Wednesday, May 14, 2014

PWS Awareness Month!

Here are a few photos from today's homeschool field day. It was a fantastically fun afternoon. I have been really anxious about it as I have to stick pretty close to A~man. Not so much because of food but he has impulse control issues and can say some pretty strange things at time. Well...he ended up pouring water on a girls back (hey it was hot lol) and I know he said something to her he shouldn't later as I saw her theory is he likes her. I'm trying to focus on the positive though. In the running picture you can see he really isn't all that far behind the rest of the kids when he ran and he ran non stop till 3/4 around the field. I was impressed. He also did quite well with balancing the egg. It's so nice to see him doing well with peers.

I recently heard about a mom with a wee one diagnosed with PWS. Another homeschooler in fact. I'm revisiting this older post from years ago because I think it is worth posting again!

Monday, November 8, 2010

There are positive things with Prader-willi syndrome!!

Just a's been a long time since I've blogged. Lots of changes...lots of stress...and consequently the way my body deals with stress is lots of neck/back/ and headaches. Nothing I can really blog about as I do not want it OUT THERE in blogland but we are plugging along...our family is GOOD. God is just redirecting us where he wants us to go. God is good! :)

There have been many tv shows dealing with PWS...and one that aired just last week. I haven't seen any as we do not watch tv/cable but a friend is going to send me a dvd of it. From what I have read of PWS mom comments on shows such as this they show EXTREME cases...I guess that brings awareness but I wish they would air positive things too. (Maybe they do?? ) I hate to see new parents of pws children get that shock. There are positives. I hope people reading my blog...or people that know my son see that. My son is so much more than the EATING OBSESSION part. He is is a riot...not always appropriate but he makes people laugh. Kindof in a Jim Carrey sortof way (think MASK). He genuinely cares about people. If I know a friend/relative is sick sometimes I avoid telling him as he will obsess over it...worry about them. Here is an example even though it was a stranger.

With some exceptions I have given up on my son NOT talking to everyone we come in contact with ( to have DEEP conversations with). I let him...if things become bordering on rude I intervene. ;) Last week we went to Walmart..we rarily go to Walmart but he knows most of the cashiers. Let me describe the customer in front of us- 60ish,well to do, her cart looked like she was preparing for a dinner party of some sort. She was very snooty IMHO to the cashier who was the same could tell she thought she was better than this lady that worked at Walmart.  She leaves...enter my sons conversation.  This lady he remembered had cats...he asked her about them. Then he noticed the back of her neck was bandaged. He asked her what happened. She went into graphic (too much ahahhaha) detail about some sort of growth she had (I'm sparing you the graphic details) that had to be removed...and she said she was in a lot of pain. What was my sons reaction? He said "I WILL PRAY FOR YOU" . Now these are not just words for my son...if he says he will pray for someone he deeply means it. As a friend recently told me..he has a heart of pure gold.

With that I must say goodnight. Oh but just incase a dear local friend/blogger is reading this...we are praying for you with your surgery. I didn't tell A~man the specifics but he is too! I'm making you a sprize too for your birthday!! Z is helping! Hugs to you K!!!

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