Not that Elly’s life was hemmed in by prohibitions. It did not have to be. She did very little, and very little of that needed to be controlled. She was not destructive but passive, not aggressive but withdrawn. This made our work easier. What touched her own safety directly she herself looked out for. Because of her pathological caution there was no need to forbid edges or heights. She opened no bottles, allowed nothing unfamiliar past her lips. Danger from traffic was something else; as I had no need to teach Elly physical caution in running or climbing, so I had for years no hope of teaching her to look out for the danger of an oncoming car. I looked out for her myself and thanked heaven we lived on a cul-de-sac.
There were only a few things we had to be strict about, so we could come down hard on those. For the rest, she could do as she liked. Since she could understand so few prohibitions — at this time, in fact, I do not think she understood any — we were glad to keep them to a minimum. They concerned almost exclusively damage to other people’s property — extended to her own if the situations were too similar to expect her to distinguish them; for example, she was not allowed to tear her own books or any others. I did not, in these early years, say or suggest ‘no, no’ for a whole range of behaviour that might well have been limited. I let her eat snow. I let her splash through puddles. She was an unusually healthy child and I had worse things to worry about. I let her soil herself, though to keep her socially acceptable I moved fast to clean her up. I let her make puddles on the floor; by the time she was four her natural fastidiousness allowed her to make very few. I did not try to force her to the pot, guessing it would be useless. Characteristically, she developed her own strange controls; by the time she was four she was holding her urine all day, to empty it into her bath. It seemed to cause her no discomfort; after a while it caused me none.
I did not try to modify such behaviour because it did not seem important to me. What was important to me might have seemed equally unimportant to another: it was important to me that Elly should not disturb me at night or wake me early in the morning. Since this is not something one can effect with hand- slapping and ‘no-no’, I made use of every expedient I could think of. I put animal crackers in her bed for her to find when she waked up. Later (for she was four before she climbed out of bed and five before she opened her door) I went to the length of locking our bedroom door when she got into a spell of waking us at six-thirty. Not that I approved of locking a little child out; I did not, and least of all Elly, whom I had spent years teaching to want my company. The point is something else; it goes beyond what specific behaviour should or, ideally, should not be limited, or what methods are justifiable in limiting it. The important thing is not what the child should be allowed to do, but, rather, what you can stand. For beyond the importance to the child of any specific prohibition, even if it affects such potentially sensitive areas as toilet training or exclusion, is that which is of the most crucial importance of all: that the people who live with the child must not be pushed beyond what they can endure. People can stand most things if they have to, but no one can stand everything. Other mothers might have got up cheerfully with the child at 6. 00 a. m. and balked at the puddles. If so, they should have done what they had to and gone guilt free. What is important for the child is not that it be liberally treated in this or that aspect of its behaviour, but that its mother and its family do not fall apart. If they go under, the child goes too. For every family the last straw will be different. Whatever it is, from smearing food to being followed into the bathroom, it must be eliminated, firmly and with no sense of guilt. That is what discipline is for. Any child would sense the firmness and find security in it. An autistic child will go further and, once the firmness of the limit is appreciated, will welcome it as an essential part of its routine.
No more is being said here than that if an abnormal child is to be helped in the family, by mother, father, other children — then mother, father, and other children must be considered as well as the abnormal child. As most families are set up, it will be the mother who does most of the considering, and one of the things she must consider is how much she can stand. It may be a great deal, but she must not take on everything in a misguided spirit of self-sacrifice, since if she cracks no one will be helped at all. She must assess how much the rest of the family can stand, too, before they begin to feel that this burden is more than they can bear. What I had to do was to keep Elly and her problems as peripheral as I could to the major concerns of my husband and my children.
I even had to keep her, in some sense, peripheral to my own. Not that this was possible in the hours and days at home with Elly, shifting puzzle pieces, sitting in closets, lying under quilts. As long as I was at home, even while she was asleep, Elly was in my mind. I do not know what would have happened to me and to us if I had followed the rigid conception of my duty that I had had when I became pregnant again with this fourth child. I had thought that because I must give no less to this one than to the others I would put off my re-entry into the world for another six years — until she was ready for school. I would see about going back to teaching then. Luck, however, was with me here, as in other things. Circumstances changed my mind for me.
