The Race to Reach Elijah — Part 1
The Race to Reach Elijah — Part 1
Hampshire Life/Daily Hampshire Gazette
May 17, 1996
Two years ago, Christopher and Laurel Peltier were typical young parents. They had just bought a half-duplex off a wooded dirt road in rural Shutesbury, Massachusetts. They juggled several jobs—she as a writing teacher and an office worker, he in human service and two children—Sarah, 2-1/2, and Elijah, 1. They got a dog. They got a playhouse for Sarah. They made friends with the neighbors. They stayed active in the Baptist church they had joined earlier in the neighboring town of Amherst. Life was predictable.
The signs of trouble were subtle at first. Laurel began to worry about Elijah’s hearing. Though happy and affectionate, he wasn’t babbling, and he sometimes didn’t respond to sounds. A hearing test turned up nothing. She put her concerns aside. At 2, he still wasn’t talking. She worried more. A developmental screening led to more evaluations, more tests. She worried a lot. Chris convinced himself everything was fine. Then last summer, the news finally came. Elijah has autism a severe brain disorder that interferes with a child’s ability to learn and communicate.
That discovery has forever changed the Peltiers’ lives. The shifts have been dramatic in part because of who they are and how they have chosen to meet this challenge. Laurel, 30, is a high-energy person used to accomplishing whatever she sets out to do. Chris, 32, works with developmentally delayed adults and is frightened by the future he sees. Determined to help Elijah, now 3, become as independent and communicative as possible, the Peltiers—especially Laurel—have immersed themselves in the field of autism. They have joined national and local networks, done library research, attended conferences and trainings, and become the advocates and managers of an intensive treatment program for their son. They also are determined to turn his disability into something positive, to share everything new they learn with other parents and professionals and, through Elijah, to advocate for the best possible care for special-needs children everywhere. In fact, Laurel has just begun a new job working for an agency in Springfield helping such families obtain services.
Yet despite their effort and optimism the Peltiers say they are painfully aware that ultimately, they are not in control; that the key to the future rests with God and with a puzzled 3-year-old struggling to understand and interact with his world.
This week, Hampshire Life begins this journey with them, prepared to follow wherever it may lead. Through regular visits with the family, the school, the therapists and, of course, Elijah, we will look at the story of one special-needs child, his successes and frustrations, and the ways he affects those around him. From time to time we will record what we have seen, so that he may become more to his community than a string of figures in the school budget, and so that, as his parents hope, his pain may have a purpose.
• • • • •
A TYPICALLY exuberant 3-year-old with an expressive face and his father’s eyes, Elijah Peltier is like his peers in many ways. He enjoys running and climbing, and makes an annual spring ritual of escaping down the driveway. He loves horseplay, hugs, music and puddle-stomping. His favorite foods are bagels and candy. His preschool teacher, Laura Ruhkala, describes his mind as “so bright inside,” and the half-dozen other therapists and consultants who work with him are repeatedly impressed by his ability to pick up on even the subtlest gestures and facial expressions.
But at an age when most children are at last becoming truly fluent, Elijah has no real words. He communicates mainly through instinctive body language, augmented by a handful of sounds “mm” for music, “hup” for help and “g” for go, for example. He is just beginning to learn some symbols of American Sign Language. When left to his own devices indoors, his primary entertainment is running about in spurts, slapping his thighs and squealing, studying the covers of picture books, and watching videos (his current favorites are Disney’s “Pinocchio” and “The Lion King”). He is beginning to show an interest in adults other than his parents, but still pays little attention to other children. He and his sister, Sarah, now 4-1/2, have a mostly silent relationship, coming together mainly in front of the television set.
Little is known of autism’s cause and the exact mechanism by which it disrupts the brain’s functioning. But what is clear to the many researchers, professionals and parents who work with such children is that it somehow interferes with the individual’s ability to take in, process and organize information, resulting in a very limited range of activities and interests. The child’s ability to relate successfully to others is further hampered by difficulty understanding and mastering both spoken and nonverbal language.
