Sunday, March 27, 2011

Depends on the listener

Talking about life with S, and about life with Prader-Willi Syndrome, is always influenced by the audience.

I guess this might be obvious, and no surprise.  But it is something that really crystallized in my brain just now, as a result of a F.acebook post I just read.  Another PWS mom posted a link to an article about a family whose youngest-of-four-children has Down's Syndrome. What surfaced most clearly for me, with this article, is the mom's emphasis on how life with her daughter-with-DS is  It is what it is, and since they have three other children, life is just whatever it is with a house full of children.  In other words, their daughter's DS diagnosis doesn't define the family's life, and while the mom does write about it sometimes on her blog, it doesn't direct the blog's content.  They live family life just like any other family.

So, given that the article ran in the family's area newspaper, and thus had the general public as it's audience, part of the message here seems to be that children with DS or any diagnosis are children just like any other children, and life with DS is just like "regular" family life.  Thus the ultimate, if subconscious, outcome of an article like this might be better overall acceptance of individuals with special needs...and for that, I am intensely grateful to this family and this mom, for putting themselves out there into the public eye.

I kind of wonder, if this mom were trying to raise funds for a DS non-profit, for research or quality-of-life projects, would her message have been different?  Because folks, let me tell you - regardless of how smoothly her family has adjusted to her daughter's diagnosis, I bet there are still aspects of DS with which she might wish her daughter didn't have to contend.  That's the challenge with education about syndromes which affect children - it is part consolation, part brutally honest education, and all of it is true.  Here in my house, because of PWS, our good times with S do happen - and those times are really, really good - and thank God for that because the bad times can be really, really hard.

Talking about Prader-Willi Syndrome, and S's life with it, and our adjustment to it as a family, is very much influenced by my audience.  Some examples:

Talking to a parent of one of S's classmates, about an upcoming holiday party: "I have to count S's calorie intake very carefully, so I'd appreciate it if the holiday party treats weren't 100% junkfood.  And, please don't offer her seconds."

Talking to the parent of one of S's classmates, about a potential playdate: "Yes, S can come over to play with your child....but, guess what, I have to come with her, for her safety.  Plus, here are a few pamphlets for you to read about PWS, before we come over."  (I'm not sure I would do the pamphlet thing - but I would have to go with S, and I would have to educate the parent, because American kids in general snack too much so I'm sure that would come up during most playdates.)

Talking to parents of younger children with PWS, sometimes newly diagnosed: "S has done 100% better than we ever expected.  Life here is calm, and the food aspect of PWS has been manageable."  This is a true statement, for us/S/our family.  I'm not going to lay out all the tough parts of PWS to parents who have just started down the PWS path - getting the diagnosis and learning about the syndrome is enough info for them at that point.

Talking to neighbors: "Yes, S can play for a bit....but please do NOT offer her any snacks.  Which means, that if your child starts jones-ing for a juicebox, please let me know and I'll take S home."

Talking to S's teachers: "The only thing that is keeping S from having a "negative food episode" is opportunity.  She is not to go ANYWHERE in the building unsupervised, and she must be supervised by an adult, not a classmate.  If she starts to have a meltdown please do not restrain her, as that only makes it worse."

Talking to any group which is totally unfamiliar with PWS: "Because of PWS my child feels constantly hungry.  No, it doesn't matter what or how often she eats.  Yes, because of this she potentially might eat until her stomach bursts.  Yes this has happened to individuals in the PWS community, with fatal outcomes.  No, appetite suppressants do not work, nor does any stomach-altering surgery.  Yes, your donations are extremely important, not only for research projects but also for quality-of-life efforts, like PWS-only activities where our kids don't have to worry about pervasive, anxiety-producing food opportunities or gaining 10 pounds in one weekend.  Yes, S is doing well but PWS still sucks.  No, there is no "cure"....yet."

And those are just some examples....I could think of many more.  To fellow families with younger children with PWS, I always want to emphasize the "livability" of PWS - because THAT'S TRUE.  You adjust, and it becomes your "normal" as a family.  It's do-able, and you will have lots and lots of regular moments with your family.  But to the general public?  No, this isn't "just like normal life", as most of society knows it. This is hard.  My daughter struggles, minute by minute, with what PWS does to her body.  She still has a right to, and deserves, acceptance and understanding from society as a whole; but that doesn't change her daily reality, or make it less worthy of funding for quality-of-life funding or research projects.

Thanks for reading!


Terry Guinn said...

Great post Jen! It's interesting what becomes "routine" for a family that includes a special needs child.

Rachel said...

Great post! People are looking for information out there on PWS eight people have stumbled on my blog by searching for it this week! I just hope they found the link to your blog in the process as I have no information to pass along! Keep talking about it and I'll keep reading!

JMB said...

Thanks Terry!

Hi Rachel - really? wow, that's cool! I'll keep on writing, for sure....thank you for reading!!


PythonKatie said...

Awesome Post! I have learned so much from your blog! Thanks for always being so open and honest.

Laurie said...

Good information. What struck me about your post was actually something about the family who had a child with Downs. I couldn't help but think that there are some disabilities that are much harder to live with than others. While DS is nothing to sing and dance about, I can absolutely see that it doesn't affect their family systems and they've found a way to just "be" as a family.

I don't think the same thing can ever be said for PWS. It dictates so much of how the REST of the family lives; much more so than DS. It hits at the very heart of what is so important to us - food. Our traditions, our memories, our comfort, our joy, our sense of community and camaraderie, our family bonding time... all these are affected in a negative way that some syndromes will never inflict on their families.