The Race to Reach Elijah — Part 2
Hampshire Life/Daily Hampshire Gazette
June 13, 1997
Awarded Honorable Mention for Features by the Sunday Magazine Editors' Association, 1998
We first wrote about Elijah Peltier of Shutesbury, Massachusetts, and his family last spring, a few months after he turned 3 and a year after his parents discovered he has autism—a severe brain disorder that interferes with his ability to learn and communicate. At that time, he had almost no language and required constant adult guidance to make eye contact or interact with people.
His parents, Christopher and Laurel, were pinning their hopes on a highly structured and expensive program known as Lovaas to help him overcome his disabilities. It took them months of frantic research, exhaustive evaluations by a string of specialists, and a persuasive pitch to the special education team of the Shutesbury school system to get it started. The program cost $30,000 in its first year and under the state’s special education law, the town must pay for it. The Peltiers’ goal, admittedly ambitious, was to have Elijah enter first grade in the fall of 1999 fully integrated into his class, without an aide.
Lovaas, an intensive behavior modification program, is named after its creator, O. Ivar Lovaas of the University of California, Los Angeles. It claims a recovery rate of 47 percent documented by an initial study published in 1987, which reported that nine of the 19 children in the program, who started therapy before age 3-1/2, were found to be “indistinguishable from their peers” by age 7.
Hampshire Life is following Elijah’s progress at school and at home, in an effort to open a window on one special-needs child, his family and his teachers. This is the second of a series of stories in which we will record what we have seen.
During the past year, Elijah’s program has undergone some important changes. Last summer, it moved out of the Peltiers’ basement family room and into Shutesbury Elementary School. The shift has allowed school staff to gain more control and has given the Peltiers back their home. It also has made Laurel and Chris more wary of the school. Their unease is increased by a shift away from a pure Lovaas approach, toward one aimed more at including Elijah in the preschool classroom.
The past year has also been one of painful change for the family, punctuated by divorce threats and pastoral counseling, tense silences and personal reflection. As Chris and Laurel work to adjust to the tremendous demands of raising a special-needs child, the constant stress and frustration are upping the stakes not just for them, but for Elijah and his older sister, Sarah, as well.
• • • • •
IT'S A SATURDAY night, and Chris Peltier is winding up a week alone with his son, Elijah, at the family’s duplex in Shutesbury, Massachusetts. His wife, Laurel, has been out of state at a training program for her job; their daughter, Sarah, 5-1/2, skipped kindergarten for the week to stay with Laurel’s parents in Pennsylvania. Elijah has just come off a string of eight-hour school days and an exciting Saturday featuring his favorite swim class at the Greenfield YMCA, a visit to Look Park in Northampton, several towns away, and a stop at McDonald’s. Tired and cranky, he’s now downstairs in the family room trying Chris’ patience with what has come to be known as the video routine.
Chris is half-reclining on the sofa, his big frame stretched over the cushions. Elijah scuttles over, peers questioningly into his eyes, and touches together the fingertips of his two hands—a sign he invented for “movie.”
"No more movies,” Chris declares wearily, signing the word no with his hand. The wild animation of “Aladdin and the King of Thieves” is still flashing boldly across the television screen in the background. “Come here,” says Chris, softly. He reaches out his big arms and pulls Elijah in for a bear hug, hoping to distract him with one of his other favorite pastimes snuggling and roughhousing with dad. But Elijah will have none of it. He whines and cries in protest, squirming his hands free to sign “movie” again.
Finally, after coaxing the sounds “mmm” and “eee” from Elijah’s lips, Chris heaves himself up with a sigh and heads over to the caseless videos stacked high on top of the television set. Pictures of key characters, cut out from magazines, are taped to the outside. Chris shows a few to Elijah, who picks out “Pocahontas.” Chris puts it in the VCR, then plops back on the couch. Elijah dances excitedly in front of the TV through the fast-paced previews and opening credits, squealing and flapping his arms, and occasionally running up to kiss something on the screen. Then the real movie begins. Suddenly the pace changes. The camera pans slowly, the theme music rises. The words on the screen are gone. Elijah watches for a moment, then approaches Chris again, eagerly pressing his fingertips together. “Movie,” he pleads silently. “Movie.”