His early evaluations, performed between age 2 and 2-1/2, placed Elijah in the mildly autistic range, on the cusp of “autistic-like.” The Peltiers feel that by stepping in now with an intensive program, they are giving Elijah the best chance he has to overcome his disability. This is really the time,” says Chris. Between the ages of 3 and 5 is when we’re going to make a big difference in his life, according to the research. And if we don’t do it now, it’s not going to happen.” Their goal an ambitious one is for him to be fully integrated into a regular classroom, receiving no extra services, by the start of first grade.
IT IS A SUNNY Monday afternoon, one of the first balmy spring days, and Elijah is seated at a child-sized table in the Peltiers’ basement playroom, going through his “trials” with therapist Gayle Alexander. He is doing well today, and for the most part, his attention is good, though he seems excited.
She reaches over from her seat beside the table and gently but firmly centers his body in his chair, and his hands in front of him. “Sit up straight,” she says. Then she sets out two laminated photographs on the table in front of him, and hands him a third, identical to one of a toy car already on the table. “Match picture,” she says. Instantly, he places his card on top of its mate. “Good job!” she exclaims, giving his belly a friendly pat. She whisks the cards away and quickly replaces them with another pair. “Match picture,” she says again, handing him a photo of a book. Again, he immediately places it with its twin. Again, she exclaims over his success. He zips through the whole set this way, matching a toy dinosaur, a jug of milk, a boot and a bagel. “This used to be so hard for him,” she says, offering him a moment of reward time with a push-button toy that plays music accompanied by moving pictures. So far, it is the “matching” trials where he has made the fastest progress.
But not all the drills go so smoothly. Later Alexander tries one that has been giving Elijah trouble, apparently because it forces him to rely solely on spoken commands. To try to make it easier for him, his therapists have been giving the commands in contrasting volumes, then gradually reducing the differences between them. “Stand up!” she shouts. He does so immediately and is rewarded with “good job” and a few seconds with the push-button toy. She takes the toy back, adjusts him in his seat and whispers, “Pat belly.” He stands up instead. “No,” she says, and repeats the command, guiding his hand to his stomach. “That’s right,” she says encouragingly. Then, “Stand up!” He does. She sits him down again. “Pat belly,” she whispers. He stands instead. “No. Pat belly.” She guides his hand. Then finally, “Pat belly,” and he does. “Great job,” she exclaims and gives him a friendly tickle. A moment with the reward toy, then the routine begins again. A few more tries and he gets “Pat belly” twice in a row, so she switches to “Stand up.” He does it. “Great job!” she says. Then he begins to get confused. Twice he responds to “Stand up” by first patting his belly, then quickly standing up. “Not quite,” she tells him. After the second try he begins to cry in frustration. She settles him in the chair and tries again. This time he gets it. “Stand up,” she instructs. “Good job! Pat belly.” He does. “Great job!” On a whim she throws him a curve. “Stand up,” she whispers. He immediately rises. “Good for you,” she tells him. “All done.” He looks at her blankly.
Elijah spends three to seven hours a day, six days a week on such exercises. His program calls for frequent short breaks totaling about a third of his treatment time. In addition, he gets a 15-minute break every hour or hour and a half, in which he and his therapist usually play upstairs or outside. If he’s starting to get tired or irritable, his therapist will try to engage him in vigorous activity—roughhousing on the floor or swinging him in the air—during the break, or intersperse some exercises in which he must imitate her stretching and standing. He typically spends his short breaks listening to music while running here and there about the room, patting his thighs and squealing. The playroom is scattered with toys, but he generally ignores them.
After this trial he seems at a loss. He stays seated at the table, whimpering, then takes Alexander’s hand and leads her to the stairs. He whines in protest when told it’s not yet time for a break. She switches on his tape player and soon the refrains of the Disney song “April Shower” ease his mood. He drinks some juice, gallops to the music and is ready to return to the table.
THE SO-CALLED “discrete trials” that take up so much of Elijah’s time are a highly structured learning situation in which various skills are broken down into minute steps. The approach is part of a behavior modification program known informally as “Lovaas” for its creator, O. Ivar Lovaas of the University of California, Los Angeles. While sometimes tedious and tiring, the approach forces autistic children to pay attention and takes them step-by-step through hundreds of basic life skills. They must begin at the beginning—literally learning how to learn from their environment, something other children do naturally.
Laurel discovered the Lovaas approach last May, when she accidentally picked up a library book called “Let Me Hear Your Voice,” in which Catherine Maurice recounts the “recovery” of her two autistic children through the program.
