Health Kids

The Question I Dread as a Special Needs Mom

The Question I Dread as a Special Needs Mom www.herviewfromhome.com
Written by Krista Metz

The moment I had been dreading happened yesterday.

My son and I had just ridden a carousel at the mall. I was buckling him into his wheelchair, which was positioned by the carousel operator’s station, so she could keep an eye on it while we rode. As I buckled his chest harness, I heard her voice from behind.

I turned and smiled politely, not catching any of what she said. She repeated her question.

“What’s wrong with your son . . . if you don’t mind me asking?”

I hesitated, looking at her, still hunched over. My hands had paused on the buckles of my son’s harness. In a matter of seconds, I was planning out what I was going to say.

“What do you mean?” I asked, a little more roughly than I intended.

She repeated the question again. “What’s wrong with him?”

I wondered if she caught my wince. It felt like a dagger had sliced my heart, not once, but now twice. I paused, started messing with the buckles again. My son looked on, across the food court, seemingly oblivious to this conversation taking place.

“Umm . . . we don’t like to say ‘what’s wrong with him,’” I said, turning to her. I knew I had to look her in the eyes, as much as it hurt. “Because there’s nothing wrong with him.”

Her eyes saddened. Perhaps because she realized her words had hurt me, or maybe because she pitied me. Us.

“I’m sorry,” she said simply.

“It’s OK . . . He has hypotonia. Low muscle tone.”

And my son and I sped away across the food court.

When we stopped, coming to the parking lot outside, I realized my hands were shaking.

This wasn’t the first time someone had asked me this question—the “what’s wrong with him” question. There had been a few times, when Roland was a baby, inquisitive strangers had approached us and asked. But that was the difference between then and now: Roland is no longer a baby. He is a three-year-old, one who happens to be very observant. Although he is speech-delayed and very quiet, I have no doubt he understands much of the conversations going on around him every day.

My hands continued to shake as I loaded Roland into our van. I replayed the conversation over and over in my head. I winced at her words as they echoed in my head. I winced at the thought of how curt I had been with her, and the look of sadness that had come across her face and eyes.

I looked at my son, who was quietly waiting for me to put up the wheelchair ramp and get into the driver seat so we could go. Did he understand what she just asked? Did he even hear her? I prayed he hadn’t.

The truth is, I will never know (or, at the very least, not anytime soon) if Roland heard that woman and that question she had phrased so awfully. But I hope that if he did, what I said was enough. I hope it was enough to show him that there is nothing wrong with him. That his disability is not a fault in my eyes, and should not be seen as a fault by anyone. It is simply a part of him, something that makes him different from others—a side note to an amazing kid.

And I hope it was enough to show that woman words hurt. The way we phrase otherwise well-meaning questions is everything. Please never ask “what’s wrong” with a child. Instead, if you are curious about their medical condition, try phrasing it a different way—a kinder, subtler way. I’m sure most parents would be comfortable telling you about their child and raising awareness for their condition. And then I’m sure they will be happy to tell you all about how their child’s disability is actually the least interesting thing about them.

About the author

Krista Metz

My name is Krista Metz, and I’m a stay-at-home mom to two beautiful little boys, one of which has a disability. I write about raising a child with special needs, mothering through depression, and other amazing feats. You can read more of my work at www.raisingroland.wordpress.com and The Mighty, and follow my journey at https://www.facebook.com/allthingsconsideredblog/