This scene would be repeated over and over if Chris indulged Elijah, until every video in the stack had been popped in and out of the VCR. Like all autistic children, Elijah is keenly sensitive to stimulation. Bright lights, rapidly changing pictures, music and repetitive noises—all of which are in ready supply in movie previews—are pleasurable for him. But Chris has had enough tonight. Elijah, sensing his father means business, is now crying and grabbing at his own face. Chris turns off the TV and ushers him upstairs, where he distracts him temporarily with a bowl of Spaghetti-O’s.
In the beginning, Laurel and Chris believed the problem was that Elijah knew which video he wanted, but was unable to communicate it to them. So this past winter Laurel spent weeks developing an identification system: finding two identical pictures for each video, taping one to the cassette and making a laminated icon out of the other. The icons were attached by Velcro to the pages of a small book. The idea was for Elijah to ask for videos by giving them one of the icons. But it never really worked. The book now lies empty and abandoned in a corner by the television the icons strewn about the room and lost long ago. It is just one more frustration in what has been a year of altered expectations.
TWO DAYS LATER, on a warm spring evening, Laurel is sitting at the kitchen table reflecting.
"I don’t think I ever really thought Elijah would recover,” she admits thoughtfully. "But I think I thought that Elijah would make a different kind of progress than he’s made, that he would be a different kind of kid than he is.”
It was here, not so long ago, at this sturdy faux-log table, that Laurel spent a nightmare year after Elijah’s diagnosis poring over stacks of clinical abstracts and treatment manuals, searching for help and information in hundreds of phone calls to all corners of the country, arranging visits to doctors and specialists, and later, when Elijah’s program finally was under way, scheduling staff meetings, writing up notes, planning his exercises, and worrying and wondering if they were doing enough.
“I thought we would learn ways to control his development, that we would be able to shape him into what we wanted him to be,” she observes, half-laughing at her own naivete. “I think that’s the biggest thing that I’ve learned: that it doesn’t work with any kid.”
Elijah, now 4, has been in the Lovaas program for a year and a half long enough for many things to become clear.
“He’s not going to be in a first-grade classroom undetectable from his peers,” Chris says flatly. “It seems like there’s a real difference between kids with autism who are sort of visual learners and kids who are auditory learners. Elijah’s definitely a visual learner, and those kids make progress more slowly,” he says. Elijah has made strides—maintaining eye contact, seeking out adults when he wants something, and approaching other children. But his language—both spoken and signed—has been frustratingly slow in coming.
Yet there is a fresh energy in Laurel’s voice lately, mixed with a kind of good-natured resignation. “It’s like I realized all of a sudden that I have done the best I could ... (and that) I can’t do everything,” she says. “I’m not going to be able to do all these therapies and other stuff for him. I just have to be able to do the best I can.”
These days Elijah’s family and teachers are trying to take their lead more from him than from a prescribed program. “I think that we’re looking at what are his strengths ... and can we use those areas of strength to compensate for his deficits?” says Laurel. “That’s really challenging, but that’s where really creative teaching comes in.”
ELIJAH’S SCHOOL DAY is broken down into bite-sized pieces: a carefully orchestrated ballet of solo time, group time; table work, active play; challenges, rests. He rarely does anything for longer than 15 minutes; often it’s closer to five.
On this morning, a Wednesday, he is in the individual therapy room—a 6-by-10-foot, windowless space tucked into a quiet corner between the preschool and kindergarten rooms—working with his longtime therapist Gayle Alexander and a classmate. The door is open and the April sun shines brilliantly through a floor-to-ceiling window across the way. Its rays light up a rainbow of stained-glass-style pictures pasted on the glass and flash on the melting snow dripping from the roof. Later, the play of light and color will mesmerize Elijah, distracting him from the work at hand, but for now he is watching Alexander’s face intently, following her voice and motions, and joining in as best he can on one of his favorite songs.
