Yet at the same time we were determined not to abandon Elly in the isolation she found so congenial. To treat so marginal a child as retarded would itself ensure that she would become so; if she were in fact retarded it would make her worse. Once I had been glad of her self-sufficiency; now I must fight it. She must be approached, played with, taken places, drawn into the family. She had liked being alone, she had spent hours in her crib, sleeping, bouncing, laughing, rocking, rocking, rocking. All that must now be at an end. little as she appeared to want our company, she would have it. She might be content with the rise and fall of a chain; I must find better toys and try to lead her through them to more complex experiences and skills.
It would have to begin with movement and the sense of touch. Compared to touch, hearing and sight are indirect, remote, far less central to the living organism. People can exist without sight or in total deafness. They can be so preoccupied that they neither see nor hear the world around them. Touch them, however, and they will come to themselves. Touch is the most directly apprehended of the senses. The body’s response to things that touch it ceases only with death.
Through sound I could achieve no contact with Elly. Her sense of sight was hardly more promising — she looked at me sometimes, more often than at anyone else, but except in exceptionally favourable situations, as when I greeted her in the morning, she ignored me too.
Unless I came very close. When I touched her, she noticed that. And although she did not seem to hear or see, her small legs and arms and fingers moved. She could inhibit her senses but she could not entirely deny she had a body.
It was in her motion, in fact, that the discrepancy between what she did and what she gave flashes of being able to do first showed. I remember a day when a friend brought her toddler, a little older than Elly, to visit. Johnny had been walking for months. He had rushed into it, as many babies do, before he was physically ready, he had wanted to so much. He had stumbled fallen, but he had walked. We had both laughed when, able to walk but not yet to sit down, he had collapsed from a standing position on to his bottom with a thump. Elly could stand up too. She too sat down, but it was no ungainly flop. As we watched, she lowered herself, legs gradually bending through a squat, into a sitting position, in an exhibition of controlled grace unusual in any child of that age. My friend exclaimed what we both thought: ‘Why Elly, you fraud!’ This the child who couldn’t walk? Obviously she could walk. She would walk as soon as she wanted to put one foot in front of the other. Yet it was months before she did walk.
It was the same with using her hands. She had begun to feed herself with her fingers at about fifteen months, but she did not use a spoon We had done the usual tricks, we had kept a small spoon available, we had provided tempting foods that required it, but Elly had ignored them. One day she had finished her meal and been lifted down out of her high chair, while the family continued eating. Suddenly Elly, hardly big enough to reach the table, grabbed a large, awkward spoon and conveyed into her mouth a large dollop of my dessert. It happened so fast we barely saw it. Then she was gone. We tried her again next day. Her hand went limp. Not only could this child not feed herself, she couldn’t even hold a utensil.
There was, of course, no point in talking to her. A child who doesn’t respond to ‘Elly, here’s a cookie,’ will hardly understand If you don’t pick up that spoon you won’t get any ice cream Yet even pigeons can be shown that rewards are conditional upon performance; the same methods that teach rats to run mazes might have been used to get Elly to hold a spoon.
Today children like her are learning, by means of the behaviour modification techniques developed by psychologists like Ivar Lovaas and Frank Hewett at the University of California at Los Angeles, not only to feed themselves, but to respond to people, even to speak, as the desired behaviour is analysed into stages and every centimetre of progress rewarded to encourage the next small step towards the goal. Today these techniques are taught to parents. But when Elly was two experiments with reinforcement therapy had hardly begun. She was seven before I even heard of them.
It did not take long to learn that to put Elly into situations of extreme pressure was not only lacerating but useless. I have mentioned that she learned to crawl upstairs at seventeen months, and then forgot. After many months — it was after she came home from the first trip to the hospital — she learned again, and with some help she learned also to crawl down. But she did not learn as other children do, a skill to be extended, applied in new situations with a feeling of mastery and pleasure. She could crawl up and down our main staircase. Not our third-floor stairs, however, and not any staircase in a neighbour’s house. One day — she was just past two — we carried her halfway up a friend’s stairs and marooned her. I stayed at the bottom, smiling encouragement. She understood the situation at once, she who understood so little. She began to cry, with a kind of crying very rare for her, for though she might fret, or cry loudly if hurt, she did not cry much or long. This was a hard crying to listen to — lost, furious, totally committed — a crying that came up from the inside depths we never reached. We let it go on for twenty minutes. Then we carried her down. What would she have learned if we had left her there? Nothing, I think, except that we were willing to treat her with inconceivable violence. We could not have left her there. I think, I really think she was ready to stay there till she died.
But she did want to come down enough to cry about it. That itself was rare. Her detachment usually provided her with better armour. In almost all situations, the weakness of her desires was there working for her, against us. The rat wants the flavoured pellet, the pigeon wants the corn. What did Elly want enough to meet any conditions for getting it? Not a cookie, not a toy, not a ride in the car. A baby who like a Zen adept acquires the knack of inhibiting its desires approaches something akin to the Zen satori. Serene, in perfect vegetative equilibrium, it can be content to do nothing at all. When a creature is without desires the outside world has no lever by which to tempt it into motion.
