was agitated, demanding, and inconsolable, and there was nothing I could do about it. I yammered on to my friend about the impossibilities of dealing with Paul. How his vocabulary was limited and how he kept to himself. How he became volatile when a noise was too loud or when he didn’t get his way. Paul never seemed to get comfortable. Even now, sitting here typing this, I remember another trip to the park. I got there early before Denise could meet us and took the boys walking on a trail that meandered the perimeter along a waterway. I remember wearing Scotty on a front pack, letting him gnaw on an apple to ease the pain of teething. Paul was unengaged. I tried to point things out to him, like birds, pinecones, types of trees that were labeled with brass plates: pines, rhododendron, and sycamores. Paul didn’t run and jump. He loped along, pensive, then whining, autonomous. I often think that mothers and sons mirror each other in their moods, their pulse on the environment. I wondered if I was good for my son. I wondered if his restiveness was playing off of my depression. Were we just a back-and-forth reverberation of static non-energy? I talked on with Denise, venting (perhaps vomiting is a more precise word) all my misery and bewilderment on her shoulder. I felt unsure, as if I were taking a risk with our friendship. Would she understand, or would she be unable to handle my problems and begin to distance herself and not want to get together for playdates? I look back on it now and understand. It was scary for me to face, let alone letting a friend into my world, forcing her to ponder, what if it was her lot to bear? We were in the throes of our reproductive years. What if she were to give birth to a child with a disability? She looked at me in her usual way, compassionate, shaking her head, disconcerted. “Oh Susan, I don’t know how you do it. I don’t know if I could handle a kid like Paul.” She went very quiet. I wiped my eyes and sighed. She continued, “You know, I was praying about you the other day. I kept seeing a word in my mind’s eye … the word was autism.” I knew that was the word on the tip of her tongue. I knew it. But I didn’t want to hear it. The daylight left my body. I cried. I didn’t want Denise to be correct. The future stretched out on a foggy, unknown path. It seemed that I had all the time in the world to think about it.

9

JARRING CHANGE

“It is vain to say human beings ought to be satisfied with tranquility: they must have action; and they will make it if they cannot find it.” —Charlotte Brontë, Jane Eyre Looking back to our initial investigation, it is useful to disclose Paul’s bizarre behavior, painful as it is to revisit it. We had been living in a new house for four years. Our plot was located on the acreage of Etheridge Woods, farmland that had been sold to a developer to form a trite suburban neighborhood. Our house was like the rest, dressed in vinyl siding in a cookie-cutter community. Within those four years, we had brought home three newborns from the hospital: our Scott, Mark, and Danika. Our street ended in a culde-sac where the boys could ride their toys. The backyard was a generous half acre. Paul liked this house. Rob and I were feeling restless, disconnected, and boxed in, all at the same time. We lacked support. We thought that maybe we needed to move back to Portsmouth, near our friends we’d made when we first lived there. We welcomed a change in scenery—more like a reversion to something familiar. Also, it made sense for Rob’s job with a new game-publishing business. We would be closer to his warehouse. We sold this home and moved across town, back near the old place. The house was fifty years old, a dignified brick, original and different from every other house. Trees had established themselves decades ago, and in places, their roots pushed up the sidewalks and towered overhead for climbing and tire swings. Our home was one block from the Elizabeth River on one side, and on the other side, a block from High Street, the main busy road through Portsmouth, Virginia. Car horns, truck engines, and traffic could be heard all day long. Our backyard was two-thirds smaller than that of the other home and fenced in, with high wooden planks. Our bedroom was upstairs, the boys’ room far away downstairs. Because of the traffic, cars zoomed down our street, using it as a cut through. Also, with the river being so close, I didn’t want to take a chance of a drowning accident. We had more children, and I couldn’t be outside as often to supervise Paul. The backyard with the high wooden fence and the high child-safe latches gave Rob and me a little more peace of mind. No, the yard was not as big as the one at our previous house, but our little chicks were a bit safer from the fox. It seemed that everywhere Paul looked, nothing was the same. The noises, the shapes, the architecture, even the smells. His bike rode differently on the patch of cement on the side of the house. The street ended at a wide river, instead of a cozy cul-de-sac. The porch swing was replaced with a stationary stiff iron chair. His room was larger, yet more crowded. We took in a tenant to help me with housework. She lived down the hall from Paul and the boys. She was a kind family friend, but she wasn’t Mom. The change was dramatic for all of us. For Paul, it was catastrophic. He talked less. His speech became patchy. His vocabulary shrank into murmuring and choppy sentence fragments. He stammered on certain words and couldn’t pronounce them correctly. In a video we took of a Christmas there, Paul, age seven, walks on his toes around the living room with a red and green paper chain that we used to count down the days. Rob asks him, “Paul, what is that?” Paul moves the links up and down with each hand, like a marionette, and answers, “A change.” Rob coaxes, “An advent chain, Paul.” Paul repeats, “Ad-ment change.” Rob tries some more, to no avail. To Paul, it is a “change.” Paul often retreated to the upstairs family room alone. The gap widened between him and his younger brother, Scott. They didn’t play together. There were no toys littering the room, no evidence of boyhood mischief. He did keep a rubber snake toy with him, waving it and shaking it around as he sat on the sofa, crinkling his eyes on some distant thought, or as he walked around in circles on the carpet. I continued to homeschool, grabbing chunks of time to teach a letter here, number games there. We read aloud. We played outside a good bit. We went to the playground and the pool. But it just didn’t seem to be enough to keep Paul stimulated and engaged. Physically, his teeth grew in with a distorting overbite, allergies seemed to explode overnight, and he didn’t seem to grow. Rather than looking seven, he appeared younger. The Marauder snuck around, stealthy as a panther. Rob had recently started a new game publishing business. As I said before, his warehouse was located in Portsmouth. This was one of the reasons we moved from Chesapeake back to Portsmouth. He worked long hours and traveled a great deal more. That first summer, he was gone six weeks out of eight, exhibiting at trade shows and game conventions. One morning the downstairs smelled of urine. I looked underneath the boys’ beds to see if some training pants had been shoved there. I also went through the hamper, sniffing for wet clothes. Down the

hall in the bathroom, although little boys had missed their aim in the toilet bowl, cleaning that up didn’t fix the smell problem. When I say it stunk, I mean it was odious. A few days later, the boys’ lamp didn’t light. Changing the lightbulb didn’t work. I tugged the bureau away from the wall. The electrical outlet showed a layer of soot around the plug and there was a faint odor of wiry smoke. The carpet underneath was soaked with urine. Paul was urinating behind the furniture and also down the air-conditioning vents within the floor. He smelled like feces sometimes, and when asked if he washed his hands, he would answer, “Yeeeessss.” He’d draw it out with a deep bass tone. He spent a long time in the bathroom. “Paul, are you OK?” I opened the door and saw that he’d been playing with it. He squished it through his fingers. His underwear was soiled. In the bathtub, we scrubbed with soap and water. He wasn’t embarrassed. He sat absorbing the attention and the scolding. “You have to stop this,” I said. We had to pull up the carpet, leaving hardwood floors. We had the outlet fixed, thankful that we had avoided a house fire. Rob crawled under the house, removing the damaged ductwork and replacing it with new. This went on for a few months and required due diligence in preventing these occurrences before they happened. Paul needed a level of care that demanded more from me. The Marauder took on a foggy, moldy shadow, where Paul hid from all that assaulted him. We were running damage control. I tried to find the silver lining. At least he wasn’t climbing up on the roof, banging his head on the wall, or having seizures. The stress took its toll on all of us, but Paul seemed to bear the brunt of it. It was like all the new forms and changes seeped below his skin, and he tried to gain control by bizarre personal behavior. He was the sensitivity gauge for all of us, like looking at a thermometer. We could see, once again, the mercury rising to the top, about ready to burst blood red through a glass beaker. There were a few things that could enthrall Paul. One such event was birthday parties. He crept out of his shell for cake and ice cream, balloons, and “Happy Birthday.” It was a break, a vacation from the usual acute sensory stimulation. The sugar seemed to be the spoonful that helped ease the medicine of the everyday. Toward the end of a summer, I had a birthday. Rob was out of town, and our live-in friend, Peggy, bought me a cake. Paul stood by, licking his chops for the chocolate on top. Peggy said, “Let’s get a picture of the cake. Can you tip it for the camera?” It was a round, double-layered pile of much-needed decadence. I tilted it forward and it slid off and upside down onto the living room carpet. Paul gasped in horror as tears streamed down my face. I took the cake in both hands, flipping it right-side up back on the plate. That was the photo that was captured. Paul stood by me, his face half up, half down, confused, not knowing whether he should be happy or annoyed. He ate a princely slice of cake. Crumbs surrounded his mouth as he licked the icing off his fingers. With what he’d been through in the past several months, the dessert was due recompense. It is hard to recall how gradually things got better, how he stopped acting out, but he did stop. Once he got used to all the change, the bizarre behavior was no longer necessary. He settled himself by swinging in the backyard and running through the grass. We took walks, and he became more familiar with the trees lining the neighborhood and the briny smell of the river. We discovered a quaint footbridge near a small cove, where the boys threw pebbles in the water. Paul cycled through this season of his life, the jagged effect fading away as the change became more familiar, less threatening. He emerged a little older, a little more mature. The door of his life a little more open, ajar.

10

THE VERDICT

“Yet it would be your duty to bear it, if you could not avoid it: it is weak and silly to say you cannot bear what it is your fate to be required to bear.” —Charlotte Brontë, Jane Eyre It was one of those mornings. The kind when a verdict will be handed to you, deciding your future. You wonder if what you discern may be quite exaggerated. Perhaps an objective opinion or observation will prove you wrong, because what you feel, what you think, what you believe is almost more than you can handle. You hope against hope that the label, the diagnosis isn’t as bad as you dread—especially when it comes to your own son. You could actually handle it better if it were you, yourself. It is important for you to know, Dear Reader, where I was on this morning, what was going on, when the direction of my son’s life would be determined. I understand that turn in your brain, that wrench in your gut, when your child’s special problems become official. I know the load you bear. Here is mine … January 8, 1997 The Individual Education Plan (IEP) meeting is at ten a.m. Our son Paul is in first grade at John Tyler Elementary. He is already eight years old. He is also in the same classroom as his six-year-old brother, Scott. This is where he was placed after attending a half year at a private school in kindergarten. After homeschooling him since the age of four, his progress at a screeching halt, I thought it a good idea to place Paul in a classroom structure. He wasn’t yet reading and his speech was becoming increasingly fragmented and drifted. He just acted misty, fading away from us more and more. By the age of seven, he was stunted—stuck in the preschool level. When Paul and Scott headed off to school on the first day, it was hard to be hopeful about Paul. I knew Scott would fit in quite easily, but when it came to Paul, I pictured the teacher scribbling an exasperated note to me. I was correct. Paul and Scott came home and there it was: the note. “Paul doesn’t pay attention. He wouldn’t focus. He can’t follow simple instructions!” Did the teacher understand the blow that scrawling exclamation point would deliver? What a sinking feeling it would provoke? It was like the jagged guitar riff off the song “Creep” by Radiohead. It’s no wonder I like that song. The guitarist’s intention was to thrash—against it. He thought the song was no good, as opposed to the rest of the band. He rebelled, throwing a wrench into the symphonic machine. It’s how I see Paul, our chaotic world scraping a needle across a perfect vinyl record. Forever after, we’d endure (Paul would endure) skips on the otherwise beautiful music of the noise of life. That angry penmanship, slanted, sharp like knives, sliced further into my heart. My insides dropped and my pulse quickened. Have you, Dear Reader, experienced that? Paul is quiet. He didn’t bother anyone or distract the classroom environment. I’m guessing that when the teacher gave the instruction, “Take out your paper and write the letter ‘A’ across the row, then the lowercase ‘a’ on the second row,” her words got all jumbled up in his head. He couldn’t handle more than one direction at a time. If I were to say, “Paul, please take the bathroom trash out, put a new liner in the can, and wash your hands,” he might have said, “OK,” but something would get left off. So instead of making an attempt to write the letter A, Paul would take his paper and quietly slide it in the cavity under the desktop and just sit there, staring into space. After three days of notes, the teacher prompted the administration for thorough testing for Paul. Rob and I had already gathered that Paul was in the highest rated school district in regards to special education. We were advised by the previous private school headmistress. These were her words: “We cannot offer you a contract for first grade here. We simply do not have the services you need. We think Paul has a severe learning disability.” If you have been through this rigmarole of testing through the public school system, you know how the process crawls. We went in together, Rob and I. There were about ten knowing strangers. It all had come to a head. We sat around a conference table, and I sat there recalling the past eight years of Paul’s life. Their compassionate faces invoked in me a summoning. I saw the infant screaming and squalling, Paul clawing at himself when the TV screen messed up, his terror of a new heating and air system, his regressive toilet habits, his blank stares, his want for sameness. I heard his recitation of movie lines. Over and over, his repeating the last word in a sentence. That he couldn’t pronounce certain words, and slurred their ending consonants. His obsession with plastic dinosaurs, cartoon dinosaurs, dinosaur coloring books, and the

Halloween T-Rex costume that he wore often, even when it was two sizes too small for him. That he’d watch Peter Pan, the Disney movie, and amuse himself for hours, walking on his tiptoes, following his shadow around the walls of our playroom. I saw that he wore the green Godzilla T-shirt on Monday and the dinosaur shorts on Friday. That he didn’t speak for three days after Christmas, that he refused to roll somersaults at a gym class, that he had skipped crawling when he was a baby, that instead he dragged himself, like a frontline combat soldier, across the kitchen floor. That he fell a lot, not catching himself, smacking on pavement, and that his large motor skills seemed slow sometimes, like when he rode his bike, and dreamy, like when he meandered around the backyard, between the swing set and the pavement, waving a palm branch and gazing with a faraway look up into the sky, as if he were communicating with an imaginary friend. That he had an addiction to Cool Whip, and that he had a string of ear infections, and antibiotics to chase the germs away, that there was always a bottle of medicine on the kitchen windowsill. That he didn’t talk to other kids, that he didn’t care to interact. I felt parentally naked, and at fault. But I also felt like a victim of a crime. While we slept in the dark, unknowingly, the Marauder had broken into our home and stolen a piece of our son. Would that part of Paul ever return? Was ransom even an option? These people were specially trained to recognize symptoms and attach labels to these symptoms. They would know what to do. All we would have to do was sign a thousand papers to give them the okay to fix our son. I mostly surrendered to their compassion. Yet there was a resistant part of me that bristled in silence. Why do you think you know my son better than I do? Like a faded photo, their faces are a blur. It is a distant memory, twenty-some years ago. I think I’ve suppressed the memory, at least partially. I only remember the blanket explanation of the panel of tests they conducted. They found that on scales of one to ten, Paul reached a three or four, just under average, on just about everything. Simple was difficult for him. One young teacher, trained in special education, looked me in the eye. “Paul is precious, so cute, so pleasant. He is doing the best he can.” I thought, yes, that is the real Paul. She finally announced, “We believe your son is mildly autistic.” The most precise category they could slot him in had all these confusing letters. PDD-NOS: pervasive developmental disorder-not otherwise specified. The word that penetrated was “autistic,” but they weren’t done. Paul was also borderline mentally retarded with a below-average IQ. It’s hard to know if the autism clouded the IQ. Maybe Paul was above average, but because of the sensory issues, he couldn’t process or express on a competent level. I cried. Rob, my husband, my partner in crime, in love, in life, held my hand. At once, I wept for relief and burden. As for relief, I cried because we finally knew. As for burden, I cried because we finally knew. The signing began—an assembly line of papers for us to consent to the diagnosis and the permission to administer education that would fit. I couldn’t help but think that my signature released them from liability, and also that it further impressed that this was my responsibility, my husband’s. Like the title of a car, or a deed to a mortgage. We owned it. My husband thought: It was time to gird our loins and fight a hundred years’ war.

11

PAUL READS

“The love of learning, the sequestered nooks, and all the sweet serenity of books.” —Henry Wadsworth Longfellow Life lifted for a while. For one thing, Paul left for school at nine a.m. right in front of our house on his very own school bus. Looking back to that moment when I thought my son’s legs were too short for such steepness, I watched him walk out the front door as the bus braked in front of our house and happily skip across the lawn, his blond cowlick flapping in the wind, dance up those steps and take his place at the third-row window. He didn’t look at me to wave. I think the bus had only one other student to pick up. They would head toward a single portable classroom equipped with two highly trained teachers and five autistic children altogether. These teachers were trained under a program called TEACCH, started in 1972 at the University of North Carolina at Chapel Hill. UNC’s TEACCH Autism Program’s mission is to create and cultivate the development of exemplary community-based services, training programs, and research to enhance the quality of life for individuals with Autism Spectrum Disorder across their life spans. A compassionate, enthusiastic, and professional teacher named Andy Miller had a major impact on Paul’s learning and growth. I wish we’d kept in contact. The layout of the room was genius. Each child had his own cubicle—I remember that there were only boys. Since the room was a portable, up on cement blocks and set away from the noise and distractions of the main building, the environment was quiet and settling. They had special areas for specific activities, much like kindergarten. Paul caught on quickly and learned to read that second half of the school year. He received the attention he needed, supported with occupational therapy and speech therapy. He went on field trips and mainstreamed with the other students in Art, Music, PE, and lunch. He became less spacey; he didn’t drift off into loneliness as much. His solitary play in the backyard was more engaged, seeming to have more purpose. I think that some of this was due to being challenged at school so that by the time he returned home, he could relax and enjoy a break. Although Paul didn’t take to curling up in a corner with a good book entertaining himself for hours, he did get more out of the books we read together. He saw the words, connecting them within the context of the story aloud. The illustrations had more meaning. The bizarre behavior stopped. Paul’s new school gave him challenges to detract from the negative selfstimulating rancor. Paul was happy.

12

APPALACHIAN CULTURE SHOCK

“When a plunge is to be made into the water, it’s of no use lingering on the bank.” —Charles Dickens, David Copperfield My parents have a large cabin on seven hilly wooded acres in the far western part of North Carolina. Murphy: a smidgen of a corner of the state. You know the phrase “Murphy to Manteo”? Yes, that’s how far west. It borders Tennessee and the North Georgia mountains. When we lived in Virginia, we’d come to Murphy in the summers to swim in the lake, at a spot called Hangin’ Dog. Then we’d meander down the road a piece to Clay County and fish at a rainbow trout farm in Tusquittee, and ogle the waterfalls at Fires Creek (called Farz’s Crick by locals). After growing up in hot Florida, I couldn’t believe the temperature relief here in the mountains, especially at night. It was because of this that back before airconditioning, the wealthy Vanderbilts went highlands, building their castle/mansion in our western neck of the woods in Asheville. Also while on vacation, we took the kids on hikes at the Joyce Kilmer Memorial Forest in Robbinsville, Graham County, North Carolina, a preservation area of about 3,800 acres of 100 different species of trees that are around 400 years old. Some are twenty feet in circumference and one hundred feet tall. Graham County is also where the Jodie Foster movie Nell was filmed in 1994. Nell is portrayed as a kind of feral child, kept away from society by her reclusive grandmother. Though this is a dramatization of a marginal existence, a fringe, it alludes to a hermitic hideaway, a southern-squalor, keep-to-yourself, impoverished Appalachian backward existence that is eerily suggestive of life in rural reality. Interestingly enough, some infer that Nell lives on another fringe, or margin. She may be autistic and burrow somewhere near Asperger’s syndrome. Toward Robbinsville, leaning out over the gorge, there sits a huge boulder on a rare flat spot on the side of the road where an artist has painted the name NELL in a type of writing that a cave dweller would finger, using swipes of paint from wild berries in primitive lettering. Rob and I both had a romantic idea about living here, away from hustle and bustle—to join scenery, nature, and wildlife under the shelter of small-town life. We took a little piece of the mountains with us when we returned to Virginia Beach. A twig, a pinecone, the image of blue green waters of Lake Santeetlah. Wouldn’t it be cool to live in the mountains? We could use a little Mayberry. We were tired of tunnel traffic and car exhaust. As a family, we had a list of prerequisites. Did the school system have services for Paul? This was our top priority. There I was, standing in my dining room in Virginia, on the phone, digging for information. We were trying to decide between two counties. Which suited our needs best? Did they know anything about autism? I began the conversation with an elementary school principal in Cherokee County. “Hello, my name is Susan Anderson. I am calling from out of state. Our family will be relocating to your area this summer. I am looking at schooling for my children and am curious about special education.” I told her all about Paul, his diagnosis, his progress, his challenges. I then posed the question: “I know the law states that you are required to provide an education for every student, but given what I have told you about my son Paul, can you?” Pause. Cue the accent. “Waaalllll, we’re a rural area, and we do the best we caaannn.” The twang in her voice did little to boost her case. But maybe she intended that. On to the next one-stoplight town. I imagined a party line, where everyone in the community could hear our conversation. I wondered how fast news traveled in a country town. I reached an administrator for Clay County Schools. I didn’t tell her that I had already spoken with the lady in Cherokee County. I repeated my monologue, almost word for word. I posed the same question about Paul. Did they offer what he needed? This time there was no hesitation, but a 180-degree turn in response, compared to the other woman. “Absolutely!” she exclaimed. She was emphatic and professional. She described the high standards of the elementary school and the special education services. She boasted of the qualifications of the resource teachers and their devotion to the children and their field. I thanked her profusely and hung up.

I stood there, stock still in my dining room, letting the latest information sink deep. I couldn’t wait to tell Rob, but first I picked up a Clay County Chamber of Commerce brochure. Sitting on the couch under our picture window, viewing our established neighborhood street with its mature trees and sidewalks, I thought, it all comes to a screeching halt if there is no Catholic Church in Hayesville. Leafing through, I saw Immaculate Heart of Mary Catholic Church, Hayesville. I called Barbara G., who led the ladies guild, to do some nosing. I got the sense that my phone call was a rare thing. She was polite and I heard a northern tinge. Trying not to sound presumptive, snooping, I remember asking about CCD, Confraternity of Christian Doctrine, otherwise known as Sunday school. Barbara told me about Leslie Woody, the religious education director, who had six children. That was a good sign. “Hmmm, Woody,” I thought. I was getting the feeling that I wasn’t in Kansas anymore.

During our transition from the east coast of Virginia to the far west part of North Carolina, I packed up four of our then five kids in our minivan and took them to Tallahassee, Florida, to see my sister, while Rob moved all our stuff in a U-Haul in that long trek to the mountains. Paul stayed with my mom in Murphy because the long drive would have been difficult for him as well as his severe allergies to cats and dogs (my sister and brother-in-law had several pets). It’s one thing to vacation somewhere. It’s another to live there. Rob describes his trek from Virginia Beach to Murphy, North Carolina: “I was driving through Cherokee, with all the tourist places, and the old jalopies set on cement blocks in the yards, overgrown weeds, dilapidated shacks that people call their homes, riding the brakes on all the bendy hairpins, and I think I had a panic attack. I started sweating and my heart pounded. I thought, why am I moving my family out here? What have I done?” Now if you’ve met my Rob, you’ll pick up right away that there’s not a southern bone in his body, although he’s lived in the South most of his life. Buttoned in L.L. Bean plaids and Levi’s that he wears thin, working from sun to sun at building, coaching swimming, mentoring Paul, and keeping his wife happy. Although he’s patriotic, melting in with the American soup pot, he has a European persona. Rob is six foot one with an aquiline nose, stalwart gait, and broad shoulders. Not big on small talk, he usually fits his profound points into concise sentences that take up very little airtime. His incredible memory makes him come off as scholarly. He sprinkles in a bit of humor that shows those closest to him an affectionate side. For me, it has always made me feel like everything is going to be alright. Sometimes I hear him from another room, laughing at the television, and it comforts me. It tells me the world isn’t so heavy. It takes a while to get to know him, and when you do, you’re glad you have. His laconic speech and self-deprecating manner enable him to sum up a situation and nail it in one line. Rob encapsulates a quotation attributed to Albert Einstein: “If you can’t explain it simply, you don’t understand it well enough.” If Rob could visit anywhere in the world twice it would be London. He went there on business once, and came back having afternoon tea in a wingback chair for two weeks. His favorite movie is The Quiet Man with John Wayne and Maureen O’Hara. He would be perfectly at home conversing in a pub at Oxford with J. R. R. Tolkien, C. S. Lewis, G. K. Chesterton, and Dorothy Sayers, discussing Christian philosophy and its influence on literature. If I know him, he’d be doing most of the listening and inhaling inspiration. He’d apply it most humbly in how he relates to me, his children, his business colleagues, and his creative powers in playing guitar, fly-fishing, surfing, and expanding the Bible trading-card game he invented, Redemption. When Paul was born, and as he grew, it became obvious that he was Rob’s son. First in looks, as some would say around here. “Looks like his Daddy jest spit him out of his mouth.” Paul’s temperament, humor, and outlook are also uncannily similar to his dad’s. The apple doesn’t fall too far from the tree, as we say. And yes, Paul’s got his dad’s nose. Besides uprooting the family, there was also the gargantuan task of moving our game business. We took orders over the phone and fax, then shipped them out of our warehouse to most of our customers who were east of the Mississippi. One of the most important factors to the functionality of our business was that UPS ran their trucks over Franklin Mountain every day. That summer we moved into my parents’ second home, in the middle of the Smoky Mountains of North Carolina. We rented there for four months while we looked for our own place. Because this was in the neighboring county, we wouldn’t get fully planted in Clay County until we moved there. For these four months, we drove the boys to school on the old road winding through the mountains on one side and the river on the other, about thirteen miles. Let me tell you, the country mile is longer than the city mile. One green deciduous tree looked like the next. I’d look up the side of a mountain and see a steep curvy incline, practically like Jacob’s ladder to heaven. I wondered how on earth you’d get up if it snowed. You could just forget about it, if you didn’t have four-wheel drive. I imagined the kids learning to drive around here when they became teenagers. Did I mention Cherokee, North Carolina? There are places named Cherokee all over the South, counties and towns, but the authentic Native American tribal reservation is what I’m talking about. Cherokee High School was another school included in our conference. This is the area where some of the indigenous Cherokee settled, now known as the Eastern Band Cherokee, which our kids are required to learn about in their North Carolina social studies classes. I find the geography and how it relates to history fascinating. Robbinsville High School? Our kids compete against them too. Their cross-country course comes a close second in mud and guts to ours at the Chatuge Dam for Hayesville High School. The rigor of the altitude

and mountain running conditions our kids for competition across the state. We often win our regional and state championships because of the tough terrain. We boast that “West is Best.” We’ve grown familiar with some in Robbinsville. One family in particular says that because their dad was born and raised there, they have to ask if they’re related to peers in school if they have any inkling of courting. Many are cousins, not too far removed. Rob and I were pretty new converts to the Catholic faith, having joined the Church when we were thirty-three (we are the same age). That had been only a couple of years. I still wasn’t used to the wariness some Christians had with Catholics—I found it archaic and ignorant. But like every other social situation in my life, going way back to when I was a poor scrawny kid in South Florida, I pretended that I didn’t notice that people weren’t nice. I played dumb and assumed that everyone liked me. Why not? What did it hurt to be magnanimous? Where the jolt zaps hard is when I hear the whispers: “They ain’t Christians, they Catholic. They worship Mary.” I’m never ready for it. Slays me. Hits me right where it hurts, in the center of the chest. Being misunderstood is a part of being a Catholic Christian, I reckon. We’re in good company. Jesus is the most misunderstood human in history. Once our son Mark was skateboarding around the old courthouse centered in the middle of town, which we call the Square. He was hanging with his buddies, jumping stairs, doing kickflips and ollies, and a preacher man pulled up alongside them, inviting them to come to his youth group. Mark answered, “Well, I go to St. Francis in Blairsville.” “That’s Catholic, ain’t it?” As if it wasn’t a legitimate Christian church, more like a cult. “Why don’t you come to our youth group?” I don’t even know if Mark answered. If he did, he probably said, “No thanks.” A few years in, Rob rented space in our warehouse to another game company. The guy running that operation was a Mormon from Montana. He and his wife moved here to work as his father gradually handed the business down to him. He needed to hire a few people and summoned a few locals. One guy, curious about our Christian game and toy business, actually asked, “They go to Catholics, don’t they?”

I found out that if I’d lived in Hayesville when I went to high school in the early ’80s, I’d probably have driven a school bus when I was a senior. I heard from a neighbor who had an auto shop that back then, you might pass one car on the way to Murphy. The older road was called Old Highway 64, and it was curvier and narrower. There was no Walmart back then either. It took longer to drive to Atlanta as well, because there just weren’t the roads cutting through the mountains. I see why this place, simply because of geography, seems to be a place stopped in time, why it is still so remote. I didn’t expect the kudzu ivy to have such a dramatic effect on us. I pictured a quaintness, a hospitality from the local folk. What I found was a subtle underlying suspicion of outsiders. We were outsiders. They knew us before we arrived. We were practically celebrities. “Yeah, a man named Rob Anderson bought that building for a song, ya know, the ol’ Orbit building? Is he kin to the Andersons on Sweetwater Road?” I felt like I was in a movie. Clay County has about three last names. Families date back to the Civil War and the Trail of Tears, and the closest shopping mall is two hours away. In fact, the area is described as “Two Hours from Anywhere.” Folks drink sweet tea and Mountain Dew more than water, and it’s common to see a guy with dip in his cheek and a round Skoal tin in his back pocket. At first I thought the accent was a bit put on, but then I found out quicker than a bluetick can tree a raccoon that this is how it was, how it is, and how it will be. My parents were letting us live rent-free in their home while they were in Florida. Meanwhile, we looked for a house of our own to buy. We didn’t know anyone and learned that people stuck to their own as far as socializing. If we’d been Baptists, maybe we could’ve joined in on a potluck here and there, but not as Catholics. Most Catholics were old retirees called “half-backs.” They’d grown up and lived up north, got sick of the snow, moved to Florida, got sick of the heat, then moved halfway back to North Carolina. We also learned from the three last names on the roster that lineages reach way back and they like keeping to their own. They don’t need friends, because they’ve got plenty of cousins. I also found out that if you marry a local boy, you’re sewn inseam, like a new patch on a worn quilt. Certain families stick with certain families, and the county is lousy with churches. Clay County has a population of about 8,000. People pass land to their posterity like gossip over a split-rail fence. There is one elementary, one middle, and one high school for the whole county, and all three share the same campus. The graduating class is usually under ninety students, and kids takes turns having their pictures published in the town newspaper for athletic, academic, and civic accomplishments. As far as finding a job goes, people do what they can to stay here. Really the only place that employs a lot of people is the public school, and the one grocery store. There used to be industry years ago, like sewing factories where jeans and textiles were made. But NAFTA took care of that. That building that we bought? It used to be a sewing factory. More than once, we’ve had locals come in the front door looking for a job. One time, a man straight up asked, “How many people are you going to hire to fill up this building?” We were used to going places on the weekends. The Tidewater area of Virginia is a transient area with lots to do, festivals, and museums. There was always the mall, if all we wanted to do was take the kids to the food court. So many people are stationed there for the navy, from all over. They find ways to get out and mix because they’re far from their families. People can be friendlier when they need be. When I registered our children for school, I drove up a hill to a circular driveway. Petunias waved in a hot breeze circling an American flag; the heavy metal link chain clanged against the pole. You hear that

stuff when you feel that loneliness, the kind that closes in like a trapdoor. Cicadas buzzed a lazy cadence in the shrubs, and it all felt so Deep South landlocked. I was also pregnant with our youngest and sixth child. I was nauseous 24/7 and disoriented with all the changes in my life. Climbing the steps leading to the elementary school office, I noticed two people walking my way, one a teenage boy, the other his mother, probably a teacher too. The boy walked with a cowboy swagger and he was dressed as one from hat to boots. He wore a rebel flag belt buckle and camouflage shirt and jeans. I swear I saw his cheek bulging with chaw. His mother wore brown clipped hair and a denim jumper over a homely applepatterned blouse. I started sweating with anxiety, my stomach heaving. My imagination drifted to Florida, where I was used to, which made me feel all the more anxious and displaced. It was hard to suppress the gag reflex. Although I’d seen this sort of people in the Everglades among the airboats, alligators, and air plants, it didn’t really help. When I lived in Florida, I was never too far from the beach, if I needed to get away. This was a time in my life when I had to will myself with wisdom over feeling, mind over matter. Maybe the feelings would come later. Maybe the place would grow on me? I followed the sidewalk to what looked like an office (there were no signs) and somehow (I can’t remember how) found the teacher who Paul would have for home room. She seemed taken aback by my initiative, like I was a bit forward. It was just a feeling I had. Once she got past me, she turned out to be warm and welcoming toward Paul. She went to the dollar store and bought him some dinosaur toys.

