COVER

Why Kids Can't Read

As science cracks the code, parents fight for their children's right to specialized education

ROBERT SHEPPARD September 7 1998
COVER

Why Kids Can't Read

As science cracks the code, parents fight for their children's right to specialized education

ROBERT SHEPPARD September 7 1998

Why Kids Can't Read

COVER

ROBERT SHEPPARD

They are imps, all of them—and they know it. The mere hint of a visitor in their class has them all primed to perform. "Listening position," orders teacher Bernadette (Learn with Bern) Siracky, and most of them hop to: backs straight, hands where they can be seen. The test words are rolled out with the crack of a drill sergeant. "What are your lips doing?" asks Sir acky. "What is your tongue doing? What are your teeth doing?" Words are physical commodities here at Cal gary's Foothills Academy, a unique pri

vate school for the so-called learning disabled. Words are rolled about in the mouth like hard candy. Their rhythms are thumped against the side of the desk. Siracky uses anything to inject them into the brains of otherwise healthy, intelligent children who have been told they cannot read, they cannot learn. “You know, Miss Siracky, all of us here have been on TV at least twice, or had our pictures in the newspaper,” says Sean with all the world-weariness of a 10year-old. Sean knows that he is in a special school, subsidized largely by private benefactors, with a waiting list of 1,000 for the 35 spots that open each year. What Sean probably does not realize is that his presence at Foothills Academy is an indictment of a public system that is floundering—almost indecently in some cases—in its attempts to deal with its weakest learners, with those who cannot make sense of words. Ten years ago, universities were churning out special-education teachers and school boards were racing to develop individualized communications programs and separate facilities for students needing extra help. But more recently, cash-strapped boards have retrenched, leaving parents of children with learning disabilities, attention deficit or emotional problems no alternative but to resort to the squeaky-wheel approach—or scramble for the growing number of private alternatives. In Calgary, the number of specialized classrooms for the learning disabled plummeted from 148 in 1994 to one in 1997, although there are plans to reinstate a few this fall. In wealthy Mississauga, Ont., where the Peel District School Board was a mecca for special needs families, the number of communications programs for learning disabled kids has been reduced from 90 to 50 since 1993. It is a pattern repeated across the country. Last month, in Prince Albert, Sask., a justice from the Court of Queen’s Bench decided it was time for the courts to decide whether the learning disabled were getting the education they deserved. In a rare lawsuit, parents who had been supplementing a modest version of the Foothills Academy program in their lo-

As science cracks the code, parents fight for their children's right to specialized education

cal public school, won the right to challenge the province and their boards in court over their refusal to sustain and expand the program. The Prince Albert case portends a far-reaching change for the education of those with learning disabilities—genetic, lifelong afflictions that may affect as many as 4.5 million Canadians, 730,000 of them school age. Dyslexia, the most common form of learning disorder, is often not discovered until age 9 or 10, when children can no longer struggle through on memorization. For some, a reading disability is merely a frustration for an otherwise rational mind to get around. For many, it is the barrier preventing even the most elemental connection of one bit of knowledge to another. Several studies have suggested that those with learning problems are over-represented in jails, reform schools and the ranks of the working poor. A study by a New York City clinician in the mid-1980s found that almost 50 per cent of adolescents who committed suicide had been previously diagnosed with learning disabilities. As Halifax psychologist Wayne MacDonald says: “You can pay me now, or pay me later. In the long run, society is paying the price for these wasted lives.” While schools are scaling back on specialized programs, researchers and innovative private academies are discovering new techniques to reach the weakest learners, and science is zeroing in on the hard-wired limits of the brain—indeed, on the very roots of reading. In a breakthrough last March, Sally Shaywitz, a senior scientist in the department of pediatrics at Yale University in New Haven, Conn., published actual photographs of the reading brain using sophisticated magnetic resonance imaging. Her research proves that there is a neurological basis for reading disorders: the reading path in the dyslexic brain is dramatically different than that of a normal reader’s. Scientists are excited at the possibility of providing a pictorial benchmark of the reading brain to explore whether early intervention programs might actually rewire the neural network. Geneticists now believe that the neurological base for dyslexia may be hereditary, and that it is linked to the same chromosome that contributes to such relatively commonplace maladies as

hay fever, migraine headaches, asthma, thyroid disease and allergies.

