When the COVID-19 pandemic started, my first thoughts of concern for our patients and all people with Down syndrome were around the virus and the potential of becoming severely ill with COVID-19. We have learned much since then about those at higher risk of severe cases of COVID-19, and we continue to learn more about risk, prevention, and treatment. I am still concerned about the impact that COVID-19 can have on people with and without Down syndrome. However, I feel hopeful because of the greater availability of treatment options and the progress that has been made in developing a vaccine.
My second concern at the beginning of the pandemic centered around the psychological and mental impacts of COVID-19 on people with Down syndrome. Our efforts to protect our physical health have required making many changes to our routines, schedules, and other aspects of daily life. Many people with Down syndrome who come to our clinic use routines or "grooves" to help them function and manage their worlds. This is also true for many people without Down syndrome; however, in our experience, many people with Down syndrome use routines more strongly. As this New York Times article by Kate Murphy points out, our brains are wired to predict what will happen next. It can be upsetting when changes occur and our predictions are incorrect. Murphy writes, "When there are discrepancies between expectations and reality, all kinds of distress signals go off in the brain. It doesn't matter if it's a holiday ritual or more mundane habit like how you tie your shoes; if you can't do it the way you normally do it, you're biologically engineered to get upset."
So how do we manage during a time when our routines are altered? Murphy explains, "The good news is that much of what we miss about our routines and customs, and what makes them beneficial to us as a species, has more to do with their comforting regularity than the actual behaviors. The key to coping during this, or any, time of upheaval is to quickly establish new routines so that, even if the world is uncertain, there are still things you can count on."
Is this also true for people with Down syndrome? Does establishing new "grooves" help people with Down syndrome manage the changes associated with the pandemic?
Through discussion with hundreds of people with Down syndrome and their families since the pandemic began, our sense is that establishing new grooves can be a very effective strategy for people with Down syndrome. New grooves can help manage stress caused by changes to routine as well as help people stay healthy and avoid becoming ill with the virus. New grooves bring back feelings of comfort, a sense of order, and the improved ability to manage one's day. Establishing new grooves is more productive and reassuring than waiting for the uncertain time when we can "go back to normal." Putting these new routines in a visual support tool has also been helpful for many families we have talked with. Visual schedules and calendars help people with Down syndrome (and people without Down syndrome) with that sense of order and predictability. The article linked here discusses use and benefits of visual supports and the page linked here shares visual supports on a variety of health and wellness topics.
As I talk to people with Down syndrome and their families, it is clear so many are trying very hard to "make this work." It is a pleasure to hear of the creative new calendars and schedules being made and the establishment of new routines to promote physical and mental health. It continues to be a steep and challenging learning curve, but many are making it work. If you have successful strategies you are using, please submit them here and we will share them with other individuals with Down syndrome and their families. This is an important time to continue to support each other.
The pandemic will end. We look forward to that time. Until then, we encourage embracing this opportunity to develop new healthy grooves and help people with Down syndrome adapt to the necessary changes. In addition, we are thinking about (and encourage you to think about) what we have learned about adapting to change and what habits, patterns, or grooves we have established that we will want to continue when the pandemic is over.