Monday, October 21, 2002 – Page A7

The sun is already glinting off Bedford Basin when Jo-Lynn Fenton climbs the stairs in her neat, two-storey house in a new subdivision near Halifax.

She unlocks the door to the stark bedroom where her youngest son, Rhys, is crouched under the comforter muttering, "Cold, cold." His pajamas are in a heap on the floor.

Five-year-old Rhys has been known to wake up, ready to start the day, at 3:30 a.m., and spend the first few hours careering around his room, slamming his body into the walls. His parents took down his blinds after they found him chewing on them, and removed the dresser and change table so he couldn't use them as a launch pad for his particular brand of indoor gymnastics. Even the grate that covers the heating duct is screwed into the floor.

On this warm fall day, Mrs. Fenton, a slim, 39-year-old with a Bluenoser's lilt and self-deprecating sense of humour, has been up since 6:00 a.m., and there are three backpacks and two lunch bags lined up by the front door to prove it. Her husband, Bruce, a lieutenant in the navy, was up and out of the house before 7.

It's Monday, a school day, and that means Mrs. Fenton has about an hour to get Rhys and his nine-year-old brother, Liam, who has a milder form of autism called Asperger's syndrome, to their classrooms at Bedford South School, a few blocks away.

It's not an easy task. She has to dress Rhys, who refuses to allow her to do up the snaps on his red-and-navy striped rugby shirt or turn up the cuffs on his pants. Then there's Liam, who finds his brother's uncontrollable behaviour incredibly irritating. "He makes him nuts," Mrs. Fenton explained. "They get along like oil and vinegar."

The two boys have so many food issues it's hard to keep track: Liam will eat only about 10 foods, and Rhys, who is fatally allergic to eggs and nuts, absolutely refuses to eat the plain pasta he likes for lunch unless it's been cooked that morning. Both of them eat a bowl of dry Froot Loops and a glass of chocolate milk -- the only kind of milk they'll drink -- for breakfast.

Liam is egocentric, insists on controlling his environment, and has a very literal interpretation of language. When he gets frustrated, he can erupt in a tantrum, although not nearly as often or for as long as his brother.

Rhys, who is classified as extremely hyperactive, displays impulsive behaviour, never sits still, avoids eye contact, and talks in repetitive chunks, mainly lines of dialogue he's memorized from his vast collection of videos.

"The last psychologist's report for Rhys said I should not be alone with my children" because they are so difficult for one person to manage, Mrs. Fenton said, laughing at the well-meaning, but impractical, advice. "Really, to watch Rhys, am I really watching Liam? No."

There was a time not too long ago when children like Rhys would have been institutionalized and Liam's prospects for living an independent life would have been severely limited.

Now they go to school, where they are taught in special-education classes or, in many cases, integrated into the regular classroom. The transformation occurred as a range of therapies, most created by behavioural psychologists, made vast improvements in the lives of children once thought to be severely handicapped by their inability to talk, lack of social skills, sensory sensitivities and ritualistic behaviour.

"Research is showing us these kids can live independent lives; they can actually be employable if you do it [treatment] right," said Toronto school-board trustee Shelley Carroll, whose 12-year-old daughter has Asperger's syndrome. "If you get it right, you can save society from one more burden, and I think there are so many [autistic children] we've got to figure that out."

Like many parents of children with autism, Mrs. Fenton -- who has three university degrees -- is bright, well-educated, and an expert in the vagaries of the condition, not to mention the only reliable source of information about the idiosyncrasies of her children.

Advocates like her have been transformed into activists for the therapies that will allow their children to connect with a world that, for many, is nothing more than a disconnected jumble, a sensory overload.

That means teachers, principals, and school-board specialists are increasingly faced with parents who often know more about the subject than they do, and who are demanding what they see as the gold standard in treatments and therapies, even if that costs more than tuition at a private school.

The treatment they are pinning their hopes on -- mainly because a 1987 study showed almost half the children who received it for 40 hours a week achieved normal behaviour -- is called applied behavioural analysis or ABA.

Now that the B.C. Court of Appeal has ordered the provincial government to provide one-on-one therapy to four autistic children, at an estimated cost per child of between $40,000 and $60,000 a year, the stage is set for a showdown that will have vast repercussions for departments of health and education.

Although some provinces already pay for a version of ABA for preschool children, treatment is usually cut off once they reach school age.

Now parents such as Joyce Dassonville, a Dartmouth, N.S., lawyer, are setting their sights on school boards.

Her youngest daughter, Dominique, couldn't speak when she went off to kindergarten in 2000.

"She said 'pluh' for please and 'more,' and that was the entire extent of her language," said her mother. "She didn't come when you called her; she didn't know her own name; she wasn't toilet-trained. Essentially she was more like an 18-month-old baby, except in a 5½-year-old body."

Now the seven-year-old, whom Ms. Dassonville once likened to an untrained dog, spends her days roaming happily around a church basement in Halifax, joining circle time to sing Old MacDonald with four other autistic children, counting to 100, and even adding.

