Life with COVID-19 from a Caregivers’ Perspective

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Written by the CanFASD Family Advisory Committee

We are finally confident that people will understand what we mean when we say life is unpredictable and sometimes feels like it is spiralling out of control. It took a pandemic to have others experience what our lives are like routinely.

At a recent CanFASD Family Advisory Committee meeting, we took the opportunity to check in on everyone to find out how the strategies being implemented by the provinces and territories to “flatten the COVID-19 curve” have affected our families and us. The results were not that surprising. 

Normal stressors were accentuated. Some of our children’s not so positive coping strategies were exercised regularly. Those of us who are not only caregivers, but also service providers or involved in Non-Governmental Organizations (NGOs), were incredibly busy.  

For this blog, we share the challenges caregivers of individuals with FASD face during a pandemic. These issues are from our experience, both personal and from individuals we support in the community. They may not be reflective of all caregivers.

In terms of the less than positive coping strategies, food management has become a significant issue. Grocery bills have increased even as shortages have occurred. It is unclear if this change is a result of emotional eating, food hoarding, lack of structure, or boredom, but the kids are eating us out of house and home.

Individuals with FASD can have extreme reactions to the pandemic ranging from not understanding social distancing and hygiene measures put in place, to being afraid to go outside and even feeling that there is “no point to do anything as we are all going to die anyway”. This perceived lack of safety has a significant impact on individuals and families as it increases general anxiety and tests already challenged coping strategies. It is not only the children who may be experiencing extreme reactions. We are aware that some caregivers have difficulty teaching and enforcing safety procedures, such as hand washing and physical distancing. Others are afraid to let their children go outside at all. It can be challenging to teach abstract concepts like viral loads to help reinforce the need for healthy practices. Even the concept of “social or physical distancing” can be hard to understand without concrete visual cues. A great example of making the abstract concrete is the physical distancing cues used by the Fetal Alcohol Syndrome Society Yukon (FASSY).

Lack of respite and services for our families is a major issue as most professional services and NGO’s shut down for the pandemic. This lack of support becomes particularly problematic when working parents with children who are affected are required to work from home. The demand on us as caregivers without any external supports is a significant concern. 

NGOs are important in providing a social safety net, particularly with other services being closed or restricted. For those of us working full-time during the pandemic, we have found ourselves working more than full time with the challenges of trying to develop new strategies to work from home. Adding on the challenges of supervising children, addressing their emotional needs, and being their teacher is overwhelming. Not all parents have the capacity to provide the information, structure, educational support, and social support that our children need. For those of us working in NGOs, the demands for supports and services have increased exponentially as ours are some of the few services still available for families. Most of us are relying on social media and virtual communication to stay connected during these times. Social media, however, is not always a helpful, appropriate, or safe way for our children to connect to others. How do we keep them safe and connected at the same time?

We know that enforced isolation will bring about a variety of mental health issues in the general population, but this isolation may have a long-term impact on individuals with FASD. We already know that many individuals with FASD experience issues with mental health; isolation and lack of services and supports will not help.  

In terms of caregiver mental health, we have significant concerns about increased anxiety, fear, and guilt. It seems like we can never do enough, be enough, support enough, let alone take time for ourselves. There is a general sense of sadness as well, almost as if past losses and historic grief find new traction in our current lives.

And what happens when things go back to our “new normal”? We anticipate challenges in terms of re-connection when isolation orders are lifted. For example, when individuals with FASD are off of their routine and are getting used to a lack of activities, their ability to return to a routine will be challenging. Also, many of the jobs and supports that were available for individuals with FASD may not exist when many small businesses close.  

We anticipate difficulties with our kids reconnecting in school. Not all caregivers have the skills and time necessary to home school and we think that the disparity in educational progress will be an issue when schools open, particularly with lower income, marginalized families. Kids with FASD who struggle with academics generally may find themselves well behind their classmates when they return to school.

However, there are positive experiences, too.  

We are connecting with families and friends in new ways. Surprisingly, there is, in some cases, increased family connections through social media platforms. There are several FASD support groups available on Facebook, for example, that can help families feel less isolated and alone. In many regions, family support groups are continuing to meet virtually providing much-needed opportunities to decompress and share strategies and encouragement through these challenging times.  

Training opportunities have been expanded. More training is available online or through virtual platforms now, which will aid in developing awareness and hopefully will lead to better supports for our children. CanFASD has provided online training for the general public (Foundations in FASD), as well as more advanced and specific online training for educatorsjudicial and legal professionals, and solicitor general professionals.  

There have been recent podcasts focusing on common issues for individuals with FASD and FASD success stories to help provide strategies and instill a sense of hope, like those available on the FASD success show

This is a time that demands creativity and thinking outside of the box. Our children have taught us this need throughout their lives. They have taught us how to be strong, to be loving, to be creative, and to not dwell in the past but to move forward with confidence, even though that may not be justified. These teachings hold us strong during these times. To them, we are grateful.

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