The Race to Reach Elijah — Part 3
The Race to Reach Elijah — Part 3
Hampshire Life/Daily Hampshire Gazette
Sept. 4, 1998
Awarded First Place for Features by the Sunday Magazine Editors' Association, 1999
IT HAS BEEN OVER two years since Hampshire Life first wrote about Elijah Peltier of Shutesbury, Massachusetts, and his family, almost three years since they first shared their story in the Gazette's Living section, and nearly three and half years since Elijah was diagnosed with autism—a severe brain disorder that interferes with his ability to learn, communicate and form relationships.
Hampshire Life has been following Elijah through his preschool years to observe the early efforts made by his parents, teachers and therapists to help him, and to bring to life the experiences of one special-needs child and his family. With Elijah beginning kindergarten this month, this is the third and final installment in our series.
When their ordeal began, Elijah was 2 years old, and his parents, Chris and Laurel, had dreams of his recovery. In the spring of 1995, Laurel quit her job as a writing teacher at Greenfield Community College to immerse herself full time in the world of autism, contacting teachers, specialists and fellow parents around the country in search of a treatment program that might reach her son.
In January 1996, he began an intensive, expensive program at home. The cost—about $30,000 a year—was covered by the Shutesbury school system. Known as Lovaas, after its creator, O. Ivar Lovaas of the University of California, Los Angeles, the approach uses concentrated one-on-one learning sessions. While the technique continues to teach Elijah many new skills, he failed to show the dramatic improvement the Peltiers had hoped for—hampered in part by his inability to speak. In the summer of 1996, Elijah's program moved into Shutesbury Elementary School, where the Lovaas approach was foreign and difficult to implement effectively.
The year that followed was rife with tension and frustration, and it boiled over into legal threats against the school. Like many parents of special-needs children, Chris and Laurel found the stress was chipping away at their relationship, as well. There was talk of separation and a last-chance try at pastoral counseling. By last summer, they had taken the first fragile steps toward rebuilding relations with each other and the school.
This past year has been marked by new cycles of despair and hope, as Laurel and Chris continue their struggle to understand and accept Elijah's limitations and shape a meaningful future for him, for themselves and for their family.
At 5-1/2, Elijah still cannot form words, though the Peltiers are now confident that he understands what is said to him. He communicates by pointing out pictures in an ever-expanding, personalized notebook of icons, augmented by a few words of American Sign Language and occasional sounds.
Because he is now unpredictable and often agitated and aggressive, Elijah must be kept under close watch at all times. He is accompanied at school, at camp and at church by an aide who helps control his behavior, keep him focused and move him through his day. At home, that exhausting job falls to his parents.
Chris, 34, and Laurel, 32, have forged a new bond with each other and put their experiences to work professionally, dedicating themselves to sharing their knowledge with other special-needs children and adults and their families.
But their dreams for Elijah have folded down to just this: that he may find a voice the world can hear and a way of being it can accept.
* * * * *
LAUREL PELTIER HAS JUST picked up her son, Elijah, from school. It’s 1 o’clock on a warm Wednesday in June—his only half-day of the week—and they are on their way to Greenfield for a doctor’s appointment at 2, followed by a routine blood test at the hospital.
Within a half-mile of Shutesbury Elementary School, Elijah wriggles out of his seat belt—his latest trick—and stretches out for a rest. As they round a corner on the rutted dirt road that passes their house, Laurel comes face-to-face with the town grader repairing the winter’s damage. She brakes suddenly and Elijah careens forward, banging into the back of her seat. He whimpers but recovers quickly and bounces to his feet. Standing behind her seat, he reaches his hands around her neck in an absentminded stranglehold. “HEY! NO!” she yells sharply, eyeing Elijah in the rear-view mirror as she navigates the curving road. He lets go and switches instead to touching the hair that hangs down alongside her neck—a move Laurel says is often a precurser to hair-pulling. “Hey! That’s not allowed!” she yells again. “On my shoulder,” she orders, directing his hands to a safer resting place.
