When Eddie was first diagnosed with Optic Nerve Hypoplasia and given the label "blind," it was something we could grasp. We didn’t know what his future would be like or what additional needs he’d have, but we knew that the word "blind" was now part of his identity. It seemed easily explained and a "go-to" excuse for many of his challenges. This proved to be dangerous.
When Eddie was in second grade, I think, he received an updated functional vision evaluation, and his teacher of students with visual impairments pointed out some vision that he had. We didn’t even want to talk about it because, to us, Eddie was blind, and we didn’t think his vision should be considered for instructional purposes. By saying he did have some functional vision, it was like she was taking a part of him away from us.
Pros and Cons of Labeling Our Kids
As parents, we can cling to labels because they do become part of our child’s identity. It takes a long time to wrap your brain around a term like "blind," and once that has been done, it’s really hard to re-wrap your brain if the definition changes. We have clung to that term, and also his diagnosis of Autism, like it’s an integral part of Eddie. Schools and providers do this too.
So, what’s the danger of that? There are so many "pros" when considering labels. It seems having a label gives us direction for instruction and tells us what path to follow. It can provide an answer to questionable behavior. It can even provide access to resources and expertise that we may not be able to find without these labels written in files. They seem to help, but they really can hurt too.
When we focus on the labels, we seem to have tunnel vision. We look down safe and familiar paths for answers and forget there is a bigger picture. As I shared above, we also use these labels as excuses for why our kids may not be more like their peers and excuses for why they may not be independent. We can use these labels to lower expectations…which is done by us and also done by others. The file is read, the labels are seen, and immediately, they decide what our children can and can’t do.
Focus Beyond the Label
Now, labels are often necessary for reasons I already mentioned, but how do we get beyond them? How do we stop putting our kids in boxes titled by medical terms? Luckily, I have an answer for that.
We focus on our kid. What are they doing now? What are they good at…strengths? What do we want them to be doing next? How can we get them to do that? What are strategies that have worked in the past? We stop saying, "They can’t because they’re Autistic." We stop saying, "They can’t because they’re blind." Instead, we ask, "What can they do next," and we move one step at a time.
I’m not an expert at this…just yesterday I blamed something on Eddie being blind when the real reason was more complicated. I’m a work in progress, but I am working on it. I want to see Eddie for all the personality traits that can’t be easily categorized because he is an individual. He is funny, musical, affectionate, grumpy at times, obsessed with gum, and kinda in love with Norah Jones. He is not, and never will be, his labels alone.