Autism, a Pandemic, and the Holidays

 I put the Christmas Tree up today - one of my favorite rituals. It's like a three dimensional scrapbook - each ornament carries the memories of the Christmas when it was added to my collection. I started with a plan in 1984 - the year John and I married. I've added a few ornaments a year ever since. Jessica and Alex have their own collections. Jessica's collection is now a part of her family Christmas Tree. Alex's collection continues to be part of ours. Putting the tree up gives me a sense of tradition, continuity, and normalcy in an extremely abnormal year. 2020. The year of the global pandemic: Covid-19.

The first ornament from 1984.

Our tree - 2020

You'd think that during a pandemic, with lots of time on my hands since I retired from teaching in June, that I would do nothing but write. I have time. I have thoughts (oh, so very many thoughts - a pandemic ia a terrible thing for an over thinker like myself). Every time I try to write, I get stuck. I get ideas in the shower, while walking the dogs, while baking and doing dishes. I honestly can't stop the thoughts from consuming me. Sometimes, they even seem like thoughts worth sharing. But, like trying to grasp smoke, they disappear when I try to give them form.

I've been thinking about how the pandemic has impacted Alex and how, yet again, Alex shows me what resilience is. My fear back in March was how Alex would react if we couldn't see him regularly, if our visits changed. We had never in his life gone more than two weeks without seeing him. In mid-March when schools in Wisconsin sent everyone home, Alex's group home also locked down. It would be more than two months before we would see Alex in person again. We learned to have awkward video chats with the help of his caregivers. We've learned to have one-sided conversations with Alex over the years, but the video chat was a whole new kind of awkward. It was comforting to see him and hear his voice.

After resuming in person visitation, that all stopped again in the fall when Covid cases in Wisconsin began to really escalate. As the scientists learned more about the virus, outside visits appeared to be safer than inside ones, so we were able to have some outside visits with Alex. He was not a fan at first. The visits were short and we couldn't really "do" much. We sat in the swing, which ended up to be quite awkward. Then we started taking walks around the block. Not his favorite activity, but it was better than simply sitting there.

It's just after Thanksgiving, and we were able to have a home visit with Alex. We took lots of precautions. Alex sees no one but his caregivers, who are masked. John works from home and we have very minimal contact with the outside world, outside of errands and seeing Jessica's family. Our "bubble" as they like to talk about is extremely small. I'm not sure if we'll be able to see him at Christmas. 

Like most everyone else, I've been thinking a lot about the holidays. It's so easy to get caught up in my feelings about what the pandemic is changing about the holidays. I'm feeling the pandemic fatigue we keep reading about. I miss my friends and family. I miss restaurants, traveling, and going to the theatre. I have cooked more meals in 2020 than I've ever cooked in one year before. The list of things that i didn't get to do in 2020 is long. The grief I feel over all of this is real. 

When Alex was young, the holidays were often complicated and difficult. He was easily overwhelmed and frustrated by the changes in schedule. We had to rethink how we did things and holidays tended to look different than we imagined them. Sometimes that meant they were more difficult, but mostly it just meant they were just different.

My father died on December 23, 1994. That year Christmas looked very different for our extended family, for obvious reasons. Dad had cancer and it became apparent that he didn't have much time left, so we. had an impromptu celebration with family members who lived close enough to drop everything and make the trip to my parents' house.

Alex and Grandpa Herb - Christmas 1994
My dad died about a week later.

Alex's stem cell transplant was December 28, 2015. Our Christmas that year was spent in the hospital. For the most part, it was Alex, John, and me for the 21 days Alex spent in the hospital and the time after in our temporary apartment. We had some visitors that helped us celebrate. Although that Christmas was difficult, I have warm memories of going through that time together. We truly did not know if that would be Alex's last Christmas and yet he's here, healthy and thriving, five years later.

Living through a pandemic is not an experience I ever thought about. When all of this started nine months ago, I never imagined that we would still be dealing with this so many months later. Alex has been amazingly resilient, yet again. His routines and his world keep changing, yet his attitude remains positive and strong. He can't tell me, but I often think that perhaps he isn't subject to the expectations that often cause me disappointment. I don't know if that's part of his autism or just part of his personality, but he seems much more able to roll with things than I am. 

Christmas will look different. I don't know if I'll get to see Alex. I do know that I won't be doing many of the things I'm used to doing. I also know that I've had to deal with grief and sacrifices and heartache before and will again. I'm hopeful that there is a light at the end of the tunnel when the Covid-19 vaccine is approved. I'm hoping that 2021 is a much better year than 2020. Until then, I'll do my best to remember the Christmases past, be okay with the present, and look forward to the future.