All arms and legs, he was the typical, active toddler, keen to point out to his parents letters and numbers on signs and licence plates, often reciting them accurately, and always with a smile.
“He loved doing that. We thought it was great,” recalled Donabedian, a lifelong Richmond resident.
But what was different was the lack of one-on-one connection Jonathan had with people.
“When he was in my lap, he wouldn’t look at me.”
A small thing at first, it troubled Kathryn enough that she decided to explore what was possibly at the root of the personal distance her son seemed to maintain.
The answer came at the age of three when Jonathan was diagnosed with autism.
“It was a shock to hear, a shock for any parent to hear,” Donabedian said. “When you get the diagnosis, all these questions come to mind. It’s why, how, what? And you immediately want to fix it.”
Jonathan is now 11 and mostly non-verbal. He wears noise-cancelling headphones that filter out distracting sounds.
After enrolling her son in a series of behavioural therapy programs in centres scattered across the Lower Mainland and special education programming in the local public school system, Donabedian is still exploring ways to try and guide him towards the mainstream of society.
It hasn’t been easy being the parent of an autistic child, piecing together the care and treatment for Jonathan that has had its setbacks.
“I had people tell me it was hard to work with my kid because there was so little progress, and that broke my heart,” she said.
But the overriding goal is clear in her mind.
“My dream for him is to communicate,” she said. “In general, he’s pretty easygoing and doesn’t get frustrated that he doesn’t speak. That’s a concern.”
Autism hub breaks ground
After six years of planning and fundraising, this week’s ground-breaking for the Good Life Fitness Family Autism Hub on Sea Island, next to BCIT, is offering Donabedian — and other parents of autistic children — hope their offspring will eventually live life with a degree of independence.
The first of its kind in the province, the hub, which has a price tag of $28 million — the province has provided a grant of $20 million — will house within its 58,000-square-foot confines a one-stop centre for research and support for children, adults and seniors with autism spectrum disorder. It’s a growing community.
According to the Pacific Autism Family Centre Foundation, ASD occurs in approximately one in every 68 births, and may appear during the first three years of life. It is four to five times more common in boys than girls — affecting one in every 42 boys — and is the most common neurological disorder in children.
Given the one in 68 prevalence rate, it is estimated that there are approximately 69,000 people affected by ASD in B.C.
Charting Jonathan’s future
“I worry about Jonathan’s future as an adult,” Donabedian said, her eyes starting to well up with tears as she begins to project what life could hold for Jonathan.
Ultimately, Donabedian plans to continue being his primary caregiver, giving Jonathan independence by eventually moving him into the separate suite her parents currently occupy in her Seafair home.
“He’s my son, and that’s what I’m prepared to do,” she said.
But there are still many years before Jonathan can get to that stage. Currently, he’s enrolled at Errington Learning Centre, near Willams and No. 3 roads, a re-developed wing of Errington elementary that has space for up to eight students with learning disabilities — students who can benefit from one-on-one interaction with an educational assistant outside the often overwhelming environment of a regular classroom for children with developmental challenges.
Monica Pamer, Richmond School District’s superintendent, said the facility for elementary-aged children is for students with complicated situations.
“What we’ve learned is we can’t really meet their needs in a typical school setting,” she said.
“So, this environment — with places where you can be by yourself, a sensory room with a slide and things to swing on, plus a communal area — has a goal to get students settled and self-regulated so they are processing their environment and learning.
“Many of them are capable in some ways, but have conditions — sometimes it’s language, or just understanding social cues, that makes it extremely difficult. This environment settles it down and simplifies it,” Pamer said.
But the key is that the students are not strictly segregated from the rest of the school population.
“We have really tried to design an environment where they can succeed and be part of the overall community,” Pamer said, adding that some learning centre students do crossover to the regular classrooms at Errington.
While the learning centre has only been open for over a year, its results have prompted thoughts of offering similar programming for secondary school-aged students.
“We’re really pondering this,” Pamer said, “because as children mature, they can cope with more. But we are considering perhaps creating something like this for older kids.”
Breaking ground on the ‘hub’
The Good Life Fitness Family Autism Hub received a boost in funding at its Dec. 16 ground-breaking ceremony as David Patchell-Evans, the husband of Canadian Olympic rower Silken Laumann, and founder and CEO of Good Life Fitness, one of the largest, privately owned chain of fitness gyms in the industry gifted $5 million.
Patchell-Evans, known as “Patch,” said fitness has been his passion for more than three decades — he was a multiple Canadian rowing champion.
But the main source of his involvement with the hub is his daughter, Kilee, who has been affected by autism.
“I’ve always felt I had some control over the outcomes. What I have not chosen, and at many times have felt overwhelmed by, is the devastation of being a father with a daughter who has been profoundly affected by autism,” he told the large group gathered for the ground-breaking.
“When my little girl was diagnosed, help was virtually non-existent.
“Today, I have hope. Today, I have hope that parents can get reliable information; that children will be screened at an early age, not waiting years for a diagnosis,” he said.
“Hope, thanks to the strides being made by research, including our own Kilee Patchell-Evans Autism Research Group.
“So, while autism has been the greatest challenge in my life, the place where at times I felt powerless, I have learned that I can help. I can contribute and I can share my journey.”
Scheduled to open by spring, 2016, the hub will be an information and support centre, working with a series of up to eight satellite facilities across the province, said Terry McKay, project director for the facility.
That is planned to be partially run by ACT (Autism Community Training), a provincially funded program.
But what will be new to the realm of autism support is a lifespan centre, which will focus on adults identified on the autism spectrum.
“Assistance will include developing skills in finding work in the labour market, and we will be looking at some potential partners in that,” McKay said.
“But what that lifespan centre is going to do is create a computer lab that will provide training. And all of the functions within the centre will employ adults on the spectrum.”
This has not been done previously due to the fact there is no funding currently for that age group.
“Once you reach the age of 19, any funding from the Ministry of Children and Family Development stops, so in essence, there’s no support for adults on the (autism) spectrum,” McKay said.
The question of adult support has been one topping the list during the centre’s planning stages.
“All kinds of people have come up to me and asking that,” McKay said.
“There’s cases where parents have their autistic son or daughter in school who don’t know what they are going to do when they graduate, and if there is any assistance for that. And I refer to this program that we’ll be developing over the next 12 months and be open when the centre opens.”
Also housed at the hub will be a treatment centre staffed by behaviourists who will become tenants.
Assessments will also be done in the on-site clinic. And a research centre will be set up to include specialists from an array of sources. To date, talks have been held with UBC, Genome BC and the Michael Smith Foundation to staff that portion of the facility.
Linking all of those areas to the satellite centres will be an audio/visual system.
So far, those remote sites have yet to be identified. Work commences on that next February with the aim of getting three open by the time the hub is ready for business, McKay said.
