following on our early work with picture communication, Jessy had been making picture books for years — rapid scrawls, uncolored, reflecting TV cartoons, children’s stories, and the rituals of her own daily life. This, however, was not a picture book. It contained neither drawings nor sequential narrative. Rather, it was a celebration of the trans-formations of a word.
The book was a thing of beauty, a theme and variations, four words in three colors: SING, SANG, SUNG, and SONG (see page 63). It was also a finely organized system. It was not, however, as remote from daily life as it appeared. Jessy had an additional source of inspiration — a bag of cookies. How she must have scrutinized it, alone in her room, to note the possibilities of its three shades of coral, its corresponding greens, its contrasting white! Never mind crayons; here, in this bag, were her materials. Patiently she snipped the colors into bits, 208 in all. Each word had its own page, the three-inch letters formed of the snips, SING and SANG in coral, a different shade for each letter, SUNG and SONG in green to correspond. Except for the four final G’s; for these she had reserved the white snips, backing them with coral and green cutouts so they would show up on the white pages. Nor had she forgotten the cookies; they were part of the pleasure. Neatly she cut out their labels, Assorted, Cashew, Almond Crescent, Chocolate Chip; these too became part of the ensemble. Still she was not done. Logic propelled her forward; to the fifth page she taped swatches of her base colors; to the sixth, finely balanced collages in all six shades of coral and green. The seventh page she had reserved for a larger, climactic collage in — what else? — white on white.
The whole was strangely modern, even postmodern, except that Jessy had no idea of what such terms might mean. When I asked her, on a hunch, «What is the name of that art?» she didn’t say «Collage», as I thought she might. Her answer was both specific and accurate: «Those are the cookie art».
I can describe the cookie art, as I can describe much else that we did together or that Jessy later told me about. But the system of systems, the supersystem that in those days eclipsed every other, reflected and conditioned the whole of her emotional experience, encompassed everything she most cared about — that is not mine to describe. I learned about it second-hand. It is time to pay tribute, however inadequately, to the many others who shared devotedly, year after year, the enterprise of helping Jessy grow. I long ago lost count of them; besides the members of her own family there have been more than fifty. It wasn’t I who taught her to tie her shoes. It wasn’t I who taught her to ride a bicycle, to knit, to weave, to draw. And it wasn’t I who worked out the organizing principles of Jessy’s supreme, her most complex, creation. An eighteen-year-old mathematics student at Williams College figured it out, helped in the write-up by Jessy’s father, and it is right that work I did not and could not do should be told in their voices. So I quote, and at length, from David Park and Philip Youderian’s article «Light and Number: Ordering Principles in the World of an Autistic Child». Imagine, then, Jessy as she was at thirteen:
[Jessy] listens to hard rock with an expression of the purest joy, rocking in her rocking chair, putting her hands over her ears when it is too much to bear, for this is the music of o clouds and 4 doors… No clouds at all, the sky the radiant image of a pleasure so intense that to bring it down to a really bearable level would, she shows us, require 4 closed doors between her and the phonograph. It is, she explains, «too good», but she can bear it for a while. The music changes; the rapture abates by one degree: 1 cloud, 3 doors. The classics, most of them, rate 2 clouds and 2 doors; andante espressivo brings protests, 3 clouds and 1 door; and worst of all is a spoken record, 4 and o. The sum of clouds and doors is always 4, and. even the sun loses some of its rays when the music is not of the best.
[Jessy] always watches the phases of the moon and knows where it is in its cycle. On the nights following a full moon, it rises outside [her] window and stays for several hours partly visible behind a large tree. Behind [her] door there is intense excitement, the sound of running feet and little cries of joy. [Jessy] is looking at it — she will not say its name but refers to «something behind the tree» — running from window to window to see the light travel behind the branches and the shadows creep across the grass. The shadow cast by a house standing in the light of the full moon is the most exciting and beautiful sight in the world, and in these long evenings everything depends on there being no clouds to spoil the pleasure. If the moon is obscured, [Jessy] lies in bed and cries her tearless autistic cry. The moon is the number 7, and so is the sun, and so, apparently, is a cloudless sky.
… When [Jessy] sets the table for dinner, she puts a tall glass by her plate. It is green, her preferred color, and it is divided into 8 equal levels by decorative ridges. Into this she pours her juice. It too is green. On most days she will fill the glass exactly to the sixth or seventh level. Sometimes it will be filled to the top; occasionally it will be lower. Ordinarily, the exact level is determined by the type of day with respect to weather and the phase of the moon. «All different kind of days», depending on sun and moon and weather, are the heart of her system.
The system contains 29 kinds of days… The two most important factors that govern the category of day are the position of the sun in the sky and the presence or absence of clouds…. [A day with zero clouds is what Jessy calls dayhigh (in summer when the sun is high) or day- nothing (in fall, winter, and spring). These] are the best of all, celebrated by a full glass of juice. The level of juice is twice the number of doors, down to the disastrous day- bump, when [Jessy] has been a bad girl.
[Jessy’s] mood depends on the sky. During dayhigh, and even more during daynothing, she is cheerful, joking, and cooperative. Clouds, especially if they come to spoil daynothing, bring despondency., and clouds covering a full moon are the worst of all.
Most day things [Jessy’s word] have numbers, in which the digits 1, 3, and 7 predominate. Most of the numbers are primes: 7 is good, 3 is bad, but almost always 3 is associated with 7. The numbers 73 and 137 are. magic, and the concept of days in general belongs to their product 73 X 137 = 10001.[21]
And so on, for ten pages, two tables of correlated phenomena, and a page and a half of intricate calculations. The splendors of the system defy summary; even the investigators didn’t understand them all. Those who share a fascination with numbers can explore them further in what they wrote.
But whether or not we could follow the numbers, we all had to live with the system. It was a rich and inclusive we. No one person, or family, could provide all that Jessy needed to grow. There was always someone else working with her in those days. Most of these Jessy-friends lived with us, some for a summer, some for a year or more, Jessy’s therapists, teachers, and good companions. They were college students, most of them, though two of the best were still in high school. None had any training in special education or developmental psychology, but I claim for them the word «therapist» without hesitation. They worked with Jessy, played with her, sang with her, joked with her, comforted her, understood her secret words, interpreted her to strangers, devotedly taught her whatever they could. Endlessly inventive, endlessly generous, without them hers would be a different and sadder story.
Some, like the young mathematician, recorded their observations. Most did not. But one, it seemed, kept a journal, and after more than twenty-five years, knowing I was again writing about Jessy, she sent it to me. Its entries remind me of what I had gladly forgotten; they bring back how very hard it was, for Jessy and for the inclusive us, in the days when the system ruled. Fran came to us when Phil had moved on. It is her turn to speak.[22]
Pure blue sky. While walking the long hill, a little cloud appeared and covered the sun briefly — oh, what sadness and anger — mumble mumble, looking down at the ground, dragging the feet, stopping, answering no more questions about school. «What is the matter, Jessy?» «The cloud over the sun». I told her, after the cloud was no longer over the sun and was now just in the sky, that she only needed to be a tiny bit sad, because the cloud was small and the blue sky was big.
No help, mumble mumble. Finally the cloud went behind the mountain and trees. «Jessy, the cloud has gone away». Jessy was happy again immediately.
The cloud, it turned out, was «full of numbers», multiples and powers of 37 and 73, with two bad 3’s. Jessy drew it in a picture, with herself and Fran, when the cloud was gone and it was all over. But the weather was not