In her airy office at Toronto’s Hospital for Sick Children, festooned with Ikea boxes full of research results and a wide assortment of children’s dolls, psychologist Maureen Lovett says the notion of dyslexia—“word blindness”—has been well documented for more than 100 years. But it is only relatively recently that researchers have realized it is not the eye but the ear—the way words sound in the brain—that is at the base of reading and writing disorders. And it is only in the past three or four years that her researchers, working in seven experimental public school classrooms in Toronto and Mississauga, made the breakthrough they were hoping for.

In intensive daily sessions, Lovett’s team found they could teach the 44 component sounds of the English language and improve their students’ reading skills within just a few months. “But there was this amazing failure to transfer what they learned,” says Lovett.

“They could read ‘pine,’ but they could not read ‘wine’ or ‘sign.’ ” Then her team added on what Lovett calls strategy-based or “talking-to-yourself” learning: rhyming patterns used to coax the sounds of similar words through reluctant brains. The results were more lasting.

That kind of double-pronged technique is exactly what Foothills Academy in Calgary has been practising for most of its 18 years. The cost of the program, per student, is $14,500 annually—although most are highly subsidized. New arrivals, all of whom read at half their normal grade level, are bombarded with 70 hours of phonemic awareness to teach the sounds of language and the way they are formed by the tongue and larynx. Then comes a myriad of coping strategies—everything from desk thumping to looking in mirrors to see the way the mouth forms sounds. Students are taught how to order words, and their lives as well. In fact, the biggest part of the program is teaching specific organizational techniques: from words to sentences to thought structures and homework responsibilities. “Kids come here, they can’t read a damn thing,” says Gordon Bullivant, Foothills’ loquacious, chain-smoking executive director. “We mother-hen them for three years. Then they are out, back to the real world.” Only one pupil has returned after three years; 86 per cent of Foothills’ former students have gone on to some form of postsecondary education.

In Charlottetown, Kay MacPhee is finding similar success with the use of nonsense words to teach the sounds of reading. As principal of the Prince Edward Island School for the Hearing Impaired, MacPhee had great success teaching deaf children to read “through the tiny speck of hearing they had.” When a doctor friend asked her to try her luck with the learning disabled, she rose to the challenge. Says the retired principal: “It took longer with the learning disabled because you had to bypass the strategies they were already using—mostly memory and that will only take you so far.”

Four years ago, MacPhee formed her own tutorial company, Spell Read Canada. Her partner is Kay Reeves, a woman who came to her in 1992 at the age of 44, wanting to learn how to read. Now, mostly through word of mouth, they have 24 students from as far away as Washington and Texas spending the summer in their Charlottetown classrooms. Among their pupils is a 38-year-old Nova Scotia businessman, putting his company on hold for a month so he can learn to read.

So why are the public schools not knocking on their doors? MacPhee—and Lovett in Toronto—are almost apologetic. Give the public system time, they say, there is some resistance to be knocked down. Bullivant, who also happens to be the current president of the Learning Disabilities Association of Canada, is more blunt: “It is all a question of dollars. You can teach children to read—but you have to spend the time and the money.”

earning disabilities can challenge families to their core. Take Charlie’s story. By all accounts, Charlie R. was a likable boy from small-town Saskatchewan who did his chores, kept a bee farm and helped handicapped kids with their swimming lessons. From the beginning, Charlie’s teachers recognized that he had a reading problem. He could not pronounce many words properly. Even when he seemed to learn to read some words, he would be totally flustered by those same words on a new page. Charlie was held back a grade in order to “catch up” with other children. A couple of times a week, he and a small group of children with similar problems were given special reading lessons. Art, music and gym were eliminated from his schedule so he could concentrate on the tougher subjects. His mother was told to take privileges away so he would be forced to do his assignments. Nothing worked. The other kids ridiculed him. Charlie hid his homework in the hedge, or brought it to school scrunched into a ball so he would not have to turn it in.

