Spring break wasn’t really a break for Peter Raptis, the father of an eight-year-old with autism — but he says almost every moment is a milestone with his son, Mikael.
“This is the first Easter where he woke up on Easter Sunday and was interested in the eggs as opposed to just the tinfoil,” Raptis told Stephen Quinn, host of CBC’s The Early Edition.
“He’s evolving in his concepts and it’s not something I take for granted.”
Raptis, a board member with the Pacific Autism Family Network who lives in Coquitlam, B.C., says his son is the hardest-working person he knows. But while he gets support from resources like the PAFN’s Hub in Richmond, Raptis feels Mikael isn’t getting the support he needs at school.
“For parents, we’re really struggling and we’re fighting the district and advocating for our children,” said Raptis.
The local school district does provide an education assistant for Mikael, but they’re not specifically trained to help children with autism, Raptis says.
He wants to see all school districts offer applied behaviour analysis support workers, a service that is offered just a bridge away in Surrey.
“It’s really mind blowing to understand why districts aren’t able to get on the same page with this,” he said.
“This isn’t about what I want, it’s about what Mikael needs… and deserves.”
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‘It’s exhausting just to be the parent’
Raptis is trying to rally parents who are also concerned about the support their children with autism are receiving at school to share information and knowledge and, hopefully, create some change.
“The problem is many families don’t have the means, the ability, the know-how to even take it to these next levels…
“With parents with children with autism, it’s exhausting just to be the parent… this never turns off. Then you’re taking on another battle, it’s really hard.”
The Coquitlam school district said they “understand that parents of students with disabilities want their children to receive as much support as possible.”
“We have a board certified behaviour analyst that works with us to continually enhance the holistic approach we use, [which] involves EAs, classroom teachers, learning services teachers, a district-wide Inclusion Support Team (IST), who support students, and parents.”
Network funding boost
As outlined in this year’s federal budget, $20 million will be provided over five years for new initiatives aimed at helping families affected by autism.
More than half of the funding — $10.9 million — will go toward the creation of the Autism Intellectual Developmental Disabilities National Resource and Exchange Network (AIDE), which will be led in part by the Pacific Autism Family Network.
The PAFN Hub in Richmond opened in 2016 and Raptis said it has been life changing for him and many other parents.
The centre’s resources include occupational therapists, seminars and training sessions.
“First and foremost it’s an information centre, it’s a place where families that are newly diagnosed, or even going through the process still, are able to get information, exchange information…
“I think so many people that are faced with this, they’re just lost.”
With the new funding, PAFN is hoping to expand and open more hubs around the Lower Mainland to create a broader network of support.