Why Making Choices for My Son Grew Harder After His Diagnosis


There’s a storm coming into our valley, and it’s windy. We desperately need snow or rain, and I hope the wind is not all sound and fury, signifying no precipitation. Fences and patio furniture have blown over, and on our driveway the feathery evidence of a pigeon having recently met its end by owl? hawk? cat? has disappeared.

When the weather is less than perfect, I walk the dog on the cart paths of a neighborhood golf course. I look for the flags that let me know whether golf is in play or not, and when I don’t see them, we enjoy the winding path and beautifully kept landscape.

Today the flags were up, which was surprising. Why would a golfer choose to play golf in 30 mph winds, with gusts up to 70 mph? For the challenge, maybe?

People who regularly read my blog will remember that I used to work outside the home in a position that required travel. Wind is not uncommon in our valley, and I frequently flew home in windy conditions. I landed at my home airport hundreds of times, and there was usually wind turbulence. It wasn’t anything to worry about; it was just what was normal. Having experienced the pattern over and over, I was familiar with the usual angles, rate of descent, speed, bumps, etc., of a landing.

One night the winds were bad, and the flight was not following the pattern. We were too high for how close we were to the airport, the angle was wrong, the speed was too fast. I was looking out the window muttering to myself “this is not right, this is not right” when the pilot aborted the landing, pulling us up high and hard. We flew back an hour to the airport we’d just left.

Other planes had landed before our attempt, and other planes landed after our attempt. The pilot of our plane was empowered to make the choice whether to land or not, and he’d chosen to abort the landing and return to the airline’s hub airport.

The next flight home was delayed for hours until the wind decreased, and when we finally boarded again, I’d been upgraded to first class. Someone who’d had that seat had chosen not to take the next flight.

Our lives are a mosaic of our choices. To golf or not to golf. To land or not to land. To fly or not to fly. When we make choices we must analyze the relative consequences and benefits of each choice as best we can, though we don’t know the outcome.

We follow the estimation of good and bad results like climbing out on tree limbs. If I do golf, I’ll maybe have an epic game or a maybe a ball will blow through someone’s window. If I do land, we may have a good but rocky landing or maybe everyone’s day will end badly. “Two roads diverged in a yellow wood…

We learn from when choices go well and more often when choices go badly. That 20/20 hindsight is a powerful source of experience. Regret is also a compelling teacher — both the regret for a choice made that you wish you hadn’t made and the mourning of the road not taken, even when the choice made was good.

Over the years I’ve learned to not only analyze the relative consequences and benefits of each choice and draw on my experiences from previous choices, but to also include in decision-making the price of regret and awareness of the mourning.

Since choosing to become a parent, I’ve made choices both as the parent of a neuro-typical child before his diagnosis and as the parent of a child on the autism spectrum after his diagnosis.

The choices made as a parent of a child on the autism spectrum have been harder.

“Why harder?” one might ask. It was the same child, before and after — why would the choices be different?

Our child’s diagnosis required that we see again everything about our child through a new lens. A lens which was unique to him only. We had to redefine our own experiences and could only marginally utilize the experiences of others.

Harder because there was so much less information to draw on to analyze the relative consequences and benefits of each choice.

Harder because the 20/20 hindsight frequently didn’t add to an accumulated experience on which we might draw to make the next choice — there were too many outlier events. The picture was so much bigger than we realized, and it’s taken years to piece it together into a pattern that we can use to support our child.

Harder because the emotional cost of the regret and mourning felt higher.

It’s truly been the road less traveled.

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