As we commuted from Murphy to Hayesville Elementary every school day, living in my parents’ house, we searched for our own to buy. We needed something close to town, and something we could afford. We’d come from Virginia Beach, where houses are plenty and bought and sold all the time because it was a transient area. Hayesville is another story. Some houses are priced for the wealthy because many from Atlanta have second homes here. Typically in the fall and winter, there isn’t much on the market either. People wait for the spring to list their houses. We drove around with a realtor, avoiding the hilltop mountain retreats. We found a house down a dirt road about seven minutes from town and two miles from our warehouse. When the leaves have fallen, our warehouse can be seen from about a mile away. We walked up the driveway and the garage door was open. The house wasn’t locked. I turned around to see that there was no garage door. If we’d been in Florida, the garage would have been empty because everything would have been stolen. On the day of the walk-through, I expected the house to be clean. A fryer full of grease sat in the kitchen. On the back deck was a doghouse with a litter of puppies. Welcome to Hayesville. The sellers obliged in picking up the puppies, but there was a beagle they left behind. When we inquired why, they said that that dog didn’t belong to them; it was a stray they’d been feeding. We couldn’t get near him. He was shy. We ended up calling the animal shelter and borrowing a carrier to capture him. I brought him to the shelter and when I dropped him off, the shelter attendant said, “He’s a beagle. He’ll friendly up when he’s been here a little bit.” Rob likes to echo the adage on this subject: “If you feed it, it’s yours.” When we closed on the house, we had a garage door installed, rented a carpet shampooer, and scrubbed the place from top to bottom. Then we called in our priest and had the house blessed. We found out why the half-backs retreat to Florida in the winter, my parents among them. The trees are like spiders, the only lines breaking up a morose sky. Gray on gray. Frost laces the mountains, barren of leaves and birdsong. November was cold; the creek beds muddy, gelid; the temperature not low enough to snow, but drizzly and useless as far as having any fun was concerned. It was one of those in-between times, when you wonder what happened to summer, fall was just a flash of color, and you’re not quite ready for turkey or Christmas trees. That Sunday afternoon we all sat around the television, absorbing our Appalachian culture shock. We settled in to watch an old Gilligan’s Island. Ginger, the redheaded siren in the white sequined gown, is trying to convince naive Gilligan of something by seducing him, visually. Slinky music plays as the camera pans up Ginger’s figure from her pageant-posed high heels to her waved hairdo. She is strategically turned at an angle, and her one white pumped toe peeks from beneath the hem of her gown. Then Paul said, “She has only one foot?” Deadpan, perfectly matter of fact. He looked at me, puzzled, as tears of laughter streamed from my eyes. I was overdue for a good laugh. “Paul, you just can’t see the other shoe, because she is standing to the side. She is trying to look pretty to Gilligan. Women do that when they’re flirting or on stage.” That Leslie Woody person? She was introduced to Rob at the hardware. (That’s short for hardware store.) I think I first met Mrs. Woody at Mass. Head low, always solemn when she’s in the sanctuary—I didn’t know how close we’d become. She told me some time later that when I told her I was expecting our sixth that she was a little jealous. Imagine that from a woman who’d already had six and one in heaven. She found out soon that she was expecting too. We began a long, arduous friendship. Our trajectories ran parallel to one another; she coming from one place, me another, yet both heading in the same direction.

“Let those that are at peace with you be many, but let your advisers be one in a thousand. When you gain a friend, gain him through testing, and do not trust him hastily…. A faithful friend is a sturdy shelter; he that has found one has found a treasure. A faithful friend is an elixir of life; and those who fear the Lord will find him.” —Sirach 6:5–7, 14–16

We find that the only way to measure a friendship is through trials and time. Many mornings after the kids left for school, through the telephone line, Leslie and I drank coffee and shot the Shooting Creek breeze (Leslie’s neck of the woods) while doing laundry and matching the infinite socks. It would be about time to get off when I’d realize the clothes were dry. During our second trimesters, we ventured through Helen, Georgia, a touristy Bavarian alpine town on the way to Atlanta, to do some Christmas shopping. I’ll always remember rolling down the window and gasping for air, so I wouldn’t throw up. Talk about S-turns and carsickness. Leslie, the “Leadfoot.” We were just getting to know each other, yet there was a homey feel to us, like we’d always been known. Her father was a Hayesville born and bred, and her mother was from California. Leslie’s tongue strums a mountain twang once in a while; I sometimes hear it in the last word in a sentence. I’m sure the reason we connect is because she’s lived outside of the small world of Hayesville. She told me how she lived here from 1969 to 1975 and then moved to California for high school. Then she came back and married Denny, forever embedding in the red clay of the Apps. Leslie remembers helping out at the daycare in 1975 when the kids from Buck Creek, at the far end of the county, were bussed to school, stepping off barefoot. It had been the first time in their lives they’d seen a commode flush. When it came time to deliver my Bethany, who did I call to stay with the other babies? Yep, Leslie Woody. My mom was in Florida and I didn’t know anyone else. It was midnight when the contractions started. Rob and I shoved off in pitch black to Murphy Medical Center. I still wasn’t used to how dark it was at night. No streetlights, only stars to light the way. The darkness symbolic of how I was feeling. When we returned home with the baby, we came in showing our new bundle, and I laughed and teased Leslie, “Look, I’m skinny.” I walked her out to her Ford fifteen-passenger. She grabbed the steering wheel and stepped up on the running board to hoist her rotund belly into a bucket seat. Megan Woody was born two weeks later. After almost twenty years, Paul has lived most of his life here. He seems more grown up than he used to, but he seems to be standing still in some ways. The new home becomes the old home, and in a way, never aging. Autism is like that. The Appalachians are that way too.

CHAPTER 13

THE MIDDLE YEARS

“Bilbo rushed along the passage, very angry, and altogether bewildered and bewuthered—this was the most awkward Wednesday he ever remembered.” —J. R. R. Tolkien, The Hobbit When Paul was between ten and twelve years old, he’d be the first of our children to arrive home from school, skipping down our gravel road from the bus stop. The rest followed, dropping all belongings in piles by the door: book bags, shoes, and lunch boxes. No matter how much I nagged “Put your stuff away,” in their minds the mandatory rules and schedules ended with the last bell. Not Paul. He adhered to his own protocol, hanging up his backpack, walking to the kitchen to wash his hands like a surgeon, clicking his tongue, smacking the back of his hand into the other palm and grabbing a snack. Chips, crunch, crunch, crunch, the loudest ever heard. To this day, he likes his own noise. Here’s the thing. It is interesting that my neurotypical1 children may mix in a bit of logic in making decisions, but they give more consideration to their feelings than kids on the autism spectrum. The other five children hit the door after school and what did they do? They thought, “I’m tired,” thudding their weighted book bags in the front hallway. Then they’d grab a cookie and a drink and plop on the sofa, exhaling as they kicked off their shoes (forgetting that’s where they put them for next time). Not so with Paul. He lived in a grid of the game of Perfection, shoving geometric shapes into their slots before the annoying timer goes off. There was a lot to sort, and God forbid a piece was missing, or there was one too many. One jingle advertising Perfection is sung to the tune of “Pop Goes the Weasel”: Put the pieces into the slot make the right selection but be QUICK! You’re racing the clock POW! Pop goes Perfection! This piece here and that piece there Put those pieces EVERYWHERE! But be quick, or beware POW! Pop goes Perfection! He then proceeded back outside to pet the dogs. Back inside to wash again obsessively. Saving the best for last, he picked up his trusty stick. He’d found it in our woods, snapping it to just the right length, grooming it to smooth perfection, trimming it of all small appendages. He kept the same stick until it wore out. He began skipping up and down the fifty feet along our backyard deck, rapping the stick at intervals, pausing occasionally and taking the stick in both hands, tapping it with assiduousness in one place, small movements, tap, tap, tap! Then he’d move on. Oh, the noise! For hours it went on. It was this pattern he had, so eccentric. I’d never known any child to do this. When asked why he tapped a stick, Paul answered, “It relaxes me.” This is when we learned about the word “stimming.”2 He took the stick to school and rapped on a tree during recess. Returning to school the following fall, he saw that the tree was missing. He asked his teacher, “Where’s the tree?” His teacher replied, “The tree died, Paul. It had to be cut down.” He was around thirteen then, and took to bouncing a rubber ball instead. To his credit, he wasn’t totally wrapped up in his little world. He became aware that tapping a stick wasn’t typical behavior. There was still the stimulatory behavior, but by then it had morphed into what was more socially acceptable. All the kids in school knew Paul by then and had stopped asking, “Why does he do that?” He lingered alone at recess. It was where he was most comfortable. At the time, he didn’t talk too much about being lonely. I think he actually preferred the solitude in the middle of a day of middle school clamor. So many situations in Paul’s life seemed backward. He would go outside in freezing temperatures, without mittens, and his hands would be about frozen. For me, that would hurt. I’d feel frostbitten. Paul was past numb. But the load wasn’t always heavy. Paul made us laugh. His honesty in his words and facial expressions called us to account. He is unable to not tell the truth. In fact, Paul is the very elephant we all trip over in the middle of the room. It is his genuine perspective that reminds us all that we need to be real. Around

the dinner table, all facing one another at the end of a day, we truly see what each other’s state of being is. Here’s a funny scene. I’d come across a cookbook that informatively offered that organ meats are superior to other parts of cattle and are chock-full of vitamins and minerals. So I served up calves’ liver with mushrooms, onions, and gravy and tried to pass it off as steak. Steak is a big deal at our house. Everyone loves it. Paul was about eleven years old. Paul dug in with both hands, all chipper, with his head wagging back and forth in a sort of singsong dinner dance. He used a steak knife and speared a decent bite, swiping it well with gravy. Rob and I watched with interest. He began chewing heartily. All of a sudden, his taste buds absorbed the dry taste of liver, and his face stopped—stunned. He chewed slower. Then he swallowed. He looked at everyone else, picked up his plate with both hands, lifted it to his nose, and sniffed. “Is this really steak?” The cat was out of the bag. All the kids were on to it. Paul left half his liver on the plate, and we all had a good laugh. Of course, I never served liver again.

He adopted his own bedtime ritual. He had this need for familiar clothing, and the struggle with wearing new clothes. He wore pajamas that were too small. The cotton knit material formed to his body, like a glove. The hem of the pants came up high, the torso stretched tight around his rib cage. The sleeves gripped his arms. He then would pull on very snug tube socks. In one instant, I recalled Temple Grandin’s hugging machine, and it all made sense. Paul was creating a firm pressure to calm himself, so he could really rest. In the same way that Grandin found her own way to calm herself, Paul did too. Brilliant! Now, he still does this in a way—particularly when he’s upset. As an adult, he’ll get in bed, folding himself in a tight cocoon with his sheets and comforter. I’ll find him wrapped in swaddling clothes, lying in his cargo bed, sweating and sleeping.

Temple Grandin has become well known for her pioneer vision in animal science, but especially for her breakout story about growing up autistic and navigating the adult aspects of autism. Born in 1947, long before autism was an epidemic, Temple forged her way through childhood with only mainstream resources to become a courageous, intelligent, and contributing member of society, as well as an exemplary representative for the autism community. She has become a personification of the word autism and continues to be a spokesperson for autism awareness. As a teenager, Temple observed cattle being branded in a squeeze chute at a relative’s farm and noticed that they immediately calmed down after pressure was administered to them in the chute. Temple reasoned that the deep pressure from the chute led to an overall calming effect and thought it might be able to settle her “over-stimulated nerves.” She then built her own device which is referred to as the “Hug Box,” the “Hug Machine,” the “Squeeze Machine,” or the “Squeeze Box.” Temple still uses her “Hug Box” on a regular basis to provide her the necessary deep pressure to cope with her anxiety.3

It was rare that Paul won any kind of award. Team sports were too much for him. When we lived in Virginia when he was seven years old, we were able to get him involved in a baseball league for children with special needs. If a child was in a wheelchair, they would be pushed around the bases. If a child had Down syndrome, he or she would smile and hit the ball off of a tee and run around to home plate. If the child were autistic, we made modifications. There were no outs, and everyone took turns batting and running. If a ball was caught, that was a victory too. It was the only sport where getting a participation trophy was actually an accomplishment. It was called “Challenger Baseball.” A benefit of living here in the mountains is that in the summers, people flock here to vacation. Summer camps for kids abound in the far west part of North Carolina. We have one right here in the county called Truett Camp. It is a simple setting of a large pond, a swimming pool, and cabins, all nestled back off the beaten path of what we call town. It’s a Christian camp where campers stay overnight for almost a week and do the usual activities of arts and crafts, music ministry, marshmallow roasting, swimming, and even basketball and volleyball. There is also fishing. The Clay County Bass Fishermen held a contest for the campers one evening, while the fish were nibbling. Paul cast a rod out in the pond and ended up catching the largest trout at camp. When Rob and I came to pick up the boys at the end of the week, they put on a skit of worship songs. During the skit, Paul’s counselor was proud to inform us that Paul was awarded the fishing trophy. Wow. Thank you God for that.

“Cast your bread upon the surface on the waters, for you will find it after many days.” —Ecclesiastes 11:1 1 It is interesting that this word, neurotypical, originated between 1990 and 1995 and compares mainly autistic

individuals with non, as it reads in this definition: “pertaining to autistic persons whose neurological development and function is within the normal range; also called ‘neurologically typical.’” | “neurotypical.” Dictionary.com. Dictionary.com’s 21st Century Lexicon. Dictionary.com, LLC. http://www.dictionary.com/browse/neurotypical (accessed: November 2, 2017). 2 “Self-stimulatory behavior, also known as stimming and self-stimulation, is the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autism spectrum disorders.” | “Stimming.” Wikipedia. Wikipedia: The Free Encyclopedia. Wikimedia Foundation, Inc. https://en.wikipedia.org/wiki/Stimming (accessed November 12, 2017). 3 Stephen M. Edelson. “Temple Grandin’s ‘Hug Machine.’” Autism Spectrum Disorders: Fact Sheets. Synapse. AutismHelp.org. http://www.autism-help.org/points-grandin-hug-machine.htm (accessed November 12, 2017).

14

SCHOOL OF HARD KNOCKS

“Courage is fire, and bullying is smoke.” —Benjamin Disraeli A month or two after we’d moved here, I’d taken Paul to a birthday party at a classmate’s house. When the mother called me to come get him right away because he’d broken a front tooth in half on a trampoline edge (that wasn’t padded), I called our local dentist. He was the only one in the phone book for Hayesville at the time. He saw Paul at the end of the day as an emergency, thankfully. When I waddled, my pregnant belly preceding me, into the plush office with leather chairs, I wondered if he was he originally from here. By his accent, he was at least from North Carolina. I wrung my hands about what it would cost. I felt as if I looked barefoot and pregnant with all my brood tugging at my hems. I was also angry about Paul’s broken tooth, feeling harried and disheveled. We’d pulled up in our bursting-at-the-seams minivan. Southernly hospitable with his pearly white grin, Dr. H. took very good care of Paul’s tooth. He bonded it like it never even happened. Then he scanned all my kids’ faces and remarked, “Nobody’s gonna pick on this bunch.” I’ll never forget that he said that. It didn’t take nearly as long for Paul to assimilate into resource classes as when we lived in Virginia because his diagnosis of autism was already established. This was a big relief. Rob and I just had to figure out what we would do with Paul for the other seventeen hours of the day. The autistic behavior didn’t just go away, despite all the therapies we tried. Paul developed his own ways of coping and compensating for what his senses short-circuited. I don’t ever remember him coming home to complain about how he got picked on. For the most part, because Paul had brothers, he didn’t suffer too much grief from bullies, but that didn’t mean he didn’t suffer. It’s hard to recall these middle years. A few years ago, I asked my adult Paul and he told me of a situation in the cafeteria. “I was in the fourth grade. I had my lunch tray full of food. The cafeteria was crowded and noisy. I looked for a place to sit. I went to sit with some boys in a booth. There was an empty space on the end of the bench. The one boy put his hand up like this.” Paul motions, putting his hand out to the side, his fingers closed together in a tight palm shape. “On the other side of the bench, another boy did the same thing.” I think, Anything but a human hand. A baseball glove, a notebook, a smashed slice of pizza would have been a lot less rejecting than a hand gesturing, Not here. This seat is taken. Paul walked away and found a lonely seat at the end of a long table. Paul at twenty-four recalled it this way: “I have to learn who are my real friends, and who are not.” Paul then used logic. He figured that maybe he could gain a friend who was more in his league, like a special needs student. He found a kid who was also in resource classes and caught up with him and walked at his side, like a shadow during recess one day. But Paul is silent when he’s trying to figure things out, reading the cues of a friend. To be that quiet makes the other feel uncomfortable. The kid was annoyed. He said, “Quit following me around.” Again, Paul just walked away. There are no rules against rejection. I’ll say this for that faceless Marauder who rejected Paul. He was right on cue with body language. No words were necessary to be effective. Paul’s deep spiritual intuition as the medium had no trouble decoding the message. Paul was quiet and had a deep voice. He carried himself well. I knew that would help him. He would not leave himself open for too much ridicule. But there was still a lot of work to be done for our son. Given that he was on the mild to moderate end of the autism spectrum, by making a few modifications, we tried to expect as much from Paul as we did our other children. Part of it was the pursuing of that special niche everybody and their uncle suggests when they hear of an autistic child. “Oh, he must be good at math.” “What is it he likes to do?” “I bet he’s a genius with history.” “He’s probably smarter than the rest of us.” I hate that sort of placating. People mean well, but they really don’t have a clue. Rob and I were on a mission to find what Paul was good at. We taught him to ride a bike. Taught him how to swim. Read him a thousand and one stories, just like the rest of our children. We enrolled him in

piano lessons. We also had him become an altar server along with Mark and Scott. Our priest Father Wise has often remarked, “Paul was the best altar server we’ve ever had.” You’ll read later what his special talent was. We had work to do. Bullying didn’t fit in the schedule. But then, in the unlikely place of the school bus, Paul found a friend—a boy who wore glasses, a little lacking in social sophistication, five years younger than Paul. They traded Charlie Brown jokes. This kid, Harrison, idolized Paul. One afternoon Paul got up when the bus stopped to let the kids off. “Paul Anderson, Paul Anderson! You forgot your lunch box.” Harrison didn’t care about fitting in, or how he would appear uncool to the others. He also had special needs. I think he had Asperger’s. He wanted a friend too. Of course, it wasn’t as easy as two boys mutually sharing friendship. Paul had expectations of what friendship should be. He thought like many neurotypical children. There is a pecking order. Certain groups are more sophisticated than others. He wanted to fit in those groups. He was kind of snobby that way. The students in his special education classes were okay, but the distortion of physical features repelled him. He didn’t want to be associated with people with disabilities. It was a tough place to be for him. He could have succeeded in some arenas, like Special Olympics, yet he didn’t want to be categorized as “special.” Growing up with handsome, smart, and socially adept brothers didn’t help. Everything seemed to come so easy for our other two sons. The gaps were widening between Paul and his siblings. The older he got, the worse it got; the resentment, the contempt. Scott and Mark made halfhearted attempts at gaining Paul’s attention and brotherliness, but underneath, the shield of glass was just too thick. Paul was on the outside looking in. They knew it, and it made them feel bad, so their efforts waned into almost nonexistence. They had their own growing up to do. There are all kinds of anti-bullying campaigns going on now, but they don’t go beyond shaking a finger at a villain. But that’s another discussion. As I’ve learned with so many issues; I can only control what I can control. Learning from being bullied when I was a kid (and who hasn’t been?), I was going to equip my kids to be confident in their own talents and accomplishments, so they wouldn’t get picked on. Bullies smell timidity, like a shark smells blood. I really don’t think that bullies listen to campaigns. They hear strength and confidence. Maybe the reason there is so much bullying is because parents aren’t parenting their children. We don’t require enough from them. We allow them to quit. We hand them trophies, phones, and all sorts of glittering prizes. We forget that we had to pay our dues when we were young. They do too. We make the mistake of treating them as equals. The trouble is we skip over that crucial part of development, having to wait and work for what you want. How do they learn to problem solve if there are never any problems? How can they build true self-esteem and confidence if we don’t allow them to struggle and achieve a true result? I’m also a firm believer in raising our children with faith. We are doing them a grave disservice by letting them figure it out later. Children need direction, and they need it right away, while their brains are forming. Moreover, I believe that all of us have crosses to carry in this life. In The Imitation of Christ, Thomas à Kempis writes, If indeed there had been anything better and more profitable to the health of men than to suffer, Christ would surely have shown it by word and example. For both the disciples who followed Him, and all who desire to follow Him, He plainly exhorteth to bear their cross, and saith, If any man will come after Me, let him deny himself and take up his cross, and follow Me. So now that we have thoroughly read and studied all things, let us hear the conclusion of the whole matter. We must through much tribulation enter into the kingdom of God.4 I learned at age ten that I didn’t have to be picked on at school. In Florida in 1975, in the throes of desegregation, the powers that be had us bussed across town to a school into a ghetto neighborhood, even though there was a perfectly good school across the street from our apartment. A knock-kneed bully girl in tattered clothes was mocking and poking me on the handball court every day for almost a week. I don’t know what got into me that fifth day, but that sweet skinny blond pigtailed girl with the buck teeth shoved her back, hard. She never bothered me again. Learning from my own experience, I taught my children to be strong, confident, and willing to defend themselves. I wanted to help our children discover their gifts and talents. I knew that playing a musical instrument, being an athlete, or practicing dance three and four times a week would keep them busy and work on their character. There would be no time for being bullied or bullying. I imagine that some would say that we need to teach our children kindness. Well, yes—but isn’t that a given? Again, it comes back to the parents, stepping in and parenting. Paying attention on all fronts. I made lunches in the morning, assembly-line style, working like an I Love Lucy episode. I’d walk out to the driveway in my robe and slippers, no matter the weather. I did a dance in the driveway as Rob backed the car down our hill, minding the ditch, as the kids waved and laughed me off. When they pulled up to the elementary school, Rob reminded them, “Be nice to somebody who needs it.” As I said, we tried to teach Paul to manage. We didn’t encourage him to fight. We didn’t talk about it. Instinctively, we knew that if Paul had respect for himself, then he would have respect for others. Chad Woody shared a memory of Paul from the sixth grade. Paul and Chad sang in chorus, an elective they took after lunch. There was a boy named Chase who was about a foot shorter than Paul, but a real scrapper. The kind that moves like the wind and runs away just as fast. I think he was probably tired of getting patted on the head (that’s what I’d heard), so he had a need to make himself look big. Chad said that he was provoking Paul, thinking Paul would be intimidated. Maybe it was the autism, but Paul wasn’t picking up on Chase being antagonistic. Paul wasn’t afraid.

Chase put his fists up and said, “C’mon Paul, let’s fight.” Paul put up his fists, looked way down at Chase, and said, “OK, little buddy, let’s see what you got.” Chase dropped his arms, dropped his chin, and gave up the fight—or really, the bullying. Paul called his bluff, and Chase didn’t expect it. Everyone laughed. And that was the end of that. 4 From Thomas à Kempis. The Imitation of Christ. (Tustin, CA: Xist Publishing, 2015). eBook.

15

THINGS WE TRIED

“To do is to be.” —Friedrich Nietzsche “To be is to do.” —Immanuel Kant “Scooby do be do” —Scooby Doo “Do something every day that you don’t want to do; this is the golden rule for acquiring the habit of doing your duty without pain.” —Mark Twain What to do with Paul on all fronts—academic, social, physical, and medical—was a murky puddle. Rob and I were willing to try anything. I’d heard of special diets, behavior therapies, and even Suzuki violin lessons producing miraculous results. Paul’s occupational therapist at school recommended vision therapy, a supervised, individualized treatment program designed to correct visual-motor and/or perceptual-cognitive deficiencies. There are myriad exercises, both visual and manipulative, that encourage the student to meet these ends. The Optometrists Network website includes thorough information and resources for these therapies and how they help children on the autism spectrum.5 We were advised to go once a week; twice a week would be even more advantageous. Because of where we live, it just wasn’t possible. The visual therapist was in Chattanooga, two hours away. We made it every two weeks. We’d venture through the Ocoee National Forest, the site of the 1996 Olympics for white-water kayaking. We’d eat lunch on the way. During the scenic drive, we’d spot peculiar sights: wildlife, mountains, and a van in the middle of a meadow, blasted right out of the ’70s, from Scooby Doo. It was the Mystery Machine. We stopped once to take a picture. The vision therapy was thorough, but it was difficult to measure its positive effect on Paul. If we’d gone once or twice a week (as advised), we might have been able to see real progress. But like so many other remedies we tried, we couldn’t be sure of success. Therapies required that we be perfect and adhere to the standards of consistency. I chided myself for not being a purist. I often reasoned that because the gluten-free diets (which were more difficult to stick with back then in 2002–2004) required too much of us as a family, that that was not the solution to Paul’s problems. If it were the right remedy, why would it be so demanding of our time, money, and energy? Certainly miracles were easier than that. Paul did his best to fit in by what he wore. He insisted on slouchy socks and sneakers. He would purposely shove the white elastic down around his ankles to create that “cool” look. Somehow, it was the feet that Paul noticed. The faces may have been too confusing; hairstyles and acne repulsed him. I remember now that it took about six months for me to teach him how to wash his face. It was also the time for orthodontics, for him and for others. So many kids didn’t know how to keep their teeth clean. I’d see Paul wince at the sight of it. In the midst of figuring out what might work for Paul, I discovered piano lessons. It seemed to be the perfect answer. He would attend a lesson once a week and practice at home. Most of his work would not require him to go anywhere, and he would be alone, not interacting with anything other than the instrument. Paul advanced with an incredible teacher who had the ability to bring out the best of Paul, to reach that inner musician. He played rather perfunctorily—I couldn’t tell whether he enjoyed the music or if he just did it because he was told it would make him smart. If Paul was advised that something was good for him, whether it be food, medicine, exercise, worshiping God, or some sort of discipline, he would do it. He was trusting and obedient that way. There was a humor and intelligence about his playing. Not only did his reading level climb three grades within one year, but he also performed in a spring recital. Dressed in a tie and khakis, he played “The Pink Panther Theme” by Henry Mancini on a grand piano. To top off the rendition, he donned a masquerade mask to seal the disguise. It was remarked by one of our friends and dentist, Dr. H., “That mask showed his personality.”

I have a friend who is an avid horse lover. I grew up around girls like her in Plantation, Florida. There was a kindred connection they had with their horses. I knew the calming effect horses had on kids on the spectrum. At the time, a new trendy therapy for children with special needs called hippotherapy was becoming popular. This friend, Denise, had a black pony named Elvis that the kids all took turns riding. There was a mare, a sorrel and white paint named Snicker, aptly named after the candy bar. Denise’s way of saying the word “pasture” took me back to those salad days of my adolescence, when we hopped swimming pools, climbed trees, and rode horses bareback. I wanted my kids to have those memories. Denise had two sons who tromped around in their boots, at home with the horses, dogs, and chickens. She remembers my brood in tow with me pushing Bethany in the stroller around her property. I’d forgotten that, and when it came streaming back to me, like a rill trickling through the cobbles of my memory, I also remembered the rubber wheels of the stroller, struggling over gravel, Bethany’s chubby little legs bouncing against the canvas. My older daughter Katie climbed fences and fed the horses carrots and apples, holding her little palm out flat, like a saucer. Denise keenly recalls Paul loping around with a stick in his hand, tapping it on the fences, on his hand, on whatever would cooperate. Denise helped me fill in the blanks with Paul’s experience. “He liked being there. He seemed more to enjoy grooming the horses than riding them.” I could once again picture Paul with the brush in his hand, stroking rhythmically, as much for himself as the horse. He was brave mounting Snicker. Wearing a helmet, he reached the left leg into the stirrup, gripped the saddle horn, and with his left hand swung his long right leg over her back, settling into the seat. His eyes were wide and courageous. Mounting the horse was half of it. Snicker was like a mother, letting him think he was guiding her, giving him confidence in his leading her with the reins. Paul communicated an intuition, horse-whispering her into a trot. Around the same time, we thought it might be good to get a dog for Paul. We had a few things to consider. One formidable issue was that Rob had severe allergies to animals that clean themselves. It was the protein in the saliva that made him sneeze, wheeze, and swell. This meant that the dog would have to live outside, always. Just when you’re looking around, sometimes what you’re looking for falls right in your lap. We had friends who were moving across town and needed to get rid of a couple of dogs. Two were a mother and a daughter, a chow/golden retriever mix. “We know you want a dog, but these two come as a pair. Will you take both?” We didn’t have much time to think. Familial, furry, and friendly made it impossible to say no. The chow made them loyal. The golden made them affectionate. They were a perfect mutt mix. Cleo was the mom, except we pictured a much daintier breed, like a poodle or a lapdog. She looked more like Nana from Peter Pan. Terra-cotta coloring, burly chest, halfway between a lion and a teddy bear, we loved her. With demure eyes, the chow in her gave her a submissive, downcast look. Lucky, the daughter, was named for surviving a near-drowning as a puppy. She was much more spirited, agile, waggy, with a galloping gait and smiley muzzle. She had a few black spots on her tongue, showing the chow breed, but her amiable nature was all golden retriever. They waited at the bottom of the driveway for the kids as they got off the school bus. They barked half the night sometimes, keeping away raccoons and bears. Cleo had this bellow of a bark, like an old grandma. Lucky’s was more like a guarding German shepherd. Paul took to both of them, responding to each as her personality dictated. He fed, watered, and played with them more than the other kids. They were his company while outside. Paul imitated Mama Dog’s bark to a T. We’d ask him, the way we’d ask him to recite movie lines, “Paul, bark like Cleo?” He’d do it, grinning and smirking first. We got the sense that he liked that we got a kick out of asking him. Cupping his hand to his mouth, like a cave, he deepened the sound, like a mute used in a trombone, making it grumbly. Recalling their distinctions, Paul said, “Sometimes Lucky and Cleo would bark all night. Lucky would go like this, ‘Ruff—ruff, ruff-ruff,’ Paul’s imitations sharp, loud, and short. “Then Cleo, ‘Rrrhhgh … rarrr, raaarrrr, rrrhhgh, rarrrrr …’” Almost like an old engine trying to crank. We were taking a long drive to Nashville, talking about it. “Yes. What were the movies where the dogs talked to each other at night?” I asked. Bethany and Paul listed them. “Lady and the Tramp, 101 Dalmatians, All Dogs Go To Heaven, and Oliver & Company.” “Yeah, like that!” I said.

The next thing we tried we discovered kind of by accident. It deserves its own chapter. Like most things, it takes practice to get good at it. Like most endeavors worth refining, there are good days and bad days. And as with most arts, sports, games, or skills, it builds character. Sometimes it takes a while to find your niche. Isn’t that right, Nietzsche? 5 To learn more, visit: http://www.visiontherapystories.org/vision_autism.html.

