One looks for a trauma and finds none. She was rarely sick, never severely so. A few stopped-up noses, unaccompanied by fever. Chicken pox at six months — an unusually mild case. At seventeen months, an earache. We guessed because she whimpered and rubbed at her ear, for she was not talking. We played safe and called the doctor — for the first time in her life. She was already better when he came, leaping up and down in her crib and laughing. I remember he exclaimed, ‘What a lovely baby!’ Yet surely it had begun by then.
She was not ill, nor was I. No one was hospitalized. We left her only once, when she was nine months old, and then only for a weekend. Nonplussed, one looks for less obvious causes — events and experiences that went unnoticed at the time but that could later reveal their true significance. Once a child ran with her in her stroller, hit a bump, and pitched her out on her head. An injury? But I picked her up undazed, crying lustily, her eyes not even crossed. Then there was the trip we took in Elly’s second summer, a month after her first birthday. It was a typical station-wagon safari from friend’s house to friend’s house. The first part of the trip had been pleasantly uneventful. We had driven to Rhode Island, stayed there a week, and were now on our way to Maine. We broke the trip in the middle, staying with a student who put up all six of us in a room of his boarding-house. Two beds, floor covered with mattresses, Elly in her car-bed, by now too small for her. She didn’t like it, and cried, and I spent most of the night rocking her, though ordinarily she was a good sleeper. Nobody slept well, and the next day’s drive was one of those trivial nightmares that any family lives through on occasion. The children were intermittently crabby, we ran out of gas, we even lost a five-dollar bill out of the window. Elly was fretful from the start. She wouldn’t go to sleep, and by the time we had been going half the day she was crying steadily. We arrived exhausted, and spent the next three days confined to the house by a nor’-easter as seven children who didn’t know each other interacted in one not-very-large living room. Elly fretted constantly. I had never seen her like this. Then the weather lifted, she crawled outside, alone in the quiet garden, and we had no further trouble. Did it start then? Was that cramped and crowded week the beginning of her retreat?
I doubt it. Nothing so ordinary should be able to cause a major psychological disaster in a baby — not if the baby were healthy to begin with. But I record it nevertheless, as I record here everything I know of those first two years — the measles and the colic and the bump on the head and the fact that I was an intellectual mother by no means totally accepting of her feminine role, who did not at all want another baby. Out of these come the possible explanations — out of these, or out of whatever may in time be elucidated in the complex balance of a baby’s metabolism or the choreography of the electrons in its brain. Every piece of potential evidence must be recorded in this account, not least the evidence that can be used against me. We need to know all we can if someone someday is to understand at last what is relevant and what is not.
So Elly grew, and though we look back and remember one incident or another, the onset of the condition was imperceptible. We perceived we had a child who, at twenty-two months, was not toilet-trained — but neither were most of our neighbour’s children. She did not walk, but the little boy down the street had sat contentedly in his playpen until he was two. She did not use a spoon — but she fed herself efficiently with her fingers. She spoke only a few words — but the onset of speech in children is notoriously variable, and every parent of a slow talker is aware that Einstein didn’t talk until he was four. The various signs that now seem so clear then seemed easily attributable to individual differences. One should not, after all, push one’s children. How many times did someone remark that of course I was so used to bright children that when I got an ordinary one I thought it was slow? Elly seemed alert, beautifully co-ordinated, and contented. We stored up the differences in our minds but we did not worry, having learned in ten years of parenthood that events usually render worries irrelevant, and that worry itself can harm a child more than most of the conditions one worries about.
