Once frantic to find a cure for their autistic son, Laurel and Chris Peltier now are trying to create
A Place for Elijah
Hampshire Life/Daily Hampshire Gazette
June 17, 2005
When photographer Carol Lollis and I first met Chris and Laurel Peltier nine and a half years ago, they were frantic. Their son, Elijah, 2-1/2, had just been diagnosed with autism—a severe brain disorder that interferes with his ability to learn, communicate and form relationships. Laurel had quit her job as a writing teacher at Greenfield Community College in Massachusetts' Pioneer Valley to oversee his care full time and had transformed their Shutesbury home into a command post from which she spent hours contacting anyone who might help them find a treatment that could reach him.
"I was scared out of my mind," she recalled later. ''I was desperate and I was calling lots of people. I was calling doctors and therapists and consultants all over the country, so why not call the Daily Hampshire Gazette?''
That phone call led to an article in the paper's Living section in November 1995. The story described Elijah, and his parents' efforts to convince the Shutesbury school system to provide him with an intensive $30,000-a-year behavior modification program known as Lovaas.
Their efforts succeeded. And after that first story appeared, the Peltiers agreed to let us follow them through what they believed would be a critical phase of Elijah's life. With one study showing that half of those enrolled in the Lovaas program before age 4 were functioning as well as their peers by age 7, the Peltiers believed these would be the years in which their son would be cured. Instead, they turned out to be the years in which they were forced to come to grips with the depth of their son's disability. It was a wrenching process, and it almost tore them apart.
Our pieces ran annually in Hampshire Life from 1996 to 1998. When the last installment was published, the Peltiers were still very much a family in crisis. At 5-1/2, Elijah was not yet speaking, and his behavior was often aggressive and unpredictable. At school and summer camp, he was accompanied full time by a one-on-one aide who helped him through the day and worked constantly to keep his impulses in check. At home, that exhausting job fell to his parents, and they were finding it harder and harder to keep up, never mind make time for themselves and their 7-year-old daughter, Sarah. Laurel's mother was suggesting they place Elijah in residential care, and the Peltiers were terrified of what the future might hold.
Yet there were glimmers of hope. Elijah was just beginning kindergarten at Shutesbury Elementary School and a strong educational team had been assembled to support him. He had begun using picture icons and sign language to communicate, and Laurel was eager to involve his peers in his program, believing that ultimately they held the key to his success.
While the one-on-one support continued, the Lovaas approach was eventually replaced with other techniques that built on Elijah's strengths by using visual cues to teach him to speak and read.
In January 1999, overwhelmed by family and marital pressures, Laurel moved out of the house but remained involved in her children's care. The following summer, she moved back in. It was a dark period for all of them. ''I think we had gotten to a place where there was no way back except through that,'' says Chris.
''I'm really grateful to have had the chance to go away and to have had the chance to come back,'' says Laurel. ''Coming back, things are entirely different. Even when we disagree, our marriage is not even questioned.''
This spring, more than six years after our last visit, we returned to the Peltiers to find Elijah on the verge of adolescence and his family again on the cusp of change.
• • • • •
TWELVE-YEAR-OLD Elijah Peltier is suspended in a cloth swing just off the floor of the occupational therapy space at Shutesbury Elementary School, his bulky frame visible only as lumps and bumps inside a giant swath of red fabric. His body is curled in a semi-fetal position, and his face barely pokes out from one end, his teeth lightly closed around the edge of the cloth. A thick rope runs from the top of the swing down to one side, where fellow sixth-grader Kira Gallagher is gently pulling it. She tugs slowly, repeatedly, keeping the swing in motion. Elijah is quiet and peaceful, and as he relaxes, he stretches out his body the length of the fabric.
''You can stand up when your swing is all done,'' offers his longtime aide, Laurel Facey, who is supervising from the sidelines. ''I'm going to start the marching music, OK?''
