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 canโt reach their personal goals, when they canโt have a family of their own, or when they canโt 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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Perry A. Zirkel has written more than 1,500 publications on variousย aspects of school law, with an emphasis on legal issues in special education.ย He writes a regular column for NAESPโsย Principalย magazine and NASPโsย Communiquรฉย newsletter, and he did so previously forย Phi Delta Kappanย andย Teaching Exceptional Children.
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.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Childrenโs Institute of Pittsburgh. She graduated fromย Duquesne University receiving her Bachelorโs and Masterโs degree in Education with a focus on elementary education, special education, and language arts.
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.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Programย (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Childrenโs Hospital in Denverย supporting families and school districts around the United Statesย with their childโs 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.