Only we began gradually to be aware that we had begun to think of Elly as a ‘difficult’ child. She had been such an easy fourteen-month-old. Since she didn’t walk or even crawl upstairs it had been simple to keep track of her, although it was hardly necessary. Extreme in her caution, delicate in her judgement of levels and edges, she seldom fell and rarely hurt herself. I could be sure she would open no bottles, turn on no faucets, teeter on no high stools. And for some time, busy with my other children, I was pleased that she made so few demands on my patience. She crawled contentedly about, never very far away; she took long naps and bounced gaily in her crib when she woke up. She did not attempt to climb out, but neither had the other children at that age, and if she did not call me, I thought nothing of it. This was independence. She made few demands upon me and I made few upon her. She was so self-contained, so cheerful in her limited round of activity, that there were none of those battles of wills that take place between mothers and more active children. I began to put her on the pot at thirteen months, after breakfast, with a cookie, as I had Becky and Matt. There was some response for the first week or so, then nothing more. I let it go ‘until she was ready’. I could afford to be relaxed, with a mother-of-four relaxation. I did not know she would not be ‘ready’, even partially, for four more years. I made no issue over her learning to spoon-feed herself. She ate neatly, and since she took all her meals at the table with us it was easy to feed her the sloppy foods her fastidious fingers would not touch. Least of all, in our family, did it seem necessary to urge her to walk. So life with Elly was easy — until some time in the second half of her second year, when gradually we began to feel it wasn’t easy any more.
Not that she had changed. She was as undemanding as ever. But parents’ expectations of a child approaching two grow more pressing. As she grew older, though we were relaxed about her talking, we expected her to understand the simple things we said to her. Yet we would ask, or forbid, offer a cookie, ask her to come or to go, and there would be no response. It was as if she had not heard us. Had it always been so?
It became increasingly difficult to leave her with baby-sitters; they expect a child nearing two to respond to simple commands. They expect a child nearing two to respond to a lot of things — a tone of voice, a smile, the sight or sound of children entering a room. Elly, contented on the floor, would not even look up.
We have photographs from this period too. One shows a plump blond baby looking into the camera with an expression that is curiously tense. Not at all the serenity I remember, certainly, but I also remember the struggle we had to go through to get those pictures. David took them as always, and the rest of us, the children and I, put our whole effort into attracting Elly’s attention and getting her to look at us. Such unusual, persistent goings-on — no wonder she looked worried. Another picture is relaxed enough — Elly limp as a rag doll in her sister’s arms, her lovely face looking beyond us into space. Another is quite a success — at first glance. Elly is smiling, even laughing. But she is laughing at no one. The picture shows a forest of arms — Sara’s, mine — two of us tickling her to achieve that gaiety which even in the pictures looks somehow frenetic.
Not that she never laughed spontaneously. She did, and if we could have caught it, it would have made as normal a picture as you please. But that laughter was indeed spontaneous — it welled up from nowhere, it related to no human situation. Nothing in our words or our expressions would generate it, save that wild tickling, the direct bodily invasion of her privacy. The children tried it a little, for the picture’s sake, and the laughter, and the closeness to the pretty baby sister. But they tried it less and less, and at last where they were not noticed rarely intervened. She did not bother them and she did not need them. On all fours, from room to room, from back yard to front, down the path, up the driveway, she followed her different drummer. I remember one sunny spring day, the yards filled with playing c
hildren, my neighbour and I standing and watching Elly as she crawled serenely away from us all. Something about her isolation — she was so tiny, and already so far away — made me say, only half joking, ‘There’s nothing the matter with Elly. She just has a distorted sense of what’s important.’ My neighbour laughed at the application of such inflated language to a baby. But it is I who have had the last laugh, if you could call it that.
3. Doctors and Diagnoses
What the doctor said was, ‘If you’re not worried, I am.’ I do not have the novelist’s ear for remembered dialogue, but some words I have not forgotten. Elly was twenty-two months old, and she was in a doctor’s office for the first time in nearly a year. Only once had a doctor seen her in the interim — for the ear-ache mentioned in the last chapter. Then, Elly had been cheerful and secure in her favourite place, her crib; he was not her regular doctor, and he had never seen her before. He had exclaimed, as recorded, that she was a lovely baby.