Just before he left school for good, a 15-year-old enmeshed in drugs and alcohol—“the only things that made me feel good,” he told his family—Charlie was diagnosed as being seriously dyslexic. He read and wrote at a Grade 3 level with 20-per-cent comprehension. It was a staggering realization that had been hidden from his family, friends and teachers. Looking back, Charlie’s mother says: “The knowledge of what a learning disability really is and how it encompasses one’s whole life had been missed. Can you imagine Charlie living all those years, trying his best to fit in? That would be like going to work every day and being asked to do a job that you could not do. And tomorrow you have to get up and go to work again to try to bluff your way through it one more day.”

Charlie’s is an extreme case, but in many ways not atypical. Parents have sold property or given up lucrative jobs and relocated in efforts to help their learning disabled offspring. Like Charlie’s family, many parents have found it too painful to tell their stories without maintaining anonymity. In an effort to crack the problem with research funding, the National Institute for Health in Bethesda, Md., declared the 1990s the

Dyslexia, the most common of the LEARNING DISORDERS, often goes undetected until age 9 or 10

decade for the learning disabled. Some of that funding has made its way to Canada: Lovett’s group at the Hospital for Sick Children is participating in a three-city study—Toronto, Atlanta and Boston—to determine, she says, “what works best for what kind of child.”

In the United States, almost five per cent of school-age children are classified as learning disabled and are therefore eligible for extra funding. In Canada, classification standards vary by province, but typically between three and four per cent of the student population is diagnosed as learning disabled. Manitoba and Alberta are currently conducting high-level reviews of their special education programs. This fall, Alberta has promised to add 590 new fulltime intern teachers to provide literacy assessment and assistance in kindergarten plus Grades 1 and 2. In populous Ontario, the government has maintained its special education budget at $1.2 billion, the lion’s share of which goes to programs for the learning disabled at the rate of $1,200 and $2,700 per student, depending on age and category. Large, sophisticated boards such as Mississauga’s Peel District School Board have schools dedicated to those with severe learning problems, as well as discreet classrooms and review committees to go over assessments and individualized programs. And many school boards in the Maritimes and Ontario have adopted the New Zealandcreated Reading Recovery program, an intensive word awareness strategy designed for Grade 1.

Worthy as these efforts may be, they must be viewed against a backdrop of stop-and-go funding and a prolonged retrenchment. Judy Tilston, the elected chair of the Calgary Board of Education, is also the mother of a learning disabled youngster who is about to enter high school this month. The prospect, she says, “scares me spitless. There is not a lot of extra support out there. He will be going to a high school with one learning strategist on staff—a good one I am told—and 2,200 kids.” When it comes to the learning disabled, Tilston says, “There is no question that this

board has really strong feelings that the public system is not meeting these needs appropriately. But the reality is we don’t have the money. We don’t even come close.” In most provinces, public schools get a little extra for learning disabled students. “But we are already taking a ton of money out of the general instruction grant to help our special needs population,” says Tilston. “It is just not enough.”

In Peel, the public board has cut back on specialized programs, but increased the number of teachers with a specialty in learning disabilities for its general classrooms, notes John Amon, former director of the board’s special education program. ‘We made a shift to reduce costs at the expense of a service-delivery system,” he explains, referring to the cutbacks in the segregated programs and facilities, “not, I like to think, at the expense of learning disabled students.”

