Rainbows of Autism

There was a rainbow across our seemingly interminable 20-day school vacation. It came when I least expected it – arcing across the horizon as a reminder that where we start is not where we end – and in the process, there is rare beauty.

Today marks Week 3 back at school. We survived, dear readers, but you knew that, because each of you have survived trying moments of your own. Right now it’s raining here at home, our first rain in nearly a month. Rains soothe, bring us inward, and give us pause if only when we must slow down, maybe wear a different outer shell, and make sure the structure of our abode is intact.

Our real rainbow occurred the evening after my last Commando post, in the parking lot of a beach-side supermarket of all places where we restocked snacks and beverages. We unloaded our cart while pointing to the skies with a few oohs and aahs, and some hurried “Look! Look!”s to the boys who didn’t get it.

It was a good sign nonetheless, and I’ll take any sign I can get. It headed us back to the ocean where captured some stunning photos of W. and J. coated in golden sunlight, both beaming, atop the sand dunes. Not wanting to leave the evening light or a family moment spent not fighting about underwear, I twisted my husband’s arm to go for a drive, just exploring.

After twist and turns we discovered a neck of land arcing westward, where near the tip there was a beach where apparently all the locals go to watch the sun set across the waters. We were about 10 minutes late for the sun’s dipping beneath the horizon, but pinkness still washed the sky, until it ebbed away with calm. I filed the place to memory and savored the partial glory.

The rainbow’s end that evening was a moment of peace and perspective, and it has stretched all the way to today. Vacation taught me about W.’s need for self-determination. For autistic young men locked in bodies without the ability to communicate, behavior is their way of speaking. This young man has a voice, and a spirit, and a soul – and he’s going to use it, dammit. Willfullness is a gift. So many of our autistic kids languish in seeming tolerance of anything we give them, only to either half-exist in sadness, or later lash out in aggressive or abberant behavior we can’t connect. My W. wants to set his own course, and he’s telling me now. This is good.

The process of shaping behavior sometimes isn’t pretty. W’s first day back to school on July 9 was horrific – a spike in disrobes unlike even during vacation. Days 2 and 3 weren’t a picnic either. Day 4 featured a 3 hour and 45 minute protest disrobe. The behaviorist drove me nuts with endless repetitions of Go Read My Protocol and Keep On Doing This. Yet gradually the disrobes have decreased, and with it has come an understanding that Mom and Dad require underwear most times, and that if he wants his usual routine, he has to use the choices available to him – styles, sizes and fabric of underwear – to get what he wants. We aren’t there yet, but we have dialogues now. Isn’t that what we want with all our children?

Vacation also taught me that J. has passions all his own – and when immersed, he’s his own young man, no longer bound by his twinnness and his role supervising his brother. J. so loved the beach – hours of walking the sands, swimming out way beyond my tolerance level, and smiling like we rarely see. The less self-stimulatory (“stimmy”) noises and hand clenching that are typical with him subsided. My motherly heart felt fulfilled just watching him. My challenge now is help foster that same joy in other activities. We all need to find our joy.

Finally vacation taught me about myself. Moi, aging old moi, is capable of fresh vision, and maybe even finding my own joy. I concluded school vacation by having to make a choice between attending a wake for a friend’s parent, and hiking. I agonized, tried to do it all, and when circumstance finally forced me to make a choice, it was what fed my soul – hiking. It’s a move that probably wouldn’t have happened a few years ago, and before a week of watching my kids find what moves them, and thinking about what it means to me. In lieu of being at the wake, W. and J. constructed a little memorial of sorts in the woods to my friend’s dad. Our prayers softly-spoken that day became part of the bedrock that is the mountain, and what grounds all of us – even the autistic – to the earth.

How fitting that our final day of vacation was mountain glory that had only sunshine. And our road led us back to what is truly home.

1 thought on “Rainbows of Autism

  1. Madeline

    I stumbled on your site while googling “disrobing” and “social story” for a paper I’m writing.. That was about fifteen minutes ago so thank you for providing me with some worthwhile reading while I procrastinate. I love your site and congrats to you for taking the time to record and share your experiences. I hope to read more soon. Best wishes to you and your family!

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