The incident prompts a quick, unplanned stop home, where Laurel rounds up a booster seat with a locking lap bar. She fits Elijah into it and hands him a bag of McDonald’s french fries she picked up earlier. This time he stays put, and calm prevails until they arrive at the medical building a half-hour later.
The ear doctor, with whom Elijah has an appointment, is on the second floor in the back, and Laurel keeps a firm grip on Elijah’s arm as she leads him up the stairs and down a hallway to the office. The moment they’re in the door, he starts signing the word “drink” with his hands, so they backtrack to a hallway water fountain, where he promptly soaks the front of his shirt trying to quench his thirst. They return to the waiting room and she holds him firmly by the arm as she checks in at the main desk. The receptionist asks for her insurance card, and as she tries, one-handed, to open her wallet and slip it out, Elijah drops to the floor, almost pulling her over. “You can go sit,” she tells him, motioning toward the couch. He walks a few steps in that direction, then, in a flash, is out the door and down the hall. “ELIJAH! NO!” she commands in a firm voice, following him into the hallway. He stops and allows her to bring him back to the couch. Instead of sitting, however, he keeps lying down on the floor. “Elijah, up,” she instructs. “Here, look at the books.” She directs him to a stack on the coffee table. He drops to the floor again.
Through the interruptions, Laurel manages to complete the check-in. She sits down with Elijah on the couch and, pulling him into her lap, tries to interest him in a book. He’s too wiggly to focus and keeps signing for another drink. “No, later,” she says each time, signing the words as she speaks. After several rounds of this, she turns it into a game: “Mom says, ‘No,’” she whispers in his ear. He signs for a drink again. “No,” she whispers again. He giggles, then he tosses his head back, almost hitting her face with it. “Don’t you do it,” she warns him. “If you do that you’re going to get a spanking.”...
Over the next ten minutes, Laurel takes Elijah to the bathroom, distracts him here and there with a series of tickle games, and heads off one attempt each to hit, bite, scratch and kick her. Near the end of the wait he screams loudly. “Elijah, look at me: No,” Laurel says firmly. He screams again and she places her hand over his mouth. “No,” she says. “Shhh.” He repeats it back to her quietly: “Shhhhh.”
It’s the same story at the hospital, where they wait for the blood test. Though Elijah’s behavior doesn’t seem to get them any faster service either place, that’s not always the case. “You should see the people at the grocery store open registers real fast,” Laurel says, grinning.
Despite the difficulties of this afternoon, Laurel observes with satisfaction on the way home that “today was a pretty good day” for Elijah. “At least he was happy.”
THAT IS NOT ALWAYS the case. Unpredictability has been one of Elijah's hallmarks this past year, with his behavior shifting day to day, week to week, and month to month. The Peltiers have come to accept these cycles of change as one more unknown in a life of uncertainty.
It used to be that Chris and Laurel could gain some temporary peace by putting him in front of a video, where he would dance about, making sounds and occasionally running up to kiss an image on the screen. But Elijah is no longer interested in watching television.
That change, combined with his new unpredictability, has made it hard for Chris and Laurel to attend to even the most basic, everyday chores, such as making dinner and cleaning the house.
Left to his own devices for even a moment, Elijah has located matches and tried to light them, almost poisoned himself by drinking laundry detergent, and escaped through the woods to the neighbors' duplex, where he went upstairs and used the bathroom, then put in a video and sat down to watch.
In fact, things took such a nosedive last fall—with Elijah biting, pushing, hitting and pinching so frequently that he had to be largely isolated from other children—that his parents finally turned in desperation to medication.
"I was just freaking out,'' recalls Laurel. ''I really thought that I was losing it. He could not go anywhere or do anything. It was a very, very difficult time for me. I thought, 'I cannot live like this.' ''
Her choices seemed limited, she says: ''I could choose to medicate this 4-year-old kid, which I adamantly didn't believe in, or I could put him in a residential placement, or I could accept the fact that he would never be around people again.''
After an unsuccessful trial of clonidine, a blood-pressure medication also used to reduce anxiety, they ended up with Zoloft, an antidepressant similar to Prozac. ''They say it takes three weeks to get into your system, but he was a different kid in two days,'' says Laurel. For six months, it was ''like a miracle,'' she says. It had no apparent side effects. He slept easily at night, he wasn't agitated, and, most importantly, he was not aggressive.