On cue, Elijah climbs out of the swing and takes his place beside Kira as the music begins. Though at 5 feet 4 inches tall he is shorter than she, at 180 pounds he dwarfs her slim build. ''Come on, Elijah, we're going to go marching,'' Kira coaxes softly.
It's Kira's turn today to work with Elijah during this half-hour therapy session. Because his autism makes it hard for him to stay focused and follow directions, his classmates volunteer to spend time with him, as their schedules allow, throughout the school day. Whether the job is leading him in physical exercises, joining speech-therapy games or guiding him through a class presentation or outing, there is never a shortage of volunteers, says Patty Klein, who has been his classroom teacher for two years.
''Watching the kids work with him, I think, has for me been one of the most powerful parts of this experience,'' says Klein.
KIRA AND LAUREL Facey march—and Elijah shuffles—around the swing for a few minutes, and then Facey leads the children in more exercises. ''Good job, Elijah, good job,'' says Kira when they have finished. Facey hands Elijah the CD of marching music and he follows Kira out the door. As they walk side by side through the hall, Elijah casts a mischievous smile her way, reaches over and takes her hand briefly, then looks back to see if Facey is following.
Touching is a big issue for Elijah—and for everyone who comes in contact with him.
In his constant search for sensory stimulation, he frequently reaches toward others' faces, arms and hands. A math, reading or writing session with Facey or his special education teacher, Renee Richard, for example, is generally punctuated by frequent reminders of ''no touching'' or ''gentle.'' Or, the teachers will simply lean away without comment. His peers have been taught to do the same. ''They take no nonsense from him,'' Elijah's father, Chris Peltier, says of the girls in his class. Nevertheless, says his mother, Laurel Peltier, ''I think that [in the past] the school would have said that there were some issues.''
For several years Elijah's teachers have been working with him to distinguish between public and private behavior and to learn appropriate boundaries for family members, friends, paid staff and strangers. As Elijah nears adolescence, his parents are keeping a closer eye than ever on him. ''We're totally nervous about that—what's the whole sexuality piece going to look like,'' says Chris.
''He likes girls, he definitely does,'' acknowledges Laurel.
AND THEY LIKE HIM, if not in the same way.
This year, all 13 sixth-graders are in one classroom, along with a handful of fifth-graders. Last year, they were split between two mixed-age classes, and Kenna Tyrrell, 12, says she was disappointed not to be with Elijah. ''I've been with Elijah for a really long time and he's one of my friends,'' she says. ''The year was definitely different. I missed him, and I didn't get a lot of time to be with him.''
Kira Gallagher expresses similar sentiments. ''I feel proud of him when I help him,'' she says. ''I like it when we do things he's good at because it's nice to see him not struggling with stuff because he struggles with lots of stuff.''
On their way back from his exercise session, Elijah and Kira pass through hallways lined with brightly colored displays of student work. Near their classroom, posters detail life in ancient Greece. Among them are several by Elijah. One features a cutout illustration of a goddess on a hand-painted background, surrounded by stickers of all sorts of animals. ''Gaea is the Goddess of the Earth,'' reads the typed text at the bottom. ''She is a woman. In my picture she is in water. She looks after fish, birds, lions, elephants, giraffes, dogs and all the animals. She feeds the animals food. She protects the camels, the pink flamingos, and the blue sky. She is the mother of all things.'' Below it ''ELIJAH'' is handwritten in big, crooked letters.
Such a project represents hours of painstaking work, says Renee Richard. For this one, for example, Elijah painted the background with hand-over-hand help, chose stickers to illustrate it, and created the text with assistance from a computer program called CoWriter, which predicts words based on just a couple of letters. Richard began by asking him simple questions. He typed his mostly single-word answers into the program, and Richard then helped him build sentences around them.
Throughout his school day, Elijah is always in the company of an adult who is focused solely on helping him. It might be Facey or Richard, or speech therapist Andrea Elson, or occupational therapist Michele LaPierre, or his new afternoon aide, Emily Swartz. His full educational team, which also includes Klein and inclusion consultant Pat Donahue, meets every week for an hour to plan his involvement in curriculum units and other class activities.
