Contributed by Anne Fricke, mom to Freya (living with PWS)
What Does Self-Care Look Like for You?
For some, self-care is regular massage appointments and weekend getaways. Others sign up for dance classes, spend hours on a golf course, or go out for fancy dinners and nights on the town. These are all great ways to practice self-care, but they also require money and childcare - a limitation for some. This can be especially true for families of kids with PWS since supervision is such an essential part of maintaining safety. Thankfully, self-care can be free and relatively effortless.
A Simple Self-Care Routine for Caregivers
During the pandemic, I learned to wake up early, long before anyone in the house stirred. With everyone in the house, all together at the same time, day in and day out, I quickly recognized the need to carve out that time for myself. If I didn’t, the rest of my day was a bit rough. My timing was off, my patience thinned, and my nerve endings were raw and tender. It was a challenging habit to begin, but once there, I came to cherish and require those quiet, dark mornings in front of the wood stove with my coffee and journal. That space and time set the stage for my ability to be present and calm throughout the rest of the day.
I have carried this habit with me. It is the most significant act of self-care I do for myself. I wake up at least an hour, often two, before my children and spend that time as needed. It looks different, according to my needs, but one rule is consistent: I stay off social media. I may spend the time exercising, writing in my journal, talking on the phone with an old friend, or snuggling on the couch with my dogs and a book. The flexibility works for me; I need to be assured of the time to be just that.
Use Your Time Wisely
Of course, not everyone is a morning person. Staying up late to get those precious quiet moments works better for some people. The hours at the end of the day are prime for reflection and creativity. It is the suggested time to write in a gratitude journal, reflecting on three things from the day that made you happy or grateful. A long soak in a bath, sitting by a backyard fire, or watching an anticipated movie can help you relax and start filling that cup again.
Why Is It Important?
The health and well-being of caregivers matter! Parents are caregivers by nature, often sacrificing needs to meet those of their children. Parents of children with special needs or disabilities often sacrifice more than they may have to give. It is crucial for your health and well-being, and that of your family, to find ways to care for yourself.
The beauty of self-care is that it does not have to look like one thing. Cater your self-care to you and your needs. How can you take care of yourself each day? What kind of movement can you do? Who is a good support person for you to talk with? What activity, or non-activity, helps you take a break from worrying, even for a little bit? Do you have a creative outlet or a project that brings you joy and satisfaction? When do you take a moment to breathe?
National Family Caregivers Month
November is National Family Caregivers Month. The month may be ending, but supporting caregivers never should. Let this post be a reminder of the importance of self-care and the encouragement to seek it out. For ideas on bringing more self-care into your life and information on how important it is, please check out this blog: Self-Care for Caregivers
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Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.