This is Milestones Learning Centre, a private school Ms. Dassonville founded this year after she pulled Dominique out of the Halifax Regional School Board system because it was unwilling to provide educational assistants trained to deliver ABA, which Dominique had been receiving at home.

"Essentially I was using school as a glorified babysitter," said the mother of three, whose oldest child, a teenaged boy, has Asperger's syndrome. ". . . Toward the end of that first year, we started to realize that she was literally regressing. Some skills we would teach at home on weekends and evenings, she would unlearn them when she went to school."

Ms. Dassonville is one of those parents who prefers to fight the system rather than work with it: She sued the departments of Community and Social Services and Health when they refused to pay for Dominique's ABA treatment; then she sued the Education Department and the Halifax Regional School Board because Dominique's school did not provide her daughter with ABA-trained staff and an independent program for her daughter.

The lawyer hasn't scored a victory yet, but she plans to launch more lawsuits soon, including one to try to force the provincial government to pay the $25,000 tuition her non-profit school charges Dominique. Some schools, such as New Haven Learning Centre in Toronto, charge $55,000 a year.

Halifax Regional School Board chairman Mike Flemming sympathizes with Ms. Dassonville, but blames the provincial government, which provides $14-million to the Halifax board specifically for special-needs children.

The board spends another $17-million on special education anyway, siphoning it from elsewhere in its $280-million budget.

He said the Dassonville case is troubling, in part because the board doesn't want to waste precious money on court challenges.

At the same time, if the board were to provide the ABA programs and trained staff she is demanding, "it would open the floodgates.

"The money has to come from somewhere, so we have to defend ourselves."

At Bedford South School, Rhys and Liam are not the only children with pervasive developmental disorders. Principal Ann-Marie Melynyk said there are five in a school population of just 535 children.

The Autism Society of Canada estimates 1 in 286 children has a pervasive developmental disorder, including autism, an increase of 63 per cent over the past two years.

It estimates 105,000 Canadians are afflicted and it costs about $2-million to treat each case over the lifetime of the patient, a cost they say could be slashed in half with early diagnosis and effective treatment.

Part of the problem is the disorder is just so tough to treat. Each case, although they may share some of the same characteristics -- hand-flapping, rocking and avoiding eye contact -- is unique and demands an individual program plan.

The other difficulty is that regular teaching techniques are not as effective for children with autism, said Rita Jordan, a lecturer in autism studies at the University of Birmingham's school of education.

"Many of the ordinary things are back to front in autism," the British expert explained. "Many children with autism learn to speak through learning to read. Most teachers wouldn't contemplate teaching a child to read if they couldn't speak or tell a story or arrange pictures in a sequence."

Rhys learned to communicate before he went to school using the Picture Exchange Communication System, and has now progressed to the point where he can comment on things, although his school, like all Canadian schools, has no specific program for autistic children.

Both Rhys and Liam have an educational program assistant (EPA) assigned to them alone to work with them in class; neither has any training in ABA, and it is Rhys's mother who tells the assistant how to teach her son.

Each child gets two hours of extra instruction a day after school, Liam doing homework with a tutor and Rhys working downstairs in the playroom with an ABA-trained therapist, who tries to teach him concepts such as give and take. Mrs. Fenton figures she spends about $30,000 a year on therapy outside school for her two boys.

But Mrs. Fenton wants her children to go to public school for one important reason.

"I want normally developing peers to teach them socially appropriate skills, and I get that in the public-school system," she said.

Liam is integrated into a regular Grade 4 classroom, where he keeps up with his classmates with the help of a part-time EPA who helps keep him on task and explain instructions. Rhys spends two hours a day in the school's learning centre with a full-time EPA, although he joins the regular class for morning announcements as well as gym and music.

In an ideal world with unlimited pots of money, Mrs. Fenton would love to see people trained in ABA and other therapies deliver Rhys's programs to him for 20 to 40 hours a week. But the school week itself is only 22.5 hours long, and the only prerequisite for the job of an educational program assistant is a high-school diploma.

"I believe that Rhys is getting the best of what's available now," his mother said. "Sometimes I find people superimpose [expectations] on systems that are impossible to maintain. I think about the people who had autistic children 20 years ago. Nobody even thought about educating them. They institutionalized them. Can you expect society to go full circle overnight? Tomorrow? Next week? It's a transition."

Still, last summer when she hired a trained therapist to give Rhys 32 hours of ABA therapy a week, she did see a marked difference.

Mrs. Fenton is cautious enough not to say whether he was just ready to absorb new material or the difference was related to increased hours of one-on-one intervention. But it's impossible to ignore the wistful note in her voice as she describes his progress during the break from school.

"His language was more complete-sentence language. He followed directions better, like two-step instructions," she said. "We haven't lost any of that. It's just that we may hover here a while."

And although her youngest son has yet to tell her he loves her, she looks forward to that moment.

"That will be a good day," she concedes, pausing for just a split second. "Liam tells me all the time, so that's all right."