His program is not cheap. Last year Elijah was one of two Shutesbury children with high enough expenses to trigger the state ''circuit breaker'' law, which partially reimburses districts for the cost of special needs services. According to figures available on the state Department of Education Web site, services for the two students totaled $128,000, of which the state paid just under $28,000. The Peltiers, who say well over half of that total is spent on Elijah, have always been acutely aware of the financial burden educating their son places on their town. But they are convinced that everything spent on him now will reduce what he takes from society in the future.
Elijah is now reading at a first-grade level and writing at close to that, says Richard. This year he learned lower-case letters. In math, he is working on simple addition, telling time to the half-hour, and distinguishing between quarters and nickels. Though he can talk, it still is hard for him to properly articulate many sounds.
After weeks of preparation this spring, Elijah participated in both an an evening school concert and the traditional spaghetti supper hosted for the community by the sixth grade. At the concert, he joined his classmates onstage and, with prompting from some of the others, gestured along with several songs. He even sang a one-line duet with Kira. At the supper, with the help of a fellow student, Elijah waited on one of the tables, taking orders and serving the food.
Such efforts are what has made his elementary school experience successful, says Laurel. ''Shutesbury has just risen to the occasion,'' she says. ''His peers, the kids in the building, the guy who runs the kitchen, the custodian—people are just very, very supportive of him.''
But the question now is how will he fare once he leaves Shutesbury's nurturing confines.
Tonight, he and the rest of the sixth grade will graduate from elementary school. Most of his classmates will go on to Amherst Regional Middle School, which serves more than 600 students from four towns. Whether Elijah will join them there is yet to be decided.
His mother's worries about how he will fit in at the middle school led her this spring to a conclusion that surprised everyone, including herself.
THIS WINTER LAUREL cut her job back from full time to part time in part to prepare for Elijah's transition to seventh grade. Like Chris, she works at the United Arc of Franklin and Hampshire Counties, which provides services for people with developmental disabilities.
Over the past few months, she and other members of Elijah's educational team have visited several potential programs, including Amherst Regional, and Laurel has assembled the information they gathered into a thick spiral-bound book. In the end, after years of working for full inclusion at Shutesbury, Laurel found herself lobbying for the School-to-Farm Transition Program at Hampshire College in Amherst, a program that provides academics but focuses on other life skills.
Created through a partnership with the South Hadley public schools, it serves a maximum of five students—high school-age teens and others up to age 22—all with special needs. In addition to individualized tutoring, they work on the farm and on the college campus, enhancing both work and social skills. Elijah spent six weeks at the School-to-Farm camp last summer and plans to attend this year for seven weeks.
Laurel says one reason she set her sights on School-to-Farm is her concern that at Amherst Regional Elijah will end up in large classes and minimally supervised settings, such as lunch and recess, that could trigger his aggression. Given his size, he has the potential to be intimidating—or worse. ''One incident where Elijah is having a really bad day and a kid he doesn't know very well gets in the way—that could shape his whole life,'' says Laurel. ''My fear is he'll be in a situation that doesn't work for him and he'll come out with a really bad reputation.''
Both she and Chris are equally worried Elijah will spend his days in a resource room isolated from other students.
Still, Chris thinks his son should remain in a school setting where he will continue to focus mainly on reading, writing and speaking—and being around his classmates from Shutesbury. That view is shared by Frank Robbins, an educational consultant from Amherst who has worked with the family since the early days of Elijah's diagnosis.
Laurel readily admits that another reason for her passion for School-to-Farm is her reluctance to fight the inclusion battle all over again at Amherst Regional. Getting an effective program set up at the middle school, Chris acknowledges, would require a return on their part to the exhausting ''super-psycho vigilant parent'' mode of Elijah's early years. While they all agree School-to-Farm would be a good placement for Elijah at some point, Laurel is no longer pushing for it exclusively. Now they are asking that if he attends Amherst Regional, he spend at least part of each day off the school grounds, learning to function in the larger community.
