We’ve been doing a lot of treading water in my family these days. Rowenna’s therapy has been incredibly transformative (more in future posts) but exceptionally time-consuming. Afton has been on her own diagnostic journey, which has left us with a lot of bills and not much in the way of answers, and has a sleep schedule that I can only describe as torturous.
In the last few months I’ve written several posts about the curious sensation of merely…existing, but nothing sounded quite right. Nothing captured the preciousness of the little moments I have with my girls even as we all go through each day terrifically exhausted. I’ve been posting here and there on Facebook about these little gems that stand out and sparkle in my day – the way Rowenna will so gently reach out and rub Afton’s head, the way Afton so adamantly says “ahhh done!” while signing “all done,” so sure of herself.
So on this first day of Developmental Disability Month, I’m going to just jump back into blogging. Maybe some of the last few months will float to the surface here and there, and maybe not. I’m sure if it’s important enough I’ll find the right words and hit “post.”
I’ve been at my part time job a few months now. I was kept on past the temporary seasonal period and received a small promotion. It’s nice to be somewhere for a few hours a week and have absolute confidence that I know what I am doing. (Motherhood has been an entirely different story.)
The other night, a woman came in with her adult daughter. The daughter was wearing noise-cancelling headphones and had some very loud vocal tics. I approached them to give my usual “welcome to the store” routine, but stopped short when I saw the look in mom’s eyes.
I know that look. I’ve seen it on others, and I know it’s been mirrored on my own face from time to time when Rowenna is having some difficult moments in public. It’s the “let’s not make a big deal out of this, she’s my daughter and we deserve to be here” look. Mom started to explain some of her daughter’s behaviors and had that tone I also recognize – a speech well-rehearsed, equal parts patience, hope, and absolute annoyance that the world expects you to give the speech at all.
I told her it was no big deal, that it was just how her daughter rolls. I told her that she and her daughter were welcome in the store, and mom started to cry.
If you ever wonder why I advocate, why I write, why I sometimes spout off and dig in my heels, this is why. Because there are families out there who have been told too many times that their children are not welcome. In 2015, we still insist on othering and distancing. Sometimes it’s subtle – we look away, ignore, hurry through a transaction. Sometimes less so – jeers, rude remarks, bold-faced requests to leave the premises.
I don’t want that for Rowenna. I don’t want that for anyone.
Mom and I ended up having quite the conversation after I told her about Rowenna. She let her guard down in that way special needs moms often do when we show each other the membership card. Mom left with a smile and her daughter seemed to enjoy browsing the store for a bit.
There is still so much work to be done. A mom should not cry because someone extended her a pretty basic courtesy: that she was “allowed” to stay in a public space, to select goods and pay for them.
At the heart of it all, the solution has nothing to do with disability. You don’t need to have a loved one with a disability to understand. You just need to be open to the idea that when people are different than you, they are still people. The golden rule applies: treat others as you wish to be treated. Offer a smile, a welcome. Extend the same courtesy you would to anyone.
That’s my request of you for this month, a month dedicated to developmental disability, and a month that will also bring us World Down Syndrome Day: treat others as you wish to be treated. I promise to do the same. And you’re all welcome at my store!