29. Awareness
April 18, 2023
I received a “God bless you” the other day from an elderly man who was in line behind me and my son at the pharmacy.
My prescription wasn’t ready, so I had to distract my son with reading labels on the shelves along the aisle, monitoring his patience, explaining and re-explaining that we needed to wait. On this day, he was doing fine – pacing, spinning beads, bouncing on his toes, leaning into my face with the question in his eyes, can we go, now? but not yet forcing the issue.
The man behind us got his meds and pushed his shopping cart past us. “God bless you,” he said, with sad eyes and a serious expression.
God bless you. People say this as shorthand for: Wow, you’ve got your hands full, or I see the hard work you’re doing or I’m praying for you because you really look like you need it.
Sometimes, in our special needs community, these kinds of comments from outsiders can rankle. We feel the need to educate, tell others that our children are not burdens, that we are parents much like other parents, just with some different issues and perhaps more complicated lives. Even when the comments are offered with kindness, I can still feel an urge to clap back and say, hey, that’s my child you’re imagining as less than. He is so much more than you are seeing.
I always assume when I am out with my son in public spaces that I’ll have to interpret his movements for others, safeguard him from misunderstandings, reluctantly answer for him when a young waiter calls him Bro and asks if he wants a refill. On days when regular errands feel challenging with him in tow, I am buoyed by my belief that – whether his mood is good or not-so-good – he belongs here, with us, and our community needs to see and know that. I try not to apologize for his presence, and if I am able to model an easy-going acceptance of his behavior, others might see that his spinning beads and verbal “stims” aren’t hurting anyone.
So, when I heard “God bless you,” I smiled at the man cautiously, trying to gauge the correct response since I hadn’t just sneezed, and mumbled a thank you.
He fiddled with the loose mask he wore and replied, “I have a grandson with Fragile X.”
Oh. He wasn’t judging from the outside. He was seeing something familiar in my son.
“Oh, you do?” I said, and we nodded at each other.
Fragile X, a genetic disorder that causes developmental delays, intellectual disabilities, and an increased likelihood of autism spectrum disorder, was the first thing my son was checked for (with negative results) in the days after his diagnosis.
I understood that this man’s son or daughter was getting his prayers, too.
This man knew something about the days when a God bless you feels comforting, when our kids are struggling and we’re tired, unsure, scared, and working hard in support of them. Like when they pick up Covid and you have to care for them while you’re sick, too; or when a sedation dentistry appointment for a regular cleaning turns into a procedure for extracting an abscessed molar and an impacted wisdom tooth, and all of the post-op instructions of no straws, no crunchy foods, ice on cheeks, and medications to be crushed and administered get layered on top of all our regular worries.
I should know by now that when my son comes with me into the community that more people will be willing to give him room. The CDC’s latest autism numbers have risen to 1 in 36, after all.
Many more people know of my son, even if they don’t know him. Someone they love is similar.
Someone like the grocery clerk at a different store earlier that week, the one I could hear from two aisles over, loudly describing all the different types of eggs and which ones were less expensive today and why. As I approached to grab a dozen eggs for myself, I saw two or three women nearby, listening and choosing what to purchase, and I felt so grateful that this young man had a job, was putting his memorization skills to good use, and that the customers were being kind and not dismissive. No one rolled their eyes. No one interrupted him. I smiled and he grinned openly back at me.
Our communities are becoming more inclusive, I think. More aware at least.
At the pharmacy, the gentleman with the special needs grandson walked away before I could find out more about his loved one, how his disability manifests, how old he is, where he lives. This grandpa’s demeanor suggested that he was heavy-hearted for his family, that he wasn’t seeing my bouncy, bead-spinning young man and my careful corralling of him, as a positive reflection of his family’s life.
I called after him, something awkward like “We’re OK!” – trying to lighten his mood, give him some solace about this thing that we two strangers share, to say we’ve got this. I wanted to thank him for his gesture of support and to God bless him in return, for carrying compassion for his child and grandchild, and for extending that care to us, too.
No matter how it’s said – and whether it’s “Autism Awareness Month” or not – we all could use some of that tenderness.
❤️