While arrangements are still being negotiated, classmate Kenna Tyrrell says she can imagine Elijah in middle school, though, she says, ''He'll need a lot of friends to help him along the way, to help support him and guide him like we did all the years before.'' Kira Gallagher agrees. ''I can picture him with somebody else and somebody helping him through classes,'' she says, ''but I think it's going to be harder because he has more than one teacher.''
Students at Amherst Regional are divided into seven groups, and Kira says she's been asked if she would be willing to be placed with Elijah. ''I wouldn't mind that at all,'' she says. "I'd like to continue being his friend.''
The fact that Laurel has focused on the School-to-Farm program also has a lot to do with an indisputable fact: Animals are one of the strongest connections in Elijah's life.
THE FAMILY HAS JUST finished dinner—takeout subs and pizza—on a recent Tuesday evening. Before heading out to a meeting at their church, Laurel lets Elijah know it's time to feed the family's dogs, Link and Salsa. ''Get the bowl,'' she urges. ''Elijah, get the red bowl.''
As Elijah fills the dish with dry dog food, Laurel places more in a second one and hands it to him. He sets both bowls on the floor and lies down beside them. Link, his sister's Alaskan Malamute puppy, comes right over. Elijah pulls a handful of kibbles out of one dish and holds it under the dog's nose, watching intently as Link delicately takes it from his palm. He repeats this process several times, then switches to laying the pellets out on the floor a few at a time, replacing them as the puppy licks them up. Link is now hunkered down on his belly and Elijah's large body is stretched out beside him, his head resting on his folded arm, his face inches from the dog's chewing teeth.
When Link loses interest, Elijah whines softly and the puppy accepts a few more kibbles before padding away. Their 4-year-old Lab-Chesapeake mix, Salsa, promptly takes Link's place, and the whole process begins again.
Elijah, who also takes horseback riding lessons once a week, spends a lot of time with the dogs, say his parents. Occasionally he'll pet the animals or throw balls for them, but feeding is definitely the highlight. ''He loves to watch their mouths when they eat,'' Laurel says. His weekend respite care provider, who also has two dogs, says Elijah enjoys the crunching sound when they chew. ''He's got a multisensory approach to life,'' observes Chris.
And sometimes he gets a little carried away. Elijah has been known to take a package of chicken or $8-a-pound ham from the refrigerator and offer it to the dogs. ''When he doesn't know where something is or there's no dog food, or if there's no routine, then it's a free-for-all,'' says Laurel. But, she adds brightly, ''the animals aren't afraid of him.''
The Peltiers have to be careful about the pets they choose, though. Elijah's movements can be erratic, Laurel notes, including sudden bursts of running and stomping that could trigger an aggressive reaction from a dominant dog. When they decided this winter to let their 14-year-old daughter, Sarah, get the puppy she was begging for, Laurel drove to Worthington to check out the litter first. ''We stayed for a couple of hours, and this dog was a total wimp so I said OK,'' she recalls.
Elijah, who is listening to this conversation from his spot on the floor, suddenly pipes up. ''I need elephant,'' he says, clasping his hands together and bending forward excitedly. ''No, you do not need an elephant,'' respond Chris and Laurel in unison.
FINALLY FINISHED feeding Salsa, Elijah walks over to a nearby bookshelf and comes back with ''A Trip to the Zoo.'' He sits down next to Laurel, who helps him read the book out loud, word by word. While he reads, his leg jiggles nonstop under the table. ''Zebras,'' he says, taking Laurel's finger and placing it on a picture. ''Show me, where does it say 'zebra' '' she asks. He runs his finger along the words. She repeats the question several times until finally he locates it. ''Those are my zebras,'' he says. ''Those are not your zebras!'' she responds, grinning. ''I am a sea lion,'' he says. ''You are not a sea lion!'' she says, and Elijah laughs gleefully. ''I am a walrus,'' he tells her. This time she agrees. ''You're a walrus!'' she says, shaking her head.
