Queen for a Day Read online

  A year after Jake and I started seeing Stan, I decided to go to a series of seminars on child discipline that a friend of mine told me about. The idea of seeking advice from someone other than Stan made me feel uneasy at first. I was afraid it might make Stan think I had lost faith in him. But he said I should go: it would be good for me to see that Jake and I weren’t the only people in the world who had trouble with their children.

  The seminars were sponsored by a large social services agency in the city; they were free and the parents were even given subway fare to attend—at the end of every meeting the moderator would pass around a sign-up sheet and distribute subway tokens. There was always a pot of coffee waiting for us, and a generous assortment of snacks spread out on the table—Entenmann’s donuts, Cheese Nips, Oreos and big healthy-looking bunches of fresh green grapes.

  As we sat around the chipped Formica table, under the flickering fluorescent lights of that big bare room, we would take turns talking about our children. There was a six-year-old boy who ran up and down the hallway of his apartment at all hours of the day and night; a five-year-old who couldn’t bear to have anything touch her body and was always taking off her clothes, at home, at school, in the playground, everywhere; a four-year-old who liked banging his head against the wall and another four-year-old who was always biting people.

  After a few sessions I realized that most of the children of the parents attending the seminar were autistic. I decided that I had been sent there by mistake. There was no denying I had a difficult child, but he was nothing like these children.

  As time passed, I started feeling more and more uneasy about going to the seminars. Making my way up the stairs, past the larger-than-life-size photographs of children, some of them in wheelchairs, most of them with something visibly wrong with them despite the cheerful smiles they had worn for the camera, I would often have trouble catching my breath. The pictures were faded, and the haircuts and shirts were out of style; it was clear to me that these photos must have been taken a long time ago. These children were all adults now. What had become of them?

  I always managed to calm down once I was in the room, entertaining the group with stories about my unruly four-year-old. The parents seemed to enjoy my stories. They thought it was funny, the way my son liked to swing by his arms from the shower rod in the bathroom and was always flushing socks down the toilet and putting silverware, pens and chopsticks into the pencil sharpener. Their generosity, in the face of all the trouble they had with their own children, touched me.

  They said that Danny must be very smart; they could tell by the kinds of questions he asked and the observations he made: “Why Play-Doh dries up?” “Why clay doesn’t dry up?” “Why is it dark in space?” And his fascination with gravity—the way he was always testing it out by jumping down flights of stairs, jumping off rocks in Fort Tryon Park and throwing things out the window—they thought that was adorable. He sounds like a little scientist, they would say.

  I didn’t tell the mothers about the night I walked up and down 181st Street searching for the new kitchen curtains Danny had sent sailing out the bathroom window. It was an excuse for me to escape the havoc of my household, and I fell into a kind of trance as I walked up and down the street, my eyes panning the sidewalks, the gutters, grates and bushes, the flowerpots, the soil that embraced the trees; kneeling on the rough pavement as I looked under the cars parked along the curb, desperate to find my curtains.

  After wandering around like this for more than an hour, I found one of the curtains stuck behind the wheel of a blue Chevy Nova parked ten blocks away from our apartment house. I never did find the other one, although I would continue searching, days after Danny had set it free.

  I kept on hoping it would turn up, as Danny’s sweatshirt had turned up on the sidewalk a day after I lost it. I had dropped it on the walk home from a friend’s house one New Year’s Eve, and when I went back the next day to search for it, I found it lying in a shiny clump on the sidewalk in front of the candy store where Jake would take Danny for ice cream every Sunday afternoon. It had rained the night before, and the rain had saved Danny’s sweatshirt; it had kept it there in one place. It looked so helpless lying in a wet clump on the sidewalk, covered with footprints and sparkling with a thin patina of ice. I loved that sweatshirt; it was violet blue and brought out the blue in Danny’s violet blue eyes, and I couldn’t wait to bring it home to wash it and dry it and see Danny wear it again.

