Graeme Rush can't count or understand the alphabet, and speaks less than 10 words, but he attends a regular Grade 2 class. Is mainstreaming of extreme special needs kids the best way for him--and his schoolmates--to learn? Deborah Jones takes an inside look at one of the hottest issues in education
Published: Chatelaine, October 1995
By Deborah Jones
On Friday morning, Graeme Rush arrives at school in tears. Is he upset because his parents and big sister said good-bye at breakfast before their weekend of respite, which Graeme will spend at a hostel? Is the cause a sock twisted in his boot, or a ray of sun in his eye? Nobody knows. Unlike his "normal" classmates at Vancouver's Queen Elizabeth Elementary School, Graeme can't explain his distress.
Graeme is blessed with green eyes, perfect skin, a sweet nature, a rare blaze of a smile. And Graeme is autistic. Somehow, sometime, the wiring in his brain went seriously awry. At age 8, he has a vocabulary of fewer than 10 words, can't guide a pencil alone, can't reliably use a toilet. He can't comprehend the basic mathematical concepts of more or less, the letters A to Z, counting 1,2,3.... Decades ago, he would have been segregated with other disabled children. Today, he is just one of the gang of 20 in Classroom 18, a regular Grade 2/Grade 3 split class much like any in Canada.
Graeme is unlikely ever to understand the math, science or language arts lessons that go on around him at school. But he is here because of a belief that all children benefit from "inclusion"--one of the hottest issues in education today. "Mainstreaming," as it's often called, is a trend that has gone hand in hand with the closing of institutions, and integration of mentally and physically disabled people into Canadian communities. In schools, the mainstreaming trend has accompanied a broader view of the purpose of education. Along with academic progress, schools consider socialization a prime goal. So mainstreaming allows disabled kids to model themselves on "normal" peers, while teaching other kids to accept differences.
Over the past 25 years, Canada has become a worldwide leader in inclusion. But despite widespread support in theory, inclusion is not easy. While some disabled children gracefully blend in and thrive, some scream, bite, even masturbate or defecate in class; all require more attention. Many parents fear their own nondisabled kids will be shortchanged. Many teachers--already stretching their traditional skills to cope with English as a second language and children with major family problems--agree.
Successful inclusion requires a lot: flexibility, compassion, determination--and, of course, money, which is in short supply in Canada's public schools. Does it work? For some children, definitely. For children as profoundly challenged as Graeme, it's harder to say.
Michael Dagenais, the special education assistant assigned to Classroom 18, greets Graeme at the class door. "It's going to be a bad day," Michael says as he directs his young charge to a sun-drenched corner by the window. Here, Graeme starts every day listening to music. Soon he is seated on an orange beanbag, wearing big black earphones, his body swaying in wide arcs. Periodically, his hands skitter up to his chin, which he flaps at frenetically with his fingertips. His eyes roam with wide head movements, up, down, side to side.
Accustomed to both Graeme's routine and his frequent visitors--resource teachers, aides, psychologists, this writer--the other 19 children settle into small groups as their teacher, Celia Dodds, calls, "Finish up your Mother's Day project, then we start science." Abruptly, Graeme, for whom Mother's Day and science are equally enigmatic, discards the headphones and bolts for the door. He takes no obvious notice of the class, nor do they react to him. A new day has begun in Classroom 18.
Graeme Rush is one of 25 children at Queen Elizabeth with mental and physical disabilities severe enough to qualify for extra provincial funding. There is Emma, an angelic blonde with a genetic disorder that slows her physically and mentally. There is Dan, a quiet miniscule 14-year-old in a wheelchair. There are several kids with Down's syndrome. Each has a story, but each represents, in the words of one father, an "unplanned detour" in the brave journey that is parenthood. Staff at Queen Elizabeth--few of whom planned for careers with disabled children--are along for the ride.