''Elijah gets in moods where he'll just find little things to do to get you to laugh or have a reaction,'' says Chris.
After Laurel and Sarah leave—Laurel to her meeting, Sarah to a piano lesson—Elijah sits at the kitchen table, picking at a wart on Chris's finger, then patting his father's upturned hand rhythmically. ''I—need—it,'' he says, speaking one word with each pat. ''You—don't—need—it,'' Chris responds, patting back. ''Eee, eee,'' whines Elijah. ''No 'eee, eee,' '' chides Chris. Elijah stands up: ''Blue bed?'' he asks. ''No blue bed. Blue bed later,'' says Chris.
The blue bed is Chris and Laurel's, and Elijah finds it comforting to lie down there, but letting him do so now could interfere with his nighttime sleep, says Chris. When Elijah was younger, his night wakings were stressful for the family, as he had to be watched every moment. Now, says Chris, Elijah mostly sleeps through the night, and when he does wake, usually at 5 or 5:30 in the morning, his activities are predictable. He likes running baths for himself. ''He's got a bunch of buckets and bottles he likes to fill,'' says Chris. Several years ago, after he flooded the bathroom repeatedly, including two times when water came through the kitchen ceiling, they removed the stopper from the tub. Now he can bathe without supervision—with a few exceptions.
''For a while he was taking all kinds of weird things in the tub with him,'' recalls Chris. ''One time he took a whole bottle of blue paint in the tub. Laurel called me: 'Chris, I need help! He's blue!' I thought he wasn't breathing and I went running up the stairs, and he'd painted himself.''
Elijah has gone to the basement now and after a few minutes Chris heads down to find him stretched out on the couch in the dark family room. ''Hey, no sleeping!'' he tells him. He directs his son back upstairs. ''I need blue bed,'' says Elijah. ''You don't need a blue bed,'' says Chris affectionately.
THOUGH ELIJAH IS restless this evening, he is calm. It's a far cry from a few years ago, when his agitation often boiled over into screaming, biting, scratching, hitting and escaping every chance he got. The change is due in no small part to medication, say Chris and Laurel. After trying diet changes and supplements, his parents began experimenting with antidepressants, anti-anxiety medication and Ritalin, used to treat attention deficit hyperactivity disorder (ADHD), when Elijah was 4. For several years, they kept his aggression in check by rotating between Zoloft and Paxil, antidepressants similar to Prozac. Finally, when he hit Sarah and tried to throw her down the stairs, says Laurel, they reluctantly put him on a small amount of Risperdal, an antipsychotic, just before he turned 8.
''It's night and day for him,'' says Chris. ''With it, he's able to sit for five minutes. Without it, he's pretty driven, he's off-key, he's just not content.'' Over the years, they have gradually added and increased doses to keep his behavior in check. He also still takes Paxil each morning in a dose that recently was doubled.
The Peltiers are worried now about how the onset of puberty may affect his mood and his response to medication—something they've witnessed with other teens with special needs. Laurel says she's frequently seen such children become more anxious and aggressive around age 13 or 14.
And the Risperdal is not without side effects, including weight gain. Before he started on the drug, Elijah was lean and lithe; now he is big and beefy. Chris says they've tried to switch him to another medication, but nothing else was as effective. Elijah loves to eat, and reining in his appetite is not easy. ''I almost always choose the path of least resistance—the food versus the tantrum,'' admits Chris.
The Peltiers first turned to medication at the end of a devastating year. ''He was really aggressive and not sleeping. I look back, I have no idea how we did it,'' says Laurel. ''He couldn't be out of your sight. If he was awake, you had to be awake in the room with him. His teachers got hurt. He bit people. He punched people.''
