Natalya kicked the windshield, ouch smack bam. Three times and it was bad, making three horrible holes with those radiating lines, webs where no spider spun a thing. It had happened before.
I told caregivers not to put her in the front seat, but what to do when one showed up with a pickup truck because her car wouldn’t run? I noted the immediate danger but kept silent. Surely this once it will be okay. But it wasn’t.
Natalya and her caregiver had just arrived that afternoon at the Mall of the Great Plains to check out Zonkers, one of those “family” playgrounds with rides and arcade. Nat had been there before. She’d had a great morning too.
But as often happens, extreme gut pain hits at the most inopportune second. She can’t tell us what’s wrong, and the caregiver was new to such outings, couldn’t read her doubled over self—who knows, we all try to figure it out. Was it “just autism,” a reticence that can’t be deciphered, saying no when you mean yes, meltdown for meltdown’s sake, or simply a cry for help?
Later, Nat answered in the affirmative that it was her tummy going wild. By the time she calmed down all she could talk about was going to Zonkers. The torn up gut ruins the day again. The well-meaning caregiver had kept up a friendly cajole and that’s when our daughter lost it and the truck owner lost a windshield. The medical science confirms the disastrous gastrointestinal problems in persons with autism/ADHD and how they affect the way these persons think and act—check it out here and here.
This windshield-behavior had cost us a pretty penny before, and now, right after the holidays, we were too broke to fork out the hundreds it would cost for a replacement. But you do what you have to do. In truth that was small potatoes compared to what the whole thing really made me obsess about.
What is her life going to be like as an adult? I wondered in despair. Natalya will turn 17 in a few days, and for her small stature she’s physically quite strong. She’ll only use that strength in one of two instances: when “testing” a frightened adult (she can smell fear better than most), or when the fires in her gut rage out of control and she is helpless. The latter we were bearing down on with new strategies to heal the gut, another stool test and scope. But I admit that in such moments as this I was short on hope: how would she ever have a friend, beyond caregivers, therapists, and mom?
That night we sat together at the dining room nook, where a bench goes around the table at a right angle. Others in the family were elsewhere in the house. I simply broke down. Many familiar with autism will know that often the afflicted person laughs uncontrollably when someone cries, and that’s what I expected and dreaded, unable to stop the flow of tears and heaving sobs. But what I got shifted my whole world.
Nat scooted over and put her arm around me, drawing me to her. She made murmuring sounds and it all matched up: intonation, gesture, and the clear-cut vibe. She pulled back and looked at me, and yes, it was sympathy she was giving, as she reached over repeatedly to hug me close again and again.
Wow! This from a kid who’s never told me “I love you” unprompted. Something was going to be more than all right for her as an adult, if I could always remember there is a loving person inside her who is so very capable of showing it.
News flash as I was writing this: the home health care company will pay for the windshield! Maybe it’s easy to say now, but I would have gone deeply into debt for those hugs. The lesson is that I need to ask myself, in every difficult instance: hey, are you looking closely at Natalya, the individual, or are you “managing autistic behavior?”
Daughter comforting mom like that altogether shifted my world because now I can see her grown up, and savor it. It was a welcome milestone which I wish to celebrate by a vow to greater mindfulness as a parent.
The next evening after dark I had occasion to drive from Eudora to Lawrence. For my dear subscribers out of state, that’s a six-mile stretch between one town that is almost but not quite a suburb of Kansas City, and the one progressive university town in the state of Kansas.
Initially I’d left our residence in yet another county, driving rural roads like I’d never experienced them. The dirt and debris blown by the fiercest of winds went beyond the spinning of cute and twirl-y “dust devils.” Huge curtains of dust were flung across the car at irregular intervals, taking out all visibility. It was scary and it was plain weird.
After taking care of things in Eudora I headed onto K-10, a busy four-lane that shuttled commuters to Kansas City and back to Lawrence. Ahead of me I saw a gigantic ragged cloud of smoke on the sky, moving fast due to the winds. Traffic was slowing down: we were re-routed off this major thoroughfare. That never happens. There were numerous fire engines, cops, and emergency vehicles, and many were on the move.
The crawl up the off-ramp was nerve wracking, wondering what would be laid out on the other side. As I crested, I saw the brush fires on either side of the highway, long lines of flame. Suddenly I felt an intense kinship with my fellow drivers—I could see the slow procession of red taillights heading away from the scene, and knew it was essential to follow them. A young man had taken it upon himself to park his pickup blocking re-entry to K-10 and was making like a traffic cop with his arms so we’d know for sure where to detour.
It felt like Armageddon.
Then it began to snow.
After a few minutes everyone got back on K-10 and traffic was coming from the direction of the scene. As if nothing never happened. But fire and snow? On top of the new Dust Bowl? Then back to normal? Stop dragging my heart around!
This is a mental health blog, and I do have a point to make. My work is to speak truth about the times we live in, even when they are harrowing–what makes me lose my grip is pretending. So we face it: that the autism epidemic grows, that climate changes are increasingly putting us through confounding episodes that eat at the edge of awareness even as we dismiss or deny them. How do we come fully present and wholly reflective to these issues, including so many others such as poverty, and health care that fails us?
There are many strategies. Don’t turn away, don’t go numb. Do wonder over what your great-great children will inherit. Work for peace and justice and a recovering Earth. How do we stay steady and not lose our minds? Try on these words from the poet Rilke, who saw it like this:
God speaks to each of us as he makes us,
then walks with us silently out of the night.
These are the words we dimly hear:
You, sent out beyond your recall,
go to the limits of your longing.
Embody me. Flare up like flame
and make big shadows I can move in.
Let everything happen to you: beauty and terror.
Just keep going. No feeling is final.
Don’t let yourself lose me.
Nearby is the country they call life.
You will know it by its seriousness.
Give me your hand.
–Rainer Maria Rilke, quoted in Bill Plotkin’s Nature and the Human Soul
What a weekend! There was the stuff of mystery in the surprise of my daughter’s hugs. Nor will I ever forget the sight of those smoking acres of land so close to home, or the worry and tenderness I felt for everyone in their cars as we tried so carefully to flee.
These days it seems the most meaningful things are less what I push to make happen, and more what comes from an unknowable source where things unfold and ask for a witness. So why not give it a try to, as the poet says: “Let everything happen to you.” Love and fear. In the embrace, we find the strength to face anything.