by Sharon Short
In the parking lot, I said, “I have to go to this meeting. You’ll just have to come in with me . . .”
“I don’t want to. Why didn’t you just leave me at your apartment?”
“I told you, I think you’ll be, um, safer if you’re not alone.”
“I’ll wait here.” She crossed her arms.
Right. Like I would leave her alone here at Stillwater, where my cousin Guy and other autistic adults lived. If she got out and wandered into the general meeting room where group activities took place, who knows what she might do? She could upset lots of people . . .
But she looked at me, her eyes wide. “Please, Josie, I’m just really tired. And I need a break from people. I’ll take a nap.”
“It’s starting to snow,” I said impatiently, gesturing at the windshield to the lazily drifting flurries outside. “You’ll be cold. Come on.”
“I have this thick coat,” she said, wrapping her mink more tightly around her. “And there’s a quilt in the backseat, I noticed.” Her eyes got even wider. I felt my heart soften.
“I bet you carry it for emergencies,” she said. It was true. My van was, thankfully, reliable, but before it I had a car that broke down often, so I got in the habit of keeping an old quilt in my vehicle. If my vehicle broke down while it was cold, I’d stay warm. If it was hot, I could sit outside on the grass while waiting for AAA without my thighs getting itchy. “You always were a smart girl, Josie. Very smart,” she said.
I know, I know. And yet, I felt myself falling for it. What kid—even a twenty-nine-year-old kid who was abandoned years ago by both parents—doesn’t love compliments?
She picked up a book from the stack at her feet—returns I meant to take to the bookmobile the next week when Winnie was back and making her appointed stops.
“Oh, look! An Anne George mystery! Ooh, I just love that series, too,” Mama gushed.
Did she? Or had she just read the author’s name off the most recent title I’d checked out—Murder Boogies with Elvis?
But then she said, “I just loved the one where Mouse and Sister went down to the condo in Destin, Florida, didn’t you?” That did it. My resistance was mostly down. Here was my fifty-something mama, looking like a little girl in her fur, having complimented my intelligence, gushing over one of the most beloved aspects of my life—books—practically begging to be tucked in with a quilt so she could read.
Then she said, in a hushed voice, “And I haven’t read this one yet.”
That did it. I trusted her to stay in the van, snug in her fur and quilt, reading.
“What do you suppose the meeting is going to be about?” asked Nellie Kaiser, who was sitting next to me at one of the tables in the cafeteria. We each had Styrofoam cups of coffee.
I didn’t really want any coffee, but I’d gotten some anyway, mostly just to have something warm to hold on to, something to do with my nervousness. Nellie, whose son was also one of the full-time residents, had already drunk her coffee, and was tearing off bits of the rim of the cup, and making a tidy pile of the Styrofoam shards.
Our nervousness had nothing to do with the caffeine in our cups. Meetings like this at Stillwater were rare. We knew the announcement had to be something important, but we didn’t know what.
Stillwater was so important to us and our loved ones. When people hear the phrase—a residential home for adults with autism—the reactions vary. How sad, many say. Can’t they be mainstreamed? others say, a little outraged, having read reports of the progress made with children with autism.
But the fact is, the adults at Stillwater have severe cases of autism. Many, like my cousin Guy, who is in his midforties, were children in an era that didn’t understand autism nearly as well as it is understood now—not that it is currently a fully understood condition. Living at home with one or two caretakers would be difficult for all concerned—sure, it was possible to do, but would the adults with autism really blossom as they did here?
The answer was no. Stillwater is a special place. It is anything but depressing—in fact, it’s one of the most uplifting places I know. The adults who live there are nurtured to be the best individuals they can be, not in spite of their autism, but simply because the leaders of Stillwater understand the residents in their care are, first and foremost, individuals. The autism is never ignored, but it’s not the sole focus of how Stillwater’s residents’ lives are organized.
It’s kind of like going with the current, instead of against it, in a journey down a river.