Around the same time, they applied in desperation for a state grant aimed at keeping kids out of residential care. That funding—$32,000 a year from the state Department of Education, administered through the Department of Mental Retardation—proved pivotal. With it, the Peltiers hired a respite-care provider to take Elijah on weekends and some school vacation days. ''The reality is Elijah is not a kid who's ever going to live without care,'' says Laurel. ''We have to prepare him for the reality of his adult life, and that involves care from multiple people. Nobody's going to spend 24/7 with him.''
The Peltiers are still receiving the annual award—now reduced to $28,000—and over the years Elijah has developed a deep connection with his respite provider and her family. Carol, who asked that her last name not be used, picks Elijah up every Friday after school and keeps him until Saturday evening, Sunday morning, or sometimes late Sunday afternoon, depending on the Peltiers' plans for the weekend.
''I think it was key in giving us some flexibility, some time to focus on Sarah, some time to be together as a couple,'' says Chris. ''It was really good for Elijah and it was really good for us.''
''Our goal is interdependence,'' says Laurel. ''We shot for independence early on, but once we realized the extent of his autism, in second or third grade, we shifted.''
CHRIS AND LAUREL'S vision of a meaningful future for Elijah is still evolving and they say they are determined to do whatever it takes to help him succeed—including possibly buying a farm and creating a small community that can support him. They have begun looking at real estate in the area and are in the process of visiting other communities already in existence in western Massachusetts, New Hampshire and Ohio. Some are specifically geared toward people with autism. They also have been talking for some time with another family from their church about the meaning of community and have come to believe that ideally whatever they establish should be faith-based. The Peltiers have been active members of the First Baptist Church of Amherst for a dozen years, teaching Sunday school and serving on a variety of boards and committees. The church community is central in their lives, and they would like to integrate Elijah more fully into it as he nears adulthood.
In addition to preparing Elijah for the rest of his life, the Peltiers also are preparing Sarah for hers. ''She's learned very clearly what the pattern of her adult support for Elijah can be—that she doesn't have to feel guilty and she doesn't have to be the one available to him'' all the time, says Laurel. ''She can pick and choose activities [to do with] him and pick activities for herself to keep herself healthy.''
Sarah shrugs when asked about her future responsibilities toward her brother. At 14, it's not a subject she's given much thought to. Tall and soft-spoken like her dad, with shaggy dark hair that falls loosely across her face, Sarah sports a typical teenage air of casual indifference. The early days of jealousy have passed, and she and Elijah now seem to lead mostly separate lives. Sometimes they watch movies together, she says. ''We usually switch off,'' she explains. ''We'll watch, like, two or three Winnie the Pooh movies, then we'll watch what he terms a 'Daddy movie.' ''
Elijah is generally at respite care when Sarah's friends come over, but if he's not, it doesn't matter, she says, noting, ''He doesn't usually get interested in people who come to the house.'' There was one morning this year, however, that she and a friend woke from their basement sleepover to find Elijah sitting on the girl, who had never met him before. ''She thought it was hysterical,'' Sarah says, laughing at the memory. If she thinks of it, Sarah says, she tells new friends about Elijah in advance. ''I just explain that his brain works differently—that part of his brain doesn't let him talk and he just asks for things differently,'' she says. But if she forgets, she doesn't sweat it. ''I figure if they can't deal with that they shouldn't be coming to my house.''
Elijah's classmate Kira Gallagher remembers what it was like for her getting to know him after she moved to Shutesbury in third grade. ''I wasn't sure how to act around him,'' she recalls. ''I wasn't sure how to talk to him.'' Her advice to others now? ''Talk to him in a normal voice and try to understand him as best as you can. ... Try being patient sometimes and understand that he's doing his best.
''Some people may take a first look and get the wrong idea,'' she adds, but ''he's mostly just another kid like us.''
Copyright © 2005 Charlotte Meryman