`The itsy bitsy spider climbs up the water spout,” she sings. “Iiii,” he echoes. “U-puh.” He touches his hands together pretending to lift the spider up, then lets them fall like water. “Ayn,” he sings, then “uun,” as he puts his hands to his head and spreads them out like the sun.
“I think that music is a very powerful tool for him—that language is really going to come through song,” observes Susan Loring-Wells, a preschool aide who works part time with Elijah. Indeed, it has always been a major motivator for him.
Once Elijah has mastered a song, game or toy in the therapy room, he spends several more days or weeks working on it at a small table set up for him in the classroom. Finally, after he is able to successfully complete it amidst the distractions of his classmates, it is worked into his regular preschool day. Circle time, for example, always begins with several of Elijah’s songs. Then, after he has left the group, the other children continue with songs he doesn’t know and activities for which he is not yet ready.
But the private practice, like this, will continue, so that he doesn’t forget what hes learned. In order for the two teachers, two specialists and four aides who work with him at school to keep up with his advances, three large charts are taped to the wall in the therapy room. In careful, schoolteacher print, they list the dozen gestures of American Sign Language Elijah has mastered so far, his 16 vocalizations identifiable as words, and the five songs he can sing along to.
When the session is done, Alexander takes Elijah for a walk down the hall and back, then seats him at a snack table in the classroom for a drink. He downs an entire juice box in seconds, then signs for more. Alexander steps into the bathroom for a cup of water. As she disappears, he rifles through a cooler bag on the table, then suddenly darts across the room and out the door. He zips into another room across the hall, where a group of second- and third-graders is working quietly with their teacher. On the way, he passes in front of his preschool teacher, Susan Breines, who is just returning from the gym with the rest of the children. “Elijah, no!” she calls. The command often is enough to stop him, but not this time. Breines and Alexander, who has now arrived on the scene, give chase, catching up with him at the far end of the room. “That’s the first time he’s ever gone in this classroom,” says Alexander, rolling her eyes.
Childproof knob covers have foiled his frequent escapes from the therapy room, but keeping his impulses in check in the classroom is harder.
Overall, Elijah has made great strides in learning to join in with his class, agree both his teachers and his parents. He clearly delights now in the company of other children and frequently approaches them on his own—something he never would have done in the past.
But his inability to really speak remains troubling. Lovaas consultant Carryl Navalta and educational consultant Frank Robbins believe the real stumbling block is that Elijah is better able to learn through what he sees, than what he hears. Because of that, Navalta says, if he had to predict the future, “I would have to bet on (Elijah) not developing significant language ability ever. Out in Dr. Lovaas’ program” at UCLA, he adds, “they’ll make that determination in three months and focus on other communication methods.” That is, in part, what Elijah’s team has done, simultaneously working not just on spoken language, but also on sign language and a picture board, through which Elijah can communicate by pointing to icons of the things he wants.
Lovaas, himself, has found that visual learners “have a very difficult time with his program, which is very heavily language based,” says Robbins. Still, everyone involved believes Lovaas training has succeeded in giving Elijah other skills. It’s been “like a miracle,” says Laurel. “Everything he can do was introduced through” Lovaas.
Chris and Laurel have struggled repeatedly with the school since it assumed responsibility for Elijah’s education on his third birthday, as state law requires. The Lovaas program was completely foreign to Shutesbury staff, and their reaction was wary. The program, now mandated in Elijah’s IEP—the Individualized Education Plan agreed to by the school and his parents—relies on a technique known as “discrete trial” training. It requires Elijah to be seated at a small table for much of the day, being presented over and over again with simple choices and exercises designed to teach him basic communication, play and life skills. The long hours and highly structured setting run counter to many of the basic tenets of preschool education. The Lovaas model also calls for a home-based program—something schools are not used to.
So in the early months, though the school was footing the bill, it was Laurel and Chris who were the driving force behind the program housing it in their home, coordinating staff, locating supplies, setting goals, and, at one point, even putting out a weekly newsletter outlining Elijah’s progress.
