Monthly Archives: September 2018

Autism’s Original Instructions

Vacations always bring revelation, on what helps us outside our comfort zone – on what works and what doesn’t – on new opportunities that open my guys to their world. Even now at age 24 I’m not sure we get it right, and I’m constantly rewriting the instructions on balancing structure of the known versus new experiences.

Take Labor Day weekend. Even before vacation Will’s self-stim motoric activities were overtaking daily routines. The favorite has been shuffling preschool word cards, which I view as OK and probably self-organizing to a degree. But when it becomes an obsession, wand he won’t the car or the room until his deck is all organized, and won’t try what I consider more purposeful play with iPad, puzzles or beads – alarm bells go off for me, along with the usual mother guilt over what if anything I could have, should have or maybe could be doing.

In an attempt to get him into something else on day #2, spent lazily in post-hike recovery, we lounged in the motel’s lovely pool, and I deliberately didn’t bring word cards or other amusements. It was one of those gorgeous days you long for during your vacation, and I was basking in the sunshine on a chaise lounge overlooking the two peaks we’d summitted the day before, filled with pride at my hiking men and how well they do on the trails. Jeff grinned ear to ear in the pool while Will showed so little interest in even the hot tub that I worried about him bolting -another of our favorite vacation misbehaviors. I managed to have him join me as I basked in sunshine while admiring the big peaks we’d conquered the day before, but even sustaining him in the chair was a struggle. After a with a newly downloaded new puzzle game lost its appeal, Will rediscovered something simple that I forgot- my phone’s photo albums of him and our adventures.

For at least 20 minutes there I had what I needed all week – time to read, to restore and think about my own broad canvas. I lingered on an article in an outdoors magazine by a native American teacher who bested his teenage alcoholism by focusing on his tribe’s Original Instructions – teachings on humans’ role in the world and their intimate connection to all living creatures. They include love, courage, kindness, respect, humility, truth and wisdom – balanced against the wide canvas of nature where humans are only a part.

How applicable, it seemed. Later after dinner, ice cream and relaxing in the room while Will’s ennui seemed to creep in, I got him to play five games of Uno with me. We made it harder by using a real deck of cards, not an official Uno kid’s set – my best $1 splurge at the Family Dollar. It was my #2 favorite moment of the trip, next to the summit of course. He would have kept going except it was 10:45 am and we had to start the bedtime routine ahead of early rising.

What finally did it for Will and those moments outside of his stim zone? social time with Mommy? photos of him? rediscovering an old pastime? meaning beyond motoric self-calming?

Autism’s Original Instructions don’t come with a guidebook to Will or Jeff. They’re a compilation of ancestral teachings and our own best fit on what our kids need. My list is a compilation from my tribe – the parents, teachers and therapists who went ahead of me and shared their wisdom – with tweaks of my own born in disasters from which we all have learned. Funny they’re not far off from the Native American version.

Autism’s Original Instructions

    1) Love, above all else.

It’s amazingly visible when Will or Jeff know I love them. It fuels me, and I try to capture those moments in photos increasingly, so my addled brain won’t forget how happy they make me.
2) Respect, no matter how disgusting the behavior. Like poop accidents on the trail, which thankfully we avoided the following day.
3) Communicating, even when there’s difficulty on understanding what the individual states back.
4) Self-determination. All humans need to feel in charge of their destiny, even to a small degree. The more the control, the more at ease in their world.
5) Structure, yet balance. When the boys were younger I brought my trusty Velcro schedule strips so I could use picto cards to show today’s schedule. I no longer need that but sometimes a photo even if a Google Images one speaks volumes to what’s on the menu literally and figuratively.
6) Community. We all need to learn to live in a world of others, and more importantly know that when we don’t have enough resources on the inside, plentiful help is out there, even if it seems it’s not.

Maybe these aren’t so bad a set of instructions for the rest of us, too. What’s your Original Instruction list?