Lately, I’ve found myself increasingly frustrated about many things. Whether it be the constant back-and-forth with insurance companies or the struggle to make sure that my son’s school is meeting his needs effectively. I just find that I’m constantly battling, and constantly wondering why I have to battle.
We, as parents, battle daily for a couple of reasons. The main one is that we go to bat for our children to get them what they need. We advocate for them because often they cannot advocate for themselves.
The second and more complex issue is that the structures around us are created by and for non-disabled individuals. Often those structures don’t at all work for disabled folks, and no one seems to notice. So, part of the battle is to help people realize that “Hey, what you have in place doesn’t work.”
Case in point—my son has gone to a decent number of primary care pediatricians for little things like ear infections. None of the pediatrician clinics that we go to have automatic doors—kind of annoying when you’re pushing a child in a wheel chair. So, when we get to that door, I have to reach out, open the door, prop it open with his chair, come back around, hold the door open, and push him through.
You’d think of all places, a pediatrician’s office would have accessible doors, but that goes back to the original point. They’re not doing it because they’re negligent. They’re doing it because they don’t understand the struggle associated with trying to push a child in a wheelchair through the door.
Those offices are built primarily with the needs of typical kids in mind and we, as the parents of kids with disabilities then must share why those structures don’t work for us.
And I do that. But it’s just frustrating sometimes, you know? There are so many moments where I wish the world were built by folks with disabilities because it would be a much more inclusive and welcome place.
There are moments where I must take a step back from the frustration and breathe a bit. Failure to do so would be detrimental to my health and maybe the health of others around me.
But I’m frustrated because my son doesn’t fit perfectly into the world around him. And I realize that it’s my job as his parent to be the bridge between the two, and to teach him to bridge the gap between the two as he grows up.
That’s hard. And sometimes it’s ok to admit that.
Read here for more information on parenting children with disabilities and family support.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.