Winnipeg mom wants support, not pity, on World Autism Awareness Day

A Winnipeg mother says she wants people to understand the truth of their lives, as World Autism Awareness Day is marked April 2.

"Just that there would be one day where we offer support and love, but not pity, because pity is dehumanizing," Kalyn Falk said.

Falk's son Noah was diagnosed with autism when he was 20 months old.

Noah is now 17 and with adulthood just around the corner, Falk is thinking about what's next. That includes figuring out what funding will look like.

"We lose all of our childhood support and we move to the adult system," she said. "It feels sometimes quite daunting."

Falk published a book in 2013, Mother of the Year and Other Elusive Awards, which offered a frank look at the challenges and joys of having a child with autism. The book included some dramatic stories, including the time Noah jumped in the river when he was 12 years old. That happened just six weeks after the family's house burned down, after he accidentally started a fire.

Some days are hard, other days 'We take over the world'

When Noah was first diagnosed, Falk remembers feeling that the world seemed so big, that there was so much she didn't know and it was so overwhelming.

Now she says it sometimes feels like the world gets very small.

"Sometimes it really does involve the two of us lying on the living room floor and practise our deep breathing, and that is what we can accomplish that day," she said.

"And other days, you know, we take over the world."

For Noah, a big part of his world is drawing. His mom says it's his main language.

"He's incredibly artistic," Falk said. "He expresses himself visually and helps us see the world in different ways."

Noah makes digital illustrations on his iPad. Currently, he has about 100,000 images.

He drew one of them the day after he got his very first sunburn at summer camp.

"He felt like he was glowing. He thought he was actually dying," Noah's mother said. "It was really quite traumatic for him."

Noah flushes away winter 

Despite the sunburn, Falk says Noah loves summer.

Last week, Winnipeg's unexpected early spring-like weather was interrupted by a snowfall. When Falk went to pick up Noah from an after-school program, she was reminded that they're not a winter family.

"We heard yelling from the women's bathroom. There was water pouring everywhere. He had decided to flush his clothes and his winter boots down the toilet to make winter go away."

As the Falk family starts planning for the coming year and thinking about what 18 will look like for Noah, a new family member is part of the journey. They call Charlie, a four-year-old Labrador, their service dog dropout.

Falk says the dog didn't graduate because he barks at elderly people in sunglasses and at police officers.

But she says now that Noah is older, they don't need a dog with them everywhere they go, so Charlie is a friend.

"I just thought, a service dog dropout is the perfect match for our family," she said. 

Tune in to Information Radio on Thursday, April 2 to hear Margaux Watt's visit with the Falk family at 7:40 a.m. on CBC Radio One, 89.3 FM or 990 AM.