But as occasionally happens with this class of drugs, eventually the Zoloft seemed to just stop working. Subsequent trials of Ritalin, a stimulant frequently used to treat children with attention deficit hyperactivity disorder (ADHD), and Luvox, an antidepressant also used to treat obsessive-compulsive disorder (OCD), proved futile. Elijah became so agitated on the Ritalin, in fact, that he was sent home early from school for the first time ever.
''Now they're talking about putting him on Risperdal, which is a heavy-duty antipsychotic. He's only 5 years old!'' says his father, Chris Peltier. But the Peltiers have had enough for now. In addition to disliking the drug, they are tired of the whole process. ''Med trials are hell,'' says Laurel. ''He could be up all night. His aggressiveness could increase. He could become lethargic. You just don't know what you're in for.'' On top of the uncertainty is the challenge of remembering and sticking to a whole new medication schedule: Some pills are given in the morning, some at night, some several times a day. All of it is complicated by the fact that, according to Laurel, ''there's not a lot of research or data with meds and kids. It's all 'best guess.' ''
AT 5-1/2, ELIJAH ALREADY is big. Though not bulky, he is tall, strong and fast. His face has lost its soft toddler curves, and his eyes, always deeply expressive, now take on a bright focus when he's about to misbehave. Elijah's shoe size, often considered an indicator of height to come, has already reached 1-1/2, and he tips the scale at 55 pounds. To see him with his father is to glimpse the future. A burly 6-foot-1-inch, Chris can scoop up Elijah one-handed and toss him in the air effortlessly—a favorite move during swims. Imagining the tables turned, with Elijah's current propensity for aggression, is alarming to everyone.
''We already know that Elijah is going to be Chris' size, maybe bigger, and Chris' entire family is huge,'' says Laurel. ''He's 5 now, but what if he does this for five more years—or what if he does it in five more years? Always in the back of your head you think, 'What if there comes a time when I can't handle this?'
''If I knew, physically, I couldn't stop him—if he weighed 200 pounds—my responsibility is to put him someplace he couldn't do that,'' says Laurel, ''and what does that mean? A residential placement? Even the thought of that—AUGH!''
Yet that is a possibility she faced this summer during a visit to her parents' home in Pennsylvania.
No sooner had Laurel and the two children, including 7-year-old Sarah, arrived when Elijah started running around the yard, repeatedly grabbing at his 3-year-old cousin Jared. Jared, already frightened of Elijah from previous visits, was taken inside, but Elijah was on a roll.
''At one point he grabbed my mom by the head, yanked her, and threw her right on the ground,'' says Laurel. He climbed up on the picnic table and tried to jump onto Laurel's head. Later he let himself out of the locked front door and escaped down the busy street, where Laurel caught up with him trying to open a neighbor's gate.
Laurel ended up leaving the next afternoon—a day early—but not before her mother suggested that for Sarah's sake they might think about placing Elijah outside the home. ''At that point,'' Laurel admits, ''I was thinking the same thing. Not that we should, but 'What are our choices?' ''
''My comment to Laurie has been—and I have not changed my mind—'You are sacrificing three lives for one,' '' says Laurel's mother, Darla Holtzapple. ''Laurie and Chris are adults, and they make their choices. Sarah is not an adult, and this is not her choice.''
Though Laurel believes firmly in keeping the family together, she, too, worries about what it all means for Sarah. ''We've never had a normal family since the kids were 4 and 2,'' Laurel says. ''I worry that she's going to think it's appropriate for aggression to happen in a home because she grew up with it. And I worry she's going to think it's appropriate for people to be screaming and yelling at each other.''
Chris says he believes things might have gone a little more smoothly during the Pennsylvania visit if he had been there to help care for Elijah. ''He doesn't do any of this stuff with me because he knows what will happen,'' says Chris. ''He knows if he bites me I'm going to whack him on the behind.'' If Elijah is toeing the line with his father because he's afraid, ''that's OK with me,'' Chris says, ''because he also knows that I love him. I don't want him to be scared of me,'' he adds, ''but he also needs to know that there are standards.''