Last June, the school made a first step in taking charge, when it decided to move the program out of the Peltiers’ home and into the elementary school building. Principal and Special Education Director Laura Baker, who joined the school district just last summer, says she assumes the shift was made to improve communication and consistency among staff members working with Elijah. It also allowed the team as a whole—and curious residents—to get a look at what the program was really like, says Laurel, and helped integrate Elijah into the Shutesbury community. But it heightened the Peltiers’ anxieties about their son’s progress. Though staff were better informed, Chris and Laurel began to feel in the dark. And whenever problems arose, they had a hard time trusting the school’s way of dealing with them.
THE TENSIONS have taken a toll not just on the Peltiers, but on school staff as well. Elijah’s main therapist, Gayle Alexander, says she herself gave notice to resign twice over the past year, reconsidering both times. Bearing the brunt of the pressure is Baker, who also must oversee the IEPs of 46 other special education students, while balancing the needs of the school’s 236 pupils. For Elijah alone she spends at least an hour and a half a week in a team meeting.
It is a busy Tuesday morning, and Baker is looking for a place to have a private conversation about Elijah. Someone is sorting papers for a project in her office, so she tries the conference room: occupied. She pops her head into the teachers’ room: taken. Finally, she heads down the hallway to the gym, where she perches awkwardly on the edge of the stage. As she talks, Elijah appears with an aide on one of his regular breaks and runs across the room to tumble on a stack of exercise mats.
There is a weariness in Baker’s voice as she talks about the slow work of building trust, not just with Chris and Laurel, but with everyone in Shutesbury. It’s been a big change, after a distinguished two-decade career in a Maine school district, where she spearheaded the state’s movement to fully integrate special-needs students. “It is tiring,” she says. “It takes time.” In Maine, “I had lots of history. I had lots and lots of years of knowing the community. Trust just was. So it’s a very different kind of thing to come in at square one.”
It’s also been a new experience trying to move a home program to the school one complicated by the Peltiers’ strong feelings about how they want things done and the rocky relations they have had with the school from the start. Baker has no interest in trying to sort out old grievances. “I don’t even pretend to understand any of that because I wasn’t here for it,” she says. But she clearly wishes things could be different now. “I would like all the parents to be very involved,” she says, but “very involved does not mean adversarial.
“While I definitely agree that (parents) know the kid best, there does definitely need to be an acknowledgment that teachers know a lot about education, and those things come together,” she says. “There are really important roles for all the people, and no one set of people can do it all.”
LETTING GO HAS NOT been the only stress for the Peltiers this year. Last summer was a time of major transitions at home, as well.
Both Laurel and Chris took on new jobs. Laurel started working with the Association for Community Living in Springfield, helping other families with special-needs children plan their educational programs. Chris became director of family support services at the Franklin County Association for Retarded Citizens (ARC) in Greenfield. For the first couple of months, the family relied heavily on paid child care, while Chris and Laurel worked out their new schedules. Things had finally settled down by late summer, when the couple and therapist Gayle Alexander began the ordeal of toilet training Elijah.
Basically, says Alexander, Elijah’s Lovaas trials went out the window for a week or two. Instead, she and his other therapists spent nearly all day in the bathroom with him. When it was over, he was urinating on his own, but bowel movements were still ending up in his pants, and if they didn’t notice in time, Laurel says, on the floor, the furniture, even the walls. It drove her into a panic.
“For me, I feel if he doesn’t poop in the potty by the end of this year, will he ever poop in the potty? Or will I be cleaning poop up off the floor when he’s 25 years old?” Laurel says, her voice rising with anxiety at the thought. “Teachers agonize over whether a kid is gaining a certain skill or having a good relationship. Parents are looking at the big picture. ... It’s very hard as a parent to be patient.”
Nerves were already beginning to fray by September, when preschool resumed with a new classroom teacher and part-time aide and without a regular staff member to do Elijah’s afternoon exercises. Tammy Mercer-Derynck, a friend of the Peltiers from church, stepped in temporarily to help out at school. But when the weeks turned into months, and still no permanent aide had been hired, she gave up the effort. The hours were covered off and on by a string of stand-ins.
