Tip of the Week: PWS Awareness (Prader-Willi tips ‘Week 4’)

In honor of Prader-Willi Syndrome Awareness Month, Latham Centers shared a “Tip of the Day” on social media throughout the month of May. Here are this week’s tips:

• Even with the list of challenges that people with PWS have, the list of what is good is so much longer. People with PWS are smart, funny, good friends, creative, and all-around people that you would choose to spend your time with. We, at Latham, have the honor of working with these incredible kids and adults and cannot wait to see all of the amazing things that they will achieve in their lives.

• Remember to build in success throughout the day. Due to impulse control issues and deficits in understanding social cues, it can take a lot of work for the person with PWS to get through an entire day without feeling anxious and frustrated. Be sure to praise often and ensure that there are activities that will allow the child or adult to feel accomplished.

• There are a lot of opinions and options for the ideal diet for your child. Learn as much as you can and pick the diet that is closest to how the rest of the family eats. You want a diet that is healthy but also sustainable over time. Make changes when you need to and be open to trying something new if one program isn’t working.

• If your child is struggling in school in one subject or even in all subjects, be sure to take a close look at how they are being taught. If a child isn’t learning, then it is very possible they need to be taught differently. When a child is not making strides in school, let’s change the way we teach them and not put the blame on the student.

• People with PWS struggle with transitions more than any other time of the day. Instead of limiting transitions, which is not always possible, use coping skills, schedules, and timers to help ease the anxiety that comes with transitioning from one activity to the next.

• Create a safe space in your house if your child has a history of aggression or property destruction. Having your child move to this room at the first sign of agitation can help to calm them down and avoid other family members and their belongings being harmed.

• People with PWS can communicate effectively if they are given the right tools and environment. During an escalated emotional state is not the right time to discuss feelings, but an ongoing conversation every day will allow your child to express themselves and give you insight into what can help to calm them when anxiety sets in.

• People with PWS often have an understanding of relationships but do not always have the opportunity to date or meet potential boyfriends/girlfriends and/or platonic friends that understand their syndrome. Encourage your child to safely use social media to meet other kids their age through agencies offering opportunities to connect, go to conferences and be sure to attend any events that are being sponsored by your local PWS association.

• PWS is a complex disorder that requires specialists in many different areas. Reach out to the greater PWS community if you feel stuck, frustrated or confused about something that your child is doing or feeling. You are never alone and reaching out can make all the difference!

Patrice Carroll, Latham Centers’ Director of PWS Services, is world-renowned for her Prader-Willi syndrome expertise. She works with Latham students and residents, their families, and other experts, continuously learning and teaching about PWS best practices. If you have PWS-related questions, we invite you to email TipTopics@LathamCenters.org.