COVID-19 has turned all of our lives upside down. These times can be particularly challenging for our loved ones with PWS who rely on routines and schedules. In this webinar, Elizabeth Roof, Senior Research Specialist at Vanderbilt Research Center, shares strategies to manage repetitive behaviors and questions, as well as tips to help motivate your loved one to participate in activities such as at home learning and exercise. Elizabeth has kindly shared the slides from her presentation. Download the slides here.
Presentation Outline:
The Age Old Question - Which Came First, the Chicken or the Egg
- Repetitive behaviors are often related to anxiety
- People who are anxious are highly intolerant of uncertainty
- People may experience high level of discomfort in ambiguous or unclear situations
- This can lead to repetitive behaviors which can lead to temporary relief, but can also increase to get the same feeling-compulsion
- Compulsions like scratching a mosquito bite, can relieve the feeling, but then the need to keep doing it kicks in and then it is hard to stop.
Anxiety in PWS
- Could look like worry
- Constant need for reassurance
- Need to control situations/people
- Initial push back in new situations
- Questions about schedules/expectations
- Transitions are very hard
Self-Soothing Vs. Repetitive Behavior
- Distinguish the two- self soothing (tearing paper) leads to more calm while repetitive behavior when related to anxiety means that the behavior itself can be hard to stop- like questions.
- Build self soothing into the day
- Determine a schedule (your child can help make it) and then follow it- build in breaks!! Or it is gonna break you!!
- Build in some chance- (spinner) so your child can start to tolerate uncertainty.
- Build in movement/deep breathing breaks- they should be fun!!
Some Strategies
- Limit questions to 3
- Allow them to teach you a skill/subject
- Use daily activities to teach new skills
- Allow them to be in charge of some activities
- Use their sense of control to help others-brainstorm-but not too ambitious
- Talk about what the control and what they don’t-be concrete
Use a Visual Schedule!
- Helps to move forward
- Gives steps in order
- Concrete reminder
- Sense of accomplishment
- Know when its done
- Refer to schedule
Motivation
- They have to feel like they are in control-let them have some
- Compete against each other- pedometer- problems
- Use timers and other means to keep it going
- You have to make it fun
- You have to be accountable-say what you mean and mean what you say!
- It may ebb and flow and that is natural- don’t fight it!
