Shortly after Alex turned one, they traveled to Pennsylvania to see family. The youngest of Lucie’s nephews was Alex’s age; the boys were born just a few weeks apart. The difference between the two was jarring: Alex’s cousin gestured, followed his parents’ gazes, waved, and pointed at things he wanted. He babbled as he played and cried when his parents left the room. Alex did none of those things.
When Alex was sixteen months old, Lucie delivered her second son, William. It was another uncomplicated pregnancy, another uncomplicated birth. She had another beautiful baby boy, an alert little guy with big eyes and a happy disposition. But this time when the doctor who came around to conduct newborn hearing tests offered Lucie the usual pamphlet on resources for children with language delays, she took one.
By that point there was no denying that something was going on with Alex. He showed no interest in his baby brother. He looked at him for a few seconds and then walked away. He was never affectionate with his parents, either. If they tried to hug him, Alex angled his entire body away to avoid contact. When Lucie tried to coax Alex into looking at her, he stared into the distance.
He covered his ears and screamed when he heard music play, bags crinkle, or water run. Lucie and Mike walked on eggshells: they quit listening to music; they only unpacked groceries when Alex was out of earshot; they waited until he was napping to rinse dishes—anything to avoid setting him off.
Though he had always seemed physically adept, Alex began doing an odd, repetitive dance when excited. He walked on his toes and flapped his hands.
He developed a fascination with drawers and doors. If Lucie or Mike left a door open, even the door to the dishwasher, he stared at it, silently, until someone closed it. He was fascinated by the sliding mechanism on which the drawers operated, and he opened and closed them repeatedly.
He had many toys, but he didn’t play with them the way other children did. Often, he lined them up. He plucked small wooden trees off his train layout, positioned them carefully along the edge of the counter, and ran his eyes over them. Once the trees were perfectly aligned, he stood in front of the counter and rocked back and forth, staring at the configuration. He did the same thing with figurines; he did the same thing with cereal boxes.
A few weeks after William was born, Lucie took Alex to a drop-in clinic at First Words, the facility she had read about in her hospital pamphlet, the one that screened young children for speech and language delays. After Lucie filled out the forms with information about Alex, a speech and language pathologist pulled her into a private room. She was certain Lucie had made a mistake; she must have reversed the numerical rating scale. Lucie assured her that she had understood the scale correctly. “Her jaw dropped, and that’s when my heart dropped,” Lucie recalled.
The pathologist issued Alex an urgent referral for an appointment with a developmental pediatrician. Two months later, Alex was diagnosed with autism. He was only eighteen months old—young for such a diagnosis—but it wasn’t even a close call. Alex checked nearly every box.
“We were devastated,” Lucie recalled. “I was trying to be functional because I had a sixteen-month-old and a newborn. I was sleep deprived and trying to cope, but I was mourning the loss of everything I expected of my child. He may never speak; he may never show affection, go to school, make friends, get married, take care of himself, or have a job.”
Getting help for Alex would be no easy task. The waiting list for publicly funded intensive behavioral therapy was roughly a hundred people long. It was a nonstarter: don’t hold your breath, Lucie was advised; don’t count on it.
Lucie was scrappy. She had worked her way through college; afterward, five or six banks refused to lend her money for medical school, but Lucie kept filling out loan applications until she found a taker. She was trained in psychology and medicine, and Mike was an engineer. They could handle this. Lucie and Mike signed Alex up for speech therapy and occupational therapy while they waited for a spot in the behavioral therapy program. In the meantime, Lucie, who is meticulously organized, read everything she could find on autism intervention. She investigated evidence-based therapy, joined autism support groups, participated in workshops, and attended a three-day international autism conference.
She was intent on language. At every opportunity, she looked Alex in the face and enunciated words as clearly as she could, repeating them several times.
She got nowhere.