For many special needs advocates, that is a debatable point. At the school board level, the biggest fights have been over what is commonly called mainstreaming, or what some refer to as “the myth of inclusion.” Should students with serious reading or attention problems be taught in a mainstream class with some extra help, or in a segregated environment? “Generally speaking, parents of physically or mentally disabled kids want inclusion in mainstream classrooms,” says Anne Price, executive director of the Calgary Learning Centre, a non-profit agency that coordinates educational research and testing. “Parents of learning disabled kids want segregated classrooms because they know their kids do not perform well in larger groups.”

School board administrators argue that the shift to mainstream instruction is not being driven by cost-cutting alone. They focus on issues of self-esteem and fairness to other slow learners, including those with English as a second language. Many Ontario school boards will not test ESL students for learning disabilities until they have been in the system for at least two years, setting up an intolerable wait in some situations. Edward Blackstock, chief psychologist for the Peel District School Board, is unequivocal in his preference: ‘We on the front lines believe more strongly in specialized classes than the research shows.”

Cutbacks have led to fierce fights around the special education watering hole. Yude Henteleff, a prominent Winnipeg lawyer who has been a tireless advocate on behalf of the learning disabled for nearly 30 years, says he has been increasingly called upon to mediate disputes between parents of special needs children and parents of extremely bright or “gifted” children—all fighting over limited funds. An unforgiving critic of the special education system, not just in Manitoba but in many other parts of the country, Henteleff cites certain school districts that will not offer special help to a poor learner unless that child falls two years behind; others will cut extra tutorials or special classes once a student starts to show some progress—a catch 22, many parents feel.

Not all cases of learning disabilities lead to failure. Twenty-year-old Krista Ferguson has just completed her first year in a teacher’s program at Lakehead University in Thunder Bay, Ont. Bright, vivacious and outgoing, she says many of her friends do not know that she mixes up letters and numbers, has great difficulty spelling simple words such as “which,” “multi” and “unite” and, “Oh yeah,

I can’t tell time.” She says she can read certain types of clocks, but has trouble remembering whether “quarter to” is 15 minutes before the hour or after.

Ferguson, who grew up in a bedroom community north of Toronto, was identified at an early age as having a learning disability. But hiving her off into a segregated classroom with kids with behavioral problems, attention deficit disorder and different degrees of learning disorders just

made her withdraw. “I would just try to fade into the background,” says Ferguson, “and hope my teachers would ignore me.”

Having her daughter formally identified as learning disabled was an enormous dilemma, says Karen Ferguson. ‘You don’t want to label your children because it will stigmatize them. But they don’t have any self-esteem anyway because they know they are not accomplishing what they want.” Once she was labelled, there was a new frustration, says her mother: “Her marks were reflecting something that wasn’t happening. You got the feeling they were giving the child an A so the parents wouldn’t complain.”

Krista Ferguson struggled for years, but succeeded because of a supportive family, extra tutoring and what she calls her coping mechanisms. She sounds out words differently in her head to help with the spelling, and she tries to avoid certain situations. “I’ll probably be the only primary schoolteacher who will have to use a calculator to add one plus one,” says Ferguson, half in jest. “But at least I will have a better understanding of what it is like for a student to have an invisible disability.”

Making the transition to the workplace is something Morrey Siegel can address. Thirty-two and frighteningly articulate, he is one of the early pioneers of the learning disabled movement, having been diagnosed 25 years ago with dyslexia and severe hyperactivity—what is now called attention deficit disorder—before there were programs in place to deal with these problems. Siegel’s parents had him assessed at Toronto’s Clarke Institute of Psychiatry and paid for extra tutors at school. Learning was a struggle, and still is. “This is a lifelong disability,” says Siegel. ‘You don’t educate your way out of it.” It was only after he finished school—and earned two diplomas in business and property assessment at Seneca College—that he felt the doors closing. He wanted to be a civil servant. Both the Ontario and federal governments had employment equity programs, but he did not fit the criteria. “They call this the invisible disability,” says Siegel. “I did not fit their stereotype of a disabled person. The system says, ‘We’ve got these programs for you. We want you.’ But they are not there.”

