What thoughts? asked the specialists.
Their goal was to teach him to comply, she was told.
Anger and surprise took turns inside her. But why was she surprised? It wasn’t like she had been born yesterday; she had met this attitude before, most often in men. ‘You’ve got me all wrong,’ she wanted to say. ‘Me and my son.’ She feared they were making a naive fool of her, one of those deluded women who blindly swears her child can do anything; why couldn’t they see that she was for real? Imperfect, like any mother, she would allow, but always serious. And stubborn. Excuse her if she didn’t bow down at once and truckle to their cold-eyed pessimism.
Family lore said Eve had always been something of a rebel. Her aunts liked to repeat the story of the time long ago when she and her sisters had stayed at Grandma Edwards’. The grandma could be stern, and she and Eve, who must have been nine or ten, hadn’t seen eye to eye. Eve told her sisters, who had just received a scolding, to pick up their things and follow her. Chin held high, she escorted the sisters several blocks to the bus stop, put them and herself on the next bus, and rode home.
So before the specialists were even done saying all that her son would likely never learn to do or be, Eve had determined to prove them wrong. Big time.
✲
I listen to Eve Megargel in Framingham as she gives her keynote and am glad I found her name. I have a fairly good view of her from where I’m sitting. She can’t see me, though, not at all, even were she to scan every audience member at the back; I’m sitting further away still from the stage, five years away in the future, not to mention the little thing of the Atlantic Ocean between us.
Time and space concertinaed. The Internet can be wonderful like that. I close the video and send Eve an email asking whether she’d have some time to answer my questions. I tell her I’d like to write about them: her and her now adult son Billy. I don’t tell her about my writer’s block. A book has been waiting in my head for me to wrap up years of research, assume my ambitions, and commit it to paper. It is a collection of stories, real-life narratives that will explore the neurodiverse experience from many angles, with scenes and themes whose success will depend on my finding, for each story, the right form and face and voice.
After an exchange of messages, Eve and I find dates in our diaries to video-call regularly. Which we do over several months.
I watch home movie footage of Billy at three, six–seven, at ten, as a teen and young adult.
I learn all about electronic augmentative and alternative communication systems.
I feel words quicken and travel inside me, to the tips of my grateful, typing fingers.
The rest is this story.
I haven’t any idea whether Eve knows very much about me, whether she has read any of my books, whether she sees any of Billy’s autism in mine. I’m drawn to his experiences partly because they are so different.
I live by words, make my living from them, but sentences and syntax – as we define these traditionally – do not belong in Billy’s language. His way of thinking and feeling and perceiving bypasses words. This inarticulacy has nothing to do with any lack of intelligence or curiosity or the desire to reach out to others. It has to do with an inner world that is pictorial, musical, and the many meanings he is able to find in shape, colour, motion, tone and rhythm.
Chess players, those with a facility for the game, access their own inner world – the chequered board and its pieces – somewhat like this. Not like a beginner, who loses himself in internal monologues as he contemplates the next moves; his patzer’s prolixity – bishop up a row, take, take, if knight goes there, castle – is more muddling than enlightening.
In bright tensions, lines of pure energy, structures – that is how the grandmaster thinks.
✲
‘They just don’t get it,’ said Eve, one Sunday afternoon when her parents were over for lunch. By ‘they’ she meant some of the staff at Billy’s school. ‘I take Billy’s device in to show the teacher and she’s like, “What’s the point? Look at all those buttons. He won’t know how to use this.” Trust me, he does. Just give him some encouragement. Then she goes, “Perhaps you think he does but anyways we don’t go in much for these gadgets in class.” Well, then, I say, I guess there’s no time like the present to change that. “Mrs Megargel, we hear you.” I’m not sure you do hear me. “We absolutely do.” So I bite my tongue and I say to her, please do as I ask. Let Billy have his device with him in lessons. It’s on her desk. She picks it up like it’s mega heavy and it isn’t heavy at all. “Okay, we’ll give it a try,” she says. “No promises, but we’ll give it a try.” Hallelujah!’
