Recently, driving home from an appointment, I found I could not stop crying. My neck and shoulders were killing me, as usual, and I had to figure out what it was. For the longest time I’ve been saying the pain is from when I was “doored” on my bike (a car opened as I rode past, sending me over my handlebars and onto my right shoulder). Hours and hours of physical therapy only resolved some of it. Well, I thought, maybe the pain was coming from my dance workouts. I altered this, cut out that. More physical therapy, and finally, the pain has taken up residence in my neck, now, too.
But suddenly, yesterday, the truth flashed before my eyes and I could see as clear as day what it was about—the enormous stress I carry around all the time: the constant worry, on some level, about my autistic son, past, present and future. I do not mean that he himself stresses me out. Although that certainly can be true, like with any other child; the pain I am talking about is that I cannot give him the best life—the life he deserves.
Granted, we all worry about our children, grown or not, and we feel their pain, their struggles. But having a loved one as dependent as my oldest son Nat goes beyond the typical parent worry. What I want is for Nat to be healthy, happy, and safe. But in order for him to have that he must be actively involved in his life. He must have tasks, goals, responsibilities. He must have a sense of purpose, like anyone else. He must have people who “get” him, and who know what makes him tick—and who care, and who have the energy to do something about it. But post-pandemic staffing shortages have made it hard for Nat to do what he used to do: work and volunteer in the community every day. Without that meaningful employment, Nat is relegated to spending two weekdays in his group home with not a whole lot to do.
We recently found a wonderful private program that secured him a volunteer position at a food pantry. He loves this job. The problem is, our state agency will not support this private program for Nat, and we are paying out-of-pocket. That will eventually be unsustainable. So I am spending a lot of money and a lot of my mental energy figuring out how to make this solution work, with the ever-present fear that without it, he is going to lose everything if he starts becoming restless from inactivity. He will regress and become frustrated, angry, and self-injurious or aggressive.
Nat’s current daytime occupation is only a part of what I carry around. That is what I worry about today. But there are also worries about his future that burden me. There are more articulable problems like can we keep him healthy given his communication challenges? He still does not know how to tell us if he feels sick. He may not ever understand how to take care of his teeth and he may lose them someday because of this limitation.
And there are the deeper, darker questions about his more distant future needs, and how I will get them met when I am no longer able to. Thankfully, Nat has two wonderful younger brothers who always assure me that they will look after him. But how realistic is that, with them living four hours away from him? And once they have their own families, and burdensome jobs of their own, will they be able to check in about how well he’s brushing his teeth? Will they be able to argue with the state agencies for a better day program for him? How will they even know if he’s happy, if I can’t even tell most of the time?
The answers are murky at best. And just like when Nat was very young, newly diagnosed, I have to let go of dreams and wants for him. My heart beats just as heavy and bloody as it did when he was five and was not invited to birthday parties, or 13 when the school stopped teaching him academics and switched to pragmatics, or 17 when I realized I could not keep him at home if I wanted the rest of my family to survive.
And so yesterday I understood at last that once again something had to give, or I was going to probably collapse from the pain. I realized that I was not going to be able to fulfill those responsibilities perfectly and maybe not even adequately. I was going to have to accept some degree of muddy imperfection, blurred details about this very vulnerable and absolutely amazing man’s present and future—or I was going to crumble under the pressure. And I am sad, so sad, that I have to let go of some of the things I want for Nat. How am I supposed to live with that?
There is no answer. But I have to live with that if I want to continue living myself. It’s the old oxygen mask rationale: you have to take care of yourself before you can take care of anyone else.