16

RUNNING

“Though young men faint and grow weary, and youths stagger and fall, they that hope in the Lord will renew their strength, they will soar as with eagles’ wings; They will run and not grow weary, walk and not grow faint.” —Isaiah 40:30–31 While our two other sons competed in baseball, football, and basketball, Paul found these sports daunting. We needed to find something for Paul, something athletic. Rob called to Paul, telling him to put on shorts and sneakers. “Be sure to wear socks,” Rob said. “You don’t want blisters.” They ventured out to a road called Sweetwater Bend. Bend is a charitable word for all the twists and turns of this course. It includes a spot we coined our own Heartbreak Hill, a snake-like vertical climb that takes all the energy reserves one can muster for hiking, let alone running. Paul took off. He was fifteen years old. Rob thought it might help Paul burn some energy. He didn’t know that Paul would be fast—so fast that Rob lost sight of him. When telling the story, Rob often will reminisce, “I couldn’t catch Paul if he had a hundred-dollar bill taped to his back.” Rob had to yell ahead so that Paul could hear him. His voice echoed through the woods, calling up the winding path. Up ahead, as the road curved, Rob could see Paul making his way around the turn, and he yelled, “Paul, turn around! Come back!” Paul was well on his way, forging a journey of running. In 2006, when Paul was in the ninth grade, he joined the cross-country team at the high school. The coach was a crotchety old cigarette smoker named Buck Carney. Borrowing from his days as a football player, he barked orders, drawing the best from his runners. A man with a simple, tough exterior, all he required was punctuality, decent sneakers, and an attitude of mud and guts. Buck was especially good with underprivileged and special needs kids, the kids who couldn’t make the ball teams. His technique for these was a stoic command of the post. “Just let ’em run.” We heard this often. His rough edges were only a façade for the soft spot he had for at-risk teens. He drove a rickety small pickup, held together by rust. Rob reminded me that he had weeds growing in the bed of it! The yellow cooler with the red top sloshed on the tailgate, as Carney drove to the end of the course to meet the kids. He’d lean against its side, yelling, “Run! My grandma runs faster than that, and she died thirty years ago!” Somehow it worked. He was basic. He understood that pushing the kids past the point of what they thought possible would motivate them toward championship. Beyond that, the running itself would help mold them into decent people. Paul ran in step with Carney’s method. Being a part of a challenging group of athletes was exactly what Paul needed. Carney knew Paul could do it. When I expressed concern over Paul getting lost on the trail, Buck chided me, “You’re his mother. That’s your job, to worry. Just let him run. He’ll be okay.” Did Paul get lost on the trail? Yes, a few times. It wasn’t a big deal. He’d find his way back and often was still ahead of most. He’d take a deep breath, look around, notice a 5K sign or an arrow on a poster board, and get back on track. What Paul wasn’t expecting when he discovered his talent was how difficult the discipline would be, how much it would require of him. He ran his first official race and he said, “I don’t like people beating me!” He also lamented that breathing hard wasn’t fun. It was painful. He thought that being talented meant that he would just breeze through the paces. That just because running was a gift, a grace, that it would be that easy; so easy that he wouldn’t have to work at it. When he first started running for the high school, he was already sixteen years old and in the ninth grade; he was always two years behind since the start of his formal schooling in the first grade, when we found out the official name for his sensory issues. Paul was not a savant. Instead, he worked incredibly hard at the regular stuff, the taking in of information. He ground through the everyday. He had the constant battle of sensory deprivation, and then filled these needs by overcompensating. For instance, when he washed his hands, he pumped the soap about eight times. He bought sixty-four ounces of laundry detergent every week. He was addicted to white sugar. Even though some of these idiosyncrasies have improved over time, he still suddenly gets angry over a negative old memory, sparking a stimming spell, in which he slams his fist on a table or a wall. I often have to send him outside. Here it is in real time: He’ll walk outside, gain his footing on the lawn of our front yard, jump in place, raising his hand up like a crank, and slam it down on the other palm. The positive aspect is that he

doesn’t take his frustration out on people physically. He expresses his rancor verbally, and when it comes down to it, he wouldn’t hurt anyone. While running hasn’t solved all of Paul’s problems, it has helped. It burns off internal toxins. It wears him out, so he can sleep at night. He has learned to funnel through a tight space, with ten other runners competing for the finish line. He deals with anxiety, that prerace adrenaline that requires fight or flight. Paul chooses fight. He’s physically coordinated, and this is most certainly attributed to running. Running has helped Paul leap to other athletic disciplines, like mountain biking, shooting baskets, weight lifting, swimming, and martial arts. Paul has discovered his special gift. Running is his realm. As for the Marauder, he doesn’t come around as often anymore. He’s like a bully. When Paul is hard at work, athletically, the Marauder doesn’t bother him. Paul doesn’t have time to be bothered. He’s gained an incredible amount of confidence, and the Marauder knows he can’t get to Paul as easily as in the past. His teammates encouraged him. They were proud. In 2008, our three sons were all on the same crosscountry team for Hayesville High School. They advanced to the state championship and won first place for 1A high schools in North Carolina. All three received state rings. Paul was in his last year of athletic eligibility; Scott was a junior; Mark was a freshman. A couple of years later, we enrolled Paul in a college experience. There will be more about that later. He kept running in his back pocket. Following is a memory he carries from that time. Back in 2011, when I was a freshman at UNC @ Greensboro, I went for a run around the campus and then through town. I got lost and asked someone in a car if he would give me a ride back to the school. He said no, that he had so many things to do, but he said, follow this road, like this, [Paul raised his hand, fingers together, wrist straight, gesturing like a traffic cop]. I stayed on the road and saw a policeman and asked him. He said that he first had to check me for weapons. All I had was my keys. Then he said I could get in the car. He got me to the baseball fields at school—baseball and soccer fields. He said I could look at the map on campus, that that was as far as he could take me. I didn’t look at the map, but I figured out where I was and I ran back to my apartment. Paul runs consistently. When he is in training mode, he runs nine miles every other day. The days he runs are good days. His mood is mostly even keeled. The routine orders his eating habits and sleeping patterns. It takes up time and burns negative energy. It settles him all the way around. He ran his first half-marathon (13.1 miles) on April 6, 2014. He placed third overall with a time of one hour and thirty-eight minutes. He’s matured. He keeps running, and he is now setting his sights on training for a marathon. All of us in the family have joined Paul in running. We log many miles. Our soles wear out, the treads scrubbed smooth from climbing and descending hills. The glue unsticks and the stitching unravels. The old shoes become relegated to the garage to wear for hiking down to the river, protecting from rocks, and snakes, and mowing grass. They are a happy pile of reminders of long-gone days of cross-country meets during high school, and the memorable training runs through all kinds of acreage in this county. We tap them at the heels on the cement, loosening any spiderwebs and their inhabitants. Now worn, the bottom treads are a slick, mossy green as they dutifully follow the hungry, noisy lawn mower. Paul gets the credit for that, the attribution that we all cope with our problems pounding the pavement to work them out. We all have our races to run. I wish we’d kept those first sneakers that Paul wore. If he’s bought one pair, he’s bought a hundred. Paul looks back on those days like a kid looks back on kindergarten. He’s come that far. I asked him, “What do you remember about that first time you ran?” “I was fast.”

17

RUNNING WITH THE BROTHERS GRIM

“Yeah, runnin’ down a dream that never would come to me, workin’ on a mystery, goin’ wherever it leads …” —Tom Petty and the Heartbreakers, “Runnin’ Down a Dream” Paul ran track as well as cross-country. Whereas cross-country requires mud and guts and trucking through woods, rocks, and all kinds of weather, track demands a NASCAR-type motoring. A mile around a black asphalt raceway can be a little monotonous and pounding. There isn’t the variation and scenery that he enjoys with cross-country. A mile on a track seems farther than a country mile trek on a mossy path. Cross-country races start on time and last about twenty minutes. Track meets with all the events last all afternoon. Because of the autism, Paul preferred the solitude of a cross-country race rather than the constant starting-gun shots, noise, crowds, and chaos of track meets. Although he didn’t enjoy track, still he ran. What he loathed was his brothers Scott and Mark running faster than him. Scott isn’t built like a runner. He’s stocky like a football player, but because he was a little burned out playing for a losing team and the runners seemed to have so much more camaraderie, Scott went out for the cross-country and track teams one year instead of football. He huffed and puffed, heavy footed, his running gait clunky, but he was trying. Watching him made me feel sorry for him. It actually made me tired seeing him push so hard. He dropped about fifteen pounds and he did get faster. When Scott and Paul were sophomores, they competed in the one-mile race together at a meet in Franklin with several schools participating. On the third or fourth lap of the mile, Paul was a few yards ahead. Scott thought Paul was holding back and he wanted to prove himself as well, so he caught up to Paul and passed him. Not to be outdone by his younger brother, Paul widened his eyes, lifted his knees higher, pumped his arms harder, and yelled out super loud, “SH*T!!!” Paul passed Scott and finished ahead. The coach got a good laugh out of that. So did we when he told us about it. When all three boys were competing to qualify at the regional meet for state championships, the top four teams qualified. Because Paul hates long drives, he would purposely run slower so he wouldn’t have to ride long hours to get to state. But because Paul couldn’t stand for Scott or Mark to outrun him, he really couldn’t hold back. He couldn’t be beat by his bros. Another time their coach, Jim Saltz, who is not a runner but puts together some grueling practices, took the team out to his parents’ farm to get in about eight hard miles. Coach Saltz called out to Paul to “Pick it up!” Rob was running along with the kids. Paul, panting and heaving while running, yelled to his dad— picture a growling, mauling bear—“I hate jesus!” Rob said, “You can’t hate jesus, Paul. Why do you hate jesus?” Paul retorted, “Jim Saltz!” Rob answered, “What about Jim Saltz?” Paul bellowed, “Jim Saltz makes me hate jesus.” Jim Saltz is a family friend. He’s been good to our kids. He’s cooked for them, big spaghetti dinners at his house, and they have a rapport. Saltz is our kids’ uncle. Saltz is the good-time guy. When we sit around and dish about memories of the boys running, Jim will chuckle and reminisce, the big bad coach that he is: “What can I tell ya, you know I make Paul hate jesus.”6 6 As we try to be a devout Catholic Christian family, it was certainly disconcerting that our son chose to be so extreme as to not only take the Lord’s name in vain, but also commit outright blasphemy to shake things up and get attention. Please understand that the humor is found in Paul caring enough to yell. Being engaged is very important for an autistic person. For him to rise to the challenge and run it in as fast as he could showed his awareness of competition, goals, and success. This is huge for an autistic person and even more impressive for a passive autistic person. He was exhibiting independence and manhood, albeit throwing his weight around a bit, but at least he wasn’t hurting anyone. Autistic individuals actually use a lot of “shock and dismay” tactics in communicating. I think mostly it was for Paul to stimulate himself to replace a sensory need in which he was deprived. In addition—I sound like I’m making excuses for him—but I think Paul has an uncanny sense of the Divine and he knows that God can handle his outbursts and anger, and I’ve told him that. To not cause anyone discomfort, notice that I didn’t capitalize the name of Jesus.

18

ADOLESCENCE—THE SIZE OF A FIST

“There was a hole left in the wall From some ancient fight About the size of a fist Or something thrown that had missed And there were other holes as well In the house where our nights fell …” —Jackson Browne, “In the Shape of a Heart” As hurricanes have names, our adolescent storm, the Marauder, took on a gray, ominous form. He threw his cape over his shoulder, hiding from us. “Don’t look at me!” he seemed to say. Leave me alone!” In his mask, he paced, long black legs scissoring with deliberation, looming, brooding, sullen, and a foot taller in stature. Puberty is tough. Paul clawed through it, like a root in dark dirt. A root misses vision and hearing, and Paul missed other sense acuity. It was exponentially more difficult for him to navigate through adolescence than it was our other children. Yet claw he did, deep as an alfalfa herb, the Father Abraham of all roots—courageous and faithful. It became obvious when he reached the age of fourteen. Everything grew, seemingly overnight. Paul was as a plant—a vine crawling through fence posts, winding his way to his length. He received his sunlight, his watering. As with a plant, you have to walk away and go do something else, come back, and then measure growth. Paul’s adolescence was like time-lapse photography—in hyperdrive. Rob would ascend the basement stairs, his footsteps weighted. His pace called up through the staircase as a man burdened with mortgage payments, orthodontic bills, and college tuition. Yet it wasn’t Rob, because Rob was sitting on the couch. Heads would turn, because it seemed that a stranger had entered the house. What we were hearing were Paul’s feet, grown from a size 8 into 11. His steps landed farther apart than before, their outlines tracing a more mature imprint. Paul had big shoes to fill: his own. Personal hygiene was an issue. Paul joined his peers in solidarity on this front, in that he had to get used to all the new odors and eruptions sprouting on his body. It took about six months for Paul to learn how to wash his face. It was a lesson in patience getting the message across to Paul about the importance of deodorant. His legs grew longer, sinewy, hairy. He got ready for church, dressing in khakis, his loafers pinching his toes. The pants rose above his ankles. I thought the dryer setting was too hot and I scolded Paul, reminding him to set it to low. Again, astounded by the realization that the dryer wasn’t shrinking his clothes, we bought trousers with a longer inseam. Probably the most impressive change was Paul’s voice. It dropped below bass level. My stepdad noted, “Holy cow, his voice is deep.” It was deeper than Rob’s, tuba-like. We took a trip to Orlando to visit Paul’s Granny. She pulled me aside and said, “I need to show you something.” On the back side of her bedroom door were dashed lines, where she had swiped a pen marking Paul’s height. He’d grown eight inches taller in one year. Paul struggled through middle and high school. He fought against himself, against his mutable body, and against the environment. His habitat seemed to shift with his hormones. Everyone was annoying to him. He harbored contempt for everyone, especially himself. I would call his name to take out the garbage, to help with groceries, to retrieve the mail. His automatic answer would be a shout: “What?!” Whenever I pronounced his name, I received a caustic retort. One day I realized that I shouldn’t be hesitant to address him for fear that he would answer me uncivilly. We had a talk. “Paul, watch how you answer me. You are not talking to me nicely. You need to speak calmer and with more respect.” The autism didn’t help, because of its “creature of habit” defensive wiring. We had to separate the embedded cables within his cerebral cortex and reconfigure them into a more compatible mesh. It took a while for him to calm his habit of strident remarks. He did eventually learn to control his reactions. Again, it was a phase that we had to get through, and it was treacherous, so similar to some of Paul’s cross-country trails he ran, fraught with slippery sharp rocks and grueling hills. We had many noisy episodes. Here is one that captures the gist: Rob and I were away on business. The cell rang in the dark of our Manhattan hotel room. It was about five a.m. or so. It was Paul, his voice trembling. “Mom, I … I … I … made a mistake. I did something wrong.” He’d been nagged by an old memory of a cross-country race a few years previous. A boy ran faster and Paul couldn’t catch him. Paul

relived it. In his imagination, he was back there, running that race. The sweat poured from his temples. His heart pounded with anger. Even his leg muscles burned with the exertion of being behind, of not being ahead of the pack. He felt it as freshly as the moment it happened. In the predawn of the present, he drove his fist through the dark green wall of his bedroom. “I punched the wall and made a hole.” Rob half slumbered next to me. He rolled over, not wanting to fully wake. Drowsily, he mumbled, “Tell him we’ll fix it when we get home.” Panic still resident in Paul’s voice, I kept him on the phone. We resorted to praying a Rosary. Not wanting to prevent Rob from sleeping, I went into the small hotel bathroom to pray with Paul. Often it is the only thing that assuages the crisis of the moment. It was a Monday, which designates the Joyful Mysteries. With the contemplative reciting of the Apostles’ Creed, the Our Father prayer, the Hail Mary prayers, in decades, me starting the first half of the Hail Marys, Paul saying the second half. “Holy Mary, Mother of God, pray for us sinners now, and at the hour of our death.” It took a full forty minutes for both of us to calm down. For Paul, to realize that everything would be okay; for me, to realize that everything would be okay. My mother heard the noise from our bedroom, where she slept, house-sitting, babysitting. She knew he was upset and she could hear him talk to me over the phone. She also settled down, knowing that everything would be okay. That adolescent season was saturated with volatility. Nothing was consistent or predictable, except that we could count on living from moment to moment, mood to mood. Again, for Paul, a boy with a mild to moderate form of autism, coming of age was an ineffable stage, fraught with hurdles, obstacles, and precarious situations. Teenage autism angst, if sculpted from clay, would now be molded—in the shape of a heart—about the size of a fist.

19

WANDERING OFF

“Sail on home to Jesus won’t you good girls and boys I’m all in pieces, you can have your own choice But I can hear a heavenly band full of angels And they’re coming to set me free I don’t know nothing ’bout the why or when But I can tell that it’s bound to be Because I could feel it, child, yeah On a country road” —James Taylor, “Country Road” “Not all who wander are lost,” as a popular aphorism, lingers in the heart because of souls like Paul. It is in solitude that he finds his core. He longs for friendship, spending a great deal of time pining for it, yet he also needs his space, as he requires air to breathe. His sensory needs are complex. Normal sights, sounds, textures, and tastes are frequently abrasive to him—so acute that they cause pain. Picture a lightning bolt sizzling a nerve ending. It causes Paul to avoid stimuli. This in turn causes a deprivation. Paul craves to fill the void. It is in these forms that the Marauder takes shape. A sneeze, a hundred voices in a crowded room, bright vivid colors triggering alarm (think red and orange), even the hum of an air-conditioning system blowing through vents overhead and the breeze that follows across his cheek. Moreover, he struggles to understand people’s facial expressions. The arch of an eyebrow, the crack of a smile, the subtle lift of a chin, and intense eye contact are like pinpricks to his brain. He is unable to decipher the nuances and slight inferences of body language. He shuts these things off as they are the Marauder, breaking and entering his central nervous system with impudence. He misses out on a whole world of sensory information. His brain is like a coffee mug wanting to be filled, yet the coffee is scalding to the touch. So he seeks a modicum of sensory fulfillment. He wanders off in his head. He wanders off our physical property. There is a paradigm here, an illustration of how he copes. He feels alone, and I think that as he takes off for a while, he doesn’t realize how he’s missed by the rest of us. He is oblivious to potentially dangerous situations. Because of his yearning for the stimulus of being solo, Paul enjoyed going hiking or biking off into the woods for a little Thoreauvian contemplation. His being seemed to demand it; an impetus inspired by seclusion. He would don a fluorescent orange hunter’s safety vest and cap, so as not to be targeted as a camouflaged animal to hunt. He also carried a hunting knife, just in case he came across a wild hog. He would be gone for hours during the heat of the day. He never encountered dangerous wildlife, so the knife stayed safely in its sheath, thank goodness. I kept vigil in the kitchen, allowing Paul to have some independence because he doesn’t have a driver’s license, can’t live on his own, and relies upon his parents to make major decisions for him. My imagination spun maniacal accident scenarios, especially when there was a sudden thunderstorm. Just about the time I’d hop in the Durango to search the backwoods for him, there he’d be, loping up the driveway, dripping wet, orange vest weighing low around his middle, a beacon in the middle of a stormy squall. And then this happened … About five years ago, we went to the beach. Paul was twenty-one years old. That summer, tourists avoided the Gulf of Mexico beaches because of the Deepwater Horizon oil spill and traveled to the east Atlantic coast instead. Hilton Head, South Carolina, was our hot spot, where we rented a condo, like everyone else. Imagine the sensory feel of our visit to the beach. Sand scalloped the shore, hard packed like cement, not soft powdery white, but more like a city, closed in with skyscrapers. It was a hot blanket of humidity, gritty and sticky. Sunscreen swathed bodies; picnics, sand pails, boogie boards, and umbrellas stretched condensed from our little camp to the pier. It was that sweltering feel you have seeing that watery wavy mirage on a hot road, stretching far into a distance. I felt so hot, stifled, like I had nowhere to go. Even the ocean was lukewarm at best. I couldn’t climb out of my skin. It reminded me of being pregnant, when two are taking up the space of one. As was Paul’s usual routine at the beach, he waded into waist-deep water, spinning around, grazing his fingertips in a wide radius of circle around him, like an amphibious helicopter rotor. Using his arms as

paddles, he splayed giant waves upon the shore, watching them fall along the water’s edge. Paul was a child at play. He spent hours digging holes. His back, slathered in sunscreen, glistened in the sun as he sweated and labored to his heart’s content. People would stroll by, seemingly wondering where the younger child was that Paul was entertaining. It was another way for him to burn energy—the repetitive action of shoveling the sand, lifting its weight, and hypnotically watching it pile into a proportionate hill from its hole was methodical and therapeutic. I was on my cell phone with a friend. It was mid-afternoon and the rest of the family had retreated from the sun to the condo for a nap. When I got off the phone, Paul was gone. No note, no message of where he went. The screen on my cell faded to black. The battery was dead. How long he’d been gone, I didn’t know, nor the direction he ventured. Was it toward the pier, or the other way? If he’d hiked back toward the condo, I wasn’t sure of that, either, and even more unsure that he knew the way, as the buildings all looked the same. Of course I couldn’t help but be a tad worried about him being lost in the ocean. I didn’t quite panic, because Paul is an excellent swimmer and the water was as flat as it was warm. I marched to the lifeguard stand to report my case. The lackadaisical lifeguard, not recognizing the panic of the situation, radioed the next tower, seeming to move in slow motion. If I left to look for him, I risked that he’d return and not find me. Sit and wait, that’s all there was to do. That and pray for safety. It had been a solid hour since I realized he was gone. Looking down the beach, amid a sea of umbrellas and vacationers, a white T-shirt billowed along with a striding gait of an agile Paul. Ankle deep, he kicked through the water, working the quadriceps, the hamstrings. It didn’t occur to him that he was absent. He always turns up. God rue the day when he doesn’t. But that’s just me, his mother. Did it do any good to scold him? Well, a bit. But he really didn’t comprehend the magnitude of the situation. Had something gone wrong, even slightly? He had no idea. Paul fully absorbs his surroundings like a sponge; drinks in nature as water from a brook, sap from a tree, a bird’s song, gravel underfoot along a country road, and salty sea foam bubbling, rolling onto the shore of safety. His peace is divinely given. It is God who leads him on his jaunts through the woods. It is angels that escort him in his endeavors to pursue sensory communion. That is this mother’s solace. Back when I was in high school and college, I was a competitive swimmer and lifeguard. I taught swimming at our community pool in Plantation, Florida. I drove a boxy, beachy 1969 Ford Falcon to the Pompano Pier alone on the weekends and swam open water, back and forth, parallel to the shore. My roots sink low in shell-packed sand. This new dramatic memory flowed with others in my past; like water from an estuary, streaming to and fro between river and ocean; some fresh, some salty. It all depended on the tide. Later that weekend, after breathing a long sigh of relief, with all my chicks accounted for, I sat in a low chair at the shore, with the briny warm water washing over my (son) burned feet. Deciding to do a little wandering myself, I pulled out my blue gel pen and trusty spiral, and wrote this: Rear View Sunglasses Perched above the fluid glass, high above in a bleached white lifeguard stand, A red cross signs the back; her back. She counts the bobbers under her charge, Watching them disappear and reappear, she philosophizes. In Poe’s Kingdom by the Sea she muses over unseen angels. Her thoughts then withdraw and travel down a personal neural path. Lapping waves of words, drip from a memory, soak the paper in sorrowful typos—gracious calligraphy, Teenage angst, dramatic as an ’80s movie, she racks her heart; Trying to figure it all out … Truth to soothe her ancient soul, Underneath her surface, were wrinkles and weather. If beauty was skin deep, then she was a drowning victim. As habit called, she pulls psyche from solar roast into reality; Lifeguard break, Means a dip in the pool. She checks the clipboard and sees that she has to teach a forty-year-old man how to swim. Me? But she does, as his yuppie wife looks on from a vinyl slatted chaise. In her own struggle against elements, she treads water in salty/chlorinated preservation. The Guardian rescues her, His buoy—Salvation. Looking ahead to future sunsets, words roll, crest, tumble into the eyes and ears of her children, connect reveries of senses, showing, not telling, creating a desire to read on. Now she guards from hearthside, Safe in reciprocal love. A day at the beach, her autistic son goes missing,

a young guard, blond, clad in sharp scarlet suit, alarms the next station. The boy shows up and as the mother turns to thank the young overseer, she spots her own reflection in the sunglasses. They share and mirror each other. For a moment she is stunned by an electric ray, jealous of her younger self. But then she remembers, nostalgia makes the old seem better than the present. She resists the marauding eel. The Marauder slithers away. The reflection she recognizes in the younger blonde, is just a glint from Chekhov’s broken glass. Even though the younger has her whole life ahead of her, The graying blonde is rich in wisdom and knowledge. From gray ashes, comes beauty. Maturity speaks silently. It is good to not know what lies ahead. Would you do anything different, if you knew? The younger returns to tending jellyfish stings, naive to the day when she will look back to her days on the shore, in longing of simpler times, when the surface of her brain was smoother, like her skin, appreciating and leaving those days where they belong, knowing the value is greater in the salty baked scarlet, than the new vivid hues in a swimsuit catalog.

20

DRIVER’S LICENSE

“Have you ever noticed that anybody driving slower than you is an idiot, and anyone going faster than you is a maniac?” —George Carlin To drive or not to drive, that is the question. Paul is really good on a mountain bike. Adroit, he handles the hills, the rocks, and the slippery climb. He knows when to brake, when to shift gears, when to keep his weight behind the saddle on a steep downhill, how to lift the front wheel over a treacherous root, and how to manage ruts and mud. But trees don’t move like other drivers. There aren’t traffic lights at forks in the road of a mountain bike trail and yield and right-of-way rules. Cyclists don’t haul metal containers on and off ramps accelerating to sixty miles per hour, like semitrucks. When it was time for driver’s education for Paul, he was a senior in high school and twenty years old. His younger brothers were already driving. The classroom driver’s education stint was six weeks long from three to six in the afternoon. Snoozer. All the graphic videos, the textbook speed-read, and the intensity of the subject were difficult for Paul. It was a constant battle, deciphering whether Paul should be allowed to drive or not. Were we being reckless, putting everyone’s life at risk on the road? Were we holding him back if we didn’t give him a chance? What about a permit with restrictions? Looking back, I am glad we’ve somewhat settled this. The written test for driving with a limited permit is twenty-five multiple choice questions. Paul took the test three times before passing. That meant he could drive. Yikes. If only there was a brake on the passenger side, for the parent. That would come in handy. We took to parking lots to practice. That was okay. Venturing any farther was another story. Once I rode on the passenger side as Paul drove us to church, which is incidentally in the neighboring state. Rob sat in the backseat, the girls in the other seats, belted in tight. The roads wound snugly around mountains, limiting drivers to fifty-five miles per hour. That meant that most drove at sixty. After a harrowing, nail-biting, sweat-inducing joyride, my husband promptly warned me, “I will never do that again.” But we kept at it, trying to be consistent with Paul driving to a piano lesson, or the grocery store. What would this lead to, except more driving? In describing the feeling, the word “tremulous” comes to mind. When it came to parenting an autistic teenager, this was of course the hardest issue we faced. We wanted our son to gain as much independence as possible. We had to give it a try. And try we did. The day came to take the driving test. We had put it off long enough, waylaying Paul with excuses that we were too busy, that it wasn’t the right time, that there were other things he had to master first. He was still unpredictable in his moods. I feared that he might react too abruptly or that he wouldn’t react fast enough. His ability to think on his feet was (for lack of a better description) flat-footed, and not quick, as on tiptoes. I had my doubts, misgivings, apprehension, downright macabre terrors about the whole thing. But, undaunted, we went forth. I figured that Paul had to see for himself. I had to offer the opportunity and place the burden on him, let him reason out the danger, the responsibility, hoping that in failing or passing the driver’s exam, he would realize the risks. It was a bright sunny day and it was our main goal for the day that Paul take his driving test. We traveled to the next county to the DMV office where everyone from three surrounding counties renewed their licenses. There was only one attendant handling all forms of licensure. We’d reached the office at 11:30 a.m. and the office closed at noon for lunch. Also, because there was only one attendant who needed to tend to a driving exam for a patron, all the rest in line were asked to exit the building and wait outside as the officer locked the door and administered the last exam before lunch. Paul and I decided to go out for a sandwich in the meantime and come back after lunch to take his test. Paul took the driver’s seat and I sat on the passenger side. We were parked at the sidewalk curb alongside a whole row of angled parked cars. Our plan was that Paul would back out into the main smalltown road, pull up to the traffic light, turn left through the intersection, and scoot over to a diner on the adjacent block, where we would enjoy hamburgers and fries. “Paul, turn the key, and look carefully before you back out,” I instructed. Paul was cautious, looking back over his shoulder, “Okay, uhhh, okay,” he stammered. I helped him, saying, “Okay, it’s clear now.” Paul angled out in the opposite direction, facing the wrong direction on Main Street. “Paul! Pull back in, hurry!” He did. I instructed him again at the next opportunity to angle back out and drive on to the restaurant. We sat,

drinking iced tea and waited for our food. I asked him, “How do you feel? Are you ready for this? We still have an hour and a half before the office opens again. That was dangerous what you did, backing out the wrong way. Are you sure you want to take the test today, or do you just want to go back home?” “I guess just go back home,” Paul said, resigned. We tried a few years later again to obtain a license permit with restrictions. All he needed was to pass the written test, which took three times again. He answered questions with the attendant about his understanding of driving. The attendant assessed Paul’s answers and directed us to bring a medical form to Paul’s physician to fill out, sign, and return to the government offices in Raleigh-Durham. We had forty days to submit the extensive completed form. Within one week, we had the form completed and mailed to the prospective office. The next week we received a notification letter that disqualified Paul from obtaining a permit for the reason that we didn’t send in the form soon enough. I could have appealed to the office, but instead, because of the hassle and harrowing process, I threw up my hands and decided that it was just too difficult to make this happen. I reasoned that because of the obstacles we faced, all the effort and the risk we took in letting Paul drive often, even around our little town, cost too much. It just wasn’t worth the risk.

21

THE ABBEY OF OUR LADY OF GETHSEMANI

“I am a man of constant sorrow, I’ve seen trouble all my day. I bid farewell to old Kentucky, The place where I was born and raised. … But there is one promise that is given I’ll meet you on God’s golden shore” —Soggy Bottom Boys, “Farewell Song,” O Brother, Where Art Thou? “He was despised and rejected by men; a man of sorrows, and acquainted with grief; and as one from whom men hide their faces. He was despised and we esteemed him not.” —Isaiah 53:3 I got the sense that this was the center of the universe. In obscurity, so much was conceived here. Abe Lincoln’s birthplace. Bluegrass music, Kentucky bourbon, the rolling hills, and Thomas Merton, the Trappist monk who lived his last days here, a hermit. Because the monastery was named the Abbey of Our Lady of Gethsemani, I thought, yes, in the garden of Gethsemane is where the destiny of souls was born; where Jesus agonized and considered the full cup. The Bible says He sweated great drops of blood, as foreboding. I often thought of this and that any pictures depicting this are a little too sterile. I’ve only seen Jesus kneeling on a boulder, looking heavenward, alone and clean. Do we really have any idea of what He went through when He said, “If there is any way this cup could pass, but not my will, but Thine be done?” I’d driven five hours with Paul as my passenger. I endured his stimming, ticcing, and acting out. Triggers of frustration set him off frequently. We were heading toward answers to our critical questions. What if there was no hope? What if this was all a waste of time? What do they say, that eliminating what is unnecessary is half of it? But what if through the process of elimination, we still had nothing? We measure success according to decisions made, and results produced. Paul had graduated high school. We searched for his vocation before we found college as an option. Paul lived his own agony. Depressed, anxious, lonely, seeking; pacing. We felt we were running in place, getting nowhere. His depression was debilitating. Although he was verbal, his speech was chopped into scraps, shards, and splinters. Nothing smooth or soothing. You could feel Paul’s pain without being inside of his skin. Often his answers were one word. Then a pause. The next word’s distance would be spaced so far away from the first that it was difficult to make sense of his message. Paul wasn’t the only one working out jigsaw puzzles. It was painful for me because I remembered the despondency of depression when I was his age. I knew that to climb out of that hole, it would have to be Paul who reached for the opening of light, no matter how deep the well. The farther I fell, the darker and more dangerous it got. The dirt threatened to cave in. It was cold, damp, suffocating. Looking up, light was years away and dim. Like the waxing and waning of the moon. It was a lunar season when darkness was the background and light, a sliver, was far away. Was it worth climbing? Did I have the strength? Only little by little. But eventually, it was I who decided. It was I who would grab a foothold, a handhold. A crumb of ground in my palm, but still I clawed. A ledge of rock for a shoe. What I realized was that God gave me a leg up. As Paul’s mom, I could only set things up for him to strive. I couldn’t flip the switch. I couldn’t make him happy. How powerless Our Lady must have felt watching her son save mankind, and she walking alongside the Way of Sorrows. But then I thought, could He have done it without her? Everyone must dwell in the garden of Gethsemani at some point. The point when he or she is alone, reckoning with one’s destiny. No matter how bitter the cup, how rough the road. I was dropping Paul off for almost a week, like summer camp. And just as scary. I was back to that place, the verdict, where you think that maybe there’s hope against hope that it’s really not that bad. Somewhere between denial and acceptance of the worst-case scenario. Perhaps Paul would find his niche here. I pictured Paul with a short haircut, walking around in a brown habit, a simple wooden Franciscan cross swinging from a piece of twine around his neck. He’d commune with other brothers, making cheese, fudge, and fruitcake amid contemplative silence. I imagined sandaled feet, walks in the woods, lauds, vespers, and compline prayers. It could happen, right?

