Contributed by PWSA | USA Alterman Family Support Counselor Kim Tula, MS, CSW
Grief is the response to loss, particularly to the loss of someone or some living thing that has died, to which a bond or affection was formed. But what about the feelings of loss associated with living with PWS? Is this a grief individuals feel when they are faced with a loss of freedom or independence? Is it grief individuals experience when they can’t reach their personal goals, when they can’t have a family of their own, or when they can’t own and drive a car? Yes. These are all examples of disenfranchised grief.
Disenfranchised grief is grief experienced when a loss occurs that is not openly acknowledged, publicly mourned, or socially supported. Any loss one experiences that is not commonly experienced by others can lead to disenfranchised grief.
It is not uncommon for people with PWS to experience grief throughout different stages of their life. PWSA | USA offers support to those experiencing disenfranchised grief. Over the past few months, we have provided support to numerous individuals with PWS, between the ages of 8- and 50-years-old, who are working through disenfranchised grief. If your loved one is experience a sense of loss or you believe they could use additional support related to PWS, please contact one of the family support counselors at 941-312-0400.
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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.