My son is 6. We’re in a pretty solid, predictable routine. We know who he is, what his needs are and how to serve them.
Rarely are we surprised by anything. We seldom compare his needs to his neurotypical siblings. We know that all children have unique needs. My middle sons are just a little more intense. In the grand scheme of things, there’s not a huge difference.
But then something happens. We get to see a direct comparison of the experiences we have parenting our children. And we see the vast chasm of skill sets we need to be good parents.
Case in point: losing teeth. My older son is 7 and his teeth are dropping like flies. Whenever he comes to our room with a wiggly tooth, it’s a time for celebration. And for making sure we have some cash on us for tooth fairy dues. It’s never a moment of panic because he knows what’s going on and it’s not a surprise to either one of us.
This couldn't be more different when dealing with my son with cerebral palsy. He was in his room one day playing, and I walked in and saw the bottom of his mouth covered in blood. Naturally, I went in to rescue mode, flipped him over, and started checking every part of his face–where had the blood come from? Did he bite his lip? Is he cut? Is he spitting up blood for some unknown reason?
I couldn't figure it out. So I wiped him off and told myself to check on him in 5 minutes. Lo and behold, in 5 minutes, there was more blood. I checked him again–he was getting super annoyed by this point). But this time when I checked him, I specifically looked at his teeth and wiggled them a little bit. Sure enough one of them was wiggly and a little bit irritated because he had been chewing on his teething necklace.
We knew the problem, but it was hard communicating to him what was going on. He was frustrated and uncomfortable. Two things that are tough to deal with for children with autism. And rightfully so! Teeth are just supposed to work! They’re not supposed to wiggle or bleed or fall out. They’re just supposed to work.
And quite frankly, I don't blame him. When you think about it, it does seem a little bit insane that they wiggle and fall out. And then you have to wait for new ones to come in to be able to do what you were used to doing.
I know this, and you know this...but how do you explain all that to a child who is non-verbal and thrives on routine? How do you make them understand that this is a normal part of life?
That right there, for me, is the challenge of parenting a child with a disability. It’s the little mundane things that take on new meaning. It’s the highly predictable things that are supposed to come so easy but require that additional step to figure out and process through.
And Lord knows, we have more teeth in that kid's mouth. So we’ll be doing it more and more often. Fortunately, we’re set and ready to go for the next go around.
Connecting with other parents is a great way to share stories and information about raising children with disabilities.
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.