Joan and Dennis Rush suspected early that their son was different. For the first year or more of his life, Graeme seemed to achieve the most important milestones of childhood development, saying words like Mama and Dada more or less on schedule. Yet, after 15 months, there was persistent odd behavior--Graeme would endlessly turn a light switch on, off, on, off, on, off. He had frequent ear infections and never seemed to need rest. Joan, a lawyer and vice president with an insurance company, and Dennis, a paper-mill manager, were worn ragged. Their family doctor told them all parents worry too much. But then, at 18 months, Graeme began to lose his acquired words and skills. He seemed increasingly detached. And he still hadn't slept through a single night. (He didn't until he was 7.) The Rushes demanded to see a pediatrician. Finally, tests at British Columbia's Children's Hospital and Sunny Hill Health Centre for Children resulted in a shattering diagnosis: autism, a mysterious brain disorder for which cause and cure are unknown.
Autism starts in infancy or early childhood; in North America, it's one of the more common developmental disabilities. Doctors disagree on just how common it is, and even on a precise definition, but it essentially means social problems, learning problems, problems relating to the world. It can be so severe that normal life is impossible, or mild enough to allow a career. It has nothing to do with physical appearance. Sixty to 70 percent of autistic children are mentally handicapped. Professionals consider autistic children among the most difficult to include in regular classrooms.
On this very, very bad Friday, Graeme is proving difficult indeed. As the children in Mrs. Dodds's class work on math, Graeme, who dislikes desk work at the best of times, is irritable as he sits at a table for four and resists Michael's efforts to help him make a mark on paper with a green crayon. "Aaaaaaa-roooooooogah," he wails. He clatters up from his chair, strides around the classroom restlessly. Graeme's Grade 3 desk mate and friend, Jonathan Ballin, quietly gathers his papers and moves to a table in a corner of the room. The other two boys at the table continue their work.
Michael, the aide, catches up with Graeme in the music corner. "I know you don't want to do any desk work, but you have to do some," Michael says softly. "You were holding the paper down. That was very good." Graeme rolls onto his back, feet in the air. He unties the laces on his brown leather hiking boots. "Let me tie your laces," offers Michael. Graeme pulls the orange beanbag over his head. Michael coaxes Graeme back to the music corner to touch one of five large touch pads on a communication board. The idea is to make it play a recorded message such as, "I want to go to the bathroom," or, "I want to eat." But Graeme, frustrated by this new device, crosses the room and sits in the middle on the floor. He removes one boot and sock, then springs up and vanishes out the classroom door.
With a good-natured shrug, Michael pursues Graeme down the hall and takes him into the bathroom to change him out of his diaper. Other than Jonathan's change of location, there has been no reaction to Graeme or Michael from the class. Their work continues as Mrs. Dodds walks about, answering questions, admonishing the perpetrator of the occasional giggle or whisper.
A few decades ago, a classroom like this would have been unimaginable. Until the 1950s, institutionalizing disabled people was normal; exhibiting them in public, embarrassing. But, by the late 1970s, attitudes changed, and steps were taken toward including children with disabilities in regular classrooms. In 1982, the Canadian Charter of Rights and Freedoms formally banned discrimination on the basis of disability. Since then, school boards that resist inclusion against parents' wishes risk being hauled through court. Earlier this year, the Ontario Court of Appeal ruled that a 10-year-old girl with cerebral palsy in the Brant County school district had the right to attend school with able children, despite the school board's insistence that she be segregated. (The Brant County Board of Education is asking leave to appeal the ruling to the Supreme Court.)
Today, there's a growing trend toward inclusion in Canadian grade schools. It's mandatory in British Columbia; in Vancouver, all public schools for disabled children have closed. There are still special preschools, but after kindergarten, the alternatives to inclusion are private school, home schooling and a few segregated classes. Ninety-five percent of Vancouver's 3,600 schoolchildren with mental and physical (including visual and hearing) challenges are mainstreamed today, up from 50 percent five years ago.
Joan Rush never questioned that her son, Graeme, would be one of this crowd. After all, many of his other activities are fairly typical for his age: in-line skating (Graeme's balance is terrific), swimming, horseback riding, errands to the bank and supermarket. Graeme attended Berwick, a preschool at the University of British Columbia for both children with special needs and able kids. When he was old enough for Grade 1, a Vancouver School Board official worked with the Rushes to decide on anelementary school. Joan and Dennis visited a school a two-hour bus-commute away with segregated classes for autistic children. Joan, calling it "autism immersion," rejected it immediately. At another school, "It didn't look like the kids were doing anything," Joan says. "One kid was collecting litter in the yard."
