Saturday, June 11, 2011

Prader-Willi Syndrome and Inflatables

I am consistently amazed at the things that come up, about which I never would have thought twice if I did not have a child with special needs.  The learning curve, as we weave PWS into our lives, has been one of mountainous proportions...or I could say, it is a curve as high and bouncy as the inflatable S tried to scale the other day.

The PTA for my daughters' school has, for the past few years, paid to have four huge inflatable 'things' brought into the cafetorium.  Throughout the day, each grade level has a chance to go wild and crazy on these things.  The picture below is from Google Images, but there was one of those at the school that day.
Now, the PTA at the school is great.  They really do quite a bit for the kids, and provide a great deal of help to all the teachers there.  So I don't have a problem with this activity being provided for the school at large, even though there are special-needs-kids in the school population who could not possibly play on these things, for various reasons.  When S brought the flyer home announcing this "Fun Day", I know I groaned inwardly and may have done so audibly as well....I just wasn't sure how S would do on these things.  Plus, even though there are only two grade levels going through at a time, we're still talking about 200 kids cycling through 4 inflatables over about an hour's time.  The noise level is incredible...there are kids moving, running, bouncing, flinging everywhere.  They all definitely have fun, but for a child with low muscle tone and poor overall muscle strength, how would this work?

So, I went up to the school Tuesday afternoon, to supervise/help her with this.  She was excited!  She has been on inflatables before so she is familiar with the sort-of-out-of-control environment that happens to groups of kids when these things are around.  So, first she lined up for this rock-wall-climbing thing; squares on the incline to put your foot on, with ropes to pull yourself up.  I told her she could try it but if she found she couldn't make it up and over, to just stop and slide down.  She did a great job trying, and made it about halfway up - but the combination of trying to balance on the footholds AND pull herself up with the rope was too much.  So that one will have to wait 'til she's older and stronger.

Then, she lined up to try this obstacle course thing...have you ever watched that show "Wipe.Out"?  This inflatable reminds me of what contestants go through on that show, on a much smaller scale of course!  
It looked pretty much like the photo above, although the one at the school had a net roof on it.  The beginning is at the left side of the picture.  As soon as you get kids moving through it, the whole thing is moving and bopping and you really have to keep your balance.  And of course, you have to be able to move fast, or you are going to get squashed by kids starting after you but landing on top of you as you both exit at the same time.  Sophie did not enjoy this one either; I give her a lot of credit for wanting to try it, but this is another one that will wait until she's a bit older and stronger!

So I told S that, for that day, she would stick the two inflatable she could go on and enjoy without hurting herself!  These were two slides which looked like the top photo, one a little higher than the other.  The other students had wait a few seconds longer for her to climb up, and then get situated to slide down, and then "dismount" at the bottom - but it went okay.  S enjoyed herself and, oddly enough, did NOT tire herself out as much as I thought she would.  I will probably have to go up to the school every time the PTA plans this activity, though - or make it mandatory that an aide stay with her the entire time, I guess.  I mean, she can definitely participate on at least some of these - but if she had not been supervised I'm pretty sure she would have gotten hurt.

Another instance of life with PWS - walking that fine line between wanting to have my child participate as much as she's able, yet also wanting her to be safe and/or wanting the rest of the world to just slow down so that she can participate.

Thanks for reading-

1 comment:

Rachel said...

I am glad she was able to participate at least on some of the inflatables! I never went on those things as a child they look like fun to me but I can see how they would be more difficult for a child with muscle tone issues.