When her 8-year-old son was diagnosed with Asperger syndrome a decade ago, Margot Nelles quickly discovered there were few resources to help children and families like hers.
So she set out to fill the vacuum. Starting with her credit card and an office at her kitchen table, Nelles launched the Aspergers Society of Ontario and built a website to provide information and connect parents. The Toronto mother-of-three soon became the go-to expert for families, teachers and professionals, and today fields calls from as far away as North Carolina and Dubai.
Now Nelles hopes to fill another void. Next fall, she and business partner Wanda Bogris plan to open Black Oak Academy, a private school for children with Asperger’s. It would be the first in Canada designed only for children with Asperger’s.
“It comes out of a huge need,” says Nelles. “They’re a very complex group of kids. They come with a set of needs, and those will be met in an environment where (the children) are understood.”
Nelles and Bogris want to create a place where kids with Asperger’s, an autism spectrum disorder with a particular set of traits, can learn in their own style and thrive.
Asperger’s kids are frequently misunderstood because they tend to be intelligent and verbal but lack social intuition, which can lead to being teased, excluded or unfairly treated as behaviour problems.
Characteristics vary widely but they are often sensitive, creative, prone to repetitive behaviour and highly focused on their particular interests. But they need help developing social and communication skills.
Nelles cites the example of an adult acquaintance who has a PhD in quantum physics but lives on welfare because of his social and psychological problems.
The pilot school, initially for grade 1 through 8 students diagnosed with Asperger’s through a psychological assessment, will be in midtown Toronto. A site has been chosen but details are not yet finalized.
Annual tuition will be a hefty $20,000. But Nelles notes it’s not uncommon for parents of children needing intense support to pay more than double that — for special needs private school plus an additional $30,000 to hire an aide.
The new school needs nine children enrolled to cover costs and open this fall. Currently eight families have committed.
It has already received applications from more teachers than it needs, all highly trained and qualified to work with Asperger’s children.
Kevin Brooks of Toronto plans to enrol her 11-year-old son, who has suffered in a public system that doesn’t address his academic or emotional needs. A budding gardener, he gets along well with younger kids and adults, but is teased and ostracized by classmates.
“To me this is just gold to have a school dealing specifically with these kids. I’m 110 per cent on board,” says Brooks. “It’s just a huge relief.”
Another Toronto mother, who didn’t want her name used to protect her son’s privacy, says she plans to remortgage her home to pay for the specialized school.
Her grade 6 son has been in seven schools and she has been on standby for years to field calls from teachers, pick up her child and deal with school-related crises.
Nelles and Bogris both know first-hand the kinds of battles parents can face.
Bogris has a 9-year-old daughter, Alexandra, who was diagnosed four years ago. Nelles has two sons with Asperger’s, now ages 18 and 12, who both spent years being bounced from one classroom to another. Her older son has attended five high schools. She has fought long and hard for supports for her own sons and countless other children.
The two mothers joined forces last year to create Aspergers et Al, a firm that advocates for families, trains educators and other professionals and helps parents negotiate for special ed services.
While some argue that children with special needs like Asperger’s benefit from integration, Bogris says that can only happen successfully with adequate structure and support, “which public schools don’t have the resources to do.”
Often it’s the unstructured times, like recess and lunch hours, where kids with Asperger’s are most vulnerable, she says.
Denise Fruchter, founder of Camp Winston in Muskoka for kids with neurological disorders, says they need to be taught by educators who understand the way they learn. When nurtured, they can go on to become high achievers.
A specialized school makes sense, says Fruchter, because Aspergers “is very much a culture, as well as a disorder with a powerful set of gifts as well as challenges.”
Black Oak Academy will run classes of eight to 12 students with a teacher, educational assistant and co-op student in each. It will deliver the Ontario curriculum customized for each child, and focus on building social and communications skills.
Fees cover lunches, assistive technology and extra services such as occupational and speech therapy.
Most important for many parents, they won’t be called to pick up their children due to “behaviour issues,” says Nelles.
“You can go out and work now and your kid will be okay.”
Nelles and Bogris hope to create a network of schools throughout the GTA but they aren’t turning their backs on the public system. They hope their pilot can serve as a model and a resource for other educators and the community.
After years of struggling, Nelles’ son Isaac is happy and successful in his grade 6 class and wants to return to public school next year. To his mother, this is a sign that the system can work when there is willingness and teamwork between schools and families. After changing schools three times, Alexandra Bogris wants to stay in her neighbourhood school for Grade 4. But both children know the new school will be there if they need it.
The mothers hope that once students at Black Oak Academy start to master social skills, some will be able to return and succeed in mainstream schools.
Monday, June 21, 2010
Canadian mother launches first school there specifically for students with Asperger's
From The Toronto Star: