Saturday, April 23, 2011

Prader-Willi Syndrome: Community = Room for Everyone

I still remember, quite vividly, many of the moments and experiences of the first six months after S was diagnosed.  I remember sitting at the dining-room table, on the phone, taking notes as I listened to the geneticist tell me the news.  I had never heard of Prader-Willi Syndrome before, neither had my husband, neither had any of my family. 

We weren't alone, though.  Even before our second appointment with the geneticist, after she had evaluated S, the bloodwork had been drawn, and the diagnosis was certain, I had landed at the website for the national Prader-Willi Syndrome organization PWSA(USA).  We had taken with us to the geneticist's office, printouts of pages from that website, to help us ask as many of the right questions as possible.  It was significant, I thought, that the geneticist also had printouts...also from that website.  After that appointment and through the next months, we would begin meeting family after family, both from our own state and elsewhere, who were on their own - but a similar - PWS journey.

We had found our new "family", our new community which extended around the globe.  At this point I can't even begin to accurately count how many families I have met in real life, online, on Facebook, through message boards, and at conferences, who feel like my family.  I mean, I know we might not be best friends were we to hang out in real life - but it is immediately understood, among PWS parents (and any extended family who truly try to understand the PWS life), that we all "get it".  We all know what's involved in living with PWS.  We all know there are good days and bad days.  We all know, I think, that being a special-needs-parent does not automatically mean we are "Perfect PWS Parents"...rather it means we all try hard to give our children good, happy, healthy lives, but sometimes life doesn't cooperate with those efforts.

To me, the word "community" implies inclusion of all realities and all perspectives.  In the PWS community there is room for all kinds of families.  There is room for parents whose child is in an extremely healthy, stable phase of PWS.  There is also room for parents and families where the individual with PWS is definitely not in a calm, stable phase and the family is struggling on a day-to-day basis to get through.  There is room for families whose child has never had a bite of fast-food pass their lips, and there is room for families where the parents are okay with the occasional fast-food or restaurant meal.  There is room for families where the parents have decided to have the whole family go vegan/gluten-free/low-carb or whatever....and there is room for families who have found success without doing those things.  In this community, in my opinion, it is perfectly okay for PWS parents to vent, to express frustration with PWS, to be open about the sometimes horrifically bad days PWS can cause for an entire family.  It is also perfectly okay to brag about the successes of a child with PWS, because oftentimes those successes are hard-won. 

While I would never provide scads of detail, to parents of a newly-diagnosed child, of every difficult/heart-breaking/challenging/utterly frustrating situation PWS can cause, I am not going to sugarcoat anything. And I think every PWS parent has the right to say "hey, this really sucks" if they need to.  Some days, PWS does suck.  If it were easy and effortless and our children never suffered, sure, then parents would not have much to feel angry/frustrated/depressed about.  But I firmly believe that even as we all fiercely love our children, that love and acceptance can indeed coexist just fine with honesty about how difficult living with PWS can be.  I believe in keeping it real, in telling it like it is, when appropriate and to those parents who are ready to hear it.  Every PWS family out there IS going to face their own variety of PWS challenges....that is the nature of the PWS beast.  It is okay to comment on those challenges, and I think the last people who should ever be judgemental about the venting comments of a PWS parent is...another special-needs parent. Parents who are having a rough time with their child should always feel okay with talking about it; because there are definitely other families out there who are also going through a rough time (that's not a "glass half-empty" prediction, that is a fact - I've seen it happen many times).  If a parent who is going through a hard time with their child-with-PWS is "scolded" for talking about their less-than-sunshiny experiences, what's the consequence?  That parent is made to feel alone, as if they are doing something wrong with their child, that the complex challenges of PWS are completely controllable and anything less than total calm in their house must be because of their bad parenting.

What parent EVER needs THAT kind of response??

We are all on the same PWS sailboat....when another parent starts to sink with the weight of the PWS life, give them a hug and a life preserver, don't make them walk the plank.



Colleen said...

Beautifully said, I now need to go get the tissues.

Rachel said...

Very nice post! Why are parents so tough on each other in general? There are so many ways to parent that are great and different. I will never understand the people who want to make it a competition instead of being supportive of each other adding to that the challenges that come with having children with special needs it seems the support would be even more essential.