If there’s a template for parents raising a child with autism my wife Karen and I likely followed it. Before having kids, neither of us knew much about them. Our first born Shannon smiled on time, walked on time, and said the only handful of words she’d ever say on time. To us, all seemed exhausting but well.
Like so many people, too, we spaced our two kids two years apart. When Karen was eight months pregnant with our second daughter Flannery, then, Shannon’s development had taken a turn toward God knows where, and we spent the next five years as most newly diagnosed families do, in the autism cocoon – reading, sleeping, breathing, battling, and trying to love a condition we soon realized no one on earth truly understands.
Though we eventually emerged to cobble together some sense of normalcy, we’ll always wear the same tinted glasses every autism family does. They color everything. Karen and I see education, faith, each other, social ties, and all of life through the spectrum, Disney movies too, or more accurately how Flannery sees them.
Early on, we read that one of the best things for a child with autism is siblings. In our case this has been infinitely so. Though Shannon, now eight, doesn’t talk or to our knowledge understand language, Flannery speaks enough for both of them, plus ten kids more. She models for Shan, engages her, and is no longer put off when her sister doesn’t reciprocate.
This wasn’t always true, and when Karen took a then three-year old Flannery to her first movie, Frozen, Karen read in her daughter’s body language that Elsa’s and Ana’s story – a girl endowed with precarious magic cutting herself off from her bouncing, joyous little sister – had an acutely personal punch. This carried over, where Flannery has often been a better interpreter of Shannon’s condition than any specialist we’ve known.
Shan enjoys a few short clips from scattered Disney movies, including the Stravinsky segment of Fantasia, where crocodiles chase hippos around. Shannon is only eased by three things for any length of time: water, motion, and countless repetitions of these Disney clips. Not long after her Frozen experience, Flan watched her sister watch the snapping, clacking reptiles, then said, “I think Shannon has a crocodile in her brain. When she’s near water the crocodile is happy, but sometimes the crocodile bites her brain.” It’s become a family staple.
Three years on, with Flan’s understanding of the world and the stories people make of it all the greater, I recently took her to Moana. We loved it for all the reasons everyone did, the great story most of all, but the songs and sturdy themes as well. Flannery, though, was born with her autism-colored glasses and sees much if not all the world through those complicated lenses. Like many children, she ponders slow and deep, and a couple days after Moana she was painting at her easel, then stopped.
“I think Shannon has a green heart,” she said. “A little stone like Te Fiti. Mostly she’s green and flowery and happy, especially in water, but when Maui steals her heart she turns into a lava monster. I wish Maui wouldn’t steal her heart.”
Shannon had taken us through some bruising months. These things come and go, but this stretch had been particularly grueling, both for its length and troubling signs of self-injurious behavior. Most of the time she was fine. We’re quite lucky in that Shan’s core is indeed green and flowery and happy, but when that glowing rock is stolen, the lava balls fly. Two teeth, incisors, were having trouble coming in and were our chief suspect, but as always with autism we simply didn’t know.
Karen works late, and I often have both girls for protracted periods. We go outside mostly, but this was winter. Shannon loves the public, with pools and big box stores being favorites. Usually such outings are pleasantly chaotic. This winter, though, was different. More often than not an hour, sometimes more, would go by without incident before the floor dropped out. She rolled, kicked, screamed, and hit her chin so hard that her eyes often lolled like an imperiled boxer’s. Flannery had been taxed immensely. The calm she needed, the one-on-one attention she craved, were largely unavailable.
Like every neurotypical kid growing up alongside autism, she was attempting to process what no one really can. Story, though, has buoyed people since we drew on cave walls, and we most often apply what we see, hear, and feel in stories to our own lives. To us, then, Flannery has been something of a god, or at least a myth-maker.
Like the vast majority of autism parents, Karen and I are ordinary people contending with a wildly extraordinary child. Though we do research, and listen attentively while professionals detail synapses and connectivity and sensory integration and all the rest, we don’t understand much beyond concept. Flan, though, clarifies. If a crocodile and darkly magical sister un-muddied the waters, a stolen green heart and the ensuing volcanic rage have given us a metaphor to float upon. Whenever Shannon’s normally peaceful waters, then, boil and roar, we know – though it’s not always easily abided – that eventually Maui will repent, and slip that soft, green-glowing gem back where it belongs.