TIP of the WEEK: Coping with Loss

Coping with loss can be a challenging time for any child but a child with PWS brings additional challenges to the grieving process. Whether it be a family member, friend, or pet, the person with PWS needs time and patience to go through the grieving process.

Initially it may appear that they are not effected by the loss and may go through their typical routines without disruption, however, a delayed reaction to the loss is very common. Allowing the person to go through the typical traditions of wakes, funerals, family gatherings or whatever your family does following a death is important, even if it is a modified or shortened version of what the rest of the family is doing. It is common to see people with PWS have difficulty on anniversaries of deaths of loved ones and, like many people, cannot always make the connection between feeling badly on or around that time of year in the years following. Pay close attention to the routines that they may be missing out on if the person who passed spent time with them regularly and find a way to replace that activity, or at least time spent, with another person.  

Remember that even though the experience may be different, the loss and how they react to it should still be honored.

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.