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.