Quest for the Holy Label

Katie does not have the luxury of a label. She has a “group of conditions” with “not otherwise specified” or “pervasive and profound developmental disorder” characteristics. Try putting a label on that. Even the labeling Powers That Be in government and advocacy are inconsistent in their official terminology. They are at different evolutionary levels: Mental Retardation; Developmental Disabilities (DD); Intellectual/Developmental Disabilities.

undiagnosed

Neither does Katie have distinct physical characteristics related to a label—children with Down Syndrome have recognizable facial features and look like they are part of one big family. And she is not included in a .org support community like  Children with Autism, Down Syndrome, Fragile X, Prader –Willi Syndrome, or Angelman Syndrome. There is not a publicly recognized, organized movement with colored puzzle pieces, millions of followers on Facebook, and celebrity driven fundraisers or awareness walks for people who have an unspecified developmental disability.

The label that comes to mind most quickly for the general public is antiquated, inaccurate, and derogatory: retarded. One word labels are easier to digest. They are snapshots, blinks, for people who are not immersed in the culture.

When Katie was little I wanted to know what community she fit into. So we left our round (kitchen) table and went on the Quest for the Holy Label. After years of geneticists and lab tests and examinations we still had a group of conditions without a name. The only label we had was one they needed for education and insurance coding: profound developmental disabilities.

Now, I will tell you that not knowing a name for your child’s challenges, their Something, can create blissful ignorance.  No one tells you your infant’s likelihood of a lifetime of limited capabilities: will always wear diapers; need someone to dress her, feed her, bath her; will never learn to read, or speak, say “goodnight” or “what’s for supper” or “can I borrow the car” (yeah, we can probably all live without that last one).

Katie is now an adult. In our Quest for the Holy Label we learned that she doesn’t need a label. Her challenges–moderate, profound, or unspecified—are simply part of being Katie, they are characteristics, like her curly dark hair and infectious smile