A house call is an unusual thing for us; we have had perhaps four in fifteen years. We are lax about doctors, having been lucky enough to be able to take health for granted. We were never ones to bother a doctor with monthly check-ups of patently healthy babies. Unlike most of our friends, we had no paediatrician. We didn’t think we needed one. I had no obstetrician for Elly; I didn’t think I needed one. The excellent general practitioner who delivered her, saw her three or four times in her first year, checked her progress, and gave her routine injections. She had a mild eczema at thirteen months; he cleared it up with the only shot of penicillin any of my children has ever had. It was time for her vaccination, but because of the eczema the doctor suggested we defer it. Characteristically, months had gone by before we got around to taking Elly back to him. Hard to believe as that seems now, we went to get her vaccinated, not to ask about her strangeness. I was expecting nothing eventful when I carried Elly into the office and set her on the examination table. The doctor asked if she was walking. I said no, but that I wasn’t worried. Becky and Matthew had both walked late, and besides, Elly was already beginning — she’d walk with me if I held her hands. I tried to show the doctor. Elly’s knees buckled and she relaxed into a crawl. ‘Does she talk?’ ‘A couple of words.’ Not suddenly, but slowly and mercifully, the realization began to take form. Any one symptom might be insignificant. Children differ. But add them up…
But we had not nearly reached that point, the doctor or I. It was merely that he thought she should be tested under hospital conditions. There were two obvious possibilities. One was phenylketonuria, a metabolic defect more common in blue-eyed, yellow-haired girls, causing retardation if not checked early but controllable with diet. The other was thyroid deficiency, which would explain not only the lack of speech — a slight retardation which could be caught and treated — but the delayed walking. The joint-structure is still immature from the deficiency perhaps… Curiously, the nascent anxiety relaxes. The doctor has seen only this limp and passive creature on his office floor. I, who remember Elly hanging from her father’s thumbs, supported only by her strong fingers, who watch her daily leaping and tumbling in her crib as on a trampoline, do not really expect to hear that there is anything the matter with Elly’s joints. And of course there is not. In three days of hospital tests they find no evidence of physical deficiency at all. Our doctor watched her, checked her hearing, called in the paediatrician, we hadn’t thought we needed. Together they agree that she is ‘still within the curve of normal development’. It is the paediatrician, who does not know our family, who remarks that ‘she seems like a child who has been raised very much alone’. Considering that she has spent her short life in a house pulsing with activity, the diagnosis is already implicit in that sentence. But neither we nor the doctors know that.
I was irrationally relieved to find the tests were negative. I had never had a child in the hospital. The doctor had advised against visiting Elly; it might upset her. That first night she had been away, I had, for the first time in years, no small child to put to bed. I sat down in the living room in unaccustomed leisure, but I could not read. I put on the Brahms Requiem — the music I had chosen the night of Elly’s birth to fill the time of the first slow labour pains. ‘Behold all flesh is as the grass and all the goodliness of men is as the flower of grass.’ I sat in the easy chair and listened and wept for my baby whose flesh was as a flower, who had begun her birth to this music and who might, it seemed, be something less than perfect. So much of pride had I invested in my bright and beautiful children and my great good luck. I could actually be glad when the doctors found no physical deficiency. It was as I had thought; my child was strong and well, she would walk when she was ready. Nothing was wrong with her bones or her brain. She would grow and take her place in a family lovelier than anybody else’s.
It is possible to learn humility. A year later, Elly would be examined again, in a bigger hospital with more refined techniques. And this time I would wait at night and hope and nearly pray that they would find a physical deficiency — something that could be controlled with a diet or a pill. And then my baby’s perfect health would be a heartbreak to me and no source of pride.