So again and again it was as if she could but wouldn’t. That, of course, was the source of the doctors’ uncertainty. Those vigorous legs, those exquisitely controlled fingers sifting the links of her chain became weak and useless when confronted with any imposed task. And what was an imposed task? To climb, to reach, to walk — all the activities other children spontaneously throw themselves into in their delighted desire to learn and grow. Elly seemed strong. But between her and any normal development lay this terrible weakness, a weakness that was no less real because it seemed to lie not in the muscles but in the will.
Who knows what is willed and what is not? Who boasts he can read minds — least of all a wordless baby’s? In humility I can only say that Elly’s weakness seemed as if it was willed, in full realization of the difficulty of believing it. It is a little too much to swallow — to accept that an infant can assess its situation as we have all seen frightened grownups do — and decide that anything is preferable, even total withdrawal, to the risks of activity and growth. It is as if... As if. Again and again we used this formulation, as we searched out explanations of our child s strange contradictions. As if — yet we could not and cannot be sure. We cannot help interpreting. The words as if must function to remind us that we can be sure of no interpretations.
It was as if, then, Elly had realized early, earlier than it seems possible for any child to realize, that if she remained motionless, sitting on a rug in the middle on the floor, nothing could occur to threaten her, that if she attempted to do nothing, she need never fail. She did not in fact sit motionless — she was alive and healthy, her body functioned and impelled her to a fuller interaction with the world than that — but it seemed to us that this was the model of her condition. Her body was as strong as it was beautiful, but in comparison to a normal child she used it hardly at all. The first strategies of the besiegers must deal with this least abstract, most accessible of Elly’s weaknesses. It was useless to assault ears that would not hear us and eyes that
would not see. The first approach — the only way in — was to try to return to her her primary birthright, the use of her body.
How elevated that sounds, how elaborate and complex! Yet it is a fancy description of something most simple. There can be nothing esoteric about a mother working with a baby, trying tactfully, delicately, to encourage it to do new things. This is what all mothers learn. Everything I found to do in this abnormal, extreme situation was only an extension and intensification of things I had done with my normal babies. Such tact as I had I had learned with them. So it may be with a feeling of anticlimax that the reader moves into a description of what was actually done. It seems very simple and it was. There wasn’t anything else for it to be. Even the most accomplished professional therapists of children, if we view them operationally, considering what they do, do something quite simple. They discover the right games to play.
Consider one of the first skills we managed to convey to her — drinking from a cup. She sat with us at the table, she fed herself, but although her cup was there before her, small and comfortably available, she never picked it up. When it was time to drink I held it up for her, as I had done ever since she was a small baby. If I put it in contact with her fingers they refused even to close around it, let alone expend the force necessary to lift it to her mouth. Months went by — she was twenty months old, two years, and still incapable of grasping the cup. Incapable at table. In her bath she had cups which she used with finesse, not only picking them up but deftly pouring water from one into the other. More months pass. It is late in November; Elly, born in July, is nearly two and a half.
One day at dinner Elly surprises us. Rapidly, decisively, she picks up a small glass of milk, pours it accurately into her apple sauce. There is a precedent; the previous day I had poured milk into her apple sauce for the first time, but that hardly explains it. Though man is an imitative animal, Elly does not imitate. Nevertheless, some resistance seems to be giving here; the very next day she picks up one of her bath cups and drinks from it. The day after, she picks up her cereal bowl, quickly drinks some of the milk, and pours the rest on the table.
There was so little at any given time going on with Elly that it took no special acumen to note a new readiness, which could perhaps be made use of. Experience had taught me that while other babies might be encouraged if congratulated and made a fuss over, Elly would react in just the opposite way, with retreat. It worked badly when we called attention to anything Elly was doing — she always stopped doing it. As if she didn’t want to be committed to any forward progress — as if she feared that any concession she made would at once be taken advantage of. I knew the new skill was best ignored, not pressed.
So I got a very tiny cup, much smaller than her small child’s mug — so small, so inconspicuous that it would be hard indeed to regard it as a challenge. I filled it with Elly’s favourite juice. But half full only. With her uncanny accuracy she wasn’t likely to spill even a full glass, but I wanted to eliminate the slightest threat of failure. I put the cup, not on the dinner table where her ability, if displayed, would be noted and seem formally to commit her, but on a low chair. It was not yet serving time and Elly was moving about the kitchen as usual. She spotted the little cup, and when she did pick it up and drink it none of us appeared to notice. Indeed it was easy not to, she did it so fast Above all, we did not at once set cup and juice at her place at table; we fed her her liquids exactly as before. Not for several days did I move the tiny cup from chair to table, and not for several more did the juice begin to appear in successively larger vessels. One must respect other people’s concessions, and recognize that they may have cost more than may appear. Even a tiny child has face to lose, and we guessed that Elly had much invested in her disabilities, although we did not, still do not, know what it was, and is.
