Inspired by the lives of real people, Jamie’s Watch tells the story of Brian and Marianne Spencer and their autistic son, Jamie. This novel opens an authentic and compassionate window into the world of autism. Through it, you will share in the anguish and joys of Jamie’s parents. You will hike with Jamie, play his unique brand of football, and accompany him through the dark tunnels of Knobby Cave. And you will discover the ancient pocket watch that is intimately linked to the boy’s life.
The following are brief selections from different chapters of Jamie’s Watch.
1. THE DIAGNOSIS
Brian turned the lock and opened the front door of the house. Marianne slipped quietly past him, stumbled into the living room and collapsed wearily on the couch. He followed her into the room and sat down on the carpet at her feet.
Marianne reached up and turned on the table lamp. Slowly, methodically, she unfolded the paper that had been clutched in her left hand. Carefully smoothing out the creases, she focused on the last two paragraphs and read them for the third time.
This three-year, nine-month-old boy shows a number of indicators of early infantile autism. Although estimated intellectual function would place him in a retarded range, observational inferences suggest that he has normal motor development and memory. He shows evidence of several behavioral deficiencies often noted in autism. His play behavior is generally non-specific and idiosyncratic. He has developed no friendships and does not interact with children in any adaptive way. There are almost no attachments to family, although he does not totally resist their interactions. He shows marked attention deficit and little or no eye-to-eye contact. There is almost no evidence of language development although speech sounds have developed.
All evidences taken together suggest an autistic pattern and this child might benefit more from a treatment program geared to these symptoms rather than a typical program for mental retardation. He is not currently showing marked behavior problems and in this regard shows a much better prognosis than many children with this disorder.
DIAGNOSTIC IMPRESSION: Infantile Autism, full syndrome present
Gerald D. Haslam, Ph.D. Consulting Clinical Psychologist
She folded the paper again, and dropped the hand that was holding it into her lap. Suddenly she began to cry. Held in check for almost an hour by monumental effort, the tears broke loose with the crash of a summer thunderstorm. She sobbed uncontrollably for several minutes. Brian moved up beside her, put his arms around her and held her close for a long time. “Marianne,” he whispered hoarsely, stroking her hair and kissing her face repeatedly.
When she could speak, she called his name and hung on it for support. “Oh, Brian,” she cried. “Not this. I never thought it would be anything like this. Autism! Not Jamie. Not our son.”
He looked into her face. “Marianne, listen to me. It’s just a word. There are lots of children who have this condition.”
“Brian, I’m afraid. Everything I’ve ever heard about autism is so awful. Children who never talk. They just sit and rock all day. They stay up all night. They don’t ever look at people. They . . . hurt themselves.” Her sobbing reached a new crescendo. “I can’t stand the thought of Jamie being like that!”
“Marianne, let’s not cross bridges that aren’t there yet. The psychologist said his condition isn’t as severe as many autistic children. Remember? Maybe he’ll do better than we think. At least now we have some idea what’s wrong. We can finally do something to help him.”
She didn’t answer. Shaking her head, she pulled his arms away and turned her back to him. Then she got up from the couch and walked out of the room and down the hallway to the master bedroom. Brian gave a deep sigh and fell back into the cushions of the couch.
Marianne closed the bedroom door behind her. With reflexive movements that seemed more like a dream than reality, she undressed and put on her nightgown. Only after she had put her clothes away and sat down on the edge of the bed did she try to face her thoughts. The despair that had swirled nebulously through her mind for weeks had finally taken a definite and terrifying shape. So now she knew. The wait was over, the mystery solved, the answer found. But the questions were just beginning. What was ahead for Jamie? For her and Brian and the girls? Would she be trapped at home caring for a disabled child? Would Jamie remain totally non-communicative? Would he ever be able to dress himself and bathe himself? Would he go to school? Would he end up in an institution someday? Her mind jumped precipitously from one dreadful scenario to another.
Unexpectedly, her thoughts settled upon another unbidden image: Brian sitting dejectedly on the couch where she had left him. A wave of guilt washed over her. She hadn’t meant to leave him like that, didn’t want to hurt him just because she was hurting. But this was one of those times when she just had to be alone. She hoped he would understand.
Marianne forced her attention back to her surroundings. Absently she pulled back the covers, turned off the light, and got into bed. She lay there for a long time, praying for insensibility. The tears had stopped, but deep down inside the part of her that was a mother ached and wept for the loss of ever so many hopes and dreams.