  There was one parent at the seminar who was never amused by my Danny stories. Her name was Mary. She was the mother of a full-grown autistic man. Her husband had disappeared long ago, and she didn’t have any friends left. She had spent the past thirty years taking care of her son. She had to engage in hand-to-hand combat with him whenever she left the house—he would block the doorway, all two hundred fifty pounds of him. She had black-and-blue marks all over her arms to prove it, which she wearily displayed for everyone to see. A couple of times Mary turned to me and told me that there was something wrong with my son and that I had to get him evaluated right away.

  Whenever Mary spoke to me that way, the familiar terror would grip me, and it wouldn’t leave, not even when I was explaining to her that there was nothing wrong with Danny—that a psychologist had assured me he didn’t “have anything you could pin a label on.”

  I was relieved when Mary stopped coming to the meetings, which clearly had nothing to offer her. Everyone else seemed happy to see Mary go, too. She was the only mother of an adult there. All the rest of us were the mothers of young children.

  Danny’s behavior kept on getting stranger and stranger. He imitated machines more and more often. He still didn’t know how to use pronouns properly: he called “hes” and “shes” “its”; he said “you” when he meant “I.” He asked questions we had answered a hundred times before. His speech seemed to be an anthology of sentence fragments, many of them his own invention, most of them meaningless, but with occasional bursts of lucidity. The repetitious nature of Danny’s attempts at communication (if, indeed, his intention was to communicate—we were never sure) reminded us of the speech of the dolls of our childhood that made one of ten different remarks at random every time you pulled their cords.

  He had an average of one tantrum per day, and whenever he was shown a picture of anyone crying—including Thomas the Tank Engine—he would burst into tears himself. For as long as we could remember, Danny seemed to be trying to express a desire to experience new things (“I want to go far away,” was part of his limited repertoire of sentences for a long time).

  Although there was no end to his curiosity (Danny wanted to know everything about everything), he always wanted things done exactly as they had been done before. When we took him to the playground, he always insisted on traversing the circumference of the park by going from bench to bench, over people when necessary, without his feet touching the ground.

  His way of expressing distress or disappointment was very odd. Occasionally in the middle of a tantrum he would say, “I can’t talk! I can’t talk!” When his grandmother said she wouldn’t give him a second helping of noodles because he had made a mess on the floor with his first dish of noodles, he sang the Barney song: “I love you, you love me, we’re a happy family.” When we wouldn’t give him something he wanted, he would sometimes say, “This is a dream. I’m dreaming.”

  This epoch of our lives came to an abrupt end a year after Pearl Claener urged me to have Danny evaluated for developmental disabilities. It was late August and we had brought Danny along with us to visit Jake’s parents in Plainview, Long Island. I had gone off grocery shopping, and as I was getting out of the car, Jake came racing out of the house and down the driveway to meet me. Danny was missing.

  Jake’s parents’ house sat next to a forest. In the other direction, at the bottom of the long country driveway, was a busy road with cars traveling fifty miles an hour. To the right and left were houses with swing
sets and lights that would attract Danny when he was in the backyard. We would have to check the backyards, and if we didn’t find him, we would have to ask the people in the neighboring houses to help us look for him.

  He might also be in the house, an old mansion full of closets he liked to crawl into and lots of high, wide-open windows. After yelling out to my mother-in-law to search the house, I told Jake to go to the neighbors’ houses and ask for their help. I reminded him to make sure to explain that the little boy in the white shirt and blue shorts didn’t answer to his name. I recall thinking to myself, in the midst of my panic, how difficult it would be for Jake going to strangers and asking them for help, because Jake is very shy. We would always remind each other about his shyness, and his many other strange, isolated ways—the way he would get so completely lost in his thoughts that he wouldn’t notice I was talking to him, the way he had always spent so much time alone—to reassure ourselves that there really was nothing wrong with Danny. Like father, like son. That was all.