Holtzapple has developed her own variation of that approach. ''Elijah and I have come to an understanding: You don't do to 'Granny D' what you don't want to have done back,'' Holtzapple says.
Though they are not about to consider placing him elsewhere, the new reality of life with Elijah has triggered another round of grieving for Chris and Laurel. ''We're coming to realize that we love Elijah with all our hearts, but he's always going to have autism,'' says Chris. ''It's hit both of us pretty hard.''
Three and a half years ago, when Elijah was first diagnosed with the disorder, ''we were pretty fired up that he was going to be healed somehow,'' says Chris. ''It's sort of a shock to us to wake up and realize where we are.''
One of Chris' many moments of truth came this spring at the annual picnic for the family support program he runs at the Arc of Franklin County, a social service agency. Thirty to 40 families attended, all with developmentally delayed children, he says, and ''Elijah was the most difficult to manage, by far.'' Elijah's behavior that day so frustrated Chris that partway through the picnic he took him to a private room inside and spanked him. Though he says it helped, it might not be the choice he'd make today.
''Elijah hasn't had a spanking in a long, long, long, long time, and he probably won't, because it's a strategy that the school can't use,'' Chris says now. ''Although I think that he's really needed the consistent discipline, I think that in a sense we set the school up for failure because ... if I have a behavioral strategy at home that really, really works for me, but the school can't use it, then Elijah might be more likely to misbehave in a different setting.''
Somehow, he says, they have to find another way to halt Elijah's aggression. ''Something needs to happen to show him that behavior isn't acceptable,'' Chris says. He is thinking not only of the safety of others, but also of the quality of Elijah's life. With an adult hovering around him at all times, it's hard for Elijah to fit in naturally with his peers, Chris points out. The Peltiers also worry that the children Elijah comes in contact with will become afraid of him and begin avoiding him. And ultimately, Chris says, ''nothing will get him out of public school faster than being aggressive.''
IT'S A THURSDAY, bright and hot, Elijah's fourth day at Camp Lion Knoll in Greenfield, and his group is taking a break under a shade tree. Though Elijah has not joined in their games, he and his personal counselor, David Sharpe, have tried to play their own variations nearby. Now, as the other children talk in a circle a few yards away, Sharpe invites Elijah to do one of his favorite tricks.
Lying on his back, Sharpe props up his knees and Elijah leans back against them. Holding his shoulders, Sharpe lifts Elijah until he's almost up-ended, then flips him up and over his head. Elijah loves this and immediately runs back to Sharpe's feet to do it again. Sharpe, who is nursing an injured knee, lifts him up partway, testing the possibility. ''No. I can't do it,'' he concludes. He lowers Elijah, who in one swift motion hits the ground running, makes a beeline for a blonde girl in a red shirt squatting in the circle, and pushes her over. She falls forward on her hands and knees as Sharpe lunges out, grabbing Elijah. The connection is clear to Sharpe: Elijah was angry at not getting what he wanted. The girl is startled but unhurt and eyes Elijah with annoyance.
Elijah's behavior was so poor his first day here that Sharpe had him moved to an older group. ''With a 4-year-old, if Elijah's being aggressive they tend to not notice and get out of the way, so the consequences are much greater,'' explains Sharpe, who also worked with Elijah all last year at Shutesbury Elementary. Though Elijah actually pushed only one child that first day at camp, Sharpe says it was exhausting trying to anticipate and head off his constant aggression. Laurel says Elijah also bit Sharpe twice that week, hard enough to break the skin.
Part of the reason for enrolling Elijah at Lion Knoll, a Girls' Club camp which he attended for the first time this summer, was to give him an enjoyable experience in the midst of other children. All together, he spent three weeks there in June and August to fill the gap between his summer preschool program and the regular school year. The Shutesbury school system, which offered to send him to any camp the Peltiers selected, paid the $95-a-week fee and sent Sharpe along, as well. Elijah was accompanied by a personal aide throughout his summer program, at a total cost of just over $3,000, according to the district superintendent. Elijah's Individualized Education Plan (IEP)—the annual agreement between the school and his parents—calls for 48 weeks of services a year, with four short vacations. Having Elijah home for more than a week at a time is disastrous, Laurel says: ''If his routines are disrupted, he just dissolves into chaotic activity.''