The Rushes chose Queen Elizabeth, a school with a reputation as a model of inclusion, because of the staff's active interest in Graeme and because it was nearby. Located in an affluent area, the school attracts highly educated, influential parents who can lobby for their children's needs. When the school's segregated classes were dismantled in 1990, the special education teacher became a general resource teacher. Now, two resource teachers are assisted by a vibrant group of 11 special education assistants, mostly 20- and 30-something young adults like Michael, with varied backgrounds from nursing to early childhood education. Today, almost every class in the school of some 380 children has students with physical or mental disabilities, ranging from kids almost on par with their classmates, who need occasional help from an aide, to profoundly disabled children like Graeme.
Joan Rush is enthusiastic about the results. She says that in the two years Graeme has attended Queen Elizabeth, he has become better at sitting still in class. And she credits mainstreaming for a recent breakthrough--although he is still very withdrawn from the world around him, Graeme now utters a rare handful of words--Dad, Mama, and yes, Michael. She is gratified by the care and interest shown by his classmates, although usually it's difficult to know if Graeme is aware of them. "When I take him out to the bank or community centre," she says, "kids pass and say hi. That wouldn't happen if he didn't go to school with them."
Graeme's dad is less convinced. Dennis Rush accepts that inclusion is a good idea for some kids and is right for Graeme right now, with a caring aide like Michael and typical kids as role models. But unlike Joan, he does not think it is always best. Teachers with degrees in special education who work in segregated classes choose to be there, he points out, while inclusion puts disabled children with teachers with no special training and perhaps no interest. Dennis worries that as Graeme gets older, he may not get the peer support he needs. "He'll get along," he says, "but will he be ignored?" The trend toward inclusion has gone too far, Dennis says. "It's a fad now and it's hogwash. In five years people will come to their senses and realize it's good for lots of kids. But not every kid."
If it's a fad, it's one for which Vancouver pays a high price. The school board spends a total of about $26.6 million per year on extra programs for its approximately 3,600 children with physical and mental disabilities, about $5.5 million more than the province provides for educating that group of children. That works out to about $1,528 extra per child. In contrast, extra expenditures for Vancouver's 3,000 gifted learners this year was $900,000--only $300 more per child than the basic amount. (In the last school year, the Vancouver School Board spent an average of $6,264 per child.) The situation is further complicated because the board simultaneously schools a large proportion of English-as-a-second-language children. Says one teacher, whose children are not disabled: "We're doing nothing for the children who are bright, but they're the ones who will support us in our old age."
Many parents of able children are reluctant to speak out openly against inclusion. Instead, they vote with their feet. Some choose French Immersion programs, where children must be bright enough to cope with a second language. Other parents opt for private schools, which tend to have admission standards that favor the most intelligent students. A Vancouver psychologist whose two gifted children attend private school says: "We carry, as a society, a sense of guilt and responsibility for the unfortunate. But when you're a parent of a child with abilities or skills, and their needs are not met because the money goes elsewhere, you get very angry."
At midmorning in Classroom 18, Mrs. Dodds begins describing how plants reproduce. Graeme, whose patience has run out, is down the hall in the school's computer lab with Michael, generating electronic squawks by touching a computer keyboard. He looks up at Michael with a delighted smile. "Silly, silly, silly," says Michael, smiling back. Graeme gives Michael a hug.
Though Graeme tolerates the computer games and may even enjoy them, Michael explains later that Graeme seems to have an aversion to looking at flat images, including books, pictures and the computer screen. The game over, Michael asks Graeme to return to class. Graeme, who generally tries to please Michael, complies--but only after a detour into the gym, his favorite place in school. Throughout the morning, Michael patiently retrieves Graeme from his various excursions and gently coaxes him back to class. But finally, Graeme has had enough. He sprawls outside on a concrete ledge beside Michael, squeezing himself between Michael's back and the wall.
"Noooo, noooo, noooo, noooooooooo!" Graeme roars, tears streaming down his face. He grasps Michael's hand. "Poor Graeme, tell us about how unhappy you are. You tell us," says Michael. Sobbing, Graeme leaps toward me and gives my arm a strong hug as he peers intently into my face with his streaming green eyes. I return his hug and gaze, feeling desperate that I have no solution to this beautiful child's problems.