At Mass one Sunday, the celebrating priest talked about the Abbey in his homily. He discussed making a silent retreat there and hiking. He was looking out over a valley from a hilltop. He could see the Abbey, some distance away from where he stood. As he descended the hill, heading in that direction, he lost sight of it and became disoriented. He asked God for a sign. Soon he saw a trail sign, with an arrow and the number 13. “Thank you, God.” He walked on. More signs with arrows, but the numbers increased. The day grew longer and colder, and the sun faded. He was thirsty. He prayed again: “God, thank you for the signs. But now, I need a person.” Soon he saw a traveler, a guy with a walking stick and a backpack. He pointed up the road. “It’s right up thatta way.” The priest made it safely back to the Abbey. He illustrated that we need a relationship with the person of Jesus Christ to lead us. Jesus, the Way, the Truth, the Life. I sat in my pew and remembered. Oh yeah! Snapping my fingers mentally. I’ve got to write about Paul’s retreat to the Kentucky monastery. It was the fall of 2011. Remote, the monastery was quiet, nestled quaint in the midst of green rolling hills; lots of trees. We stopped in the gift shop first. Pottery, cheese, fudge, and Thomas Merton books. Then I saw it, a sign made from clay and baked in a kiln. A Latin phrase. ORA ET LABORA. It’s the Benedictine rule of life. It means “pray and work.” How did St. Benedict know that’s how we roll? I bought the sign; it hangs in my kitchen. We connected with Brother Luke. I expected a little fanfare. More leading by the hand. But this was probably the most serious setting of adulthood in the real world. This wasn’t camp. It was looking like a long week for Paul. But he would be safe. There would be a lot of open-ended time. I knew he’d work a little but was hoping he’d get to work a lot. That would be how he prayed best. I drove to a motel and spent the night. I jogged through a suburban neighborhood, afraid of venturing too far off. I took in what I could about Bardstown, Kentucky. It was familiar in a way, as a southern state, but it definitely had its own scene. There was something oceanlike about the homes on hills, all black fencing, running rolling acre over rolling acre. The grass waved like water and the horses were so much a part of the landscape. There was a solidity to it. A history that I bowed in reverence to, as a visitor. In the morning, I grabbed some motel coffee, checked out, and headed into the mist, an ethereal fog fusing these southern states, Kentucky, Tennessee, and North Carolina. Returning to the monastery a week later, I made Rob drive. I needed him. I wanted him to help me read Paul’s experience. We were both in a place of stasis. At the mercy of Paul’s autism and God’s providence; we wondered what to do with our Paul. Paul was ready to leave. We spoke with Brother Luke, who told us that Paul wasn’t suited for the rigors of monastic life. I felt the same gut punching when the first grade teacher scrawled her note: “He doesn’t pay attention!” Another fist came as a flashback when the headmistress at the private school at the end of kindergarten said, “We can’t offer you a first grade contract. We believe Paul has a severe learning disability.” And the worst sucker punch was when a psychologist, with no compassion in his tone, felt it was okay to not sugarcoat the situation, telling me, “He has a severe learning disability.” I wanted to punch the guy back. I don’t even remember the whole situation. I guess I’d blocked it out, like ripping a photo in half, erasing the person from memory. Although Paul spent time working, planting trees, walking, and praying, we’d driven a long way to accomplish what he already did on a daily basis at home. It felt like another run into a dark dead end. Paul didn’t talk about the monastery too much. That in and of itself was a painful reminder of autism. Because he didn’t express himself well, we didn’t think he received as much as if he were neurotypical. The Marauder loomed, even in as holy as a place as the Abbey. But so did Satan in the Passion of Jesus. He is always prowling around, seeking whom he can devour. Paul appeared to have the temperament of a monk. But then there was the nagging reality that even though he required time alone and lots of space, he craved intimacy and the sense of belonging in relationships. He’d not yet cultivated the art of solitude. That difference between alone and being lonesome that we all face. He couldn’t handle the disciplined austerity of monastic life, at least not then. Maybe he could become a monk in his thirties? I still wonder about that as I watch him in small increments, inch by inch, maturing into godly manhood. Recently, though, I asked Paul about it. We’ve reached that blessed portal of hindsight. When the postcard’s ink is dry, even a little faded. Paul heard the same homily. I asked him about it. “Paul, did you hear the priest in Nashville talk about the Abbey of Our Lady of Gethsemani?” “Yes.” “Can you remember? Can you tell me about your time there?” “Okay … Brother Luke didn’t want me to wander around the whole monastery. There were places I wasn’t allowed to go. I ranned around in some parts but some places it was interfering.” “Did you work? I know you did. Do you remember what you did?” “I did work. Yes. Putted labels on covered shrink wrappeded cheese. I saw them make cheese and fudge.” “I remembered they don’t eat meat.” Katie added, “Never, do they eat meat, Paul? Or just on Fridays?” “Just on Fridays.” “I also workeded on okra plants, workeded in the garden, workeded in the morning. “I likeded making a couple of friends. I helpeded some old men with yard work at some old houses.” “Oh. I didn’t know you did that. Houses away from the monastery? Like in the community?” “Yes.”

I didn’t know this until this conversation. Paul never told us he’d done that. “I met Jim Black. He had a limping problem. He was a visitor from Nashville, Tennessee. He wanted hugs of me, and so I did.” I remembered Jim, who had approached Rob and me. He had also been on retreat. Many people came to get away and discern God’s will. He told us how much he enjoyed Paul and his friendship. “Paul is a hard worker. He did a great job.” And now that I ruminate upon this seemingly unrevealing experience, maybe the yielding is yet to come. Hindsight is clearer after all.

22

A COLLEGE EXPERIENCE

“Life is a succession of lessons which must be lived to be understood.” —Ralph Waldo Emerson It has been said that experience is a great teacher. We wanted Paul to have as much opportunity as our other children. A college education is one of the rites of passage that is commonly denied to persons with disabilities. I would be remiss in not stating the obvious. Because so many children born in the nineties on the spectrum are coming of age now, there is this huge gap in knowing where and how they will thrive. Special education has surely improved for children on the autism spectrum, and as awareness builds in communities, this will affect higher education for them as well. Currently, it is difficult to find a college experience for adults with cognitive disabilities. But we found it. We found a structure that wasn’t nearly as rigorous as a typical college education. Paul graduated high school in 2010. He did not attend class his senior year. He’d finished his requirements to graduate in his junior year. He worked with Rob and me at our warehouse, assembling and shipping games. Technically he was still in high school, but not attending at the building with a traditional schedule of bells, teachers, lunch, PE, and the rest. It was really his first year out of school, the first year of embarking into adulthood. It was quite a transition. That first year out is just too vast, full of variables even for the neurotypical person. Time was his own to spend how he wanted. He had the liberty to do as he pleased. In reality, it was a bit scary. All that open-ended time is quiet, too, so quiet that the nothingness shouts. Furthermore, he felt threatened by the future. Rob and I did too, perhaps even more than Paul. Where did Paul belong, where did he fit? He wasn’t qualified for community college; the academics were too rigorous. There had to be something for him. We searched the Internet. We found an Integrative Community Studies curriculum at the University of North Carolina at Greensboro. It is a four-year program called Beyond Academics, which provides classes, social situations, and independent living with support. He would receive a certificate and not a diploma, although he was considered a UNCG student, and could walk in graduation, wearing the royal blue garb and cap, and turn the tassel. But could we get him in? Would he be accepted? There was an application process, then two interviews. Then, the waiting … at the speed of snail. Paul can make a good impression. He’s handsome and athletically built with penetrating hazel eyes, like an Australian shepherd. This breed can get away with looking a person in the eyes for a long duration, longer than is usually comfortable. A dog can get away with that. Humans usually can’t without making people uncomfortable. Paul has a way of getting away with it too. People feel empathy and compassion in Paul’s gaze. But on the negative side, there is something else that Paul does when going before an interview panel. He winds down, like he could fall asleep. He yawns and slumps down in his chair. For all the excitement of getting into the program, here he was sitting at a conference table, leaning on one elbow, head in hand, and yawning in a dull torpor. I wanted to snap at him, “Paul! Sit up! Speak up!” But in doing that I would have embarrassed him and myself. He couldn’t help it. It was the way he coped with stressful situations sometimes, a sort of semi-shutdown. I talked silently to myself, to God. This is Paul. This is the real Paul. Certainly in the criteria for being accepted into a program for disabled adults, there would be special considerations? That applicants are allowed a certain amount of handicap license and that those handicaps would actually qualify him? I hoped beyond hope. We had to resign ourselves that either Paul belonged at Beyond Academics or he didn’t. And if he did not, then what? But he was accepted. Then we had to figure out how we would pay for it. It was going to be tight. Based upon a tier system, students were allotted a certain number of hours of support by mentors. Paul’s mild to moderate level required that support would be provided for fifteen to twenty hours per week outside the classroom. Mentors would assist Paul in everything from homework to laundry, shopping, cooking, cleaning, organizing, and social activities, even getting him to church on Sunday. It would cost us $1,326 per month. Yikes! This was in addition to tuition and living expenses. Social Security helped out with rent and food, but still we stretched. This was the beginning of a new era: Paul as a college student.

23

BROKEN CHAIN

“It is by riding a bicycle that you learn the contours of a country best, since you have to sweat up the hills and coast down them.” —Ernest Hemingway It’s always hard when a child leaves for college. It doesn’t matter if it is your oldest, middle, or youngest. I was preparing dinner. From the kitchen overlooking our great room, my gaze rested on the corner table where birdseed outlined a square where the monstrous birdcage had sat just a few days before. It seemed incredibly empty because there was no cage, no bird, and no song. Calvin the cockatiel had joined Paul at college. I opened one package of chicken instead of two. Our nest was emptying—we’d dwindled from eight to six. There was no need to triple the recipe tonight. It had been a few days since Paul, age twenty-one, had left for the University of North Carolina at Greensboro (UNCG). I felt several emotions at once. Again, I felt like I did when I sent Paul off to first grade at public school, waiting for the notes to come home from his teacher, the ones that said, “Has trouble focusing. He doesn’t pay attention,” in that jagged, slanted penmanship. I was also sad because no matter what would happen, Paul was beginning a new and exciting chapter in his life. We were turning a page, and there was an underlying fear that something would go terribly wrong. That was the bittersweetness I had to risk tasting. Part of that was that I had to begin filling the void in my life that rearing all of our children into adults opened—that vast blue abyss of “what now?” Paul was at once a help and a constant, unremitting challenge to us, his parents and legal guardians. With the onset of this major life change we changed from the everyday clamor of clanging pots and pans, slamming doors, slapping fists, and echoed words uttered from Paul’s tunneled voice, to stark silence. Our second son, Scott, also began his sophomore year at college. I looked again, swallowing the nothingness of our expanded living room, which we spent so much time and money on enlarging. The kids had all helped pack the walls with insulation before the drywall was hung. We all wore long-sleeved flannel shirts and masks. That extra sixteen feet seemed cavernous. I noticed Scott’s shorts still draped the end of the sofa. The ache in my chest motivated me to package up some coffee, toiletries, and ramen noodles from good ol’ home sweet home. I soothed myself, knowing that Scott was succeeding in his business major and navigating his way into manhood. My wooden legs lumbered over to the kitchen. I remembered how light on my feet I was when the kids were little. I rummaged through the refrigerator. Our daughters would be home from cross-country practice soon, lunging for the peanut butter, and my husband would ask, “What’s for dinner?” Our youngest son Mark would stumble in after wrestling practice with a chronic case of senioritis rolling through his eyeballs, eking out the last two semesters of high school. He’d be hungry too. Instead of food, I craved commotion. I wondered if this was how Paul felt. Deprived of stimulation because of haywired autism, stimming was how he compensated: banging a stick, punching a speed bag, and bouncing a handball. What would be my stimming? I yearned for baby faces, powdered skin, and cherubic voices. How would I replace those endearing things? Could they be replaced? What would even compare? I was to find out that unselfish mothering never ends. A woman’s work is never done, right? My giving would extend to other things, other souls, more generosity, more humility, more creativity. What conflict! I missed them terribly, yet I didn’t want them living in the basement. Maybe that was it? In letting go of them, I released an era I knew so well, so exhausting, so chaotic. It seemed like it would last forever, but then it passed, almost as if it hadn’t happened. But I frequently felt that way even when the kids were little. My life was so jam-packed, all the time, never a break, and I could see it like a time warp. I’d wake up from an afternoon nap and sense the speed within the silence. It felt surreal, as if I were watching through a vintage View-Master. Neurotypical folks settle and balance with facial expressions, social cues, and sensory communication. In a way it seems upside down, anything but linear and straightforward. In contrast, ever since Paul was a toddler, I couldn’t picture him behaving or sounding any other way than he did, although God knows I’d tried. He was my typical Paul: neuro-logical in manner and conversation. The puzzling part is that in order for humans to function with joy, we need to have both: emotional interaction and left-brain logic. This is the shape that we couldn’t form for Paul. When we lined up school for Paul in Greensboro, we needed to connect with counseling and medical services. I brought Paul to see a new psychiatrist and she spent a fair amount of time talking to him.

Afterward, he stepped out into the waiting room and she and I talked about what she thought. She was an older lady who was looking forward to retirement. I was disappointed that Paul would be handed over to another doctor, even though the new guy was also highly regarded. I felt she understood and as her hand cradled her chin, she peered up over her glasses and murmured, “It sounds like OCD to me.” There was something knowing about the way she sat in her worn comfy chair. I saw credibility in the spriggy gray hairs that went their own way in her mature years. I was comforted by her “been there, done that” objective view. She wasn’t discounting autism, but it seemed she intentionally didn’t say, “In addition to autism, it sounds like OCD to me.” There was definitely discretion in her tone. I appreciated her professional opinion. She gave me confidence. By not piling one disorder on top of another, but diverting my attention to the additional complication, I began to gain a new perspective. It was strange how I found OCD, as a label, to be a huge positive. I viewed OCD as a disorder, something only very intelligent people suffered. And if the very intelligent suffered it, they could think their way through the healing. I suppose the grass is always greener. Usually, when a well-intentioned listener shared with me that they knew someone with Asperger’s syndrome and how difficult it is, I found myself envious. If only Paul’s troubles were that mild, I would think. I’d have the same reaction reading about miracle recoveries brought about by Suzuki violin lessons, dye-free diets, or hyperbaric therapy. We’ve tried them all and have reached the conclusion that if any of these remedies actually works dramatically, it is either because the child is so severe that any change is a deserved glimmer of hope, or that the child isn’t truly autistic to begin with. But I digress. In discussing OCD, I felt affirmed and thought, “We might be able to do something about this!” I speculated that we had a new starting point. Maybe he could learn to be calmer, less reactionary. He could think things through. When he got down, maybe we could lessen the duration and it wouldn’t take as long to pull out of it. I was grateful. Maybe he could fixate less, and live more.

I vacillated between elation over my son’s independence and filling the vacated spot where my heart does its beating. I decided to pay him a visit for Labor Day weekend. Paul had had much to hurdle in the previous three weeks. For starters, his bird Calvin had flown away from the new apartment when the front door opened. He called me to explain, “I— I— I—” he stammered, had Calvin out of his cage, “should have known better to keep him in my room.” “You let him out in the living room, Paul?” I asked, as if that would do any good. “Muhammed opened the front door and Calvin flew away. I went outside and looked for him. I kepted on calling, “Cal … vin … Calvin, Caaaalllvvviiinnn! He wouldn’t come.” Then Paul contracted a skin rash due to different laundry detergent and needed a doctor. Third, his bike tire went flat, and since this was his main form of transportation, well, I just figured my son needed some encouragement. When I arrived in Greensboro, I picked up Paul’s bike from the shop. Later, I waited for him in the lobby of the Beyond Academics building. Paul shuffled toward me, a little sweaty, a book bag slung over his back and an earthy green LIFE IS GOOD T-shirt adorning muscled shoulders. “There you are,” I said. “I’m so glad to see you!” He snickered and wrapped his arms around me. In stature, he was different than the little boy I used to know, yet the swiped cowlick on the left side of his forehead would never change. It reminded me of Hermie the elf from the cartoon Rudolph the Red-Nosed Reindeer. The next day, we spent the morning having breakfast and shopping. We went to a giant pet store, as Paul had agreed to my suggestion to get a new bird. “How about a parakeet this time?” He acted impassive about it. I could’ve taken that two ways. It either meant that no bird could possibly replace Calvin the cockatiel, or that Paul may have not wanted to hurt my feelings in my efforts to make things better, so he wouldn’t speak up about his indifference. I pushed the issue and bought a demure but tropically bright green one that perched silent in the middle of a flock of other blue, green, yellow, and white parakeets. “What about this one, Paul?” “Okay … I g-u-e-s-s,” he said, stretching it out slow and unsure. We also bought a smaller cage, more proportionate to Paul’s room. We hauled in the new cage and pet parakeet. I set him up. Paul didn’t do anything to help. I sensed an evasiveness in getting used to a new pet. I look back now, understanding that Paul probably wasn’t ready to take on a new living thing, not with all the other big changes he was already managing.

As I screwed in a lightbulb, he sat, assembling a Lego Empire State Building structure. I suggested he learn how to work his voice mail. He asked, “How long will it take?” “About five minutes.” He abruptly answered, “Well, come on, let’s do it.” Looking up from the Legos, he fluttered his fingers as if to say, I really can’t be bothered with this but since we have to—Woman! Will you get on with it? Paul recorded his voice message for important callers. It went like this: “Pause … Uh … Hi this is Paul. You’ve reached me, Paul Anderson. I couldn’t answer the phone. I’m busy with anything important. I hope you aren’t an emergency for me. My phone may be off.” As he went on, I stifled my laughter and let him run on until the system cut off his rant with a recorded voice—“If you would like to save this message, press one.” After only three weeks of college, I noticed progress. He was dealing with new roommates, teachers, mentors, and schedules.

Paul’s voracious appetite matched with articulation in saying grace. With our heads bowed and eyes closed, he launched into a prayer. “Dear Jesus, help me to know my dreams and how to think and how to talk to people. Help me to not spend too much money. Help me to make the right decisions so Mom doesn’t have to spend too much money.” I grabbed his hand and let him go on. When he finished, I looked at him and said, “Paul, you are so hard on yourself. I’m proud of you. I know you’re trying. Try to enjoy being in college. Have fun with this. You can only fit so much in one day. Remember, you can’t fail.” Sunday morning came and we attended Mass. After lunch Paul became agitated as the afternoon heated up. I asked if he wanted to go swimming at my hotel. “No. You don’t want to know what I want to do.” “Yes, I do. Tell me.” “I want to ride my bike.” “Well, OK, let’s do that.” We found a nice park with a loop for walkers, runners, and bikers. I sat in my car and dozed while Paul pedaled his way through the park. It had been a long while and I started to get concerned. After an hour and a half, I saw him walk his bike up the hill with a broken chain trailing from a greasy hand. Both of us distraught, I exclaimed, “What happened? Can we not have a normal experience for a change?” The drive train was swathed in black smut because Paul commonly overused the oil on the chain every time he rode. I grabbed a bottle of alcohol that I kept in the car, doused his fingers, and handed him tissues. He was filthy, so hoisting the bike in the car was up to me. My white shirt didn’t fare well, and I grew frustrated. “Paul, why do you oil your chain every time? You don’t need to do that! My shirt is ruined.” “Ohhhhh,” he groaned. With wringing hands and clenched jaw he wound himself tighter by the moment. My gnashing of teeth didn’t help, but I couldn’t restrain myself. “I don’t know why the chain broke,” he says. “I might have changed the gears wrong.” “Well, how old is the chain?” “I don’t know. Old enough.” We drove to the bicycle shop. We decided that in order for a new chain to be put on, the bike needed cleaning up first. The clerk offered degreaser and brushes for purchase. I wondered if the apartment complex even had a hose. There was no way I was getting into that. That would mean heaving the bike back into my car, grease and all. I asked the mechanic, “Can you do it?” “Yeah, we can.” “How much?” “We’ll have to work it into the schedule for $59.95.” I thought, sixty bucks? To wash a bike? “Well, OK. Here we go,” I resigned. What choice did we have? We walked out of the bike shop and Paul stopped to look me in the eye. “Mom, at least I’m not hurt.” “You’re right, Paul. It could be so much worse, couldn’t it?” Hungry, we headed to Moe’s Southwest Grill. “Welcome to Moe’s!” the staff bellowed, in a familiar Come in, sit down, we’re all friends here, we know it’s hot outside, and you look famished, have some food, and what do ya want to drink, folks? kind of a way. Ordering was tedious, following suit with our afternoon. At the end of the counter, I pondered the drinks. Soda? Naaah. French carbonated water? Not enough zip. I saw beer plunged into ice and mentally I heard my husband say, “Who needs a drink?” Mind you, I hadn’t had a beer since college, and never liked it much, anyhow. I preferred wine. Wine wasn’t available and it didn’t sound all that great with a burrito anyway. I pulled a Bud Lite with lime out of the chest. It was cold after a sweltering weekend. I had to admit it helped the $59.95 go down a little easier.

24

BURIED TREASURE

“Perhaps I had a wicked childhood Perhaps I had a miserable youth But somewhere in my wicked, miserable past There must have been a moment of truth … Nothing comes from nothing Nothing ever could So somewhere in my youth Or childhood I must have done something Something good” —Richard Rodgers and Oscar Hammerstein II, “Something Good,” The Sound of Music This was Paul’s first year at college A family friend, also a UNCG student, gave him a ride to the beach to meet us for vacation. Then she joined her family, as they lived close. We settled into our condo right on the ocean. Opening the sliding doors to the sounds of surf and views of blue, I remember everyone changing posture, sinking into rattan cushioned chairs, and standing on the balcony, hands on rails, feeling the briny breeze on our faces, wanting to stay forever. Thinking back on it now, we hadn’t seen Paul for a couple of months. His time at college seemed to stretch him, like the wings of a seagull, a stark white boldness, squawking and scrapping for sustenance. Compare that with the sandpiper that skirts the shore, brown and blended into its habitat, needle beak probing for food; not ambitious, but happy to rely on what’s in the mud for nutrition. Paul’s foraging for life at college, and then joining his family at the beach, draws a seascape: an image of growth so succinctly seen in birds flying away from the nest. The breezy environment of the beach and family allowed him to take it easy. We’ve witnessed it with all the kids. They return home for a break and basically collapse from the exhaustion of braving the big world of college. The first evening, while my brood waited on me to fry some haddock, they started discussing movies. Paul plopped down at the outer edge of our gathering, sitting cross-legged with a movie in each hand, seemingly grounded. He said, “Yes, I brought The Muppets’ Wizard of Oz and a Ducktales cartoon,” showing us the cases. He recited the years each movie was made and how long each one ran. Somehow they got onto Paul’s following of the Rocky movies. He said, “The first Rocky movie was made in 1976.” “What about Rocky II, Paul?” “Uhhh, 1979.” “Rocky III?” “1982.” “Rocky IV?” “1985.” “Rocky V?” “1990.” “Was there another one after that?” “Yes, Rocky Balboa was made in 2006.” We were then curious about all the Godzilla and King Kong movies, and the zillion Disney movies we own. Paul rattled off each one’s date and the length of each reel. If that wasn’t enough, he supplied the names of the main actors and the director. We laughed harder with each one he listed. We’d had no idea that he considered this information important. He was also impressed by where the movies were made. I stood frying fish, keeping watch over boiling oil and enjoying the kids bantering back and forth. I loved that Paul was engaged in this conversation and taking the lead on being the most knowledgeable on a subject. Everyone seemed to be a little in awe of him. They sat there, spellbound. I was impressed by how Paul had such command of the conversation. “What else does Paul know?” Rob and I exchanged looks from across that crowded room. We were sharing a new discovery in our maturing marriage, there in the midst of our children on a pleasurable vacation. How was it that we deserved such bliss, such joy of love and family? It’s strange how people so closely known can still discover talents, skills, points of view, philosophies; riches. There at the beach, a treasure trove of Paul washed up on that beautiful North Carolina shore.

25

COLLEGE MEMOIR

“Don’t know much about history Don’t know much biology Don’t know much about science book Don’t know much about the French I took But I do know that I love you And I know that if you love me too What a wonderful world this would be” —Sam Cooke, “Wonderful World” Paul continued at UNCG in the Integrative Community Studies program. In some ways, he learned a lot. He learned a great deal about being independent. He lived in an apartment, shopped for food, cooked, washed his own clothes, got himself to class, worked out at the campus gym, ran the streets in sneakers, biked to Target, and went to the barber to get a haircut. He had his own checking account and a debit card. I managed his bills and deposited money into his account. Rob and I oversaw from afar. It was a stretch not only in geographical distance but financially as well. Because it was a new program, the administration had some bureaucratic jumble to work out so that this course of study would eventually fall under the same auspices as others at UNCG. At the time, Paul couldn’t qualify for federal financial aid. It was complicated by disability, the fact that he received Social Security Supplemental Income and Medicaid. There was a huge disconnect between the students with disabilities and the higher education structure. There were more drawbacks. Paul is considered high functioning in so many areas. He looks normal, incredibly handsome even; with his hazel eyes, athletic posture, and straight white teeth. Yet he lives on the edge of a precipice. It’s as though he can see what everyone else seems to have, and he wants it, but he just can’t leap over the gap. He wants to be included with the normal cool guys. He doesn’t want to hang out with disabled or retarded people. Their looks disturb him. He doesn’t like the association. He doesn’t suck his thumb, slobber, or verbally attack people like other neurologically affected people. His limbs don’t contract obviously and cause distraction, like those of Fragile X7 students. He isn’t happily unaware of his pointed tongue or slanted eyes, like his peers with Down syndrome. No, he’s very aware of his challenges and those of others. He’s a bit of a snob actually. He wants to be grouped with the normal young men, the ones with swagger. But they don’t want to hang out with Paul. They like him well enough, but not enough to have engaging conversations, the usual give-and-take of the culture in which we live. At college, Paul was still living in his own box that way. During the first year, Paul stayed within the confines of the program, for the most part. He tried the gatherings set up for the Beyond Academic students. There would be ice cream socials, soccer games, meeting up with peers for pizza at their apartments, and other social opportunities. Classes took all day, and this was a mixture of good and bad. The academics challenged him, stretching his sphere of knowledge, increasing his vocabulary, pushing him to better his reading comprehension. His writing improved as his sentence structure developed along with his ability to express himself. I remember speaking to him every few days and constantly touching base with his counselors, teachers, and advisers. They assured me often that Paul’s expressions of anger, difficulty with situations, and stressful reactions were quite run of the mill in comparison to other students in the program. I feared that he stuck out like a sore thumb when it came to mixing in with the rest of the students. Paul could be difficult, and it concerned Rob and me that some of his mentors might grow weary or discouraged by his cantankerous tendencies. His student-life adviser, Jessica, was a very calm person, unflappable even, and would often assure me, “We are used to this. Paul is not the only one who has issues. He is no more extreme than the others.” Still, we were four and a half hour’s distance drive away from the college. I worried about his safety, coping skills, and contentment.

Because I wasn’t there with my son, and because the focus of the program was to promote the type of independence that neurotypical college students experience, I decided that this part of the book required

a lot of Paul’s input. Between the two of us, we decided that Paul’s description of his memories would be best communicated through writing. Writing has become a good way for Paul to redirect his anxiety and allows him to funnel his thoughts and feelings about all sorts of subjects in a constructive and therapeutic way. Since his college experience, writing has been a gold nugget discovery. I asked Paul to recall a few memories from classes and write about them. This first memoir is taken from a class called Personal Well Being. Speaking aloud as we talked about Paul writing the memory, he opened his eyes wide, flagged his hand emphatically, and said, “Oh yes, I have one! We learned about stress!” He pronounced the word “S-T-R-E-S-S,” ironically stressing the word itself, as if in a theatrical skit. In Personal Well Being class we had to learn all about stress. We had a compition game of teams to come up with all the answers about stress, and all because of me I think I made my team to start looseing. In some ways I was making my team loose. But so then I started clapping and wapping my hand together as hard as I could. Maybe it mightive scared other students? The teacher Miss Jones asked me this, “Paul are you O.K.?” And I said “NO I am not”. “Well what is the matter?” I told her this, “You gave me the wrong work by thinking about all that stuff to have me overcome my disability.” She said this, “I did not give you the wrong work.” The above passage is interesting for three reasons. First, the subject being stress triggered definite stressful feelings. It is both ironic and humorous. Second, he relives his memories more acutely than the first time he receives them, when at first observation, it appears he’s not paying attention. He suddenly remembers a distant memory and ruminates upon the negative edges of it, to the point that it cripples him, keeping him from living in the moment. He spends an enormous amount of time living in the past, or in the future, fabricating fantasies about things that he hopes will happen. Third, Paul resented his deficiency and therefore developed contempt for the people who were trained to help him. Instead of allowing his teachers and advisers to guide and suggest solutions, he railed against them, thinking that to be independent, one didn’t need any help at all. His perception was that he shouldn’t need remediation. He found it very frustrating that he in fact did need it. The following passage describes a social situation that Paul experienced set up by one of his teachers. I myself do not want to be so very humiliated from other persons, by them telling me this, “Paul you are an adult you are not a baby”. Or they will say, “Paul how old are you? Paul you are acting just like a baby.” I have maybe only acted like one just at times when I was having hard times and so much aggravation from family or even other legal guardians. But so, 3 years ago when I got back to Greensboro for school, I was working with my individual teacher named Keisha, after she took me grocery shopping, she had me come see a guy named, ‘T.J.’. He was black and had very large forearms. One leg was skinnier than the other. He had a large head. He had some sort of disability. I don’t know what it was. He was in my grade at Beyond Academics and we went to his apartment. He thought of having me play a car racing video game. I tried to listen to him to know how to play and he tried to teach me and so as I played the car would not get going. Then Keisha got me off of it, because she said it was class time. I tried to give out my excuses about the video game but she said, “Paul that has nothing to do with it. “ So I got so that discouraged and upset with making frown faces and putting my hands on my face and waved my hand at Keisha and she said, “Paul, how old are you? You have no right to act like a baby.” I said, “I am not acting like a baby.” She said, “Yes you are.” I mightive then said, “Well ok, just to let you know Keisha, I do not want to be all humiliated when I want to be an adult all so that you care and you think it all matters that you see the upsetting faces that I am (I YELLED OUT): damn Making!” Then she said, “I’m not working with you.” And she went out the door and called some others that were in charge of Beyond Academics all what I did, on her phone. I give Keisha credit for trying to set up a constructive social situation for Paul and T.J. It seems she thought it a good fit and an opportunity for both young men to enjoy some fellowship and play a game. I imagine she quickly became frustrated when Paul hit a snag. Unfortunately, Keisha wasn’t thoroughly trained to defuse the situation. Upon hearing Paul read this aloud to me after two years had passed, I could picture the scenario. I felt sorry for him and regretted he had to go through that. It all seemed very unnecessary. It could have been remedied and might have turned out to be a positive memory for him. I also can’t help but wonder about T.J. and his impression and disappointment. There were certainly many positive aspects of college. Paul joined the swim club and traveled to some away meets. He also joined a running club that met on Saturday mornings. He belonged to the Ultimate Frisbee team and competed some there too. He somewhat enjoyed the independence of apartment living, but got lonely as well. I hear through his description of a few young men and their attentiveness that he very much enjoyed Intervarsity Christian Fellowship. At this time, Paul was twenty-two and twenty-three years old. He relied upon mentors who were labeled as community care support counselors for transportation to the grocery store, church, and other places he needed to go. He rode his bike a lot as well. He didn’t have a driver’s license, and he wanted one badly. I think this was the reason he exerted some independence by walking to the gas station convenience market close to his apartment to buy snacks and drinks, sometimes three times a day. Because of his developmental delays, we recognized that he was finally experiencing a typical adolescence. He began

experimenting with drinking and bought a pack of cigarettes. This was very scary to me as a mother. Thankfully, he told me about all this after a potentially bad situation was defused through the help of a youth minister named Joe and another named Graham. Graham explained the risks and health dangers of smoking to Paul. Paul ended up flushing the cigarettes down the toilet. Graham also gently instructed Paul that he would keep the wine for him and that Paul was allowed to have a glass only when the two of them got together on the weekend. I never got a chance to meet Graham or thank him, but my gratitude to him is great. Joe has continued to be friendly on Facebook. Growing up is difficult and Paul wrestled his way through it with courage and agony. Again, looking back, Paul’s growth has been revealed to him and us through the lens of time and distance. Later, we discussed what Paul had experienced, what he liked, what he didn’t, and how his perspective has changed. There were several people in Beyond Academics who modeled a sincere desire to help those with disabilities, to enable these special adults to fulfill their place in the world. Mostly I am thankful to them for working earnestly on my son’s behalf. For instance, Brian was Paul’s student-life adviser for a good while. He walked alongside Paul to introduce healthy social situations, escorted him to doctor’s appointments, and tried to teach him how to relate to other people and how to get along in a college atmosphere. Unfortunately, Paul resented Brian. Paul didn’t like to hear the truth. Brian would try to counsel Paul in these situations and Paul wouldn’t have it. He didn’t like being told that his behavior was inappropriate, that there was a better way. He didn’t like that the world he was trying to fit into was far more complicated than what he understood it to be. Paul wanted the world to conform to his way of imagination. That’s why he resented Brian. I also think that he was reckoning with his autism. For so long, he didn’t seem to fully grasp his disorder. At UNCG, it was like he was grieving, facing the reality of autism. I call it Paul’s Dark Period. The autism itself made it heavy, like a gray cloud. The Marauder still hovered in the shape of the terror of Paul knowing what he was missing. 7 “Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. Usually, males are more severely affected by this disorder than females. Affected individuals usually have delayed development of speech and language by age 2.” | “Fragile X Syndrome.” National Institute of Health: US National Library of Medicine. Genetics Home Reference. USA.gov. https://ghr.nlm.nih.gov/condition/fragile-x-syndrome (accessed November 12, 2017).

