Sister on the Edge of Autism Blog, Psychology Today

“A journey of love and discovery,” The Oregonian, 2/09

“A sister looks to the future,” Autism Advocate, 12/09

By Eileen Garvin

I learned to swim the way many children in large families do: My older brothers pushed me into the water. It was the spring of 1973, a season in which heavy Pacific Northwest snowmelt had left Lake Coeur d’Alene higher than usual, hungry waves drowning the beach and lapping at the seawall. At age three, I stood in the weak spring sunlight next to my big sister Margaret, my light blue lifejacket riding up to my ears, looking out at that wide-open expanse of icy blue-black water. Margaret would turn out to be the natural swimmer, the one who melted into the water and stayed all day, leaping and diving like a fish.

Not me. One second I was standing in the yard, the next minute I was flailing around in the water, gasping, frozen and certain I was going to die. Margaret just sat there, hands tucked into her life jacket, watching me with her clear hazel eyes, aloof in her autism and away somewhere else in her mind. Of course I didn’t die. My brothers pulled me out, laughing, and did this kind of thing again and again for the next 20 years or so.

There was no transition for me from swimming to not swimming, no easy movement from one place to the next. There was just the shock of sudden change, the sense of breathlessness, and then the panicked attempt to deal with the situation as best I could. Having grown up with Margaret’s autism, this was all pretty familiar ground.

Life with Margaret was always unpredictable. One minute she would be sitting next to me in the church pew and the next she’d be running down the aisle. She could go from clothed to quite suddenly naked, from quiet and relaxed to screaming and inconsolable.

Throughout my childhood and young adulthood, this was just the way things were. I always wanted things to be better with Margaret—for her, for me, for our family. I wanted us to be able to anticipate what might be coming and, with this foresight, capture, perhaps, a bit more collective grace instead of continually facing the unexpected with the same sense of helplessness.

I’ve been thinking a lot about transitions lately—stepping stones from one place to another, a path from here to there, a plan. Over the years, I’ve experienced what transition can be like—gradual, thoughtful movement between points, from one job to another, different living situations, new relationships. I’ve seen myself transition in learning new sports, new skills, in knowing myself better. And these conscious shifts have made change easier and brought more peace to my life.

I think of Margaret, and I wonder how we might transition more easily to different stages in our relationship as we age. When I think about the fact that one day my parents will no longer be here to make decisions for my sister, I recognize the urgency of trying to build better bridges between us.

The Role of Siblings
My mother, Patricia Garvin, will tell you that the day Margaret moved out of our house was one of the worst in her life. She recently wrote to me, “Leaving Margaret with staff at the apartment was the most difficult thing I have ever done in my life, even though we had been preparing, working toward and planning for this for years.”

I know how hard that day was for my mother, but I doubt if she recognized how terrible it was for me. From as early as I could remember, I was my sister’s keeper. With my parents, I shouldered the constant worry, the ever-present sense that we needed to keep on top of things, and the certainty that whatever we did would never be enough. My three other  siblings felt this way, too. We couldn’t help it; Margaret was the sun in our family universe.

I’d always felt responsible for her, and the day we left her at her first apartment, I felt like a criminal. There was my big sister standing up to her knees in the complex swimming pool, hands clasping opposite wrists, weeping. As we drove off, Margaret began to wail aloud—a deep and devastating sorrow that expressed all she could never say in words. My mother and I drove away, sobbing ourselves.That was 1991, and was, by all accounts, a successful change. After a few bumps, Margaret never insisted on coming home and she eventually moved into a wonderful house where she now lives with three housemates and a supportive staff. But the memory of that day underscores Margaret’s long-term impact on my life.

Don Meyer, director of the Sibling Support Project (www.siblingsupport.org), noted that siblings’ issues often go unnoticed, although the role they play is significant. As children and young adults, siblings help carry the load along with their parents.“Just about anything you could say about being a parent of a child with special needs you can pretty much put ditto marks under siblings,” Meyer said. The only real difference is that siblings’ responsibilities last longer. “Brothers and sisters will likely have the longest lasting relationships with siblings with special needs,” he said. “This is a relationship in excess of 65 years.”

Family Planning, Sibling Choices
In many families, sibling concerns are not at the forefront of parents’ minds. Some parents feel driven to plan for the future so their other children will not be burdened, and fail to acknowledge how involved they already are.

“Parents never get over seeing their children as children,” said Dr. Sandra Harris, professor emerita at Rutgers University. “They want to protect them. They don’t want to burden them.”

They don’t talk about the future because it is a painful topic. Most parents are undoubtably trying to do what they think is best for their other, typically developing kids. But those good intentions can backfire, leaving adult siblings completely unprepared for the complex responsibility of caring for their brother or sister after their parents die. Abruptly forced to navigate the confusing system of social services for their siblings’ housing, health and finances for the first time, they feel lost.

“They are like parents of newly diagnosed kids,” said Meyer, adding that there is a severe lack of support for siblings of adults with disabilities suddenly thrust into the guardian role.

