N.B. students with learning disabilities lack support, say parents, advocates

Samantha McKiel says it's been a years-long battle getting access to the proper help for her daughter Sophia, who has dyslexia.

McKiel and her family moved back to New Brunswick seven years ago after spending more than a decade in Alberta.

They settled into their new lives and school in the Saint John area, where Sophia's Grade 3 teacher raised the possibility she had dyslexia, acommon condition that affects the ease with which a person reads, writes, and spells.

Those are some of the first skills children master early in their school careers andform the foundation for just about every other subject they'll encounter.

McKiel saidjust a few months after Sophia's learning disability was recognized, the pandemic happened, and the family could not access any support for the young student.

"If you were not a stay-at-home parent or had the flexibility to be able to teach your kid online every day, then your child fell behind,sadly. And my work didn't stop. My husband's work didn't stop."

Expensive assessment

Eventually, in Grade 5, Sophia got what's called a psycho-educational assessment. It cost them $3,200, but McKiel said it was worth it. It gave the school insight into their daughter's dyslexiaand helped it come up with a personalized learning plan.

Thissmall win was short-lived.

When Sophia moved to middle school the next year, it took the familyon a roller coaster trying to get those same supports in place again.

They eventuallyturned to Faye Theriault, of Dipper Harbour, for help, a private tutor who lives about 45 kilometres southwest of Saint John.

WATCH | Faye Theriault says early signs of dyslexia are detectable:

Reading advocate says early intervention is essential so students don't slip through the cracks

7 days ago

Duration 0:54

Faye Theriault is a reading tutor for people with learning disabilities such as dyslexia. She wants to see a national strategy to diagnose children before they begin school, so they start out on the right track.

Theriault, retired after a long career at N.B. Power,gotinto tutoring while helping her grandson learn to readafter he was diagnosed with dyslexia and dysgraphia, which affecthow words areprocessed by the brain.

Theriault's skills are in high demand, with some of her clients drivingup to an hour each way just to see her.And every week she hears from a new parent, often stressed and in tears, she said, looking for help.

That's why she'strying to get teachers trained inthe OrtonGillingham structured literacy approach, whichoffers personalized instructionand breaks down reading and spelling into smaller skills involving letters and sounds.

And while it's considered the gold standard when it comes to teaching people with dyslexia how to read, there are alternatives.

The Barton Systemis used by tutors at the non-profitLearning Disabilities Association of New Brunswick. Executive director,Ainsley Congdon, saidit'sbased onOrtonGillingham.

"Orton-Gillingham istop-tier dyslexia intervention. Barton is underneath that in its influence. So a lot of the terminology is very similar ... but it is not as individualized."

Congdon'sassociationprovides support and advocacy to roughly 130 people with learning disabilities in the province.

She also goes into the school system on occasion to offer an introduction to staff aboutlearning disabilities, such as dyslexia, dysgraphia and dyscalculia.But she saidthere's more that can be done.

"The Department of Education needs to continue investingin teacher professional development anddeveloping their understanding of learning disabilities," said Congdon.

CBC News requested an interview with the Department of Educationbut one was not provided.

Four years ago, Theriault, wanting to make a difference, took things into her own hands.

In 2020 she created a community Facebook page, Let's Make a Difference Blacks Harbour,to co-ordinate efforts to raisemoney to send teachers through afour-day OrtonGillingham online training program, at a cost of $350 per teacher.

"The response was totally amazing. We put five teachers in this local school in the Maces Bay area," at first, she said.

Those fundraising efforts have grown. Last year, alobster raffle raised enough money to put 27 teachers through the course. And so far this year, awooden fish fundraiser has paid for 16 more teachers to take the training.

She and others are creating the fishand painting them brightcolours which carrymeaning, from turquoise, which represents International Dyslexia Day, to the colour green for hope.

It's a visual sign of support, Theriault said, for those with a learning disability.

"When our kids go through our community and they see those fish, it tells them something that's really amazing. They're not alone, and dyslexia is real."

The proceeds go directly to the non profit, Teachers for Reading Canada, which has made it theirmission to train every teacher in Canada on the OrtonGillingham approach.

Valdine Bjornson,the group'sdirector of training, wants students to know that they're capable and they can do whatever they want to do.

"The sky's the limit," she said.

But that confidence can be hard to instill in young children, when they struggle to keep up with their peers.

"From a very early age, they start to feel that they're not competent. One of the participants in my study called himself stupid several times, which is absolutely heartbreaking."

Bjornson saidthe Orton-Gillingham accredited training can be adapted to classroom instruction, small groups, or individual support.

"There's always going to be room for families if they choose to get support outside the school system, but Bjornson says the difference is when people are being forced to pay for outside help.

The responsibility lies withthe Departments of Education, she said, which might mean "asking more of our departments of education, asking more of our faculty of education."

Peter Legacy is asking more from political leaders, too. He's the president of the New Brunswick Teachers' Association, and understands the benefits of supporting children at the earliest stages possible.

He says the "NBTA recognizes the urgent need for immediate and targeted early interventions that respond to each student's learning profile ... We urge New Brunswick's political leaders to prioritize increased funding to meet today's educational challenges, ensuring that schools are equipped to provide the necessary services for all students to thrive."

Theriault agreespoliticians need to get on board. But she hopes it can also be addressed at a higher level.

"All the research is all there. We need a national strategy for dyslexia similar to the one we have for autism, where intervention starts before our kids go to school."

That would avoid what she calls "the wait to fail," where students can suffer for years before receiving a diagnosis, leading to low self-esteem, anxiety and other mental health issues, which can last a lifetime.

"We can't do it alone," she says. "There has to be some way that the parents, the schools, the teachers and our professionals can get together and teach our kids to read. It's not rocket science."

Meanwhile, McKiel saidthe stress of the situation weighs on them, and without the support in school, she and her husband often spend their evenings trying to re-teach the day's lessons to their daughter.

"We didn't go to school to be teachers, but we feel like we're constantly having to find a way to become teachers."