The day my daughter, Julia, got the diagnosis of autism was such a strange day.
What started as a typical med-check with the psychiatrist turned into what felt like a life-changing moment. As I was trying to quickly check out at the front desk after the appointment, I happened to look down at the doctor’s notes on the bottom of the visit summary. There it was in black and white, one single word: AUTISM.
I had known for a while that one day she would probably get that “label” to add to her other long list, but I just wasn’t expecting it to happen that day or that way. I finished checking out and scheduling follow-up appointments. I got my three kids in the car all buckled up and ready to head home but then just sat there, not starting the car and picturing that one word. It was burned into my memory forever. Never to be erased.
Slowly I realized, "Ok, so now it is here. Now we do not have to wait for the big reveal!" I drove back toward home, dropped the boys off at their schools, and Julia and I met my husband for lunch. As we sat down, my husband off-handedly asked, “How was the appointment?”
I just blurted out, “Julia has autism!”
My husband’s face crumpled. “Oh, Julia, I’m so sorry, baby!”
I could see in that moment that he was, and forever would be, seeing the label. No longer would he just see our daughter.
It was then that I became afraid of labels. If a label could change how my husband saw our daughter, how would it affect the way the world saw our daughter?
It has been six years since I saw that word written in my daughter’s chart, but I can still see it when I close my eyes. In those six years, I’ve always cringed when having to say the word autism in my daughter’s list of other diagnoses. Just like all words have power to change the world, that day, my world changed because of ONE word.
When it comes to your child and their medical needs, there is no such thing as a dumb question. Here’s how I think about asking questions in medical settings as a parent of a child with a disability and a nurse.
Categories: Diagnosis & Health Care