Susan Senator
All happy families are not alike...
All happy families are not alike...
Am I doing enough?
How many autism caregivers ask themselves this agonizing question? I know I do, and my autistic son is 32. Even though these days Nat is only home Friday afternoon through Saturday afternoon, a small amount of time, my anxiety remains. Because his stay is short, l should be able to maintain the energy to pack a lot of activities in—shouldn’t I?
I feel so driven to make his days meaningful because I don’t feel that he can do this himself. One of the most debilitating aspects of Nat’s autism is that he doesn’t know how to assert himself. We have never been able to teach him agency, to be the author of his fate.
He expects others to have both the questions and the answers. I do not know how to unteach this. And that is why filling his time productively or pushing him to become a self-directed adult becomes my form of perseveration, my duty.
At times my life with Nat feels like a checklist, where if I have enough positive things he’s done or I’ve helped him do in a day, I’ve done okay. Each time that I am with him, the checklist persists. The list begins on Fridays, when I pick him up at 3 pm from his day program. The first thing I do is ask him where he wants to go. He’s motivated enough to answer me quickly—he always requests the local farmstand. But if I didn’t ask him, he would not ask for it. I don’t want him to miss out on anything that makes him happy, so I always ask. And so, he has not learned to do this for himself.
Nat loves going to the farmstand because they have great baked treats and ice cream. I love going there because everyone is so kind to him. Nat bursts through the doors and flies past the baskets of fruit and vegetables, making a beeline to the dessert counter. Although I enjoy the way people smile at him, what is foremost in my head is his interactions with them.
My goal is to let him order his snack on his own, maybe even pay for it himself and wait for the change. To say thank you. To look at the person, he’s dealing with. I don’t want him to be rude and ignore them. I want him to be at his best so that his interactions with the world are seamless and positive.
But lately, I wonder if this is an unnecessary burden I put on him. He is not, by any stretch, a child. How much more am I going to wistfully expect that he basically be like everyone else at the market? What would it be like if I no longer prompted, held back, refused to explain to the cashier what was going on, and stopped smiling kindly to every single person so that they would like us? Would Nat end up never learning how to get things in a store?
So I am giving deep consideration lately to this mission of mine, this checklist of “shoulds.” Is it still necessary to push and prompt and prepare Nat for social interactions? I don’t have an answer, but I do have some self-doubt these days and a nagging suspicion that my attitude towards Nat constitutes an attempt at combating Nat’s autism. And I believe in making peace, not war, so I need to look at that. I wonder: do I still wish he could be less disabled so that his life would be easier, as I did when he was first diagnosed and I was not ready for autism acceptance? If I am guilty of asking Nat to mask his autism, I want to stop.
The truth is that autism acceptance happens with others and Nat only if I accept it first.
I’m not always in this high-functioning teacher mode when it comes to Nat. There are times when I do have an unconsciously sweet, fun time with Nat out in public, as just his mom, when all I’m conscious of is that I love him and I’m proud of him. I’m excited for people to see him because he’s a beautiful human being during these times. During those times of strength and letting go, I don’t believe people are judging him.
Rather, I believe they are enjoying him and that somewhere inside, they understand a true free spirit when they see him. I have a friend who says that Nat is “pure Id,” he just does what he thinks he should do or what he wants (they’re not the same), and he does overtly what we all want to do secretly.
Why can’t I always just see him that way, as purely himself, and not someone who needs to work at his social behavior all the time, one who needs improvement? It’s a tough perspective to change. But various professionals have said throughout his life things like: “If you don’t keep working with him on his skills, he will lose them.” Or “downtime is regression time.” Or this gem: “It’s probably too late to develop more skills once he’s an adult.” That terrible, tiny window of birth to age five development. Well, now we know that window stays open for all our lives.
I am searching for the sweet spot where I reasonably support and teach Nat while not squelching his spirit. Where I enjoy him more than worry about his growth. Maybe my mantra should be, “What does Nat want?” After all, he is an adult, and adults get to figure out what they want to do and be. Nat has had years and years of intensive education on how to be in the world. Shouldn’t there be a moment when at long last, he can rest?
I suppose if I could shake all of that terrible guilt-inducing advice, I might be in a completely different place with Nat. I could be in the space of effort-free joy. I could simply be absorbed in his light and orbit, and just float, watching, enjoying my son making his special impact on the world.
Copyright 2022, Susan Senator