Meanwhile, Elijah was resorting to biting and scratching and screaming again, behaviors which had been under control. At home, Chris and Laurel relied on spanking to curb his outbursts. But physical discipline was out of the question at school.
Tensions between the Peltiers and the school were escalating, as well. Chris and Laurel were upset that no one had been hired to do the late afternoon trials. Repeated meetings with the school had yielded no results, so finally, in frustration, they sent Baker a letter threatening to request a hearing before the state Bureau of Special Education Appeals for breaching his IEP agreement, which calls for 30 hours a week of discrete trials. By law, a hearing must be held within 20 days once the parents have requested one, says Chris.
The aide’s hours were hard to fill, Baker says, because they fell after school when mothers—the most ready pool of applicants—want to be home with their own children. Finally, in December, she hired Kelly Sobel to handle the afternoons and do janitorial work part time. She was untrained, but at least she was there.
The situation at home was spiraling downward. Laurel and Chris say they were engaged in daily warfare, battling over child care, housework and their competing work demands. Laurel had begun to fantasize about moving to Pennsylvania to be near her parents and sister. Chris, who has never gotten along with Laurel’s family, would not consider it. Believers in the family bed philosophy, Chris and Laurel had slept with Elijah for several years. Laurel, who is a light sleeper, had always been bothered by his frequent night wakings. Now, she moved into a separate bedroom.
“It was tense,” says Chris, his face tightening at the memory. “We did a lot of things independently. We did a lot of dual stuff in the same house for a while.”
Finally Laurel, angry, overwhelmed and desperate, began making plans to separate. Though she says they never told Sarah what was going on, the truth was hard to hide. One day, she says, Sarah complained that all Laurel and Chris ever did was argue. “She said if we lived in Florence (where her best friend lives) and Daddy and Elijah lived in Shutesbury, we wouldn’t argue so much.” For Laurel, it was wrenching. “From the time she was 3 until she turned 5, and even after that, even this year, she has seen things that, if I had known she would see before she was born, I would have been appalled. I would have said, `No way. ... There’s no way any child of mine will ever see this stuff,’ “ says Laurel. “I think back on a lot of that and think, man, I don’t know how she does what she does. She’s an amazing kid. She’s amazingly strong.”
Though they hadn’t found marriage counseling particularly helpful in the early years of Elijah’s diagnosis, Chris and Laurel decided to try it again, this time through the First Baptist Church of Amherst, where they have been active members for several years. “We pulled in a lot of people from the church,” says Chris. “We did a lot of pastoral counseling. We met with one of the elders and his wife. It was a very difficult time.”
Though Chris says he believes “it would have come to a head no matter what, just because we’re the people we are,” he admits that coping with Elijah’s needs didn’t help matters. “It just puts more stress on an already stressful insititution,” he says. He notes that while the divorce rate for the general population is around 50 percent, it’s half again as high for families with a special-needs child.
“I really thought we were done,” Laurel says now, seemingly amazed to still be sitting here in her kitchen, the site of so much pain. “I kept setting dates ... (but) I could not shake the feeling that I was supposed to be married to Chris.”
Then Christmas came, and it seemed the whole family had hit bottom. Laurel was laid up for almost two weeks with a terrible flu, so sick she could barely get out of bed. Chris and Elijah weren’t much better. Desperate, they asked Laurel’s parents to come get Sarah, who was well, and take her to their home in Pennsylvania for the week.
Finally, drained and despairing, too weak to fight anymore, something began to change for Laurel. “Sometime after the first of the year,” she says, “I just stopped setting dates.” Instead, she began thinking—and thinking and thinking. Her mind exploded in revelations that kept her up for hours at night, she says. Suddenly, she saw a whole new possibility for living her life.
“I (had) spent so much time just reacting to all the tragedies,” she says, that she had never stepped back and looked at what it was doing to her. Now she didn’t like what she saw. “I thought, `What is this? Am I going to be always arguing, always fighting with people and always in a defensive mode?’ “
All the training Laurel had been getting at work on team building began to click in a new way. “I realized I can be a fighter, because that’s what I am, but ... I can be strong and I don’t have to be hostile.”
