- It is not unusual to not see any visible signs of grief right away. Following a loss, the person with PWS may appear as though he or she is unaffected at first. I have seen people take several years before completely understanding that a loss occurred and that it is permanent. Alternatively, I have seen people begin the grieving process immediately following a loss but display feelings through behaviors rather than verbally expressing how he or she was feeling.
- Don't try to protect the individual from the truth. Be honest if someone has died and avoid trying to spare feelings by leaving him or her out of the rituals that follow a death. Rituals are an integral part of processing loss and the person with PWS should be allowed this opportunity.
- Make something tangible. A pillow or stuffed animal from the persons clothing, a memory book or box, a collage of favorite photos--anything one can hold and go to when missing the deceased. Grieving may happen when the PWS person is alone so allow he or she to have something to hold and look at without feeling obligated to talk about how he or she is feeling. Verbally processing the loss may be overwhelming, if not impossible.
- Keep routines the same. As much as possible allow for routines to be unchanged. This will promote feelings of safety and security during a difficult time.
- Loss comes in many forms. A person does not need to die to be gone from your child's life. If a person who was important to your child will no longer be in his or her life, it is important to honor this void and the uncertainty that can follow.
The most important thing to remember is that regardless of your child's behavior or their appeared indifference, grief is being experienced and should be honored and supported.
Manager of PWS Services