Learning and Growing as an Autism Parent
Covid isolation caused us to restructure our lives yet again.
Posted May 20, 2021 | Reviewed by Chloe Williams
It recently occurred to me that this year of lockdown, with just my husband Ned and my son Nat, has been like the days we waited for Nat to be born and the year that followed. Nat is my firstborn, so it was just the three of us back then, too. We were learning how to be a little family and how to take care of this tiny brand new person, who, it would turn out, had autism.
Even though I knew nothing about autism, I could feel a vulnerability in Nat that scared me. The weird thing is that back then, I could not identify that this feeling was dread; I mean, what kind of mother felt dread with their newborn? (Answer: Pretty much all, but I did not know that then.) Instead, I persuaded myself that this is what joy felt like. Joy. Perhaps, I told myself, joy was not a light, sweetly ticklish feeling, but actual joy felt intense and thick. Your heart stretched so wide that it hurt. Thus, I had taken the way Nat made me feel and given it an inaccurate name, possibly to keep from thinking about the enormity of my new responsibility.
The reality is that I was overtaken by the finality of having a person dependent on me, the fact that I would from then on always be responsible for his life.
Does everyone feel this way about their firstborn babies? No matter what the answer is, I felt alone and so cold, shivering, sick with the huge importance of what had happened, this new person, and of what I had to do. This, I now realize, was dread. I did not know what would happen to us, what kind of a person he would become, or if I would fail utterly. I never imagined the future, the golden pride of high school graduation, the handsome football player, the mischievous but perfect child. I was living in the present of his infancy, just trying to keep him alive. He was, objectively, a healthy baby so there was nothing real to this dread. Sometimes I have reasoned that what I was feeling somehow was his nascent autism, the tendrils of his ill-fated nerve cells at their very beginning, curling and connecting in their pre-determined, inexorable tangle.
Three years later, I finally learned the name for what was going on: autism. And it was like he was born again, now as a boy with a profound lifelong disability. Nat’s autism burned our lives to the ground, and fear and dread were all I knew. Once again I had to figure out, with only Ned to help, how to take care of this very vulnerable person. How to do it right so that he would not suffer from this thing that lived inside of him.
I actually love the person that grew from those ashes — a self who became strong, confident, and smart. A Nat expert. A mother who understood, eventually, that Nat’s autism was a structure built over our lives, over him, but that was not him. The challenges, the horrible struggles he endured became my struggles, as I tried to imagine what was going on inside of him. I believed – and I still do – that the more I can put myself in his place, the more I will understand him, and the more I can guide him to happiness and safety.
At the age of 30, Nat came back to live with us because of the Covid-19 pandemic. Ned and I believed that we were the only ones who could really keep him safe, because of all the unknowns of the disease and all the exposure he had to others in his adult life, his group home, his day program. Once again, we were a threesome and we had to learn how to live this way to survive.
This time, however, I had no dread. I switched quickly into Nat mode, into living for the two of us so that we could not only live through the pandemic but live well. We stayed in the quiet, solitary womb of our house, trying to make sense and meaning of these new circumstances. Ned started taking Nat on regular six-mile walks. I baked with Nat just about every single day. We quickly pieced together a life for him, consisting of online classes and hangouts, and somehow got him used to living in this one space, inside our home and ourselves, or completely outside just covering the grounds of Boston, with Ned.
Day by day, month by month, I wondered how we would get through the quarantine, how long could we keep Nat happy living away from his beloved day program and group home, not fully realizing that we were, indeed, getting through it. Although Nat did ask frequently when he could go back, he almost always accepted the indefinite answer, which was basically we don’t know. I felt lucky when he ended the conversation with the Nat seal of approval: “Okay.” Normally, Nat cannot stand to hear uncertainty, he cannot handle gray areas. So much “no, we can’t, not now. Because of 'the sickness' [what Nat called Covid], maybe in the spring…” But Nat's equanimity was not magic. Ned developed weekly calendars that showed what classes he’d be taking, drawing out all the sameness but also the variety of the days, and Nat managed to cope with all of it.
In the decades that we have been Nat’s parents, we have worked together to learn how to take care of him and nurture him. We have seen him through a scary pre-adolescence and volatile teenage years because we learned as quickly as possible what to do. We observe, analyze, discuss, brainstorm. We try things. We wait it out. It gets better. The 80 percent divorce rate in autism families is a myth; our marriage was actually strengthened because of it.
But that’s not really all of it, in the end. Yes, we learned the ins and outs of autism, the techniques, the resources, the how-tos. But we were also learning all about Nat, his depth and eagerness, his easy smile and his sweetness.
And now spring is here. Trees are alive again, the earth is soft and welcoming. Nat has gone back. And I miss him so much. I realize just how much I have really enjoyed him living here this past year. In the midst of a deadly pandemic, I have not felt the chill of dread over how I would keep this guy alive and happy. We just stayed inside our home, ourselves. We sunk into our solitude and shrunk down our wants and expectations. We got to know one another again. I know Nat so well now, I can predict how he is going to respond to most things. And the beautiful part is, he does the same with me. We understand each other so well that I think new selves have risen again, unafraid, laughing, and looking forward to being together. No fear. No dread. In fact, I guess you could call it joy.