It was true luck, not intelligent decision-making. Elly was just two; we had entered the six-month period of watching and waiting to see if she would catch up with normal children. We were anxious, but not yet sick at heart. It was summer, and I read in the paper that a community college would open in a city twenty miles from our small town, to be the first in a projected network of two-year colleges which would bring higher education in our state within reach of every student who could use it. In all the thinking I had done about returning to teaching the stumbling block had been how and where. My husband’s all-male college would not employ me even if I were qualified, which I was not. I had no teacher’s certificate, so I could not teach in the public schools. There was a private school near by; now and then they needed a teacher of elementary Latin. I was ready to teach grammar to thirteen-year-olds (I was ready to do almost anything). But as I read of the new college I realized how glad I would be not to have to. My teaching experience, such as it had been, had not been with privileged younger adolescents in a sheltered school, but with freshmen in a teacher’s college and a state university. They had ranged in age from eighteen to twenty-seven, for I had been privileged to teach among the great wave of veterans who flooded the colleges after World War II, and in my first class there had been only two students who were younger than I. Such a background, I thought, might be usable in the new college. I had been twelve years at home, my time spent largely in the company of young children and of other mothers absorbed in their care. I knew these years had scarcely added to my professional adequacy or my ability to function outside my home. A place like this, however, would perhaps not find it easy to recruit teachers. I could drive over for an interview and still not risk much. I would merely fill out an application and get my name in their files. I could come to terms with my hesitations gradually. It was already the middle of August; the college was to open in September. They couldn’t still be hiring faculty at this date. Even if they took me, I could hardly begin teaching before next year.
But I walked right off the street into a job.
Had I waited that extra year I might not have taken it. I would have known then how far Elly was from normality and how much she needed me and I might not yet have known howimportant it was for us all that I too should have some place of refuge and refreshment. I might have thought out the wrong decision instead of falling into the right one. I was indeed lucky. My new job took me away from home only for a few hours three times a week, but it was so hard, so various, so demanding and absorbing that for that time at least it kept my mind from trouble. I do not think anything else could have. The job held me together. It does so still. Though I shall have little to say about it, it should be thought of as a major element in this story.
It meant, of course, that I must get part-time help with Elly.
I had no access to skilled professionals; my houseworker had known Elly from birth and she took over while I was away. My salary just covered hers. Elly required, after all, very little. She was gently and warmly cared for while I was away; her father made a point of coming home for lunch to make sure that all was well. Her quiet life was even quieter with me gone. It occurred to me that she might suffer from the lack of stimulation. But I also thought it possible that she could use these periods of lying fallow — a comforting rationalization which I now think may very well have been true. In any case we thought it good that she be in regular, comfortable contact with someone besides me.
So began the series of mother’s-helpers who helped Elly, helped me, and helped us all. There was no rapid turnover. We did not often make use of other sitters; sitters who were not disconcerted by Elly were not easy to find. I had the same houseworker for two years, and then a series of girls who lived with us. I chose them as carefully as I could, for they were to be not only helpers but temporary sisters and daughters. They must be flexible and intelligent. Fitting into a new family is not easy, even if your job is not the all-demanding one of loving and teaching an autistic child. But a sensitive and enthusiastic young girl can bring a great deal to that job — far more, on occasion, than an emotionally exhausted mother. Our first new daughter came to live with us when Elly was four, and she has proved no temporary acquisition. Four years later she is our daughter still and Elly’s best-loved friend. A complete story would describe her devotion and the techniques she and her successors developed, along with mine. But I suspect that she will write her own book one day. Until then I can only pay her, and those who came after her, this brief tribute. They gave with open hand to Elly and to our family all that was in them to give.
Elly benefited immeasurably from the variety they brought into her constricted and empty world. The quilt and the closet and the quiet games with me gave Elly much that she needed, and for a time perhaps all that she could take. But they could not be enough. The size of our family was our good luck too. She needed — and as she grew better she began to be able to use-the varied eventfulness a big family provided. The door would open and the children would come home from school with a tickle for Elly, or new books and balls that she could play with. In the summer they would run on the lawn with their friends, six or more of them, and Elly, though in no real contact with them, would run up and down in the same direction. Each individual in the household treated her a little differently. I was good at the passive plugging, the long pull. Her father gave something quite different; his flair was for jokes and excitement, the fertile and unexpected, for games I would never have thought of or would not risk trying. As Elly improved she could use the occasional practice in coping with the spontaneous and unlooked for, the occasional departure from routine which, if all else remained secure and orderly, even she could begin to enjoy. The young mother’s-helpers did things we didn’t. As Elly passed four she went with them to movies and parties and hamburger joints and was introduced to young men with beards and guitars. (Some of the young men recognized in Elly the classic cop-out. They said they wished they could be like her, and my heart constricted.) The differences in treatment were good for Elly, now she was bigger. It was still true that in most things we adapted ourselves to Elly, but Elly in a number of things was learning to adapt to us. She accepted that though Mother does it this way, with Jill it might be otherwise. I had to peel Elly’s apples; Jill did not. Rosemary asked her to put on her own pants and she did. She accepted these variations as she would not have accepted variations in my behaviour; even autistic children at length appreciate that different people do different things.
