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.