Synopsis
Book by Bock Kenneth Stauth Cameron
Extrait
CHAPTER ONE: THE CHILDREN
New Haven, Connecticut
It was the most ordinary of family moments. the baby was just starting to talk, and Mom wanted a video of it.
Lynne Avram handed the video camera to her husband, and he started shooting the playful interactions between Lynne and the baby—chubby little Paul, with his bright eyes beaming–focusing almost entirely on his son, instead of his wife, as new fathers are prone to do. To him, and to Lynne, too, the baby—and every ordinary thing the baby did—was absolutely unprecedented. It was as if no child had ever before taken so majestic a first step, or burped so remarkably.
Dad narrated as he filmed. “This is the day before Paul’s very first birthday,” he said, getting a close-up of gleeful Paul, tottering around barefoot in his red-striped shirt. “Can you say hi, Paul?”
“Ha-ee! Ha-ee!” Paul responded, waving at the camera.
“Hi, sweetie!” said Lynne. “Hi-hi!”
Paul grinned at Lynne, and his face was lit with love, easy to read, in that striking nonverbal way that toddlers have of telling the world how they feel.
“Ha-ee, da-duh!” said Paul.
“Can you say, ‘Hi mama?’ ” Lynne asked.
Paul gazed happily at his mother, and brushed at his nose. His nose was a little runny. It had been runny for several days. Lately, he was picking up every cold that came around.
“Pauly,” said Lynne, “can you say ma-ma? Ma-ma?”
“Da-duh!”
“You think this is pretty funny, huh?” Lynne said, laughing.
“Uh-uh!” said Paul, shaking his head emphatically. “Uh-uh!”
What a unique child! What an extraordinary family moment!
Truth be told, of course, it was all quite ordinary.
In the years to come, though, Lynne and her husband would watch this video many times.
It was a video of one of their last ordinary family moments.
Paul’s runny nose lingered for several days. Then he started to get better, but caught something else. Paul seemed to have a bad case of the common malady that parents call the day-care flu—catching every germ in town—even though Paul stayed at home with Lynne.
Paul, in fact, still had his cold on the day he was due for his next- to-last round of immunizations, at fourteen months. He needed a measles-mumps-rubella shot, and a booster to protect him against a form of meningitis.
Just before the appointment, Lynne called Paul’s doctor and asked if it was safe to give vaccines to kids when they were sick. The doctor told her not to worry—it happened all the time. If parents waited for perfect health in their toddlers, he said, the kids would never get all their shots. These days, he said, there were more shots than ever, and they were all important. Whole epidemics had been wiped out!
But Lynne still felt uneasy. Jittery. Couldn’t shake it. She was a registered nurse at a prominent hospital near the Yale University campus, and it seemed to her that it went against medical common sense to provoke a powerful immune response in a child whose immune system was already battered by illness. But she told herself that her fear was just garden-variety parental paranoia. After all, she worked with some of the finest physicians in America, and she had a flint- hard faith in their expertise. As a nurse in one of the world’s best coronary intensive care units, she regularly saw doctors snatch patients’ lives back from the shadow of death. They worked miracles.
So Paul got his shots, and everything was back to normal. Lynne and Paul went home and played. Later, Lynne made dinner for her husband, Wesley—who was a Communications professor at Yale Divinity School— even though she was exhausted. Getting simple chores done was tough with a baby in the house. But she knew it wouldn’t last. Kids grow up. Easier times were ahead.
Over the next few days, though, Paul’s nose and eyes grew disturbingly red, against his now ghostly skin. Dark circles began to droop under his inflamed eyes. Patches of scaly skin grew on his soft face. He no longer wanted to play. He was always tired and congested, irritable—not himself. Lynne told herself that she would have to wait a little longer for the easier days.
One evening, a couple of weeks after the immunizations, while waiting for Paul’s latest bout with a cold-bug to end, Lynne took him to the window and started to play a familiar game, in which she would point at something and say, “I see a tree”—prompting Paul to repeat “tree.”
“I see grass,” she said. But Paul didn’t seem interested.
“I see the sky.” No response.
“I see car-car. Car-car!” Nothing.
“Pauly?”
