If you have a loved one who has Prader-Willi syndrome (PWS), you have no doubt tried some sort of teletherapy due to the Coronavirus pandemic. While some individuals have taken easily to this new way of interacting, many are finding it difficult. If your loved one falls in the latter category, a few suggestions are included below that might make their virtual experience (and yours!) more successful.
Make it fun! When starting teletherapy, the goal should be to teach the individual with PWS that teletherapy is fun! When something is fun, a person will be more likely to put forth their best effort. Initial sessions may look more like “play” than “work,” and that is ok. Over time, more “work” can be introduced. When an individual has the past experience of being successful, that person will be more likely to comply with difficult tasks when presented. Initial sessions can consist of the individual and the therapist engaging in the individual’s favorite game, listening to preferred music, or telling jokes – whatever is enjoyable to the individual. As a parent or caregiver, it may be frustrating to watch your child “play” when they should be working on much needed skills, but the long-term benefit of this strategy will outweigh those few frustrating sessions.
Value quality over quantity. The quality of the session is more important than the duration. If your loved one is having a difficult time with teletherapy, talk to the treating therapist about possibility of decreasing the length of the treatment sessions.
Incorporate positive reinforcement. Even if your loved one participated in in-person therapy without any formal reinforcement system in the past, adding this to their teletherapy sessions may prove beneficial. The individual can earn tokens or points or stars (or whatever works!) and trade them in for breaks throughout the session. The therapist can do this on the screen or a caregiver who is present with the individual can deliver the reinforcer when directed by the therapist. Just make sure that the expected behaviors that will result in token delivery are explained as clearly as possible before starting. Use the individual’s unique preferences to design the reinforcement system. Adjusting to teletherapy is hard, so adding in a positive reinforcement system does not mean that the individual is “going backwards.” Rather, the individual is working on acquiring multiple skills at once – adjusting to teletherapy AND completing the required work from the therapist. We all need a little extra motivation when things are hard or different!
Make things predictable. It may be best if the therapist chooses a format for the session and follows that format each time. Using a written schedule for the session that can be checked off or erased as tasks are completed is a great tool. If the individual understands time, a timer can be used to show the individual how much time is left.
Think carefully when scheduling. It probably is best to schedule a teletherapy session at a time when the individual can have a preferred break immediately before and after the session. It also is advisable to avoid meal times (unless the meal can be eaten during the session) or times of day when the individual may be extra tired.
Log on early! Set your alarm so you log onto the session a few minutes early. This will help you start on time if you run into issues when connecting.
Allow choice. As much as possible, give your loved one choices. Maybe your loved one can choose between sitting in the kitchen chair or the extra comfy desk chair. Make the choices as silly as possible, if you think that will help. You control the options and they control the choice!
Remember: You are not alone! If you and/or your loved one is frustrated with teletherapy, reach out to others who might understand. I can almost guarantee you will find another caregiver who is having a similar experience. Just talking to someone else who “gets it,” even if the problem can’t be fixed, can be instrumental in decreasing stress associated with the situation.
Contributed by Cindy Szapacs, M.Ed., BCBA.
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.