Come what may, the world could be sure of one thing: she would never give up on her son. She did not know the meaning of ‘give up on her son’. He was their ward, hers and Matt’s, would always be; anyone who imagined her beat and dejected couldn’t be more mistaken. He would not be shoved to the margins, his potential left to moulder until it vanished – she would not allow it.
For several years now Eve had been following the advice in Clara Park’s book almost to the letter. She had found a local school with the resources to take children like Billy, the classes small, the teachers and assistants well trained (though even there, she sometimes ran into resistance). The school had started Billy on pictures, a technique involving picture cards; the child learned to give a card to the adult to ask for or say the item shown. The images were bright, rudimentary, the word for each printed underneath. A stick man with a yellow book (‘read’), a beige biscuit with a glass of milk (‘snack’), a big red cross with downcast face (‘no’). Some of the pictures illustrated words taken from American Sign Language. Flattened hands touching fingertips (‘more’), a circular hand sweep around the chest (‘please’). Billy did not use any sign language yet though. For a long time he could not point a finger or imitate.
At the age of five he had his first speech-generating device, a Macaw, positively prehistoric in comparison to later models. It was serviceable but clunky, and not very much to look at.
‘He’ll get the hang of it,’ Eve had told Matt and Ben and herself, though she knew that was anything but certain. She had furnished the Macaw with pictures of her own making, Polaroids of the family and of household items, and colourful cut-outs from magazines. You had to slide the pictures carefully into place over the digital surface. When pressed, each image would set off an audio recording of the corresponding word: it would say ‘mom’ or ‘table’ or ‘car wash’. It was Ben’s voice you heard. He had been more than glad to lend his eight-year-old voice to his little brother.
But it had taken a lot of showing and persuading to get Billy even to touch his Macaw. You’d think the battery had died on him the way he only glanced at it before turning his head to the wall. This is more interesting than the wall, Eve felt like saying. And then, as if he had read her mind, he returned his eyes to the pictures on the device and then gave her a quizzical look.
‘Tell us what you want to do, Billy.’
No answer.
Eve asked and Matt asked and Ben asked. And got nowhere fast. Then they tried withholding something, some toy or candy, he’d usually make a hard throaty noise to request, and showed him – over and over – how to request it on his machine. Showed how easy, how much easier than relying on grunts and groans, it was to transmit his exact need or wish. Look, Billy, like this. Like this, see? But he didn’t, or maybe it seemed to him the device was harder than going without.
Then one day, no special day, they tried again and he looked at the device differently. It was the same Macaw, the same living room. They said the same things, made the same gestures of explanation. Didn’t he want to jump on the trampoline, or to read his books? Choices. Eve had always wanted him to see that the device gave him choices. Jump or read? Now that was a choice. He loved trampolining in the barn, loved his books too – at home as much as in school. He would sit in his chair or on the floor and turn the big, thick pages and look at all the words – he was beginning by now to make them out – and the fantastical illustrations. Their author was one doctor he need never fear – Dr. Seuss.
Billy’s face registered interest, understanding.
Eve said, ‘What do you want, Billy?’
Matt said, ‘What’s up, Billy?’
Billy leaned forward and hit a button. ‘Book,’ Billy said, in Ben’s voice.
‘Way to go, Billy!’
A tremendous thrill entered him then, and his chair became a rodeo bull. It bucked and rocked him back and forth as he threw out his arms and giggled.
‘Here,’ said Eve, and her firm hand tamed the chair. ‘Here are your books.’
And Billy sat still and turned the pages on his knees and smiled. It was as though he had needed all this time to grow into his big brother’s voice.
The technology had been maturing too. Soon he was using a touchscreen capable of expressing not only individual words but also short phrases.
‘Excuse me,’ the device would help a hungry Billy say. His finger would dart from icon to icon.
‘I want.’ ‘Dictionary.’ ‘Food.’ ‘Meat, fish, poultry.’ ‘Hamburger.’
But none of this progress squared with the uncommunicative boy Billy could be in class. Prone to tantrums. No, not tantrums, Eve would remind his teachers. Not tantrums. A breakdown in communication. In any case, no one in the school had ever seen him use his device.
