Sunday, June 22, 2014

Oh what a weekend....

Can I be honest with ya? I am, not tired, TIRED! Worn out! On average we have PWS issues pretty much on an even keel. That isn't to say we do not have daily issues but they are manageable. Sometimes when things are too calm...I get nervous and them WHAM, we get hit by the Prader-Willi Syndrome truck. It normally happens after things have just been going along way too well and uneventful. I'm not talking about a little issue but every few months it will hit us big time.

As my hubby said in a blog he did a couple of months ago, most of our son's issues center around impulse control. He doesn't...maybe he can't (at times) think of what a dangerous consequence some of his actions may cause. Yesterday he heard us talking about a little girl with PWS that was in the hospital because of ingesting something she shouldn't have and she was very sick. I think it scared him and he went into confession mode and brought us an empty bottle of medicine. We lock up medicine and a few weeks ago I went through the lock box and threw away expired medicine and medicine we no longer use. I put it quite a ways in the garbage with stuff on top but I think that is where he must have gotten it. His story kept changing. We tore his room apart looking for the pills and he ended up bringing most of them to us that he had in a baggy but we still called poison control. Fortunately it wasn't a dangerous med but one for reflux.

Last night things spiraled into a really horrible meltdown. He feels guilt of some sort after the fact. Not sure if it guilt that he did it or that he got caught.

If anyone out there might be thinking "gosh they do not watch their child very well". Literally except when he is asleep (and we have a hall alarm) one of us has our eyes on him....except when he is using the restroom but we know when he comes and goes. Even though my son seems so loud...always talking, when he wants to be quiet and sneaky he will find a way! 

After the storm of an event like this his behavior gets bad with continuous meltdowns. He is normally a very calm happy go lucky young man. He is truly the funniest person I have ever met. (and let me tell hubby is FUNNY!) Today I stood eye to eye with him (he's almost as tall as I am) and he looked so full of rage and anger that it scared me. (BTW it's best to give someone with PWS in a meltdown some physical space and time to cool down) I'm looking forward to things calming down around here. I've already done the mama guilt thing so I do not need anymore as I know that I do my very best.....but sometimes I lose my super-hero cape and things slide past me. Us special needs mamas (and daddies and siblings) have a lot to deal with, a lot. We learn from our mistakes and move on....


Found these cute photos on my camera that my bug and critter luvin' girl took

This week will be a busy one. Last week Z~girl started a theater camp and is LOVING it! They learned some skits and will be performing them at libraries around our county. It has been so good for her. Despite the fact that she is a introvert like I am she LOVES to be on stage. When she was much younger she was in several plays and loves playing her fiddle/violin for an audience. I cannot wait to see the performance.

She is in the middle of an online writing class ( and A~man is finishing up an online reading program. ( We will be keeping plenty busy with that so we may only have extra time for doing some reading and some educational songs for A~man. Next weekend we will be traveling for a day trip to go to our first PWS conference and I am very excited to meet some old friends and some new ones too that share our journey!

1 comment:

  1. Oh my goodness! I'm so sorry that you guys had a rough week! :( Hugs to you guys...