Beyond the R Word

Note: March 6, 2019 is Spread the Word to End the Word Day. Find out more here.

For many years now, the medical community at large has made the R word obsolete from its vocabulary. In its place are umbrella terms such as special needs, intellectually disabled, and developmentally disabled. To be more politically correct and socially acceptable, many laypeople are adopting these terms to describe things/people they perceive as dumb or stupid…much like the R word. It is not funny and it does not make you edgy or cool.

My daughter Jaylyn is five years old. Her last speech evaluation score put her at a 15-20-month-old level for expressive speech. Receptive speech? Just a bit below her age level. So it could be very easy to assume a lot. Yes, she has been made fun of, called the R word, and shunned by neurotypical peers.

The derogatory use of these words by adults paves the path that our children will take. With anti-bullying campaigns being in the spotlight, is it too much to ask that my child be included? The use of these words and phrases in a derogatory manner normalizes common misconceptions about the disabled community.

During a routine ophthalmology appointment, some eye-opening assumptions about my daughter were made. It was assumed that her speech deficit was a reflection of her intellect. Cue the teaching moment! She has seen the same amazing doctor since she was a baby. When it came time to assess Jaylyn’s vision, the doctor busted out the baby assessment tools, consisting of identifying the same four shapes in various sizes. Jaylyn knows her shapes, colors, letters, numbers, is showing signs of reading readiness, and is learning addition. The doctor was surprised. Her assumption of Jaylyn’s intellect and reaction to Jaylyn’s abilities stung. Moving forward, Jaylyn’s exams will be age appropriate.

Being a mother as well as a nurse to those with various challenges, this experience really made me reflect. Being a nurse has made me a better mother and advocate, and being Jaylyn’s mom has made me a better nurse. Each role has put me in the unique position of being able to understand both sides. That being said, I implore you to treat these children with the same dignity and respect you would want for yourself and your own children.

Do not define them by their disabilities. Most importantly, do NOT assume because someone has a disability or communication deficit (child or adult), that he or she does not understand you. Jaylyn loves pretend play and will often don a scrub top, gloves, and a stethoscope. When you imply that she is a nurse like her mommy, she will quickly correct you and inform you that she is a doctor. Whether or not this dream will ever become a reality is not my place to say — it is hers. After all, the experts have underestimated her thus far by giving me a long list of things she will never do. She has accomplished many of them already. Reach for the stars baby girl!