Getting Elijah to interact positively with the children around him is not easy. Unfortunately, observes Sharpe, ''He tends to have more attention with kids if he's being aggressive. Those times he can very much pinpoint a target.''
After the pushing incident, Sharpe leads Elijah to the playground for a bit of quiet time. Elijah promptly climbs a pile of tires chained in a mini-pyramid and seats himself, Buddha-like, on the topmost one. After a few minutes, the rest of his group runs over for their own playground time. Then a group of older children appears, running down the hill from the main hall.
Elijah rests his head on the tire, closing his eyes with fatigue. Some of the older—children eye him with curiosity. In response to one child's question Sharpe explains that Elijah learns differently and communicates differently from other children. ''He d'sn't talk with words; he talks with pictures,'' Sharpe says. He pulls Elijah's red icon notebook from his backpack, and opens it to illustrate. Soon Sharpe is surrounded by more than a half-dozen kids, peering over one another's shoulders for a look.
''Can we go near him?'' one asks. When Sharpe says yes, the group flows to the tire pile, where the children gather around Elijah, examining him as if he were an exotic animal. For his part, Elijah seems too tired to notice. He is still resting his head on the tire, sometimes banging his teeth on it, sometimes closing his eyes, sometimes glancing at the sky disinterestedly. ''Can he read lips?'' a child asks. ''He can hear just fine. It's not a problem of hearing,'' Sharpe answers. ''I don't know what he can do in his mind,'' he says, in response to another question. ''The best way to get a sense is from people who have autism who have grown up and learned to talk and written books. Oftentimes they feel as though they're trapped inside a cage.''
Gradually the children lose interest and wander off. Elijah climbs down from the tire pile and, with Sharpe close behind, makes his way up to a small, wooded hillside. He and Sharpe sit on the soft pine needles.
Cody, a boy from the youngest group who met Elijah his first day here, joins them. Sharpe says Cody has tried in a kind, quiet way to befriend Elijah. He will often come and sit with them or invite Elijah to play. Once he invited Elijah to pick blueberries, Sharpe says. When Elijah declined, Cody and a friend picked them, then brought some back for Elijah. Elijah ''smelled them and threw them,'' Sharpe says, but Cody wasn't offended.
Elijah is chewing on pine needles now, and it gets Cody wondering: ''What does he eat?'' The same things you eat, Sharpe tells him. ''He likes cheese. He likes Jell-O.'' ''Oooh, that's my favorite!'' Cody interjects. ''He likes pizza,'' Sharpe adds. ''Aw, I love pizza!'' Cody exclaims.
ELIJAH IS SITTING AT a small, round table in the Shutesbury preschool room, eating a snack with his teacher, Susan Giordano, and four of his classmates. There are cupcakes today, as a special treat for one student's birthday. As Elijah lowers his mouth onto his piece, Giordano opens his icon book and points to some pictures. ''Look,'' she says. ''Eat—cake—juice.'' He d'sn't respond. A few minutes later she tries again, leaving the last word up to him. ''You're eating a ...'' she says. This gets him interested. ''Bagel,'' he points to. Giordano exclaims in feigned disbelief and repeats the question. He repeats his joke. ''Bagel,'' he answers again, grinning.
Now Giordano brings the other children into the exchange. ''He keeps pointing to bagel!'' she announces, to a chorus of appreciative giggles. This is classic preschooler silliness, and a chance to help Elijah connect with his peers. Encouraged by the response, Elijah turns to the book again. ''I—want help—with the swing?!'' Giordano reads as he points out the icons. ''He's telling jokes again!'' she says, to delighted laughter.
While such interactions are filtered through adults now, the goal is to build a foundation for the relationships Elijah may eventually have on his own.