“There are not very many lifelines being thrown their way.” Both

Harris and Meyer advocate for open communication within families and planning that involves everyone, including the child with a disability.

“I’m forever begging parents, to the best of their abilities, to make plans for their child with a disability and to share those plans with their typically developing kids,” Meyer said.

The best course of action is to plan early, plan together and let typically developing siblings weigh in and make their own choices. Some of us might opt for legal guardianship. Others may choose to play a lesser role. Some parents might expect their kids to let their brother or sister move in at some point. Others, like mine, might never want them to have to take that on. And siblings will have their own ideas about what they are willing to do. Whatever we decide, it’s better we go in with our eyes open. Harris said that some children, sensing their parents’ discomfort about the issue, volunteer without thinking things through and end up with an obligation they aren’t prepared to carry out. She said siblings need to ask themselves, “Am I my brother or my sister’s keeper?” and,. “What are my responsibilities, and how am I going to carry them out?”

Eileen Hackett is one sibling whose family was always able to communicate about her brother Bob’s future. Hackett, 52, knows that when her parents pass away, she and her brother Jim, 45, will take on guardianship for Bob, 49, who has autism. “My parents are very good planners. They are very realistic, and so am I,” she said. Hackett’s parents never pressured her regarding her Bob’s future. “I volunteered,” she said. “It was never forced on me by my parents, which is wonderful. We don’t have a hard time talking about most things.”

My parents have also planned well for my sister, and as a family we are making strides in communicating more clearly. But in earlier years, we didn’t. We never talked about how Margaret’s autism made everything so hard on us as a family. I never told them how angry and embarrassed I was, ashamed for being so, and sad and guilty. I didn’t convey the heavy obligation I always felt, a weight they could have lightened if only we had talked about it.

When I became a young adult, I felt a looming sense of dread that Margaret would eventually move in with me. Could I get married? How could I have kids? Where would she work? Would it make me a bad person if I refused? For many years I felt like running away. In the midst of my worry, I failed to realize that my sister was living quite well in her own home with her staff members and housemates—they were another family for her. It’s been almost 20 years, and I am still accepting the truth of all of this.

Even now it helps to have a reminder from someone like Dr. Meyer, who encourages parents to be flexible about what their typically developing children might be willing to do. “Siblings need to get the message that there are many ways to stay lovingly involved, and that doesn’t mean living under the same roof,” he said.

Looking to the Future
Recognizing that I don’t have to be everything for Margaret has allowed me to choose to be someone for her. Recently I’ve been trying to just be her sister. It is not always easy, but we do our best, and it is sometimes sweet. We hike, go out for lunch, walk my dog, ride bikes. Recently, she surprised me by agreeing to go to the movies twice and floored me by going with me to listen to live music.

It took me a while to realize that Margaret was making an effort to be with me just as I was for her. My infrequent visits challenge her sense of order and sameness. Her need for routine and her communication barriers are hard for me. This awareness doesn’t make autism go away. Sometimes I feel terrible when I am with her because she can’t understand what I am feeling, nor I her, and we are left staring at each other across the gap. Other times, I look at her and see in her face the child she was before I recognized that she was different, when she was just my companion, my life-jacketed twin. I feel the wordless and deep connection that I know is there, that keeps me believing that it’s worth it.

Just because I’ve chosen to stay involved in Margaret’s life doesn’t mean it will ever be easy, as Hackett reminded me. That’s just the way things are for people like us. “As I got older, I realized that nobody has a perfect life,” she said. “You think you have the only hell on earth. You grow up and realize that there is a lot of pain in the world.”

And up ahead for siblings are more unknowns: health problems, financial concerns, housing issues. The needs of our brothers and sisters will change as they age, as will our ability to support them. Currently, support systems for adult siblings are scarce. This, I hope, will change, considering how many of us there are and given the questions we will most certainly have as we and our siblings age. I don’t know what to think about all of that other than to hope I can take an example from Hackett. “I’ll take it as it comes,” she said.

We all do our best to evolve and change. More than 30 years after my first icy plunge into Lake Coeur d’Alene, I took swimming lessons. No longer breathless and fearful, I now slide into the water with ease and feel like I belong there. I’ve transitioned from being a non-swimmer to a swimmer. It took some time, discomfort and plenty of practice, but I got there. As for my big sister, over the years she took her natural love of water and turned it into gold medals at Washington State Special Olympics.

This fall, when Margaret came to visit me in Hood River, Oregon, we went to the community pool together. As on any given weekday morning, it was warm and humid inside. Children shrieked and laughed, and their voices echoed off the walls. A water aerobics instructor struggled to be heard above the din. As we left the locker room, I watched my big sister, marching with purpose toward the pool with her towel tucked under her arm, and smiled to think we’d found this common interest after all these years.

When I reached the pool, I sat down, slid into the water and pulled my goggles down over my eyes. I looked over at Margaret, sitting on the edge of the pool, palms together and pointing, looking at me expectantly. I knew what she was waiting for. “One, two three, go!” I said. And she did.

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