Monday, January 26, 2009

Prader-willi syndrome

I really want to get into the habit of blogging everyday but I cannot think of anything really creative right now. So...I thought I would do a blog on my sons disability. Prader-willi syndrome. I could type up all the facts (here are the facts on it but I would rather explain how it affects our family.

If the average person looked at our son....and knew we counted his calories...they would think we were crazy. He is tall (thanks to his genetics and growth hormones) and is a good weight. He could be slimmer as he is in the 75%+ for weight...but he is for height too and looks just right to me. Before bed every night I have to look through his pockets and through his drawers as even with almost constant supervision he manages to hide things. Cough drops, his dads snack cakes, the rare candy we have in the house, food out of the pantry. He will find the opportunity and hide it in his room for later. We also have to keep all medicines out of reach as will try to consume anything he thinks might taste good. The GENIUS who decided to make Pinesol in colors that look like mouthwash should be shot. LOL. Years ago I walked into the bathroom when he was going to the potty just in time to keep him from gargling pinesol. Needless to say all cleaning supplies, toothpaste, mouthwash is out of his reach.

He also has major impulse control issues. I'm not sure if that is PWS or ADHD or both rolled up into one. He can say some REALLY bad things to his sister and other children when my husband or I are not within earshot. I'm not sure where he gets this as we do not watch tv and we are very careful of the videos he watches.

There's more challenges but I will save that for another blog. Instead I want to describe the positive characteristics of our son. He has made my husband, daughter, and I more patient than we could ever be. He is Mr PERSONALITY. He has been this way before he could talk. (3yrs old) When we go to stores and restaurants EVERYONE knows him...think CHEERS. "Hey it's A-MAN!!" I'm a normally shy person and he has caused us to meet and know more people than I could ever imagine. At restaurants it is a norm for waitresses, store owners, other customers to sit down at our table just so they can be blessed by talking to him.

I could type on and but I will save it for another day. Here is a picture from today of the hubby and A-man.

1 comment:

  1. LMAO that's a really odd picture of my husband...don't tell him I posted it. ;)He really does have 2 legs.