Feature Issue on Crisis Management for People with Intellectual, Developmental, and Other Disabilities

We’ve often compared our life to Jenga, the game (derived from the Swahili word Kujenga, meaning “to build”) where you construct a tower by stacking blocks and try to keep it from falling as you change out or remove blocks.

We worked really hard over time to put the “blocks” into place so that Derek’s life reflected what he wanted with the supports he needed. Those “blocks” represented a job he enjoys, volunteering, meaningful relationships, sports, Toastmasters, and his Bible study group. His daily life and routines included all of those things he values and life was good!

And then March 2020, came along and, boom, the pandemic was here. It felt like everything we had put into place was falling apart. Everything just stopped. There was so much we didn’t know. How long would this last? What is safe? It was very stressful for everyone!

I (Derek) had been living on my own in a townhome near my family for nearly a year at this point and had been working in maintenance at a fitness center for about three years.

Work has been a big part of my life, and right away I missed my job and co-workers. I loved greeting the customers and I felt like my co-workers were like family. I worried about when I would be able to go back to work. The fitness center was closed for a while but is open again, though I have not gone back yet. I’m waiting for it to be safe for me.

I also loved working out there to stay in shape for Special Olympics. For my sports, I have to keep healthy. My sports are softball, basketball, bocce, and bowling. I also serve on the Athlete Input Board. I volunteered at a nursing home, calling weekly Bingo games. I like to visit with the residents and keep them company. I worried about them and about when I could go back to visit and play bingo.

At first, we thought the shutdown might last for a couple of weeks or a month. Eventually, we realized the calendar was going to be empty indefinitely.

We wondered, “Now what are we going to do?”

We decided to fall back on what we know. I (Brenda) provide training in person-centered thinking and am a LifeCourse Ambassador. I suggested to Derek that we sit down and use those tools to figure out what is important to him and to create a new routine that reflects what makes him happy and stay healthy, with a sense of purpose. He needed to have things to do and things to look forward to each day.

We did just that, and because Derek loves technology, we did it on Facebook Live .

We did a series of webinars on how to create a vision and make a plan for getting through the pandemic. We thought about and wrote down resources and supports to stay active through the pandemic. Then we put together a new routine on a calendar to add structure to each day. We titled it "Derek's Next Few Weeks ."

Derek’s first priority was to be healthy and active. We talked about what he could do to stay healthy, which included wearing a mask, washing his hands, and keeping a distance from others. We talked about the ways he could stay active now that sports weren’t an option. We wrote down activities that included walking the dog, being on the treadmill, and going out every day to get the mail.

Another priority was staying connected to family, friends, and groups. Derek loved calling Bingo at the assisted living center, so we talked about doing that with friends over Zoom, and he continues to do that today. We send out an invitation and people from all the parts of Derek’s life join in the fun about once a week. It helps Derek, and others, too.

We also talked about what I (Derek) didn’t want to happen in those first few weeks. I didn’t want drama. I don’t like to feel stress, depression, and anxiety. I also didn’t want to be around people who were sick, so social distancing was important to me. And I didn’t want to have my routine change all the time. So, we made a schedule for the week and stuck to it.

Listening to the news was stressful and early on there was information overload, and yet so few answers. We talked about who Derek could contact to ask questions and share his concerns.

Another thing that helped with that emotional side was talking with a family friend, Dr. Karyn Harvey, a psychologist and specialist in trauma-informed care. We created a webinar series with Dr. Harvey on building resilience during the pandemic. 

One of the most important pieces we talked about was being optimistic. Having hope and a feeling that things are going to be alright and we’re going to get through this gave comfort to both of us.

Derek likes routine, technology, and connection with family and friends, so we talked about all the ways he could use technology to stay connected and build a new routine of things that really mattered to him. We got through those two weeks and beyond.

These days, I (Derek) host a Zoom Bible study and a Zoom book club, which my direct support professional facilitates. With a friend who is a musician, I also host a weekly Zoom music party and stream it on Facebook live, and I volunteer at Feeding South Dakota, a local food bank.

It’s impossible to overestimate the power of relationships. Having a broad social network creates opportunities to reach out to others, keep learning new things, and find support when you need it.

Finally, really listen to each other and be intentional. We spent years developing our other routine, and it was gone overnight. Our person-centered approach to getting through difficult times has brought comfort. We feel less fear when we have some predictability and control over what we are doing with our lives. Hope and optimism made rebuilding a little easier and truly reflected what really mattered to Derek.