Sunday, July 5, 2020

Summer of COVID-19

This has been a weird summer. Before COVID, the plan was that I would spend just over a month in Japan teaching and doing research, Sky would take driver's ed and go to tennis camp, Pink would go to sleep-away camp in the north woods, and then all of us would go to Europe for a couple of weeks before school started again. An ambitious schedule by most measures and maybe one that would have been a huge catastrophe. We will never know, though, because first my flights to Japan were cancelled, and then driver's ed, and then camp, and finally Europe. We went from having an exciting summer ahead of us to having absolutely nothing.

I know we are not the only family going through this particular reorientation, and I also know that it didn't start with the summer. But, it has gotten harder now that the kids are out of school, especially since I'm supposed to be working on my research. We are always in each other's space, and we all seem to cycle through pandemic-caused anxiety or depression pretty regularly. The lack of clarity about when this will end makes things harder; it's a lot to process. Some days I find the changes so overwhelming, I don't know how I will keep going.

But other days, like today, I feel like maybe I have things figured out. I/We have adopted some practices during quarantine and social distancing that I/we didn't have the time to do as much before, and when I think about where we were as a family and how things were going with me and Ren a year ago, I am amazed and even a little glad that the pandemic came along to remind me to slow the heck down.*

So, here's what I've been doing. I'm curious to hear what you all are up to and how you're handling this, too.

Sunset over soy field.
1. Family drives -- At the end of May, it became clear it was time to replace our aging minivan. Thanks to COVID and my mad negotiating skills (I'm not kidding--this is the one thing you don't want to go toe to toe with me on), we were able to save about $10K on a new one that has an entertainment system that makes the kids SO excited that they want to go for drives "just because." Ironically, of course, the pandemic and concerns about spreading it mean we don't really have any place to go, so many nights we just get into the car and drive. After living here for seven years, I finally feel like I am starting to get to know the place a little! Sometimes only Stow goes along. It's a great way to help him calm and settle down before bed. Other times, everyone comes, and we swing through the drive thru and pick up soft serve ice cream cones to eat while we explore the back roads and rural towns not far from where we live. Many nights, Ren and I watch the sunset with the kids settled calmly in the back seat and all feels right with the world.

Country road.

2. Family hikes -- Last summer, when we went to Colorado, nobody died, and everyone proved their  affinity for exploring the outdoors. So, since the big trip we had planned to France and Italy fell through, Ren and I decided that this would be our summer to visit as many state parks and forest preserves as we can, either on day hikes or on overnight campouts.

Three kids hiking.
If I am being totally honest, very few of these hikes have been easy or gone well. Sky starts perseverating the moment we get out of the car and Stow HATES bugs and  being hot, which is a challenge because he overheats very easily. Meanwhile, Pink ALWAYS feels left out since so much of my time on these hikes is spent trying to keep Sky and Stow from spiraling completely. Each time we go, I've been trying different things to see if it gets easier. I do a social story about hiking and explain exactly where we are going and for how long, and once we get to the site but before we set out, I pull Sky aside to remind him that no matter what, it will be ok --it turns out his biggest anxiety is that Stow will do something mortifying or dangerous. I make sure Stow has a towel and his own bottle of ice water, and I make sure to spend at least part of the hike walking with and talking to Pink (and Pink alone). One hike we managed to make it a whole 200 meters before things fell apart, so I am choosing to maintain hope! Even with the behavior struggles, I am trying to focus on taking in the sights and enjoying what I see, hear, and smell. I'm also trying to be grateful for the fact that we are together. It sure beats spine surgery!

Very hot Stow with towel.
3. Meal planning -- I think the biggest change to come from the pandemic is that I meal plan now. Ren and I have always cooked almost all of our meals, but we've never meal planned. That degree of thinking ahead seemed harder than just making something based on whatever we could find in the refrigerator or freezer. Between Costco, the Japanese grocery, and our nearby grocery, we always had the makings for gyuudon,** fried rice, or spaghetti, if nothing else. When things shut down, and our state enacted stay-at-home orders limiting unnecessary trips out, we went from two or three grocery trips per week to one. Ren falls in the COVID high-risk category, so I have been doing all of our shopping since this began (boo!). That means that every Tuesday since mid-March, I have taken my grocery list (another novelty for me) and gathered enough groceries to get us through the week. To make this work, I actually have to know what I am going to make and what ingredients I need BEFORE I get to the store. It's funny how accomplished I feel when I do this. I don't know why, but even though we are feeding the kids just as well as we did before the pandemic, being more intentional about what we will eat for the week makes me feel like such a grownup.

The kids can't believe I planned this one. Why would anyone intentionally buy so many veggies?!
4. Meditation/ Yoga -- Yeah, I started doing yoga and meditation regularly. It helps. Of course.

5. Writing -- You wouldn't know it from my painfully long silences here on the blog, but I have been writing a lot during the weeks we've been isolated from work and friends. During my teens and early 20s, I kept a journal. (NONE of what I wrote back then is worth being seen by anyone other than me, and it's even hard for ME to read it.) Once I was married and had kids, I started writing fiction and this blog and somehow lost the ability or the desire to journal. When the pandemic hit, though, I realized I needed to record what was happening, if not for future generations, then to help me remember this weird and challenging time. I fear that most of what I write in my journal is uninspired drivel, but writing has kept me from completely losing my mind, so that seems good. The problem with all of these journals from my 20s and now is that they need a good generation or two to marinate, so I am hoping that they won't be read by my kids or my grandkids. Maybe by the time my great grandkids come along, they'll seem insightful!