Today, students are being taught self-advocacy tips and have the benefit of modern technology. Computers can spell-check homework, or scan documents and sound them back to poor readers. In Alberta, learning disabled students as young as 8 are being allowed extra time on provincewide tests. But with such advances come questions of fairness. In the United States, where students with learning disabilities have statutory rights and are federally funded, there has been a vocal backlash against those who are perceived to be taking advantage of the system. In that country, nearly 4.5 per cent of its grade school population is in publically funded learning disabilities programs at a cost of nearly $9 billion a year—roughly four times the cost of its Head Start program for poor kids.

In the United States, learning disabilities are defined simply as an unexplained difference between a student’s potential and actual performance. As a result, middle-class students with high IQs and average achievement are receiving special tutoring, computer equipment and extra time on university entrance exams for scarce places. Mark Kelman, a Stanford University law professor and co-author of a new book called Jumping the Queue: An Inquiry into the Legal Treatment of Students with Learning Disabilities, argues that the disability movement has been overtaken by middle-class parents worried that their kids are not getting ahead. But psychologist Marc Wilchesky, co-ordinator of the learning disability program at Toronto’s York University, believes that only a small minority of students are trading on the label for some advantage. “This is a very motivated hard-working group,” says Wilchesky. “Ninety per cent of these students stay on to complete their degrees, which is a much higher retention rate than the regular student population.”

To date, Canadians have not been so litigious as their neighbors south of the border—but that may be changing. In June, the Canadian Human Rights Commission ruled in favor of a federal civil servant in Etobicoke, Ont., who had been denied a promotion nine years ago be-

cause she had auditory dyslexia and could not learn French. The commission awarded Nancy Green more than $70,000 for lost wages and $5,000 for hurt feelings. It also ordered the federal government to develop a program to recognize and accommodate people with learning disabilities in the federal civil service.

Then there is the precedent being set in Prince Albert. For five years, a group of families in the Saskatchewan farm community ran charities and late-night bingos to supplement a scaled-down version of the Foothills Academy program in their local public school. Last year, when they ran out of steam and the four school boards involved refused to expand the program to more grades, six families and the support group calling itself the Concerned Parents for Children with Learning Disabilities took the unusual step of asking the courts to declare that their children were not being taught in a way they can learn. Last month, Justice Gene Anne Smith of the Saskatchewan Court of Queen’s Bench rejected the province’s and the school boards’ attempts to dismiss the matter out of hand, saying there are fundamental rights at stake—the rights of children who cannot learn easily or in a traditional manner. The case will now go to full trial, probably in the fall. The school boards have argued that such a legal exercise can only be an “inconclusive seminar on special education.” But for those families battling the system, what lies in the balance is nothing less than the gift of reading. □

SIGNS OF A DISABILITY

COVER

Say ‘cowboy,’” instructs Judith Wiener, an authority on learning disabilities at the University of Toronto. “Now, say it again, but don’t say ‘boy.’” There are kids who can’t do this. There are adults who can’t do this. They perform like eight-year-olds. Often called “the invisible disability” because children seem otherwise normal and intelligent, reading disorders such as dyslexia can be hidden for years. Possible indicators of a learning disability include: Infancy: pronounced resistance to cuddling and body contact; lack of, or excessive, response to sounds or other stimuli; little or no vocalization Preschool: delayed language and immature speech patterns; difficulty following directions; difficulty skipping or catching a ball; impulsive, fearless, cannot control behavior; confusion about rightor left-handedness Adolescence: poor, laborious handwriting and/or bizarre spelling mistakes; disorganized; confusion about directions or time; poor social skills; socializes with a younger group; tendency to be very literal, rigid, humorless and/or gullible

NORMAL BRAIN

DYSLEXIC BRAIN