My son has spastic quadriplegic cerebral palsy (CP). He got that from a congenital cytomegalovirus (CMV) infection. His CP results in him being non-vocal for the most part, and is only kind of ambulatory (he gets around by crawling). He has some issues swallowing and has been in feeding/speech therapy for a while.
It surprises me when he gets “sick.” Aside from all those diagnoses, overall, he’s the healthiest of my three kids. He’s not really predisposed to ear infections, and rarely gets a cold or stomach bug. He has a pretty solid immunity and can go months without being sick.
That dichotomy makes all the sense in the world to me, but it’s hard to explain to other people. Right now is one of those odd times that my son is sick and I’ve had to pick him up from school a couple of times.
It’s hard for me to make it understood that this has nothing to do with his disability—this is just a 4-year-old catching the crud that goes on in preschool classrooms, and that it’s not any more complex than what it seems.
And maybe this is just me—but I don’t always want folks to point to my son’s disability as the cause of normal everyday things. It just feels unfair to blame common occurrences on a disability.
It goes back to that larger notion regarding language some people use about disabilities. My son isn’t sick. He’s not “suffering” from cerebral palsy. He’s not “afflicted” by spastic quadriplegia. Our normal is slightly different, but he’s a perfectly healthy kid with a few impairments…that’s it.
But that’s hard to express to other people. Society is predisposed to look at a child using a wheelchair or a gait trainer and automatically assign the label of “sick.” And in doing so, that kid is immediately “othered.” And when we toss in a common cold, the sick kid becomes sicker.
But when we treat children with disabilities as normal kids who happen to get sick…it results in commonalities between children and even between parents! My kid being sick is no different from your kid being sick. Let’s talk! Let’s share!
So, in summary…despite having cerebral palsy, my kid isn’t sick…until he is. And when he is, we’ll deal with that sickness and get him back to the place where he normally is—perfectly healthy.
The Family Support section offers many ideas and information about parenting a child with disabilities.
Presuming competence means assuming a child with a disability can understand just like anyone else. It means that you don't underestimate the child. Here's why this matters so much.
Here is one mom’s story about the personal changes she made to become an advocate for their child.