Have you ever been out with your special needs or medically complex child and noticed someone staring? Or felt like someone was staring?
OF COURSE you have.
We all have.
But what should you do about it?
My take on this issue might be different from many, but I say let ’em stare.
“But it makes my kid feel bad!!”
But it doesn’t need to.
I personally make a conscious choice to assume that people are staring because they’re completely blown away by our awesomeness. And I teach my children this attitude both with my words and with my actions.
Whatever the situation. This is not limited to special needs or medical issues, lol.
We live our lives and if people want to look, well, it must be because we’re so amazing they can’t help themselves.
The truth is probably that they’re just curious. As common as public meltdowns, tube feeding, and suction machines might seem to those of us living this life, most people have never actually seen a feeding pump, or a trach, or a child who is so anxious about some tiny thing that they cannot possibly move on from it in that moment. And, like every single one of us, they look.
And be honest. You stare, too. “oh, I would never!” eh. Most of us stare. Not meanly. But we do. I catch myself watching children struggling in public – or, actually, watching their parents. I try to give a wink or a nod of solidarity, but there’s not always the chance. But the truth is, I’m taking mental notes. “oh, that’s a good thing to say. I should try that next time.” I stare at people with fancy accessories for their equipment. “ooo, look at how they have that attached to her backpack. That’s a good idea.” I stare at little kids wearing mini backpacks – and, as it turns out, 95% of them are just backpacks and not feeding pump backpacks, lol. Sometimes I’m looking at people simply in an effort to give a nonverbal “hey, us, too” but we don’t ever make eye contact. They probably walk away thinking “man, that lady was so rude!”
It’s NORMAL to look at things that stand out. And it’s actually a good thing, in the big picture. We WANT people to look at things that are out of the norm. A kid screaming at the park brings unwanted stares if your kid is screaming because of a meltdown, but so, so wanted if they’re screaming because a stranger is trying to drag them into their car. I WANT adults around us to look if my kid starts throwing a fit – I want them to look at least enough to determine that the situation is safe and under control.
Taking a second look at things that seem out of the norm is a self-protective feature of humans – and it’s actually something I actively teach my children to do. If something looks out of place, look at again, and look until you’ve either categorized it as unconcerning, or you’ve determined that it is concerning and you’ve implemented a plan to deal with it.
I grew up with a mom who was a Type 1 diabetic, diagnosed in the late 1950s. She got her first insulin pump back when insulin pumps first became available (one of the first in the country to get one). Back then, they were huge, ugly things. It came in a giant black case that looked like a weird, hard-sided gun holster. And my mom loved it. It was such an improvement over self-injecting. She loved it so much that if she caught people looking at it, she’d tell them what it was and what it was doing for her and she’d take off the cover and she’d show it to them. She’d give them a whole education about diabetes and insulin. People were staring? GREAT! Because this insulin pump is amazing and they should learn all about it!! They SHOULD stare at this marvel of technology that is letting me live so I can see my children grow up.
People would regret being caught staring sometimes – not because she had crafted the perfect verbal zinger to hurl at them, but because her enthusiasm about her insulin pumps far outweighed their interest. (She was a teacher not just by vocation but by calling.)
I credit that attitude on her part for helping me, all these years later, deal with staring with my child in such a positive way. I’m not into talking to strangers like she was. I’m not even that into talking to people I know. I’ll answer questions if people ask them, but I’m not going to approach people and start gushing about my kid’s feeding pump, for example. But I carry her enthusiastic attitude about medical equipment that improves lives with me, and I carry her “staring? of course they’re staring, this is awesome!!” attitude with me, too.
(I would be remiss if I didn’t note that often, we FEEL like people are staring, but nobody is, in fact, staring. I have had so many times when whatever I’m doing FEELS so weird and unusual that I’m certain people must be staring. Whether I was breastfeeding in public, dealing with vomit in public, or handling a beeping feeding pump, it felt like people surely MUST be staring. But if I took a moment to pause what I was doing and glance around, I was reassured to find that, in fact, nobody was paying us any attention. So if you feel like you’re sticking out like a sore thumb, and everyone must surely be staring, sometimes it’s good to take a moment and look around – perhaps you’ll find that nobody around you really cares, after all!)