Finally, mercifully, she fell asleep.
2. THE CHALLENGE
Eager to take advantage of what time remained before her children and husband came home from school, Marianne changed into sweats and sneakers and climbed onto the exercise bicycle in the family room. She set the timer for 20 minutes and began pumping. As she pedaled, her mind drifted back to her conversation with Candi. She began to wonder if she had handled that situation right. Did she say too much? She wondered if she had come across as overly dramatic, too anxious to talk about the challenges of having a handicapped child. After all, other people had their problems, too. Maybe she was making too much out of it. Then again, it was kind of a big deal. Frightening for the present, terrifying for the future. Like she had told Candi, there was no way of knowing what would happen in ten or twenty years. She decided that uncertainty was the worst thing of all.
If only there were something she could hope for.
She was perspiring now. She pedaled faster, pushing her legs into the bicycle. It felt good to push.
There was that word that Jamie had spoken in the living room. Granted, she had heard him say other words in the past. But usually they were just echoes or ritualistic expressions. This one had been different. Jamie hadn’t just said “mommy.” He had called her mommy. If he could do that, couldn’t he learn other things as well? Maybe it would take him a little longer, but he could do it, especially with extra help. She would provide that help. She put her feet firmly into the pedals again and fought her way forward.
As soon as she finished exercising, Marianne headed up the stairs to find Jamie. He was not in his room so she began checking out the rest of the house. She found him, not inside the house, but in the backyard in his sandbox. The little boy had a spoon in his left hand. He was scooping up the sand and tossing big clumps of it into the air. Some of it had settled in his hair and on his clothes. But his mother resisted the temptation to clean him off. Instead, she stopped at the edge of the sand pile, crouched down to put herself at his level, and studied him intently in order to reassess his potential.
Jamie paid no attention to her. He continued clawing at the dirt. He had now created a little hole in the sand. He was looking at the hole, apparently intrigued by the results of his efforts.
Marianne continued to watch. She looked at the curly brown hair on the top of Jamie’s head. Right now it looked more like a dirty mop rag. She searched his face, finding little expression or emotion there. She gazed intently at his eyes, as if to measure the intelligence within by looking through those two small windows. He averted her gaze, and in the end there was little to be learned from the eyes. Jamie’s mind remained a mystery to his mother. She wished she could reach her hands inside the little head and rearrange whatever was in disarray there.
Instead, she reached out in the only way she could—with her arms. She put her hands around Jamie’s waist and lifted him up. Then she pressed him close against her breast, curving her arms around his body and squeezing him tightly, pressing his cheek against her own. “Jamie,” she said. “I love you.”
There was a piercing scream. Like an insect trapped in a bottle, the little body writhed and squirmed and pushed away from his mother’s embrace. Startled, Marianne dropped him to the ground. Thrusting her hands away, he retreated back into the sandbox. He stood there for a moment, panting heavily and crying softly. Then he sat down in the sand and began digging again.
Marianne turned away and walked slowly back to the house. For the second time that afternoon, she was crying.
3. THE BLESSING
As they walked back to the trailer, Brian slowed so Jamie could catch up to him. He put his arm around the boy’s shoulder as they walked together. Jamie flinched a little and bashfully tilted his head away from his father, but he didn’t try to escape. He seemed unsure whether the old don’t-touch-me rules applied in this new setting. Brian took advantage of the ambiguity for a rare moment of physical contact.
He glanced at Jamie out of the corner of his eye. The boy ambled along with easy flowing but somewhat awkward steps. There was something unnatural about his gait. He walked flat-footed, body tilted slightly backward, his feet reaching out like a hen’s claws. The unbalanced shuffle didn’t bother Brian. Jamie had always walked that way. It was part of his personality.
So was his face, a countenance as expressionless and unreadable as the rocks in the background. But it was not an ugly face, nor was there anything unnatural about it. Hazel eyes; slightly parted lips; a soft, rounded chin; and freckles—the face of universal boyhood.
Jamie’s hair, tousled and uncombed, was also beautiful. The long brown locks had a soft, natural curl that Angela could not duplicate in a half-hour’s work with her curling iron. Brian resisted the urge to put his hand on top of that curly head and shake it playfully. Other fathers might do that, but he knew he better not try it. Not if he wanted to preserve the present side-by-side arrangement.
