Stealing time in my daughter's busy schedule to let her be a kid

Stealing time in my daughter's busy schedule to let her be a kid

“Her wonder of the world is infectious. Without it, we’d all be lesser people. As such, I pinch a half hour here, three hours there, a half day where I can.”

This guest blog post was written by Mike Freeman. Mike lives in Rhode Island and is the author of the family memoir 'Neither Mountain Nor River: Fathers, Sons, and an Unsettled Faith.'

Without Shannon, our nine-year old daughter with autism, I’m not sure I could articulate how grateful I am to her and her typical sister Flannery without sounding trite. Like most kids most of the time our daughters are loveable, adorable. They’re innocent. They make us laugh, make us think.  They’ve re-acquainted my wife Karen and me with wonder. A kid like Shan though – no language, no understanding of even basic human custom – razes those clichés.  If rearing any kid is like looking at the stars, Shan rips us up there, zips us through wormholes and blackholes, plunges into dark matter, then blinds us in supernovae.  We’ve been dazed since her birth, and have grown fond of the bewilderment.

Karen and I laugh. A lot. We seethe, too, of course, have come-and-go regrets, even cry, but laughing is the inoculant. To caretakers who know Shan I’ve called her The Spectrum’s Final Frontier or describe to anyone old enough for The Twilight Zone Movie  her “Do-You-Want-to-See-Something-Really-Scary” autism. They try not to laugh but fail, knowing these things are said with deep affection. If Shan is unequivocally out there, then, she’s brought us along, or as close as our limitations will allow, and it’s for this, among other things, that I’m grateful.

I’m grateful for quiet.Though she makes all sorts of noises, Shannon doesn’t talk, and the hours-upon-hours, days-upon-weeks-upon-years I’ve spent in her silent company have taught me how vacuous language can be. In all the love I have for my parents, sisters, and friends, then, and now Karen and the kids, I’m not sure I remember much of what was said, just the comforting tenor between us and all the good will it evokes.  The need to speak, or the perception of that need, can be oppressive, and even among those to whom we’re closest we too often foul the air with words.

With Shan that’s gone, and I’m grateful for the imaginative powers that provides. When I’m with her we gain all the benefits of love and kinship paired with the ability to pay attention to things that comes when people are alone. We both love the woods, and watching her explore, observing what’s around her – dragonflies, hummingbirds, birch bark, gurgling water, everything – without the ability to question, it really does feel like you’re shoulder-to-shoulder with the beginning. Whether you believe in Eden or evolution is immaterial. At some point our pro-genitors raised their heads in wide-eyed wonder, realizing they were part of something, and with Shan you sense what that might have been like.

Subsequently, I’m grateful for what she’s done for our theology, in particular how deeply she’s dyed her sister’s. The same questions have plagued people from the beginning, most of all how a benevolent god can inflict suffering. What autism can do to children can be particularly shaking. For all the peace Shannon brings, she’s every bit the maelstrom of gear-grinding stress that in part signifies the condition.  Flan has seen it all. After a bruising episode in a grocery store, Flannery, three, asked why God gave Shan autism and not her. A couple years and countless episodes later, she said to Karen, “Mama, I’ve been thinking. God must be a heart and not a brain. With your heart you love, but with your brain you think, and if God thinks He wouldn’t have hurt Shannie.” Maybe someone has said that, but I doubt so poetically.

I’m grateful, too, for what Shan has made of me – a thief.  I steal time. Shannon’s days are plugged with school and home ABA, and while I see what it does and appreciate it, I struggle with what it might take.  Her wonder of the world is infectious. Without it, we’d all be lesser people.  As such, I pinch a half hour here, three hours there, a half day where I can.  Driving her to and fro, sometimes I make a call. I fib. There’s traffic.  She’s had diarrhea. Her sister’s not well. I don’t do it much, but often enough, I think, to insulate her core.

Last week was such a time. Early June. I drive Shan 67 miles to Connecticut every week for a therapy, then home.  On the return we pass through large chunks of woods, more than either of us can bear.  In one state forest they’ve built a trail through a rare white cedar swamp, a dark, damp place.  Hermit thrushes sang all around, church pipes really, and Shan nestled down by a springlet to splash, to scan, to absorb.  Plucking moss from the water, she rolled its threads over and again among her ten fingers. A black-and-white warbler, streaked, landed on a cedar trunk two yards off, tacking round in its way.  Shan looked, cooing faintly while the bird foraged.  On an adjacent tree a northern water thrush – with its black-streaked face – hopped from the ground and scolded us from a limb, guarding a hidden nest. Quiet, Shan studied.  I couldn’t tell her what she was looking at and was happy for it. They would have just been words.

Not long ago Karen and I said to Flannery there would probably never be a cure for autism. She didn’t blink.

“Why do they need a cure? Shannie’s the one who teaches us. We need the help.”

I’m grateful for many things, then, on Father’s Day and every day, but mostly for what our two kids provide in combination.

Source: Autism Speaks, Stealing time in my daughter's busy schedule to let her be a kid


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