PWS Tips

One of the best ways to help someone with Prader-Willi syndrome get more exercise is by not calling it exercise! Getting active and having fun together doesn’t have to be a chore, and once the habit is formed, it will be hard to break. Here are some ideas for you and your child: 1. Have an…

Halloween can still be a great holiday for kids with Prader-Willi syndrome, even without the candy! Many families celebrate Halloween by dressing up and going trick or treating but with a twist. Some families switch the candy for a present at the end of the night and others allow for one piece a day for…

As we enter the holiday season it is especially critical to seek out and maintain support through the PWS community. Either in person or online there are many opportunities through conferences, local associations, or virtual get-togethers to be around people who understand the unique stressors of being a parent or loved one of someone diagnosed…

Meaningful work is one of the crucial elements to quality of life. People with Prader-Willi syndrome have talents and skills that are assets to many employers, but they may also require a level of supervision that other employees may not need. It is our job to advocate for the necessary accommodations to allow the person…

Even if your child is not able to recall or talk about what led up to a behavioral incident, it is important to deconstruct the events leading up for your own information. Whether or not it appears that there was an antecedent, there was, and finding it may prevent the next incident from occurring. Look…

People with Prader-Willi syndrome may need additional support when it comes to relationships. Our job is to ensure that they have the opportunities to learn and the skills to navigate the world of friendships. That may come with some failures and risk-taking. Giving them the chance to safely access relationships will have a long-lasting impact…

Children and adults with Prader-Willi syndrome can become easily overstimulated and overwhelmed over everyday things. Create a space where they can go when the environment is simply too much for them. This doesn’t have to be a whole room, it can simply be a separate space in an existing room.     Patrice Carroll, LICSW,…

Back to school can be hard for everyone, but especially for students who need structure and routine to be successful. Try starting their new routine a week early. Practice the new bedtime and morning routines before it matters. Try on new clothes to make sure your child can tolerate the feel. Walk around in new…

Many kids with PWS latch on to favorite objects and/or themes, such as a particular animated character or celebrity. There is nothing wrong with this and in many cases, it is developmentally appropriate. Be aware that if you notice your child only being able to complete a task when it involves something connected to their…

On August 4th, the Latham Hawks played an incredible dodgeball game against the Children’s Program Staff. Despite the light rain, Latham students said the game MUST go on and charged out to the field at 3:30, excited and prepared. Not surprisingly, the students beat the staff 3-0. Danny Anderson, Residential Activities Coordinator, said the student…