And that’s important, because autism doesn’t have just one face. In fact, in the United States alone, as many as one and a half million children and adults are thought to have autism. And autism is unique to each person because it’s a neurological disorder that presents as a developmental disability on a whole spectrum from mild, moderate to severe. So autism manifests itself as uniquely as fingerprints. Of course, just as all fingerprints have certain characteristics, so does autism—difficulties with speech, with interrelationships, with repetitive behaviors, with eye contact, with change, with motor skills. It’s a complex disease, but just like with fingerprints, the loops and whorls of autism are unique to each individual.
For example, my cousin Guy loves to grow things, especially pumpkins. No one knows why. Does it really matter? He is encouraged, with guidance, to work in the greenhouse and gardens of Stillwater.
But he hates the color red. No one knows why. It doesn’t really matter. And since no one at Stillwater in particular loves red, the color is kept to a minimum, and he’s been taught techniques to follow when he sees red—such as focusing on his breathing. He also has minimal speech, so we communicate with him in other ways, in drawing.
Nellie’s son, Stuart, on the other hand, has fairly good speaking skills, although a stilted, repetitive style. So during activities that bring the public to Stillwater—and Stillwater is lucky to be surrounded by a supportive, loving bunch of tiny communities and farms—he’s usually the greeter at the annual harvest festival, etc., etc.
And he loves to calculate distances. Somehow he knows just how far it is from anywhere—no one has yet to stump him—to Stillwater or anywhere else. He’s fascinated with maps. So he’s allowed to study them, only not to be so obsessed with them that he doesn’t do anything else.
But he seems to have no comprehension of time. The staff at Stillwater works with him on that.
Although Guy is a much older cousin, he is really emotionally like a younger brother to me. And for Nellie and me and the other parents or caregivers streaming in, Stillwater is like a big old extended family. We come from all walks of life, from nearby and far away, to this place to make sure our loved ones with autism find the shelter and support they need to function as fully as they can—more fully than they would in a traditional institution or even in our homes—and we support each other, calling and e-mailing and sharing laughter and tears. Just like a big old family.
“Have you been following the state budget-cut news?” Nellie asked.
I nodded. “I have. Scary.”
She nodded. We both knew quite well that Stillwater—though funded through private donations and trust funds from families of residents—also needed state funding. Yet, the state was cutting funding to any number of programs for the disabled, elderly, and poor.
“I’ll do anything I can if that is what this is about—fund-raisers, a fund drive, organizing a march in Columbus, even if it means leaving my job . . .” Nellie’s eyes watered. She lived up in Detroit, working as an insurance agent, supporting two young grandchildren, whose parents—Nellie’s daughter and son-in-law—had died in a car crash. That meant visits for her were rarer and harder to organize. And, like me with Guy, she was the sole guardian of Stuart. Her husband had passed away several years ago and Stuart was their only child besides her daughter. I guessed she’d missed Thanksgiving with her grandchildren, who visited their dad’s parents in Chicago on some holidays, to come down to Stillwater just for that meeting.
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I smiled, trying to look comforting. “I know you would, and I’ll be with you. But let’s wait and see. I haven’t heard anything about budget concerns.”
I visited Guy at Stillwater regularly on Sunday afternoons, and sometimes in between, and often stayed after dinner Sunday nights to help the laundry staff with particularly difficult laundry issues. Sometimes from Edna, one of the laundry room workers, I picked up tidbits of gossip. Stillwater always welcomed donations, of course, but I didn’t think that this particular meeting was about budgets.
The room quieted as Don Richmond entered and went up to a podium that had been moved into the cafeteria for the occasion. My stomach and my throat both tightened.
“Thank you all for taking time out of your Thanksgiving holiday to come here,” Don said. He sounded both sad and nervous. I tensed some more. “I wanted to make my announcement to as many people here in person as I could, rather than just by letter, and I knew many of you would be here for the holidays, especially people from farther away.
“I’m not sure how to say what I need to say, except . . . I’ve loved every minute of my past ten years here.”
