Category: Autism

Tears

For years, I kept my daily life separate from my relationship with Mark and Tommy, even to the point of denying they were a problem for me. In my first experiences with therapy, I mentioned them as a matter of course while giving the family history, but insisted that my real problems lay elsewhere. In the meantime, however, there was a subterranean river of grief that would break through to the surface occasionally, surprising me for a spell before disappearing again. The water metaphor is an apt one, because when I finally accessed the grief, I did so through tears that seemed to have no end.

I remember clearly a scene at Tanglewood during my first summer there. I was just 18 and was between my first and second years of college. I had had a difficult time managing and masking my stage fright, but on one night in particular it broke through during a concert of the Fellowship Orchestra, when I felt so panicked that I abruptly rose from my seat among the violins and walked off the stage in the middle of the performance. Backstage I almost literally ran into a trombonist who had unsuccessfully tried to romance me earlier in the summer. We walked around the grounds while I poured out my anguish in a flood of shame and frustration, until my parents found me and my father took over. He told me that he and my mother had watched me struggling with this torment for years, and he urged me to give up.

Now in the American vocabulary, quitting is commensurate with failure, made all the more blameworthy when it is chosen. What’s more, being advised to quit meant that I would never know whether I might have succeeded in conquering my fear if I had persevered. So I struggled with the notion as we walked, the fork in the road between the easy way out and the valiant fight to the end. And then my parents drove me home, and I somehow was moved to dig out the family photo album, pictures of me and my brothers as we were growing up, and I cried over them for what seemed like hours, grieving for all that I had lost.

That night marked the beginning of my tears. For years thereafter I would cry over my brothers almost any time I was left alone. If I was on a bus, I would turn my face to the window and cry. If I was alone in my room, I would pace the floor and cry. I cried in therapy, I cried in bed at night, I cried wherever and whenever I was alone. There were thoughts that were guaranteed to trigger the tears, like the thought of how sad it was and how much I missed them. Sometimes I would dwell on a fantasy of my brother Tommy’s death, imagining a phone call, usually while I was in a large group of people. In my fantasy I would break down completely, finally relieved of the heavy burden of maintaining an appearance of functionality.

At some point I began to suspect that the grief was for myself and had little to do with the people my brothers actually were, but I could not make sense of that distinction until my mother told me that when she first learned of the diagnosis, particularly of the younger of the two, she grieved for herself, then grieved for them, and then finally grieved for me. As the sister my grief may have come third in line, but it still had a place, and so I continued to grieve for myself.

Along with the grief there were painful fantasies of what might have been. I would look at young men who seemed to be my brothers’ age and wonder what my life might have been like if these “normal” people had been my brothers instead of the ones I had. I imagined Another Laurel, the one who grew up in a normal middle-class American family, the family that was taken away from me. What would she be like? I understood enough to know that it was impossible to tell, but the question needled me nonetheless. The family I actually had appeared to live out its life under a cloud of sadness and isolation. What would it be like to live differently? Would I be like these carefree young people I saw around me? (although of course I had no real concept of what their lives were really like either).

There came a day when I was listening to an interview on the radio, about the complex emotions of parents of autistic children. I suddenly thought, “I’m done with that.” I wasn’t done with grief, but I was done with thinking things either could or should have been other than what they were. I may have been painfully slow about it, but I had finally passed through the earlier stages of grief into a grudging acceptance.

Childhood’s End

I mark the end of the idyll of childhood as the point of my gradual awakening to the reality of my brothers’ situation. For many years I lived in the sunshine of my companionship with them, when we all were children and our lives were full of fun. The first shadow fell when I must have been in 4th grade or so, around 8 years old. There was an increase in tension around the house from both my parents, my mother in particular. The story was that the school in Rhinebeck could no longer keep Tommy because he was becoming destructive. There had been an incident in which he had put his hand through the glass on a door, and cut himself badly. He would need to move into the State Hospital system, specifically to the Metropolitan State Hospital in Waltham, which had an adolescent unit.

