Kyle (not his real name) is a delightful, and very social, 9-year-old boy with PWS and related conditions – including hypothyroidism, obstructive sleep apnea, morbid obesity and albinism – who is in need of a loving foster family. He currently resides in a group setting outside of Philadelphia, PA where, with the benefit of structure, close supervision and very restricted access to food, he is doing well and losing weight.
While he will take food when the opportunity presents itself or engage in skin picking, at his current placement these behaviors have been infrequent. Kyle benefits from behavioral health treatment at his placement and enjoys participating in this. At times, Kyle struggles with following directions and may get upset when he does not get his way and has difficulty making choices. Many of Kyle’s behaviors can be attributed to his PWS diagnosis. But Kyle is also a very active and inquisitive child who enjoys reading and being read to, watching scary movies, singing in sing-a-longs, going for walks and swimming.
He attends the local public school where he is in a special education classroom. Kyle’s teacher reports that she is pleased with his behavior, as well as his academic progress. Because food is inaccessible to Kyle in this setting, his teacher reports no problems in this regard.
A foster family with experience caring for individuals with PWS is being sought for Kyle. If you are interested in learning more about Kyle – who has a great personality and enjoys talking to people and interacting with his peers – please contact his child advocate attorney Shannon Sherwood at ssherwood@sccalaw.org or his child advocate social worker Cathy Behar at cbehar@sccalaw.org.
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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.