It was the same with introducing her to new toys — and to extend Elly’s range of play seemed even more important than teaching her convenient household skills. My diary records Elly’s play activities at the time she returned from the hospital:
She is still playing primarily with rattles, which she likes to use as a tool for patting picture books. In fact exercising — joggling or rocking in chair or crib — chaining, and patting are all she does. She can be left alone on a bed for hours with no toys; she will not fall off or get down. Peg-in-hole toys or ring on peg she regards only as something to dismantle, the parts of which can then be used to pat or knock other surfaces.
I had tried to induce her to put rings on a stick before she went to the hospital. Had it been too soon, or had I merely not seen how it should be done? When she came back I thought harder. I got down on the floor, close beside Elly. I did not push the toy into her radius of attention. I began to play with it myself. In slow motion I put on several of the bigger, harder rings. Then I put on a smaller ring, but only halfway. Askew, yet clearly on, even Elly couldn’t consider it too difficult a challenge, and what I was doing was something more interesting than what she was doing, which was, as usual, nothing. I retreated a hand’s breadth and looked away. When I looked back, the ring was on the stick.
More of this, and then I could risk extending it. Perhaps Elly was ready for me actually to give her the smallest, easiest ring. I didn’t put it into her hand — Elly never accepted objects as directly as that. Instead I laid it on the floor beside her hand. And she picked it up and she put it on the stick.
The next day she put all the rings on the stick, easily, neatly, as if she had always been able to. Soon — I can’t remember when — she learned of herself to arrange them according to size, one of the earliest indications of something we were to become more and more familiar with, the extraordinary sense of order of the autistic child — the sense, perhaps, which made it necessary for her to adjust that first ring, left, by a lucky intuition, halfway on.
How hard it is to keep this account from taking on the tone of a success story. For what had I accomplished? In addition to book-patting, chaining, and rocking, Elly could now put rings on a stick. As if in relief at the introduction of some variety into her circumscribed activities, she did put rings on a stick — over and over and over. With each of the few activities I was able to add it was the same — received with delight at first, it was repeated and repeated and finally abandoned as if — as if — in boredom. She would not extend it into meaningful play, and I could find no way of helping her. Blocks were to tower, then to line up parallel, but never to build a house. Indeed at that time I had no reason to think that Elly knew what a house was, that she knew what anything was except perhaps the food she ate and the clothes she wore. It is necessary to emphasize that this account is not to be read like an account of a normal child in which the description of one activity does duty for a whole class. In describing Elly at two I do not have to select. What I tell is all there is to be told.
Yet these tiny successes accomplished something. Narrow as Elly’s spectrum remained, it was less narrow than before. Each miniscule, apparently empty victory nourished something in Elly and in us. In Elly, perhaps some frail sense of adequacy, in us the necessary hope that our daughter had some mind hidden away inside her speechless incomprehension. Not too much hope — foolish hope was something against which we had to defend ourselves. Only enough to mount the next assault.
Elly grows older; she is nearing three. We have taken her on a picnic. Together we sit on a rock promontory beside a brook. I have carried her over the rough ground and the rocks; though she now walks gracefully and well, the slightest shift of a stone beneath her feet is enough to render her motionless. I drop a stone in the pool beside us — a splash, a satisfying plop, a new experience for a child almost without experience. Elly should be able to do this, I figure. The pool is right beside us. She need hardly stretch out her hand. I give her a stone. She has progressed in these months; I do not put it directly into her hand, but she takes it from my outstretched palm. She drops it in (that she would throw it in, with a three-year-old’s abandon, is of course
inconceivable). I hand her another, another. She likes this game. The stones are in a small pile close beside us. I move slightly away. With a touch, I call her attention to the pile. She wants another stone, another plop. Will she reach out her hand the six inches it must travel to pick up another stone for herself?
No, she won’t. Not today. I do not press; I know the answer is final. My immobility is a mirror of hers. I have learned to wait.
The readiness expands, though far more slowly than for the slowest of normal children. Each new skill makes the next one easier, though not easy. And that is why I keep on — not so much because it makes life less burdensome if my child can feed herself and make use of rudimentary motor skills, although of course everything she can do for herself is one more thing I do not have to do. It is because each new skill must make her feel a little different. One works on the assumption — it must be, in fact, a faith — that the tiniest success must leave a trace, must move the child, however imperceptibly, towards the experience of adequacy. So, as one thinks of them, and that is very slowly, one sets up the preconditions for new successes, even if these are to be no more impressive than picking up a stone and dropping it into the water. Each new accomplishment is not only a bolstering of confidence, it is an incursion into that guarded emptiness, an enrichment of that terrible simplicity. And though Elly resists each foray, we suspect (for a long time it is no more than a suspicion) that she is glad of them. She can take no initiative towards growth, yet she is no frozen adult but a living child. We must believe she will be glad to grow.
The Siege Page 5
