“It ain’t what they call you, it’s what you answer to.”
― W. C. Fields
I’ve never been one to prescribe to labels. Fact is, I abhor them. And so should you. Think about it, labels begin back when we are but wee babes. Little Johnny, for instance, is either quick or slow to walk and talk, either a cuddle bug or wildly independent, friendly or shy….athletic, artistic, or else, a thinker. By the time he enters school, his path is set. The poor kid doesn’t have a chance. He’s been labeled.
“Once you label me you negate me.”
― Søren Kierkegaard
If your child has special needs, though, those labels become abysmal. With each new diagnosis comes a boorish exploration into unchartered territory fraught with ambiguity…laced with immeasurable fear. While it may be delightful to dream of little Johnny as the boy whose traits will one day lead him to Cornell’s prestigious architectural program….it is not so pleasant for a parent who worries about how society will treat her child who has Down syndrome or Autism when he reaches adulthood. Will he work? Will he have friends? Will he remain healthy? And the dreaded…..What will become of him if I die?
Because there is such a tremendous learning curve and so much uncertainty attached to each one, working through labels is beyond difficult. For example, “Apraxia Of Speech”, simply put, indicates that a child cannot communicate verbally. But that label does not necessarily imply the child will never speak…just that he is not speaking with words at the moment. While therapeutic techniques will help some children with Apraxia, those same techniques will not even budge others who have the exact same diagnosis.
And this is where labels morph into daggers, stabbing away the joy from life.
Picture this conversation:
Mom #1, trying to be helpful: “So, your daughter has Speech Apraxia? Have you tried sign language, speech therapy, communication apps, and PECS?”
Mom #2, feeling frazzled beyond definition: “Yes, I have tried it all.”
Mom #1, showing a bit of doubt: “But were you consistent with it? Because MY child used to have Speech Apraxia too, but when I was consistent, making sure to spend focused time each and every day working on all the techniques suggested by our therapists, MY child started speaking.”
Mom #2, now feeling like an utter failure: “Yes, I assure you , I am consistent with all of it.”
Mom #1: (offers a pity grin before walking away)
See? The proverbial “pecking order” is alive and well in the special needs community as well. Not only is the special needs child labeled within the typical community, but he is also labeled within his own community. Measurements such as high functioning, low functioning, and spectrum are bantered about as if those words are describing an “it” instead of a “child”. And it is degrading. Dehumanizing. But worst of all, labels serve to desensitize a society toward those who need kindness, generosity, and acceptance the most.
“I am a rare species, not a stereotype.”
― Ivan E. Coyote
As the mother of two children who have been labeled with more junk than I have time to list, I wish to suggest we embark upon a new adventure together. Doctors, Psychologists, Psychiatrists, Counselors, and Therapists are always going to utilize labels since that is what they have been trained and are paid to do. However, as parents, we have a choice to NOT become entangled in the webs they weave. Because, honestly, what does a label really mean? My children are simply “who” they are. A name or a diagnosis does not and should not ever define them.
Hope, for instance, is neither Down syndrome, Speech Apraxia, or a heart defect.
She is a nine year old little girl who dances with abandon to every Taylor Swift song and who giggles until she can’t breathe when her tummy is tickled. She can dribble a basketball better than many young athletes her age and is mischievous most all of the time. When I’m hurting, she instinctively knows, and pulls my head down upon her shoulder to comfort me. She wants my fingers to interlock with hers when we hold hands, and her favorite food is french fries. Hope is very much a person. She is not a label.
“I read in a book once that a rose by any other name would smell as sweet, but I’ve never been able to believe it. I don’t believe a rose WOULD be as nice if it was called a thistle or a skunk cabbage.”
― L.M. Montgomery, Anne of Green Gables