The socialist motto held good in our little collective; from each according to his ability. I was fortunate indeed in my family and in the job which had forced me to make my family bigger. We were a turbulent group when you got us all at home at once; sometimes I grew tired with the complications of our interrelationships. But we impinged upon Elly’s simplicity with what she needed as much as she needed retreat and quiet communion — with stimulation, random elements, and the varied shapes of love.
The helper-sisters took some of the burden off the children, as they were meant to. I wanted the children to help with Elly, but while they were still children themselves I did not want the help to be felt as work. The best thing they could do for Elly, as she entered the world by slow degrees, was to be children with her, to play naturally and with enjoyment the games that came to me, at forty, with such difficulty and awkwardness. They carried her about, dressed her in clothes from the dress-up chest, rode her in the wagon, chased her on the grass. I tried to ask of them only such contributions as they could enjoy making. If they were to accept Elly, I must be careful that the necessity of ‘taking care of her’ did not continually pull them away from things they’d rather be doing. And I tried everything I could think of to help them come to terms with the uncertainties and mysteries of her condition. I pointed out each extraordinary accomplishment which leavened the general blankness, and soon the children began to notice them themselves. It was her brother who saw her paint the letter E; her sister who, eating Cheerios as Elly fed them to her one at a time, realized from the little grunt she made for each that she was counting. I used any ploy that came to hand. Elly brought sweets into our previously cavity-conscious household; I made sure that the children knew to whom they owed their cookies and candy. I even stooped to making use of intellectual snobbery, a commodity which with us is usually in long supply. After we were given the term ‘infantile autism’, we were careful to let the children know that Elly wasn’t an ordinary retarded child (as if any child were ‘ordinary’) but was suffering from a rare and interesting syndrome that had only recently been discovered. They deserved any satisfaction they could squeeze from that thought.
Another approach we used was, characteristically, verbal. We continued to refer to Elly as ‘the baby’ or by babyish pet names long after the time for it was past. It helped us all if we could find ways of forgetting that this baby was three now, and four, and five, and six. The words helped keep our expectations babyish; they hazed over the discrepancy, more evident each month for all her progress, between what she was and what she should be. Elly herself helped out by keeping her fairy charm. It would have been harder if she hadn’t stayed small and delicate and easy to sweep into the air. But even as she grew more responsive her chuckles and smiles, the quality of her enjoyment, had the transparency of a young baby’s, not the complexity of a child’s.
Of course as she grew more responsive the children’s task grew easier. ‘Elly hugged me this afternoon.’ ‘Elly fed me Cheerios and she was counting!’ They could take real pleasure in her as she began to tease and chuckle and look straight into their faces. They could take real pride in the knowledge that they had a share in her progress.
Because there could be no help for Elly in a home heavy with anxiety or hushed with the gravity of her condition. The only home that could do her any good was the cheerful, natural place we had lived in before she came. Of all the necessities of Elly’s condition, we came to feel that the most imperious was the necessity of gaiety.
They call it play therapy, after all, and play must be a gay thing. It won’t work if you do it grimly, gritting your teeth and letting yourself and everyone around you know that you are making an effort of will. We tried to act as if our lengthening baby were a normal child between one and two years old, and to enjoy her as if our pretence were true. We sang all the old baby songs, and invented new rhymes about how silly she was. They couldn’t hurt Elly, and they comforted us. For Elly could not be helped with tears or long faces or self-sacrificing martyrdom. Knowing that children soak up their parents’ attitudes, we schooled ourselves as best we could never to treat what had hit us as a tragedy or a visitation, so that the children would not feel it so. To regard our common task not as a burden but as a privilege was wishful thinking at first, but it helped it become one. It worked for us as
well as for the children. The front we kept up for them sustained us too, until the assumed attitude became (almost) the real.
Almost. I will fool no one by making it sound too easy. We kept our act up well with the children, but now and then, alone with Elly, it did not work so well. One was not always gay then. But curiously, because Elly was what she was, it did not matter much. Certainly it was important to be positive and cheerful when one was in contact with Elly. But most of the time one was not in contact; that was the whole point. The sensitivity to mood a normal child is said to exhibit was simply not there. So when she was looking beyond one or absorbed in her chain one could slump into passivity — stare into space oneself, weep if one needed to, even, occasionally, cry out. She would not take note — which might or might not make one feel better.
And we need not pretend that for the children either we succeeded in making every rough place smooth. I remember one awful week when Elly’s routine had been uncertain and disrupted. She was anxious and fretful and we could not calm her. We were in a strange house, cooped up together by bad weather; everyone was on edge. One of the children cried out, with tearing intensity, ‘We ought to send her away! She ought to be in an institution!’ The words came from the gentlest of the three — the one who never seemed to ask for anything for herself.
The Siege Page 12