  I rushed back to search the streets of the neighborhood in our car. When I made my way out of the driveway, I was relieved to see that there were no police cars with flashing lights on Waukena Avenue, no ambulance or lineup of cars with their horns honking. There was also no sign of Danny. I traveled up and down the main road and all the nearby side streets, and after fifteen minutes of searching, I drove back to the house and made my way into the forest behind my in-laws’ house.

  I knew that Danny would never follow a path, so I plunged straight into the woods, stumbling on the uneven ground, one moment sinking into a shallow pit of wet, spongy leaves and the next stepping on dry branches that snapped under my feet. I searched for the blue of the pullover I had dressed Danny in that morning. As I ran through the woods, shouting out the name that meant nothing to him, I could picture Danny amusing himself for hours, crouched among the deadfalls, the roots and the ferns, running his fingers over the moss, peeling bark off trees, tearing leaves off branches and picking away at their green veins, with no fear, no feeling about the strangeness or loneliness or isolation of being lost. It would be nothing new to him. He was alone in a strange place every day of his life.

  We searched this way for an hour, and then we called the police. Minutes before they arrived, we found Danny: he had been sitting in Jake’s mother’s car the entire time. We had forgotten how much he liked to play with the buttons on the dashboard and examine the levers on the steering column. All the yelling and screaming and the search party we had so frantically organized had done nothing to rouse him from his play. The sound of his name being yelled over and over again was no different to Danny from the other sounds that surrounded him: the traffic on the road, the airplane overhead, the birds chirping, a dog barking, a neighbor’s lawn mower, our desperate cries—they were all just background noise to him.

  It was the end of summer, and we had a vacation planned, and before going away, I scheduled an interview for Danny with a psychologist at a special education school in Riverdale who did evaluations paid for by The District.

  The vacation lasted nine days. We rented a cabin in the woods near Lake Taghkanic. On our last day there, when I was going for a walk with Danny on the beach, I ran into a woman who had been in my Lamaze class. Suzanne was a friendly, nice-looking woman. She was very different from the other mothers I knew, maybe because she was from Australia. There had been a period when it looked as though we might become friends, but we never did, and she had moved out of the city a year after her second child was born. Her first child, who was born a day after Danny, was with her now, four-and-a-half years later, building a sandcastle on the beach a few steps away, and when Suzanne told her to come over to meet me, she came over, and when Suzanne introduced us, she said hello, and told me that I was pretty. The contrast was startling. Danny was in my arms, and when I introduced him to Suzanne and her daughter, he ignored them, and when I tried to put him down, he clung on to me like a crab.

  I have always been in the habit of blurting out whatever is on my mind, whether I want to or not, and as I watched her little girl trying to interest Danny in helping her build her sandcastle, I found myself telling Suzanne I was worried about my son. I told her we were going to have him tested as soon as we got back to the city. Suzanne asked me what I was worried about, and when I told her, she said with her sunny smile, “Oh yes, I’ve heard about that. I was just reading a book about that.”

  I didn’t ask her to tell me what this interesting thing she had heard about was. But I asked Jake later on what he thought she meant. “She meant autism,” he said, and he blamed me for it. He said I always exaggerated our difficulties with Danny, I always exaggerated his odd behaviors; I never presented a balanced picture. If I had told Suzanne how affectionate Danny was, what a great sense of humor he had, how open he was to new experiences, she would never have thought Autism.

  It rained the last day of our vacation and I welcomed the rain, for it was a good excuse to leave that hot little cabin in the woods a day early. It was a record-breaking storm, like nothing anyone on the East Coast had seen in over a decade. There were distinct, white-capped waves on the highway, and our windshield wipers, which under normal conditions were inadequate, were more or less useless, giving me, who was the driver in the family (Jake had let his license expire years ago), only the most meager view of what lay before me on the road. I have always been a fearful driver, and had always especially hated driving in the rain, but now the storm came as a relief to me. It claimed all my attention.