As he looked at Jamie, Brian thought about the isolation and loneliness that were the boy’s constant companions. He knew he didn’t understand, couldn’t understand, how the world looked through Jamie’s eyes—but he could sense the loneliness. He wished he could penetrate that loneliness, share the burden, ease the pain—but he didn’t know how to do it.
“Jamie. I love you,” he said simply.
Acting on an impulse, Brian led Jamie off the road onto one of the trails that took off in every direction from the central camping area. The boy went willingly; he liked hiking. He followed his father through the rocks into a small enclosed area. On every side tall cliffs rose from the valley floor like the walls of a fortress. The top of the cliffs blazed with fire from the morning sun, though the valley was still shrouded in shadow. Underneath, the soil was red and dusty. A few scraggly bushes clung precariously to cracks in the rugged walls, and here and there a clump of grass or wild flowers bloomed at the edge of the sandy trail.
Brian put his hand on the solid wall and felt the gritty texture of the sandstone with his fingers. He put his other arm around Jamie’s shoulder and pulled him closer. Passive and subdued, Jamie submitted to his father’s touch, gazing reverently with him at the majestic rocks that surrounded them. For a few moments, the boy stood with the man, reconciled through the mediating power of nature, joined in a silent bond that temporarily transcended the vast gulf between them.
It was a moment Brian would remember for the rest of his life. He stayed there as long as he dared, one arm around his son and the other reaching out to the empowering walls of the canyon. Then, reluctantly, he pulled his arm away from Jamie’s shoulder and nudged him gently back down the path to the campground.
4. THE HOPE
“Tired?” Brian asked as he pulled up another chair.
Marianne looked up and smiled. “A little, I guess. I’m not used to all this outdoor activity. It’s been fun, though. Except for that scary moment on the Delicate Arch trail.”
“What scary moment was that?”
“I guess I didn’t tell you about it, did I? Well, it was when we were on that section of the trail with the big drop off. Do you remember that part?”
“I think so.”
Marianne tried to remember the details. “I got there first with Jamie,” she said. “You were still back on the trail behind us. When I saw that cliff, I got worried. I had horrible visions of Jamie stepping nonchalantly off the ledge and falling to his death. But when I tried to take his hand, he balked and made a fuss. Then I got really panicky because I thought he might fight against me and drag both of us over the edge. Finally I decided it was better to step back and not make a big deal about it. When I did that he calmed down and made it just fine. I was sure nervous. But, you know, I think I learned something important from that experience.”
“What did you learn, Marianne?” Brian poked at the fire with a stick.
“I learned that things go better with Jamie if I just relax, accept him as he is, and don’t worry so much about him. I realized today that he really is a person—not just a project. The quality of his life is not the same as ours. He’s different in so many ways. But . . . how can I say this? The similarities outweigh the differences. I think I have focused too much on the differences. I want to see him more as a person. I want to appreciate him for what he is.” She paused for a moment, then continued tentatively: “I don’t know if I’m making any sense.”
“You’re making a lot of sense.”
“It’s funny. I don’t expect as much anymore. Maybe if I expect less, I’ll get more.” Marianne’s voice trailed off momentarily as she stared at the fire. She picked up a twig from the ground, snapped it in two, and dropped it into the flames. Then she stood up and turned her back to the fire. Slowly, emphatically, she spoke again.
“There’s something else, Brian. You know, I have the feeling that there’s more to Jamie than we see. We don’t know who he really is. He’s like a horse with hobbles on its legs. But the hobbles are not really part of him. They’re kind of a temporary restraint. Someday, when those hobbles come off, we’ll find out that he’s just like the rest of us.”
“What if the hobbles don’t come off?” Brian interjected softly. “I know we need to keep hoping for something that will make him normal, but realistically . . .”
“I’m not talking about that,” Marianne interrupted, shaking her head. “I’ve accepted the fact that Jamie will never be whole in this life.” Her voice was husky. “Brian,” she said, with an intensity that brought his head up quickly to meet her eyes, “If there’s a heaven, and if I ever get there, I just know I’ll find Jamie there, too. Then he and I will sit down and have a long talk. He’ll tell me what it was like to live with us: what he learned; how he felt; what was going through his mind all those times when nothing came out of his mouth. And then I’ll find out . . . I’ll find out who he really is.”
Marianne searched her husband’s eyes one last time. Then she turned her face toward the fire. Brian got up from his chair, moved over beside her, and put his arm around her waist. After a while, when the light from the fire had grown dim and the stars were bright overhead, they turned away from the fire and walked hand in hand back to the camp trailer.