Before kids, I spent much of my life labeling things. As a biologist I was trained in the science of naming (taxonomy) and spent countless hours looking through a microscope at all kinds of invertebrates. Each animal was labeled with a name and classified into groups. When something is labeled, we know how it relates to the rest of the world, we know how it will behave, we know what to expect. At least we think we do.
As much as my biologist brain loves labels, as a mom to a kiddo with special needs I have mixed feelings.
On the one hand, I think labeling a child with various diagnoses can be extremely useful. Often it allows the parent to gain easier access to necessary resources and support. Since Gia’s chromosomal duplication is one-of-a-kind we have been denied some services simply because she is unique; there is no billing code for her. There is no support group or even another parent I can chat with whose child has the exact same genetic makeup. We do not know how she will behave or have future expectations based on those who have gone before us. Part of me really wants to know more. It’s the biologist in me that wants a label so I can research and read about the effect of her extra chromosomes. I want to be informed and, perhaps, brace myself for our future.
But as a mom, I really don’t like labels. Too often a child with a label becomes the label. People see the diagnosis, not the child. For example, once in a while we will meet a medical professional who without even seeing Gia thinks he knows everything about her. Recommendations have been made, with of course her best interest in mind, simply because she was already labeled. Unfortunately, we live in a society where limitations are often placed on children simply due to their diagnosis. Prognoses and predictions are freely dispensed to parents like me and often they have nothing to do with my child. Our world seems unable to adapt to an individual. As frustrating as it is, I don’t see the world changing anytime soon.
I can see both sides of labeling and it’s pretty complicated. It’s my job as a mother to sort through the labels and the opinions…. and the restrictions they carry. It’s Gia’s job to never be confined by her diagnosis. To live her life proving that she is a person with an unpredictable future, just like all of us. To show the world that everyone has the potential to achieve something great and a label makes no difference.
After all, labels are for cans….not for kids!