Oh no, I thought. Surely Don couldn’t be about to announce what it sounded like he was going to announce. Nellie and I looked at each other. I could see in her eyes that she sensed, too, what was coming.
“As some of you already know, I have long been interested in studying neuropsychiatry. I have an opportunity to go to Pennsylvania to study, and this would place me closer to my parents as well.” There were murmurs and nods of understanding throughout the cafeteria. We all knew Don’s dad had suffered a debilitating stroke a year before, and that Don’s mom could use some help, and that Don was close to both of his parents.
“So, it is with both sadness and joy that I announce my resignation as director, effective the end of this year,” Don said. There was a collective murmuring and I felt tears prick my eyes. “But Assistant Director Mary Rossbergen will take over at that point. We’ve already started working on the transition. The board of directors and a search committee that will include guardians of residents and our psychiatric and medical consultants will be formed early in December.”
As he said this, he looked toward me. His gaze crossed the room and our eyes met briefly.
Me? He thought I should be on the search committee? Nah—that had to be wishful thinking on my part. I was sure the Stillwater board would want more educated guardians on the committee—people like Nellie.
I reached over and patted her arm. She had pulled a tissue out of her purse and was dabbing at her eyes. Don was taking questions, and I would have loved to stay, but I wanted to get back to Mama. I felt uneasy that I’d left her alone in my van—and not for her sake.
“It’ll be okay,” I whispered to Nellie.
“I know,” she whispered back. “It’s just that . . .” she stopped, her voice catching. I knew just how she felt. I gave her another pat, and stood up, working my way quietly out of the room. I’d find out more the following week, when I’d go up for another visit.
I slipped out of the cafeteria and into the lobby—really just the front parlor of the old, big rambling farmhouse that had been converted over and added on to, to create Stillwater Farms. I was just about to the front door when the door to the activity room opened. Mary Rossbergen came out.
“Josie! You’re leaving the meeting already?” she looked confused, knowing that wasn’t like me.
“I have . . . out-of-town guests,” I said, stretching the truth just a little. “I know you’ll do a great job, but—”
Mary patted my arm, as my voice caught, just as I’d patted Nellie’s only moments before. Maybe I wasn’t taking this as well as I thought.
“Things will work out just fine,” she said, glancing at the door to the cafeteria. “How did everyone seem to take Don’s announcement?”
“Definitely surprised. I’m sure everyone is sad to see him go, but understands. This move sounds like the right one for him and his family.” Who among us couldn’t understand the call to take care of a loved one? “Is everything okay? I was surprised that you weren’t in there.”
“I meant to be. We had a surprise visitor show up.” She looked at me curiously. “But of course, you knew that.”
My heart clenched. I glanced at the exit door. Oh no . . .
“Your mother is really quite charming. I can understand her eagerness to see her nephew after all of these years. But I’m a little surprised you didn’t call ahead—”
There was just the faintest bit of admonition in her voice. Of course I knew not to spring surprise guests on the Stillwater staff or residents.
I put a smile on my face and said carefully, “My mother was a surprise guest this weekend. I told her to wait in my van. I’m sorry she didn’t listen to me. Where is she?”
Mary smiled reassuringly, mollified that I’d at least tried to keep my mother in control, but she still looked a bit confused. No wonder. Everyone knew my parents hadn’t been part of my life since my early childhood and just accepted my Uncle Horace and Aunt Clara as my parents, as I had.
“She’s in the activity room—and don’t look so worried. Stephanie and Robert are in there, too, and they have her working alongside Guy on a project.” Mary looked thoughtful for a moment. “She’s actually quite good with him.”
We said our good-byes. I took a long, deep breath to steady myself. As much as I might want to dash into the activity room and yell at Mama for ignoring my plea to just wait in the van, I knew how upsetting that would be to Guy and the other residents.
So I entered the room, quietly.
