People with Prader-Willi syndrome are generally loving, sweet, kind individuals however their emotions tend to be heightened which can sometimes present problems. Additionally structure and routine are extremely important and unexpected events, no matter how small, can turn into meltdowns. Keeping the follow tips in mind will help you, your friend or family member, and most importantly, the individual with PWS.
- Speak in concrete terms; people who have PWS have difficulty with abstract terms
- Let the individual who has PWS know what to expect – what time an activity will take place, what will happen, etc.
- It’s ok to set limits on repeated questions; i.e. “I’ve already answered that question, so I will only answer it one more time”
- Keep your promises; if you say you’re going to do something, do it
- Reasoning with someone when they’re in the midst of a meltdown, will not work
- Re-directing the individual to a new or desired activity will often be successful, however there are times when you may need to just give the person time to calm down
- Allow your friend to manage a meltdown or behavioral issue in their own way; it may not be how you manage your children, but they deal with this every day and know the best way to handle their child
- If someone with PWS is left in your care be sure to follow their parents instructions for dealing with behavioral issues and stick to the schedule
PWCF maintains online and in-person Support Groups for parents and professionals. Friends and family are welcome too.
PWSA (USA) maintains several Facebook support groups.