At first, Laurel says, she thought mostly about Chris, and about how she might do for him what she had been doing for the families she helps on her job. She worked hard, she says, at identifying the things that were bothering her, and at communicating them clearly to him. Chris listened and made changes, she says. Though he believes it’s the everyday chores he tends to—like washing dishes and doing laundry—that have improved relations, Laurel says the most important shift has been his attitude. “When I ask him to do something (now), he doesn’t automatically raise an eyebrow,” she says. At the same time, they found themselves turning to each other for professional advice in their jobs and in their outside consulting work as educational advocates for other families with special-needs children. They had developed their own unique styles and expertise—Chris as the hard-liner; Laurel as the negotiator—and they often referred cases to each other. For the first time, it seemed, they began to really value their differences, and to weave a new alliance based on mutual respect.
AT SCHOOL, MEANWHILE, the Peltiers continued to be frustrated by what they felt were shortcomings. They liked Sobel, who was finally in place as Elijah’s afternoon aide, but felt the school had never prepared her properly. They also felt that in general, Elijah’s program was inconsistent. So, after several weeks of raising their concerns at school meetings, they sent Baker another formal complaint. This time, they demanded eight to 10 hours a week of outside consultation for staff training—or, again, they would call for a state hearing.
It was not a prospect they relished. “We would have won,” says Chris confidently. “But nobody wins at hearing.” Says Laurel, “It would take about four months to get all the papers together, and in the meantime Elijah would be getting what he’s been getting: an inconsistent program.”
In some ways, it proved the final straw for the school. First, Laurel and Chris met with Baker and Leonard Lubinsky, the district school superintendent, to review the situation. Then Chris followed up in a solo meeting with Baker that left him “ready to go to hearing.” But in late February, Baker and Lubinsky called another meeting. This time, only Laurel could attend. Sitting in the big conference room, they poured their “thoughts and feelings and opinions” on the table, and “instead of hostility, there was a lot of honesty,” Laurel says. “That was a shocker to all of us. It ended up being the turning point where we all said, `Why are we going down this path?’ “
Lubinsky and Baker made a proposal: let the school take charge for a few months, calling in consultants only if needed, and see what happens.
“We were taking advice from the consultant to the family, taking advice from the consultant that the school district had hired, but in neither case were we getting the advice that we were seeking,” says Lubinsky. “Unless we are providing the education that we want for a youngster in the way we understand it, it is hard for us to respond to parents when they have dissatisfaction ... and do it with a sense of our own integrity.” Though he acknowledges that outside consultants “are not cheap,” Lubinsky insists the high price tag was not a central concern.
Persuaded that the administrators had her son’s interests at heart, and still steeped in her revelations at home and at work about team-building and collaboration, Laurel was in an agreeable mood. She and Chris had every right to go to hearing, she maintains, “but this isn’t about rights; it’s about what’s best for Elijah. The truth is, it’s not best for Elijah to have all these people fighting about him and have all this hostility around him.”
Even Chris, who says they probably wouldn’t have accepted the proposal if he’d been there, admits it has merit. “One of the unintentioned side effects of, mostly me, being in there ranting and raving all the time about their not providing the services for him was everyone feeling really bad, like we were always being negative about what was going on for Elijah,” he says.
“It’s hard to let go and basically just wait and see what someone else can do,” Laurel says later. But “the truth is, a staff that doesn’t feel comfortable can’t deliver good services.”
IT’S A MONDAY afternoon, the end of Patriot’s Day weekend, and Laurel is fresh from her out-of-state conference and a quick visit to her parents in Pennsylvania. The air is warm and moist, the doors are open, and an easy contentment flows through the house. Laurel is in the kitchen, still dressed in corduroy shorts over knee-length long johns after a day of yard work, concocting homemade flour tortillas for dinner. Her hair, which a year ago was close-cropped, now falls around her neck in an unruly perm. It is, she admits, a good barometer of her mood. She’s growing it partly for Chris, she says, and partly as a hedge against the future. “When I feel like I can’t control anything in my life, I can cut my hair,” she says, laughing. She talks about a recent impulse buy she made an acoustic guitar to replace one stolen several years ago. Now, she says, she is playing regularly again and performing with their church worship group. She also has taken up reading for pleasure—an indulgence she had let slide since Elijah’s diagnosis.
