I want to start with so much love and gratitude for health-care workers and hospital workers as well as all the delivery drivers and various service providers that are all risking their lives for the rest of us. THANK YOU AND WE OWE YOU MORE THAN THANKS.
Welcome back to the blog! I have fixed the mobile settings so that now when you bring it up on your phone, you shouldn’t see four-year-old articles and should instead see something like the regular homepage. Also, I deeply apologize for not posting last week.
Yes, it’s true that the quarantine is taking a mental and physical toll on Dar and on myself. Dar making near-constant autistic noises interrupts my workflow. The occasional, unpredictable screams throw me off. (My poor neighbors!) Dar’s “fort/da” syndrome is a bit of a time-suck. I should write a whole blog post called “fort/dar,” but as a brief over-summary, “fort/da” is a Freudian term for presence/absence, and Dar has this tendency to hand me things and then need for them to disappear. If I don’t actively hide them, he pushes them on me, including things left in my hand. So I’ll hide the item, and maybe 10 minutes later, or maybe much later, he’ll need it again. I like to think Dar is trying to force himself through every toddler’s “fort/da” stage (peekaboo! Where did I go?), but…my larger point is that Dar is often distracting even when he’s not melting down.
Dar gets into things, then he stops. Four weeks ago he was all about slamming a particular door again and again. Then he stopped. Three weeks ago he was all about taking baths and getting out and dragging his wet butt on our hall floor. Then he stopped. Two weeks ago was all about climbing our car and tee-tee-tee on the roof. Then he stopped.
One thing that hasn’t gone away is that Dar’s belly button is bleeding off and on. Somehow or other, a few weeks ago, it got a cuticle-size (very small) cut. If your kid had done that, it would have healed by now. But Dar rips Band-Aids off and refuses to leave his belly button alone. So he picks at the scar and reopens it. And then he walks to the kitchen sink to pour water on it. This makes his clothes wet; he often takes them off. So part of my job these days is just re-dressing Dar.
All this very much said, Dar may be adjusting to lockdown better than I am. For example, for the first few days of home isolation, Dar would inevitably have a meltdown at some point during the day. I interpreted this to mean that he was accustomed to going out and frustrated at not going out. I would drive him around, sometimes to the Berkeley Marina where I took pictures like the one just above. After a few weeks, though, he no longer seems to have these daily meltdowns. (But we all have to find ways to exercise anyway!) The first few weeks after he transferred out of Thousand Oaks, Dar would try to get out of the car at T.O. as I dropped off his brother. But then he stopped. He adjusted.
Mostly, though, Dar has adjusted to life under lockdown. Maybe he even likes it, the way pets like the extra attention. I don’t know that I adjust as well as him. Certainly, I don’t like this quarantine becoming anything like a New Normal.
There’s a sort of funny meme running around about how we’re all responsible for COVID-19. Every person comments with something they did or didn’t do on January 1st or before (tied the wrong shoe first, ate a donut, broke up with a lover, whatever) which brought on this mess.
In my case, in 2019, I received training from the state of California to formally care for Dar. A social worker came to our house to determine Dar’s monthly hours of eligibility. Because of Dar being a rather severe case, he is eligible for about 226 hours of caregiving a week. Twice a month, I fill out online forms. On occasion, I claim to be “caregiving” Dar for as many as 10 hours on a weekday. During 2019, I sometimes felt pangs of guilt over a claim like that. I says to myself, self, I says, do you truly deserve credit for taking care of Dar for 10 waking hours on a weekday where he spent 5 hours at school and then came home for 3 hours of ABA? Reader…I did not. On the other hand, despite his medication, Dar often wakes up screaming in the middle of the night, and I inevitably come to his room and shush him for hours so that wife and brother can sleep, and on those days I more than earn those ten hours.
Early in 2020, pre-pandemic, the agency announced that at some point in 2020 we would have to do more than just enter a number for a given day; we would have to give a start time and end time, like timesheet-submitters the world over. I says to myself, self, I says, what times are you going to submit? Start at 3am? Put in a regular 9-5 that the school board could contradict?
Then: pandemic. Now I’m caregiving Dar 21 hours a day. (His ABA person still comes for 3 hours, thank the Lord Jesus Jehoshaphat Christ.) Now, if anything, I’m entirely lowballing the amount of hours I’m being paid for. So that’s what I did to cause the pandemic.
I keep hearing from parents who can rely on schools and their kids to work with each other long-distance, and leave the parents out of it. Well, that’s not the case over at this house, not with either kid. Though I’m still teaching undergrads online, I have more time at home than my wife (who still works 40 hours a week from home), so I wind up doing all the daily instruction for Dar and at least supervising all the daily instruction for his brother…cause if I don’t, they each drop the ball.
Coming into 2020, I had a plan. Now that I was being paid almost like a normal person, now that I had a few minutes between caregiving duties, I would scale back on teaching to focus on volunteering for green causes and some Democratic causes. That’s the sort of work makes me feel better about myself and better about whatever minor legacy I may leave on this planet.
Here on Earth Day 2020, I would just like to admit that I haven’t done all I wanted. Oh, I’ve planted a few trees and a lot more plants in my garden, but I could be doing a lot more. And I’ve been meaning to start text-banking for Dems again, and I’m sure I will…soon. I also feel like I should be a lot more productive with writing and blogging and general content creation, considering all the extra time I seem to have.
The truth is that after the caregiving and teaching (my kids, my college students), I find myself somewhat paralyzed by…you know, by all of it. Personal meets global and has this big baby of worry. I personally feel fear for my family and friends. I wonder what the heck happens to Dar if something terrible happens to me and wifey.
But also, the news. Let’s not get into every little news item here but…I think we can all come together to agree that this is a frustrating time in American history. I have been trying to stay positive and to stay unified with my more conservative friends as we battle a common enemy. But our current leadership seems to forget that need for unity so…it’s hard. When tens of thousands of Americans are dying of a new threat, the best leaders can offer is truth, compassion, and consistency. Granted, some governors have shown this, arguably including my own, Gavin Newsom. But Lordy, how I wish we would see this from the White House.
Some of my conservative friends believe I criticize anything the current President does; in this case, the truth is closer to the opposite. Oh how I wished for his success fighting COVID-19, instead of responding only to the day’s news, unleashing petty grievances, and relentlessly contradicting his own statements. I would love it if the government had been given over to VP Mike Pence, who at least seems like a steady, normal person. Pence could have easily been President; he could be President tomorrow. The current guy seems to want to leave the White House even for a day; I’m good with that! No one is forcing him to remain in office. He clearly hates the part of the job that requires him to work for Americans. We and South Korea got the virus at the same time. They have had fewer than 500 deaths. We now have more than 50,000. No partisan doublespeak can ever erase or minimize that.
Somehow all that adds to my stress and keeps me from even wanting to do anything productive.
On the other hand, every day I reflect on how lucky we are. We have a house that’s big enough to social distance ourselves…from Dar when necessary. Neither wife nor I have lost our jobs. We are not sick with COVID-19, at least so far. I can zoom with friends. I can take nature walks with or without Dar. Neither of our kids are missing any major milestones like a high school graduation (although Dar’s brother’s birthday is in May and I have no idea what we’re doing about it). The weather has been good. I’m almost lucky that both of my parents have passed, so that I don’t have to take care of them.
Maybe I just want a hug.
I like the people who note that “social distancing” is a misnomer. We really need to practice physical distancing. That is important. But otherwise we should try to be as social as possible.