Book reviewed by Lisa Graziano, M.A., LMFT, PWS parent and long–time advocate
Forces of Nature: A Memoir of Family, Loss, and Finding Home
Written by Gina DeMillo Wagner
I recently stumbled across this book and purchased it after learning it was written by a woman whose
brother had Prader–Willi syndrome. Amazon’s description reads, “Gina DeMillo Wagner’s brother Alan had a rare genetic disorder that caused him to veer from loving to violent. When Alan died suddenly, Gina was pulled away from the safety of her adult life and thrust back into a family she has been estranged from for nearly ten years. FORCES OF NATURE follows this rewinding of the past, Gina’s caregiving journey and reckoning with complicated grief, plus Alan’s Christmas–themed funeral, and an investigation into his cause of death. It’s a personal story that asks universal questions: How much of ourselves should we sacrifice to those we love? And, what forces shape our sense of family and home?”
I found the book a quick, well–written read. The author candidly describes her conflicted relationship with her brother, her love for him amidst her fear of his sometimes quite violent behavioral outbursts. While her feelings for her brother are ambivalent, her feelings toward her mother are absolute. She describes her mother as singularly and hypochondriacally focused on the health of her son with PWS to the exclusion of apparent caring for her other two children, including the author.
This book is not for the parent of the young child with PWS.
The ideal audience for this book is the adult who has grown up with a sibling with PWS, especially one whose symptoms include(d) physical aggression. Parents may gain insight into their other children’s experiences with their sibling with PWS and be reminded of the need to be present for each of our children and protect them, including, if necessary, from their sibling with PWS. Professionals who wish to gain some insight into the experiences of those who live with a sibling with PWS who has aggressive behaviors may also find the book helpful.
While Forces of Nature is but one woman’s account of her dysfunctional family dynamics, it provides a
glimpse into the complexity that PWS injects into the family system, offers opportunity for family members to recognize similar experiences, and potentially feel validation of unrecognized or unexpressed feelings.
Buy the Book
Paperback: Forces of Nature | Independent Publishers Group (ipgbook.com)
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.