“Creating a Meaningful Life in the Midst of COVID” – Nancy

It’s 3 AM and I can’t sleep. Again.

I came across videos yesterday of Sam completing tasks for the learning program we were doing for a while (Relationship Development Intervention-RDI), and I was reminded, once again, how little we really engage with him now, how few activities he engages in. It bothers me.

I had aspirations of Sam being a highly-skilled young man who would be self-sufficient in adulthood. Lord knows he’s more than capable. But somewhere along the way I got lazy. When he was in school, I felt like home should be his “down time”. Now that he’s home full-time, his down time has become his full-time job. I tell myself that when he’s a client of Good Works Farm’s day program, his day will once again be full of variety, movement, engagement, and meaning, so I pour myself into getting the program up and running. Meanwhile, Sam is doing the same two puzzles over and over while watching Mickey Mouse Clubhouse. I might force him to walk with me to the mailbox or go bowling once a week, but mostly he’s on the floor, doing the same puzzles. I worry he’ll get a blood clot from sitting, legs folded, for hours at a time. But any attempt at engaging him in another activity, or God-forbid, picking up the many unfinished puzzles strewn across the floor, is met with extreme distress, raised voice, hostility. I get frustrated, or tired, and give up. I tried, I tell myself. But did I? Really?

Then I’ll get ambitious and make a new “schedule” or “checklist” and I’ll use it with him for a day or two until he catches on that I’m attempting a coup from the status quo and he promptly puts a stop to it. I think about hiring someone else to do the dirty work, then remember how close we are to the day program and decide to wait. I wouldn’t want to go through the process of interviewing and hiring someone just to let them go in a few months. We haven’t had the best experiences with outside help, and the PTSD alone keeps me from acting on that thought. He’s safe in the living room. He’s entertaining himself. He seems happy enough. This is only temporary. Just get day programs started and the problem will solve itself.

We are closer than we’ve ever been with day programs. Our application is UNDER REVIEW. That could mean approval within a few weeks. But that doesn’t mean the program begins the day we’re approved. We’re going into winter, and while there’s heat in the church where we’ll meet, we can’t spend our day there. I’m struggling with planning how our little group will spend its time. How will we fill our 30 hours a week in the community? In winter? During a pandemic?

Meanwhile, Sam becomes more and more entrenched in doing his own thing. It’s going to be a real shock when he goes from 90% independent activity to being part of a group. Choice is going to be a big part of his new lifestyle. He will have a choice over which activities he does and with whom. Right now, his choice is puzzles alone. In an effort to introduce the concept of choice, I made yet another schedule folder. In the left column, he can choose between two jobs for the day and two fun activities to add to his schedule. He’s supposed to choose between them and put the activity onto the “to do” column in the center. When he completes it, he moves it to “finished” on the right. It’s a beautiful concept. He hates it. When asked to choose between the two jobs, he says “No, thank you” over and over until I choose for him. Choosing a fun activity is just as painful. Me raising my voice with the veins sticking out on the side of my neck, “FRISBEE OR BASKETBALL!?!?!” takes the fun out of it completely. When he doesn’t choose, I choose to make myself a cup of coffee and sit on the patio until my blood pressure returns to normal. The folder now sits on the floor as another prop in his room of organized chaos. “Like dat” he’ll say, as he positions it just so, telling me to leave it as is.

A year ago, when we bought this farm, I had visions of Sam engaging in farm life, feeding the animals with me, being outside more, hiking with me and being happier than he was in the suburbs. We’d have acres to play Frisbee, soccer, fly kites. We do have acres, but he’s never been more sedate. And I don’t know how to get him moving.

I recently spoke with a woman whose adult son faces some of the same challenges as Sam. As she shared about all her son does in a day, the guilt I felt became palpable. “He works in the community,” she said, “but he can only stay on task for 20 minutes before his job coach has to put him back on task.” If I drag Sam the ¼ mile to the mailbox, he’s talking the whole time about his puzzles, which he can’t wait to get back to. I sympathized with her son’s inability to work independently while mine can’t engage in a non-preferred task for five minutes. I tell myself, and other people, that I’m lucky. At least Sam can entertain himself. And it is nice until I look up from my computer at one in the afternoon and realize I haven’t fed him lunch and that he’d been doing the same two puzzles since breakfast. Another wave of guilt. What am I doing? Do I just keep putting nose to the grindstone and get the program going so he’ll have a meaningful life, or do I take time away from creating the program to actually give him one?

Before COVID, we had a pretty decent schedule of outside activities. Then everything STOPPED. I’ve successfully added a weekly bowling trip back in. It’s often just the two of us in the whole building. I had swimming on the schedule, too, but when he began to protest going I respected his “choice” and we haven’t been in months. The movie theater opened back up and I got a letter from guest services saying they’d honor his inability to wear a mask, then it closed again. The stress of going into public, especially with an unmasked, often uncooperative, young adult who doesn’t understand the new “social distancing, temperature-taking” rules is often not worth it. People used to look at him funny because of his mannerisms, now they look at him like he’s a disease carrying pariah. I’m angry that the world that was so inaccessible to him before is even less so now. At least people used to smile back at him before, now he can’t even see their faces.

We can’t continue like this. This is not a life. At least not the one he deserves. I’m going to have to take the bull by the horns and make some changes. We’ve been stalled long enough.

A good friend has a mantra she repeats to herself when she feels overwhelmed…”but what can I do?” I can’t fix COVID. I can’t lift the restrictions. I can’t make the world a friendlier place. I can’t overhaul his entire day. But I can make one small change. I can add one activity to his day that challenges him to think and engage with me. And then we can build on that.