Question:
My son has started spending more time in his room since his day program closed earlier this year. He used to be very social, talked and laughed a lot, and loved to take walks in the neighborhood with me. Now I can barely get him to join us for meals. Do you have any suggestions to help him engage with us?
Answer:
Many of us have felt and continue to feel stress due to the COVID-19 pandemic. Stay at home orders; shifting from in-person to virtual school, work, recreation, and fitness; fewer interactions with family and friends; and worrying about the potential of getting ill can all weigh on us. Additionally, this is on top of the stress we normally experience from our day-to-day lives.
This is true for people with Down syndrome as well. Some people with Down syndrome we see at our clinic have said they are concerned about getting sick with the virus. Some have reported feeling stressed by the near-constant news coverage. We know that many people with Down syndrome have a sensitivity to others’ feelings and what is occurring in their environment. We call that “empathy radar” or “social sensitivity.” This article describes social sensitivity. This can be a positive characteristic but sometimes it can also contribute to stress. If the environment around the individual is stressful, then he or she may absorb that stress. During this time, some individuals with Down syndrome have shared that they feel lonely, and some have responded, like the man in the question, by decreasing their interactions with others and participation in activities.
There may be many reasons why some individuals are struggling at this time. Some things to consider are:
- How does the individual usually manage stress?
- What changes to usual routines are particularly problematic?
- What resources are available to help manage stress, adjust to the changes in the daily schedule, and encourage activity?
- How are others in the family or living environment managing?
Here are some strategies you may find helpful:
- Remember that people with Down syndrome are finding these changes stressful, too. They may need some assistance with managing the changes.
- Identify which changes are most challenging or different during this time. Consider focusing on managing those changes.
- Determine if the individual needs more explanation of COVID-19. The unknown can be stressful for all of us and that is certainly true for people with Down syndrome as well. This page contains resources to help individuals with Down syndrome understand COVID-19.
- Recall previous success strategies for managing stressful situations.
- Assess the current strategy for managing the stress. What are others in the family or living environment doing? What is working? What is not?
- Set limits on exposure to topics related to COVID-19. Consider turning off the news, limiting conversations about COVID-19 and its impact, and directing the conversation to less troubling topics.
- Consider using stress reduction and/or sensory techniques to promote a sense of well-being. We have provided a few resources below.
- Stay active. Physical activity is very beneficial for physical and mental health. Physical activity can include walking/running, going for a bike ride, lifting weights, completing household chores, dancing, doing online exercise videos, and more.
- Explore virtual resources and activities. Over the last several months, the number of virtual opportunities has increased significantly. A list of some options can be found here. There are socials, fitness classes, art classes, book clubs, cooking classes, and more. Keep in mind that one size does not fit all. One individual may enjoy a virtual game night with a large group while another may prefer a one-on-one conversation with a close friend. Additionally, “Zoom fatigue” can also occur. Just because there are a lot of virtual opportunities does not mean that you and your loved one need to participate in all of them.
Some individuals may be hesitant to try new strategies. Here are some suggestions to address that:
- Give the individual choices. For example, you could say, “This afternoon, we are going to go for a walk or do a puzzle. Which would you like to do?” The choice becomes about which activity to do rather than whether or not they do the activity.
- Use visuals such as calendars or schedules. We encourage the individual with Down syndrome to participate in the development of these materials. For example, you could create a schedule that shows pictures of the activities and tasks for the day. This allows the individual to prepare and be part of planning his or her life.
In addition, we need to be careful that we do not attribute all changes to COVID 19. Could there be some other illness or health condition that is contributing? Consider scheduling an appointment with the individual’s health care provider. Whether it is related to the stress of COVID, a physical health issue, or other factors, it is important to consider the possibility that a mental health problem, such as depression, has developed. If an individual does not respond to efforts to assist him or her through these times, consider further evaluation.