Going through the grocery store I’m a label reader. Ingredients matter. I prefer whole foods, and when I buy packaged foods, I look for labels, so I know exactly what I’m getting.
Labels can get a bad rap when they’re applied to people. Ideally, we’d have a world where everyone is accepted as they are and neurodiversity and disabilities need no explanation.
Two of my children were born with an extra 21st chromosome and the label that goes with it, Down syndrome. It’s a familiar disability to most people, and since their facial features carry the hallmark of the syndrome, it might be easy to put that label by the wayside and pretend it doesn’t matter. For my son Alex, we add in Childhood Apraxia of Speech. Few people understand that one right off the bat, but in an educational setting, it gives a framework of the type of difficulty he has speaking and how to approach it. Benjamin has a hearing impairment, autism spectrum disorder, and numerous medical diagnoses, or labels.
Day to day I see my sons as Alex and Ben, no further explanation required. But when we met a new neurologist this week, it helped an awful lot to have labels to explain Ben’s complex web of diagnoses. And when we moved to our current school district, having common verbiage to describe the strengths and challenges of my children to staff who need to meet their needs saved a whole lot of explaining the minutia of who they are.
A concise and mutually understood definition of various terms streamlines effective communication, but at the same time, we mustn’t forget the most important labels of all: human being, child, person. First and foremost is the humanness of any person with a diagnosis, label or disability. The terms we use help us identify and quantify so much, but when we lost sight of the forest because we’re too busy analyzing the trees we miss the most important criteria. When I tuck my kids in a night or when we sit around the dinner table discussing our days, we’re a family, people, individuals. The minutia fades and the faces and our laughter as we share our lives is what matters.
My family is a family first, a mom, dad, brothers, and sisters next, and everything else just details. The details matter in context but in life, we forget they even exist. Labels help us in a store because they clearly tell us what is inside a package. Once we’re home, preparing the food, the labels and packaging go into the trash and the meal on our plates is a wonderful conglomeration. And that’s just how it should be.
Alethea Mshar is a Special Needs Mom and Blogger.
Read her blog, Ben’s Writing, Running Mom
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