My reaction was to see the whole business as an adventure. I compared our family emergency to a chapter in Little Women, “Dark Days,” about Beth’s descent into her fatal illness. Now we had our very own novel, with our very own Dark Days. “I like Dark Days,” I told my mother, “I think they’re fun.” She groaned. On our first visit to what I thought of as Tommy’s new school, I spent some time walking around the grounds, imitating my brother’s gait with my hands up around my ears, until a staff member told me to get back to the car where I was supposed to be waiting for my parents. I was a bit disappointed not to have been taken for a resident. Later, when we were all together, a resident asked if I was a new girl, and my smart-aleck father said, “No, she’s an old girl.” I was pleased by the question, but had no idea what to make of my father’s joke. Soon after we left Tommy there and went home.

At some point during his stay at that hospital, my brother changed. He never was much of a talker, but he did have a couple of things that he came out with regularly. For example, he always loved getting donuts, and would say, “Take a ride in the donut car!” when he wanted us all to go out and get some. He also knew his abc’s, although he had a tendency to rush through them, ending with “w-x-y-zebrudder!” (because there was a picture of a zebra in his book at that letter). There was a particular bowl he liked with a flower pattern, which we called the flower bowl. It became Tommy’s bowl. We would laugh together, he would sing, he would throw his arm around me when we sat side by side.

The person who replaced that Tommy was far, far away, barely verbal, and unhappy. One Sunday a month my parents and I would drive from Pittsfield to Waltham and visit him, drive around with him for awhile, and then return him to the hospital.  On one such occasion we were told that he was in the medical wing. Apparently another resident had stuffed some burning newspapers down his shirt, and he was being treated for second and third degree burns. Lord only knows how the other person got his hands on matches, but then again the state hospital wasn’t known for being a great place to be. We went into his room and saw him there, in bed, wrapped in bandages. He said, “Stay in bed,” demonstrating that he had understood his instructions, and “Drink water.” I felt nothing. The next day I was back in my own world, in school. As I sat in homeroom I thought about how odd it was that the day before I had been witness to my brother in his suffering, and now the world was going on just as it always had been, with no one else the wiser.

(Many years later, when I had taken over from my father as Tommy’s guardian, I got some paperwork from his then-current residential program and read his history. I had never seen it before, specifically the fact that during his stay in Waltham he had received approximately 50 insulin induced coma treatments. My blood ran cold. As I began to consider what this meant, I speculated that Tommy lost much of his functioning as a result of that treatment. Is this true? I honestly don’t know, but it’s as reasonable a story as any other.)

Eventually, Tommy would be moved again to the State Hospital in Northampton, Massachusetts. The day of the move, I rode in the back seat with him. As we sped along the Massachusetts Turnpike he suddenly became agitated, grabbed my right hand, and bit me, hard. The scar lasted for many years. The people at Northampton eventually “solved” his biting problem by filing his teeth. I don’t think my parents knew this at the time, although they had received reports about biting. We continued to visit him every month. Usually my father would go alone, because my mother just couldn’t stand it, and sometimes I would go with him. I did not know how or what to feel. My emotions had gone numb. I suppose I would just as soon not have gone at all.

Mark in the meantime moved to a school in Berkshire County, nearer to where we lived. His visits home continued at regular intervals, as well as our visits to him. I continued to think of him as my buddy. We made a game of finishing each other’s words, even words of only one syllable. A favorite pastime was the what-would-happen-if-I game (e.g.: “What would happen if I refused to go back to school and screeched really loud and ran out the door and, and, and— threatened to jump out of the car?”). I would come up with ways the adults would take charge, and punishments, and so on, while he would come back with more outrageous responses, until there was nowhere left to go with it, at which point I’d answer, “turn into a great big—“ and he’d finish, “rock!”, thus ending the game.

Eventually, these games became not so much something  we did together as something I did to amuse him. My childhood was over.

