The most poignant aspect of parenthood is our imperfection. We are given these beautiful beings at birth—and yet we ourselves are so very imperfect, so vastly unqualified to do them justice. I look at my three children, now in their 20s and 30s, and I still want to do everything for them to make sure they are happy and safe. I hate the fact that my youngest son, Ben, is temporarily unemployed and currently has no healthcare. My middle son, Max, works 12-hour days much of the time but has only bare-bones catastrophic healthcare and is now too old to qualify. And my oldest, because of severe disability, lives in a group home, funded by Social Security and Medicaid. And I can do very little to help their economic situations.
But it isn’t just financial limitations that get to me. I desperately want them to be happy. With my eldest, Nat, there is a bigger underlying component to my feelings of inadequacy because of his autism. From the time he was a toddler who did not seem to know how to play, to a schoolboy who needed a special classroom that did not even exist in our school system, to an adult who requires 24/7 supervision, I, a deeply loving and committed parent, have made mistakes that I regret.
I didn’t know he had autism until he was 3; all I knew were my vague scared feelings as a very young mom that something was off, and that it was probably my fault. My entire family, our doctors, our friends—no one saw what I saw. And so whatever it was that he needed in order to develop, I had no clue.
The Internet was still young in 1989, and there were few books about autism. With Nat, I followed my instincts, digging deep into my own experiences and observations until something made sense to me about him. Certainly I read about autism and asked tons of questions, but there was no definitive resource that made sense to me about how to teach my son about surviving in this world. So there I was, a typical mother with an overflowing heart, and no clear path to channel it.
People told me to “trust my gut,” but at the same time reminded me that I was “just a parent, not a professional.” The wisdom of the time said, “give him consistency and structure,” but I was so afraid of him languishing in the wrong school, of him missing out on something crucial, that I would yank him out of a school program and push our town for more, not realizing that the instability and stress I created made him very anxious. Switching medications and doctors out of panic and frustration often made things worse for him. I was plagued by what I didn’t even know, including what my goal for him should be. Should I be striving to improve his skills so that he could do more on his own, or find him better academics to push him, stretch him down to the very bone, to approximate normal?
It might have been when we got him into swimming with Special Olympics that a light went on for him. Or for me. He suddenly seemed more like a teenager, hanging out with others like him. He blossomed socially, finding a friend for the first time. This blew my mind, and I abandoned all the therapies that weren’t going anywhere, because Special Olympics made him happy. I found a new sense of acceptance—and joy—in seeing him more clearly.
My clarity doesn’t always stay with me, but I’m a bit calmer than I was, knowing it will return. Observing my other two sons’ adult lives helps. They’re not always happy, or learning and growing, or eating well. But I know that I have to let them live their lives, to come to me only if they choose to.
My own aging process colors my perceptions, too. I feel life’s fullness while being more aware than ever of its brevity and fragility. A new clarity keeps me focused on what’s really important: my sons being able to survive and thrive without me. In particular, I am working to build a life for Nat that is sustainable and satisfying—not perfect. I work with what we’ve got: state-run programs with tiny budgets, underpaid staff, and very limited healthcare options. I spend my energy finding kind dentists and doctors that take Medicaid so that I don’t need to buy him exorbitant private insurance. I’ve worked hard to cultivate robust relationships with his group home staff and program administrators so that Nat remains on their radar screen. But I prioritize what I ask of them. I have learned the hard way to boil down the salient ingredients of his life—safety, home, health, and fun—which I did not know how to do in his childhood.
These eternal truths remain: Nothing is perfect, especially parents. Nothing stays the same. And we don’t live forever. And just like his brothers, who now have their own lives’ wisdom and significant others to balance and guide them, Nat’s most important relationships are more and more with the world at large. With others—and not me. And I can live with that.
Copyright 2022, Susan Senator