The Ride Together: A Brother and Sister's Memoir of Autism in the Family - Hardcover

Chapter One: Family

We looked like a cup of human fruit cocktail dumped onto the top of the house, each piece different but all out of the same can: Mom, David in his pajamas, Michael and his wife, Paul and his wife, various children, and me. Everyone present and accounted for, as Pop would have said -- and come to think of it, he was probably up there too, like the ghost in Hamlet, the late King Monroe wandering the castle parapet.

We were together there for one last time, up on the roof, as though sitting on top of the old house would make it easier for the family to remember everything that had happened there. After thirty-eight years we were leaving; the place was sold and Mom was moving on to something smaller.

Each of us had climbed a rickety ladder in the attic; the ladder rose straight to hook onto a metal bar under the trapdoor. One by one, we'd emerged through the trapdoor onto the widow's walk, a square platform surrounded by a wooden guardrail, right in the center and at the very top of the roof, up high, above three tall stories.

This was the first time our oldest brother, David, had ever been on the roof. Although we had lived in the house for nearly forty years, over all this time nobody had thought to take him up, creating one of those gaps in ordinary experience that are scattered throughout the life of a person with autism.

We gazed toward the other houses on Lenox Street, visible through wind-shifting leaves, like ocean boulders appearing and disappearing with the waves. It was a late afternoon in April of 1995, in spring, that pale, open, sweet time of year when new and unexpected things seem about to occur. This did not make me happy.

I was forty-one years old and unlike Michael and Paul, I was single. I was terrified of what the future would hold. The house was where it had all happened. The house was where we had gathered, where we had been children, where we had grown up, where grandparents and other relatives and friends had come to live, some of them for years, with our strange, proud, ordinary family, in the country inside our house. This was the place we had returned to and left again, reminding ourselves of who we were. The house had kept our faith, but now it couldn't protect me. If it were gone, what would remind Michael and Paul of who we were, how we lived our lives?

I saw myself holding my brother David's hand, leading him through his days, big emptiness all around me.

We had a couple of bottles of good champagne. While Paul's two teenage stepdaughters, Gia and Cleo, watched, I showed first Henry, Michael's three-year-old son, then Nora, Paul's five-year-old daughter, how you gently ease the cork out of a champagne bottle, and the great noise it makes, and how the cork flies, shot out of the thick cannon of the bottle's neck.

"I used to come up here and see whales," I told Henry. "Sometimes I would come up and instead of trees and streets, there would be an ocean filled with fish and whales." And our big rock on Lenox Street became a schooner and we could sail away, we could voyage forever in the beautiful day, into the starry night.

I was drunk on champagne and all I wanted to do was make trouble. "Mom," I said, innocent-like, "you know, I used to come up here and go out onto the roof. Just walked out on the roof. Not like you and Pop -- you used a rope. I just walked out."

For many years, until Joan and Monroe were both well into their sixties, my parents had cleaned the gutters of the house together. My mother tied a rope around my father's waist, looping it several times around the posts of the widow's walk, belaying Pop as he inched out down the roof, which sloped at a steep pitch in all four directions, scooped out the crud from the gutters, and carefully threw the debris down onto the lawn.

"Well," my mother commented, "what we did probably wasn't all that safe, either, when you get right down to it."

"It was nuts, Mom," Michael commented cheerfully. "You should have hired people, like all the neighbors do. People younger, stronger, and stupider. The whole idea was nuts."

"I didn't use a rope," I said, twisting the conversation back to me. "Just went over the rail and down the side of that dormer. I sat on my rear end and scooted all the way to the front of the dormer. There's a little sloping piece of the roof in front of the dormer."

Nobody said anything. My sisters-in-law were looking at their children. None of them could believe I would put an idea like this in the minds of these children.

There's no talking to people when they get like that, no explaining.

I remembered it so clearly: the neighborhood laid out like a diagram in front of me, with a clarity and definition that it lacked at all other times, and, securely stowed right below me, every single one of the people I knew the best.

I don't think there was a moment in my life when I'd felt safer.

Then someone made a joke, and Paul changed the subject, and all of a sudden the champagne was finished and we all went downstairs, perhaps a little more carefully than we had gone up, for a last supper of leftovers.

Brothers, wives, children, Mom, and me, everybody pulled food out of the refrigerator. David pulled out a plate of smoked turkey and took it out to the table. Michael had smoked it perfectly, which took hours of tending to do.

We all went out to the porch and sat around the folding table that our mother had modified thirty-four years before, a tidy Joan-like design that used only two small blocks of wood and two hooks and eyes to make it the right height to eat at, sitting on the hickory and oak chairs that came from Mr. Dietz's shop in New Paris, Pennsylvania. Our father had always explained the design of the chairs to every new guest: the oak slat backs had been bent in such a way that they fit the small of your back comfortably no matter what size you were. After the explanation he would smile and get back to work, spinning ice in the martini glasses to chill them, then, with the final spin, shooting the ice over the porch railing into the bushes. We all believed that someday ice trees would grow from those cubes. Even that belief we were leaving behind.

David said grace and then we all started eating.

