Finding my voice...

While I certainly don't know everything about having a child with a disability, our family has been challenged. Our daughter benefitted from receiving early intervention services in Henry County and one of our sons had cornea transplants as an infant. So, I do know a thing or two from a first-hand experience.

As a social worker and teacher of students with special needs, one might think that my husband and I were better equipped to make it through the maze of medical professionals, clinics, insurance paperwork, and multiplicity of appointments! Well certainly not initially. We were a typical family! Confused, scared, tired, frustrated, disillusioned, angry, protective and deeply in love with our children.

You must know that as a young professional, I was naively confident that I demonstrated compassion and empathy for the families I served. Oh my! There is nothing like experience to give one a healthy dose of humility!

I felt patronized and de-personalized every time that I was called "mom" by people I had barely met. Why couldn't these perfect strangers call me by my name?

I grew impatient with having to tell our story repeatedly to one person after another who entered the exam room. Why couldn't they talk to one another or read the chart? Heaven knows that we filled out a million pieces of paper and wrote down our parental concerns dozens of times!

Why did everyone speak Latin until they realized that we knew what they were talking about even when using their medical jargon? Those were the only times that our professional backgrounds came in handy by the way.

Why did we always have to hurry up and then always have to wait?

Why were my children referred to by their diagnosis? As he was pointing to my four week-old baby boy, one specialist actually said this, "Well, what we have here is a genetic defect." Yes. He actually said that. I cried. And I found my voice.

Even though these were some of my toughest moments as a parent, they provided me with the greatest lessons for me as a professional. Far greater than those learned in the classroom. I learned that I wasn't as compassionate and empathic as I had thought.

Have you learned your greatest lesson? Have you found your voice?