Being a parent of a child with a disability often feels like a series of “no’s”.
A series of fliers in your child’s backpack of activities that are for others – not for them.
A series of doors shut in your face. Or rather, your child’s face.
Limited opportunities for a child who’s already come into this world with a multitude of challenges.
Daily reminders of how many “shoulds” are a part of our lives, of how much pressure is on the shoulders of a parent of a child with a disability.
Sometimes I go into survival model and completely ignore all of it. I set it aside as something I will deal with later, and I don’t take any action at all. In fact, I oftentimes dislike posts such as this very one because I feel like it lumps all parents of children with disabilities together and makes it sound like a negative thing. It can come off as a “woe is me” mentality, when in fact most of us lead very full, happy, social, successful lives.
Other times it all piles up and I get overwhelmed by all of the roadblocks. I get angry and I let it fester in my mind, having imaginary conversations with others in my head, to the point that my youngest daughter says “Mom, why are you so cranky?”.
I strive every day to come to a positive middle ground, a state of mind where I can take action on those things that are most important, and let go of those that need to be let go of. Because not all of it can be important – it would be too much. One person can only do so much.
I am a parent who has resources, who knows the law, and who takes action on those things that are important to me, and yet I’ve been told NO countless times over and over again because that’s often the default answer that has never been questioned.
Most of the times it’s well-meaning. Questions haven’t been asked, assumptions haven’t been questioned, out-of-the-box thinking hasn’t been implemented. The status quo is often not questioned. We allow certain things to continue because it’s the way things have always been done. And oftentimes, because changing the status quo can be exhausting when we’re so exhausted already.
There’s a lot of pressure that is involved in paving the way. A wise friend of mine told me that “paving the way” doesn’t mean that the road is paved. It means that others before you have done work that you’re expanding on, and that others behind you need to continue to do the same work. It’s a process.
Let’s all do some work, no matter how small it seems, to question all of the no’s and get to some yes’s. Or perhaps at least some maybe’s. Let’s ask ourselves how we can build relationships with others so that we can work together and not automatically assume no’s. Let’s work together so that we can be energized by finding solutions instead of exhausted from coming up against road blocks.
Happy Monday!