She worked on gestures. She tried to teach Alex to point to things he wanted, often while holding a colicky baby in her arms. When that didn’t work, she tried following his gaze to see if she could figure out whether he was looking at a particular drink or toy, silently indicating his desires.
She got nowhere.
When Alex had another assessment a few months after his diagnosis, he was still yet to babble, let alone produce his first word. During the appointment, Alex paced the room and stared at the lights on the ceiling. He danced on his toes. He lay down on the floor and watched the wheels on a toy truck roll back and forth. He opened and closed cabinet doors. When someone stopped him from opening the cabinet doors, he cried and banged his head against the wall. His adaptive functioning, a measure meant to reflect a child’s communication, daily living skills, socialization, and motor skills, was at the second percentile, indicating that Alex, who was a few months shy of two, functioned at the level of a ten-month-old.
Lucie threw out her parenting books. Alex wasn’t meeting any of the developmental milestones. He wasn’t even on the scale anymore. The parenting tips the books provided for children Alex’s age didn’t apply. Reading them was just too depressing.
She did, eventually, have one breakthrough. At one of Alex’s speech therapy sessions, Lucie had learned about the Picture Exchange Communication System (PECS). The idea was to put together a collection of pictures that someone who was nonverbal could use to indicate his needs. Lucie created a binder with dozens of pictures of food, milk, and toys and began slowly, painstakingly, introducing Alex to it.
Alex learned to find the right card and lay it on the table when he wanted something. After he mastered that step, Lucie taught him to put the card in her hand instead of on the table. She continued upping the ante until Alex learned to look her in the eyes when he handed her the card and then, finally, to cross the room to give Lucie the card.
It was a success. If Alex was thirsty, at least he could toss Lucie a picture of milk. But it was also demoralizing. It had taken almost a year for Alex to master using the binder. Was this as good as communication would get?
Lucie hired a private behavioral therapist. The therapist came to the family’s home and immediately criticized the PECS binder: There were too many pictures on a page, she scolded. It was too overwhelming for Alex. The therapist’s interactions with Alex were no better. Alex didn’t respond well to her. When Lucie intervened, suggesting a couple of activities Alex enjoyed and mentioning how she thought he might be starting to demonstrate affection, the therapist told her that autistic kids didn’t feel love. Lucie kicked her out of the house.
Despair, long circling, took hold. Lucie felt a slow but building tide of disappointment, then bitterness, then resentment. She was pouring hours and hours of time into trying to help her son, but the rewards of parenthood were elusive. Alex never hugged or kissed her. If she tried to hug or kiss him, he pushed her hand away. He never looked her in the eye or smiled.
When she was working at the hospital, she could sometimes, almost, shut everything out. She enjoyed what she did and felt effective. But when she got in her car at the end of the day, dread mounted. She didn’t want to go home. “I felt hopelessly inadequate and ill equipped to deal with what had happened, and I was resentful deep down inside of Alex for making me feel that way,” Lucie recalled. “Being resentful about your child, it makes you feel very guilty. It makes you feel like a monster.”
Autism bloodied her marriage. She and Mi
ke had always had a great relationship. They’d hit it off immediately when they met years before at a friend’s birthday party and Mike, dressed in a black turtleneck and black-rimmed glasses, asked Lucie’s opinion about the Canadian medical system. They had mutual friends; both loved Halloween; even planning the wedding was a breeze. But autism nearly ripped them apart.
Their finances were blown. They were a two-income household, a doctor and an engineer. They had never expected to pinch pennies, but as their bills mounted, they struggled to make ends meet.
They started couples therapy, and it helped. The therapist reassured them, over and over again, that their relationship was solid. All of the problems they were having, all of the stress, was completely circumstantial. They were big circumstances, but circumstances nonetheless. They could work through it.
When Alex was two, the family caught a break. The Portia Learning Centre, an organization that provides services for autistic children and children with developmental delays, opened a nearby location. Lucie and Mike sprinted through the door.
