Maya’s Undiagnosed Life
I love reading Uncommon Sense and so much of Dana’s writing I not only enjoy but can relate to. Her daughter Maya has an undiagnosed disability.
Here she speaks about simply relating to other parents:
At times I’ve wished for something with a name. At least “Down syndrome” would be a label that people could understand. It’s hard to go to music class, or the pool, or anywhere where we often see the same groups of parents, and not have a way to clear the air. 12 and 13 month olds are running around the room in circles, and Maya (21 months) bounces in the middle and laughs, but she doesn’t move (unless the door is left open, and then she crawls with lightening speed). I’m sure people wonder. But I have no words to break the ice with . . . at least no easy ones. And I’m not going to launch into a whole “Oh she has delays” speech. I just need a soundbite, something that shows that she’s different, I know it, we’re able to laugh at ourselves and take things in stride and with grace, and let’s move on to chat about something more fun. I’m bite-less.
There’s something about a common language, a short cut. Without a diagnosis, Aidan can become a description of negatives:can’t walk, can’t talk, drools, doesn’t eat independently. Dana remarks that
I wouldn’t want to walk into a group of new people, shake hands and say “Hi, I can’t run, can’t jog, can’t do push ups, can’t write without starting every other sentence with “and”, and can’t do mental math if the problem involves a lot of 7’s. Oh, and my name is Dana.”
The thing is, I fully understand that having a label can be challenging as well. “Your child has Down Syndrome so I won’t be able to understand her speech, right?” ” Your son has CP so he’s not walking, right?” Labels shouldn’t be limiting, but they are. Labels shouldn’t lead to generalizations, but they do. Each child’s individual accomplishments should be acknowledged and celebrated.
The bureaucrats really want us to check that box…..