How to Be a Sister by Eileen Garvin (e manga reader txt) 📕

Here is my sister, I am saying to myself as I open my arms to embrace her. This is my sister Margaret. She has a disorder called autism.

I KEPT READING. I was still looking for the voices of other siblings, preferably older, more experienced ones. I wanted to hear from someone who had been through this before and had the answers to my questions: How did you deal with all this? I wanted to know, And what are you doing now? How do you relate to your sibling? Does she talk to you? Can you go and visit her? How do you try to build your own life knowing that hers will always be limited by her disability? What do you do with your guilt, your anger, your sorrow? What is your responsibility toward this person as an adult? What do you do when your parents die?

At the beginning of my inquiry, I’d read a parents’ guide written by medical experts and therapists. The book offered practical advice on diagnosis, treatment, and educational concerns, even legal advice. Obviously this book had not been written for me. Even so, I found myself getting pissed off when I read the four meager pages devoted to siblings’ concerns. Here we were, still an afterthought, and I felt not unlike my parents must have—alone and blazing the trail.

But then I began to notice a new trend in children’s books written for siblings of children with autism. At least this generation is getting that support, I thought. I joined a Listserv, which gave me hope, but after reading the posts for a while, I realized that most of the other users were teenagers. I became increasingly disturbed by the fact that they were all girls and seemed to be experts on autism. Knowing that boys are four times more likely to have autism, I wondered about how young girls get sucked into the caretaking mode so early in life. They wrote about how hard it was to cope with their siblings and the more standard, depressing realities of being a teenager, but they also spent much of their time offering one another advice on caregiving. They offered tips on how to change their sibling’s food or medication or routine. They suggested talking to their sibling’s pediatrician to help mitigate possible allergies. Many of them were consciously training for the day that their sibling would move in with them after their parents died. They were little adults already.

The way they wrote, you’d think they didn’t have a choice but to become the main support for their siblings after their parents died. Some didn’t. Some had no other family to depend on and no financial support. And they had never heard of any alternative. I hadn’t, either, until I’d started this particular search. In Siblings of Children with Autism, Drs. Sandra Harris and Beth Glasberg wrote that some siblings become full-time caregivers while others provide ancillary social support. Others cut ties altogether. “Whatever choice an adult sibling makes is a legitimate one,” they wrote.

But these Listserv girls were too young yet to make those choices. Some of them had harrowing stories about older, stronger siblings throwing them down the stairs, smashing their toys, tearing out hair, and breaking bones. And they were young, so young. Of course we know the autistic brothers and sisters can’t always control their behavior. Yet, I had to wonder how this kind of physical violence was shaping them and had shaped me. What do you do when someone beats you up and your parents say, “He can’t help it. Don’t be angry.”?

I thought about how my parents had the means and the foresight to provide Margaret with a place of her own. I was grateful for that, and, having witnessed Margaret’s success in her home life, I was disturbed by the writings of some of these passionate teenagers who said they would never, ever let their brother move into one of those awful group homes, where he’d be so lonely and scared. I thought of where Margaret lived, her cheerful, loud house, her girlish bedroom. I remembered the blank look on her face as she sat rocking on the couch at my parents’ house the year after she graduated from school and didn’t have anywhere to go. My mother struggled to keep her occupied, to fill her hours, and no one was happy. I thought of how joyful Margaret had been when she had a job she liked, and how she now has the power to make us leave her space when we come over to visit. “G’bye!” she yells cheerfully, slamming the front door on our heels. “Thanks for coming!” she calls out from behind the closed door.

I still think about one of the few older Listserv members who wrote to me. She was in her late twenties and hadn’t gone to college, because she felt like she had to take care of her younger brothers, both with autism. Her parents couldn’t handle them, she said. She described herself as depressed and having no friends. She had spent all her time taking care of her brothers, so she’d never cultivated any hobbies or friendships. She hadn’t had the time for a job, since she was looking after the boys, and so she had no work experience outside the home. While it seemed possible that she could have earned some kind of living from this situation, she said her parents kept the money that the government paid each month for each boy’s disability. And at the time of her last posting, her parents had started charging her rent.

This woman was totally paralyzed. What could I say to someone like her? “You need to have your own life if you want to be a healthy caregiver for your brothers,” I wrote. “And if you want to take care of them, that is a choice you have to make. You have all kinds