But it was not yet time for heartbreak. Elly’s doctor and the consulting paediatrician had told us to wait six months before we began to worry. I remember another sentence: ‘I don’t think you got a lemon.’ We heard it with gladness; in such a case one does not quarrel with phrasing. We waited and watched. Elly learned to walk shortly after she came home from the hospital, as we could have predicted. She learned new words (it was the day after she came home that she said ‘scissors’). But we began to see that she forgot the old ones, and as the months passed she paid no more attention than before to what we said to her. If she had come out of the hospital still within the curve of normal development she did not long remain there. We watched, with ever sharper and more experienced eyes. As the months passed and Elly fell farther and farther behind we did not seek other opinions. We were determined from the start we would not repeat the lacerating pilgrimage of other parents of the retarded and abnormal, the disrupting and expensive treks from specialist to specialist, city to city, trying to buy hope.
Speechless, uncomprehending, unable to care for her physical needs, Elly was retarded in every functional way. If occasional actions suggested intelligence, common sense told us that it must be so with all retarded children. All parents would be tempted to magnify these pathetic flickers into the illusion of significance.
That year of waiting was not passive. That was the year we began the continual series of minor assaults on Elly’s fortress, the siege that is the subject of this book. But it was a year of waiting nevertheless. Intuitively we felt it was too soon to press for certainty about this child’s condition. It was better, we thought, to wait — better for Elly and for us all. Better, quieter, more dignified, more normal, to carry on the life of the family as usual than to take these ambiguous symptoms to other doctors and bring home other ambiguous opinions. More dignified-and also more intelligent. My husband is a physicist, and in our house the disciplines of science are deeply felt. We guessed that doctors, insofar as they are not magic men but scientists, work as other scientists do, by inferences drawn from evidence. There was little evidence here. Two doctors had found it insufficient. We would wait until we could accumulate more.
We waited out those six months, and six months after that. Then, reluctantly, we prepared for a second attempt at a diagnosis. Elly was not quite three.
We did not mean to shop around and we did not have to. We were lucky enough to have a close friend, himself a doctor and professor, with many connections in the research hospitals of both Boston and New York. His little boy, just Elly’s age, was severely retarded both mentally and physically, though with none of Elly’s mysterious remoteness. Our friend had already been through it all. His own search had made him wise. He knew what we needed: a doctor who was abreast of the most recent developments in mental and physical illness but who was above all
an intelligent and warm human being. He even knew who he was. Dr Blank was a nationally known paediatrician, a professor of paediatrics, an eminent man. There should be no temptation to appeal his decision.
We drove to Boston with Elly and stayed the night with friends. In the morning we got Elly ready to see the doctor. I dressed her up in navy-blue dotted swiss with a red sash. Pretty clothes meant nothing to Elly, but she looked charming when we took her in and that meant something to us. I do not know if it is obvious that the first visit to a doctor to consult about a mentally abnormal child is a very tense experience. This doctor was the friend of a friend; not many parents are so lucky. Yet still we were uneasy. Would it be possible to talk to this man? Would he want to listen to what we could tell him? Would he respect us that much? We imagined ourselves in his position, examining the healthy, attractive, gravely defective child of two people he did not know. He was an eminent and experienced man but he could analyse only what he saw, and in this hour before us — in any given hour — what could he see of Elly? What was there to be seen? It was highly unlikely she would exhibit one of her rare signs of intelligence right there in his office, or even speak one of her five words. More probably she would sit like a lump, as she had sat in the doctor’s office a year before, and then such conclusions as he could draw would rest only on that meaningless silence and on what we could tell him. And why should he believe that?
But our luck held. Our friend had chosen well for us; we profited from his own false starts and blind alleys. Dr Blank was a rare person, not merely knowledgeable in his profession but gifted in his understanding of people. He made it easy for us to tell him what we had learned about making contact with Elly, and using it he made of the routine physical examination an opportunity of reaching Elly as few could reach her. We suggested that he tickle her and he did. He jigged her up and down. He wasted no time with words. He had a way with children and he used it. Within ten minutes he had seen her smile and laugh — a common enough sight to us but one no doctor had ever seen before.
The Siege Page 3