A few minutes into the meal, Michael noticed that David had an immense amount of smoked turkey on his plate and was eating and eating, slice after slice of the turkey. David eats fast and he can gulp his food. He can consume full plates in minutes, as though he absolutely needs to eat all of it, as though he intends to eat a lot and leave nothing behind. Michael got up quickly and went into the kitchen. I knew what he was thinking. He was thinking, Is this the last of my smoked turkey?

And from inside the house, soon, Michael cried, "Stop him."

We all knew what Michael meant.

Michael flew out of the house and grabbed the plate from in front of David, just as David reached for another piece. I was next to David. Michael's elbow grazed my face. When Michael gave the plate back to Dave, there were only a few pieces left.

Michael added the turkey to the great feast the rest of us drew from.

There was already plenty of food for everyone.

We all ate. David ate, but he was nervous. I was sitting next to him and I could see his nervousness. I could see him shake.

His plate fell away from him. It fell onto the porch floor and broke.

Some people pretended nothing had happened. Some people stopped and looked.

Someone said, "Oh, no!"

David ran into the house.

I bent down and picked up the pieces of plate. I picked up the slices of turkey. I pinched the small shards of china and placed them like needles on the slices of plate.

"Nobody with bare feet over here," I said. "Keep the children away."

Then David reappeared, with a broom and a dustpan.

"Let me help," I said to him. I knelt and held the dustpan as he swept up the shards.

"Good, Dave," I said. "Let me take that out."

Michael's wife, Ellen, brought David another plate.

I went into the kitchen and threw out bits and pieces of plate. Michael stood at the sink. Maybe he was collecting his thoughts.

"I'm not going to make a big deal out of this," I said, almost spitting out the words, "but I have to tell you that what you just did with David was completely out of line."

"Well," he shrugged, "I didn't want him to have all the turkey."

"It was completely out of line," I said.

He shrugged again. "Yeah," he said, "yeah, it was."

I decided to take a walk. I needed to calm myself.

Down Lenox Street, down the street where we had all grown up, in the days before Michael and Paul had wives and children and other allegiances.

I thought the walk would calm me, but I started to cry and couldn't stop. Now I saw the rest of my life. If this was Michael's capacity for cruelty, I could not let him take care of our brother. And Paul lived on an island, I thought, as though that said it all.

I made a lot of that broken plate. Electric current was zinging through me as I turned back toward the house and headed up the slope of the driveway.

All I needed was my bag and I could leave. I could go downtown to my apartment and leave them all. I walked through the kitchen, past Michael and Paul leaning against the counters, as silent as though they were hooked up to the sink and the refrigerator. I was still crying.

The bag was in the study; I jammed it on my shoulder to head out.

Paul and Michael were still in the kitchen, but suddenly it seemed everyone else had gone.

"I'm leaving, you guys," I said. "I don't want to spend another minute with you. Either one of you."

"Judy, what's bothering you?" asked Michael. I must admit he showed some courage. Michael knew what was coming. He and Paul knew what was coming, more than I did. Because it was their worst nightmare, one they'd spent a lot of off-duty brain time trying not to imagine. Paul had been in town since Thursday; this was Sunday. We were supposed to have a family meeting, one I had been asking for since Pop had died three years earlier. I knew they were both going to go home with their families. We would have no meeting. And they had the protection of families and I did not.

"What's bothering me? Forget it, Michael," I said, hoisting my bag over my shoulder.

"Do you want to talk about it, Judy?" asked Paul.

"No," I said, "No. I don't want to talk about it. And I really don't want to talk about it with either of you two. I will only get blamed and dismissed for being emotional. Emotional? There are some things you should be emotional about. And I won't be blamed for that."

"Let's talk," said Michael. "For heaven's sake, Judy, give us a chance."

"You?" I replied. "You? I don't think so."

I headed past the washer and dryer and out the back door and down the back steps and onto the driveway.

Paul and Michael followed.

"This isn't just about you," said Paul. "You want to make it that way. You want to be a martyr? We have feelings, too. You think we don't have feelings. Come on, Judy," he said, "let's talk."

I stopped. "You want to talk?" I screamed into the beautiful calm twilight of our last day as a family in Chevy Chase, Maryland, tears pouring down my face. I looked at them both. "Okay," I spluttered, "let's talk." I took a breath. "Okay," I said, "for starters, What do you two plan to do about your brother when your mother dies?"

That is where the conversation began.

In the photographs of that afternoon David sits, dressed in his pajamas, snuggled against a corner of the widow's walk railing, happily hugging his knees and smiling for the picture. He looks good. He is wearing black dress shoes with his pajamas.

Michael mentioned something else about David later. He told me that, at the time, for several months during David's periodic visits home he had noticed that David's compulsive behaviors had been more and more out of control; Michael believed that it was his role to watch out for David, pay attention to those behaviors, and keep them to a minimum. Maybe David's behaviors had to do with Pop's death, Michael had thought, with the changes in the family, with the move out of the old house.

When Michael said this to me, my reaction was that David wasn't the problem and keeping his so-called compulsive behaviors controlled wasn't the point.

But as it turned out, in some ways Michael and I were both right.

Copyright © 2003 by Judy Karasik and Paul Karasik