Stephanie and Robert had Guy and several residents working on a craft—in this case, mosaic trays. The trays would be sold at the craft fair in a few months.
For Guy, this was a perfect wintertime activity. One of the things he liked about the greenhouse work was the careful handling of small seeds.
For the mosaics, I knew, there wasn’t a set pattern or design. The residents who liked working on the mosaics were given a collection of tiny tiles and the trays and the glue, and created their own patterns or just glued them down abstractly.
For Guy, of course, there were no red tiles. He seemed to like working in pale blue and green and cream. And he always placed the tiles one right next to another, starting in the upper right hand corner, working row by row, never working out a design ahead of time. And yet, his trays always ended up looking like an enlargement of a wave or swirl.
Guy stood at the work table—he liked to stand and found sitting often uncomfortable, and the staff didn’t force him to sit if he didn’t want to—rocking from foot to foot. He liked rocking, too. A rocking chair was one of the only ways he would sit. He wasn’t very verbal—just talked in brief phrases, usually repeating what he said several times, sometimes reversing the words of the phrase.
Mama sat on the chair that was for Guy, if he had wanted to use it.
Carmine, one of the few female residents of Stillwater (autism occurs more often in men than in women), was brushing my mother’s hair. Mama didn’t seem to mind, and I knew this was a treat for Carmine, who would brush hair all the time if she could. It was one of the few ways she would relate to others. Usually, she was aloof and preferred to be alone.
In fact, Mama didn’t even seem to notice Carmine’s brushing of her hair. She just stared up at Guy, fascinated with him, her eyes filled with wonder. He didn’t seem to even be aware of her presence.
And I saw two things in Mama’s face. One was wonder. And the other was sadness.
As much as I wanted to hang on to it, I felt my anger draining away—at least, most of it.
“You’re mad at me,” Mama said for the third time on our drive from Stillwater Farms back to Paradise.
“No, I’m not,” I answered for the third time—this time through gritted teeth. “Just annoyed.”
Then we lapsed into silence—well, our own silence. I had the radio on the Masonville country
station—WHEE. Dolly Parton was singing about love, loss, and hope. Mama started humming along and stared out her window, taking in the stubbled, snow-draped fields and farmhouses and grain silos and patches of trees as if she were visiting a foreign land, all new to her.
I tried to take pleasure in the swirl of snow as I drove—and couldn’t. I was fuming.
“Damn it, Mama, why didn’t you listen to me and sit in the van and read, like I told you to?” I burst out, and then winced. I sounded like I was berating a small child. Which, in attitude at least, was how she was acting.
“See, I knew you were mad at me.”
I groaned. “You don’t understand. You can’t just walk into a home like that the way you walk into, say, a restaurant or hotel lobby. Adults with autism . . .”
“No one seemed upset, at least, after that nice Mary
Rossbergen and I chatted. And I had a nice time seeing Guy again . . .”
“Yes, it worked out okay this time, but . . .”
“. . . he looks just like Horace did at that age,” Mama said. She wasn’t listening to me. Her voice had taken on a different quality—a little wistful, a little distant. “Same beefy build. Square jawline. I remember how excited Horace and Clara were when they found out they were finally going to have a child—they’d had a hard time trying, just like Mama did. I was eight when Guy was born. And about eleven or twelve when they realized something was really, really wrong—that Guy didn’t relate to other people the way other kids did, that he rarely talked and when he did, he repeated phrases over and over or mimicked what other people said.
“My parents—especially Daddy—wanted Horace and Clara to put Guy in a home far away, an institution. The doctor . . . Daddy . . . all said it was because Clara was a bad mama that Guy had autism. People believed stuff like that then. But Clara didn’t let them get to her. And Horace stopped talking to our parents, rather than letting his wife hear such nonsense.
“I was proud of them, but I missed Horace. They knew that, and one day, when Guy was eight, I went over to visit, anyway. I told them our parents said it was okay, which was a lie, but I knew Horace would send me back home if he knew I wasn’t supposed to be there.
