Contributed by Anne Fricke, mom to Freya, living with PWS
Freya’s 6th grade class started the year studying volcanoes. Part of the learning experience was to travel to Lassen Volcanic National Park for a 5-day camping trip with arduous hikes and days full of activity. To say I had concerns is an understatement, but she was determined, and I would be with her the whole way.
The first hike of our trip was to the top of Mount Lassen, a 10,457-foot volcano. The hike was a 2 1/2 mile switchback to the top with about a 2,000-foot elevation gain.
Freya and I walked mostly on our own. We would catch up with a different crew at times, surpassing them and being surpassed, but most of the class made it to the top within an hour and a half. We took necessary breaks, where I pushed water and encouraged her to wait for a few more switchbacks before having another snack. We reminded each other to breathe through our noses and just keep putting one foot in front of the other.
Two and a half hours after stepping onto the trail, Freya walked up to the summit to the cheers and hugs of her classmates! If I hadn’t been so exhausted, I would have cried. We checked out the view, ate lunch, and hung out with her class atop a volcano. That was Tuesday.
Wednesday, we took another couple-mile hike into the geothermal area of the park. Thursday, Freya climbed up and down into a 700-foot volcano called Cinder Cone. The path is like walking on sand…two steps forward, slide one step back. She went up without me, supported by the other chaperones, while I sat back with the few students too tired to climb this one. Friday, we hiked through the tunnels of Shasta Caverns. I’m only listing the main hikes we did. There were several smaller side hikes to various places, all of which Freya participated in.
Back at school, the principal stopped me in the hallway to share her excitement for Freya’s achievement. She asked how Freya had reacted when she reached the top of the volcano. I had an inspiring realization as I told her about Freya’s reaction. Freya was thrilled and excited to make it up Mount Lassen. But she wasn’t surprised. She had never doubted that she would make it to the top.
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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.