There has been a sea change in relations between the Peltiers and the Shutesbury schools over the past year, thanks largely to the arrival of Giordano, who is well trained in dealing with special needs in general and autism in particular. After teaching the preschool's summer session last year, Giordano was hired as Shutesbury's new early childhood coordinator and preschool and kindergarten special education teacher. She also continued to teach the preschool last year, but will hand off that task this year to spend more time with Elijah in the kindergarten room.
''The immediate change that summer when Sue came was that she wanted (Elijah) included,'' says Laurel. ''It was Sue spending 10, 15, 20 hours a week—more than that, maybe—making icons, adapting her classroom so that Elijah, who couldn't speak, might, maybe, perhaps be able to communicate by looking at pictures.
''Having her there 40 hours a week to build a team out of all the people who are there—that's made all the difference in the world,'' says Laurel.
As was the case last year, a staff member works one-on-one with Elijah at all times at school. The responsibility this past year was shared by Giordano and a handful of aides, many of whom also work with other children at the school. One of the Peltiers' main concerns in the past had been the level of training among the many people working with Elijah. They had struggled with Shutesbury administrators over the need for more expert consultation and for several months had arranged for their own educational consultant to come in and work with Elijah's team members. All that served only to create more tension between the school and the Peltiers, however, and ultimately the consultant was dropped.
''When they hired Sue, we no longer felt we needed a consultant. ... She's proved to be a very strong advocate for Elijah,'' says Chris. ''I think what we have is trust—that she's going to do the right thing for Elijah, so we don't feel like we have to be quite as hyper-vigilant as we were.''
Chris and Laurel say Elijah has made tremendous strides in one of Giordano's main area of focus: communication. Though he still cannot speak, his ability to use picture icons has become quite sophisticated. He now puts together four- and five-word sentences using his notebook. ''Last night he brought me a fruit roll-up,'' Laurel says. ''I said, 'What do you want?' He got his book out and so fast: 'you—open.' '' She found his choice of icons—including the correct verb and pronoun—remarkable. ''He went from pointing to 'fruit roll-up' to 'I—want—fruit roll-up,' to being able to distinguish between 'he,' 'she,' 'you,' 'me' and do it with the right icon,'' she observes.
The Peltiers are so pleased with Elijah's program that this spring they nominated his entire team at Shutesbury Elementary—including Giordano and Principal Laura Baker—for The Coalition for Educational Advocacy's annual Excellence in Inclusive Education Award. Based on their praise, the team was one of five nominees singled out for special recognition in the state Department of Mental Retardation's western region, says Sylvia Cuomo, coalition coordinator. It's a marked change from the threatening legal letters the school was receiving from the Peltiers last year.
The Peltiers say they were motivated not just by what they've seen with Elijah, but by the way Shutesbury has passed the services on to other children.
''What I see in many schools is that a child like Elijah comes through with parents who are very proactive, and the services happen almost like a boat going through the water,'' says Laurel, who's gotten an inside look at scores of school systems through her work with other special-needs children. ''The kid gets everything—he's riding high on the hog—and the wake comes and it closes right in behind him, and so all the kids who come behind don't receive those services. They're not offered. They're not shared. The experience is not shared.''
In Shutesbury, Laurel says, Elijah ''has been the one who's broken through, and all the kids that come behind him are now benefiting from the training, the services, the staff that were initially brought in to serve him. And that's purely, one hundred percent, the choice of the administration in Shutesbury.''
Elijah's program remains costly. Superintendent of Schools Leonard Lubinsky says he thinks the price tag is still in the $30,000 range. But, he says, ''What's positive about where things are is that his experience is so integrated into the school that it would be a substantial and complicated process to actually find out exactly how much it costs.''
THE PELTIERS' NEW confidence in the school system has allowed them to shift their focus away from Elijah's day-to-day program to other areas of their lives. Both Laurel and Chris have built on the experiences of the past three years in their professional lives—becoming strong advocates for people with special needs.
