The COVID-19 pandemic has many families on edge right now. Jobs are being cut, routines are disrupted, and with social distancing requirements in place in most parts of the country, parents are juggling the demands of working at home with keeping their children healthy, happy and occupied with constructive activities, including online learning.
Families in the bleeding disorders community are dealing with all of these new stressors, of course, but that’s on top of the unique everyday challenges that come with managing a bleeding disorder.
“Living with a bleeding disorder or parenting a child with a bleeding disorder can be very stressful anyway, but adding a worldwide pandemic just magnifies this stress,” says Robert Louden, MSW, LCSW, a social worker at Indiana Hemophilia & Thrombosis Center in Indianapolis.
What can you do to help nurture and protect your child’s emotional well-being during times of crisis? Here’s what Louden and his fellow Indiana Hemophilia & Thrombosis Center social workers Gail Jordan, MSW, LCSW; DeAuntae Lawson, MSW, LSW; and Ashley Parmerlee, MSW, LCSW, recommend:
Keep your normal routines
Kids thrive on structure, so as much as possible stick to your normal household routines, including regular bedtimes, meals, chores, etc. That consistency helps kids, especially younger ones, feel calm and secure.
Be honest but reassuring
Talk to your children about what’s going on, but in a way that doesn’t induce or raise their anxiety. You want to create an environment where children feel comfortable expressing their concerns and asking questions, and where you can address any misconceptions they may have.
Check in with your children frequently to assess their current understanding and stress surrounding the crisis. Be on the lookout for signs of anxiety and depression, including changes in appetite, sleep disruptions, aggression, irritability, and fears of being alone or withdrawn.
Take care of your own physical and mental health
As parents, you should be modeling how to cope with stressful situations in positive ways by maintaining healthy habits, including exercise, adequate sleep and establishing some alone time, when possible.
Remind your children that being homebound is temporary, and that even in trying times, you can always find reasons to be grateful.
“While this is a time of uncertainty, it is also a time to be thankful for those around us,” Louden says. “It gives us the ability to appreciate how precious time is, and how we can use these extra moments in a productive way.”
On a practical level, the slower pace at home can make the home infusion process calmer and easier to schedule. “It may also enable kids to be more hands-on in the process, and possibly allow adolescents to take on a more independent role,” Louden says.
Keep in touch with your HTC
If you have any questions or concerns, contact your local hemophilia treatment center (HTC). The social workers are there to help.
Says Louden: “Everyone is feeling very uncertain about everything going on, so we are trying to be as available as possible and well versed in all resources that could benefit our patients so that we can point them in the right direction when they need it.”