*This article was originally published in March 2012. It has been revised and updated.
Labels Have a Place: Thoughts on Labeling Children with Special Needs
I have spent years of my life searching for answers for my daughter. I have sought labels and diagnoses because I want to know what’s going on and how to help my daughter reach her full potential. We have gotten some answers, although there’s a lot that remains a mystery. I have shared these diagnoses occasionally but have mostly kept them to myself.
Why am I not more transparent? It’s not because I mind people knowing what we’re going through. It’s more because I don’t want to be known as “the mother of the child with ________.” More importantly, I don’t want my daughters to be known as “the kid with ________” and “the sister of the girl with _______.” It happens.
We are not defined by our own or our children’s disabilities. We are people who happen to have a certain diagnosis. I love to read, write, and spend time with my family. I am a daughter, sister, wife, mother, and friend. My older daughter is a book lover like me. She loves reading and enjoys studying about animals and how the body works. She enjoys knitting, writing songs, and choreographing dances. My younger daughter, the one who needs an extra measure of love and care, loves all things pink and lots of sparkles and glitter. She loves to dance, sing, teach her dolls and stuffed animals, and create intricate sculptures from play dough. She makes up stories and draws wonderful pictures. We are unique individuals who are affected by labels, but we are not the labels.
Who do I share diagnoses with, and when do I share? I tell all the medical professionals we work with. Every diagnosis we get is another piece of the puzzle we need to figure out exactly what’s going on. The consensus seems to be that we are dealing with an undiagnosed genetic disorder. It’s critical that each specialist we see knows what everyone else is saying so we can figure it out.
Other than in medical situations, my rule of thumb is that I reveal the label when doing so will benefit my daughter. When it becomes necessary to ask for an extra measure of compassion and kindness or when she needs accommodations because a physical task is beyond her, that’s when I gently let the person know what’s going on and why she needs help. I also share when seeking support for myself or my family or when offering encouragement to others.
Most of the time, I think my daughter’s diagnoses should be like the tags on clothing—hidden, not scratchy and irritating, and only brought out when necessary to read the directions for care.
What are your thoughts on labeling children with special needs?
To read other perspectives on labeling children with special needs, click the graphic below.