Laurel’s response to Elijah’s diagnosis had been intense and automatic. A vigorous, efficient person who waits for no one, she threw herself full force at the problem. She brought home piles of books, articles and newsletters about autism. She made scores of phone calls to local and national support networks. She talked to anyone who might possibly be able to help, and anyone who would listen.
Chris, meanwhile, came slowly to the realization that Elijah’s was a serious problem. While Laurel was the cry of urgency, he was the voice of calm. He remained convinced that Elijah was just hard of hearing, even after the first evaluation found a developmental disorder. Chris, who was familiar with autistic adults through his work, also believed Elijah was too affectionate to be autistic—a common misconception. So as Laurel prepared for the worst, Chris believed in the best.
Their contrasting styles have always been both a source of tension and a balancing force.
Chris and Laurel met 12 years ago when both were students at Gordon College, a small, Christian institution on Boston’s North Shore. Though they shared the same group of friends, they at first saw only their differences.
The older of two girls, Laurel grew up in Pennsylvania in a close-knit family of hyper-achievers. A typical weekend visiting her parents and sister, who now share a duplex in her hometown, is packed with outings and activities. Everything about Laurel, from her close-cropped mahogany hair to her rapid-fire speech, seems taut and efficient. She entered college driven to learn and graduated in three years with a major in English.
Chris had already been there two years when Laurel arrived, and was still one class short of a diploma when she left. He ultimately graduated with two degrees—in political science and philosophy—and a nearly perfect grade-point average. He also holds a master’s in theological studies from Duke University. Gentle and kind, he is the quintessential easygoing guy. His hair tends toward the shaggy side, and he’s most at home in a sweatshirt and baggy pants, topped off with a baseball cap.
The last of seven children, Chris’ lessons in patience and acceptance came early. His father had a cerebellar atrophy that affects the body much as cerebral palsy does. He spent most of Chris’ childhood in a wheelchair and died while Chris was in high school. Chris’ siblings went their separate ways, and though most still live around Williamstown, where he grew up, their contact is casual and infrequent.
It was the summer after his graduation before Laurel and Chris finally teamed up. Her parents opposed the relationship, so when the couple decided to marry the next year, they eloped.
THROUGH HER exhaustive research, Laurel amassed a body of information about autism that, at first, was overwhelming. Even the most mainstream treatments for autism have their detractors, and alternative therapies—abound everything from milk-free diets to swimming with dolphins. To make matters worse, says Laurel, “There are always people telling you you’re doing the wrong thing.” At the recommendation of his neurologist, the Peltiers had an EEG done on Elijah—a “nightmarish” process that involved keeping him awake all night and attaching electrodes to his head. The test was intended to reveal any seizure disorder or other brain abnormality. The results turned up nothing. “I think in the frenzy of the diagnosis I was thinking, `I’ll do anything,’ “ Laurel recalls. “Now I’m starting to realize that there are things that are so intrusive that they’re not worth the cost.” The Peltiers decided to focus their efforts first on the least-invasive treatments and the ones they feel have the best chance of succeeding.
“It’s been hard for me to just not accept the guilt that goes with not doing everything today,” Laurel says. “You think, `Suppose we don’t do it for five years, and then we do it and it works?’ But as a parent, you just have to let go of that and say, `I’m doing the best I can.”’ She and Chris have developed a kind of mantra they both quote often: “All we can do is what we can do.”
They put Elijah on two diet supplements: Super Nu-Thera, a multi-vitamin powder that includes high doses of B vitamins and manganese and is commonly used to help autistic children stay focused; and DMG, a widely available amino acid that some believe can boost language abilities. They were simple measures that many parents had reported were helpful. And they enrolled him at the May Center for Early Intervention in South Hadley.
Part of the May Institute, a statewide network of programs for people with special needs, the center serves children under the age of 3. Elijah attended preschool four mornings a week, and worked one-on-one at home with a staff member from the center each afternoon and all day Wednesdays. At the May, Elijah was learning to work with adults other than his parents and was starting to play. But he was forced to leave the program when he turned 3 and responsibility for his care shifted from the state Department of Public Health to the local school district. When it came time to choose a new treatment plan for him, the Peltiers found themselves leaning toward the Lovaas program.
