“Parents reported becoming much more clear on what mattered in life, and it wasn’t about money or material objects or power,” says Gillian King, a scientist at Bloorview who co-authored the first of a two-part study on parent beliefs, which was published in Child: Care, Health and Development in 2006.

Parents said they gained a new appreciation for relationships, happiness in the moment and celebrating the small things, an outlook that promotes resilience, Gillian says.

In the first part of her study, 15 parents of children with down syndrome and autism participated in focus groups on how parents’ beliefs change after the diagnosis of a child with a disability. In the second part, 16 families of children with down syndrome and autism who had recently experienced a transition – such as their child starting kindergarten or high school – were interviewed about their beliefs in two in-depth interviews.

When their child was first diagnosed, parents grieved the loss of the future they envisioned for the child, the study found. This emotional upheaval spurred them to take a close look at their values and priorities.

An important step in this process involved giving up “trying to fix the child,” Gillian says. Instead, parents came to see and appreciate their child’s strengths and learned how to advocate for their needs.

Meeting other parents who had adapted and grown through similar situations helped study participants gain a sense of hope. “Optimism, having hope for the future, acceptance and appreciation” were described as ways of thinking that helped parents cope, Gillian says.

Eventually, “parents gained new dreams and could see the positive benefits for their family and society in having a child with a disability,” Gillian says.

It’s important for parents early on to know that other families go through similar struggles in adapting to their child’s disability, but that in time they come to see their situation in a new light, Gillian says.