 

Growing up as the Donna Reed Show

Okay, I admit it: I’m the kind of tedious baby boomer who reminisces about the 50s and that part of the 60s that came before the real 60s, or as my parents thought, the time just before everything went to hell. Women in those days did their housework in poplin dresses with which they wore stockings and utilitarian shoes, their hair done and their makeup on. My mother’s hands were always full, of laundry, sewing, the vacuum cleaner, or dishes. She always had a fragrance about her, which I called a “mummy smell”: something along the lines of Jergens hand lotion, light and sweet.

I played on the dining room floor under the table, with coloring books and dolls and picture books. I vaguely recall a playpen prior to that, and a crib for nap time. I seem to have memories of very early childhood, of being held in my mother’s arms at the kitchen table, where she would spoon baby food into my mouth and coo at me. I tried talking to her, but she didn’t understand me very well, which was mildly frustrating. In the evenings after the dinner dishes were done she would bathe me in the kitchen sink.

At some point before dinner my father would come home, calling out a cheerful hello as he came through the front door. I ran down the hall to him and he would pick me up and swing me in his arms. He wore a suit and tie, with a grey fedora and grey wool coat. His shoes were always shiny and his shirts neatly ironed. He told me he was “the boss of the bank,” which strictly speaking wasn’t true, although he was the treasurer, close enough. We lived in a two-story white house with black shutters,  a full front porch, a bay window, and an enormous yard with a barn in back for the blue-and-white car.

I have two older brothers, but they didn’t live with us; they were “at school.” Mark was seven years and Tommy four years older than I. Three or four times a year they would be home for visits that typically lasted two weeks, and we would be a family together. In between times we would drive up once a month or so to their school in Rhinebeck, New York. Both our visits and theirs were the high points of my young life. I loved my big brothers and saw them as living an exciting, grown-up life away, bringing welcome noise and laughter into our quiet home. We spent the entire visit playing together, going on excursions in the car, and hiking in the woods looking for snakes and turtles, which we would keep for a day or two and then set free again. Mark was very knowledgeable about the different varieties, garter snakes and grass snakes, box turtles and painted turtles. The fact that some of these creatures could be deadly was a source of fascination—over and over, he would ask our father, “Can I pick up a snapping turtle?” and Dad would answer, “Sure, just as soon as you figure out which of your fingers you don’t need any more.” “No!” Mark would say with a big laugh, and not long afterward would ask all over again.

Tommy was quieter, pacing around the dining room with his hands in loose fists to either side of his head. Once in awhile he would come out with some brief remark, and then return to his pacing. He played with blocks and simple white plastic bricks, or else drew rows and rows of tiny, square-shaped objects on sheets of paper, always in pencil. He would vocalize aimlessly in keening sounds, sometimes singing a little. Outside he liked the swing set in the back, where he would sing loudly as he pumped higher and higher.

Why couldn’t Mark and Tommy live with us all the time I once asked, and my mother simply groaned and shook her head. I didn’t get it. I could vaguely remember a time when Tommy was still with us, at a school across town. Earlier still they had gone to the same school I would attend. On my first day of kindergarten, the teacher called my name and then said, “I had your brothers,” through lips that were pursed just a little, and maybe by then I had some idea why. My brothers were “a handful,” especially Tommy, although according to my mother Mark had been an even bigger handful at one time. That was before he was sent to his first school away from home, a place called Strawberry Hill, where the teachers used a clever strategy to get him to stop screeching: every day my brother loved going along to meet the mail truck, but he could only go if he didn’t screech that day. For awhile he responded by screeching until he was hoarse, but eventually he learned to stop doing it.

These stories were nothing more to me than ordinary family lore, along with the fact that while the boys were home, none of my other friends came around. It was understood that the time with them and the time without them were separate, and I got used to never so much as talking about my brothers with people from our life apart from them, not with people my age or with grownups. I did not break this rule for many, many years.