Question:
Female, 5, Deletion:
What temps would you write in an IEP for kids to stay indoors? Example below 40 and higher than 80? What wording would you recommend?
Nurse Lynn’s Response:
The degree and severity of temperature abnormalities can vary from person to person. In short, I wouldn’t write down exact temperatures.
I would use the IEP to educate about the temperature irregularities typical in PWS because of the “flawed “hypothalamus. Ensure the school has what they need for your child, like extra mittens, hats, scarves (I live in Minnesota), cooling towels, etc., for the warmer weather. Give examples of what it may look like when your child gets overheated or too cold. Limit the amount of time outdoors during hot/humid temperatures.
Below are two very helpful links that you can include with the IEP and give to the school staff.
https://www.pwsausa.org/wp-content/uploads/2022/08/HealthConcernsStudent-revisedAug22.pdf
https://www.pwsausa.org/wp-content/uploads/2022/08/Medical-Overview-for-School-Nurses-2.pdf
Don’t forget our https://www.pwsausa.org/schoolsuccess/ Tips for School Success page. It has all sorts of great things for you and the school.
Do you have a question for Nurse Lynn? Submit your question here.
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.