Undiagnosed and misunderstood, students with dyslexia face stigma and shame

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

She is the picture of a typical 12-year-old girlgetting ready for anotheryear at school.Asked if she's excited, she giggles."Kinda excited, and nervous, 'causeit's Grade8."

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

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

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Dyslexia is a language-based learning disorderthat affects one in five Canadian students, according to the International Dyslexic Association.Besides difficulties with reading, studentscan also have problems with spelling, writingand pronouncing words, though it does not affect intelligence.The disorder accounts for80 per centof all learning disabilities, and a group of Canadian parents wants schools to do more to help.

When Lili asked if she couldskip a reading lesson in Grade 3, herteacherbecame angry and demanded to know why. "I was embarrassedbecause no one else was being yelled at except for me," says the Toronto preteen.

Lili's learning difficulties werefirst spotted twoweeks into kindergarten, when theteacher called her mother to explainthat Lili was having trouble withher letters and numbers.

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

In the Keenan family, threeof fourdaughters havedyslexia. Numerous studies have established a genetic component to the condition.

"The first thing you seeis they absolutely don't want to go to school," says Keenan. "They will come up with any excuse possiblebecause 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,"saysKeith Gray, 81."They're wired differently."

He should know. Gray is dyslexic, but thatdidn't stop him from becoming a top financialexecutive 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 focusfirston Ontarioclassrooms.

"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'swishlist:

• A new scientificdefinition of dyslexia that will allow it tostand on its own as a diagnosis instead of undertheumbrella of learning disabilities in general.
• Mandatory training for all new primary teachers and existing educatorsin dyslexia-specificinterventions.
• Compulsory dyslexia assessments for all students in kindergarten or no later than the end of grade one.

The International Dyslexic Association's position isthat early assessment is the first step in ensuringstudents 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 provincedoes not even consider assessing a child untilGrade 3. Butbecause there's such a long wait for assessments inOntario, these oftendon'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 remediationprogram called Empower, a private initiative run out of the Hospital for Sick Children in Toronto.It includes 110 lessons for students with dyslexia, outliningfivestrategies forspelling and decoding words. The program takes about onehour dailyand runs for most of an academic year.

The program was developed by Canadian neuroscientistMaureen 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 forSick 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 onhow to teach dyslexic studentseffectively.

Theprogram isn't mandatory;school boards who want to implement it can opt topurchase it from Empower.Sinceit becameavailablein 2006, 750 of Ontario's 4893 schools have used the program,as haveanother 40 in Alberta, Manitoba and Quebec.

The Ontario Ministry of Education says it willbeginto formallypilot Empowerprogramsfor reading intervention projectsbeginningthis school year.

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

After Lili finishedGrade4, herparentspulled her from public schooland placed her in a private one,says her mother.And like other frustrated parents of dyslexic children, Keenan hashiredprivate tutors for herdaughters.

"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 lifeand I'm not going to damage their opportunities and chances to do that."

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