Susan Senator

I wrote this two years ago.

I’ve been wondering lately if I can become a ghost after I die. I am not looking to die — not at all. It’s just that I have a severely autistic son who is 24 and I can’t imagine how anyone will look out for him the way I do. Even though Nat has two brothers, who are lovely young men — but at 16 and 22, they have begun to grow their own lives. I know they will be there for him in one way or another, but still, it is not the same. I am going to have to depend on the kindness of strangers.

Over the years, I have had to let go of Nat in one way or another. The first day of preschool I sent his father to go with him. I’m ashamed to say, I just could not go. The break had to be clean for both of us. It was anything but. My husband spent the morning out in the hallway, listening to him cry for us, wondering how to help him get through it, knowing that he could not go in. It’s hard enough explaining to a typically-developing child why he has to go to school, but how would we get Nat to understand? It felt like abandonment to me.  I don’t even remember how I spent my day — it is lost to me, as so many of my days felt at that time. I even remember feeling like a ghost when I returned with him soon after this, to our playground, hollow inside, watching the other moms and their perfect kids.

He got used to school, of course, and so did we. But the fear, irrational perhaps, was still there, its clammy breath at my back. I don’t even really know why I was so afraid, but I think it had to do with not knowing how he felt about it. My question — unanswered — is always, “how much of his life does he understand?” If one has such little language, such a choppy processing ability, how can we know what he knows? It is all so raw, a cut inside that just doesn’t heal. I grieve even now that he’s 24, because the limitations and the sense that I have somehow abandoned him never quite go away. I don’t mean to sound entirely gloomy, it’s not like that, either. Nat has brought me some of my life’s deepest joys. His first sentences, first friendships, first job — all of these milestones have been infinitely sweeter because of the long wait, the hope growing cold.

I felt a similar lacerating pain when Nat had to move out, to live at his school. He was nearly 18 then, and people tried to comfort me by saying that it was normal for kids to move out of their parents’ homes at 18. But I was just so ripped up at that point that their logical words just seeped right out of me. Just like when he was three, and off to school for the first time, he had to go. Living with him was threatening to destroy our family. We could not manage his anxiety and he became frighteningly aggressive and out of control with us at times — once, he attacked me at the subway platform and another time he broke a window with his head. But my bond with him never broke. Even when I was scared of him, and terrified for him, I always knew him, I always felt the soul inside. But clearly he needed to live with more structure, with trained people who understood how to help him calm down. But I was sick about it, for nearly a year, crying bitterly every Sunday when we dropped him off again — even though he was improving. I was sure that I’d failed him.

So how can I get my head around planning for my ultimate departure? There is no state mechanism set up to help parents like me, no bank of trustworthy mothers who would take my place. I hear that the state “takes over” if there is no place for the disabled adult to live, but what is that like? I can’t leave Nat’s life to chance. And how does this work for the thousands of others in my position? It is probably somewhat like taking over for aging, ill parents. Except that is kind of a normal stage in life. There has never been anything normal about the way I have had to parent my son. My connection with him, though strong, has always been amorphous, spiritual, heart-to-heart. Our relationship is always present tense, it resides in being with each other, breathing the same air together. But when I’m dead, that connection will be severed. He won’t be able to know me anymore; we won’t be on the other side of the door, or here for him on weekends. Perhaps the most horrible thing about that, my deepest, bottomless fear, is that in being dead, I won’t even be able to care.