Chris is fantasizing about adding an addition with another bedroom. The broad sweep of his hand takes in the deck off the living room, where he dreams of expanding. He is newly inspired, after a day spent helping their close friend, Jim Derynck, move into a new home. For now, he settles for rearranging the furniture. He and Derynck take the living room couch downstairs, to what is now the TV/playroom, and separate Sarah’s bunkbeds so that Elijah can sleep in one. The latter reveals a change of heart for Chris, who has been a strong proponent of the family bed. Though Sarah moved to her own room a while ago, Elijah has been harder to wean. On this night, he will find his way back under his father’s covers, but within a few weeks, Elijah and Sarah will be sharing a room the whole night through—and Chris and Laurel will have their own bed for the first time in years.
The tortillas done, Laurel, Chris and Jim sit down at the kitchen table to eat. The banter is lighthearted, and there’s a lot of laughter. Elijah, who had dinner earlier, is watching videos and dancing around the playroom. Sarah is outside with Derynck’s 5-year-old stepdaughter, Kayla, playing hopscotch. There are footsteps on the basement stairs, and Elijah emerges, squealing and signing “movie.”
“What do you want? Movie?” Laurel asks. “Mmm, eeee,” comes the clear response. “OK, let’s go,” says Laurel cheerfully. “If he can say it, he can have it.”
She escorts him back downstairs, where she puts on Disney’s “Pinocchio.”
A minute later he reappears clutching another video. Laurel looks at it and laughs. “You want to watch `Dr. James C. Dobson: Questions Parents Ask?’ “ she asks him. He makes his kissing motion, popping his lips together loudly. “Kisses won’t work,” she tells him, coaxing out another “mmmm, eee.” They disappear downstairs.
Chris is staying out of it altogether. “The child is driving me bonkers,” he says, biting into another burrito. “Every once in a while it seems it would be so great to have two typical kids,” he says later. “It would just be so easy.”
THE MOODS WILL continue to ebb and flow in the coming months. As Chris says of the marriage, “We’re not totally out of the woods, but (things) are a thousand times better.” Just a few weeks ago, he sent school officials another stern letter, urging them to get some more consultation. Despite some gains in communication Elijah had made in the previous couple of months, Chris and Laurel said, he had fallen back into scratching, hitting, screaming and his old self-stimulating behaviors, such as spinning and flapping his arms. This time, though the letter was strongly worded, it contained encouragement instead of threats.
“What’s really on my mind lately is how to work things out with schools. What does it mean to have a kid with special needs and have him enrolled in a public school system, and what’s important?” observes Laurel. “I don’t feel as out of control. I don’t feel as helpless, like my options are only go to court, go to hearing, or accept what I’ve got.”
Last week, Elijah’s behavior finally settled down again, Laurel says. Both the Peltiers and Elijah’s main aide, Gayle Alexander, say they’ve noticed it seems to cycle in and out of control every couple of weeks, often worsening just before he masters a new skill.
Educational consultant Frank Robbins, who has worked with the family from the start of Elijah’s Lovaas program, sees the turmoil of the past year as a natural part of the process. “There are lots of bumps and potholes in the road” in dealing with autistic children, he says. “It’s not like giving an insulin shot for diabetes. You’re talking about imprecise educational approaches that are applied by humans, to humans.”
“A lot of times with this (Lovaas) approach, you’ve got parents who are, in a sense, banking on recovery,” says Robbins. Then, after they see the reality of their child’s progress, they must go through what is “almost a reacceptance of their child’s disability in much the same way as when they got the diagnosis at age 2.”
Laurel believes the phases are essential in coming to grips with the reality. “Every parent of a young child with special needs is convinced that their child is going to recover, and they’re going to aim for that,” she says. “It’s trying to figure out: What is hope?”
Copyright © 1997 Charlotte Meryman