They were impressed with the results reported in the initial Lovaas study, published in 1987, which documented a recovery rate of 47 percent meaning nine of the 19 children in the program were found to be “indistinguishable from their peers” by age 7. Though the use of the phrase “recovery” and the methods for evaluating program graduates continue to be a subject of debate in the autism field, the Peltiers say it is the only program with real data to support its effectiveness. Lovaas also stresses early intervention: It must be started before a child turns 31/2. And the Peltiers felt the highly structured approach would be helpful in a school system that had minimal experience with autism.
Laurel then spent a tense fall contacting Lovaas teams around the country, trying to find one that had time for Elijah. Finally, she was able to arrange for the director of a new May Institute team in the Boston area to help in training local therapists and monitoring a program for Elijah.
Elijah’s treatment also had to be approved by the school system as part of his Individualized Education Plan (IEP). And Shutesbury had to find the money to fund it. It costs approximately $30,000 a year, says Leonard Lubinski, superintendent of schools. Just one meeting of Elijah’s treatment team, held every two to three weeks, can cost as much as $700, depending on who’s in attendance. Laurel’s parents have been paying the salary of one of the consultants. Other than that, Shutesbury is bearing the whole burden. Lubinski notes, however, that if Elijah were not receiving home therapy through the Lovaas program, the school system likely would have to create a second, afternoon preschool for 3-year-olds in order to give him the full day of services he needs a complicated proposal that he says probably would not save much money.
Both the school and the Peltiers would like to see the state offer communities more support for the special-needs services it requires under Chapter 766. Currently, there is no specific state reimbursement for special education, aside from a small allowance figured into the per-pupil aid given to each city and town, Lubinski says. The only federal assistance the town receives is a few hundred dollars a year for each special-needs child.
Shutesbury already is struggling this year with soaring school costs at both the elementary and regional levels, due to a range of factors, including a change in the way the Amherst Regional school assessments are figured, previously negotiated salary increases, a slight lengthening of the school day and an increase in special-needs costs, Lubinski says. Administrators are holding their breath until the town votes on a $30,000 override to help fund the elementary school budget approved at Town Meeting earlier this month.
“It’s hard because we’re in a small town,” Laurel says. “As parents we have a right to whatever services are appropriate for our child, but how do you go into an IEP meeting requesting things that you know there’s no money for?” As one of the organizers of Shutesbury’s Special Education Parent Advisory Council (SpEdPAC), Laurel also knows that if she gets everything she wants for Elijah, there may not be enough left to pay for all of another child’s programs. “It all comes out of one pool,” she notes. Both she and Chris are convinced, however, that everything spent on Elijah now will allow him to take far less from society down the road.
ELIJAH’S LOVAAS treatment began in late January, after his third birthday. While a strict Lovaas program consists exclusively of home exercises like the ones Elijah is doing now, the Peltiers followed the advice of a number of professionals and placed him in Shutesbury’s integrated preschool as well, which includes children both with and without special needs. So, in addition to working with therapists at home six days a week, Elijah spends four mornings each week at Shutesbury Elementary School, where his sister, Sarah, already attends the afternoon preschool. During the summer, he will work exclusively at home, 40 hours a week.
Because Elijah’s preschool section is intended for children who turn 3 by September, he is up to a year younger than his classmates. Still, teacher Laura Ruhkala believes the class time is essential for helping Elijah to apply what he’s learning in his home treatment. For example, she says, one of the discrete trials was to wave, and now he’s using it at school to say hello and goodbye to staff, parents and even visitors. She also sees increasing moments of the type of play one normally expects from a 3-year-old, like the time he went over to a Lego train the other children had built and began pushing it back and forth.
Laying down this groundwork is critical this year, Laurel says, because next year Elijah will be joined in the 3-year-old class by his peers the children who will continue in his grade level throughout his elementary years. A typical grade level in Shutesbury includes 30 to 40 children, with 19 to a class. Laurel hopes that by then he will be far more communicative and involved in the classroom routine. “Those relationships are going to be pretty important relationships,” she says. “And if he’s always the kid who’s excluded, and other kids come to think of him that way, and he comes to think of himself that way ...”