The therapists at the center began with an intensive assessment of Alex. They emphasized the importance of getting to know him, of studying his particular case. In a moment that Lucie will never forget, the therapist remarked on Alex’s potential: I really see something in him, she said. Though other experts had told Lucie that Alex would never speak meaningfully, his new therapist said the first thing they were going to do was get him to talk.
Lucie told the therapist they had been working on speech for months. She told her how when she handed Alex milk, she would look directly at him and enunciate, as clearly as she could, “milk.” Maybe that’s too intense for him, the therapist suggested. Let’s try something he might find a bit less overwhelming.
They started working with Alex in his home. During the first session, Alex stood in the living room in front of his model train set, slowly, quietly, moving the trains back and forth across the tracks. The therapist positioned herself behind him and watched him play. Slowly, quietly, she began making the same consonant sound over and over again: mm mm mm mm mm mm.
Back and forth, Alex moved the trains. Mm mm mm mm mm mm.
Back and forth. Mm mm mm mm mm mm.
The ninetieth time the woman repeated the sound, Alex chimed in. Mm mm mm mm mm mm.
The therapist switched to a new consonant sound: bb bb bb bb bb bb.
Back and forth, Alex moved the trains. Bb bb bb bb bb bb.
Back and forth. Bb bb bb bb bb bb.
The sixtieth time, Alex chimed in.
The therapist switched to a third consonant sound. This time, Alex chimed in on the fortieth repetition. “It was like, oh, is this all we needed to do?” Lucie remembered. “How hard have I been working on this at home? Why didn’t anyone tell me to do this?”
But it was two steps forward, one step back. Once Alex seemed comfortable with his therapist, they tried switching his sessions to the learning center. Alex made it no farther than the entranceway, where he planted his feet and screamed. He reached for the light switch and began flicking it up and down, turning the lights on and off. The therapist interacted with him for a few sessions in the entranceway. Then she began putting toys and activities that interested him in front of the treatment room door. Eventually, she coaxed him inside.
Two months later, Lucie was feeding Alex lunch in his high chair while William napped. When Alex finished what she had given him, he stared at the bowl of fruit sitting on the counter.
At two and a half years old, Alex said his first word: “pear.”
Lucie’s heart thumped. She stopped breathing. She sat completely, perfectly still.
“Pear,” Alex repeated.
Lucie sobbed. “Pear! Pear!” she cried out. She rushed to the counter and began slicing her son’s favorite fruit. She sliced so quickly she nearly chopped her finger off.
Two and a half years of silence. Thousands of dollars in therapy. Periods of despair. And now, finally, “pear.”
A wall had crumbled. Word followed word, and over the following weeks Alex built them into sentences. A few months later, he began using his words to ask for things.
Breaking the communication barrier seemed to poke holes in Alex’s social isolation as well. He responded more. Over the next few months, he began playing and laughing with his brother. He no longer gazed off into the distance but looked right at other people. He smiled; he laughed. He let his therapist tickle him.
In February, just three months after Alex had said his first word, he played chase with his father. It was an interactive game, the kind autistic children weren’t supposed to be able to play. Lucie watched, amazed, as Mike ran around the house, doing a loop through the kitchen and the living room, while Alex ran after him. Lucie grabbed her camera. Mike switched directions unexpectedly, and Alex laughed. He switched directions again, and Alex laughed. Mike stopped and turned, letting Alex catch up. Alex looked straight at his dad, ran into his arms, and hugged him. The two high-fived. Tears filled Lucie’s bright blue eyes, and she had trouble focusing the camera.
At Portia, Alex began initiating social interactions with the other children. The therapists urged Lucie and Mike to get Alex into a different environment. The children at the center were predominantly autistic; few of them would engage with Alex socially. The therapists recommended a nearby nursery school they thought would be open to enrolling Alex and allowing him to have a therapist accompany him during the school day. “I was surprised when they suggested it, and really scared,” Lucie recalled. “But I trusted her, the woman who runs Portia; I trusted her infinitely with anything because she was the one who was responsible for his progress. Whatever she would have said, I would have done.”