26

ROOMMATES, BROKEN LAMPS, AND THE PORTENTOUS PARAKEET

“Don’t tell me the moon is shining. Show me the glint of light on broken glass.” —Anton Chekhov Paul had a rough experience with his first two male roommates. One was older, working on his master’s degree, foreign, married, and single minded in his focus. He was there short-term. He needed to get his degree and get back to his wife and son. The other roommate was eighteen years old, spoiled, far away from his family, and clueless. In addition, he had a drug problem. Between one roommate being from Egypt, one being from Saudi Arabia, and the third being autistic, the communication barriers proved insurmountable. The natural question here is, why didn’t Paul have better roommates? It wasn’t easy. The staff at Beyond Academics recommended that students not room with other students in the program. They found that too much contact with other Beyond Academic students bred contempt. There was already a lot of time spent with one another in classes and social activities. As parents and legal guardians, we had to do a little digging to find roommates. The younger roommate partied all the time, rarely went to class, and slept most of the day. Then his drug smuggling progressed to exchanges at the apartment. It all came to a head when the police arrived and demanded a search of the whole apartment. Paul’s bedroom and bathroom had a separate lock from the other two beds and baths, each tenant owning their own rental lease and sharing a living room and kitchen. We were shocked to learn that the police searched Paul’s bedroom as well. Paul was naive about the severity of the problem. Rob and I saw on the one hand that it was dangerous, and on the other that Paul being blissfully unaware was not necessarily a bad thing. The younger roommate was soon evicted. Paul finished out his lease and then we had to think about a better roommate situation for the next school year. In the meantime, Paul experimented. Curious about girls, he would see one at school or would pass a cute-looking emo type (jet-black hair, black makeup, body piercings) in the parking lot of his apartment complex. She actually could have looked like anything, any style, any type would do, as long as she was female and cracked a smile. He spent a lot of solitary time walking around the place, tossing a football or bouncing a handball. She smiled at him, saying hello and asked him his name. This was just too much for Paul. He thought that she liked him enough to be his girlfriend. He asked for her phone number and she gave it to him. She felt pity and compassion. This opened a can of worms. Paul called her and she answered once. She explained that she had a boyfriend and that she was too busy to meet with Paul. This didn’t send a clear enough message. Paul then knocked on her door. She didn’t answer at first and finally her big tall boyfriend answered and firmly told Paul that it wasn’t appropriate to continue knocking on the door and that his girlfriend didn’t want to see Paul. “Please leave her alone. Don’t come back,” he said. Paul cranked up on the frustration meter, and though I wasn’t there to see it, I pictured it in my head. I’ve seen it happen. He couldn’t move on. He couldn’t understand the process in social strata. After a first introduction, one must journey down a slow, winding route of getting acquainted. He didn’t see the need for small talk, colloquialism, or easy conversation. He is such a meaty person, a deep thinker. He’ll ask me or Rob, depending on who is free at the time, “Will you come talk to me in my room?” We know that when he asks this question, it isn’t just for a minute. There are no light niceties here, no pleasant conversation. It’s all heavy philosophical jawing. You’d better make it a few minutes more, because that’s what Paul needs. Even then, the conversation doesn’t move much further than the meaning of the universe. We say to him, “Paul, you can’t expect another person to have all the answers for you. Being in a relationship or a friendship is about being together, not always talking all the time. Life isn’t that heavy all the time. You make jokes about stuff, and talk about stuff that doesn’t matter all that much. In a way, I know it sounds backward, but when you can talk about light stuff and laugh a little, then the big decisions don’t seem so urgent.” Overwhelmed by having to read social cues, facial expressions, and mixed messages, Paul took to property damage and vandalism as a cry for help. He had done three things: he busted the fire extinguisher glass case next to his apartment door; he vaulted to the parking lot like a beast and pulled up a plank from the top of a picnic table with his bare hands, literally pulling the wooden board up and out, bowing and warping the wood, bolts and all; and then he went over to a lamppost embedded into a

sidewalk and yanked it from its moorings, right out of the cement base. He was a regular Hercules with an autistic temper. Soon after that I got the phone call. Throwing some clothes and a toothbrush in a bag, I headed out to Greensboro to soften the blows of rejection against my son. I didn’t have four-wheel drive and my reliable minivan was doing all she could providing the traction we needed for these rescues. I am not a mechanic but my stepdad is, and I’ve picked up a few things about cars over the years. My brake rotors wore thin and warped from all the mountainous driving. When I braked going downhill, it felt like going over ten speed bumps at once. I started out toward Franklin Mountain and unlaced the rosary chain off my rearview mirror, praying for traveling mercies. All those Hail Marys are like praying in tongues to me. When you don’t know how to pray, the Holy Spirit enables … Mother Mary enables. I was reminded of the time we went back to Greensboro after a Christmas break. We heard and felt a clanking noise, like a kid was hiding behind a tree and had thrown a rock under the car. Paul spontaneously said, “Whoa! What was that?” I’m always impressed when he reacts that way. “I don’t know, but I’m glad you’re with me, Paul; that I’m not driving alone.” When we reached the town of Franklin, after a long wind through mountains, I stopped at an oil and lube station to check on it. A mechanic put ol’ Vanna White up on the lift and discovered a missing bolt on a brake caliper. “That coulda been bad, ma’am,” he said, wiping grease from his hands on a rag. “It’s a good thing you stopped.” He added a missing bolt, charging me zip, but I handed him a ten anyway and we were once again on our way. That very afternoon, I’d just picked Vanna up from our local mechanic for a brake job, for we were facing a long trip. Relieved that it wasn’t bad, I sighed. Whew … thanks, Mary, I thought.

This time I was alone. I looked in the rearview mirror and patted myself on the back for emptying the expanse of car, folding the seats into the floor, because it was time to move Paul back for the summer. We were short a few days on the semester and because of Paul’s urgency, I coordinated with his teachers about taking his final exams via email. Everything in Paul’s apartment would have to fit in the back of the van. I prayed over the upcoming meeting with the property manager of the apartment complex. We’d pay for damages. Hopefully she hadn’t called the police. I pulled into the neighborhood near the university. The day was overcast, and come to think of it, the sun was rarely shining when I came to visit Paul. It was like the Marauder hung over us—a gray cloud embodying the crisis or the remains of the tempest that I was coming into as a first responder. The trees stood full in leaves now, like members of a family stolidly rooted—unemotional, yet knowing. I sought their shade as they waved gently from a late spring breeze. I wondered how old they were, how many generations of college students they’d sheltered. Every time I returned to Greensboro, I remembered that Calvin the cockatiel had flown away. It was a sad reminder, knowing that he was gone, and feeling sorry for him and for Paul. I couldn’t help but look around at other college students, making their ways to and from class, and wonder if their parents worried half as much as I did about Paul. They all seemed so self-sufficient. Of course, my other children had those neurotypical experiences, and I was grateful for that. If only I didn’t have that constant twinge for Paul. Was it possible that sometime, somewhere in the future, he would walk out of this tumult as from a misty dream? I didn’t even expect a full recovery or miraculous healing. I just wanted him to accept himself and learn to be content. It seemed too much to ask or hope. After enjoying music and solitude, I rolled into the parking lot at the apartment complex. I braced mentally and thought, Back on the clock. Break time is over. Lifeguard on duty. I half expected yellow caution tape, the kind seen at crime scenes. Then, looking toward a corner patch of courtyard grass, I saw the heavy lamppost lying on its side, green wires exposed, sticking out like broken guitar strings. The lamp looked personified, a soldier on guard who’d taken quite a hit. I was a little surprised that the glass globe wasn’t shattered. Just beyond that on the same patch was the picnic table, the plank yanked up and over. And there was yellow caution tape. My hand went up to my mouth as I gasped, “Oh my God.” And though prohibited to utter the Lord’s name in vain, it was a plea, a grasp to the Divine: Please, don’t let me be alone in this; please help my son. I pictured apartment tenants drawing a curtain aside, peering at my car, noticing my age, following me and my path upstairs to Paul’s apartment: “Oh, it’s his mom.” I felt violated, exposed, vulnerable, like those lamp wires that were never meant to be seen. In a strange way, the unseen force of the Marauder had swept in and demolished my son’s self-esteem and I wasn’t there to prevent it, to shelter him from the storm. Paul swung the door open wide and fast, his eyes bugging and saucer-like. I smiled at him and walked in, setting my keys and purse on the counter, attempting to settle into all this chaos. I hugged him for a long time. I could tell that he was glad I came. His roommate wasn’t home, and his door was closed. It seemed that Paul was always home alone. I walked into his room and greeted his parakeet, Spartan. This was the pet to replace Calvin, yet this slight seraph had too-big shoes to fill. Caged, smallish and twiglike, his cartilage claws wrapped diminutively around the wooden dowel. I’d never seen him eat, never chipper, never tweeting. I asked Paul, “How’s Spartan?”

“He’s al … right, I guess.” It was torture leaving that bird there with my son at the end of a visit. That little green feathered creature illustrated Paul, lonely, unobserved—even by God, it seemed. Spartan was a portent through which I saw Paul. I reminded God sometimes, You said not a sparrow falls to the ground without your notice—right, God? We met with the property manager. Young, mid-twenties, she greeted us with warmth beyond what we expected. I played to her maternity. She’d just had a baby, and I remember those days of nurturing. I remember being so in love with the baby, and it was contagious, like the whole world was in love with him too. I remember thinking how every soul needs a mother, and how many didn’t have a decent one. She had that new-mom look to her, like she cried at commercials. Radiant with new life, if she had to be away from her baby, then the work she did would get the same attention: detailed, conscientious, and homelike. Like her mothering was enough for the world around her, seeping outward to the corners of where everyone stood, to everyone she met. Her office was dim and calming. The overhead fluorescent lights were off; instead a lamp on a round table cast a balmy glow over the metal austerity of the desk. A moody candle burned next to her name plate and phone. A cloudy gray sky showed through the window. We just couldn’t seem to escape the shroud of cloudy skies. Her name was Ashley. A cheerful type but subdued, not too bubbly. I guessed she had a super high metabolism, because she was rail thin, wiry, pretty. She had an airiness about her, like everything on her to-do list moved, like cumulus clouds drifting into new forms, with wind and spinning earth. I approached her calmly, not wanting to add to her burden. I’d spoken with her over the phone earlier in the week, when the incident occurred, and I sensed that her wariness melted away as we smiled and shook hands. I still felt the need to plead for sympathy, to grovel a bit. Paul and I sat down in the two chairs in front of her desk. I then went on this rant, trying to slow my conversation speed, yet feeling like a NASCAR driver: “I explained to Paul that this was a serious situation, that property damage is a felony, that you could call the police and press charges.” Paul looked down as I glanced at him so that he knew he was included in the conversation. “If Paul were able to stay the last couple of weeks of this semester, he could do some work around here for you, to make restitution—I don’t know—like pick up trash, clean windows … sweep the walkways …” I trailed off there because we couldn’t stay and Paul was in an emotional crisis. But if she thought that it was a good idea, I might have found a way to make it work. But the reality was that we needed to go home. Also, what work would make up for what he had done? Then there was the flashing thought that even if this were a possible scenario, he would need guidance and supervision. I had no clear idea of how we could make this right. Ashley nodded, her hands folded and composed—she thought carefully of her response, realizing the importance of addressing Paul from a professional level. I leaned back in my chair, offering her the floor, a little afraid of what she would say. Ashley rested her slight forearms on the desk, her hands folded, like she was trying to keep calm and present composure. I imagined myself in her place. Measured, she said, “Paul, I like you. You have always been welcome in the office. I’ve told you that if you need someone to talk to, you can come here. It hurts me that you did this. I don’t want to call the police. This is serious, Paul.” I could tell she was containing herself. I could tell that she took Paul’s problems personally, in a twofold way. On the one hand, exasperated after all she tried to do as a property manager, her work was wasted. On the other hand, I could see that this was an introduction for her as a mother, that she was introduced to that sorrow of Mary, the one that deals with not being able to do a thing about your son’s suffering, nothing but be there and watch and drape him spiritually with the loving mantle of blue. It was similar to losing Jesus in Jerusalem for three days. It was a sorrow laden with grief that was equivalent to panic. It was the sorrow of watching—praying—and willing for her son to carry a cross that was too heavy for anyone else to heave up that long hill of life. A bit solemn, I know—morbid, even—but how Ashley handled the incident impressed me that her present station in life, with a newborn son, put her in the right place at the right time, for my son. That was a signal grace from God. I am profoundly grateful that God used Ashley to help us make the situation better when she had the ability to make the situation much worse for us. We both tried to impress upon Paul the possible consequences and ramifications of his actions. We talked about prison and how much the damage would cost, and that it would have to be fixed. We talked about the danger of what could have happened, how he could have been electrocuted, or cut himself on glass. We talked about how we were afraid that he would try it again and maybe do something worse. “Have you got an estimate on how much all this will cost?” I asked. I was prepared for it to wipe out our savings. “Not yet. I have your email and your phone number. I’ll let you know as soon as we find out.” We chatted on a bit about her new baby and how handsome Paul is. She couldn’t have been more kind. I shook her hand, conveying my gratitude as best I could. Paul and I spent the rest of the afternoon packing up his things and cleaning. I didn’t want to leave behind any more dirt with my son’s name on it. Broken pieces of Ivory soap lay on the bathtub floor. I pictured him breaking them as a form of stimulation, like karate-chopping bricks. I de-molded the tile, the toilet. Underneath the sink, a collection of plastic grocery bags filled the cabinet like balloons. The next morning we carried out some extraneous tasks, such as donating Paul’s weights to the fitness room at the complex and throwing away a skillet missing a handle. Every square inch of the van was

packed. Of course, Spartan the parakeet came home too, and we decided to keep him at the house. I ended up getting a female parakeet to bring some chirp back into his beak. Spartan perked right up. Before that, I’d never heard him chirp. Paul could recline his seat about halfway. No worries there. It didn’t take long for him to drift off into a deep slumber. He slept most of the way. With each mile behind him, we distanced ourselves from the trauma.

We’d gotten into the psychological protective mode of waiting for the other shoe to drop. Surely Ashley would forward us a terrifying estimate with the amount circled in red. I thought she was too nice to be true. I kept checking my email. I called Ashley a few times. She kept appeasing me, saying, “No, we haven’t got the estimate yet.” Weeks crept by. I quit calling and she never emailed me or called me with the damages. I guess she wrote it off with her property manager pen. When I think of Ashley, I can’t help but offer a prayer of thanks for her. May she and her son be richly blessed, and if she is ever in need of mercy, may she receive it.

Blessed are the merciful, for they will be shown mercy. —Matthew 5:7

27

“A GIRLFRIEND”

“Moons and Junes and Ferris wheels, The dizzy dancing way that you feel As every fairy tale comes real, I’ve looked at love that way.” —Joni Mitchell We signed a new lease in a different apartment complex. This was the latter part of Paul’s sophomore year. Currently, Paul’s roommate was from China and attended the community college near UNCG. He was super nice, but the two didn’t connect, outside of their apartment. We were in search of the right roommate, again, forecasting for the next fall. We were hoping to find a person with whom Paul could share a little more fellowship, a little more in common. We posted on Craigslist and left the option open to a male or a female, thinking that since Paul has sisters, he might respond better to a female. A woman, Maddie, answered the ad. Maybe a she would have more empathy than a he? She was familiar with special-needs kids and adults and was working on her graduate degree in social work. Paul and I met her at a BBQ restaurant. She made a cheerful and pleasant impression. Paul seemed fine, hopeful and talkative. But his demeanor belied his true feelings hid beneath an armor of autism. To Paul’s credit, he practices a huge amount of self-control—his emotions contained within masculinity. He’s like his dad that way. I didn’t initially see that Paul was churning with desire for this girl. But when it came time to exchange phone numbers, my intuition waved a red flag: I don’t know about this. I said to Paul, in Maddie’s presence, “Now Paul, don’t call Maddie ten times in a row. If you call her and she doesn’t answer, leave a message and wait for her to call you back. Do not keep calling her.” I looked at him fixedly, forcing him to look me in the eye. “Do you understand?” I wanted Maddie to understand too. The situation unraveled quickly. Like swiping a match to flint, Paul sparked to flame in crushing on Maddie. He called her and left desperate messages. He couldn’t wait for her to return the calls. At first she reciprocated with polite callbacks, saying things like, “Paul, I was busy. That’s why I didn’t answer right away.” But then when she refused to meet him because she had an appointment, he called her and laid down this edict: “You don’t know how good I am. You are supposed to be my friend. Then we are supposed to date. Then you need to marry me and have my son.” Maddie called me. I already knew about it because Paul had told me what he said to her. Of course, I told her, “You need to block his number and go your own way. This isn’t healthy or safe for you.” She did block Paul’s number, and we never heard from her again. That was the end of that. But it was only the beginning of Paul’s part of it. During the interim, when we were trying to get a handle on Paul’s phone behavior (literally phoning it in), Paul went into a rage. A few of them, actually.

As the academic year rolled to a close, Paul continued school through the summer for consistency’s sake. This was at the end of his second year attending UNCG. The problem was that the activities and clubs with which he had been involved through the fall and spring semesters all dropped off in the summer. He had way too much time on his hands. The following fall, just two months away, would have been the start of Paul’s third year. We would have been able to call him a junior in college. But you’ll soon see, that was not meant to be. Helping out with Vacation Bible School, I anticipated my cell phone ringing at any moment. It did as I helped a boy paste a shepherd on a felt board. It was Jessica, Paul’s student-life adviser—the calm, level one. She sounded a little out of breath, which was not like her at all. “Susan, this is Jessica. We have a situation.” “Hi Jessica …” The previous week, we had played phone tag trying to get Paul’s emotional behavior under control. His mentor, Brian, had already taken him to see his psychiatrist for some intervention. Jessica continued, “We had a group of students in downtown Greensboro for a field trip to the credit union this morning. Paul almost stepped off of a moving bus.” There was a shake in her voice. “He said that he had to see a girl named Maddie.” Things were out of hand. Paul was in meltdown mode. “I’ll be there in four and a half hours.” I packed an overnight bag and was on the road within fifteen

minutes. I called Paul on the way. “Paul, this is Mom.” He barked back, “Yeah? Whaddaya want?” “Paul, I’m coming to get you and bring you home. You need a break.” “I dooooo?” He drew out the ooo sound like a pleading question, letting relief sink in. “Yes, you do. It’ll be okay Paul, I’ll be there in a few hours. Don’t worry. I love you.” He exhaled, deflating like a sail, blown flat, shredded in a white squall.

I recited my Hail Mary prayers, thumbing ten beads back to a place of peace; praying for grace, wisdom, and that my minivan would hold together. I dropped it all at the foot of Jesus’ cross, Mary’s cross. I contemplated Paul’s previous crises, how they were connected to one another, like the neck bone connected to the collarbone. I thought, Another meltdown, another crisis. What are we doing? It hadn’t been that long ago that we had recovered from Paul damaging property. He hadn’t learned from the previous experience—like a door sprung on a hinge, he swung back to the same behavior, crossing the same threshold, with the same result. This has been called insanity, but here we can call it symptomatically autistic. I kept silent in the car, praying fervently, trying to focus on God and not my problems, promising myself that after an adequate session with Jesus and his mother, I could listen to Alison Krauss and John Mayer. Before I got out of the county, before going over Franklin Mountain, for the first time in my life, I saw a black wild hog. For real, not a metaphor. Man, was he ugly. He approached the right side of the road and went for it, prancing quickly across the highway as if on high heels. There was no time to think. I glanced in my left mirror, floored the gas, and swerved to the left lane and launched forward, beating Mr. Hog, who was about to fry as bacon on the side of my minivan. I veered back into my lane, white knuckles steering the wheel. “Whew.” What a mom does for her kids, I thought. I had to take care of a few things upon arriving in Greensboro. The first was to take Paul to see his psychiatrist. I’d called on the way and scheduled an appointment that afternoon at 3:30. What luck. The second was to move him out again from his apartment for the summer, and it was only June. The third was to decide if we were ever coming back again.

I couldn’t get there fast enough. I played music and tried to enjoy the time alone. I knew it would be a call to battle stations once I stepped out of the car. Crossing into the minutiae of city life requires an adjustment, a bit of culture shock. Entering Greensboro, the traffic pulsed with a collegiate urban beat. Students walked with earphones connected to cell phones and backpacks. A few cars bounced to the rhythm of beatboxing, the rumble speakers as powerful as their engines. I felt autistic, like all the signs were blinding neon; the traffic lights and beeping horns were too much. I felt the surrounding cars were too close, a little claustrophobic. I was used to the country mile. A bike rider swerved a bit outside his lane. Cars slowed, avoiding him. The impression it made was a flash, not a thought pattern. Just a part of the scene. The light changed and, pulling forward, I realized it was Paul on the bicycle. I made the sign of the cross as a prayer of safety for Paul. There were only a few blocks left to Paul’s apartment and I continued on, not wanting to further distract him by calling to him. After a few minutes Paul rolled up to me on the sidewalk, surprised to see me, although expecting me. I can’t remember if I asked him about safety. I don’t think I did because I felt deeply that his emotional and mental capacity were already hanging on by a frayed thread. Later I called Rob and told him about Paul on the bike. Rob responded, “You were meant to see that.” That was the lightbulb moment. Paul was at risk. He needed to be home with us. He wheeled his bike into the apartment because he’d had one stolen from outside his front door just a few months previously. He clenched his jaw and I thought it best to not overwhelm him with a lot of questions. We had the psychiatrist appointment to attend and quickly got ready. It was a hot June afternoon. We walked into a dim air-conditioned waiting room and sat on an upholstered bench. After about fifteen minutes, Paul leaned his head down on my lap, curled his legs up on the bench, and fell asleep. He didn’t care that he was twenty-two years old and how it looked. A subtle emptiness took over; the imagery of curling into the fetal position. It was too much. The psychiatrist appointment wasn’t very revealing. We talked about the appropriate way to speak to girls. The doctor mostly gave Paul a pep talk, telling him how great he was. It was a meager attempt. I got the impression that since it was a Friday afternoon, the doctor was ready for the weekend. He was making a concession, a halfhearted attempt at running damage control. Also, Medicaid was footing the bill. What is it they say? Don’t ever buy a car on a Monday or a Friday? The magnitude of Paul’s problems bowled me over. I thought that he needed something different and more remedial, like a complete social overhaul. He was like a toy running low on battery charge. Paul had exhausted his “real life college experience.” Rob, Paul, and I admitted gradually over the next few weeks that Paul would not go back to Greensboro. We spent the following day packing and cleaning. I scoured his bathroom, retrieving the broken pieces

of Ivory soap from the shower stall floor. The day after that, we woke early. Swiping the last few crumbs from a counter, we said good-bye to Paul’s Chinese roommate. I left Paul a few inches to recline his seat to doze on the way home. Making sure there was rearview mirror clearance, I saw that Paul’s whole life was jammed in my van. All his grief took up every square inch. I wanted to get home and make up his bed and tuck him into it. I thought, “We’ll take it one day at a time.”

28

THE WRITER/THE PRAYER

“You must tell the truth if your dialogue is to have the resonance and realism … and that holds true all the way down to what folks say when they hit their thumb with the hammer.” —Stephen King, On Writing After college, what next? It’s hard not to panic. Sometimes we did. Sometimes we stopped, in zen mode, in Rosary mode, and took a deep breath. We were back to trying again; looking into the black hole of the future. The Marauder still loomed. Throughout life, I’ve come to realize that you can’t focus on the evil, the negative. You can’t give the enemy too much credit. If you do, you can’t conquer the demons. The best thing to do is look up to heaven. So that’s what we did. Priorities. We gather around our dinner table. Rob suggests to our son, “Paul, why don’t you pray for us?” I look around at each face, guests and family. The food is good and hot. Each person prepares for the long haul of Paul’s prayer. I note our teenagers’ stirring facial expressions: What is he going to say? They smirk, thinking, Here we go, get ready for anything. As I read the nonverbal cues of each nod of the head, I am reminded that God doesn’t waste anything. I think of this as perfect training ground for my kids in learning tolerance, compassion, and humility. Paul launches with, “Jesus, thank you for this food, and help me to know how to talk to people. Help me make good decisions. Help us to know what we’re supposed to do about anything. Show me where you want me to live, and if I can build a house, and how to make friends and how to make conversation …” And he continues. Finally, we cross ourselves, and agree, with “Amen.” We believe. It really doesn’t matter what Paul says, whether he fillets his soul for all to see, brooding over philosophical life decisions, or whether he jumbles his words into fragments that only resemble sense. When Paul prays, people listen. He gives voice to what we all want. My son Paul has that gift of speaking what others think, or what they maybe never strove to put into words—that deep need that lives in the arcane ocean of the depths of hearts; those places Paul has led us all and where few are brave enough to venture. I’ve witnessed it on the faces of guests around our Thanksgiving table, how Paul just nails everyone’s gratitude and feelings. Maybe it is the autism, or just maybe God knew that Paul’s truthseeking temperament could handle such a cross as autism. I don’t know, but when he folds his hands before a heaping plate of gluten-free pasta and meatballs, the whole room gets quiet. This being so, I have learned that though God longs for my reach toward Him, it is I who need to hear myself pray. I need the sacred reading, the ethereal meditation, the soul-wrenching soaking. It is like driving a car. All the senses are called to attention. It is how I find my destination. My eyes are open, hands upon the wheel, using the blinkers for right and left, ears attuned for engines and warning. My nose is alert to fresh air, exhaust, and that identifying aroma of place, like the salty shore, or suburban concrete, or curvy mountain home. It is about engaging the senses, all of them. As I write, I almost used the word “infinite” for the amount of information that I receive, but that isn’t true, for I am a finite being. I can only take in so much. For Paul, it is even more complicated. Messages get diverted and rerouted, maybe altogether lost on some crowded freeway or down along an abandoned country road. Paul longs for relationship, for community, for belonging to manhood. He would love to be able to drive a car, build his own house, and date a girl. He observes the world from the outside looking in. Yet he also requires a lot of time and space to be alone, to think, and to stim. My Word program doesn’t recognize it as legitimate. In the autistic’s world, and for those who love him, it is very familiar. We have observed the repetitiveness of his quirky movements. These things calm him and help him make sense of his environment. He is sensory deprived. Paul gets lonesome. It is a conflict. The space, solitude, and quiet that his central nervous system seem to require are the very things that alienate him from society. His solitude isolates, depriving him of everyday sensory stimuli that humans enjoy and suffer. And though neurotypical humans don’t experience utter happiness from moment to moment, the stuff of life—its pain, struggle, work, play, love, and contact—is what keeps us from feeling so alone. My son suffers. Sometimes I wonder how long a person can stay in the same season of life. I wonder how long he can stand this state of being. Can he go on like this—this restless—this wanting? I hope for a change for him. Autism is puzzling. This wonky-eyed boy who flaps his hands, talks to himself, behaves this way for reasons not seen by the naked eye. Everything Paul receives through taste, touch, sight, smell, and hearing is pronouncedly acute. For instance, it’s cold outside and we wear mittens. Paul doesn’t like the bristly feel of the yarn. He would rather feel the snow on his fingers, to the point of numbing. The television messing up with static and white noise? We might get a bit annoyed, but this

garbled fuzz sets him off like a firecracker. A few years ago, I discovered the gift of writing. There is a cathartic sentient fluctuation to it. Like swinging at the playground, there is no other movement or expression quite like it (I learned that from an occupational therapist). And so is putting pen to paper. The mind thinks differently with pen in hand, scribbling on white pages, rather than typing keys on an electronic white space. I see that my son is discovering this for himself, and this is a very good thing. Paul goes through stages where he gets into a hobby or a habit. For a while, almost every time he went to the dollar store, he would buy himself pencils and a spiral notebook. It was subtle, but the journaling he did in the privacy of his room stretched him. Anything we can do to help him process all the inexplicable aspects of his long-suffering existence is a welcome breath of fresh air into this baffling disorder called autism. By writing down his thoughts and feelings, many things have happened. Even if what he has written is the same thing over and over again, such as when he went through the obsession of looking up various cities in the United States and then listing their names. Remember getting in trouble in elementary school and the teacher making you write “I will not talk in class” a hundred times? It’s like that. Small motor skill exercise, stress relief, and a development in vocabulary and conversation are benefits we’ve seen take hold. I found a writing opportunity for Paul. There is a publication called Pentimento Magazine. Pentimento (pen’ ti men to) n. An underlying image in a painting, as an earlier painting, part of a painting or original draft, that shows through, usually when the top layer of paint has become transparent with age. I had never heard this word, yet as soon as I read the definition, the imagery was apparent: comparing the world for a disabled person to that of the nondisabled. I got it. I understood what the publisher was trying to do. Artistic expression is subjective, and how much more so for our citizens with disability. In our efforts to try to teach them, to help them assimilate into conventional community, they end up teaching us a thing or two about creativity and going against the grain, against the status quo. The subheading for the magazine reads: “More than meets the eye.” And further down in the description, “Seeing beyond the surface.” If that isn’t a metaphor, I don’t know what is. I am seeing that original image in my son as he matures, a picture of his soul, and what I think God intends for him. We submitted a piece we titled “Happy.” 2/25/2014 I have never noticed about what else I could ever be to be all that very Happy in my LiFe. When I get a lot of junk inside my head I will Feel very bad and not be able to injoy my LiFe where ever I am. The world is never going to be perFect and I am never going to be happy all the time when I wanna be happy all the time. LiFe is part oF being Happy but LiFe has a lot more Feelings besides Happy. LiFe has anger. LiFe has stress, LiFe has some depression/sadness. I only like Happy. I do not like anger, I do not like stress, and I do not like depression. IF I got to have a lot of variety oF a couple of jobs I have never had that I have dreamed oF I will be happy For that. IF I had an Autism Society close to where I live I will be happy For that. IF I got to have Friends over to my house and IF I had a lot oF very Fun hobbies to do with a couple of Friends I will be Happy For that. When I received word that Paul’s piece was accepted for the June 2014 issue, it was thrilling. He was pleased, but I sensed a reticence in him. He fixed his earthy gaze upon the reality of the situation, that his writing, his name, would be shared in print for others to read and ponder. I think at first he was cautious, not wanting to be disappointed that it might not happen—that the hope and promise of it would not blossom into fruition. I could read it in his posture, in the pensive position of his hands, holding the original notebook writing. His writing is pencil legible, the letters blocky, filling the space between the faint blue guidelines. Each letter is uniform to the others. One letter must adhere to the next, to keep that precious connection. It is the way my son’s brain works. We all shared in the glorious news around the bedside of Paul’s eighty-six-year-old blind grandmother, Rob’s mother. Because of her blindness, she needed us. Immediately, she became more present with us then she had ever been. She never forgets a birthday. She spoiled her grandbabies with ice cream and trinkets. Her hair is never out of place, her dress impeccable—but a disease called temporal arteritis struck, causing severe headaches and then irreversible blindness. She cannot see so much as a dim light or shadow, only blackness. She notes, “Now that I’m blind, I now see.” Granny is a literary person. She taught high school English and is a voracious reader of classics. Paul explores many things, athletics, painting, drawing, and piano. Granny hears Paul’s efforts and appreciates them. She can feel his mood and confidence after he runs his nine miles through the woods. She can hear that he is a good writer, that he has something to say, as he reads his daily journal entries aloud. She sees without eyes. I see that sentience belongs to all of us, that we compensate through our other senses when one or two leave off. For Granny, her blindness forces her to look inward and into eternity, something that requires faith. For me, all my senses are in neurotypical working order, but I strain to pay attention, so as to not take this blessed life for granted. For Paul, in all his struggles and suffering, has brought forth from all of us a salutatory appreciation in practicing selflessness. He’s got it, that interior connection with the divine. We watch, we listen, we feel

… Paul’s prayers.

