Family selling house to afford autism help
It is the day before the photo of the little boy. The boy on the beach with the little shoes.
Heather Bourdon, 29, is at home, an 11th-floor apartment off Clyde Avenue, talking about the sacrifices we make for our children. Theirs is not so great, she said. Look at migrants who risk everything to cross oceans, for bluer skies. Yes, we looked, we saw.
“There are so many families in our situation who are having to take extreme risks with their future, gambling on their quality of life, everything, for the benefit of early intervention.”
She and husband Dominique, 32, have three children under the age of 5. The oldest, Jacob, 4, has autism.
To pay for private therapy, which costs $5,000 a month, the couple have put their home on the market and moved into a onebedroom apartment where they all sleep in one room and eat at what looks like a card table, only smaller.
They don’t expect to stay too long, so nothing hangs on the walls. Most of the living room is a play area. Heather says they chose this neighbourhood because it is walking distance to the private Portia Learning Centre, where Jacob goes for therapy — and walking distance matters in case they sell the car.
“It’s wonderful now,” she says of the verbal progress Jacob has made in the past five months. “He’s so smart. He has so much potential.”
A therapy called Applied Behavioural Analysis (ABA) and the related Intensive Behavioural Intervention (IBI) are considered among the best techniques to help youngsters with autism. The therapy is done one-on-one, for 20-plus hours a week, and helps to alter poor behaviours, reinforce good ones, so that the child can actually settle and learn.
In Jacob’s case, he seemed to be growing up normally, learning his alphabet and numbers in French and English, when he began regressing. Most striking, say his parents, was the practice of so-called “stimming” (from self-stimulation), in which the child constantly repeats physical movements or sounds.
Jacob could “stim” for hours, flapping his ears, pacing back and forth, and humming or babbling to himself. “We couldn’t teach him anything,” said Heather.
“He wasn’t potty trained, we couldn’t get him above one or two words, and there was a lot of screaming. How could I send him to a school?”
By age 3, he was diagnosed and the couple began the steep learning curve. Early intervention seemed to hold the most promise, but the publicly funded program, through the Children’s Hospital of Eastern Ontario, had a waiting list — measured in years.
What to do? Heather plunged into the sea of information, joining online groups, getting professional consultations and even learning techniques on YouTube. They were convinced Jacob needed intensive therapy and ended up at Portia’s office on Courtwood Crescent.
They’ve spent $25,000 already, cleaned out their savings, and put their Greenboro condo on the market. Heather had to leave her job in the insurance industry. Dominique, meanwhile, is completing his plumbing apprenticeship, so isn’t yet on a full salary. As if life wasn’t stressful enough, Heather’s mother, Carmel, died in September 2014, only 64.
Heather, meanwhile, was making the rounds of advocacy groups, working through the maze of applications, only to confirm the notion that a publicly funded program would require a two to three-year wait.
Along the way, Heather says, she’s met parents who have gone to great lengths to get care: like moving to other provinces where wait times are shorter.
The Toronto Star reported earlier this year how common is medical “migration” to ensure proper treatment for children with autism. The Ministry of Children and Youth Services confirmed that wait times in Eastern Ontario are 25 to 28 months, depending on the program.
“I think there needs to be a federal strategy because the provinces can’t do it on their own and we don’t want people uprooting to go to other provinces just to get support.”
Kim Moore is a clinical director at Portia. She’s heard the stories of parents both moving within Ontario and crossing the country for better care. Waits of two or three years in Ontario are the norm.
“The very sad part is that the parents get this diagnosis, and that in itself can be devastating news, and then to find out what therapy is best and that nobody will help you.”
Added a spokesman for Autism Ontario: “I spoke to a reporter in Mississauga yesterday. Same story. A family selling their home to pay for IBI.”
The couple has applied to charitable trust funds for help. And they’ve started an online campaign, so far not promising. On Thursday gofundme.com/therapyforjacob had exactly zero dollars in it.
They’re hoping for another year of therapy, at a cost of about $60,000. They are a remarkably upbeat and happy couple and, by hook or crook, you just know they’ll manage.
It is what Mom and Dad do wherever families still hope. How one little boy is the whole world.
There are so many families in our situation who are having to take extreme risks with their future, gambling on their quality of life, everything, for the benefit of early intervention.