As part of his job at the Arc of Franklin County, where he directs the family support program, Chris has been working to establish minimum statewide standards for the financial support of families with developmentally delayed members. He also spoke out this winter about proposed changes to Chapter 766, the state law governing special education funding. Chris lobbied for an increase in state funding for mandated special ed services and opposed a plan to replace the phrase guaranteeing special-needs students the ''maximum feasible benefit'' with an assurance of ''free and appropriate'' services. He made countless phone calls, traveled to the statehouse in Boston, wrote op ed pieces, letters to the editor and letters to legislators, and organized a legislative breakfast at which Laurel spoke.
Laurel now puts in 15 hours a week for the Association for Community Living in Springfield, where she recruits families and individuals to serve as companions for, provide respite care for, or share their homes with handicapped clients, and 20 hours a week for the Arc of Franklin County and the Greenfield Public Schools, where she is in charge of a new program for which Chris wrote the grant. Laurel says her task there has been to do ''creative problem solving'' with several hand-picked special-needs students, finding ways to include them as much as possible in the regular curriculum and in the school community, and support their personal, academic and vocational goals. The effort has been such a success that the school system is paying to continue it for another year.
Laurel is now doing all her work on a freelance basis, so while she still must travel several days a week, much of her work is done at home and she can arrange her own schedule. These days, she says, ''work is rest.''
Many of the changes the Peltiers have made over the past year have been about restoring balance to their lives. While they both continue to look into new approaches that could help Elijah, their efforts no longer have the panicked urgency that marked the early years of his diagnosis. Laurel says she's been thinking about getting on the Internet to see what she can drum up about his new habit of banging his teeth and hitting his head, for example, ''but, jeez,'' she says, ''it's just one thing; I could get on the Internet about a hundred things. I'm at the point where I'm like—look, I don't need anything more to do.''
Chris and Laurel convinced Sarah in February that it was time to give away their hound dog, Patches, to a family where she wouldn't be subjected to so much squeezing and pounding. (''Elijah d'sn't know how to love her,'' Sarah says. ''He thinks loving is hurting.'') Patches was replaced with a pair of ferrets, who can be caged out of reach when Elijah gets too rough.
And this past winter Chris and Laurel even did the unthinkable: They took a weeklong vacation without the children. On an impulse, Laurel made a down payment on a Caribbean cruise for Chris' birthday last October. Though she says Chris was upset about the money they were spending, and both of them were nervous about leaving the kids, they went through with the trip in January. It was so liberating they came back and went away for two more weekends alone.
Finding competent sitters to care for Sarah and Elijah has always been difficult and costly. They pay up to $10 an hour for the privilege of a little time off, Laurel says. For the cruise, they hired two college students who had worked in the Sunday School room at the First Baptist Church of Amherst, which the Peltiers attend. ''It did not go well,'' says Laurel, who says the sitters felt overwhelmed. Still, she convinced Chris to refrain from calling during the trip. ''I said, 'What are we going to do? We're in the Bahamas.' ''
Their life improved dramatically later that winter when they found Leanne Driver, a 19-year-old University of Massachusetts student from Northfield, and her brother Marc, 17, both of whom had experience—and patience—working with special-needs children. Both have left the area for the coming school year, however, putting the Peltiers back at square one.
WHEN THINGS WERE AT their worst this spring, Laurel and Chris applied for a special package of family support from the state Department of Mental Retardation (DMR). Aimed at preventing kids from being moved out of their homes, it would provide money for behavioral consultation, as well as afternoon and evening respite care for Elijah. While they are still waiting to hear on that request, they have put their professional experience in special needs to good use obtaining other financial support for Elijah.
A year and a half ago, they received $1,000 in grant money from DMR for a fence for their yard to cut down on Elijah's escapes. Last year they were awarded almost $1,500 through the same program for a host of occupational therapy equipment to be used at home, at school and at church, including a swing set installed in the Peltiers' newly fenced yard.
A third grant for over $400 last year from the Carousel Trust Fund, also administered by DMR, paid for home computer equipment that allows Elijah to play games by touching the screen.
AS HAPPY AS THEY ARE with Elijah's school program, Chris and Laurel are nervous about how it will hold up as he moves out of preschool. This month he begins kindergarten, and he is expected to keep progressing through the grade levels along with his peers.
