Undiagnosed and misunderstood, students with dyslexia face stigma and shame

A few days before the start of classes, Lili Keenan peruses her supplies. Her backpack is a hand-me-down from one of her sisters, but she doesn't mind. She's got a colourful new pencil case. "I have stuff I use everyday, like, glue sticks, pens, pencils, highlighter."

She is the picture of a typical 12-year-old girl getting ready for another year at school. Asked if she's excited, she giggles. "Kinda excited, and nervous, 'cause it's Grade 8." 

Getting ready for school wasn't always such a happy scene.

Lili is dyslexic. From early on, she's had difficulty with spelling, especially with words that aren't exactly spelled the way they sound. She says she doesn't like reading either. "I'm not very good at it. If other kids read a long paragraph, I may read half of one."

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Dyslexia is a language-based learning disorder that affects one in five Canadian students, according to the International Dyslexic Association. Besides difficulties with reading, students can also have problems with spelling, writing and pronouncing words, though it does not affect intelligence. The disorder accounts for 80 per cent of all learning disabilities, and a group of Canadian parents wants schools to do more to help. 

When Lili asked if she could skip a reading lesson in Grade 3, her teacher became angry and demanded to know why. "I was embarrassed because no one else was being yelled at except for me," says the Toronto preteen.

Lili's learning difficulties were first spotted two weeks into kindergarten, when the teacher called her mother to explain that Lili was having trouble with her letters and numbers.

"To be honest, my heart sank ... knowing that it was going to be extremely difficult going forward with yet another child with this difficulty, says Elaine Keenan.

In the Keenan family, three of four daughters have dyslexia. Numerous studies have established a genetic component to the condition.

"The first thing you see is they absolutely don't want to go to school," says Keenan. "They will come up with any excuse possible … because on a daily basis, they experience failure."

'They're wired differently'

"It is hell for a child with dyslexia at home. It is hell in the playground, and it is hell in school," says Keith Gray, 81. "They're wired differently."

He should know. Gray is dyslexic, but that didn't stop him from becoming a top financial executive for TD Bank. He's now retired, but his new passion is helping children with dyslexia. Today he heads up Dyslexia Canada, a coalition of parents with dyslexic kids who are pressing for national guidelines. The group will focus first on Ontario classrooms.

"A child with dyslexia that is not properly trained, properly educated, will not be able to pick up reading, will not be able to pick up spelling, and as a result, they fail in school," says Gray. "I failed Grade 3. I dropped out of [high] school. I couldn't do it."

On the group's wish list:

• A new scientific definition of dyslexia that will allow it to stand on its own as a diagnosis instead of under the umbrella of learning disabilities in general. 
• Mandatory training for all new primary teachers and existing educators in dyslexia-specific interventions.
• Compulsory dyslexia assessments for all students in kindergarten or no later than the end of grade one. 

The International Dyslexic Association's position is that early assessment is the first step in ensuring students with dyslexia get the instruction they need to succeed. 

Gray says he shares that view. "Ontario uses the wait-and-see system, whereby they wait to see how the child makes out." He says the province does not even consider assessing a child until Grade 3. But because there's such a long wait for assessments in Ontario, these often don't get done until Grade 5 or Grade 6. "By then it's too late for the child," he says.

New program provides hope

But parents say they are encouraged by an innovative language remediation program called Empower, a private initiative run out of the Hospital for Sick Children in Toronto. It includes 110 lessons for students with dyslexia, outlining five strategies for spelling and decoding words. The program takes about one hour daily and runs for most of an academic year.

The program was developed by Canadian neuroscientist Maureen Lovett. She is a leader in the field of reading research and is currently the director of the learning disabilities research program at the Hospital for Sick Children.

"We're not saying that the child will be reading like a fluent adult reader after 110 lessons, but our experience has been that the majority of children make really sizable gains," she says.  

Empower also provides trainers to coach school teachers on how to teach dyslexic students effectively.

The program isn't mandatory; school boards who want to implement it can opt to purchase it from Empower. Since it became available in 2006, 750 of Ontario's 4893 schools have used the program, as have another 40 in Alberta, Manitoba and Quebec.

The Ontario Ministry of Education says it will begin to formally pilot Empower programs for reading intervention projects beginning this school year.

But Elaine Keenan says her family has given up on the public school system, which she says has provided "very little help and resources." Instead, teachers have told her to lower her expectations, she says.

After Lili finished Grade 4, her parents pulled her from public school and placed her in a private one, says her mother. And like other frustrated parents of dyslexic children, Keenan has hired private tutors for her daughters.

"I'm not lowering any bar for anybody. They have a right, and they have the intelligence, and the ability and the work ethic to do extremely well in this life — and I'm not going to damage their opportunities and chances to do that."

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