Prader-Willi Syndrome Questions, #6: What can I do to help my newly-diagnosed relative/family friend?

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

A. This is an excellent question, as obviously it is more than just the child, and the child's immediate family, who will be affected - both short-term and long-term - by the Prader-Willi Syndrome diagnosis.  [As a side note - to any of my own family who might be reading this...rest assured you have been very supportive of our routines with S!  If the families and friends of all PWS families could be supportive as you have been, that would be great!!]

The first thing that those involved in the child's life should do, is learn about the syndrome.  The best way to do this is to visit http://www.pwsausa.org/, which is the website for PWSA(USA), the national Prader-Willi Syndrome organization in the United States.  There is also an international organization, IPWSO, which also has a website, http://www.ipwso.org/.  Both of these organizations are well-equipped to not only provide immediate and crisis-based assistance, but they are a great place to start in terms of connecting with local/state organizations, which will then put you in contact with families or parent mentors near you, if you wish.  I strongly encourage parents, caregivers, and all extended family members of the individual with PWS to connect with these organizations and local PWS organizations, and stay connected permanently by maintaining membership.  The support and advice gained from connecting with other families is, in my opinion, crucial to providing the child-with-PWS and his/her caregivers with much needed, and appropriate, support.

The second thing you should do, as you learn about the syndrome, is take everything you learn about it with a nice helping of objectivity!  PWS is very much a "spectrum" syndrome, which means that descriptions of its symptoms are of necessity very comprehensive and will cover every last medical/behavioral/psychological observation of individuals with PWS, if they happen in enough cases.  This does not mean that every single one of those will happen with the child you know.  Those comprehensive descriptions should be used as education, not as prediction.

The third thing you should plant in your brain, as you are supportive of the parents of the newly-diagnosed individual, is that THE PARENTS ARE THE EXPERTS ABOUT THEIR CHILD.

Let me repeat this, because it is important: THE PARENTS ARE THE EXPERTS ABOUT THEIR CHILD.  They  are the people living with the syndrome, trying to raise the child with PWS, day-in and day-out.  If you are spending time with the family, you must absolutely respect the policies and procedures, systems and routines that the parents have put in place for their child with PWS.  Raising a child with this syndrome is, without a doubt, going to look different than perhaps what you did with your children - and that is okay, it is necessary for the health and safety of the child with PWS for the parent/caregivers to do exactly what they are doing.  If you have concerns, ask the parents in a respectful way, for the purposes of educating yourself but NOT with the goal of changing what the parents are doing.  Further, if the parents/caregivers of the child with PWS have gotten to the phase where their child is on a restricted-calorie diet, and every calorie is counted, DO NOT feed that child anything without first asking the parent/caregiver.  This means, do not even feed the child a cookie...or a juice box...or even a stick of gum.  Nothing.  Calories are calories are calories, and when a parent is counting calories for their child with PWS, your action of giving that child food/drink of any kind is an act of disrespect to what that parent is trying to do for their child!

I think there is more I can say in answer to this question - but I'll stop here for now.

Later,
Jen