Current weight: 161.2
I had a revelation earlier today: The hardest thing about PWS is that outsiders don't help you like they should (i.e. not watching as closely, giving extra snacks because they 'feel bad', etc.) and the person with PWS doesn't help you either because they are constantly trying to go behind your back and sneak food. You're the lone person standing at the end of a very heavy tug-o-war rope with the rest of the world on the other end.
We have been having a bit of a rough time lately. We pulled K out of her public school and her dad is now home schooling her (he has his bachelor's degree in education and most of his master's degree at this point). It was getting to where every single day she was coming home with food in her bag or on the bus or we would find out she got into something. A 20 oz Mountain Dew bottle that was mostly empty that she had gotten, of all places, in PE class was the final straw. She had only been in school for about 3 weeks and there were several instances already. We just decided the best course of action for her was to pull her out.
Then today, as I periodically do, I looked under her pillow and around her bed which is where she likes to hide any food wrappers she has managed to get into. I found a wrapper for Ritz crackers with cheese (the sandwich kind) that was 150 calories. She said she got it in my room. Then I search her backpack and find 3 wrappers: One for shredded Parmesan cheese, one for a whole block of Gouda cheese, and the other was a Ziploc baggie with unknown contents as all that was left were crumbs. Now, I know these 3 did not come from me. I have never in my life bought Gouda cheese and I buy my shredded parm in a plastic container, not a bag. So I am thinking maybe these were just left overs from school, but I ask her anyway (something I feel is important to do because I need to know where it comes from so I can make changes) and she said the garbage. Are you kidding me? The f'ing garbage?? So disgusting. Her dad had been having her help by taking out the non-food trash and this is what happened. So now there's another thing to change.
Things around here with her have been really tough lately and as a family we're in a little bit of a difficult place with her. I am hoping things get better soon because living like this is really not fun.
Friday, September 28, 2012
Monday, September 17, 2012
Why don't they listen?
Current weight: Unsure
Why do people not listen or think they know better when you tell them how they have to deal with someone who has PWS? Don't they understand that no one knows better than family members what that person needs, how they act, how sneaky they are, etc.?
I am at the point where I want to rip out my hair out of sheer frustration at the whole situation. K's new school started out fine (as it always does) but then she gets comfortable, starts to see consistent areas where she can exploit and get food. This past week, we already had 3 instances of food issues. THREE. In one week. I am just so tired and so frustrated. I don't know how to continue living with the stress of this. It is too much to home school her because she is just so difficult, but sending her to school is equally bad. There is no winning in this situation.
I need to get going on all her paperwork and fast. I need to have a plan for the future in place. Right now everything feels so up in the air and that combined with my frustration is just a bad situation to be in.
Why do people not listen or think they know better when you tell them how they have to deal with someone who has PWS? Don't they understand that no one knows better than family members what that person needs, how they act, how sneaky they are, etc.?
I am at the point where I want to rip out my hair out of sheer frustration at the whole situation. K's new school started out fine (as it always does) but then she gets comfortable, starts to see consistent areas where she can exploit and get food. This past week, we already had 3 instances of food issues. THREE. In one week. I am just so tired and so frustrated. I don't know how to continue living with the stress of this. It is too much to home school her because she is just so difficult, but sending her to school is equally bad. There is no winning in this situation.
I need to get going on all her paperwork and fast. I need to have a plan for the future in place. Right now everything feels so up in the air and that combined with my frustration is just a bad situation to be in.
Thursday, September 13, 2012
Challenges
Current weight: 161.2
Weight lost: 14.8
While K has lost quite a bit of weight and I am proud of that, there are so many challenges that just crop up with PWS. You get into a routine, you think everything is going fine and then BAM! You discover something that makes you change everything about what you were doing. This is how it always happens in our house with PWS. Seriously, it's almost something I can count on.
Today while I was changing the sheets on K's bed, I discovered a pile of wrappers of food she had collected from various places around the house, eaten, and stashed the wrappers. I was surprised and not surprised at the same time. We shop at Costco and since the girls moved in with us, we had to squeeze everyone in our apartment and so have had to go from storing our Costco foods in my office (now K's sister's room) to our bedroom. There is no room in the kitchen or pantry. So, we put them up super high thinking there was no way she could reach them. Unfortunately we were wrong. So I think the plan at this point is to go buy a door handle with a lock and key and swap out our doors. Also, her sister is going to have to keep her back pack in the kitchen or our locking bedroom from now on since she can't seem to remember to get the food out of it before K goes in her room and searches through her stuff for food. I was wondering why with the extra activity of having 2 PE classes at school her weight loss had significantly slowed. I guess now I know.
I am so very frustrated and tired and it can be so incredibly difficult from day to day. Of course I will march on because that it was I have to do, but today is just a day where I feel down.
Weight lost: 14.8
While K has lost quite a bit of weight and I am proud of that, there are so many challenges that just crop up with PWS. You get into a routine, you think everything is going fine and then BAM! You discover something that makes you change everything about what you were doing. This is how it always happens in our house with PWS. Seriously, it's almost something I can count on.
Today while I was changing the sheets on K's bed, I discovered a pile of wrappers of food she had collected from various places around the house, eaten, and stashed the wrappers. I was surprised and not surprised at the same time. We shop at Costco and since the girls moved in with us, we had to squeeze everyone in our apartment and so have had to go from storing our Costco foods in my office (now K's sister's room) to our bedroom. There is no room in the kitchen or pantry. So, we put them up super high thinking there was no way she could reach them. Unfortunately we were wrong. So I think the plan at this point is to go buy a door handle with a lock and key and swap out our doors. Also, her sister is going to have to keep her back pack in the kitchen or our locking bedroom from now on since she can't seem to remember to get the food out of it before K goes in her room and searches through her stuff for food. I was wondering why with the extra activity of having 2 PE classes at school her weight loss had significantly slowed. I guess now I know.
I am so very frustrated and tired and it can be so incredibly difficult from day to day. Of course I will march on because that it was I have to do, but today is just a day where I feel down.
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