Perhaps no one does. Experts admit that inclusion poses daunting challenges, but those driving the mainstreaming trend hope for big rewards. They claim that in general, the education of able children is not hindered, and the disabled child is, even if not instructed much, at least stimulated. Meanwhile, they say, the process helps all children by teaching them social skills.
When I ask Graeme's desk mate Jonathan Ballin what he thinks of being in school with Graeme, he seems perplexed by the question. Graeme is just there, right? "I like Graeme," he declares. "He's my friend." Jonathan arranged his birthday party with Graeme in mind: "I thought of having a gymnastics party 'cause I thought he'd like it." He adds, "Graeme's less noisy and screaming this year."
We look on as Graeme, who has been lying on the floor, gets up to move back to his chair. He holds out his hand as his desk mate Ian Moult walks past, and Ian grabs it; they smile at each other. I also talk to Andrea Phillips, who was bitten by Graeme--apparently with affection--earlier in the year, the only time he has hurt another child. "They say it was a love bite," she giggles. "I like being in Graeme's class. It helps him because he learns how to behave. It gives him good experience for when he's older, and it's probably fun for him."
Many would agree with her. "These are youngsters who are going to have to interact together all their lives," says Charles Ungerleider, associate dean of education at the University of British Columbia. "What better place to introduce them than in a controlled classroom with a trained teacher?" There are also moral arguments for inclusion, including the axiom that a people can be judged by its treatment of its weakest members. Says the father of one mainstreamed child: "My dream for Emma is that when we're not here, she will still have people in the community with whom she can do things. If she were not at school she wouldn't--it's the first step."
Sadly, dreams do not pay for wheelchair ramps, or elevators, or aides like Michael. And there are the political and social costs of diverting resources from programs for able-bodied or gifted children. Advocates for mainstreaming argue that inclusion in regular schools is cheaper, dollar for dollar, than segregation in institutions. The problem in British Columbia, according to Sally Rogow, professor of special education at the University of British Columbia, is that the cost has been shifted from provincial governments, which ran residential systems, to local school districts, which receive some funding to compensate for the additional needs of students. How effectively the districts use that funding and whether they top up that amount with additional funds varies from district to district.
Heather-jane Robertson of the Canadian Teachers' Federation points out that without extra resources, "inclusion is a broken promise." For example, schools in wealthier areas can allocate funds to resources like teacher aides and restrictions on class sizes. Elsewhere, a regular classroom teacher is often left to cope alone.
Warm spring sunshine streams through the windows. It's circle time, one of Graeme's favorite classroom activities, and the kids gather on a rug before Mrs. Dodds. Michael at his side, Graeme sits among them, flicking his fingers at his face and clucking at regular intervals as he gazes about the room.
A little boy in a bright red sweater absentmindedly plays with a bit of tinfoil. Two other boys sprawl languidly on the rug, gazing into space. I look at these daydreamers and at Graeme. At the moment, they're all miles away from the classroom and do not look all that different.
Inclusion during the elementary years is much easier than at the middle or senior level. Many kids this age can be unfocused, so behavior differences are less apparent. There is less of a gap in academic work, less pressure to perform. Also, young children, newly exploring their world, have fewer biases against people who are different. "Secondary school is much more difficult," says Professor Rogow, an inclusion advocate. "The problems there are often complicated language problems, and the child may not understand verbal instructions." For high schools, Rogow suggests redefining inclusion to focus on social integration in clubs and activities after school; during the day, special-needs kids learn basic life skills in individualized "pullout programs," leaving able children to wrestle with subjects like algebra.
But back in Grade 2/Grade 3, it remains unclear how, socialization aside, anyone's education is affected by Graeme's presence. At 11 a.m., Mrs. Dodds begins a question-and-answer session on plant anatomy: "Does anybody know how seeds are dispersed?"
By air?" asks a girl.
By water?" a boy offers. Graeme, clucking under the table, gets his boot off. He wriggles out from under the table and, swinging a boot by its lace, walks through the crowd toward the back of the room, where the errant boot strikes a small boy on the back of the head.