IT IS A WEDNESDAY morning and Elijah’s classmates are gathered at a toddler-sized table, preparing to have a snack. Elijah, who has just come back from a half-hour of solo time in the gym with a therapist, is in the bathroom getting his diaper changed. “Can we sing `Make New Friends,’ and then when Elijah joins us we’ll sing a song he likes?” Ruhkala suggests to the group. As they finish the last verse, Elijah appears with Gayle Alexander. In the classroom, Elijah is always accompanied by either Alexander or teacher’s aide John Dery. The other children seem to take no notice as Alexander directs him to a seat near the end of the table. Ruhkala starts a round of “Itsy Bitsy Spider.” Though he is looking away from the table, Elijah appears to be listening, and his hands seek each other out as the children climb their fingers up an imaginary water spout.
Elijah is suddenly attentive when the food comes out—mini-bagel sandwiches with cream cheese—and eats silently while some of his classmates carry on lively conversations. Ruhkala says there is one child with a little brother and sister at home who sometimes makes an effort to play with Elijah, but she is not here today.
After a little while Elijah stands up, but Ruhkala has stationed herself beside his chair, casually blocking him in with her body. She coaxes him into his seat and turns his attention back to his food. When Elijah finishes his bagel, she lets him get up, even though the others aren’t done. Because his attention span is so short, his preschool routines have been set up to minimize waiting time, Ruhkala explains. He joins group activities only after the other children are seated and ready to start, and leaves early when he gets restless.
With some direction, he puts his cup away and throws out his napkin. Ruhkala takes him to the reading area, where he immediately lies down and wiggles under an exercise mat spread out on the floor. He lies there quietly for several minutes, while the other children gather across the room for circle time. When everybody is settled, seated on the floor, Alexander brings Elijah over, sits him in her lap and hands him a book. He looks at it while the children sing another song. Then Ruhkala brings out some instruments and passes them around. Elijah gets a pair of sandpaper blocks, and Alexander shows him how to grasp the knobs and rub the flat surfaces together. He enjoys this and does it over and over. “Tap your instruments, tap your instruments ‘til the music stops,” Ruhkala sings. The other children catch on quickly, stopping their shakers and bells as directed, but Alexander must reach down and still Elijah’s hands. After a couple of rounds, she switches his blocks for a pair of sticks that can be tapped together. He seems unhappy with the change and whines and resists when she tries to show him how to use them.
Earlier, Alexander had taken Elijah for a walk down the hall to get some milk. It’s the kind of outing he particularly enjoys, and when they returned, he halted in the doorway and tried to pinch her. It took several minutes of coaxing, amidst attempts to pinch and bite himself and her, to finally settle him back into the class. Several weeks into his adjustment to preschool, Elijah began biting, scratching and pinching the staff and himself to express displeasure. Laurel says she had expected it as a normal reaction to the transitions he was making. At the May Institute’s suggestion, the preschool staff began a “behavior chart,” jotting down the details of each incident, including the staff reaction, to try to pinpoint the cause and come up with a consistent response. Such techniques are essential in coordinating the many people working with Elijah.
All told, his program now involves 11 adults: his parents, four one-on-one therapists (Alexander, Dery and two others who work with him at home), Ruhkala, Berry, Shutesbury Elementary speech therapist Emily McClung, and two consultants—Carryl Navalta of the May Institute and Frank Robbins, a local consultant paid for by Laurel’s parents to help implement the Lovaas treatment.
The Peltiers hold “staff meetings” at their home every two to three weeks, and in March Laurel initiated a handwritten weekly newsletter, “The Elijah Report,” in an effort to keep everyone informed and on track. The two- to three-page handout summarizes Elijah’s preschool behavior and the results of his home drills for the week, passes on information about his family activities, reports on school meetings and alerts the team to new issues and upcoming meetings, and raises questions and concerns about his program. The team also uses a daily log book—a simple composition book that goes with Elijah to preschool and back each morning—to jot down the day’s successes and difficulties. The book provides a forum for a daily dialogue, with team members making queries and responding to each other in subsequent entries. Those notations often provide a basis for discussion at staff meetings, and at the Peltiers’ weekly school meeting with Ruhkala and McClung.
