Approaching Autism: Ac-cent-tchu-ate the Positive
Exactly one month ago, I tapped out a blog post. It was meant as a March offering, a welcome mat for the month to follow: World Autism Month, aka April. But that never happened. Projects and advocacy intervened, flowers bloomed and spring recreation beckoned. And the writing rested on my iPad, untouched.
Now we are three-quarters through April, but anyone who lives with autism knows that neurodiversity knows no bounds. This post is about parent mindset and choice: as a caregiver, how do I wish to approach the autism journey? I asked myself that question seventeen years ago when my son was first diagnosed. And what I wrote one month ago is my reply. ~ Teresa
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Song brain kicks in early this morning. I start to hum. Is it a Disney tune? Feels like it might be. But no, a Google search reveals that it pre-dates Disney. 1944… perhaps an effort to seek sunlight in the midst of a dark time in world history. The tune is this: Ac-cent-tchu-ate the Positive.
My humming often reveals what I’m thinking. And this morning is no different. This morning I began thinking of how I’d like to approach April. And then music took over.
April is World Autism Month. It used to be called Autism Awareness Month. I always felt it ought to be called Autism Appreciation Month. No matter, now the descriptor has been dropped altogether, and you get to choose your own lens. Understand autism. Be aware of it. Appreciate autism.
Thus my humming. And the recollection of a line I liked from a Netflix documentary celebrating Betty White. When asked about her sparkly approach to life, Betty smiled, “My mother. She taught me that. She said to me, ‘If you spend your time chasing negatives, the positives will pass you by and you’ll miss them entirely.'”
This struck me because I don’t like missing out either. And it made sense.
To autism and to the month ahead, I choose to celebrate autism. And as a parent whose odyssey spans years—a lifetime—I choose to set the dial on “accentuate the positive.”
Why would I choose positivity in the midst of a journey that is often challenging, always emotional, and at times, downright turbulent?
Here’s why.
The What?
Like any journey, autism is a choose your own adventure expedition. How do I want this to go? According to a prescribed script, or according to mine, ours as a family, and most of all, my son’s? I think I know.
Let’s make this the best it can be, for all of us, because autism is a shared family experience.
Looking back, I see that my reaction was a coping mechanism. Cope by seizing the good. Stay afloat when all around you appears not to be what you thought it might be. Or more challenging than you expected. Or overwhelming. Choose swim over sink. It was not a decision; rather, pure reaction.
In the midst of Great Big Emotion, grab hold of the positives. Don’t let them get away.
Now that I have a birds-eye view, I see it for what it was: carving a path and a way forward, a beacon of light in stormy seas. It takes the same energy to despair or to repair and set a new course. I get to choose where I set this dial: celebrate or settle. I choose positivity.
Was it a head in the sand approach? Sometimes that flickered across my consciousness. That I was in denial and was creating a magical playscape because I couldn’t deal with the alternative: a needle set to may nevers and deficit—to negativity.
I thought of that. Of course I did. And maybe that was part of the coping strategy. Deal with the overwhelm in tiny increments by restricting the flow of difficulty. Let it in slowly.
Or maybe by opting for positivity and play, I was controlling what I could control: my choices. The rest was beyond me and was mine to discover and manage—with time.
They say that adversity introduces us to ourselves. I was met by challenge. I chose light over dark, and in retrospect, I recognize why. It’s a learned pattern. My maternal grandmother sang her way through her days. And in the face of something difficult or daunting, my mother used to say to me, “Don’t worry, we’ll make this funsy-wunsy.”
So while I was swimming in a sea of “will never do” and “will need assistance” and “may never” and “deficit” and “challenge,” I reached for glimmers and curiosity and fascination. We would acknowledge the challenge areas but we would live according to what was going right and according to delight—Erik’s fascinations and curiosities. Delight would be our light.
The So What?
Choosing positivity feels good. It feeds the soul. And I understood the impact:
– a boost to Erik’s self esteem – What I project, others see and emulate. It’s a positive loop. Other parents’ reactions are guided by my own reaction. I model the way forward. Sometimes you have to act the way you wish to feel (Happiness Project) and then the feelings naturally catch up. – Family is more apt to pitch in and be on board if we make this about enjoyment and celebration.
So, this we did and continue to do by tapping into Erik’s fascinations:
– exploring light and shadow with a shadow catcher and by creating “object and shadow cards” – celebrating astronomy and the ocean with 3D a projector: projecting the night sky and the undersea world onto Erik’s bedroom ceiling – creating a “planetarium in my room” and staging themed sleepovers – encouraging costumes like Jungle Boy and creating a jungle theme bedroom – using puppets—like harbour seals—to narrate our family adventures – creating collections like “what’s not allowed?” signs; Magic Tree House audio books – sourcing OT equipment like a squeeze machine and a hanging swing system… featuring a Superhero swing where you get to swing over an imagined city at night, arms and legs outstretched… – setting up escape “comfort spaces” like a bat cave in the basement via a Lion-Witch-and-Wardrobe-type set up… and an undersea garden- Funky Forest—a whimsical backyard forest where whimsy and nature blend, modelled after a magical forest on Vancouver Island… – peddle-boating adventures on our small backyard lake in Halifax
Bottom line? What’s good for Erik is good for all. And whatever’s good for the soul, do that.
When Erik was young, the positives we chose were Erik’s loves: rules, water, maps, nature, space. Each fed his curiosity. Juiced him up. And in the process of exploring Erik’s delights, we tapped into the social and communication challenges, the hard stuff: inviting people into your headspace, sharing your thoughts and opinions, initiating conversations, listening and responding to others, integrating with a group… It’s a long list. But the neat thing? The tapping happens naturally when you draw from passion. Therapy becomes a byproduct of celebration.
Embedded in this celebratory coping strategy is solid learning theory: we learn by doing, by being engaged in meaningful activities where we feel motivated—excited—to jump in and participate.
We need to be drawn in in order to be drawn out.
The Now What?
Erik is now a young man, 23. When I ask him about his childhood and what was helpful and made him feel good, he is quick to reply:
1. Glimmers – framed messages of positivity… sunshine in stormy weather 2. Keepers – annotated growth calendars… illuminating our own progress forward 3. Latest Greatest – framed accomplishments in the kitchen 4. Big Picture – photos in the mud room featuring who are we as a family 5. Grinch in the Chimney – Struggle is often where the hard-earned learning happens…and where the light comes back in. Our most satisfying learning is often when we got knotted up and have to work our way out—aka down the chimney…thus, Grinch-in-the-Chimney moments. 6. Shining Lights / Sources of Strength – Family sayings guide us, like “It’s not what happens to you, it’s what you do about it that matters most in life” and visuals keep us on track.
Back to Betty. Her mother’s words resonate with me: I don’t want to miss out, either. In managing what comes our way, let’s not let the good stuff slip away. In this, coping quietly shifts to thriving. “Surviving to thriving,” my husband says. And that’s living the journey on your own terms. “Ac-cent-tchu-ate The Positive” It’s a choice.