Thoughts on Labeling

When Maizie was a baby and we knew she was not feeling well I remember thinking, "If we just knew what it was. A name. If we had the name of it everything will fall into place. There will be answers. There will be things we can do, things to change, ways to make everything better."

Once we had a "label" I always felt hopeful. I knew that information was power and with it I felt powerful. Over time the first label was not fitting, and then the second, the third, the fourth, etc.

With each label I read books, I studied, I taught others, I interviewed doctors and professionals, I looked for the best help we could find.

Each time...nothing changed. What was I expecting to change? Did I want Maizie to be "normal"? Sure we had medications to try, therapies and behavioral strategies. What exactly was it we were looking for? We were searching for answers to help Maizie feel better. That much I knew for sure. I wanted her to be able to play, to speak, to answer questions, to laugh and run and play. Making it through a day without being in pain was certainly something I wanted for her. I wanted her to have a childhood like I had.

Whatever label we had did grant us a certain power of sorts. It led us to a certain doctor who would in turn give us ideas or medications to help Maizie. Some of the medications helped and some did not. At times there were the doctors who knew nothing, who caused more trauma and damage than I could have foreseen.

All of this I never wanted to put Maizie through. I never wanted to put Joe and me through it. But, it was that way. I can't see it going any differently. The searching, the sleepless nights, watching Maizie in pain physically and emotionally for hours...for days. How can a parent watch that and not search? It is impossible.

And yet. When it gets right down to it...Maizie is just Maizie. She can not be categorized. One can not say, "See! She is just like this child here or that one there. Do what we did for this child and it will help her exactly the same!" Like everyone else in this world Maizie is her own person despite her diagnosis. What works for one child or adult may not work for another.

Maizie's medications don't change who she is. They are not some miracle potion that make her find her words, stop her anxiety, insomnia, migraines and inability to withstand certain noises or situations go away. Her medications are a tool. A tool that must be researched, reexamined and thoroughly evaluated on an ongoing basis.

Maizie is not her medication. She is simply Maizie. A child who is simply that. A child.

I continue to question the labels we use. She needed a label in order to get schooling where she is taught using alternative methods. Labels that determine the correct medications to treat her pain are very important. A label was necessary for her to get proper care in the hospital when the nurses insisted she could withstand having a roommate when it was beyond clear that she could not. I could go on and on. Our lives revolve around these labels. I have fought for these labels and I fight for others to see beyond them.

We rely on labels to move forward. And yet every day I am with Maizie it becomes more clear to me that yes, we rely on these words, these categorizations for help...but she is not at all what they define. Maizie is Maizie. My daughter. A child.

We are a world full of people wanting to put everyone else in a category, a slot, a box. People say, "Oh, if we can just get this one part of this child under control....if we can just figure out what makes this one tick like that when I want so badly for her to tick like this...why can't she be more like this or like that? Maybe if we call it that or this we can make it stop. Maybe we can change her to be more like that child or more like me?"

A label...is a label....is a label. My child has a whole list of her intended labels floating around on charts, graphs, medication bottles and IEP's.

The world wants to squeeze her into a box. Make her fit in. Push her this way and that. I just want her to be a kid. And yet, there they are...the labels. Our society is obsessed with them. I certainly have been as well.Maizie is big into the classification of flowers. She carries a book with her wherever we go. If we cannot find a particular weed or flower in the book she makes me search endlessly for it online. She says, "Keep looking mom. Don't give up. I know you can find it. This flower has to match something."

I took these photos as Maizie was diligently trying to classify a dead Black-Eyed Susan she had picked for me. You can see it all wilted in the background. Once she found it she said, "Yes! It fits in right here. See....this flower is just like that one. It has a match. Did you know that mom?"

Immediately when she said that I was struck with how a flower can be categorized, drawn and labeled. It has a place where it fits, where it grows and it needs a certain amount of water and sun. The list seems so easy. The labels so fitting.

This is not so for my Maizie. Her labels don't define her. They say little about who she is. Bits and pieces may seem fitting.

Finally, I don't seek out labels anymore and I accept that current labels say very little about who she is.

New labels change nothing.
Josephine Lawrence, Let Us Consider One Another (1945)