TIP of the WEEK: Don’t Stay Silent

It is human nature to compare ourselves with others, measure our success by the achievements of our children and compare our lives to those in similar circumstances. But what happens when our lives are chaotic, milestones are dramatically delayed, and our children do things that we are certain other children are not doing?

There are behaviors that children with PWS display that are challenging at best and seemingly unmentionable at their worst, at therein lies the problem. Not talking about the very challenging behaviors- skin picking, rectal picking, vaginal picking,  fecal “play” are actually fairly common PWS behaviors but because parents are often shy, embarrassed, and hesitant to talk about them few get the emotional support that they need. If your child has any of these behaviors (or any other that you feel that you are alone with) talk about it! Share your experiences with others. I guarantee that you are not alone.

You may be concerned that people may view these topics as disgusting or something that should not be talked about but that is so far from the truth. If you are part of the PWS community then you will be comfortable and open to having these conversations because they are the reality of our lives. Don’t remain alone and silent- reach out and ask for the help that you need, get the support that you deserve and offer your ears and your heart to others in similar circumstances.

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.