Prader-Willi Syndrome questions, 6A - How to help

[Further thoughts on the answer to this question, originally posted here.]

Q. My grandchild/niece/nephew/friend's child has just been diagnosed with PWS. How best can I be of help to them??

In addition to learning about the syndrome and respecting the decisions the parents make in the care of their child with PWS, there are some additional ways to help the individual with PWS and their immediate family:

• Because children with PWS are at their best when they live in an environment of routine and structure, be consistent when you spend time with that child (or adult!) with PWS.  If you say you are going to do a certain activity with them, then do that activity with them.  Do not ever, ever, ever mention something in passing to that child, if you have even the slightest doubt about being able to act on it.  Also, once the child knows about an upcoming activity, they will often become obsessive about it.  So, if at all possible, don't talk about events or activities with the child, which are happening any further into the future than that day or possibly the next day!
• Parents of children with PWS often find that attending family parties or holiday gatherings are extremely stressful situations - because these events so often center around a huge meal or a big table packed with food!  Obviously this creates not just an anxious situation for the child with PWS (if you felt you were starving, constantly, wouldn't you feel overwrought at such a display?), but a dangerous one as well.  Children with PWS cannot sense when their stomach is full-to-bursting, and so when well-meaning relatives keep slipping the child "a little of this" and "a little of that"...well, pretty soon that child will need to be rushed to the emergency room.  Thus, if a parent of a child with PWS tells you that in order for their family to be able to also enjoy a family party or a holiday gathering, some adjustments to the menu and the eating schedule would be necessary, listen to them.  Yes, it may mean that some eating traditions will have to change...so what?  You can make new ones, right?  And, what is more important: being able to see your grandchild/niece/nephew/family friends, or having a table overstuffed with way more food than anyone should eat?

Some communication guidelines for interacting with individuals-with -PWS (I am finding these increasingly helpful with Sophie):

-Keep your communication simple - at least until you get to know the child/adult better, and know at what cognitive level he/she functions.
-Approach the child/adult with "subdued emotion".  PWS is a syndrome which is on the autism spectrum; actually, individuals with PWS are often also diagnosed with autism. What this means in terms of "subdued emotion" is that individuals with PWS are often uncomfortable with excessive emotion. It is as if that level of feeling - happy or sad - is more than they can handle. 
-Don't take it personally when the individual with PWS responds in a grumpy/mean/hostile way, to something you've asked or said.  Being able to regulate emotions is something which is managed by the hypothalamus, and since that gland is the one affected by PWS, emotions can swing between calm and happy, to upset and angry, over seemingly small things.

Finally, just a few words of advice on what not to say to parents of a child with PWS:

• "She'll grow out of it!"   Ummm, no, she/he won't grow out of it.  It's a genetic syndrome, it's part of him/her forever.
• "Hmmmm, he/she is always hungry and asking for food?  Wow, maybe that's what my dog has!"  Yes, indeed, this is a comment that is made. 
• "You worry about (fill in the blank), with your child with PWS??  Oh, that's nothing - all parents worry about their children!"  Really?  Do you worry about your child ever having real friends, once her challenges become obvious to her peers?  Do you worry about your child eating out of a trash can at school?   Do you have to lock your refrigerator and cupboards, because your child will get up in the middle of the night and possibly have a fatal eating episode?  I have found it exceedingly frustrating when other parents say "oh, my parenting experience with my non-diagnosis children is just like your experience with S!", because in essence what they are saying is that they don't think my experiences are real, that I don't have any extraordinary challenges on a daily basis.  And while I know people sometimes say things in an effort to make me "feel better", or in an effort to seem understanding, honestly I can say that most parents of special-needs-children simply want to be heard.  They want their experiences to be validated and accepted for the very real things they are.  We aren't kidding, folks.  PWS sucks, and this is hard.  It IS an out-of-the-ordinary life.  My child's constant hunger is NOT like your "normal" toddler asking for a snack a few times a day: for S this is HER LIFE, for your toddler it is A PHASE.

Well, wow, this is getting long again, so I'll stop here.  Thank you for reading!
Later,
Jen