“We fight about everything,” Laurel says of the group, “but in a really nice way. ... I always get mad at the meetings, but afterwards I’m glad we have such a mixed team. ... It’s really good for Elijah.” The highly structured Lovaas approach is new for school staff, and it has taken some getting used to. Team members generally characterize the tension the same way: as a struggle between those who are focused on Elijah’s performance on the Lovaas exercises and those who place more emphasis on his behavior in natural, age-appropriate settings. Alexander is the one team member who works with Elijah both at home and at school. Though she had no previous experience with autism, she has worked with special-needs children for years and says she is sympathetic to both points of view. In fact, she admits, “When I first read about Lovaas, I thought it was gross. I thought, `What a horrible way to treat a kid.”’ But after working with Elijah, she says it’s the program she would choose if she had an autistic child. “What I understand now is that kids like Elijah just are not going to learn on their own,” she says.
IT’S LATE AFTERNOON and Alexander is in the basement playroom working with Elijah. Laurel, who just got home after picking up Sarah from preschool, is in the midst of a whirlwind cleanup of the house. She darts upstairs and down with armfuls of papers, clothes, toys and books. The phone rings, and she starts to let the machine get it, but then decides to answer. It’s a close friend, Jim, and after a brief conversation, she volunteers to cut his hair for him. “Come on over,” she tells him. But when she hangs up, she’s shaking her head. “Why do I say these things?” she asks, smiling.
At 4 o’clock, Chris arrives home early after taking his car to be repaired. He strolls through the kitchen, checks in with Laurel and Sarah, and makes a few phone calls. The sound of his voice upstairs is so distracting to Elijah that Alexander decides to end the day a half-hour early. Elijah hurries upstairs to find his father. From the grins on their faces, it is clear this is a high point of the day for both. They tussle on the couch, then Elijah settles into his dad’s lap. There is no greeting between Sarah and Elijah.
When Jim arrives, Chris heads into the kitchen to take over the dinner preparations—ziti and salad. He cooks at a leisurely pace, singing along to the haunting melody of a David Wilcox CD.
After the haircut, Jim stays to eat, and then Laurel and Chris begin a standoff over who should do the dishes. Who’s doing how much is a sticking point for both, they say. And not just because of their contrasting styles and energy levels. Since Elijah’s diagnosis, home has become the center of Laurel’s work world. Last year she quit her job at Greenfield Community College to focus on his treatment. And though she returned to teach two writing courses this semester, even that spills over at home, with papers to grade and classes to prepare. Chris, who has been working two jobs since December to help make ends meet, still looks on his home as a refuge and a place of relaxation. “I’m not going to spend my one day off cleaning the house,” he tells Laurel when she complains about the mess lingering from the weekend.
While Laurel’s new job working with families of special-needs children in Springfield may help ease the family’s financial pressure, at first it only intensified the constant struggle of simply fitting in everything that needs to be done. For a month, until the semester ended last week, both Laurel and Chris were working two jobs. That is in addition to attending all of Elijah’s team meetings and school appointments, getting the children back and forth to two different sessions of preschool, delivering Sarah to horseback-riding lessons and friends’ houses, helping out neighbors whose children need rides, and staying active in autism circles, at church and in the town Laurel is doing the desktop publishing for the new Shutesbury town newsletter and is just wrapping up a resource article for a Northampton-based autism organization. On top of that there are the meals to make, the shopping to do and the house to clean. For three months, Laurel also did Elijah’s Saturday-morning Lovaas exercises with him, until the school department hired a therapist for that day. And on top of it all, the couple continues to pursue new treatments and new tests for Elijah.
In March, they had his blood tested for food allergies, with negative results. Last month a specialist evaluated his language and recommended he be taught other ways to communicate, such as through the use of photos. Chris and Laurel also plan to have Elijah examined to see how well his brain is processing the sounds he hears—a procedure that will have to be done under anesthesia.
The toll these constant demands may be taking on the family worries those around them. “I think they’re doing a wonderful job, and I really respect all the work they’ve put into (Elijah’s program),” says Ruhkala. “But I don’t want Mom to go crazy and burn herself out.”
“I wish that everybody would feel more at peace and that for everyone there would be a more settled routine,” agrees Alexander. It is hard to imagine them maintaining this pace for the two to three years Elijah’s program is expected to last. But, says Chris, “I don’t know what choice we have. ... There’s really not anything we can let go.”