  The evaluation was conducted in a large room in the school’s basement, which was full of toys. There was a big wooden dollhouse, a plastic barn equipped with a fence and farm animals, a toy washing machine and a toy swing set. Danny started examining the contents of the dollhouse. The psychologist, Ellen Camins, sat in a little children’s chair at a little children’s table observing him, and I sat in a little chair next to her.

  Danny didn’t want to leave the dollhouse to take the test, but after a lot of coaxing, he finally agreed to sit down across from Ellen, although his attention kept on drifting back to the dollhouse.

  Almost immediately into the test, Ellen turned to me. (Jake had declined her invitation to sit in the room while she administered the exam. He couldn’t bear to be there.) She said that it wasn’t Danny’s fault that he wasn’t answering her questions; it wasn’t his fault that he didn’t know that an elephant was bigger than a mouse—it was “neurological,” she said. I had been making excuses for his him. He’s very stubborn, I kept on telling her. He’s very independent.

  “He isn’t stubborn,” she told me. “It’s not in his control.”

  Jake came back to the school in time for the language evaluation part of it, and Ellen invited him in, but he said he would rather wait outside. He did, however, agree to come in when it was time for Ellen to summarize her preliminary impressions of Danny. The formal scoring of the tests would take a couple of weeks, but she said that she didn’t need to see any numbers to know what was the matter with our son.

  “It’s neurological,” I said, turning to Jake.

  Danny was inspecting the dollhouse again, and Ellen told Jake to sit down and she proceeded to address us together. She spoke with an enthusiastic, almost congratulatory, smile on her face. She never dropped that smile.

  “First of all, he’s a delightful child. And he’s a very happy little boy. It’s a tribute to you as parents. That your son is so happy. Most of these kids aren’t happy. He has a wonderful sense of humor, and he’s very bright.” She said it all pretty much as though she were giving us an award for being the parents of the cutest little boy in the world.

  Looking at Jake, she explained, “Often during the testing—as I told Mimi—he would get a hard problem right and then he would fail to answer an easy one.”

  “He’s not very cooperative, I guess,” Jake said. “It’s hard to know, it’s hard to get an accurate asses
sment with children so young. And especially with a child like Danny, who doesn’t answer questions.”

  Ellen agreed, but she said that she was nevertheless confident of her assessment. She described Danny’s problems with language and communication. She said that in order to compensate for his verbal weaknesses, he was a “visual learner,” and this was why he had such a precocious understanding of geometry and knew the difference between a parallelogram and a trapezoid, something that was very unusual for a four-year-old.

  And there was a term for what he did when he repeated back what people said word for word: it was called echolalia.

  Jake said, “Like when he goes around repeating phrases from the Disney videos.”

  “That’s right,” said Ellen, and her tone became chatty for a moment. “It’s amazing what memories these kids have.”

  Sitting there in those little chairs, Jake and I felt like the smallest people in the world, and Ellen, who was a tiny, soft-spoken woman, seemed like the most powerful person in the world.

  We sat there, abjectly, and questioned her about Danny’s future. Would he go to a regular school? Ellen thought that after two years of special education, he could be “mainstreamed.” Would he go to college? No reason why he shouldn’t. Would he get married? He could get married. Would he have a profession? She looked into her crystal ball and promised us, yes, he could have a career. He could be an architect, or maybe an engineer. He probably wouldn’t grow up to be President of the United States. Nor would he ever be the life of the party. But he was smart. He was very smart. Although he had many significant developmental delays.

  Then she took out a questionnaire and asked us a long list of questions about Danny, to which she told us to answer “Always,” “Sometimes” or “Never.” She urged us, whenever possible, to veer on the side of negativity. That is, we should try to show Danny at his worst, not at his best; that way we would have a better chance of getting more services from The District. She spoke with an air of complicity that confused us. The message we seemed to be receiving was that we would have to be very clever—devious, even—in order for Danny to have any chance of The District giving him the help that he needed.