Table of Contents
Praise
Title Page
Dedication
Chapter 1. - family-style dining
Chapter 2. - lunch date
Chapter 3. - let her eat cake
Chapter 4. - winging it
Chapter 5. - what autism is
Chapter 6. - the sheep is between the table and the hamburger
Chapter 7. - friends and neighbors
Chapter 8. - the know-nothing aunt
Chapter 9. - what’s next, margaret?
Chapter 10. - life is a bowl of spaghetti
Chapter 11. - how to be a sister
resources
Acknowledgements
about the author
Copyright Page
PRAISE FOR
how to be a sister
“A MARVELOUS, HARROWING, life-affirming book. In looking to forge a meaningful relationship with her severely autistic sister, Eileen Garvin finds a simpler way of being in, and extending, every moment. Isn’t that what we’re all after? I loved this book. And boy, can she write!”
—ABIGAIL THOMAS, AUTHOR OF A Three Dog Life: A Memoir
“AUTISTICKIDSGROW up to be autistic adults. They have brothers and sisters who grow up alongside them. This book is an unforgettable, courageous, and explicit sibling’s eye view into a rarely explored relationship, where the bond wrought by love and joy, crisis and heartbreak is mesmerizing.”
—MARY-ANN TIRONE SMITH, AUTHOR OF Girls of Tender Age: A Memoir
“ALTHOUGH EILEEN GARVIN was the younger sister, she was expected to be responsible for Margaret. Now, as an adult, Eileen struggles to understand her unpredictable and effusive sister, and finds that no matter how much confusion and inner conflict she feels, she always returns to love. A poignant, thoughtful, and honest portrayal of life with a sibling who has autism.”
—RACHEL SIMON, AUTHOR OF Riding the Bus with My Sister and Building a Home with My Husband
“HOW TO BE A SISTER, told with amazing insight and compassion, is rich in the hilarious detail of coping with a beloved family member with special needs. Read this book. It will enrich your life.”
—TERRELL HARRIS DOUGAN, AUTHOR OF That Went Well: Adventures in Caring for My Sister
“EILEEN GARVIN’S PORTRAITS of her sister Margaret in chaotic action bring a rich identity into focus, an identity that includes autism—but also a wild and playful tug-of-war with the world that more truly defines Margaret. Bravo to Eileen for seeing and for enabling the rest of us to witness her sister’s creativity, purpose, and profoundly independent path.”
—JUDY KARASIK, COAUTHOR OF The Ride Together: A Brother and Sister’s Memoir of Autism in the Family
“EILEEN GARVIN HAS written a deeply reflective, generous book about her relationship with her older sister, Margaret, who has autism. A compelling description of how Garvin’s childhood experiences continued to influence her interactions with her sister many years later, it gracefully intertwines humor, pain, respect, and optimism. Eileen Garvin is open about her struggles, her love, her anger, her guilt, her fear, and her respect for her sister—as a child and as a woman. Every parent who is raising both a child with autism and a neurotypical child should read this book. So should every older teen or adult sibling of a person with autism. And so should all the rest of us who want to gain a greater empathy for the life of a family which includes a child with autism.”
—SANDRA L. HARRIS, PHD, EXECUTIVE DIRECTOR, DOUGLASS DEVELOPMENTAL DISABILITIES CENTER, RUTGERS UNIVERSITY, AND COAUTHOR OF Siblings of Children with Autism: A Guide for Families
For Brendan
1.
family-style dining
Children should be taught to speak quietly, and to use their best manners so that this experience is as pleasurable for other restaurant patrons as it is for your family.
—On Dining Out, EMILY POST’S ETIQUETTE
THROUGHOUT THE COURSE of my life, I’ve only been certain of two things: I am the youngest of five children, and I am my sister Margaret’s older sister. Even though she was born three years earlier than I, I was the caretaker, the dependable one, and, as far as I can see, always will be. Instead of growing up in the protective shadow of my big sister, I often found myself dodging things she was throwing at me or chasing that shadow through a crowd of people as my big sister took off on some crazy escapade.
Margaret and I did not choose this role reversal. You could say that her autism assigned it to us. For as long as I can remember, I was often in charge of Margaret, who could never be left alone, and so it fell to me to be the responsible party during the frequent social calamities caused by her trespasses during our childhood: her mirthful and public nudity that I struggled to cover; her loud and clear laughter during moments of silence that I tried to hush; or, worse yet, the times that her anxiety and fear turned to uncontrollable screaming that I was powerless to quell.
The passage of time didn’t seem to help, and I felt that sense of powerlessness return to me in our adult years. I felt its icy grip one particular June morning as I sat behind the wheel of my mother’s car out in front of my sister’s house in Spokane, Washington. My mother had lent me the car so that I could take Margaret out to lunch. Lunch. A lunch date. My sister and I are going out to lunch. I’m in town visiting, and we are going to grab some lunch. Catch up. In the vocabulary of regular people, this sounded so reasonable, so normal. But where I came from, this was unknown territory that could sooner resemble a riot than two women in their thirties enjoying a midday meal together.
I sat in the car, clutching the wheel, trying to gather my thoughts. I simply didn’t know what to expect. I’d been in town for several days and was just now getting over to see Margaret. Even though I had come home expressly to meet with her, I had no idea how this get-together would go and if it would
