Tip of the Week: Don’t tell me no

Andy is a 16-year-old boy in our Children’s Services program.  When he was asked what advice he would give to people working with him, he said,“Don’t tell me no.”  There are so many restrictions placed on people with Prader-Willi syndrome in the name of safety that sometimes we forget how often we say – either outright or with our actions – the word no. 

Safety and well-being always come first, and that places us in a position to creatively guide our students in a way that allows choice while still maintaining health. This is also true for families who are in a position of providing constant supervision and monitoring in an unpredictable world. Tell your kids what they can do instead of what they can’t do. Avoid using the word no unless you are faced with a serious, health threatening situation. Give as many choices as possible throughout the day; choices as small as the socks they are wearing as well as bigger choices that affect the whole family. 

I spoke to a mother recently who had her son pick out their new hot water heater. She placed pictures of six different models in front of him, all appropriate for the home, and let him decide. She reported that he was proud and felt like the important family member that he is. There may be many, many things that your child cannot decide on, but there are many more things that he or she can choose about their life.

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices.