Wednesday, November 24, 2010

we could have used an autism card today....

Before the hubby turned into bed...and I came upstairs to blog I said this to my husband "we sure could have used an autism card today. His response...which made me giggle...the kindof of relief giggle after a stressful day "we could have used an airplane full of autism cards dropped on us today!"

Autism is not our sons primary diagnosis but it is the one that seems to affect most of his challenges. Even more so than the food issues with PWS. I'm not sure what happened today. It was a red40 day but I know he didn't have any. It was one thing after another in a downward spiral. Once it started down if felt like there was no way to reverse direction. He felt this too. In the afternoon after Thanksgiving shopping he was going to get a haircut. WELL his barber closed early due to the holiday. THAT'S when things got real ugly. He semi recovered until we went in a store and bought a couple advent calendars (the ones with chocolate) and found some Jumping Beans also. My dd and I have been looking for some and A~man found some at the check out...asking the clerk what they were. I got some for US....he thought I was getting them for Him--------> this resulted in a block later him going ballistic saying he wanted to kill me at the top of his lungs and running from me. He was wearing a hoody and when I saw he was going to bolt (into the street) I grabbed his hood thus causing him to scream I was choking him. On and on and on it went. I'm not sure if people saw...I was just trying to keep him safe. He refused to hold my hand and walk finally his little angel sister offered her hand and off we went.

Later a repeat as we went to another grocery store to get an item I could not find and some redbox movies. We go into this store a lot...he knows everyones name. I'm not sure what triggered it this time but it was related to the movies we were getting. Hubby had him this time....and had to drag him out of the store while I finished shopping. He was screaming he wanted to kill "enter each employees name" :( . I"m not sure anyone heard but I do not know how they couldn't.

Too much shopping? was it the hot cocoa in the morning? who knows the cause....but a card sure woulda come in handy!

Monday, November 22, 2010

Oh what a day....

Ever have one of those days that you can't really say a thing good about? I sympathize with Alexander in the book "Alexander and the Terrible, Horrible, No Good, Very Bad Day"  Heck I could write a book about it today.  I rarily have those days....maybe a few times a year but truly today was awful. I knew it was THAT time of year. A time to be thankful alnd I have so much to be thankful for but 3 years ago I went to see all of my wonderful family in WA only to find one had driven off a cliff the night before. I have never cried so much in my life ( I don't cry) over what happened that night and I am just the "auntie". My heart hurts so bad for my brother, sister in law and 2 niecess....along with the others like myself that loved Ryan.

I saw it on my niece's (Ryan's sis) FB yesterday. I remember the day so well. Somehow I had gotten our flight there on T'giving day...why?? who knows??? I remember coming to the airport with ALL of my family waiting. This was unusual. And then my brother hugging me and whispering what had happened. It was God way to say otherwise. :(

Maybe that was the reason for our bad day. I was feeling it and the daughter in particular was picking up on it. I am the most patient woman on the block. (hehehehe) Today? I was not. I was so impatient. I have felt so much pain.

But at the end of the day? I have my children. ALL of my children. For that I am thankful for. Tomorrow I will be a better mommy.

Thursday, November 11, 2010

I did it!

I'm not overjoyed with this template but I got rid of the pesky watermark.

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!!!