We have so much autism related drama happening, I wouldn’t know where to begin. I want to snort-laugh at my naive assumption that all my carefully laid plans for the fall would play out smoothly.
The lesson in all this is very simple: make few to no plans that do not involve centering autism. That’s it. That’s the life.
It’s not handsome, hyperactive A’s fault. He is just being his predictable self. But in the immoveable prix fixe feast that is autism, it is the dinner guests who must adapt to the set menu. A is the temperamental chef who kicks the customer out in a shower of green onions rather than accommodate any substitutions.
What lies ahead for us, the sous chefs, we know not. Perhaps we shall be minutely dicing metaphorical garnish for the rest of our days.
I cannot describe it any other way: there is a sort of tiptoeing feeling to this intense caregiving life. Always waiting for the other shoe to drop. Scared to say definitively, I am doing This. Because This turns to Not Happening with the merest roll of the cosmic dice. Standing on the periphery of everything. Turning into wisps of might have beens.
It is an Indian truism that we prioritize our kids in all things. But that’s not really true, and I mean that in a good way. Lots of Indians tend to work hard, play harder, and make time for close adult friendships. So when, like us, you actually have to make your high needs child the absolute center of your whole life forever, it is a different league of prioritizing. Friendships fade because we can’t pay the quality time toll; careers bend and sometimes break; old age planning becomes about caring for an adult child as long as you can carry on. We won’t be golfing or wine tasting or cruising with our peers.
What keeps us going? A sense of deep commitment. A huge well of fascination with the manifestations of autism in someone we love beyond measure. A dread that others would not care as much as we do. Sometimes it is just the momentum of fatigue, no lie. An old friend said to me once—the gifts of God are heavy. Indeed they are. For people who see the world through a lens of faith, the sacred component to this kind of parenting sets the bar (rightfully) high. But you don’t have to be a religious person to feel the calling to rise above your own wants, to surrender to a life you didn’t plan on, and to be, at least for a few decades, someone’s everything.