My loved one with PWS is having a behavior outburst, tantrum or meltdown. What can I do?
Being prepared and working with the individual with PWS to understand a triggering situation while helping them manage their anxiety can make difficult situation much easier to handle.
- Use a calm tone of voice. Yelling or showing negative emotion will likely increase your loved one’s anxiety and escalate an outburst.
- Remain empathetic. Shame, judgment, and guilt will only add to negative feelings. Likewise, threats and bribery won’t work and instead just exasperate the situation. Remain calm and offer reassurance as your loved one begins to decompress.
- Be supportive while trying to understand where the stress is coming from.
- Your loved one with PWS iknows he or she is not in control during an outburst. He or she will be counting on you to be their “rock” who can help them feel safe.
- Talking too much can cause additional confusion and anxiety for your loved one. If a situation seems to be escalating, try being a silent presence.
- In addition to being silent, you can try reducing external stimulation by going to a calm quiet place.
- Remind your loved one of their coping skills and help them use those skills. For example, if your loved one has been taught to use controlled breathing to relax, remind him or her to take deep breaths (and breathe along with them).
- Calmly wait for your loved one to return to baseline. Rushing this process will only make the situation worse.
- Whatever you do, don’t give in to the outburst or tantrum. Doing so only reinforces the behavior and can make the next tantrum even worse. Instead, reinforce the use of positive coping skills by acknowledging positive behavior. For example, try saying something like, “You did a nice job using your breathing to calm down. I am very proud of you for using your coping skills.”
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.