Paul was changing. Lynne didn’t want to believe it, but it was undeniable. The changes, frighteningly, did not seem to be just predictable responses to pervasive symptoms of colds and flu. Paul’s whole personality was changing. More precisely, it was just evaporating. His trademark mannerisms, his unique facial expressions, his words, his eye contact, his hugs and kisses, his lopsided grin: gone. His playfulness was gone. His child’s joy was gone. Replaced by nothing.
Paul couldn’t sleep through the night. He woke up screaming. His digestion and elimination suddenly soured, as if his belly were now filled with a wet, noxious mix of food and poison. It soaked his diapers and burned little lesions into his bottom, no matter how often Lynne changed him. His new nickname was Poopy Pauly.
He started to suffer from almost constant ear infections. The pain and the crying never seemed to let up. Wesley and Lynne took the relatively drastic step of having plastic tubes inserted into Paul’s ears to drain the congestion, but the infections just shifted to other areas, including his throat, lungs, and buttocks.
Instead of playing with his toys, Poopy Pauly started rambling around the house in a strange state of stupor that was punctuated by sudden meltdowns. He ignored everyone. Nothing penetrated—not love, not a raised voice, not constant attention. As Paul stumbled around the house, he would often bruise himself, but he didn’t seem to notice. Lynne could only follow in his wake, cleaning up his messes and keeping him safe.
Sometimes Paul drifted into what seemed to be his own mental purgatory, standing for hours in front of a running faucet on his spindly, weak legs, mesmerized by the water, acting almost as if he were high on drugs. Lynne and Wesley began to alternate on what they called Paul Duty. One would work or do chores while the other was on Paul Duty, then they’d switch, fall into bed, and wait for Paul to wake up screaming. Another month crept by, then another.
Lynne made a video approximately eight weeks after Paul’s immunizations, and it portrayed a child who was vastly different from the child in Paul’s first-birthday video. In the new video, Lynne coaxed Paul to interact, but he just sat mutely on the floor, drooling and wooden, his eyes vacant. At one point in the video, Wesley entered the room and said, “Hi, Paul.” But his voice sounded very different in this video. He spoke to Paul in a sad monotone, as if he expected no reply, the way one might speak to a person in a coma. After that, there weren’t many more videos.
Summer came and went, as Lynne embarked on a pilgrimage to the medical world. But no doctor offered a diagnosis or proposed a treatment. None would even confirm Lynne’s certainty that something dreadful was happening, and that her child should not be trying to eat Christmas tree decorations, or stick metal objects into electric outlets, or run away so often that they had to fence the yard and put locks on all the doors. She was told that kids developed at different paces. She was told that toddlers were a handful. She discovered that the medical world was much different for the patient than it was for the professional.
A year somehow crawled past, with Lynne constantly searching for signs of improvement, but never finding any. Family outings dwindled to trips to just one playground, which had a high enough fence to keep Poopy Pauly, still in diapers, safe.
After another exhausting summer, the holidays came. Theoretically. But there was no way to have a holiday in the Avram home. At Halloween, Paul—almost three now—was completely oblivious to the costumes and candy. Kids would come to the door and he wouldn’t even look up, so Lynne turned off the lights. Thanksgiving dinner, of course, was completely impossible with Paul in the house, and at Christmas Paul just tore open everyone’s packages, with no interest whatsoever in their contents. Normal activities ceased. Bike rides? Not possible. The movies? No way. The mall? Out of the question. Church, where Wesley was the minister? No—Lynne and Paul sat outside on the curb. Play dates? With whom? Paul Duty didn’t consist of play dates.
Ordinary family life was over, practically before it had begun.
Then one night Wesley was channel-surfing and came across a scene of a child staring hypnotically at water running out of a faucet—like Paul! It was a segment on Cable News Network. The moment it was over, Wesley hurried to his computer, dialed-up the relatively new Internet, and typed in A-U-T-I-S-M.
“Lynne. You’ve gotta look at this! I think Paul has autism.”
“Autism?”
Lynne vaguely recalled hearing about autism in nursing school. Back then, in the late 1980s and early 1990s, autism was considered a very rare mental disorder, not nearly common enough to merit much study. Lynne hadn’t heard about it since. None of Paul’s doctors had ever mentioned it.
Lynne sa...
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