Last week I had the opportunity to attend Holland Bloorview’s screening of the documentary Certain Proof: A Question of Worth. This film focuses on three children living with significant communication and physical disabilities, who struggle against public schools in an emotional battle to prove their worth. Although it’s based in the United States, the film is a strong reminder of the challenges children with special needs can face to demonstrate their capabilities.
There was a point in the movie where one mother talks about how constantly adjusting her dreams and expectations is an emotionally draining challenge. This resonated with me because we’re in the “discovery” stage of Syona’s special needs. Though she has the diagnosis of CP, it’s a bit too early to figure out exactly how this is going to impact her life and her abilities.
I made a comment in the discussion that followed the film and said that it sometimes feels like blow after blow, and in our case, the CP seems to effect Syona from head to toe, from inside to out. As a parent, it is so hard to continuously adjust our dreams and expectations about our lives as a family (I also cried in front of a room full of people. Slightly embarrassing but not unexpected — I’m a crybaby, remember?)
Shortly after, a young man mentioned that it was important for parents to remember that, as their children with special needs were growing up, they too were going to need to adjust their own expectations. And it’s hard for them as well. As parents, it is important for us to remember that. This was one of those lightbulb moments for me.
Throughout our life, we are constantly adjusting our dreams and expectations, whether you have a child with special needs or not. My life is nothing like what I expected… and guess what? That’s OK. And guess what else? It’s even better than I expected…