There was improvement; there were bumps. Alex could communicate with his teachers, but he had no idea how to make friends. Lucie and Mike plotted with the teachers, searching for ways to help Alex integrate with his class.
Things got better. After a year, Alex enrolled in a small but mainstream, private junior kindergarten (the Ontario equivalent of prekindergarten). His therapist tagged along. She accompanied him in the classroom, helping him to integrate in group settings, and offered one-on-one teaching. There were still challenges. There were days when Alex ran around the classroom screaming and days when he threw toys. But eventually those behaviors began to fade. They lessened in intensity. They disappeared. Lucie and Mike began cutting back on the number of hours that Alex’s therapist accompanied him at school. Eventually, Alex’s teachers said she was no longer needed at all.
When Alex was four and a half years old, his eligibility for public services was reassessed. It was a mere two and a half years after his diagnosis, but the experience was completely different. During his first visit, Alex had made infrequent eye contact and never spoke or gestured. This time, he made direct eye contact, introduced himself to the examiner, and initiated conversation. During his first visit, he had paced the room, opened and closed cabinet doors, stared at the lights, and lined up toys. This time, he complied with the examiner’s requests and played with the toys in a more typical manner. During his first visit, the examiner had placed his adaptive skills at the second percentile; this time, he was at the forty-fifth percentile—comfortably within the average range.
There were still a few remnants of Alex’s autism. He had trouble using the restroom in unfamiliar places. He had a comfort toy he spoke to in a repetitive manner several times a day, and he occasionally walked on his toes. But bottom line: Alex no longer qualified as autistic. His diagnosis was stripped away. He could transition out of behavioral therapy and was ready for full integration into the school system.
Although Lucie and Mike had watched Alex’s progress, it was still something of a shock. Could a kid really grow out of autism?
Those at Portia were thrilled; Alex’s development was breathtaking. But for Lucie and Mike, it was hard to fu
lly rejoice. Just over a year earlier, William, Lucie and Mike’s second son, had received an autism diagnosis of his own.
Lucie had been in a hurry to have a second child.
“Basically, I’m up in stirrups, I push Alex out, and I ask how many weeks do I have to wait until I have another kid?” Lucie remembered.
Because she was hell-bent on making up time after putting off starting a family during her medical training, she was pregnant with William before she knew about Alex’s autism. If she had known ahead of time, William would probably never have been born: “I would have been too scared to get pregnant again.”
After Alex was diagnosed, Lucie had watched William like a hawk. She knew that if a boy had an autistic older sibling, the likelihood that he, too, would have autism shot through the roof.
At first, Lucie thought they had gotten lucky. William wasn’t as serious as Alex had been. After a colicky first few months, he was a quiet but happy baby. He was much more interactive than Alex had been. His face lit up when he saw his parents; he was enthralled with his older brother. William’s play was typical in a way that Alex’s had never been. If you gave him toy cars, he didn’t line them up; he pushed them back and forth. The boys are like night and day, Lucie thought. William is going to be fine.
In fact, Lucie began to suspect that William was more than fine. He might actually be quite bright. He had an almost intuitive knowledge of shapes. At twelve months old, he zipped through peg puzzles without any trial and error. He plunked the shapes—even the relatively complex ones—right into place.
He adored letters. At four months old, his face lit up when he looked at books, and at eight or nine months, he began pointing to the words. Whenever he could get his hands on Alex’s PECS binder, he lay on the floor and traced the letters of words like “cookie,” “milk,” and “Magna Doodle” with his pudgy fingers. Once he started crawling, he ignored the assorted toys around the living room and motored himself toward the books. He picked them up, turned the pages, and spent long periods of time staring at them.
The Prodigy's Cousin Page 2
