Receiving a diagnosis of Prader-Willi syndrome can feel isolating and overwhelming. Many of us are thrust into a world we never knew existed. From the start, we are met with statistics and information about genetics, therapies, medications, specialists, nutrition, and futures that seem unfathomable. The tumultuous emotions that accompany this time will likely get shoved down or pushed aside to make room for the details that need immediate attention. There is little time or space to process our emotions. Research has shown that inhibiting the release of emotions has a negative effect on many aspects of our well-being. Taking care of your emotional needs is critical to this parenting journey. To this end, journaling is a very effective yet simple tool.
What are the benefits of journaling?
Journaling offers a space to sit with emotions. When we write our feelings onto the page, they become tangible. We can then work towards recognition, clarity, and solutions, making room for resilience and acceptance.A dedicated, thoughtful journaling practice can help a person regulate their emotions, reduce stress, nurture resilience, gain more emotional intelligence and perspective, find empowerment and solutions in their situation, improve memory, identify and achieve goals, and come to a place of gratitude. It also has positive physical benefits like strengthening the immune system, lowering blood pressure, and helping you sleep better.Under professional guidance, journaling can support healing in trauma, chronic illness, addiction and substance abuse, PTSD, and eating disorders. When used thoughtfully and intentionally on your own, it can help with grief, mild cases of anxiety and depression, and for an overall improvement in how you relate to the struggles and challenges of this life.
Stress management
Parenting alone is stressful, but add to that the necessity of learning a whole new way of living, from doctors and therapists, insurance paperwork, and medical arenas to the day-to-day stresses of relationships, peer interactions, medications, behavior, and schedule adjustments, stress can come to be a regular part of the journey. It is critical to address this.Journaling is a fantastic tool for managing stress by identifying stressors in your life. Part of dealing with an issue is truly understanding what you are battling. Journaling enables people to see patterns in their behaviors and responses to certain stimuli. It helps prioritize fears, worries, and problems so they can then be faced and further understood.We may become overwhelmed with the details of PWS and the approaches to treatment. Keeping notes about what you have learned and experienced, what treatments, supplements, and therapies were beneficial, what approaches sound promising, and what happens at doctor appointments can help significantly. Keeping this information in a designated journal can help bring a sense of order to a potentially chaotic life.
Anxiety
Unresolved stress can lead to anxiety and depression, which can, of course, lead to even more stress. Seeing our fears and worries on paper can help us determine the actual concerns and find solutions to help us work through these concerns. It can be a way for us to identify what is causing anxiety.I suffered from anxiety at the beginning of my journey with PWS. I had never heard of the syndrome before. The information was vast and scary, and the path to a more manageable future was flooded with various supplements, therapies, behaviors, and medications. I had a lot of self-criticism and fear of not making the right choices or working hard enough to find solutions. I was overwhelmed with decisions and potentialities and a drive to make sure that my daughter wasn’t going to suffer the way they told me she could.The reality is we will spend time ruminating on fears and concerns. We can decide whether it’s in a controlled, healthy outlet like journaling or at 3 in the morning when you can’t sleep because of the spiraling thoughts in your mind. For many people, the best way to quiet and address those fears with clarity is to allow them to come out through writing.
Depression
When faced with adversity or overwhelming situations, it is the natural inclination of some to draw in upon themselves and isolate. Isolation can be very harmful to the human psyche. It is essential, especially if we are to be helpful caretakers, to express the emotions causing us to close in and find a way up and out of that isolation.Journaling can also help you learn to push through to positivity on your own. Or you may find that you need support in doing so. Either way, expressing your feelings about your situation helps you understand where you need assistance and how to get it. With journaling, you can learn to reframe your narrative from one of self-defeat to one involving purposeful observation and optimism.
Grief
When grief comes into our lives, whether through the loss of a loved one or the loss of our envisioned future with our child, this grief must have a way to be expressed. When we ignore and bottle up our emotions inside, they can take root and fester, only to arise at inopportune times or in ways that become much larger than we may be able to handle. Writing about grief helps us express those feelings and gain an awareness and insight into the loss. It can help reorient us in a world that has been forever changed by the cause of grief.
How To Journal Effectively
One of the many advantages of journaling is that it doesn’t require anything beyond pen and paper and a space free of distraction. For some, that may be a coffee shop with light background noise, a softly lit living room free of clutter, or a bathroom rug on the children-free side of a locked door. The point is to create or find a space where you can take the time to write without distraction.Be sure to give yourself ten or fifteen minutes at least to write. Include some time afterward for reflection and balancing if the experience brought up intense emotions. Write as consistently as you can. A popular metaphor is that writing is a muscle that can be trained.When you put your pen to paper, let only honesty come out. Without honesty, there is little insight to gain.Don’t edit as you write. Grammar is irrelevant to journaling.As you write, try to notice patterns in thoughts or behavior. Understand the links between these and life events. Use the word “because” to help you.Perhaps most importantly, aim for growth and understanding. Find the lessons in what you write. Make the necessary connections, notice triggers, lean into the places that need to be heard, and celebrate where you can feel gratitude.An important thing to remember is to not wallow in your negative thoughts or use journaling as a way to become self-obsessed or repeatedly self-blame.
The Takeaway
Journaling allows us to explore our emotions and experiences, helps us to understand ourselves better, identify stressors, and gain insight into the necessary details of our lives. When we gain insight into the what and why of our emotions, we can then begin the process of understanding how to move through them and bring more positive experiences and behaviors into our lives.
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If you are inspired to learn more about Journal Therapy, please watch our Facebook Live recording with PWS mom Anne Fricke at this link: Journal Therapy
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.