Karen Guy is trying to convince the provincial government to reverse a recent decision that will impact children diagnosed with Autism, including her eight-year-old son Austin.
“I’m afraid for him, really afraid,” the Barrie mom said in an interview, as she watched Austin at an indoor play centre. “Look at him. He’s happy, laughing and he’s playing. Without IBI we wouldn’t be here. Before he couldn’t focus. He was out of control all the time.”
The anguish washes across Karen’s face as she talks about being ignored and “cast aside” by the government.
She had a brief encounter with Premier Kathleen Wynne who was in Barrie for an unrelated media conference, and a meeting with Barrie MPP Ann Hoggarth. Both discussions were "disappointing" and now Guy doesn't know where to turn.
Intensive Behavioural Intervention (IBI) refers to an application of therapy in an intensive setting (minimum 25 hours per week) to result in behaviour change and improvement.
The government has voted to fund IBI only for children aged five and under, shutting the door for Austin and others like him.
“What will happen to him?” she asks, voice escalating in anger. “They don’t understand. Kathleen Wynne doesn’t understand. My son deserves the best life. He deserves to get the treatment he needs.”
Austin is 8 years old.Austin is playing nearby with his older brother, Colby, a brief and infrequent moment of relaxation for the mom who admits she is exhausted, frustrated and losing hope.
He was diagnosed with Autism when he was two-years-old. It was a blow that slapped Karen and her family as they were learning to cope with other serious medical issues including lung disease.
“I knew that something was wrong, and so the diagnosis wasn’t really that much of a surprise,” Karen admits. “I have to say, though, it’s been tough. Tougher than I could have imagined and we just keep going.”
A happy youngster, full of energy and prone to bursts of anger and even rage, Austin runs across the indoor play place to his mom for a hug – and then he’s off again, under close supervision by 13-year-old Cody.
He’s non-verbal, but not non-communicative. A large black tablet, at a cost of over $8,000, is his lifeline, says mom.
“This is his voice,” she says. “It’s how we communicate and it is so important, vital for us to understand his wants and what he’s thinking.”
Communicating has helped tremendously by reducing frustration for Austin, and that means calmer days for the entire family.
It’s just one tool, however, and Guy says she is worried that the toolbox that is critical for her son is about to be closed by the provincial government.
In a recent surprise decision, the government voted to eliminate access to IBI for children over five years of age.
It’s the IBI therapy that turned things around for Austin, teaching him to focus, to learn and to communicate.
He’s been in the program for 18 months and will be “booted out” in September when the province changes the rules.
He attends IBI four days a week and regular school on Wednesdays.
“I’ve seen a huge difference in him,” Karen said. “He’s a lot calmer and way more focused.
“When I ask him to do something, he does it now.
“He helps me set the table, he gets the milk out of the fridge and gets his bowl for cereal.”
Because he is calmer, he is now able to focus at school and to learn.
“His teachers are amazed, because they have seen him go from a kid out of control in kindergarten, yelling, screaming, pushing, slamming doors to gradually getting to where he is today … They are amazed at how far he has come.”
However, she says that without IBI, her son will regress and no longer be able to stay at school.
She also fears his behavioral issues will escalate, especially as he grows in size and strength.
“All that hard work and all the happiness we have for it is going to go out the door,” she said, turning her eyes to the floor.
And after a pause to regain composure, she concludes her thought.
“He’s losing everything and I don’t know what will happen. I’m afraid for him.”
