How to Shelter in Place with a Child with Special Needs
5 steps for staying sane during challenging times with challenged kids.
Posted May 01, 2020
I am pleased to welcome Shay Beider, MPH, as my guest blogger for this article on parenting children with special needs during the lockdown. Ms. Beider is the Executive Director of Integrative Touch for Kids. Today she offers useful tips for caregivers.
Families around the world continue to shelter in place, working from home while trying to keep their lives as normal as possible. But weeks of staying inside doesn’t mean the process has gotten easier, with many struggling to keep their heads above water. On top of that, parents have the difficult task of balancing childcare and homeschooling—and if you’re caring for a child with special medical needs, you face another set of challenges altogether.
Nearly one in five households has a child with a special medical need. This includes kids with chronic, acute, and life-limiting illnesses—things like cancers, autism, genetic conditions, and those who have visual and auditory differences or have suffered severe traumas. For instance, children with autism may have difficulty sitting still and need more physical movement. Those with sensory impairments may have a difficult time interfacing with tools like Google Classroom and Zoom. And it can be particularly hard for kids undergoing cancer treatment who simply don’t have the energy to show up and be present for online classes.
In the midst of all of this, parents and other caregivers need to take care of themselves so they can take care of their children. Here are five ways people with kids with special needs can refocus their efforts to cope and stay balanced through COVID-19:
Establish a Self-Care Routine
It is essential to prioritize your core self-care practices. This can include things like movement, meditation, and creative expression. Try to keep your important social connections alive and make time for fun. If you need a boost in this department, many companies are offering free wellness resources on their websites and social media channels. These include inspiring online talks, self-care tips such as breathing techniques and even dance classes to help motivate you throughout the day.
Define and Schedule Your Roles
Keep in mind you are playing multiple roles—parent or caregiver, friend, and teacher. It can help to play each role at different times and during defined blocks of time. This structure will reinforce routines and provide comfort to your child. One part of the day can be dedicated to school, while another is only for play or family time. No one can do it all, so be especially kind to yourself and practice self-compassion. You are doing an amazing job by attempting to wear so many different hats!
Develop a Plan with Other Adults in Your Household
Different states are floating potential dates for restrictions to lift, but for now, sheltering in place continues in some form in most states. Rather than being discouraged, now is the time to stick together. It can be helpful to maintain a strategy for the remaining time in quarantine. If you have other adults in your household, work on a plan for tag-teaming. Be sure to take turns and give each other a break. Create opportunities where you each get to be alone, and where you don’t have to be "on" for anyone else.
Draw Upon Your Friends and Family—Remotely
One way to look at this new normal is that you have an opportunity to call on family and friend networks remotely to help you through this challenging time. Maybe you have a friend who plays the guitar or piano. They could set up a Skype or FaceTime session with your child for an entertainment break. Call on a relative who loves to sing, cook, or do crafts when you need a quick moment to yourself. These types of fun virtual projects can support you while expanding your child’s worldview.
Journal to Process Your Feelings and Experiences
When we feel stressed, it is important to express our emotions. Journaling can be a wonderful tool. A helpful strategy is to spend a couple of minutes writing whatever is on your mind before shifting to write five things you are grateful for in the last 24 hours. Research from Emmons and McCullough shows that writing down things for which you are grateful can improve emotional and physical well-being. It can also help you to attain your personal goals!
COVID-19 has brought significant challenges to families and caregivers. There will continue to be peaks and valleys during the days ahead—particularly when you are caring for a child with special health and medical needs. As author Glennon Doyle Melton shared, “A good day is a good day, a bad day is a good story.” Let that be some consolation for the balancing act you are working to maintain. We are all sharing a unique historical moment together and no one has all the answers on this new frontier. Be kind to yourself and others and hold on to the deepest part of you that remembers how much you love the ones you are with and that you are doing your very best to make each day a good day. Or, at least a good story.
© 2020 Shay Beider. All rights reserved.
Shay Beider is the founder and Executive Director of Integrative Touch for Kids, a non-profit organization that enhances well-being, minimizes suffering and facilitates healing for children with special medical needs and their families.
Further reading on coping during the coronavirus pandemic:
Sherry Hamby, Ph.D., is a Research Professor at the University of the South and the Director of the Life Paths Research Center.