None of what I/ we have been doing is all that inspired. In fact, most or all of it is the kind of thing my therapist or doctor has recommended at one point or another to help me manage my depression. It's funny that it took a pandemic for me to slow down and try some of these things. Then again, that seems about right.

How about you guys? Are you all doing ok? How have you been holding together?






* Don't get me wrong, there is a lot that is really hard about this, especially given how challenging change and surprises can be for kids on the autism spectrum, but I am choosing not to write about that stuff right now. Also, COVID-19 sucks, so if we could have avoided it altogether, OBVIOUSLY that would have been better.

**Beef bowl 




Saturday, May 30, 2020

Right Ball

On the evening of the first day of e-learning for the kids, Stow spilled a huge cup of Sprite on Sky's computer and notebooks. Sky had accidentally left his computer in our gaming space when he collapsed on the nearby sofa, worn and full of anguish from an anxious day of doing school online. Unexpected changes and lack of certainty are hard for all kids, but they can be crippling for a kid on the spectrum, and Sky was spent. The next morning, when we discovered that the computer was fried, I knew there was no way we were getting through the pandemic and e-learning if Sky didn't have a working computer, so I got him in the car, we drove to Costco and we bought another one. Sometimes, even when money is tight, it makes more sense to take the hit.

Since then, we've had four school Chromebooks (for the younger two kids) crash and my work computer go kaput. We've also had a PS4, an iPad, and a kindle stop working. Pink has started referring to our house as a tech black hole. The only way I finally managed to get the internet to work fast enough for me to teach online was by using an ethernet cable (thanks, IT!!) long enough to snake through the living room, through my study (which had been taken over by the kids), and down the steps to my temporary office in the basement. Even then, when conditions weren't right--and almost ALWAYS related to Zoom--the internet for the whole house would go down. The weirdest day was when my Zoom meeting worked, but no other internet in the house worked.

My ethernet cable making its way in the world.
That's kind of how our pandemic has been going. Today marks the beginning of our twelfth week of social distancing. The kids left school for the weekend on March 13th and never went back. My classes let out for spring break the week before that, and by the end of my spring break, I knew I'd be teaching remotely for the foreseeable future. Like so many families, we experienced lots of heartbreak. Sky missed his first high school tennis season. Pink missed her first flute concert. We had finally gotten Stow set up with a one-on-one aide and were looking forward to see how that change helped him. We haven't been able to see my elderly parents for months and don't know when we will again. We've missed birthdays and other special occasions.....*

It has been HARD. Change of routine and loss of support structures has led to daily meltdowns, some quite traumatic. We've seen regression and loss of skills that make us nervous going forward. The challenges of parenting kids whose inflexibility, anxiety, and inability to really grasp why this is all happening can make a day seem eternal  Not being able to go out for a walk or a drink with a friend to vent has been exhausting. To be honest, the combination of increased stress and uncertainty and decreased in-person support has challenged me and Ren to dig deep into our resource reservoir. And what we've discovered is that we don't have enough to manage this on our own. But, we also have figured out different ways to take turns burning out.

The days are long!
Then, somewhere around week six, it struck me that we were somehow uniquely ready to deal with this situation in a way that many other families might not be. I realized that although this was all Very Hard, we were doing ok--the kids were getting along, Ren calm and relatively pain free, and I wasn't completely paralyzed by stress. That's when it occurred to me that much of what we've experienced up to now had prepared us for this. Thanks to Ren's seven spine surgeries and thanks to special needs parenting, we've had our lives stop in their tracks, and we've had to learn how to adjust when something that was working stops working.

Talk about pandemic readiness skills! Every time Ren has a spine surgery, we go from doing tons of activities to doing nothing. The world around us keeps going, but we freeze in place. Depending on the surgery, this can last anywhere from a couple of weeks to several months. If you've read my posts from those times, you know that there is always a moment where I worry that things will never be ok again. I worry that the surgery and all of the trauma surrounding it have taken us so far out of our "normal" lives that we might never find our way back. But, every single time we have come out the other side wiser--and a little more weathered--but ok. The waiting is the hardest part, but I am learning to lean into it and to believe that everything is going to be ok. It's going to look different. It may not be easy. Some of us will lose more than others along the way, but somehow it will be ok.

I'm also trying to laugh. A lot. This (see pic below) made me laugh yesterday. I don't know why I didn't see it before. I'm sure it has been in the garage FOREVER. Maybe I just didn't pay attention. In Japanese, it says denkyuu, or light bulbs. And, to be fair, the word for baseball is yaKYUU using the same kanji character, but I haven't laughed this hard in a long time.

Right ball
Make sure you're paying attention! Laugh together. Cry together. Keep making your way together. It will be okay, somehow. Even if it doesn't feel like it, it really will!

Right ball, you guys. Right ball.



*These are just examples, of course, and I also know we have been lucky to not have lost as much as so many other people have lost.

** Also, this post is completely insignificant in light of what is happening to black people all across our country right now. Please, listen to black voices, support them and don't ask them to tell you how to help. Stand with them, listen to them, and let them tell you their experiences without being questioned. Also, here are some places you can help.