I’ve had the idea for some time that I should write a few posts about family relationships. The last of seven children, I have both sisters and brothers, and those family dynamics are something I know fully. I’ve been mulling over a “Sisters” post. And a “Brothers” post. Even a “Godfather” and “Godmother” post. Maybe there’d be something folks could relate to.
But where to start? Mom and Dad have already had their own posts. (Sort of). I decided to take the easy route, and start with something I’d already written. This past spring, I stumbled across a website seeking stories from siblings of adults with developmental disabilities. So I wrote the following about my brother Stephen, who has autism. It wasn’t quite what the website was looking for, but the editorial board for annemcclane.com thought it was just fine. And a good way to end the inaugural (half) year of this blog.
I could write about my childhood experiences as a sibling of a person with a disability. How my older brother Stephen echoed my words when I was around four or five, and just learning how to speak myself. Or our teenage years, when Stephen saw me driving for the first time, and wouldn’t look at me or speak to me for days after. Or how I pushed the boundaries of my curfew, thinking my parents were too busy with their advocacy efforts and travel on Stephen’s behalf to notice or correct me. (I was proven wrong).
But in middle age, this feels like ancient history. Stephen will turn fifty next year. He lives in an apartment, and spends that time with his extended family of Farian and Yvette. He spends weekends with the family he was born into. Our parents are gone, so that family is now his six siblings and a multitude of nieces and nephews.
My brother Jerry is Stephen’s legal guardian. And if there’s anyone who fills the huge role Mom played in Stephen’s life, it’s my sister Susan. Stephen spends the bulk of his weekend time with Susan; this arrangement began some time ago, but particularly when Mom’s health started to fail.
Mom was a small woman, and gentle in every outward temperament, but with a fierce intellect and emotional core. In her last year, she suffered a significant physical and cognitive decline, and required 24-hour attendance. During any given weekend during that time, you could find Stephen at Mom’s house, and a rotation of family members in and out, looking after things.
Dad died fifteen years ago, but we lost Mom just one year ago, right before Christmas 2014. It’s a profound loss for all of us, but it’s difficult to tell just how Stephen is feeling it and coping.
Stephen doesn’t express himself in any way considered “normal.” Take his peculiar speech patterns. His words will sometimes come out in a staccato barrage, sometimes a stutter, and it can be incomprehensible to the uninitiated. When he wants something, or is grateful for something, he may refer to the object of his pleadings or gratitude as his “nice, good brother (fill-in-the-blanks with Jerry or David),” or “nice, good sister (Debby, Julie, Susan or Anne).”
For all I know, he might have picked up that turn of phrase from something Mom once said. It sounds like her. Her gentleness and warmth are the only things that did not dim as she was dying.
One Sunday afternoon that autumn, I was over at Mom’s house. I was seated at the dining room table, laptop in front of me. Mom was in her recliner, quiet, and Stephen was wandering around the house. He was trying to get everything set up for his weekly viewing of “Winnie the Pooh and the Blustery Day.” The remote control for the TV wasn’t working.
Stephen tapped Mom on the shoulder. “Ma, Ma, please fix the remote control.”
Gently, she took the remote control from Stephen, held it up to her ear, and said “Hello.”
I jumped up from the table, told Mom there wasn’t anyone on the phone, and grabbed the remote control.
“Stephen,” I said, “please don’t bother Mom with that. She’s not feeling well.”
“Oh, she’s not, Anne? Poor Mama.” And then, not two beats later, “Anne, please fix the remote control.”
“Okay,” I said. I took the remote control. It needed batteries, but I didn’t know where to find any at Mom’s house. Also, I needed to check with Susan to see if maybe the batteries were removed for a reason.
I shoved the remote control in a drawer of the china cabinet—out of sight, out of Stephen’s mind, I hoped—and told him I’d get to it later.
I don’t recall whether it was that particular Sunday, or another one in that same season. Susan had returned, and I was taking my leave, and told Stephen goodbye. He was fiddling with the DVD player, setting up Winnie the Pooh.
Standing at the entertainment center, he turned his head, and I would swear he thanked me for looking after Mom.
That was unusual. While Stephen professes his gratitude often, it’s usually for things like sharing your Chex Mix. Or fixing the remote control (shame on me).
I was nonplussed, and probably said something about how we were all looking after Mom together. And I still don’t know if it was Stephen’s intention, or maybe just what I wanted to hear. I could have interpreted Stephen’s words to meet my needs.
But Stephen’s ability to confound is part of what makes him who he is. He’s quick to express empathy, somewhat unusual for a person with autism. It’s not always appropriate empathy, but I’ve learned to take it when I can get it. So I choose to remember that exchange as Stephen’s heart-felt expression of gratitude to all his family. It’s sweet, and may be self-satisfying, but it’s a memory I find worth holding onto.
So there you go, Steve. You get singled out for the first “family relationship” post. Dad probably wouldn’t like that you got special treatment.