Friday, February 25, 2011

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 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, 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,  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.



Terry Guinn said...

Great post Jen!

You are right, so much more to say... But that is part of the journey to be shared. The emotional side of this will be the hardest in many cases, but to be prepared as a "relative/family friend" with a better understanding at the beginning, will help... When the new parents are ready for that help.

Rachel said...

Great informative post Jen! I can see how well meaning relatives would think it OK to offer a cookie or something and how devastating it must be to the child's routine. Its great that you are educating people with these great posts!

Yes I Blog said...

I think it's so true that people fail to recognize that the parents know the most about what THEIR individual child's needs are. Even if your child has a disability and textbooks say to do "this" or "that", sometimes YOUR child may need something a little bit different. Respecting parents and their wishes and instructions is so important.

Great informative post. :-)

And again, the issue with foods, so many well meaning people don't think a little thing like a stick of gum or a cookie or a cracker can make a difference, but it could be life or death in some kids (allergies, etc) and in this situation could really cause problems and disruptions. Definitely makes you more aware of asking before giving, no matter the child.

(((HUGS))) You are an awesome mom and example girl!

J and Pa said...

Thanks for this post, Jen! But please tell more!! J&I would very much like to be more involved in K & S life, give respite to you/B.

Sometimes I wonder if the best way we could help would be to take K on give her one-on-one quality time.

Then again, I have over 25 yrs. teaching art/spEd/MH/blind/ED for ages 2yr-gr. 12. In a challenging school system. Yes, it has been pointed out to me MANY times that I do not have my very own kids. But, my principals & parents &
students thru the years could/would vouch for me.

J & I are aware that we have somehow gotten a reputation in the family as a couple of irresponsible hippy weirdos. That hurts. It is not true. We've never done drugs, smoked, had wild sex orgies, or tried to push our politics or religion on others. That's SOOoo the parents'job! We are painters & do not eat much meat. We love art,music, dance, books, opera, animals, outdoors, travel, explorng, history, & having new adventures.

So, if you want, clue us on S's shots. And behavior mod, etc. for her meltdowns... or whatever else.

We are a phone call away if you need us. We LOVE you guys.

JMB said...

Thank you, everyone, for reading the blog and for commenting!! I so appreciate your thoughts, comments, kind really means a lot to me.

J n Pa - Wow, thank you. Your comments kind of made me giggle - really? I don't think of you as irresponsible hippie weirdos (but I have days when I wish I could be one)! You are cool people. And Paula, I did not know you had that much experience with the MH/SpecEd etc. community. We will talk. It is not hard to do S's shots, at all. The behavior mod...that can be the hard part. Love you too!