Despite Syonaâ€™s future challenges, Anchel wants to teach her how to be her best self.
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.
My friend, Stacey, was part of the panel discussion and later wrote about the importance of believing in your child. Louise, who writes Holland Bloorview’s Bloom blog, also wrote a post with some powerful thoughts about the film. One of my favourite things about parenting a child with special needs (yes, I know that sounds odd) is getting to connect with some really incredible people that are in similar situations. Both of these ladies offered so much insight, experience and, most importantly, support, and I couldn’t be more grateful for such great friends.
In the world of parenting, and especially in the world of special needs parenting, the issue of adjusting expectations can be an inflammatory one (much like sleep training, breastfeeding and all the other hot topics that serve to divide the parental crowd). You hear some parents talk about how adjusting their expectations helped them to live with the diagnosis. Or how adjusting expectations shortchanged their child. (There was an example in the film when one of the children — who clearly understood more than he could communicate — was put on an educational path that wouldn’t allow him to graduate from high school and his mother’s long-standing hope of him going to college was crushed.) I’ve even heard from adults who are living with CP about how their parents’ expectations (or lack of expectations) impacted their lives.
I think when we talk about adjusting expectations, it is important to make a distinction: Adjusting expectations does not necessarily mean lowering them. It is looking around at the situation that is, and figuring out a way to build on it and make it better instead of comparing it to the dream you had before. Sometimes it can be about setting your expectations higher, even when you have kids with special needs.
In our case, Syona has quite a few communication challenges. We’re starting to use some alternative and augmentative communication techniques (which is a whole other post that I promise to write in the future). These techniques will include strategies to help Syona communicate her feelings, needs and wants. Based on what we see, it appears that Syona seems to understand much more than she can express. And that means I’ve had to adjust my expectations of her understanding much higher than they were before. I talk to her more, I explain more to her logically and I assume that she can understand it all.
I know that Syona’s steps (whether they are her own or in a wheelchair) will be bigger, her voice (in whatever format) will be loud and clear and her smile already helps to light people’s hearts.
Maybe one of our key tasks in life is simply to let go of expectations, accept what is, strive for more and celebrate each and every victory. Maybe this can help us live our best life. Despite Syona’s future challenges, as a parent with this attitude, maybe it will make it a tiny bit easier for us to teach our girl how to be her best self.
What do you think? Have your expectations changed since becoming a parent?
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