Parenting in a Pandemic: Fathering and Co-Caregiving Children with Disabilities During COVID-19

Nothing really prepares you entirely for being a father, let alone a father of a child with a disability.

I can still remember the first time our son had a grand mal seizure and was helicoptered to a regional hospital intensive care unit for life saving, and tests. That was a traumatic day! It turned out that he has a very rare genetic disorder that will require full-time care his entire life. He is simultaneously our greatest joy and challenge every day! As fathers, we often share caregiving with other significant people in our lives; this support is truly invaluable. All types of caring fathers from a diversity of backgrounds are so important to the lives of their children. Caregivers of children with disabilities[1] are such an inspiration to me, particularly in a pandemic.

It really is true, that it takes a “village” to raise a child, particularly a child with disabilities.

As a father, I have been in a new phase this last year with COVID-19, much like all parents. Co-parenting a child with a disability during these very anxious, unstable, and unprecedented pandemic times has been very hard. Unfortunately, during COVID-19 parenting a child with a disability has been particularly lonely and isolating, as the “village” has dramatically shrunken due to pandemic restrictions. With the cancellation of social visits, gyms, activities, clubs, play dates and an increase in remote school learning; this has been a traumatic change. As fathers, the activities that were the staple of our relationships with our children with disabilities have vanished instantly with no time to prepare replacement possibilities, and no end in sight.

It is estimated that over one third of Canadian families have reported feeling extremely anxious about family stress as a result of COVID-19 related confinement[2]. The wellbeing of parents has been found to affect family functioning through changes to the marital, sibling, and parent-child relationship. As such, understanding the impact of the COVID19 pandemic on fathers raising children with disabilities may shed light onto the overall functioning and welfare of the rest the family system. My graduate students and I have been conducting two research studies this last year about the experiences of parenting and co-parenting children and young adults with autism, particularly noting how these dynamics have been affected by COVID-19. For this blog, we will focus on the preliminary learnings from these studies about co-parenting, with an emphasis on fathers. We will also share some practical suggestions for caregivers of children with disabilities on how to hold on to hope during these challenging pandemic times.

Study 1. Since the pandemic, in person schooling and therapies are not always available. The responsibility of providing autistic children quality education and behaviour therapies is now mostly on their caregivers. This study examined the experiences of co-parents raising a child with autism during the COVID-19 pandemic. We asked caregivers how they felt the pandemic has affected their co-parenting relationship and the impact this has had on their individual caregiving experience.

Preliminary results include:

• Impact on Caregivers: Parents expressed confinement related stressors caused by changes to their daily structure and routine. In addition to financial stressors and renegotiating their typical roles and responsibilities of providing childcare while working from home. Caregivers noted increased stress regarding their children not being able to access therapy and seeing a regression in children’s behaviours and development as a result.
• Impact on co-parenting relationship: it is difficult for caregivers to find time to connect romantically or relax when working from home, ensuring their child receives proper online education and tending to the housework. The participants who identified as Father’s noted that while it’s been amazing to spend more time with their kids, it is extremely challenging to maintain the original relationship spark when both parties are constantly stressed.
• Impact on children: Caregivers noted a decline in their child’s behaviours as a result of not having the structure and routine they were used to. Their children are unable to socialize, attend therapies and extracurriculars. It was expressed that online education may be challenging for some autistic children, resulting in the caregivers having to provide the home-schooling themselves while working from home and caring for other children as well.

Study 2. We know that autism doesn’t end at 18; however, research often misses the stage where children transition into young adults. This age group can be referred to as transitional age youth (16-24). Much like autism presents differently in each case, the dynamics of co-parenting/co-caregiving a young adult with autism can also be unique. Parents, including fathers, of young adults with autism completed open-ended surveys and follow up semi-structured interviews to explore their co-parenting and parent-child relationships, as well as their mental health prior to, and during the COVID pandemic.

Preliminary results of the co-parenting aspect of this research indicates:

• Many co-parenting relationships have been strained during the pandemic, with an increase in parental bickering. Challenging behaviours exhibited by the autistic young adult seem to contribute to parental tension, while shared values, communication, and teamwork between co-parents seem to yield more positive impressions of the co-parenting relationship.
• Father’s tend to occupy a different role than do mothers, with some fathers describing their relationship with their autistic young adult as more casual, like that of a friend/companion.  The primary caregiving generally was provided by the mother in most married/cohabitating families, with fathers providing emotional, financial, and practical support such as assisting with household chores, or educational support.
• Restrictions on services and professional organizations due to COVID (e.g., respite, team sports) have negatively affected fathers, as this has reduced opportunities for their own self-care and caregiving supports. Young adults with autism have also not been able to practice their social and life skills due to restrictions on services; some parents have expressed concern about lost skill development during this uncertain time.

These two studies indicate that the pandemic has been difficult on the co-parenting and parent-child relationships. Increased tension, child behaviours, and limited (or non-existent) opportunities for self-care and support have had a negative impact on fathers and co-caregivers of children with disabilities. Despite the challenges of the pandemic, some families have adopted a variety of effective strategies to support themselves and their children; we have provided a list of these suggested strategies below.

Caregivers of children with disabilities display remarkable acts of resilience every day!

Suggestions:

The social, economic and mental health challenges for fathers raising children with disabilities during the COVID-19 pandemic is largely unknown. The evidence discussed sheds light to the crucial need for familial intervention for caregivers, and specifically those raising children with additional needs.

• Access the services available. There are now free services available for families of children with disabilities such as telehealth for non-urgent health concerns.
• Attune to your child’s feelings. Address your children’s fears by recognizing and validating their feelings, model management of scary feelings, maintain healthy routines, and be kind and patient with your child’s behaviours. 
• Engage in self-care. Having an outlet for parents to take care of themselves and get a break from their role-strain is important. Social support (e.g., talking to a friend), exercise, and respite can all be helpful strategies, fill your own glass first.
• Increase communication. Parents who reported having open communication with their co-parent related to decision making, emotions, and their child’s needs were more likely to describe their co-parenting relationship with positive characteristics.
• Continue to offer professional services for autistic individuals. A particular note of engaging more men in the field was noted as a significant gap that could help with role modeling, as the majority of autistic individuals are male. Online service engagement can also help fathers stay connected to and feel validated by other parents with autistic young adults

Parenting Resources:

• https://www.covid19parenting.com/assets/resources/psas/USAID-Sound-Bite-English.pdf
• https://www.canada.ca/en/public-health/services/publications/diseases-conditions/parenting-during-covid-19.htm
• https://kidshealth.org/en/parents/coronavirus-autism.html

References: