So this is how it happens.
Now I know.
Several times a year, a story will rack up tens of thousands of social media shares amongst special needs families and our greater community. Some child or young adult will have been asked to leave an establishment because someone deems them scary, or dangerous, or whatever.
Today, I saw how that type of scenario happens. Late morning, I drove Grace and I to the park for a walk. Grace never met a restroom she didn’t like. So it was ritual for her, before we embarked on our climb, to use the toilet. For a really long time. And then proceed to wash her hands. For a really long time. And, it is not unusual for her to wash them a second time. During this common routine, I sit directly outside the restroom on a bench and look at. Social media. Or read news. Or edit pictures on my iPhone.
This morning, I looked up from yet another story about Donald Trump and saw a woman sort of backing out of the restroom. She stood there looking at the open door. I thought, “Oh, no. What did Grace do?” So, I asked the woman who looked a bit alarmed, “Is there a problem?” She looked at me and said: “Is she ever going to come out of there?! Is she going to just stay in there?” About that time, Grace comes out with a dimpled grin, and looks at the woman and then at me and then proceeds to go back in. “There she goes again!”
I looked at the woman and said, with a bit of disbelief and a touch of exasperation:
“She has autism.”
“Well, she’s just standing there washing her hands. She’s already washed them twice! “
About that time a toilet flushed. “There she goes again!”
I happened to have seen another woman enter and I suspected that toilet flushing was done by her, not Grace. (I later confirmed this to be true.)
“Well, it’s frightening to people when they hear this and they don’t know what’s going on!”
About that time she turns toward the parking lot and waves me off saying: “OH, YOU DON’T CARE, ANYWAY!” Then she turns around and proceeds to walk the opposite direction, this time towards the hiking trails. I call out to her:
“I’m her 24/7 caregiver and I’m just trying to take a little….”
She was hoofing it onward and not intending to hear any of it.
I could describe this person’s appearance. A good storyteller would do that. But in this instance, it would seem unkind, discriminatory, or sexist. But I’ll just say she was a bit goofy looking amongst other physical attributes.
And, as I watched her stomp off into the forest, my adrenaline levels surging, I said to myself: “This is not about you. This is about her. Don’t let this goofy woman with a bee in her bonnet ruin your day. Or, your morning hike in this mild-weathered fall weather.”
And I didn’t. That’s what 22 years of parenting a loved one with autism will teach you. Crap like this happens. It sucks. Don’t carry it with you. That’s particularly hard when the diagnosis is new. And sometimes still hard when the diagnosis is even a decade old.
But as we eventually began our hike, I thought about all the stories of people reacting out of fear, misunderstanding, or ignorance to an individual with autism or another disAbility and creating a public spectacle. This could have been one of those times. I thought about what if the park office had of been open. Well, those rangers have seen Grace come to the park since she was a toddler. The woman wouldn’t have had a case with them. And most park employees have seen their share of differently abled children. They would have known and allayed the woman’s fears. But a different place and different time, with a set of total strangers, maybe we might not have been so lucky.
By the time we got to the top of our longest hill and curved along the leaf crunching path, Grace was asking to “SIT-DOWN! SIT-DOWN!” I urged her to keep walking until we got to the nearby bench with a beautiful view of the meadow. I’d planned to do my meditation then and a few yoga stretches because the morning’s routines were rudely trashed when Grace began getting up frequently from 3:30 AM until I threw in the towel at 6 and got up with her.
Upon our approach, as I eyed the seat of the bench, the beautiful grain of the wood that invited me to perch upon it, I thought: I could meditate love to this woman.
But I didn’t.
I shortened the meditation and skipped the yoga as Grace was uber anxious to get back to the car, and alternated requests to “GO RIDE CAR!” and “BATHROOM! BATHROOM!” And as I assured her we were headed there, I thought of all the ways I could have responded to that woman.
I could have called her rude, insulting names descriptive of her appearance, or hurled obscenities. (As it happened, I slung a victim card at her. Again, to no avail.) I could have down around of playground pouty and really ramped up the pity points: “I’m a single mother. She no longer receives any services and is no longer in school. I’m just taking a break from her for a moment or two.” I could have explained that Grace is a bit obsessive compulsive and she’s got a routine of washing her hands twice. I could have explained, she’s got the mind of a child and one of her loves is to play in the water. Individuals with autism delight in the feel of water. They may find it stimulating or relaxing. Of course, none of those would have resulted in anything but hostility. Just as, she accused me, she didn’t care anyway. Or, at least didn’t seem to care.
I could have practiced compassionate communication and said to her:
“I’m sorry you were disturbed. My daughter has autism and I was just taking a break. This is her odd little routine.”
But, I’m not gonna shoulda-woulda-coulda myself here. The compassionate communication option would have been ideal. And I do apologize often to people. Truth is, like many families, I’m frequently chasing Grace with a hypothetical towel to clean up some socially awkward or inappropriate interaction. It happens. Hello to life with autism.
And then there’s your reaction. You, the reader. At the moment that I’m writing this for catharsis and because I need to exercise the creative writer in me for the nourishment of my soul, I’m debating whether to just post this one on Facebook, like I’ve mostly done this summer or to actually go to the trouble of publishing it on my blog. I’ve never done the work needed to deck out my blog and get it the reader audience it deserves. I’ve never chosen or made or had that kind of time. I prefer sleep and rest on the flip side of managing Grace’s life. So, it won’t have much of an impact there anyway. I’ll attempt to find a work around Facebook algorithms so that it will be seen in others’ feeds. But about that reaction thing.
Folks love to judge. And parents like to crucify. And you’d think special needs parents would have a little more empathy with one another. Obviously, I’m not so concerned about the haters as I’m sharing this anyway. So, the parent rhetoric would/will go, I should never leave her alone like that.
Maybe. Probably. Yep.
I should hire a behaviorist to fix this behavior.
Don’t I wish.
I watched a friend shepherd her special needs loved one at a very public event the other night. Fact is, we just all manage this the best we can given whatever circumstances, tolerance, and temperament we arrive with to each moment in our lives. Shoulda-woulda-coulda—not.
I’m glad that I’m living in the here and not the then. I’d of lugged that weird woman with me all day long, back once upon a time. From the eyes of age and compassion, I can see she had something in her crawl for reasons that I will probably never know and weren’t anything to do with me and mine. And knowing that is a step toward compassion. And, I’m not gonna whack up my insides should-ing myself about saying something better to her than I did. Or that I shoulda-woulda-coulda been by my daughter’s side in that restroom. It is what it is.
And that’s my story. It has a happy ending. Sorta. Unfortunately, not everyone’s does because circumstances spiral out of control. Or, parents already burdened decide to haul another person’s garbage on their strained backs. But I also know for me, I chose not to carry the story with me throughout our lovely hike and throughout this day. That’s progress. That’s growth. That’s compassion. I guess in 22 years I’ve learned a thing or two.
Namaste. <<— Even the goofy park patron.
photo: Edwin Warner Park, iPhone 6, ©LeisaHammett.com