Tuesday, April 24, 2012

The Game of Life

I like the brag about the little things that Dean does because these are the real game-changers in his and our lives. Being able to climb into his own car seat, help with dressing and undressing, put away his clothes when asked... these things make my life easier. As my friend said, half-joking, about her kids, "I hope to phase myself out by age 6." Each milestone towards independence is a victory for everyone. For us with Dean, it won't be by age 6 or anything close to it, but we have vision for him being able to do more and more on his own. Tonight, I was encouraging a fellow PWS mom on Facebook who took her child to a gymnastics class and saw how far behind her child was compared to their peers. Clearly, I can sympathize. But what I said was, I can see from having two typical kids that our kids with PWS are truly playing a different ballgame. I can pretend that it's the same, but it's really not. Our children are all given the same tasks, but without the same information. Imagine the game of life - not the board game, real life - and you set your child at the starting point to go forth. To most children, you give them the directions and watch them proceed through each event in the journey. It's not a breeze, but at least they have the resources to aid them in each challenge. Then our kids with PWS, you put them at the starting point, except there are no directions. They can't eat properly, so getting nutrients for fuel is tricky. Their muscles don't work properly, so moving through the steps ahead is tricky. Their brains don't fire appropriately and so they receive inappropriate, incomplete, or misdirected messages about what to do next. Forget the challenges, even navigating the BASICS is tricky for these kids. But they have to play the same game as everyone else does. Our kids are freaking champions. The coolest thing about all this is watching Emmett and Cole be enriched as brothers of someone who walks a harder path. Cole hardly EVER questions what Dean has to go through. He is SO encouraging to Dean in his attempts to get stronger in PT, or make an approximation of a word that Cole asks him to say. Emmett sees Dean as his big brother and leans in for a hug when he can or wants to eat or do what his big brother is doing. I praise all my boys when they do things that make us proud, that stretch them beyond their cute little selves and make them better people. But when our Dean does something amazing, yet little, like making vertical drawings on a chalkboard by himself, I rejoice. He wasn't given the directions, but he figured it out anyway... our kids are so capable, they just aren't given the same starting information.
Oh, Lord, guide us all... directions or not, however capable we think we are, we all need your help....

3 comments:

Barbara said...

Ali,
Can I share this post with my BC class on teaching special needs children? I love the way you describe the 'game of life' for all of us! Keep up the good work - you are an inspiration to us all.
Barbara

Ali Foley Shenk said...

Barbara, absolutely!

Kevin said...

It seems that PWS is in some ways like extreme premature birth. They are born and can not breath, eat, see, ... They need a lot of intervention to just get the basics going. It seems like the whole concept of numerical age should be thrown out.