Already, they are fighting discouragement over his slow language development. “We’re very pleased with the progress Elijah’s making, but at this point I don’t see him as a kid who’s going to fall into the `best outcome’ group” of Lovaas students, Chris now says. “I don’t see Elijah in first grade without an aide or some special programming.”
The pressures of work and parenting make it hard for Laurel and Chris to find the energy for each other. Chris says they go out once a month or so, usually with another couple. But, Laurel acknowledges, “It’s not something we prioritize given our time constraints.” Instead, they have committed themselves to saving Sundays for the family. A friend volunteered to do an overnight with the kids this weekend so the couple could attend a weekend conference in Springfield for parents of special-needs children, but Chris has to work, so Laurel likely will stay there alone.
An hour after Jim leaves on this night, Chris heads out to join a weekly game of pickup basketball. The children, who have been upstairs in the television room watching Disney’s “Pinocchio,” now start in on “Pocahontas.” Elijah is on the couch sucking hard on a pacifier, and Sarah is curled up behind him, toying with his shirt in her teeth. Laurel begins picking things up in the bedroom when Elijah suddenly shrieks. She hurries into the TV room to find Elijah bawling and Sarah looking terrified. Sarah doesn’t want to admit what happened (“I’m afraid you’ll spank me,” she says), but finally confesses that she bit him in the back. Laurel comforts Elijah and insists on an immediate apology from Sarah.
“We’re really concerned about him not wanting to be around her,” Laurel says. At the same time, both she and Chris say they know Elijah is giving as much as he gets. Earlier, in fact, Sarah had come downstairs complaining that Elijah had poked her in the eye on purpose. “We try to teach him positive things he can do with Sarah, but that’s going to be a long time coming,” Laurel says.
Elijah does not seek Sarah out for play, though Chris says Sarah sometimes will try to get him to do things with her, such as roughhouse or bounce on the bed. She likes playing the role of big sister by nabbing him when he tries to run down the driveway or enforcing other household rules, her parents say, though her manner can be heavy-handed at times.
Chris and Laurel say they have explained to Sarah that Elijah learns differently from other children, and that he needs special teachers to teach him how to talk and play. She seems to make sense of it in her own way. “She told me one day ... that there are people who talk with their mouths and people who talk with their hearts, and Elijah talks with his heart,” Laurel says.
The therapists who work with Elijah at home try to make a little time for Sarah, too, to help soothe jealous feelings. And, says Chris, “She makes sure that she gets a lot of attention.” Still, Sarah’s life is as steeped in Elijah as Chris and Laurel’s. Though they are in separate preschool sessions, Sarah and Elijah share the same classroom, and one of the same teachers. At home, their house consists entirely of family space, with everyone sharing the same bedroom and even the same bed. With visitors, she often seems hungry for company.
After Laurel puts Elijah in bed, she prods Sarah through brushing her teeth and changing into her nightgown, then heads downstairs to tackle a pile of papers that need grading. “I’ll be up until 10 o’clock doing this,” she says.
“I think it’s two people really struggling to figure out how to deal with the situation,” Alexander says of Chris and Laurel. It is a feeling she knows well. Her youngest child, now 7, is developmentally delayed. Alexander remembers vividly the endless visits to specialists, the answerless questions and the gradual realization that this challenge will be forever. She believes there is a grieving process that parents of special-needs children must go through in order to go on. “You think you’re going to have this one kid, and you end up with this different kid, and you almost have to mourn the kid you didn’t have and find a way to bond with the kid you do have,” Alexander says.
The Peltiers have turned mainly to their religion to make peace with Elijah’s disability. They have been active members for over three years of the First Baptist Church in Amherst, where Laurel taught Sunday school last summer.
“If I didn’t believe in God, there’s no way (I could do all this). It’s too much,” says Laurel. “I had a strong faith before this,” she adds, “but it’s easy to have a strong faith when your life is OK. When your life falls apart, that’s when you realize that your faith is more than something you create.”
For Chris, that powerful belief has a flip side, as well. “Sometimes it’s almost tougher to have faith than not to have faith,” he says. “Because as Christians we believe that God could heal Elijah, so the question if Elijah doesn’t recover is why not? Why weren’t our prayers answered? What is God trying to teach us?”
Copyright © 1996 Charlotte Meryman