The boy, not badly hurt, puts his hands on his head silently. Graeme's buddy Jonathan admonishes him sternly: "You hurt Ian!" Graeme, encapsulated in his own world, takes no notice. He walks to his music corner and jumps up and down a bit. He makes a strangled noise. Everyone but Michael ignores him and the lesson continues.
Later, after school, Mrs. Dodds admits that she is no fan of mainstreaming. At 59, Mrs. Dodds has dedicated her life to education. She expects children to do their best and gets academic excellence from her students. But she says that because the demands on teachers are increasing, not the least of them the inclusion policy, she is relieved to be nearing the end of her career.
This school is geared around special needs," Mrs. Dodds says bluntly. "We never place a child in a class because he's bright." Some disabled children can learn and should be in school, she agrees. "But some can't move, go to the toilet themselves or talk. I don't know what they get out of school, but they may get something."
Mrs. Dodds says that despite a teachers' strike a few years ago that got restrictions on class sizes and on numbers of special-needs kids, the pressures continue to mount. "Nothing is taken away, but much is added on. At this stage, I'm tired of having new things demanded of me."
As for Graeme, Mrs. Dodds concedes the other children in the class are not hindered by him and have learned empathy and understanding. But, she says simply, "I can't communicate with Graeme. I'm not trained in special education. I honestly don't think I can help him."
Professor Rogow at the University of British Columbia believes inclusion should be tempered by programs tailored for individual needs and abilities; such programs would teach anything from basic communication to riding the bus system. "I think you can do damage to children by forcing them to do things they can't do." Rick Brennan agrees. A PhD in developmental psychology, he founded Glen Eden, a nonprofit special-needs private school that costs about $12,000 to $20,000 a year for tuition and individual programs. "We need to look at individual needs," he says. "Hanging onto the principle of inclusion can blind the person making the decisions for the child."
In fact, there are alternatives to full integration, even within the most aggressively inclusionist systems. In Vancouver, when a school board committee is convinced that inclusion doesn't work for a particular child--a kid who prevents classmates from learning, uses up too much of the teacher's time and is unable to deal with a classroom setting--she may be bused to segregated classes where she can learn coping skills that will again allow her to be integrated. Glenda Wallace, who teaches a segregated primary class at Lord Nelson School in Vancouver's east end, points to one autistic boy who, after a few months in her class, no longer bolts 20 times a day. She affectionately ruffles the hair of another child who refused to touch or be touched when he arrived.
Should Graeme be in Ms. Wallace's class, rather than here? Partway through my second day in Classroom 18, I find my thoughts drifting from a writing lesson to replay the periods of apparent anguish that I have witnessed in Graeme here. And I look around, seeing the room with new eyes. One theory about autism suggests it's caused by the brain's inability to process stimulation, causing autistic people to become easily overwhelmed. In Graeme's classroom, colored paper kites hang from the ceiling, an orange rug covers the floor, generous east windows overlook a street, walls have every inch covered with posters and kids' artwork. A white cockatiel bird hops about in its cage, squawking; the computer printer clatters and spews out paper.
Taking in this bombardment of colors and noise, I have a sudden wild impulse to lead Graeme out of here into a quiet glade inthe nearby rain forest, to rest there awhile. But then my thoughts drift on again. I recall how, moments after unwittingly clobbering Ian with his boot, Graeme unaccountably grew calm and sat down as Michael put on his sock and boot. The affection between the two, the respect shown by Michael toward Graeme, was almost palpable. Michael is committed to inclusion for his young charge. "I feel Graeme is going to learn most by imitating his peers," he says simply.
Michael's compassion and understanding, and the friendship of the children of Classroom 18, represent the best motives of a society trying to be tolerant and to offer hope to all its young. But is Dennis Rush right to fear that, thanks to a blind ideological commitment to mainstreaming, his son could end up slipping between the cracks? And are Graeme's schoolmates getting all the attention and resources they deserve right now? Certainly, this room is a far better place than the institution that Graeme would have been in decades ago. But is it the best place for him? And if it isn't, what is?
You can learn a lot in two days in Classroom 18, but some questions just don't have answers.
Copyright Deborah Jones 1995
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