A while back, Charlie was evaluated by the office of Persons with Disabilities to see whether or not he would remain on the state’s list of disabled persons. There are several categories—things like “gross motor skills,” “fine motor skills,” “speech,” "self-care,” etc. If you score below the 60th percentile in two areas you stay on the list for three more years. If you score below 60th percentile in three or more areas AND have the appropriate diagnosis, you get on the list for life.
The evaluation included a whole range of things and truthfully there was little I could answer “yes” to. Despite this, I was devastated when I got the call telling me that Charlie was “disabled for life.” It just seems so finite—like there’s nothing I can do. She also told me the parish had agreed to pay to have a wheelchair ramp installed on the outside of our house.
I should be thrilled about the ramp. I knew we would need one—we live in South LA and our house is raised three feet–but expected we would pay out of pocket for something like that. Now, it will be taken care of. Hubby, the engineer, was more interested in that news than in anything else we’ve done over the last few weeks.
I’m trying very hard not to think about the other side of the conversation—the part where my child is disabled for life. The part where he scored below the 60th percentile in three areas.
I can remember being in Elementary School and getting very upset because I’d scored in the 87th percentile on a standardized test. I was horrified and disappointed in myself. I’ve always been a 90th percentile and above—preferably 99th—kind of gal. I do tip of the top.
Charlie doesn’t do average either and it breaks my heart. My beautiful, tiny boy has already failed so many tests. I know, logically, that it’s just a test. I know that they do nothing to describe my child’s potential or even the amazing odds he’s overcome in just three years.
I also know that I have a long way to go before I’ll be good at living on this side of the bell curve. I have miles to go before I learn to fully detach from this unit of worth.
I’m trying, but some days are harder than others.