29

GUARDIAN ANGELS CAN FLY

“Does it seem like I’m looking for an answer To a question I can’t ask I don’t know which way the feather falls Or if I should blow it to the left All the voices that are spinnin’ around me Trying to tell me what to say Can I fly right behind you? And you can take me away.” —Norah Jones, “Nightingale” It was a hot day in July. My husband was out of town working. It’s always interesting when he’s gone. Something usually breaks, like an appliance. Once it was the water heater, another time the dryer, and twice it was the washing machine. By the fourth washing machine in sixteen years, I started naming them. I figured that if I personified this metal machine slave that I expected so much from, maybe it would build in some longevity, some loyalty. The latest washer’s name is Bubbles. I was also a full-time caregiver for my totally blind eighty-seven-year-old mother-in-law. She was bedridden and relied on me for everything: meds, getting dressed, meals, showering and grooming, clicking up her electric blanket, sending emails to her friends, reading classics aloud … it was, as my husband says, “a real program.” For much of this book, she also served as my “blind editor.” She taught me a lot about getting to the point and staying on point with writing. For a year and a half, writing this book, seeing to Paul, and taking care of Mom was my full-time job. On this particular day, Paul decided to mow the grass. He was twenty-five at the time. Up to that point, we always had one of our other kids on this chore. First Scott, then Mark, then Danika, then Katie. Paul avoided the sound of the mower, with good reason. Motorized objects were a scary proposition for us with Paul. We were also busy with many other things, so it was easiest to expect our other children to do their fair share of work around the house. We believed that they each needed a certain amount of responsibility for their teenage development. Then they all, one by one, started leaving the nest. At that time, Katie was busy working a summer job, and the others were at college or already out on their own. Beth was still too young. Paul wanted so badly to contribute, to do what everyone else was doing: driving, working, having relationships. It was a difficult time. He’d been regressing with toilet issues while my mother-in-law was living with us. Again, the Marauder took advantage of the stress of the situation and dumped it out on Paul. I won’t go into detail about what happened with these episodes, other than to say that he was acting out and didn’t know any other way to communicate the effect this multigenerational situation had on him. I saw it similar to how teenagers develop eating disorders. From what I understand, having experienced a touch of bulimia myself when I was in high school, eating, not eating, or exercising to excess all involved feelings of control. It is the one area in a teen’s life where they perceive they have choices. This was how I saw Paul and his troubles with independence and self-reliance. It was a brand-spanking-new lawn mower. We don’t use a side bag to catch lawn clippings. In North Carolina, the summers can be pretty humid. This, along with a lot of rain, causes the grass to clump and clog the underside of the mower. Often the mower cuts off. Then you have to roll the thing over to the cement and tap it up and down to loosen the muck, dropping it off on the driveway. This is exaggerated if the grass has grown too high. Also, with Paul, most everything is exaggerated. He would run the mower, zigzag, from one corner of the square yard diagonally to the other, cut the mower off, roll it to the driveway, tap, tap, tap—actually, bang, bang, bang—and then start it up again. In a way, it’s hysterically funny to watch him mow the grass. He bops along, wagging his head back and forth, shoulder to shoulder, sort of hopping up and down, and zigzagging all over the yard, like a Dr. Seuss pattern. He uses the mower like most people run a vacuum cleaner. I was in the garage repotting some plants and keeping an eye on him. Paul was cutting out the mower every few swipes and I became concerned that he’d break the thing. I approached him, saying, “Paul, you can’t keep turning off the engine. You might break it. That’s a new mower.” Then he got mad. Paul being mad just makes things worse. He becomes defensive and jerks his arms and legs around, making zinging noises. Also, rather than correcting the problem, he’ll do the exact opposite of what I’m commanding or suggesting. He had a hard time with constructive criticism and didn’t receive it well. I think there are

several factors at play here. One, he wants nothing more than to be respected as a man. Two, he is jealous and feels inadequate compared to his brothers and sisters who are younger than he is. Three, the autism often disables his capacity for rationality when it comes to learning a process. Four, he’s hard on himself and fights depression and low self-esteem, which is all complicated by the autism. It doesn’t matter how much I calmly talk and reassure him. He gets stuck. He fixates on the problem, rather than moving forward to a solution. He processes emotionally, rather than logically. Ironically, that is the opposite of what is thought of as autistic. But again, that’s part of the disability. The word that comes to mind is belligerence. He cranked the mower again. He walked fast over the yard, taking large steps, rigid in posture, jerking his head around, agitated. Then he cut the mower again. As the end of my own rope, frayed and unraveled, I barked. “Paul, do ya want to break it? That’s a new mower. If it breaks, are you going to buy Dad a new one? I mean, do you want to help or not?” Paul yelled back, “Only if you don’t act like Dad!” At wit’s end, I said, “Oh, trying to teach you how to do it?” “Yeah,” he yelled. “Okay, well, don’t cut your foot off. I don’t feel like going to the emergency room today!” I walked away. Back in the garage, I skipped the garden gloves, reaching my bare hands into the black soil, wanting something grounding, earthy, to calm my soul. I liked the smell, the feel of the dirt. I wished everything was that basic. All the sudden, I thought to talk to Paul’s guardian angel. Not growing up Catholic, the angels and saints have been an acquired bonus to my relationship with God and his family, his kingdom. It felt unnatural to pray this way. But when it comes to my Paul, I’ll try anything. “Paul’s Guardian Angel, I humbly ask that you speak to him, because I can’t get through to him. Thank you.” It was rather robotic, my words coming out of my mouth. I wasn’t even sure I believed. But then everything changed, and it started with me. I went about my business of digging and planting, holding the root ball steady within the center of the pot with my left hand, scooping with the other hand, mounds of soil in and around the plant, pushing the soil down firmly, with tender care. I always feel a sense of responsibility along with a dependence upon the goodness of nature to bless my efforts, to make the seed grow, to grow the tiny sprout into a fully formed plant, a rosebush, a Japanese red maple. I know it matters if I lay down pebbles for drainage, if the soil is dense and rich, fertilized, watered, and given enough light. Then there is the juxtaposition of realizing that it’s not all up to me. I guess that’s why I like houseplants and a few petunias on our front porch. It’s not just the beauty of the plant or the flower once it’s grown. It’s about tilling the soil and having faith, the size of a mustard seed. I didn’t check on Paul after that. My psychology totally changed. I settled down. I moved the plants back into the house and checked on Granny. After a while, Paul came in, his face relaxed. He was totally changed too. His demeanor was calm. He looked me in the eye and said, “Mom, can you come look at the grass and tell me if I did a good enough job?” The lawn was perfect. That’s when I realized that angels have wings. After that, I started contemplating memories in my own life when an angel might have had an influence on a good outcome. I wondered how many times I’d been rescued. I thought of my littles, romping around outside and in the house, and carting them around in the car. What would we do without angels? I began to call upon my guardian angel. I thought that these beings had to have names. Paul’s patron saint is St. Michael, the Archangel. Michael is also Paul’s middle name. Catholic teaching says that angels are superintelligent, but they aren’t like we humans. They aren’t delineated by sex, but they take on human form sometimes in order to better communicate with us. They may appear female or male, business or casual, athletic or artsy, down-home country or uptown urban. I read about angels in a book called Angels in My Hair by Lorna Byrne. A fascinating read, to be sure, and it helped me stretch my wings of faith on this subject. Stretching your wings is always a good thing, as long as your feet are firmly planted on the ground. With autism being the looming reality, there is not a concern there. So Paul’s angel goes by Michael. I named mine Ecclesiastes, after one of my favorite books in the Bible. Why not? Why not reach for the heavens when it comes to my Paul?

30

BEING THAT AWESOME MOM

“There’s a lot more to being a woman than being a mother, but there’s a hell of a lot more to being a mother than most people suspect.” —Roseanne Barr It’s July at the warehouse. Back at the loading docks, a twenty-foot ocean container backs up for unloading. Paul stands watching, his arms crossed over his chest, his feet planted outward, ready to work. He wears glasses now, and his beard, which he shaves every three weeks whether it needs it or not, is about half grown. He’s wearing a Carolina Beach vintage T-shirt. Before the driver backs all the way up and bumps into the rubber cushion bordering the doorway, he jumps out of the truck, bolt cutters in hand, to remove the seal on the container’s back doors. Paul is responsive as the driver hands him the seal with an ID number on it. If Paul has unloaded one truck, he’s unloaded a hundred, and he casually tosses the seal in the trash. The driver seems a little cocky, which really comes off as inexperienced. He says to me, “Ma’am, he didn’t write down the seal number.” If there is anything Paul doesn’t appreciate, it’s when someone assumes he’s made a mistake. If there is anything Paul can’t stand more, it’s making a mistake. He’s hard on himself if he thinks he’s missed some social cue or nuance. You know when a character in a movie is having a moment and other people talk about him as if he doesn’t have a brain, or he’s deaf? Then the character says, “Don’t talk about me like I’m not in the room, I’m sitting right here.” Well, it was like that. My husband hops off the forklift after dropping a stack of pallets for Paul and me to load with fourteenpound boxes of games, stacked floor to ceiling. There’s a bit of trepidation in both of us, Rob and me. You can almost hear the stress. As soon as the driver said what he said, Rob and I both knew that it would set Paul off. Rob adds, “We never do,” assuring the driver that the broken plastic seal in the trash is no big deal. No liability. But by then it’s too late. Paul won’t be consoled by his dad’s validation. The fact that his dad is authoritative in this situation makes him feel all the more inferior. Paul would chide himself after a minute about not being the one to say “We always throw away the seal.” He would have berated himself for not thinking fast enough, and at the same time he would gesture with a right index finger at his temple, tapping three times, as if to say, “Get it through your thick skull!” Paul does this in church all the time while listening to Scripture. We begin the drill by placing a pallet on the floor and stacking boxes, two rows of three, then one row of two placed sideways to fit. The next layer will reverse, and so on. No biggie for Paul here either, since he puts five-hundred-piece jigsaw puzzles together at his leisure. Paul is still ruminating on the broken seal. Even when he asks about it, “Are you sure it’s okay that I throw away the seal?” several times and I say, “Yes, Paul, it’s okay,” he’s still not convinced. A shadow of the Marauder hovers. We feel it. We see it. It envelops the air we breathe. And when we’re trying to get a job done, it makes it extra difficult. Think of classrooms you’ve been in, or a work environment. There’s always one. That one person who holds up the process or throws a wet blanket on the situation. The teacher must accommodate all the students. The boss must manage all the employees, even the one with the smoking addiction. The one that must have that cigarette break no matter how many customers are in line. That’s how I see autism. I look at my son and I see the Marauder as a monopolizer, “It” (I won’t personify as “he” because “It” doesn’t deserve that kind of billing). We modify for Paul. At the same time we have to be patient, yet firm. We try different communication tactics. Because Paul is so deeply sensitive, willing, and entrenched in perfectionism, the same formula doesn’t always work. Then again, sometimes the solution is very simple. That’s what you get with autism. The driver has since retreated to his air-conditioned cab for a nap while we unload. Paul starts stacking in fits and jerks. He’s sweating and practically throwing the boxes. I’m wondering if I should say something to calm the situation or if that will just make it worse. Maybe he can calm himself down. Then there’s the additional factor, when Paul reverts to the role of child to parents, yanking our chains to gain attention. So do we ignore it? Like when a two-year-old throws himself on the floor in tantrum, it’s best to just step right over the little beast and let him have it out with himself. One can only fight with oneself for just so long. But the thing is, Paul doesn’t calm down. He cranks up and becomes more physical. We’re in tight quarters and the corner of a box ribs me. Ouch. “Okay, Paul! That’s enough.” I bark. “Do you wanna walk home (two miles) and let Dad and me unload

the truck without you? You want me doing this alone? Quit acting like a toddler.” Then Rob steps off the forklift again, reaching the boxes that are just too high for me. “Paul, you know you make extra money unloading the truck, right? You need to calm down. Don’t hurt Mom.” Paul checks himself somewhat. His eyes stop for a second, a box in hand, pausing in midair. Gradually, very gradually, he settles. It takes a few pallets loaded to see the change. He’s smoother in his delivery. He’s placing rather than throwing boxes. By now, we’re dripping with sweat. I notice a spotlight glaring into the recess of the container. “Has that light been on the whole time?” I ask, blinded. “Yes, it has,” Rob says, assuring me in one of my frequent moments of blond mental lapse. Each pallet loaded, Paul and I step off the truck while Rob forklifts the pallet off the truck and wheels it back toward our shipping room. Paul and I get a short break before we haul another pallet on the truck to reload. I notice a box fan that Rob had discovered just a week earlier in an old storage room. The thing was an antique from the 1970s. I inspect the cord, making sure it’s not frayed, and see that the vents are grimy, but feasible. “Does this thing work?” “Yeah, it works. The wheels may not, but you can drag it over if you want, honey.” I wheel it over to the right spot, plug it in, and turn the dial to high speed. “Paul, come over here. Get some air.” Paul walks over and we take turns saying “Ahhhhhh” into the fan. Our voices vibrate in the box fan wind. “We used to do this when we were kids,” I say, laughing. Fort Lauderdale was hot as Hades. I remember stripping off a polyester dress at age six (in 1970) after hoofing it home two blocks after school. Mom turned on the box fan and I relive the sensation. Deja vu. Rob smiles at me as he backs up the forklift. Paul starts to tic again. I’m thinking, Oh, what is it now? He smacks a fist into the other palm, clenching his jaw. He wipes his glasses onto his wet shirt. Sweat pours from his temples. I revert to lifeguard mode. “Paul, show me some tae kwon do moves.” He likes this. He forgets his agitation for a second. My distraction ploy worked. Paul begins scissoring his right foot forward and sharply angling his arms proportionate to his legs. His hand movements are precise. It is a thing of beauty to watch. Its authority, its discipline takes over. I relax too. “Whew.” Rob drives up again after Paul and I are halfway through loading another pallet. Three more layers … Paul and I step off the truck and retreat to the fan again. “AAAAhhhhh …” From the forklift driver’s seat, Rob “blue eyes” me, sincere as always, and points his finger at my face. “You … are an awesome mom.”

31

SLOW WIDE TURNS AHEAD

“In examining the Corporal Works of Mercy, among the listed is, Burying the Dead. After thought and prayer, I realize that death is the most important time in a person’s life.” —Susan Anderson The hills of the hamlet of Hayesville layer over each other in both topography and sociability. Our map is a circle. Everyone we know here inhabits more than one role or identity. The vice principal is also the swim coach, also the adopted uncle. I was dance-mom buddies with the fifth grade teacher. Our nurse practitioner not only diagnosed each family member but also took some fabulous pictures of my son Scott, while both our sons played on the same Little League team. The boy my daughter dated was also my son’s close friend. We’ve lived here long enough to see people divorce and remarry, change jobs, lose or gain weight. The relationships change as we mature. We have come to terms with death in our community as well. Paul has experienced the death of a friend. His name was Matt. Matt was diagnosed with an autoimmune disorder at eight years old. Later it was clarified as lupus when he was in middle school. To understand how ravaging this disease is, all you have to do is see how it is defined: “lupus” comes from the Latin word for wolf. Matt was remarkably intelligent and mature compared to his peers. Suffering can do that to you, make you older and wiser beyond your years. He had an old head on his young shoulders. He dealt with bouts of lupus symptoms now and then, and as time went on, the flare-ups became more intense and closer together. An accomplished political science student at the University of North Carolina at Chapel Hill, he was always fired up about conservative politics and the current issues of the day. He found it enraging that too many people didn’t care about what was going on in the world. I worked with Matt’s mother at the elementary school one year. We are very good friends. Our sons Mark and Scott worked with Matt at a mission retreat center for two summers. They fixed up houses for the impoverished. Matt was also into music. He and his buddies played guitar riffs and took road trips to organic rock concerts in Atlanta. Matt was philosophical, calming everyone down when the tools ran short, or broke. He’d say, “Take the turns slow and wide, guys … keepin’ it slow and wide.” Maggie, Matt’s mom, told me that because Matt was drawn to Paul because he had an uncle who was savant autistic. Maggie surmised that Matt felt different too, always trying to fit in socially. He knew what it was like to feel like an outsider. I don’t think he recognized his own brilliance. If he did, he was not prideful in it. Even at my age, I felt the need to take Matt seriously in conversation, to have my game face on. Peers probably felt a bit intimidated by him. At the same time, he was genuinely a nice person, the type who looked like he was always smiling, even when he wasn’t. He came over to the house to hang out with Scott, and engaged Paul in conversation. An avid Atlanta Braves fan, Matt wore a baseball cap to shade his head and face. At the mission camp, he was the tool guy, organizing all the gear the work crews would need. He drove Red, a clunker of a truck, and showed up at work sites on the cloudy days. My son Scott remembers that Matt was elated on rainy, cloudy, gray days. This was fair weather to Matt, since that was when he felt good and didn’t have to worry about the sun’s effect on his lupus. Scott said that if you were inclined to slump because of the weather, Matt’s sunny disposition through rain and gloom just wouldn’t allow it. Scott saw it as a parallel to Paul’s life of living comfortably in the shadows of autism. One day, Matt asked Paul if he wanted to do something fun. It started a rather lopsided relationship. Paul expected friends to do what he wanted them to do. They’d play catch in the front yard with a football. Paul never gets tired. Your arm could be about to fall off, and he’s just getting started. When the catch game was over, they’d both descend to the basement to do jigsaw puzzles in Paul’s room. Just when I’d think the friend has gone home, because of the quiet, I’d tiptoe in and there they’d be, sitting on the unpadded carpet, working the five hundred pieces. At the time, Paul was ornery about being autistic. It was like he was in mourning. When he graduated high school, the world, as it does for most graduates, suddenly became a huge place. Because Paul wasn’t severe on the spectrum, we tried not to make excuses for him. We set the bar high enough for learning, without challenging him beyond what he could handle. I knew that one day he would reckon with his disability. We figured it would have to be when he was ready. That drastic doorway between high school and the big bad world swung wide to a lot of open-ended time, compared to the tight compartmented schedule of being a student. It gave him pause to ponder who he was and his place in the world.

Also at that time, he wasn’t reciprocal in socializing. He rarely initiated a conversation, and he never engaged in small talk. If asked a question, he’d give short, clipped answers. I’d ask him, “Did you have a good day?” He’d answer, “Half.” When he said it, the tone was implied as, “That’s all you get. I’ve said enough.” Later it became “Half, I did.” There was never any embellishing on a topic. Yes or no questions were not the way to go. We realized that we needed to ask in ways that encouraged him to describe situations. “What color was it, Paul? What was the weather like? How did that make you feel?” Even then, it was difficult for him. He’d speak in fragments; bits of a whole. Like a jigsaw puzzle, he chose the strong nouns and strong verbs. We’d piece them together. After Paul graduated high school, Matt got really sick. He was admitted to the hospital on August 15, 2012, for yet another lupus flare. Soon, he was in the ICU. Next he was in a medically induced coma to help his organs rest and recover. Meanwhile, back in Hayesville, friends rallied together to pray and do anything to help the family. We had a garage sale in the school cafeteria to raise money. The PTA called a prayer meeting in the school auditorium. We all cried and prayed, some of us aloud, some silent, all in agreement. We wanted Matt to be well and come home to Hayesville where he belonged. That’s what we wanted. God had other merciful plans. Matthew died in October 2012. Paul wouldn’t go to the funeral. It was like he walled himself off from the reality that Matthew was truly gone. I think it may have been too painful to think about it. Maybe his central nervous system couldn’t handle it. It reminded me of when he was a newborn, having those torrential crying spells in the afternoon. As an infant, he blocked out the world by crying. As an adult, he avoided difficult social situations. I also detected a disappointment in Paul. Matthew was the only person in his life, outside of his family, who would take Paul shopping. I think Paul viewed Matt’s friendship as a sort of “What have you done for me lately?” dynamic. He probably thought, “Who’s going to take me to get a slurpee on Thirsty Thursday at the gas station?”

Since that time, what strikes me is the growth we’ve witnessed with Paul. In the past, when Paul embarked on friendly relationships, his social maturity level was stunted. As much as he wanted friendships, he had trouble with the to and fro of conversation. He was trying to fill lonely voids within his own life, without considering the needs of the other person. We prompted him constantly to ask questions of Matt, like “How are you doing, Matt? Have you been feeling well? How’s school going?” Paul often grimaced at this, and when he asked Matt the questions, it sounded forced and unnatural. But he tried. He had to start somewhere. I knew enough about autism to understand that social skills can be learned. Empathy takes practice. After a few years of practicing friendship with other young men, Paul has come a long way. His telephone calls now start out with, “Hi Chad, this is Paul. How are you doing?” He will then express his wants and invite him over to hang out and work a jigsaw puzzle, and play catch with his dog Shep. “Can you bring your dog Happy to play with Shep?” When Chad can’t come over, because he has plans or is working, Paul is able to accept the disappointment a bit better than in the past. It used to be that he would get really upset when plans didn’t materialize. His social sphere has rounded out. There is more spontaneity in conversation, more understanding and give-and-take in his relationships. Within the setting of something so sacred as death, Rob and I see a great deal of courage in Paul. In honor of you, Matt, we’ll keep taking our turns slow and wide.

32

TOURING ON THE VAXXED BUS

“If it is made in a lab, it takes a lab to digest.”

—Kris Carr, Hungry for Change8

No other kid is like Paul. Yes, I’ve talked to other mothers whose children were more severely autistic. But there is no one like my son Paul. I know what you’re thinking. You’re thinking that I think my son is special. More special than any other young man in the world. Yes, in a way, I am. But it’s more than that. He’s high functioning, yet socially stunted, in a perfunctory sense. He’s handsome, somewhat grown up in countenance, yet he looks nineteen, rather than twenty-seven. He’s funny, in a dry, wry way, yet is the most serious person I know. He’s athletic, shooting a hundred baskets at a time, yet he’s never played on a team. He can ride a mountain bike like a boss, but can’t drive a car. He is pious and spiritual, but so far, there is no place in the church for him as a monk. He’s autonomous, but once had a homeless man talk him out of $20. He’s grown pretty articulate and controls his verbal autism, but I hear him right now, as I write in my bed, down in his room in the basement, making his springing noises when no one is around, because he can. He’s verbal, yet when he gets agitated, his words break off into pieces, like a jigsaw puzzle. He is unique. As his mother, I’m very familiar with this wonderfully complicated human being. Was it because of vaccinations? That’s always the question people ask. What is the big fat answer? Probably … hmmm … I’m not sure, but I don’t rule anything out, and if I had to do it all over again, I wouldn’t have vaccinated Paul. How’s that for an answer? Here’s my opinion, my unadulterated, biased opinion. Not everyone’s physiological constitution is the same. There are so many variables. If everyone could handle the same aggressive schedule of vaccinations, then answer me this: Why are there allergies? Why predispositions to disease, or tendencies to all types of maladies? I remember Paul screaming on the changing table after vaccinations. I have since heard through the Mom grapevine of the “DTaP scream,” which medical professionals denote as inflammation of the brain. There were so many, right on top of another, it seemed. And three disease inoculations in one shot! It’s crazy. My mom says that when I was little, during the sixties, I was injected with very few shots, but when I got one, I’d get pretty sick. Ruminating on the vast vague vaccination issue, I thought, what do I know about science? I imagine white lab coats, black-framed glasses, tight hair buns, and no smiling faces. I imagine suits around a conference table, signing the dotted $$$ line. I imagine scandalous phone conversations in dark corners. I imagine buildings with windows, but no faces. Looking glasses to see into people’s homes, pocketbooks, but not into their hearts, their individuality. Like George Orwell’s 1984. I am muddled and muffled, shuffled among the mix of mothers who just want to do right by their children, tugged by fear. Fear of what if. What happens if I don’t vaccinate? My little one will contract the measles and die. She’ll develop a secondary infection and end up in the hospital, with brain damage. But what is autism, if it isn’t brain damage? I can’t help but think that the love of money has everything to do with this epidemic. It always comes down to the root of that evil, of all evil. We preach to our kids, don’t do drugs, yet we are coerced into vaccinating them aggressively during infancy and toddler years. It doesn’t make sense to me. Especially when I firmly believe in the built-in immune defense system of breastfeeding. I mean, for heaven’s sakes, think about it. A newborn doesn’t see very well, but he can see his mom’s face perfectly, from the crook of her arm, as she holds and feeds. Isn’t that so naturally godly? I can’t help but think that vaccines promote larger agendas. I know, in my gut, that mothers offer the strongest physiological immunity as well as spiritual and cognitive immunity. Here’s another thought: Isn’t the basis of science to question why and how? Then why do pro-vaccine scientists declare the vaccine issue immutable? Why is their philosophy so certain? Why isn’t there ongoing research for drugs that are constantly evolving and accumulating? Also, if the vaccines are safe, and there is no risk, then why did I have to sign a form releasing the health professionals from liability? Our first three children are sons. After having Paul, Scott, and Mark, I started investigating

vaccinations. I was on the granola-crunching bandwagon of cloth diapers, homemade bread, homeschooling, and the back-to-basics way of mothering. When our first daughter, Danika, came along, I decided to hold off on vaccinations. I was home, breastfeeding, buying organic food from a co-op, using homeopathic concoctions from health food stores for colds and viruses, and trying to nail down why we were so sick all the time. The Hampton Roads area of Virginia is dank, frigid, and moldy in the winter. Someone in the house was always either coughing or having a runny nose. Every winter it was the same. I think now that some of it was necessary in building their immune systems for life—but you know, when you have symptoms, you try to fix them. I figured with Danika, less is more. So I didn’t vaccinate. Then she contracted pertussis, otherwise known as whooping cough. She got it from another family who also didn’t vaccinate when I weaned her so I could go on a trip with Rob. She was thirteen months old. She could walk, and I think this helped her cough. Her little eyes would bug out with these coughing fits. I had to bend her over my forearm underneath her torso, and beat on her little back, so she could cough up mucus. It was scary. I thought, What have I done? She did recover after about six weeks. So, I point back to breastfeeding and keeping my children close. If I hadn’t weaned Danika and hadn’t separated from her for a long trip, she probably wouldn’t have contracted whooping cough. But I was there for her as only a mother can be, and she didn’t develop a secondary infection. I pushed water and prayed a lot. Then when she turned two, she was out in our garage, barefoot and stepped on a thumbtack. Panicked, I thought again, What have I done? She hadn’t had a tetanus shot. I’ll never forget her sweet little voice saying, “I tack my foot.” That’s when I decided to start vaccinating, but I was mindful and followed my own timetable, spacing out the shots much further apart than the CDC recommended. The first shot for my daughter was the DTaP. The single tetanus shot was not available. I was still leery. To use the word “cautious” would be an understatement. I didn’t want to err on the side of negligence and I realized that with vaccinations, I was taking a risk either way. I just wish that the CDC would quit covering up and do a lot more research. I wish they would separate these virus vaccinations into single-disease inoculations. Why won’t they? Money, it’s a gas, as the old Pink Floyd song says. We did the same with our other two daughters, Katie and Beth. In 1997 and the following years, and when we moved to North Carolina in 1999, and in 2000 when Bethany was born, we had to go to the community’s health department for vaccines. The nurses were aloof and suspicious. I could feel it. Maybe it was my imagination, maybe my fear and lack of confidence in taking this huge chance with the health of my children, but I was the one taking it. I was the one who owned the responsibility of autism with my oldest son. Never once did a nurse or doctor encourage me to not vaccinate, to hold off, to be restrained about vaccines. “They’re safe and outweigh the risk you take, not vaccinating,” they would say. I felt their judgment when I brought my high-strung Katie in for a late DTaP and MMR at different times, while she screamed her head off for fear of the needle. What potent moments those were! Fear, judgment, wanting to do right by my babies, praying all the while that God would protect them from disease and autism. It shouldn’t be that hard, is what I’m saying. I can’t help but think of when Jesus carried the cross up the hill, and the women wept and followed him. He said, “Weep not for me, oh daughters of Jerusalem, but weep instead for yourselves and your sons and your daughters.” Luke 23:28. Oh, that verse, how intense! I think we can apply it to our difficult age. St. Maximilian Kolbe, patron of our difficult age, please pray for us. And to render unto Caesar? How much can we give the ruler of this world? That’s why I have become an advocate. It’s my job, my calling, my responsibility. Lately, I’ve taken these memories before God when I receive Holy Communion. I submit all these addendums of my Paul to the King of the universe for healing and restoration. Why not? I have nothing to lose. The Marauder already stole it. In September of 2016, I drove south to stay with my friend Brenda Connolly in Tampa, to speak at a fund-raising event she was having for a school called FACE, Florida Autism Center of Excellence. She invited me to speak alongside a talented performing poet named Wally B. Jennings and the fabulous phenom Kim Stagliano, who is a nationally recognized author and autism advocate. She wrote the book All I Can Handle: I’m No Mother Teresa: A Life Raising Three Daughters with Autism. She also manages the web site The Age of Autism, which I think is a brilliant title. It is the banner under which we march every day. The day after the fund-raiser, we decided to check out the Vaxxed bus. The bus travels the country, gathering interviews with people who have been injured by vaccines. The Vaxxed documentary is an investigation into the CDC’s destruction of a study linking autism to the MMR vaccine.9 We drove through the crowded souvenir town in and around Tampa’s intercoastal area, famous for its pirate-themed bay. The bus was black and ginormous. Surreal. I felt like I was in a movie, not living a real life. Like a dream. I’d never been to an autism conference. I’d had little opportunity to pick brains. So when my friend Brenda and I drove from Tampa over to St. John’s Pass at the beach to see the Vaxxed bus, I had no expectations or agenda to run through. I just had to see it. I wanted to talk to people and ask them questions about their experiences. The bus, with its bold XXs in the middle of the word, screams alarm. It should. Somebody needs to wake up on this issue. The black paint, jagged with the word VAXXED in red and enhanced with thousands of signatures in silver Sharpie, demands attention. We parked and walked over to the bus, its massive black presence. It almost looked like a poster for a horror movie. With its edge serrated graphics, it looked like

a rock star’s tour bus. And where there are rock stars, there’s talk of drugs. I hadn’t even seen the film yet. But I knew about it. I was afraid to explore its theories and evidence. I was afraid to hear and see the testimonies of so many parents. About half a dozen women in black Vaxxed T-shirts stood under a canopy outside the door of the bus, sweating, with a few children playing close by. They all had that waiting look, trying not to slump but also looking like they were waiting at the DMV. Brenda and I walked up, me smiling and probably overexcited to see such solidarity. I was eager, because I’d never been around this much camaraderie when it came to autism. I’m a blonde, and I smile and laugh a lot. I’m a warm and friendly person and have no problems striking up a conversation. I’ve never met a stranger. I started handing out my business card that has the words “Author/Autism Advocate” printed on it. I noticed one woman with jet-black hair look down at it, and quizzically look back at me, like, Am I supposed to know you? Trying to think of what to say, it was difficult to know where to begin. I said, “I have written a book and I’m trying to get it published. It’s about my son, Paul. He was born in 1990 and is mildly autistic. I wonder about vaccines.” Then I asked one woman named Lexi to tell me her story. She went into her spiel about vaccine injury, her personal story. I was intrigued and made a mental note to remember to pray for her and her family. I still do. Brenda stood back and watched me hold court. Referring to it later, she said, “I just stood back and thought, ‘Let her go.’” I tend to talk a lot, but I have learned to listen, too. I wanted to hear what these women had to say. They were all waiting to be interviewed on the bus. These interviews would be compiled and used for future documentaries. I had nothing prepared, and wasn’t interested in being interviewed. I didn’t feel passionate enough about the subject to take up precious time on camera with the producers, and I knew it would be a long time before they got to me anyway. The other women were obviously determined to tell their stories. They needed to be heard. We’d been standing there in hundred-plus-degree heat for about thirty minutes. All the sudden, the door opened, and I could feel the air-conditioning breeze out on my face. A tall blond willowy woman stepped down, dressed in heels and a cool blue sheath dress. I happened to be standing right in front of the steps, facing her. She opened her long thin arms out and hugged me, as if we’d been friends for years. She wore a simple gold cross and spoke in an English accent. It turned out that she was one of the producers. I handed her my card and she shuffled me up on the bus. “Come on in, darling,” the words rolled off her tongue like English tea. If it had been cooler outside, I’d have expected crumpets and cake too. I stepped right up and realized that there was barely room on the bus for me, let alone the deserving ones waiting to be interviewed, and the crew itself. I backed up into one of the captain’s chairs where a camera guy had his legs straddled over the armrest. “Oops, I’m sorry,” I said. “You’re good,” he said. There was another woman seated on an upholstered bench with blond straight hair, her makeup fixed, ready to be interviewed. She wore a black Vaxxed T-shirt. A heavyset lady was next to me, standing, sweating, and shaking with nerves. I thought she was going to pass out. The one on the bench spoke low, yet indignant, “I’ve been waiting.” I don’t know why I thought I could help the situation, but in my validating nature, I whispered, “Tell them, speak up.” The English producer stepped back in from the back of the bus and turned her attention to the heavy lady and said, “It’s okay. Would you like some water? Take a deep breath. Relax.” Passionate about what she was producing, I wondered how she got into this business. Somehow, I guessed that she was personally affected by autism. She’d conducted interviews a thousand times before. She had all the time in the world, and she wasn’t sweating. I remember telling the producer about my son, and that I’d written a book and was trying to get it published. I told her that the title was Paul’s Prayers. She smiled warmly and pointed to a sign beside an AC vent that said PRAY BIG. I smiled back. There was nowhere for me to go, and I didn’t want to upset the apple cart. I figured that the interviewer didn’t mind me being there and if I opened the door to leave, it would’ve upset the whole process. Instead, I stood there, quiet, and tried to stay out of the way, at least with my eye contact and speech. The producer calmly settled the woman down and held a microphone under her chin. The camera guy positioned his lens. “Just tell your story,” she said. I turned my face away from the camera. I felt so bad for the woman being interviewed. I pulled my Rosary beads out of my left pocket, as a weapon, like drawing a saber. I placed my hands laced with the Rosary beads underneath her forearm, like a safety net, and whispered prayers. She had quite a layered, complicated story. She was going back to when her teenagers were babies and how trauma from vaccines had caused so much mayhem. The next thing I knew, the interview ended and the door opened. The woman with the black hair centered on me, stark as a gun barrel. She said, “You need to get off. We’ve been waiting.” I smiled back at her and said, “Sure.” Brenda said that she was laughing to herself when I initially entered the bus. She said, “You should’ve seen their faces. They all looked at each other, like, ‘Who is she? We’ve been waiting! Who does she think she is?’” Of course, they were aware that Brenda was my friend, so they didn’t say what they really thought. I’ve concluded that vaccinations may very well be a large factor in my son’s autism. I also have decided

that as far as environmental factors, those being the food we eat, the medicines we take, the chemicals we use, that “basic and few” is a good rule. Simple is best. When it comes to ingesting food and drugs, natural is right and synthetic is wrong. Less is more, except when it comes to prayer. You can’t pray too much. Prayers rising like incense, a constant smoke permeating the heavens, heard with bleeding intention, are not in vain. Every Hail Mary, every Our Father, every sign of the cross is heaped upon another. God hears. Then Brenda and I went to lunch. I wasn’t interviewed and I didn’t sign the bus. But I felt privileged to see what Vaxxed was all about, and I am supportive of the cause. I pray every day. I PRAY BIG. 8 Disclaimer: I am unaware of Kris Carr’s position about vaccinations. I am not assuming she is anti-vaccine or conservative in her opinion. I simply like the quote and see it applicable to the science of vaccinations. 9 To learn more about Vaxxed, visit http://vaxxedthemovie.com/about/.

