I had an experience the other day that left a nasty taste in my mouth for days afterward. I had taken the girls to the Children’s Museum in Brookings. It was to be a pleasant day’s outing. We would enjoy the morning at the museum and then have a picnic lunch in the car before returning home. The morning started out well. Ellie and Lorelei got to do some of their favorite things. They played in the water play area until Ellie’s shirt was near soaked and they were ready to run to the play shopping area. The morning was full of laughs and fun. Until we had a run-in with another parent.

Part of Ellie’s disability is that she is what is sometimes termed as a “sensory-seeker.” She likes activities that allow her to bump into things, fall down, crash, and other hard touch sensations. In one part of the museum there is a conveyor belt that leads to a contained area that can be used for moving and dumping foam bricks. One of the things I love most about this particular children’s museum is that it encourages creativity and open-ended use of the materials. In the past, Ellie has climbed onto the conveyor belt and had someone turn the crank until it dumped her off. She will do this many times in a row if no one else is using it and she doesn’t have to take turns.

Well, on this particular day, there was someone else using it. Someone with two younger children with her. I asked Ellie to climb off so that the other children could have a turn to use the conveyor belt. She didn’t climb off. I had to ask her two more times, and then she did. I told her thank you, and that it was nice to let the other children have a chance to use the equipment. The woman leaned towards Ellie and said, in a saccharine voice, “Besides, that’s not how you’re supposed to use it anyway. Your mother should have taught you better!” Her disdain was literally dripping off of her. Even Ellie picked up on it, as she put her hands on her hips and conjured one of her most angry faces.

ADVERTISEMENT

I felt my stomach tighten and grip. My face heat up. I quickly steered Ellie away, and whisked Lorelei up onto my hip. When we were over by the window, Ellie asked me what was wrong. I told her I was feeling angry. She asked if I was angry because of what the woman said to her. I said that I was. She asked why I wasn’t going to stick up for her. Good question. Why on earth wasn’t I? I told her that it was because I was angry enough I didn’t trust myself to handle things well. Angry as I was, I recognized that if I handled things in a confrontational way it would do the opposite of what I wanted. Rather than educating someone about how not all disabilities are visible and to allow me to handle Ellie myself, I would put her on the defensive and close her off to my message. I had no idea what to do. Try to educate someone who might very well let my impassioned words fall on her deaf ears, say the words that were swimming around in my mind and would feel so good to get out, or just walk away? I wanted to tell her, “My child didn’t follow rules because of a disability; something she can’t control. The fact that you’re a five letter word rhyming with ‘witch’ is completely under your control; you just chose not to exercise any.” Which is why I chose, wisely I think, to say nothing in that moment.

Ellie looks like your typical 6-year-old. Her disability isn’t visible to the world unless you are someone who has had experience with a similar child. As her mom, I need to learn how to handle these moments. I know that not every time will the appropriate course of action be the same; still, it broke my heart to have Ellie feel that I wouldn’t stick up for her in that moment. I hope that my self-control taught a positive lesson, but I also know that she sometimes needs to hear me not apologize for her behavior to others. I refuse to hold my child up and present her as broken to the world. There is nothing broken about her. She is whole, and complete, and she is just Ellie. No apologies needed.

So, world, in the future? You be looking for us. Me and my wonderful daughter, who also just happens to have a disability. And, world, if you’re just a little too broken to accept that at face value at the moment, that’s okay. We’ll be around.