WATERLOO — Janine Bernard didn’t want to waste any time getting help for her son while she waited for government-funded autism therapy.
Two-year-old Desmond Bernard couldn’t speak, which led to tantrums because he couldn’t tell his parents what he wanted.
“You have to teach them everything. Nothing comes naturally,” said the Kitchener mother.
She found him specialized therapy with another mother who knows the challenges of raising an autistic child. And she returned to school to learn how to help children with developmental delays.
“If you can start things really early, it makes a world of difference,” said Karen Neary, a behaviour consultant and clinical lead at blueballoon Health Services in Waterloo.
Neary created new programs for parents who are worried about their child’s development, waiting for a diagnosis and services, or simply don’t know where to turn.
She’s also hosting a parent group that has its first meeting on Wednesday at 6 p.m. The group, which will provide support, practical tips and a forum to share information, is open to any parent, not just clients of blueballoon. The privately run centre caters to children with physical and developmental challenges, and learning, social or behavioural problems.
When Neary’s son was diagnosed with autism, she was overwhelmed with all the treatment options.
“All I know is I’m panicked now,” Neary said. “You’re obsessed with starting instantly, but you don’t know what to do.”
That was compounded by her worry about the potential already lost because he was diagnosed at 3½, long after Neary suspected something was wrong.
“I always feel I had those wasted years and I didn’t want other people to feel like that,” she said.
Neary gathered all the information she could and then began sharing it with other parents in the community. Neary, who was an X-ray technician when her son was diagnosed, went to the University of Waterloo to bolster her personal experience with a PhD in developmental psychology.
Her Getting Ready to Learn program is an intense 10 sessions over three weeks that fosters those skills children need to learn — such as eye contact and imitation — so they can get the most from daycare or other therapy.
Another program uses pictures to develop communication skills in children, like Desmond, who have trouble telling people what they want. Along with that, they learn how to be persistent and look for someone when they want something, such as a snack or toy.
“It’s really teaching him all the aspects of communicating when he can’t physically say the words yet,” Neary said.
Neary’s programs are not just for children with a diagnosis, but also those who are a bit delayed and could use an added boost. Sometimes that early extra help is all that’s needed to get children on track and no more therapy is needed.
“It could be that is enough to get them caught up with their peers,” Neary said.
Parents also learn how to help their children and continue the learning at home — something Bernard appreciates. At home the family uses the same picture system as in the program.
That’s an amazing change for Bernard, who felt lost and unsure what to do when it was determined her son had autism. They’re still waiting to hear if they’re even eligible for government-funded therapy, and then if they’re approved the wait is years before a child starts.
Now she feels much better about Desmond going to a drop-in preschool. Her ultimate goal is integrating her son into a regular school classroom. That goal seems in reach with all the progress Desmond has been making with Neary in just a matter of weeks.
“It gives me higher hopes for him,” Bernard said. “It’s been amazing watching it.”
Find out more about the parent support group by emailing karen.neary@blue-balloon.com or call 519-957-9595.
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One mother’s quest inspired autism programs to help other families