Monday, April 26, 2010

Raingutter Regatta = extreme anxiety for a mom with a child that has Prader-Willi syndrome

A~man has been in scouts for 3 years and is now finishing his Bear year. I will admit that I truly only do Boy Scouts so A~man can have social interaction with just boys (which is a challenge for him)...plus the leaders are awesome, accepting and inclusive. Also I love the activities they do which are SO what our family likes to do with it being nature and the big outdoors focussed.  Most parents...or so it seems...go 101% with their boys in scouts. Admittedly I do about 75%. I am hoping I can pull it together so he can complete what he needs to for the year. But on top of geography club,  drama club, Brownies, 4H, Z~girls running club, Z's soccer, A's occupational therapy and HOMESCHOOLING...I am doing the best that I can. So I am really praying about what I need to do as far as activities for next year. I am a homebody and haven't been spending as much time at home as I would like!

Tonight we participated in the Raingutter Regatta . We go to meetings and a couple other extra events but due to hubby's work or our busy schedules we do not go to the extra stuff. Infact I have avoided the Regatta like the freakin PLAGUE. Why?  The boat part I am fine with but when they are finished they fill up the raingutters (foil over the top) with ICECREAM and the kids eat out of it. Now I am not a germ freek so that is not the issue at all. But as a mom of a child with PWS it is emotional for me. A typical child may eat and eat all crazy like but y'know what? he WILL get full...or throw up. A child with PWS does not know this "full" they would eat and eat and eat.  I was feeling such anxiety about it and wondering if it would end with me dragging him to the car. But you know what? That did not happen. YES I let him eat more icecream than I would normally do but then I whispered in his ear "3 more bites" then you are finished. I underestimated my boy...he was just fine and walked away. He did brag about how much he ate but so did all the other kids. This gives me hope that maybe...just maybe as he grows older he will be able to walk away from food...or at least be redirected to something else.

5 comments:

  1. That is a wonderful accomplishment. I think he will be able to do it as he matures.

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  2. If I can help you in any way as you plan for next year, please let me know. I would be glad to pull some resources together for you over the summer. You sound like such a wonderful caring Mom! Blessings to you sweet lady!

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  3. Great story! You are such an inspiration! I can't imagine facing the challenges you do every day with such a good attitude. Good job!

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  4. I'm glad things turned out well for you. I can relate to the anxiety you expressed about the social event. My daughter has a peanut allergy (diagnosed last summer). Birthday parties and such are nerve wracking because a bite of the wrong thing could ultimately cause death. I know thats a bit dramatic but nonetheless its a possible outcome that I didn't have to worry about before. So I know my situation is not the same as yours, but I just wanted to say I can relate to the emotions you described--the avoidance, the dread...

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  5. Oh I so understand the peanut allergy. My son has that too although I do not think it is as severe as it used to be.

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