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.