33

BREAKTHROUGH

“Then the Lord said, ‘Go outside and stand on the mountain before the Lord; the Lord will be passing by.’ A strong and heavy wind was rending the mountains and crushing rocks before the Lord, but the Lord was not in the wind. After the wind there was an earthquake, but the Lord was not in the earthquake. After the earthquake there was fire, but the Lord was not in the fire. After the fire there was a tiny whispering sound. When he heard this, Elijah hid his face …” —I Kings 19:11–13 There is no exclamation point at the end of this word and chapter title, because I didn’t want to give the wrong idea. I didn’t want you to flip toward the back to see if there was some miraculous cure (something I, an autie parent, have been known to do). The word “breakthrough” is powerful on its own, without the exclamation point. What constitutes a breakthrough? It’s the little things, the details. It is the signal graces that can be so subtle that I miss them. Do you hear that loud swishing sound flying over my head? For a mother, our small victories are just that—quiet, yet resolute. My privilege is that I get to witness them before the whole world does. I wonder if Paul feels the same glory when things are a little lighter, when he’s more with it and spontaneous. Does he recognize this gratification? Something tells me that he doesn’t, but that doesn’t mean that he won’t in the long run. It will take time. Somewhere down the road, he’ll receive it. It’s like Holy Communion. We don’t take it, like a thief. We receive Him, Jesus, like a gift. I hold out that hope. We strive to work through Paul’s feelings so that he can recognize his successes. It will require some tenacious cognitive plowing on his part. We’ll get there. He’s got to change his moods by changing his thought patterns. Wisdom over feeling, logic over the sentimental. It came to me: what Paul needed was cognitive behavioral therapy.

It had been a tough week for Paul, and in turn for Rob and me. Heck, it had been a trying couple of years. We were between Medicaid and Medicare coverage because of a change in Paul’s Social Security status. He’d been on two meds, Prozac and Abilify, for depression. He’d been on both meds for three years. We were never quite sure if the medicine was helping or harming. Because Abilify was so expensive if not covered by insurance—to the tune of $800 a month!—we dropped it. Even though Medicaid had covered the cost, $800 seemed a little fishy to me. The withdrawal symptoms were crazy. Paul quickly developed tics in his mannerisms. His hands would flex, distorting. His head would jut forward. He was jumping and flapping more, jerking. He talked about suicide. Fire-faced, he’d growl, “I want God to turn me off!” As I say, we were never quite sure about the meds because he exhibited manic behavior sporadically anyway. We suppose now that it was the Abilify all along. But let me be clear: Paul needed to learn that medicine only helps, it doesn’t fix, doesn’t cure. Honestly, we all do it. We think that maybe if we just swallow a pill, the headaches will all go away. Placebo effect here? Yes, it is a real psyche-out. When the episodes get so intense that you feel like all the air is being sucked out of the room, there is a certain mental relief of imagining that a pill will be the breath of fresh air. Rob and I played tag when it came to managing Paul. Rob would take Paul to work with him in the morning to assemble games and unload an occasional truck. At lunch, they’d come home and Paul would be with me in the afternoon. He would be fine for about an hour, as he would eat a huge lunch, tater tots, three hot dogs, or a pizza that he fixed himself. He’d descend the stairs to his room in the basement and nap. Then he’d come back up, volatile, belligerent, reliving some memory that angered him, as if it were happening right now instead of in a distant past. That thought would pull a trigger and blast him into a “woe is me” mood. “I don’t know why I’m here.” “Why did God make me?” “I want to know where to be!” “I don’t know how to be!” “I want you to pray for two buddies for me to just show up here at the house!” “I want to build my own house.” “Is there ever enough money for that?”

“Is that too much money to build a house?” This was how it went at some point every day. The Marauder summoned the same conversation, every day. If Paul is in a good mood, it’s great. We sigh with relief. We live moment to moment, mood to mood. Is “a roller-coaster ride” too cliché? Because that’s what it is, highs, lows and in betweens. When he dips low, it is a free-fall plummet. He’ll call a few friends and no one answers. Weekends are especially hard. He’s reminded how little he has. (This thought is a lie from the Marauder.) I didn’t know how to help my son. I felt pressed, like a brick wall, closing my spirit up inside of it, brick by heavy brick. I could feel the cortisol shooting through me as a wall to sustain the mental blows of my son’s tirades. I came about this close to sweating drops of blood. Well, okay, that’s a bit melodramatic. Let’s just say that my stress bucket was brimming full over. I thought I couldn’t take any more. It was as close as I could manage to Jesus’ Agony in the Garden. But it was my agony, my cross, my son’s cross. A sword will pierce your heart. I think what made these moods extra dark was that there seemed to be no end in sight. I felt like things would never change, never get better. So did Paul. Then it dawned on me during prayer one day. I remember it like a Kodak moment. I wondered how Helen Keller felt. I wondered how her teacher negotiated Keller’s complexities, how she got through to her pupil. Then I thought, if Anne Sullivan could reach a blind and deaf child, certainly Rob and I can help Paul. I saw similarities in Keller’s muteness and Paul’s autism and obsessive behavior. They both are sensory disorders. I was suddenly inspired. I felt a deep pride, a realization that God had granted me a challenge, a mission. I felt honored that He chose us to carry this cross. Many times I’ve mused over this and thought, It takes special people to parent special needs children. Often, that thought dilutes into a trite platitude, generic, cliché. But this time it was more real, more down to earth, more gritty. I have no choice but to get my hands dirty, and I am certainly not afraid. Even if I am, my husband likes to give my daughters and me some playful encouragement when one of us feels overwhelmed by a situation. He quotes Debbie Reynolds, “Come on girls; chin up, boobs out.” There was another issue tangled into this mesh of thinking, another splintered strain knotted into the Marauder’s web. These meltdowns Paul has are complicated. Needless to say, Rob and I are often at a loss for how to console Paul. We talk and listen to him and try to let his dismal cloud drift away. He may go running or take a nap, both tactics he uses to escape from self-imposed torment. It happens every day at some point and we are used to these episodes. We know them well, like an unwelcome houseguest who stays too long. When will he leave? Again, there was a soft epiphany. It wasn’t a lightning bolt accompanied by a thunderclap. No, it was a whisper, a brush of a feather. Was it only my imagination? Did I really hear that? Yet I’d been searching, listening, eyes peeled, ears pinned back. Early one spring day, I’d dug in the dirt, planting flowers, sweating, clawing and prying at the edge of rocks, and thought, What is the root of Paul’s problems, God? Help me see. I’d remembered a parenting book from when the kids were little and clamoring. I was so tired of the usual “put them in time-out” mumbo-jumbo. I needed something with teeth. I found a book not promoted in the mainstream but instead in Christian homeschooling circles. It was definitely old school in that it discussed problems of misbehavior in children as character traits, negative character traits. The author’s philosophy was that children aren’t born with character, good or bad. They must be trained. It is the parent’s responsibility to help the child form good character. Because of the sinful nature that each is born with, along with the purity of his image from God, the side that is nourished will become the stronger. The author discussed problem behaviors such as lying, biting, stealing, and having tantrums. He said to take the worst one (pick your battles) and work on that one. If lying is an issue, then focus on that one. Don’t let the little angel get away with any lie. Not a bald-faced one, not a white one, not a pale one, not one of omission. Make sure through punishment that the child knows that there is no confusion on what honesty is and what is falsehood. The child must have a clear understanding of what is right and what is wrong. I agreed with and needed this philosophy. I needed to define my standards for parenting my six children. It was a matter of survival for me and a priority that they all turn out to be pleasant, contributing citizens in our family, community, and society. It held spiritual implications, too. I wanted my children to know God. In a matter of a few minutes, these old thoughts came back to me. I saw myself, a faded sepia image, thumbing through the pages of the book, underlining Bible verses, getting the gist of this helpful guide. It was the buoy that my soul clung to as I was drowning in the sea of motherhood. Then I pondered Paul’s episodes. I concluded that his suicidal gasps were not just a cry for help but a way of gaining control and initiating a power struggle. Then and there, I decided to refuse to be drawn into a power struggle. I would help him instead by not allowing it. The next time he bellowed, “Why did you have me?” I stood my ground, hands on hips, looking straight in his beautiful yet raging hazel eyes. We were in the kitchen. I said firmly, “You will not talk to me that way. Go outside. You can yell all you want, outside. Go hit the punching bag. Yell at the sky, yell at the mountains, yell at God. He can handle it. Go kick the dog, if you want to.” I didn’t actually say that last one. (He would never do that anyway.) But I was that distraught. “When you are calm and have changed your attitude, you may come back in.” It took some cajoling. I am not afraid of my son, though he is physically stronger than I am. His bullying was expressed through his words, his slap of fists against one another, his slamming of doors. I was tired of it. Paul was too.

Little by little, each time a situation came up, I took it on. I didn’t allow him to wallow in his fury. He would go outside, after a bit of insisting, and I didn’t budge. Once I sent him out three times within the span of forty minutes. Another time we were coming home from a track meet where the girls competed. It was late and we had decided on pizza and were on our way to pick it up. Paul wanted us to stop at a gas station so he could buy his customary soda and candy bar. Rob said, “Paul, we’ll be at the pizza place in ten minutes, you can get a drink there.” Then it started. Paul made these loud clicking sounds with his tongue, and smacked a fist into the other palm. Inside the car, it was amplified and earsplitting. Rob said, “Paul, please stop. It’s distracting. Do you want me to wreck the car?” I turned around sharply. “That’s it! You’re not getting a drink. We’re not stopping! Forget it. We are not rewarding this kind of behavior. You stop it right now and if you can control yourself, when we get to the pizza place, you may have your drink. If you don’t, then forget it. It’s your choice.” His eyes flashed recognition. It was like I saw him reason as a conniving kid who receives a spanking. It was what he needed. He seemed relieved. He stopped gnashing his teeth. I saw in his calmed countenance, Oh, I don’t have to act like that anymore. For the rest of the drive, Paul was quiet. In another week Paul saw a new counselor for a consultation. His name is Jim. After an introductory session with Paul and my expressing my concerns and wants for Paul, Jim suggested cognitive behavioral therapy. He explained it in the way I received my epiphany. “We need to work on changing his thought patterns to change his outlook and behavior. Behavior modification therapy works with this as well. Address the behavior, change the thinking, change the feelings.” I was affirmed. I think we’re onto something. If Paul is prevented from acting out and speaking out with his parents as an audience, then we remove the trigger, the argument. If Paul goes outside, he can only fight with himself for so long before the tirade disperses. I would call this a breakthrough. I don’t care if Paul stays autistic, and it is naive to think that he won’t. I don’t care if he doesn’t have a high IQ. I just want him to accept his life as a gift. I want him to learn to be content. If we do that, we will have received a miracle. Paul prays. He worships in Mass and recites the Nicene Creed and the Our Father with vigor. He puts a few dollars in the offering plate. Sometimes he sits beside a family friend. Blessedly, our friends at church are not spooked by Paul’s autism. Paul sits on the end so that if he needs to use the bathroom (because he drinks copious amounts of water), or if he gets upset, he may leave the sanctuary. We may have to give a donation and buy out the pew—whatever it takes. God works in mysterious ways. Theology tells me that in heaven, the last will be first and the first will be last. Paul’s mansion will be spacious and plush. There will be enough room for all of us to dwell and on the end of the pew, there will be a brass plate engraved with the words, IN HONOR OF PAUL ANDERSON’S PRAYERS. Just one more breakthrough toward the end of the story. We’re not there yet.

34

SENSORY HUMOR

“The world is a comedy to those that think; a tragedy to those that feel.” —Horace Walpole When does one actually become an adult? It is a relative term, adult. When one turns eighteen? Twentyone? This age, twenty-one, is frightening for parents of autistic young adults. The services, educational and otherwise, virtually stop at the age of twenty-one. And then what happens? They age out of childhood, even though in many ways they never leave its realm. Yes, there are vocational rehabilitation services. There are support groups. There are continuing education classes at community colleges. That’s all well and good, but still it lacks. And as I sit here, I can’t help but think of the emptiness of this writing, the lack of substance that parallels the experience of my son, the blank page, for virtue of having anything to write about in his adult life. He needs friendship —he needs fellowship, conversation, and interaction. All these things are difficult to provide in this little hovel of a town in the Smoky Mountains. For crying out loud, he’ll spend hours in our front yard throwing the football to the other end, running to it, picking it up, and throwing it back. Paul plays catch, all by his lonesome. Now that’s resourceful! We have the same conversation every day. He may format it a bit differently, using varying approaches (as if he might get an original answer). It goes like this: “I need to know what to do with my life.” (No pressure there, trying to answer that one.) “I prayed to God about where I can live, for me, where is best for me.” (Don’t worry, Paul, God can handle it. Turning to God, I whisper, God, it’s all on you.) “I don’t know what to talk about.” (That’s okay, Paul. No one does.) “I don’t want any stress, anymore, anytime, in my life.” (Maybe you just need a nap, Paul.) Because it gets heavy, this cross that we help Paul carry, we choose to see the humor. We look to the lighter things. Here are some. We drove out to the beach for spring break, Paul at twenty-four, Katie at sixteen, Beth at thirteen, and me at forty-nine. At about ten a.m. we stopped at a gas station and mini mart. I told the kids to use the bathroom and purchase a snack. The gas tank was full, our bladders empty, and snacks would make the next few hours speed along. Paul was about to lower himself into the car with a tallboy, a twenty-fourounce can of beer. He clutched it in icy relief, his face fresh with the promise of the next few satisfying minutes of alcohol. I stopped, hands on hips, looking him square as a T-bone, rhetorical, “Are you kidding me?” Paul lifted one hand, as he does, gesticulating as if he were a man on vacation. “Don’t worry, Mom. It’s just a beer.” “First of all, Paul, we don’t drink at ten in the morning. Second, we don’t drink in the car. You will not open that, and when we get to the condo you can put it in the fridge, and after dinner, you can have your beer.” Sometimes the sheer ludicrousness of the situation and the ability to laugh about it is what gets us through. Then there was my birthday, the big five-o. Paul spontaneously surprised me with a question. His expressiveness was the best birthday gift. “So Mom, do you feel any different since it is your birthday, like, uh, now that you’re fifty, do you feel fifty?” I was thrilled that Paul took the initiative on this one, stepping out of his comfortable self-centered zone. I was careful about my answer. “Well, I’ve been feeling different over the past few years, gradually. It doesn’t happen in one day. The birthday only marks it.” I then asked, “Do I look fifty?” “Well, yes.”

In the array of sensory processing, I would be remiss if I left out Paul’s eating habits. Breaking bread with one another is as much a social as it is a basic need, along with shelter and clothing. I suppose that sitting down together, enjoying a meal, is a basic need as well. Autism is evidence of that because Paul eats most meals alone. He’ll sit down in the dining room, away from everyone, and at varied times. If I have dinner ready at six, he may be just getting to his exercise. He’ll work out, shower, and when everyone else is on to television or reading, he’s then ready to eat. Every expression correlates to filling a sensory need. Paul misses out on the usual feelings. Colloquial conversation, listening to music, taking in a sunset, the easy banter of comfortable relationships; these

are things we take for granted that are somewhat lost on Paul. These finer elements of communication, inherently nuanced with body language and verbal and nonverbal communication, layering a complex system that we are so used to that we are unaware of them. Sometimes I think that Paul’s reception is heightened and acute, beyond us, on that of a genius level. Maybe if stimuli weren’t so stimulating, he could absorb it more easily. Being overwhelmed causes a shutting down of sorts, which then creates a void. Paul has a constant need to fill these voids with obsessive compulsive behavior. A large part of his OCD centers around food and meals. It’s a 24/7 diner consisting of three square meals, second breakfasts, elevenses, and let’s just throw in afternoon tea, shall we? Paul can eat. One time when Rob took us all out for a juicy steak dinner, Paul ordered the most expensive entrée on the menu (which wasn’t unusual). The waiter asked, “How would you like that cooked?” Paul deftly answered, “Large.” At breakfast, he eats like an Olympic swimmer. Two packs of cheese grits, five sausage links, glutenfree waffles with syrup, and three cups of coffee. For a while he would pour two large mugs and chug both, one right after the other, while walking around the great room, sweat beading his forehead. It took a few months to get him to slow down a bit with that. My daughter Danika came home from college for winter break and cleaned out the pantry. She counted seven bottles of half-finished pancake syrup. After Paul’s evening workout, he patiently stands by the microwave and pops three bags of popcorn to keep him company while he watches a slapstick comedy video. We can hear him laughing from the basement, in his room. Paul buys groceries with his own debit card. He has obsessions: impulse buys, I call them. Half of what he buys is edible; the other half is household products. He equates buying stuff with being independent. We let it go as far as is reasonable. He has a penchant for cleaning agents. He buys all-purpose cleaner for his bathroom, one squirt bottle per week, pump soap for his hands, dish soap for the kitchen sink, even though I have a full bottle already there. Also in the cart is sixty-four ounces of laundry detergent, and he uses a lot of it. Shampoo and conditioner, let’s discuss that, why don’t we? His hair is short, so why conditioner? To squeeze the bottle with both hands and douse the shower with it, I guess. I have had to tell him “whoa” on the conditioner, after almost falling in the shower and slipping on the goo. Rob and I both must pick our battles. If I remind Paul not to use too much water on washing out his popcorn bowl from the night before, I’ll have to let the next opportunity go, like him washing his hands three times within the next fifteen minutes. Otherwise he gets upset with me or himself, which results in tics, smacks, pacing, and clicking noises. I have to say to myself, Is this a hill worth dying on today? Paul buys a toy for his dog Shep, almost every trip. The thing is that the toys are cheaply stitched together into mutant animal figures with noise squeakers and fiberfill. We have a constant litter of white puff balls all over the front yard because this is what Shep thinks he’s supposed to do with these toys— tear them apart. Paul also buys chips and cheese sauce and gluten-free cake and cookie mixes. When he makes a cake, he spreads a whole can of frosting on one layer. Sounds good, doesn’t it? But then there is the priceless sign he includes on the cake, “GLUTEN FREE YELLOW CAKE FOR PAUL,” written in black marker on copy paper. We chuckle and all is forgotten. The cookies have been a learning experience. I’ve had to remind him more than once to divide the dough into small balls, not heap the whole thing onto the middle of a cookie sheet. He’s done that plenty of times, and I just let it go. Again, so much of why he does things the way he does is for the sensory experience of them. This is as true now as it was when he was little.

Living in the woods, we deal with our share of critters. Spiders in the corners, the occasional snake that slithers in from the devil knows where. Once Paul came up the stairs from the basement. He entered the room announcing, “An unexpected snake came into the bathroom,” as if his goal was to elicit the same reaction we might have to news of a clogged toilet. (Let’s see how they’ll react to that!) He said it so matter-of-factly, as if not to cause alarm. “A snake?” I gasped. That’s exactly what Paul was trying to avoid. Rob went in there with a shovel and chopped the head off of a poisonous copperhead, nicking the ceramic tile in the process. Now every time I tiptoe to the bathroom at midnight … I … turn … on … the … hall … light … first. Another of Paul’s idiosyncrasies is trying out obscure words in conversation. Katie came home from college for a short break and we were concerned about a tire that she’d had patched for the eight-hour ride home. Paul was worried too. His being so concerned is a development in his empathy sphere. We find it new and endearing. He asked Katie about the tire. “Katie, did you just, were you just not able to get a new tire? Did you just only about break down on the side of the road with a flat tire?” He says this waving his arms and a furrowed brow. Katie soothingly answered, “It was a pain, Paul, but I got it sorta fixed enough to come home.” Paul sincerely wanted to show Katie a little sympathy. Commiserating with her, he said, “Confound it,” which he learned from the Disney movie The Sword in the Stone. Another time I met him coming up the basement stairs and told him that the washing machine was fixed and he spontaneously said, “Fabulous!” What would we do without his humor? As a writer, I understand that one word, the right word, makes all the difference in a written piece. I also understand the power of the right word in spoken conversation.

Paul is a man of few words, and when he speaks, people listen. In resounding approval, when Paul likes something, he’ll casually say, “Swell.” A sense of humor. Isn’t that what makes life swell?

35

STRESS

“I can’t tell if it’s killing me or making me stronger.” —found on Pinterest “Head underwater, and they tell me to breathe easy for a while …” —Sara Bareilles, “Love Song” I hear that mothers of autistic children have a high rate of heart disease and experience stress equal to that of soldiers on the battlefield. Stress on the level of post-traumatic stress disorder. I’ve staked that foxhole many times, taking aim against the Marauder. I suffer from migraines, occasionally, and have experienced adrenal stress. I went through menopause, hard and fast, within a year at age thirty-eight. I had my hormone levels checked, and it was a wonder I was walking around. I was flatline on estrogen, progesterone, and testosterone. Hot flashes every twenty minutes disturbed my sleep. Migraines, depression, anxiety, and saggy skin were the symptoms of my condition for a couple of years. Finally, my doctor prescribed a plant-based hormone compound to bring me back alive. Thankfully, it has helped me immensely. My mom says my grandmother went through early menopause. I wonder how she did it without any medical or nutritional help. But back then, in the ’50s, our society wasn’t so complicated with women wearing all these hats, playing all these roles—we weren’t expected to do everything and be everything. Mostly, there was no autism cluttering up motherhood back then. Disagree if you will, but I don’t remember anyone who was autistic when I was in school during the ’70s and early ’80s. It is appropriate for this chapter to talk about praying the Rosary. It saved my life. I can’t tell you how many times, because there is no precise way to measure the supernatural. What I can tell you is how in the natural space of time, those beads have become my lifeline to heaven. They have become my chain-link fence walling off the barrage of attacks from the outside world. They have often been my weapon against the wickedness and snares of the evil one: the Marauder. In this book, I’ve tried to do very little preaching or instructing. I don’t have a glossary of autistic terms, or links to direct readers to resources for all that our adult autistic children need. Employment, independent living, myriad therapies: all these things so necessary to their well-being are subjects already aptly covered in other books. As far as places to go and things to do, I myself have gleaned those from other advocates, colleagues whom I hold in high regard. I’d like to think that those who would read a book about the autism experience don’t lack awareness. We are very aware. Trust me. What I am offering here in Paul’s narrative are memories. Many of these are infused with prayer. My goto is the Rosary. St. Bernadette of Lourdes, France, once said, “I am not here to convince, only instruct.” When I explain the Rosary, I know that some will be resistant. A wall will go up, because they have been indoctrinated to think that the Rosary is a kind of hocus-pocus. It’s been relegated to a list of weird voodoo practices. I wanted to cry when I saw that it was lumped among other methods of superstition like tarot cards and Ouija boards. Nothing could be further from the truth. In fact, the Rosary is the Truth from which all others borrow inspiration, though those others are counterfeit. Where do I start? Let’s back up to some history on where we get the Rosary. St. Dominic is the man. He was born in 1170 and grew into a zealous man of God. There was a dangerous heresy developing in France. What heresy isn’t dangerous? When Dominic was born, his mother, Blessed Juana de Aza, dreamed she saw a dog leaping from her womb with a flaming torch in its mouth. The dog went all throughout the world setting the world on fire with the torch. Eventually her son would end up founding a religious order that would be called the Order of Preachers (the Dominicans). Their mission; Setting the world on fire with a love for Jesus through zealous preaching on the sacred mysteries of Christianity. In time, the Order would even be referred to as the Domini canes, that is, the “dogs of God.” Fulfilling his mother’s prophetic dream, Dominic’s dogs of God traverse the highways and byways of the world, “sniffing” out heresy and eradicating it from the hearts and minds of the wayward.10 In response to heresy, Dominic set out to spread the Gospel and convert hearts. Well-meaning and ardent though his preaching was, it lacked spiritual power. In 1208, Dominic retreated into the silence of the Prouille forest near the town of Toulouse, France, to

pray, begging heaven to come to his aid and give him what he needed to overcome the Albigensians. After three days of intense prayer, fasting, and penitential acts, the Queen of Heaven came to his assistance. According to ancient accounts, on the third day, a ball of fire and three holy angels appeared in the sky, after which the Virgin Mary spoke to St. Dominic. She informed him that although his preaching so far had been noble, it was the Ave Maria that would give his preaching power. “Wonder not that until now you (St. Dominic) have obtained so little fruit by your labors; you have spent them on a barren soil, not yet watered with the dew of divine grace. When God willed to renew the face of the earth, he began by sending down on it the fertilizing rain of the Angelic Salutation. Therefore, preach my Psalter.” Saint Dominic was not the founder of the monastic Marian Psalter; but he was chosen to be the founder and the father of a new way of praying the Marian Psalter, an evangelical way infused with meditation on the sacred mysteries. Before St. Dominic, the Marian Psalter had only been prayed as a way of honoring Mary. Through St. Dominic, the Marian Psalter took on an apostolic and meditative dimension. The Church has always stated that when Mary exhorted St. Dominic to preach her Psalter, she also revealed to him specific mysteries that were to be associated with it. These mysteries would serve for all future generations as a meditative battering ram against theological error.11 I found out that my birthday, August 8th, is also St. Dominic’s feast day. No wonder I’m a bit of a zealot. My husband says I’ll stand on people’s throats with the Truth. I have a special affinity with Our Blessed Mother, Mary. My devotion to the Rosary is this: I worship Christ through these twenty mysteries, which are the Joyful, the Sorrowful, the Glorious, and the Luminous, by holding Mary’s hand. Hail Mary, Full of Grace, the Lord is with you. Blessed are you among women, and Blessed is the fruit of thy womb, Jesus. Holy Mary, Mother of God, pray for us sinners now and at the hour of our death, Amen. The first half of this prayer is taken from Scripture in Luke 1:28, when the angel Gabriel saluted Mary: “Hail, full of grace, the Lord is with thee: blessed art thou among women” to tell her God has chosen her to bear the Messiah. Soon after that, Mary went to the hill country to stay with her cousin, Elizabeth, for three months. Elizabeth greeted Mary, “Blessed art thou among women, and blessed is the fruit of thy womb.” As we know from Luke 1:42, Elizabeth was also pregnant with John the Baptist, who leapt in the womb upon hearing Mary’s greeting to his mother. The Rosary is like singing a lullaby to a child at the end of the day. It calms the mother’s soul as much as it settles the baby down to sleep. I believe that the Rosary is based in truth, so therefore it is sacramental rather than superstitious. Moreover, I believe it because the Catholic Church tells me it is truth, just as I believe the Bible is the sacred word of God because the Catholic Church tells me it is so. When Paul was exhibiting bizarre personal behavior about twenty years ago, I picked up the Rosary, willing to try anything. I sat on our sofa during naptime and looked out the picture window toward the sky, the trees, the birds. I read a leaflet showing me the mysteries of Christ’s life. I read that the word “mystery” is another word for truth. Using imagery and visualization, along with meditating upon Scripture, I cast my cares upon God through praying the Rosary. It is not a quick fix, but rather a practice. Solutions are often subtle and rarely dramatic. Some are obvious answers to petitions, yet many are quiet, hidden. The changes aren’t seen with the naked eye, but sensed with the heart. It is my road of salvation, for me and for my family. The Sorrowful Mysteries hold especially deep meaning for me. I dwelt with Jesus in His agony in the garden. I felt the gravity of sin in His suffering. I realized that He had a choice to either let the cup pass, or drink from it fully. I imagined Him sweating great drops of blood. I could sense a fraction, a decimal point, of His stress. With each Hail Mary, I submitted to the Way of Sorrows and quit railing against God. I tired of shaking my fist at Him and saying, Why me, God? Why Paul? I moved on to the second Sorrowful Mystery, which is the Scourging at the Pillar, where Jesus was flogged by a whip tethered with balled barbs that tore at His flesh. All the while, His mother watched. “All of our diseases. All of our sins. By His stripes we are healed.” Hmmm. Dis-ease. Isn’t that what sin is? Disease? Who am I to complain? The Crowning with Thorns comes next. When I’ve pruned roses, those suckers hurt! I learned later that Adam’s curse of working among thorns circled around to Jesus. Wow! The Lord said in Genesis, “You’ll work by the sweat of your brow, and till the dirt, and it is cursed and it will yield thorns and thistles.” Jesus took our curse upon Himself. He redeemed us. And when he was blindfolded during the spitting and the plucking of his beard, it was because those who mocked Him couldn’t bear the love that shone from His eyes, through the blood, sweat, and tears. The more they hurled at Him, the more He provoked them to do it. God saw all of it. He knew Paul’s grief. He knew mine. He knew Rob’s. He was with us in silence. He saw the suffering of Paul’s sensory-groping darkness. He knew my loneliness. He walked among the muck and mire of Rob’s toil with our house and our business. How everything was always breaking. Leaks needed tar and pitch, bills needed paying, and food needed providing. The fourth mystery, the Carrying of the Cross, yielded quite a perspective for me. “Oh daughters of Jerusalem, why do you weep for me? Weep for yourselves and your children.” It was the women who trudged uphill alongside Jesus to Golgotha, the place of the skull. It was His mother who was there from

His conception, and endured to the foot of her son’s cross. That is me with my son Paul. I am there. I will continue. I also think of the seemingly random man, Simon, the Cyrenian, pulled from the jeering crowd to hurry the martyrdom. The Romans were killers and they were good at it. The longer it took, the more their consciences needled them. Simon, from Cyrene, was reluctant. But then there was a change within him as he heaved the Lord’s cross. “If anyone calls himself a disciple, let him (her) take up his cross and follow me.” I am Paul’s Simon. Paul drags the heavier cross. I am only a helper. Paul leads me to deeper conversion. Of course, the fifth mystery, the Crucifixion, completes it. The way I see it is that Jesus stands in the middle of thieves. We’re all thieves. I can decide to be a good thief or a bad one. “It is finished,” our Lord said as he breathed His last. The lance that pierced His side yielded blood and water, showering us in mercy. It was also from blood and water that He was born of His mother. She is the new Eve, acting in humility and obedience to God. Through her, childbirth is sanctified. Mary’s heart was pierced as well. She shares her son’s DNA. When we receive Him in Holy Communion, we receive her too. He would redeem her too. Full of grace. That’s what she was, what she is. There is no room for anything else in her being, except God, except His will. Her life was never her own. I realize my destiny. My life doesn’t belong to me. Strangely, that brings great peace. I’m not saying I am totally okay with all the hassle, all the suffering. I still pitch my fits here and there. But it is an epiphany that continues to reveal the Plan. All this, while holding my Most Sorrowful Mother’s hand.

