The Mighty Logo

"Christmas is a time of year for all to enjoy, babies or no babies."

The most helpful emails in health
Browse our free newsletters

My 6-year-old son can’t see, walk or talk. He has a few signs and some sounds I can interpret, but it’s hard for him to make us understand his needs and wants. It’s hard for him even to know what the possibilities are. He can’t tell me when he has a headache, had a tough day at school or when he wants me to stop talking about a sensitive subject. He can’t tell me what his favorite flavor of yogurt is, that something funny happened on the bus or that he wants to play his harmonica. The people who love him — his family and his school family — have become pretty good guessers, but we are almost always guessing.

Sometimes he gets frustrated, and that’s why he digs his fingernails into my hands and arms and leaves marks. Sometimes he pulls my hair — hard. It hurts, it hurts my feelings and it’s embarrassing. More than once I’ve had a big scratch on my nose, and people would ask me, “Did the cat do that?” I would just nod yes.

Therapists suggested that I make a spreadsheet and take notes to figure out a pattern of his “behaviors.” I don’t, though, because when he gets into a “pinchy” phase, he does it all the time for weeks at a time. And then one day it’s over.

One day, I picked him up out of his bed and expected to feel the usual pain from his pinching. Instead, he just snuggled with me. No pinching, no pulling. Both of us were relaxed.

When it started again, I tried using the language his teachers suggested: “Gentle hands.” I’ve tried putting him down as soon as it starts and holding his arms against his sides. To be perfectly frank, I’ve tried yelling. I have tried telling him, earnestly, that it hurts. And I have tried telling him it hurts my feelings, which made him cry bitterly. He understands so many things he can’t talk about.

Last week, after about six blissful pinch-free weeks, it began again. I told my husband, “This time, I’m going to pretend it’s not happening. I’ve tried everything else. I’ll protect myself, but I won’t say anything.”

I stuck with it for the most part, except for a couple of involuntary ouches. Then I noticed he wasn’t pinching as much. One morning, I picked him up, and he ran his fingers through my hair. He pulled them back out and placed his hand gently on my cheek. When we see his neurologist, I always tell him that my son is making progress, and he wants examples. This is the kind of proof that is difficult to describe to a doctor, but they’re signs that my son is learning self-control.

We all have these things we don’t want to do and don’t mean to do. Sometimes we have no good way of getting our hurts and hopes and feelings out. If we are lucky, someone makes a safe space where we can learn. I try to keep myself safe, but without holding back, without shying away.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Originally published: May 18, 2015
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home