''We're scared, but all for it,'' says Laurel. ''Regardless of his academic ability, if we put him with younger kids, socially, emotionally, what can he do? And socially, emotionally, we won't know what to expect of him because we won't have any models.''
While the ultimate decision will be made each year at a team meeting, ''It's certainly my belief and understanding that he stays with his peers,'' says Shutesbury Principal Laura Baker.
''My primary concern is inclusion,'' says Laurel. ''Is Elijah being included—when and how? What is this inclusion doing, not just for Elijah, but for the entire class? Is it being used effectively or is it becoming a barrier to people learning? Those are my questions.
''Kindergarten is a nice segue, but the truth is he is going into a much more academically based environment starting in first grade,'' she says. ''My question is, how are they going to now, given Elijah, make his inclusion something that is meaningful to him and to the other children, and also deliver the academic services?
''If it comes right down to it,'' Laurel admits, ''it's much more important for the kids to be safe, to feel like they're in a safe environment at school, than it is for Elijah to be part of them.''
In an effort to work through her concerns, and better integrate the school and home portions of his program, Laurel plans to spend as much time as she can in Elijah's classroom this year. ''We wrote in the IEP that I would be there once a week,'' she says, ''but I'm going to try to go as often as I can. I'd like to go every day, or at least three or four times a week, at least for part of the day—a couple, three, four hours.''
One of the greatest stumbling blocks continues to be Elijah's lack of speech. ''I often think, what would it be like if I couldn't tell anyone anything except big, generality kind of deals, like 'I have to pee,' '' says Laurel. ''I would be, like, ready to kill someone. It's no wonder that he gets frustrated at things that don't seem to us to be reasonable, because there is just no way for him to express not only his needs but his thoughts.
''We just don't have icons for everything he wants to say to us, and we don't always have icons for specifics, because he knows specifics,'' Laurel adds. ''It's not just, 'I want candy.' Now it's 'I want red gummy fish and not purple Bubble Yum,' and he has no way to tell us that. And that's true about every single thing in his life.''
Still, Elijah's icon book has evolved impressively over the past year. It now includes hundreds of symbols, among them such emotions as ''I like that,'' ''I don't like that,'' ''funny,'' ''sad,'' ''tired'' and ''mad.'' While it is a big step forward, Laurel hopes ultimately to move him into some communication method that is simpler for the average person to understand.
She is hoping that he will be able to learn to read and write. His icons already have turned in that direction: with the pictures smaller and the print bigger. ''We don't know if there's a way to teach him the alphabet and build his vocabulary and teach him sentence structure.'' His inability to speak is ''a huge mystery,'' she says. ''Is it that he can't hear the differences between sounds, between a 'K' and a 'P'? If that's the case, how are we going to teach him a communication system that's based on phonetics?'' Still, she says, ''I want, personally, to start with seeing how far he can go. ... I'm pretty sure I can teach him to type.''
Principal Laura Baker is optimistic about Elijah's skills. ''I think he'll learn to read,'' she says. ''I think that hits his strength'' in dealing with things visually. ''There are many ways to teach reading,'' Baker adds. ''I think you've got to go with the belief that it can happen.''
The Peltiers are talking about so-called augmentative communication systems, which ''speak'' when the user types in words or presses icons. Laurel also is thinking about exploring a method called ''cued speech'' as a bridge to help Elijah learn to form words. Used with the deaf, she says, it involves modeling phonetics with eight finger symbols placed in four different positions on the face.
But all of his progress is dependent on keeping him calm enough to settle down and learn. Laurel believes that ultimately the key to controlling Elijah's behavior rests with his classmates.
''My hope is that when he gets into kindergarten we can start looking at using peer support,'' she says. ''The kids have to be trained how to handle him, how to be around him, and how to provide direction in an appropriate way that fits with the school's discipline code but that also meets his needs, because there is no way that adult intervention is ever going to be a preventative measure for him.''
In order to truly end Elijah's lashing out, Laurel says, ''He just needs to be around people who can hold him accountable often enough, and in a way that he likes enough, so that he learns not to do it.''
Copyright © 1998 Charlotte Meryman