For Kids Brain Health Network.
In the early 2000s, Sharon McCarry was a globe-trotting Fortune-500 marketing director working ten to 12 hours a day. When her second child, Colm, started showing developmental delays during his first year, it was the beginning of “a life that was different, in every single aspect,” she says.
McCarry, who lives in Montreal, left behind her demanding job to free up time for advocating and caring for her son. “I flipped some houses to help pay the bills, but my focus was on trying to figure out what was happening with him and how I could help him,” she says. “It was stressful not knowing what was going on.”
Disagreements between McCarry and her common-law partner over the nature and extent of Colm’s needs contributed to their eventual breakup and estrangement. Meanwhile, Colm’s behavioural issues, which included physical tantrums and kicking, were getting in the way of taking him out, even for routine errands such as grocery shopping. “I couldn’t find a babysitter for him, so my parents came over to help a lot. It was all hands on deck,” McCarry says. “At first, my girlfriends continued to invite me out to classes or events. I remember being grateful that they were trying to get me involved in stuff, but I simply couldn’t afford the time.”
Colm was just three years old when he was finally diagnosed with autism-spectrum disorder (ASD), but his disability had already impacted his family’s finances, emotional health, social networks, routines and relationships.
“Family impact” is a measure that researchers use to quantify the effects—positive or negative—that a family experiences as a result of an event, policy or situation. When it comes to understanding the impact of caring for a child with a neurodisability, considering the child’s diagnosis can be helpful, but it doesn’t necessarily paint a complete picture of the family members’ lives and challenges.
“We typically work with the idea that children with ASD present a certain way, that those with global developmental delay (GDD) present a certain way and so on,” says Dr. Emily Gardiner, a researcher affiliated with the Department of Pediatrics at the University of British Columbia. “But if you think about functioning—things like social skills, communication ability or cognitive ability—there’s actually quite a lot of overlap across disorders, and differences within the same disorder.”
Continue reading this article at Kids Brain Health Network.
Photo courtesy of Tanaphong Toochinda
