How to Live With Labels Without Living In Fear (Living with Labels Series Part 1)

Posted On October 3, 2022

To Diagnose or Not Diagnose?

In both my professional and personal life, I have always held mixed feelings when it comes to labels. For the sake of effective communication, I recognize some form of a descriptor is necessary at times. Still, I dislike the idea of “categorizing” humans as though we are objects to be separated neatly into tiny boxes.

Personal labels can include our roles (i.e., mother, sister, teacher, and friend), our values, and the choices we make based on said values. All of these comprise one’s identity, but they are only parts of the whole. Sometimes we choose these labels. Sometimes they are chosen for us by parents, peers, or even society at large.

When it comes to diagnostic labels, I am even more conflicted. My child has Developmental Coordination Disorder (DCD) but he is not DCD just as I am not hypothyroidism. DCD is a part of who he is just like his green eyes and curly hair. But it is only one part.

As a mom, I have faced my own inner struggle with the process of having a label follow my child on his permanent medical record. Like most parents, I have wondered if having such information as a part of his private, yet ubiquitous health information would somehow impede him in the future.

And yet, I also knew the label, in general, was a “necessary evil.”

If I did not pursue the diagnosis, then:

How could I expect to increase awareness of Developmental Coordination Disorder (DCD)?

While a commonly occurring condition (prevalence rates are estimated between 1 in 20 to possibly 1 in 10 individuals fit the criteria for a diagnosis of DCD), very few medical, educational, or other treating professionals have heard of the disorder.

How could I help account for an accurate prevalence rate of DCD?

Due to low awareness, DCD is often misdiagnosed as other conditions such as ADHD or Autism.

Without an accurate prevalence rate, how could I help promote early intervention?

While DCD is a lifelong condition for which there is no cure, early intervention is key to long-term positive outcomes. However, inadequate or inaccurate intervention efforts (based on either misdiagnosis or lack of awareness or training) are unhelpful at best and costly at worst.

If I wanted to promote early intervention, how could I work to ensure coverage for crucial support services?

After talking with many fellow parents of children with DCD over the years, I heard my family’s story echoing time and time again. Uninformed providers, lack of care, and denied coverage for care.

If I wanted to ensure coverage for care, wouldn’t I need to petition insurance companies to cover the diagnosis?

Not every family is as fortunate as we have been. When our insurance companies (yes, more than one) denied claims for occupational and physical therapy services for our son, we paid out of pocket.

How could I advocate for IDEA to include DCD under its umbrella so other families who may not be able to homeschool or pay out of pocket could receive care and educational support?

Educational supports for children diagnosed with DCD vary greatly, both here in the U.S., in Canada, and in the U.K. Through my conversations with fellow parents, some families have been incredibly fortunate to receive Individualized Education Programs (IEPs) for their children (under the designation of Other Health Impairment) granting them protection under the Individuals with Disabilities Education Act. Such protections allow for modifications and accommodations of instruction to enhance learning and promote academic success. Other families have had slightly less support offered through 504 Plans. And many, have been in a much smaller, leaky boat without life preservers, where there is no such support granted. It was my personal awareness of and professional experience with this sinking ship scenario that contributed to my family’s decision to homeschool. It is also the reason I advocate for the inclusion of DCD under the umbrella of IDEA.

Bottom Line: How could I help prevent other children from falling through the cracks?

As my husband and I weighed the pros and cons, we felt this decision was “bigger” than us. We made the best choice for our family based on the information we had at the time.

We chose the label.

The decision to pursue a diagnosis, any diagnosis, should not be taken lightly. It is every family’s personal choice. For our family, we felt the benefit of receiving services and support outweighed the costs of the label itself.

Overcoming the Fear of Stigma

For the most part, I am a gentle soul. Jovial and friendly, I look for the good in people. Humor is my default setting when faced with strife.

But mess with my cub, and I become a lioness.

Of course, we want to insulate our children from all the hurt and pain in the world. As parents, it is our natural instinct to protect. Knowing we can’t, builds anxiety, tension, and insecurity. A trifecta leading to fear. Fear not only steals our joy but can also cloud our judgment.

So how do we overcome this fear?

The short answer is, the same way we would conquer any other obstacle. We face it head-on.

As a therapist, I know anxiety can cause our “thinking brain” to temporarily take a vacation as it sends us into “survival mode.” We briefly become incapable of logical, rational thought.

We want reassurance.

We want to feel safe.

If I attach this label to my child, how will the world treat them? How will they treat themselves?

For our family, it all comes back to faith. For us, faith means never having to walk alone in this world. It means remembering WHOSE we are is bigger than WHO we are.

We Are ALL Fearfully and Wonderfully Made

For You formed my inmost being; You knit me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made.

Psalm 139:13-14

Our Heavenly Father does not make mistakes.

We are the living reflection of our Creator’s appreciation for diversity!

Loving one another, loving ourselves, and teaching our children to love themselves is to impart to them the beauty of God’s unconditional love.

Appreciation for diversity, including neurodiversity, is paramount. How we communicate and interpret differences to and with our children is crucial.

In our home, we have always preferred to view things from a strengths-based approach. We are all blessed with different gifts. If we were all blessed with the same gifts, the world would be a pretty dull place.

Help your children discover their strengths and their gifts. Along the way, you will discover your own. Grow in your gifts. Nurture them. Nourish them. Reap the harvest of their power so that you may bless others with them. We can all be a blessing to one another in one way or another.

Coming Up

Join us next week for Part 2 of our “Living with Labels” blog post series, “Obtaining an Evaluation.” We share with you the steps to take should you need to seek a professional evaluation for your child, as well as a little-known tip to help families with special financial circumstances access evaluation services at a reduced cost.

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Blessings,

Kimberly

IOH Mom

This website is not a professional counseling website and nothing here should be construed as professional counseling advice. Although Kimberly Bennett, LPC is a Licensed Professional Counselor, she is not your counselor, and no counselor-client relationship is established unless she has signed an agreement with you. All information provided through this website is for informational and educational purposes only.This post may contain affiliate links. Please read my disclosure statement. Thanks for visiting!