As far as stress is concerned, it takes its toll, but I try to take care of myself. I’m in this thing for the long haul. I am called to be an advocate, a legal guardian, and a parent to Paul, till death do us part. I try to eat right (most of the time). I don’t smoke. I have a drink only on special occasions. I try to get enough rest, except for 3 a.m. epiphanies. I have a few truly good friends. I love music and wow my kids with lyrics from songs that span the decades. Rob says I appreciate music. I’m goofy and laugh at my own jokes. I say what other people only think. I like to redo thrift store furniture. I’m into chalk paint and antiquing things. I have a thing for refurbishing old jewelry boxes. (No heavy lifting involved.) I like writing letters. Swimming is an old standby. It changed my life when I was a teenager and I keep paddling to lube the joints. We have a sign that points to our bedroom that reads LIFEGUARD: ON DUTY. I like the smell of patchouli. I’m one of those weirdos who like to clean house. I love good food and that first cup of coffee in the morning. I try to keep up with Paul with running. I’m more of a jogger though. When he signs himself up for a 10K or a half-marathon, I register for the 5K. It keeps my heart ticking and the dopamine flowing. My goal is to be first in my age-group. I don’t run with an iPod. Wrapped around a palm and clutched within the center is the crucifix. I count the Hail Marys on my fingers. When I’m finished with the mysteries of the day, I continue with a chant that helps with the kick at the end of the run: “Jesus, Mary, I love you! Save Souls!” If I were ever adopted by a Seminole or a Cherokee tribe (Seminoles for Florida, and Cherokee for North Carolina), my name would be “Runs with Rosary.” That’s how I manage stress. I know … God’s got this. 10 From Father Donald H. Calloway. Champions of the Rosary (Stockbridge, MA: Marian Press, 2016). 11 From Father Donald H. Calloway. Champions of the Rosary (Stockbridge, MA: Marian Press, 2016).

36

HOLIDAY TOUR

“Fruitcake? You think it’d be good. It doesn’t add up. Fruit—good, cake—great. Fruitcake? Nasty crap … Have you tried fruitcake? I don’t even think that’s fruit in there. (Picking his teeth), What is that, a Skittle? What is this, a treasure map? What is the recipe of fruitcake, anything but fruit? It was like the baker was just clearing off the counter: ‘Put all this stuff in there. Nobody eats this, they just mail it to relatives.’” —Jim Gaffigan Holidays can be tough. There’s so much expectation, so much pressure to be all and do all. Sibling squabbles are the stones we stumble upon when autism and adulthood are the knotty knolls on the terrain. In a way, home is a safe zone; the place where we can be ourselves, show our moods, and be real. But in another way, when we’re too familiar (familiar is derived from the word “family”), things can get tense. We play hard. We fight hard.

At Thanksgiving, we did the usual gobble: ate and played charades and trivia games. Before dinner, everyone doing their own thing, Scott decided that target practice with a .40 caliber pistol over the back deck was a good idea. Scott is well trained in handgun use. It still made a lot of noise. Shep doesn’t like thunder or gunshots. Scott had taken off Shep’s shock collar that keeps him within our Invisible Fence when he’d taken him for a walk earlier, and had forgotten to put it back on. When Shep heard the pistol, he ran away with no collar to zap him. We called and called and walked around looking for him. I had just seen placards all over the county of a picture of another Australian shepherd: LOST DOG— REWARD: $200.00. Purebreds are sometimes stolen. God, please help us find Shep. And a further petition, Shep is lost and can’t be found, Saint Anthony, please come around. Panicked, I thought, “Thanksgiving is ruined if we lose Shep.” Paul set out walking. Rob decided to take the Jeep out to find Paul and Shep. When he got to the end of our dirt road, which is only three-tenths of a mile long, there they were. Paul was bent down on his haunches, calling and coaxing Shep, who was running down a craggy, rutted clay path toward his faithful master. Paul scooped Shep up behind the forelegs and in front of his rear legs, right in the middle, and stood up! He had a hold, wasn’t about to let him go, and started off carrying his forty-five-pound dog home, a great big grin on his face. I wonder if all his hikes, mountain biking, and running gave Paul a sense of where his little doggy had gone? All those years of navigating cross-country runs; had sometimes being the leader of the pack sharpened his sense of orientation, his internal compass? Also, being in tune with Shep, his habits, and his response to nature? Was it Paul’s guardian angel who lit the way? Rob was grinning from the driver’s seat. Thankfully, the gloomy cloud of missing dog was lifted. “Oh Shep! Yay! You’re back!” “Good dog!” “Oh Paul, thank goodness! You’re the man!” Whew. We could get on with Thanksgiving.

We’d taken the annual family photo. As we sat down to turkey, I read a children’s picture book, Thank You, Sarah: The Woman Who Saved Thanksgiving, by Laurie Halse Anderson and Matt Faulkner. We’d made place mats out of paper bags with margined lines, with the heading “I’m Thankful For.” Paul distributed crayons at each place setting. Surprisingly, everyone seemed taken with this sentimental sharing. Paul’s response was, “I’m thankful for finding Shep. For God. For family.” Scott’s place mat also had, “For finding Shep.” We should write a children’s book: Shep: The Dog That Saved Thanksgiving. We drank coffee, played guitar, and exercised in the basement, with the music really loud. Overall, it was a great time. But then came the time for the younger sons and their girlfriends to leave and return to their homes, hours away. Some of us were sitting in the living room when Paul bounded up the stairs with fire in his eyes, arms folded rigid over his chest, and his legs scissored at an angled stance. It was obvious that he was

asserting his position as well as defending himself from any reciprocal lashing return. “Did—some—anyone”—he jerked his hands in the air—“feel like they could just take my toothpaste? That I should share it and that’s wrong if I don’t want to share it?” Each word was strident. Notice the broken speech in his rage. He was accusing one brother in particular, because the other had already left a few hours earlier. He was the only one who could be the culprit. I find this impressive because I’d seen lately that Paul was trying to learn nuances and speak indirectly. He was learning discretion and the finer rules of conversation. But of course, he was at the “rough draft” stage of this game. A little rudimentary. Come to think of it, my other son was too. He was not used to seeing his brother take such detailed notice. I calmed Paul down, saying, “It’s okay. When we have guests, sometimes they forget stuff like soap, a razor, or toothpaste. We also give our guests a towel to use. We can be gracious and let them use our toothpaste. It was on the counter, right? Try not to get upset about it. We can buy more toothpaste.” He huffed a bit, then walked out of the room, stimming his way back downstairs, clapping and clicking. My other son looked at me and said, “I guess I won’t brush my teeth ever again when I’m here.” Heavens. I looked at him, like it was no different than watching them fight over a soda when they were little kids. I was fairly depleted after Turkey Day with all the fixings. I sat on the couch in a lifeguard hoodie and warm socks, hugging a cup of hot tea for my edgy throat. I said to the younger, “You know, you could humble yourself and apologize. I do it all the time. It’s how we keep the peace. Paul is learning, you know. It’s not about the toothpaste. It’s never about the toothpaste. Think about road rage. Is it really about the other driver not using his blinker? There’s a bigger picture, here. Put yourself in his place. Here you and your brother come home for the holidays, with your own cars, your own girlfriends, and your own lives. You stay for a few days, have a good time, then you go back home to your own independent careers and schedules. Paul is still here at home, with his parents. He doesn’t drive and he’s about to have another birthday. How do you think that makes him feel?” We settled down a bit. It was quite a reality check for all of us. With autism, it always is. I sensed a gravity here, a grounding. My son’s girlfriend sat with us, witnessing our gritty reality. I actually felt proud. Hey, you can’t say that we’re a perfect family, or that we even come close. A human family? Yes. We’re that. A normal, chaotic family, with just enough dysfunction to keep it real. Sibling rivalry, like everything else, is exaggerated. The sights, sounds, smells, tastes, and touches are sometimes as acute as a searchlight blaring in your face, a stench that makes you plug your nose, a swallow of a chili pepper that you chase with milk, and hot as a lit gas stove. Holidays tend to reveal the quiet crises that bubble below the surface all year. We never see it coming, either. Somehow all the high expectations, the excitement, the anxiety, the looking forward to seeing everyone creates a perfect storm. A tornado hits without warning, and we wonder what happened. Then we mope around picking up the shards, the debris, the charred remains. But that’s what family is about. That’s the human part of holidays. The spiritual lessons are what we keep when we return home from our “over the river and through the woods” tour. Here’s my take on the drama: It’s not whether we squish the tube or roll it neatly from the bottom. It’s not whether we put the cap back on nice and neat or let it stray and glue itself to the inside corner of the drawer. It’s not even about if it goes missing. It’s not about the toothpaste. It’s never about the toothpaste.

37

SWITCHBACKS ON A COUNTRY ROAD

“With a holy host of others, standin’ round me, Still I’m on the dark side of the moon; And it seems like it goes on like this forever, You must forgive me, If I’m up and gone to Carolina in my mind.” —James Taylor, “Carolina in My Mind” There’s a deciduous aroma to the place: a combination of pine, split wood, and fern. After living here for eighteen years, I can say that the place has grown on us, like moss by the mailbox. For all the twists and turns these roads render, I think, at least in some ways, that we’ve grown on it too. Paul is very much at home here. I think the place is as much a part of him as he is a part of it. He walks it, bikes it, basks beneath the sun of it, and prays within the sanctuary of it. Though it isn’t citified, there are always sounds. If we hear a siren, we make the sign of the cross and read about the incident in the paper the following week. Birds have the monopoly on airtime, because there is no traffic, no blaring horns. In symphonic harmony, we’ve learned to distinguish the robin from the cardinal, the towhee who says “Drink your tea” from the goldfinch’s sweet trill. The coo of a mourning dove awakens us to a quiet laud, a repose. The fog is a wraithlike presence, lacing the mountains, that only a few enjoy with a cup of coffee in pajamas. Paul shuffles upstairs, dips three fingers in our holy water font, makes the sign of the cross, and pours a full mug of coffee. “Good morning, Paul,” I say. “Good morning, Mom,” he returns, ruffling his hair, blinking his eyes. Later, the mist burns off with the sun and the rest of the creatures chime in on the day. Across the river, roosters crow, cows moo, and hogs snort. In the summer, tractors mow. Shep, our Australian shepherd, barks here at the homestead, keeping bear, deer, bobcat, pesky squirrels, rabbits, and let us not forget, wild hogs, at bay. For about a year, we didn’t have a dog, and wildlife became a little more familiar, up close and personal. When we’d return from a trip out of town, we’d notice our petunias were nibbled to the quick. Once we were awoken by a huge black bear, larger than we’d ever seen. It’s one thing to see an animal in captivity, in a zoo. It’s another to watch it rummaging through our trash at midnight. Like the papa bear from Goldilocks, he lumbered around the back, then sniffed our swing set, batting it with a paw, then scurried away, like he was the size of a squirrel up a tree, in half a second. The next day, Paul and I rode over to a breeder in Cleveland, Georgia, and he picked out a gingersnap of a puppy—more like a teddy bear than a dog—and named him Shep. One look in those amber eyes, and you feel like your soul has been seen. Paul paid for him with his own money, papers and everything. The Hiawassee River, when the Tennessee Valley Authority opens up the dam to generate energy, is about as noisy as it gets around here. I can hear it now as I sit on the back deck. Rob has built a small dock where he goes for silence and casts a mayfly lure on the water, occasionally catching rainbow and spotted brown trout. When we first moved here, we heard that where we are is the best fishing spot in the county. For years, when Rob could find the time, he would descend the hill and try, but he didn’t have much luck. It’s like the fish could smell his stress; they’d steer clear of the hook. Now, even though Rob’s burden isn’t any lighter, he has more time. When he’s not strumming the guitar, and the river is right, he’ll don his waders and take up his rod. Now, more often than not, the trout sense his ease with the pole, the lure, the cove where he’s both embedded and cultivated. Rob has learned what works, what is native. We don’t try to change our surroundings, but adapt to them. A canopy of trees aligns both sides of the river, a frame within the larger circular cope of blue sky and mountain line. I picture Rob decompressing there, intermittently praying a decade of the Rosary while waiting on a bite. When he caught a large, beautiful spotted trout with yellow underneath, it like a reward to his prayers; he said as much. “I had no bucket to put him in and bring him up for dinner. I gently removed the hook, held him with both hands, and said aloud, ‘I did catch you,’ and let him go.” This after a long day of work and a good portion of managing Paul—as his supervisor, but also as his dad. It’s not easy. He’s caught between being a benevolent boss and getting some much-needed work out of Paul. After Paul went off his antidepressant, we saw an increase in his OCD symptoms. We can suggest things to him, but it’s difficult to gauge when it’s the right moment. It’s hard to tell if it’s Paul’s personality, his maleness, or the autism that makes him prone to such a mercurial disposition. Probably a combination of all three, each lending varying amounts to the specific mood. Sometimes causing trouble with accepting

constructive criticism, the OCD often makes it impossible to help Paul reach rational conclusions. I took the risk of setting him off as he poured a cup of coffee one afternoon. “I wouldn’t do that if I were you. You are just now calming down, Paul. This morning you were so edgy. Caffeine now isn’t going to help.” Holding a full mug over the sink, Paul said, “Uh … ohhhh … so you think I should not be having coffee right now? It will make me super in a bad mood? Ohhhh Mom. I guess you’re right.” He calmly dumped the old coffee down the drain. As I said, I was taking a chance that he would think I was bossing him or not respecting his manhood or independence by suggesting that he curb the coffee. I then said, “What about a juice? I’m about to make some. Would you like that?” “Sure.” As simple as that. A small grace, but grace nonetheless. We clinked our glasses and drank down smoothies of beets, carrots, celery, green apples, and lemons. A little grimacing, but no caffeine sugar crash. Paul then ran seven miles outside. Sometimes it works.

Sometimes Paul will accept direction, but sometimes he’ll react. Rob is patient and forbearing. He’ll say, “Even though we need card packs for the card game, and we need 2000, I really just want Paul to have happy work. If he feels the need to count the one pack of cards three times before he moves on to the next, it’s okay; as long as he’s in a good mood.” This means that Rob and I and sometimes one of our college kids will be at the office, helping assemble card packs by the dozens and the hundreds.

In October 2016, my friend Maggie and I met at the dam to walk and talk. As the sun faded into dusk, fires from nearby hilltops raged. Maggie and I watched the woods burn. What was going on? Why? We’d heard that wildfires were being set on purpose. A couple of Saturdays later, I was trying not to stress out. Nobody was out on the road. I had to go to the grocery store. There was a thick, choking haze. The Smoky Mountains are usually true to their name, wispy, the clouds an ethereal mist. We live in a Tolkien retreat. In contrast, this was end-times eerie. The sun was a fiery red ball in the sky, filtered by a smoke lens, an opaque dingy curtain. It looked apocalyptic, sinister. Our throats itched and our eyes watered. It hadn’t rained in three months. We had severe drought conditions that were perfect for wildfires, caused by lightning strikes and arsonists. Over nine thousand acres burned in western North Carolina through the Nantahala National Forest, and some folks had to evacuate their homes. Over five hundred firefighters from all over the United States came and camped out to douse the flames. Church marquees read PRAY FOR RAIN. Everyone wanted to help. Residents brought food, drinks, toiletries, and anything that the firemen could use to sustain themselves as they worked and slept, on and off at twelve-hour working shifts. At one point, the firefighters said, “No more.” They actually had to refuse donations from well-meaning citizens. As a group, the firemen said they’d never seen such a generous community. Thankfully, not a single home or life was lost. On the autism front, though, we did experience a symbolic smoke inhalation. The stress from the drought and the fires caused Paul to wring his hands constantly. Fear and Paul’s OCD compelled him to do the opposite of what was needed, that being to conserve water. In the effort to be perfect, meticulous, OCD’s overcompensation sabotages whatever the goal is, through overdoing. It seemed that the more I harped, the more Paul rebelled, and the more water he used. There was more hand smacking, more stimming, more tic noises, more pacing. The faucet seemed louder, the showers longer, the washing machine loads heavier and more frequent. Paul just couldn’t get a single spoon and dish clean enough. I commanded, “Paul, please turn off the water. We don’t know how much is in the well.” “Oh, okay. You’re right. So you think it’s not good for me to use too much water?” (He yelled the word water.) Then the smacked hands, clenched jaw, the broad gestures—sure indicators that he was annoyed and anxious. Somewhat scathed, we survived. We never ran out of water and the fires were contained. And finally, it rained.

Living here in the mountains is a stress reliever. The aesthetics are a way of helping us cope. Our hobbies, whether fishing, playing guitar, listening to music and singing, or running, take us down a notch on the Richter scale. You can hear the water rushing over the rocks that leach minerals into it. There’s no better drinking water in the world than from our well. During a thunderstorm, the mountains echo like bass drums. Reverberations of the thunder bounce back and forth in the valleys, as if rock walls played paddleball with this thing called electricity. Dogs bark in the daytime, off in the distance, and coyotes howl at night. Even in the winter, when we have snow, there is sound. It’s a palpable white hush, louder than your thoughts. School is closed. Everyone stays home. Many park their cars at the bottoms of hills and walk up to their cabins. Rob has ruined a transaxle on our Durango in pulling neighbors out of ditches when their cars have slid off icepacked roads. During spring and summer, violets layer over grays, charcoals, and a rainbow of green; spruce, laurel,

rhododendron, lichen, and ivy. There is a wistful beauty, even on gray days, the leaden clouds set against the greenness mixes a purple mountain majesty described in song. The dogwoods’ white blooms float in the air, as if not attached to branches. Forsythia, jonquil, and sunflower yellow burst in a cheer of country charm that sits you down on the porch of this place. There’s even a blush of blossom on the reserved rhododendron. Mimosa trees blossom in warm pink powder-puff flowers. It reminds me of Florida. If only we could bottle it as a perfume. The fall is its own painted picture. Every acre, every corner, every pasture, every crooked creek denotes its own beautiful pixels. A series of three bends on Piney Road lead out to wavy lands and mountains rolling in color. The bends make me want to stay and not head home or go to work. I can’t decide if the flash of red maple, gold poplar, or orange oak is my favorite. It’s like my kids. Each is different, each is beautiful, and each is my favorite. Together, they blend into a wedding of burgundy, golden honey, sun, and burnt umber as unto a canopy over a chapel in the woods.

Paul spends most of his time outside. He shoots baskets while the sun glares down. Twilight is different, though. Paul runs so hard all day that he’s tired in the evenings. Now, instead of coffee, he blends a fruit smoothie as a pre-workout boost for whatever he chooses: running, a martial arts video, punching his heavy punching bag, or a strenuous bike ride. We’re proud of him for concluding this on his own. He dresses for the temperature and revels in all the seasons. Mostly he prefers the summer. He doesn’t complain much, but once in a while he’ll say, “Dumb, stupid winter.” It doesn’t seem to deter him, though. He layers on the sweaters, hat, and gloves, and heads out. Pondering the word “memoir,” French for “the study of memory,” I find that nothing is disconnected or cut off from the source, although each scene has its own defined setting, colors, feels, tastes, and denouements. I’m fine with that, because my brain doesn’t work in a linear or box-like way. It’s more like bodies of water that run into each other. A stream flows into a creek, then a river, which broadens into a lake; on the other side, another river leads narrow into a creek, then a sluice, and I realize that it’s all the same water. Take the Hiawassee River, for example. It starts in the Unicoi Mountains in North Georgia and flows down, winding alongside roads and opening into Chatuge Lake, which pools over the state line into North Carolina, then narrows as a river again. Our property line marks halfway across the river. There is something moving about that thought, water cycling through its various forms, ever changing and not something humanly contained, not in a sensory way, but spiritual; like going “down in the river to pray, studyin’ about that good ol’ way”; it’s baptismal, cleansing. We don’t own it, but it’s ours to use and pour out to others. The river travels right by our backyard hill, waving “Hey there,” like neighbors we pass, lifting an index finger from the steering wheel on these narrow roads. You can’t not acknowledge others in this county when passing. It would be like showing up at a party, as the first guest, and not greeting the hostess. The relationships we have are all affected by the geography and the culture that it forms. People touch us and we touch them. I see these scenarios as a mountain road. The neighbors we pass are very much a part of Paul’s story. Most of life isn’t a straight-up steep climb, but instead a series of switchbacks, winding back and forth to highs, lows, and plateaus to make it to the top. That’s how it’s happened here with Paul and the rest of the Andersons. It mimics a cross-country running race: rocks and mud litter the trail at times. There are vertical inclines and drastic declines. Sometimes it’s shady, even frigid. Other times the sun blazes so hot you feel like you want to peel back your skin. Then, stop and drink and get back in the race. It winds and curves, then it levels out, and then you sprint to the finish.

Lifting a finger to say “Hi” in the car? This isn’t the vulgar bird sign. There is not much of that here. Fewer lights and less traffic mean less road rage. If you’d lay on the horn at everyone who doesn’t use their blinker, you’d have no friends, since you’d probably know the person who was driving. No, we lift a finger to wave hello and “Hey, I’m on my side of the bend, are you?” Following is a nod to neighbors we’ve driven past in this county.

It was our first January here, when life hibernates. Our rural area burrows dormant and the number one activity is cabin fever. Especially when the kids were about as tall as a locust post. It was sunny but cold, and we wanted to get out of the house. We knew movies were shown in Murphy, in the next west county, at the Henn Theatre. They had one movie. I had to ask Paul about this. I couldn’t remember the movie title. At twenty-seven years old, while washing his hands for the fifth time within fifteen minutes, he recalled the movie from so many years before. He said, shortly, “Dinosaurs.” I’d called the theater and a nice lady answered the phone. I asked when the matinee time was. It was ten minutes till three. She answered, “Three o’clock.” “Oh, we won’t make it.” “Where are you coming from?” she asked. “Hayesville. It’ll take us thirty minutes to get there.”

She said calmly, “We’ll wait.” We hustled the kids into the van and drove to Murphy. When we got there, that nice lady smiled at us, sold us $2 tickets, then stepped over to the popcorn machine. We bought candy, popcorn, and soda. When we walked into the theater, the lights were still on, and a few people sat, munching on popcorn and waiting. The lights dimmed, and the animated characters lit up the screen. Never before, and I believe never again, will we see that happen. It’s our “Move to Hayesville” story. We refer to it in two words, like a quip from a movie: “We’ll wait.” When Paul and I discussed this recently, he walked over and faced me. He added, “We found out that there was one movie theater in Murphy, North Carolina. Then we found out about Blairsville Cinemas Six in Blairsville, Georgiaaaaa. And then, the movies at Hiawassee, Georgiaaaa.” He waved his arms up on the last “Georgia.” I asked him, “Do you remember what year that one was built?” He seemed frustrated. “I don’t know,” he said, waving his arms again. Knowing I was stretching his conversational limits, I said, “I think it may have been about the same time as when they built the McDonald’s. Do you remember the year it was built?” Right away he said, “2008?” pronouncing it halfway between a statement and a question. Paul then got on with his plans for the afternoon. I’d interrupted his list.

I’d like to bring my friend Leslie Woody back into the story. Her daughter Megan and my youngest daughter Bethany are fast friends to this day. Leslie is Bethany’s godmother. Paul has stayed with the Woodys many times when we’ve been out of town. Shep, Paul’s dog, has too. Denny, Leslie’s husband, had a good way with Paul, respecting his solitude. Denny understood, being a consummate mountain man. I can see it: Denny in his recliner next to the picture window, watching Paul outside. Paul folds his arms over his chest, his eyes following the two Aussie Shepherds, Rosie and Shep, as they herd one another. He smiles at some amusement in a daydream. He clicks his tongue, and it sounds like a snapping of fingers. He takes a hand, raising it up in the air, and swipes it down on the other, fist into palm, galloping over to the other corner of the yard, near the Mary statue. She stands as a matronly guard over the Woody household. It’s a juxtaposition, that statue looming over their switchbacked driveway. Catholics are a bit of an anomaly here in the hills, like Scarlett O’Hara’s mother in Gone with the Wind, those hooped antebellum skirts kneeling in the dark after dinner, praying the Rosary. Chad, one of Leslie and Denny’s strapping sons, practically grew up here at the house with our son Scott, and Scott equally at their house. Scott was Chad’s best man at his “weddn’,” and when Denny passed away from Lou Gehrig’s disease, Scott came racing home from Nashville, prompted by a call from Chad: “Get here when ya can.” Paul went to Denny’s funeral. He approached Mrs. Woody at the gathering afterwards and said to her, “I’m sorry that Mr. Woody died. I’m thinking that you would want a hug.” That hug meant so much. More than Paul knows.

Sometimes it’s hard to remember how and where you met a person. I think we ran into Alison Ashe at a basketball game where her brother played with our Scotty. I needed a babysitter for something; I can’t remember. I know that the kids were all young enough to need a supervisor, at least. She came over, probably expecting mayhem. She was prepared for challenges. After playing outside and dinner, the kids sat with Alison, either on the sofa or splayed out on the floor, watching SpongeBob SquarePants. The thought of bedtime overwhelmed her, so she made an announcement. “Okay guys, when the next commercial comes on, y’all need to go brush yer teeth.” So they sat, chuckling at the shenanigans of Spongebob, Patrick, Mr. Krabs, Squidward, and Plankton. Then came the commercial. Paul got up first, leading the pack; then Scott, Mark, Danika, Katie, and even Bethany got up and moved out of the room. Alison wondered where everyone was going and said, “Where are y’all goin’?” All the kids looked at her, and Scott said, “We’re going to brush our teeth.” Alison had expected a little resistance. I guess she assumed she’d have to plead a few more times with the kids. Their obedience made her forget what she’d asked in the first place.

We had a few coaches call the house, letting us know about team pictures and fund-raisers. One, Coach Mark, motivated our boys with a loud manner, but he always had a smile and a blast at the referee on the kids’ behalf. He called and got Paul. Paul has excellent telephone manners. “Hello, this is Paul.” Coach Mark told him that he needed to talk to “Scott or Rob, one of ’em.” He was glad Paul told him who he was. Coach Mark said, “Usually, I jest start namin’ names, and which one are you?” Another neighbor we wave to is a guy named Joe Barnes. It is rare that he was referred to by just his first name. I’ve picked up on this subtle southern custom, calling a person by both names. Joe Barnes had a way of saying what other people only think and getting away with it. He and another guy named Bud came over one time to help us get the keys out of our locked car. He was friendly and safe, like a big

brother. In fact, Joe grew up the only boy with two sisters. Joe Barnes called things like he saw ’em. He joked with Paul and made small talk. “You been runnin’, Paul?” He tossed the football with him in the front yard. One day, Paul wanted to hang out with Joe Barnes, so he rode his bike to watch him at football practice. It takes a solid seven minutes to drive to the football field. To ride a bike, you risk being chased by dogs, and drivers, blinded by curves. There is no bike path or sidewalk, so safety is completely in your own hands. Well, Paul got a flat tire. He limped in on a squashed wheel and sat on the sidelines. Joe, a tall and husky blond, in his pads and grit, wiped his brow and wondered how to help. He was impressed by Paul’s gesture. When the coach hoisted Paul’s bike in his truck, Joe felt bad. I think he thought the best way to applaud Paul was to shame his football buddies, so he bellowed in front of Paul, “Paul Anderson is a much better friend than you mukes.” In writing this book, I asked Joe what word he actually used, and he said he couldn’t remember. I asked him, “Do you mind if I use the word ‘mukes’?12 My husband uses that word a lot, and I like it. It fits.” Joe Barnes humphed, “Yeah, I’ve heard that word from Danika.” “Well yeah,” I replied, “the apple doesn’t fall too far from the tree.” I talked to Katie about this memory, as we cooled down after a sweaty run, and she laughed. “I bet I know what word he used.” Joe Barnes couldn’t very well repeat this word to me, Paul’s mother, Mrs. Anderson. So we’ll leave it at that.

Living in the middle of the woods has expanded our world in a way that surfing the virtual cyber web can’t. The glitz and glamour isn’t as shiny as a summer raindrop on a river rock half buried in the petunia bed. Bling and baubles don’t hold a candle to the silvery silk of a spider’s web spun from the rosebush to the porch rail. They don’t come close. In fleshing out Paul’s Prayers, an epiphany of morning dew has dawned on me. I realize that the book I’ve written is as much about Paul living here in the Hayesville hamlet as it is about Paul himself. I remember talking to Rob Tiger at his store on the square a few years back about this place. He said with a tinge of sadness, “What is missing in most kids’ lives today is a sense of place.” An old saying from St. Francis de Sales, Bishop of Geneva, comes to mind: “Bloom where you are planted.” I think that if you hang around a certain spot long enough, you realize how deep your roots have crawled. When feeling pensive, I look out at the mountains. Come to think of it, when feeling any emotion, including boredom and indifference, the mountains are where I find my center; my God. In the late afternoon, when the sun is setting on the west front side of our house, the light casts an ochre glow over the eastern side of our view. It’s especially golden when looming clouds in the far part of the horizon contrast with the sun-washed gloam. There’s a translucency to it. A chiaroscuro view. A light against dark. That’s when we see beauty. The front side is the going forward. The back side is the memories and experience. 12 Pronounced like “mooks.” The Random House Dictionary of the English Language defines this like so: Mucker (mu r), n. Brit. Slang. A vulgar, ill-bred person.

38

AMEN

“Accept whatever befalls you, in crushing misfortune be patient; For in fire gold is tested, and worthy men in the crucible of humiliation.” —Sirach 2:4–5 This book might never have been published had Paul not given me permission to share it. It was a Sunday. We were on our way home from Mass. Over the weekend, I had been mulling over the contract for Paul’s Prayers. Also, I needed a total of 63,000 words. At that point I was about 25,000 words short. Rob chortled, “No worries there.” Ha, ha. He knows me well. I panicked. What if Paul doesn’t like it? Broaching the subject, I said, “Paul, you know I’ve written a book about you and me, right? It’s called Paul’s Prayers, and it’s going to be published.” “Why?” His eyes sharp, and his hands waved back and forth, like an umpire yelling, “You’re out!” “I don’t want you writing about me, okay? So stop it.” Incensed, he added, “Who do you want to know about me? Somebody in San Diego? Or somebody in Arizona, huh, huh?” Oh boy. My heart leapt hard. Rob was driving. No words, but I read his eyes like a book. Calm down. Give it time. Don’t respond. Let him think on it. Crunchy gravel on the dirt road was the only sound. Like the loud ticking of a clock when talking pauses. We walked into the house. Retreating to the laundry room. I threw some clothes in the dryer. It’s a little space. Enough for one person, maybe two. To think and pray. There’s something about laundry. Washing and folding neutralizes the odor of crisis. It’s not like the dining room, where we share what’s safe and conducive to good digestion. There’s less pressure in the laundry room. I don’t know, maybe it’s the dirty socks. There’s a safety in talking about the nitty gritty. The remnants of a day of hard work all get washed away. The clothes in the hamper are a daily journal, a short memoir; a record about to get deleted. It’s a place to start anew. Often, two will gather. Jesus in our midst. The kids and the husband know where to find me. All the while, I’m folding. They can speak freely. One of my favorite Degas paintings is of a woman ironing. That must be it. Laundry is humble, hallowed. Paul had gone downstairs for a minute. He bounded back up and stepped into the laundry room. His arms folded over his chest, he looked me square in my mother face. “Why do you want to write about me?” “Well, Paul, other books have been written about autistic children and adults by their parents. They’re called memoirs. They help people. Other people having the same struggles. One was written called All I Can Handle: I’m No Mother Teresa: A Life Raising Three Daughters with Autism.” “Whoa.” His eyes widened. “More than one? Three is harder than one.” I’m always astounded at his spontaneity. He listened. I continued. “The difference is with our book is that it tells about your deep faith in God. You are such an example for so many people. You’re so talented, handsome, smart, and funny. You are an inspiration.” He brightened. I continued, “Our story can help people. I promise, I haven’t written anything bad about you. I’ve written about how you’ve overcome difficulties with courage.” Paul is hard on himself. Have I said that before? Rob thinks that maybe at first Paul thought I’d list all his shortcomings. When I used the word “talented,” his whole demeanor changed. Lifting his hands, he said, “Go ahead. It’s okay. You can write.” “It will help others.” Paul ponders. Paul prays. “Then tell them.” Amen.