Thursday, March 24, 2011

Prader-Willi Syndrome and birthdays

[Note: If you are new to this blog, and want to know more about Prader-Willi Syndrome, please visit http://www.pwsausa.org/.]

One of the first issues that often arise, in the lives of families and children living with PWS, is what to do about the birthday cake for the child's first birthday.

In any other families, this is a total NON-issue, right?  You just get a cake, or make one...baby smashes it or smears frosting all over their cute face (I have pictures of both my kids like this, so adorable), and life goes on.

But, when a child has PWS, the parents have been told from Day 1 of being diagnosed, that Food Is The Enemy.  The child - while totally uninterested in food in the first two years at least - has a faulty hypothalamus, and so at some point will begin to experience a constant, biting, gnawing feeling of hunger.  The parents' caution signals in regards to anything food-related go up immediately, of course!  And then...along comes the child's First Birthday, or the first birthday post-diagnosis.  For S's first few birthdays, we did do the Angel-Food cakes or the Jello desserts.  We've moved away from that at this point - our reasoning being, birthdays come once a year, and since her diet is not made up of birthday cake, it is okay for her to have a piece of her own cake - whatever flavor she's requested - on her birthday.

The birthdays of her peers have begun to present some unforeseen, although unsurprising, challenges.  S is in first grade now, and so she's begun to receive invites to her classmates' birthday parties.  On the one hand, I am thrilled with this development, as it shows that at this point, she is able to interact appropriately with her peer group, and develop relationships with them.  This will, I hope, make her years in gradeschool with these kids somewhat easier.  Her extreme awareness of and obsession with food, and her occasional behavioral issues, have not proven an obstacle so far to her making friends (well, at her age I'd call it more of a "Friendship Lite" situation).

On the other hand...birthday parties are a challenge.  I will be attending, with her, any of her friends' birthday parties for the foreseeable future.  (Maybe I should forewarn the kid's mom that I want a treat bag too?  Maybe with some G.odiva chocolates in it?)  PWS is so complex that it is easier for me to just go with S, than try to warn the parent of all the food issues that might come up for S during the party.  I have also recently learned that I may need to talk with the child's parent, regarding the activities during the party; S was recently invited to a birthday party which was held at a recreation center.  The invite simply said the kids should wear clothes comfortable for running around in.  Well, we arrive at the rec center, go up to the 2nd floor...to a gymnastics area...yep, you got it, the high bars, the balance beams, the big mats for doing lots and lots of somersaults, the whole shebang.  If I had known that was the nature of the party, I would not have taken S to it. 

S has never taken a gymnastics class and is not anywhere near being able to do gymnastics, owing to low muscle tone, gross motor skill challenges, and muscle/general fatigue.  It was an hour of watching all these other kids bounce and hop and climb ropes to the ceiling and swing on ropes and flip around on the low bars...while S and I walked around the area, I tried not to cry (not quite successful there), and I helped her do what she was able.  She still had fun, and I sucked it up as quickly as possible and we moved on.  I'm sure birthday girl's dad thought I was a little wacko; I/we made a choice early in the school year not to educate S's classmates' parents as to her diagnosis (I probably will choose differently for 2nd grade) so they could not have known that S wouldn't be able to fully participate.  As for my reaction to the whole situation, as I said I almost cried outright, half-way through.  I know S has physical challenges owing to PWS - that has been clear from Day 1 of all this.  It's just that, the difference between her and her peers in this area is not, usually, quite this glaring - and not as "public".  There were other parents who had stayed for the party as well, just to be there....I'm sure they also were thinking "what the heck is wrong with that mom, and why isn't her child able to do all this stuff?". Lovely, lovely afternoon.  I did let her have a piece of birthday cake.

I, however, have learned my lesson.  Birthday parties have turned out to be one of those "harder than expected" things, in our journey with PWS.  S brought home another birthday party invite yesterday; I will now be helping her with her inevitable, PWS-based anxiety about an event that is still two weeks in the murky (for her) future, and I'll be calling the parent to inquire as to the party activities.  I am dreading the day she brings home an invite to a birthday pool party....if we can't avoid taking her to that one, my treat bag for that one better be pretty awesome!! 

Thanks for reading!

Later,
Jen

2 comments:

Christina said...

Wow. I never thought about how tough birthday parties could be... Something that should be fun for all the kids involved. We haven't reached that point yet, since ours are still so young, but I will try to remember that in the future.

Stopping by from Blog Frog ~

Rachel said...

I am sorry that birthday parties too are tough situations for you and S. I know you want her to be able to join in all of the activities. She is very lucky to have such a caring Mom who always has her back! You rock Jen really.