Thursday, September 13, 2012

PWS Sucks Kinda Day

Yesterday was just one of those days.  It was one of those days where, as a parent you do what you can, but you mostly you just have to watch what PWS does to your kid.

I'll try to explain what I think is going on.  We have been back to school and all our therapies.  The other kids are back in school, Gary is (thankfully) getting a bit more work.  Soccer has started back and schedules are packed for everyone.

Ayden Jane has needed some of this and took to it all with tons of excitement and the energy that came bounding out was, well just read back a few posts... LOL.  She has been craving all things big muscle and fighting sleep with all her being.

So the stage is set.  Yesterday brought OT before school, school and then PT after school.  Ayden Jane flipped out before school because she could not ride with Daddy to take Mckenna to school.  (She would not have had time for any breakfast before her day was under way)  Crisis one settled and off we went.  During PT, she was a bit goofy and avoiding some things...  Then she nearly fell from the rocker board.  Okay, for this kid to nearly fall is nothing new and typically she could care less.  Panic took over for a moment.  Jen was surprised as she does not ever get to see this side of AJ.  (as most kids do, she saves these treats for us parents)

After a snack and nap I thought we were in the clear.  Not so much.  Gary and AJ took the dogs to the field.  She LOVES to do this.  It is the local HS football field and Ayden Jane usually runs around with the dogs, rides a scooter or bike around the track...  Last night she was determined to carry her bike (2 wheeler with training wheels) up to the top of the bleachers and ride it down.  Ya think she is craving some deep input to her muscles, maybe???  She melted into an irrational puddle because Daddy wouldn't let her.

Gary came in and passed her to me with these words, "I hate what this stupid syndrome does to her."  He was angry and heart broken all in one.  Her behavior was unreasonable and she was truly not in control.  All she knew is that somehow carrying that bike up and riding down is what she NEEDED to do and Daddy said no.  She couldn't reason.  She couldn't understand why it was unsafe because she couldn't use that amazing little brain of hers at all.  All she could do was scream and plead to do something he could not let her do.

In the end, I believe that she has had too much of too many great things.  She just is not able to process all the stuff coming in and her little system is just overwhelmed.  She is exhausted and 'strung out'  She is stuttering something awful.

We took today off from school to lay low... We are going to go back to joint compressions and massages and maybe brushing.  We will work through this like we do everything else.  We will be creative, we will win, but that doesn't mean that there will be no more days where we "hate what this stupid syndrome does to Ayden Jane."


  1. Ugh, so hard. It's clear even from your description that AJ was not in control of everything going on. Hoping you can find the right combination of this and that that will settle her back into her wonderful self. (As an aside, have you tried weighted vests and stuff? I feel like we've talked about this... oh, and does she like to be smooshed? When I feel crazy, I literally have Bob lay on me and smoosh me. It's weird, but it works :)).

  2. Yep. Lots of big brother wrestling, taco rolling in a blanket, big squeezes (she is getting strong!!) The best therapy still seems to be tonight's rough ocean and being pounded repeatedly by the waves. Of course followed by rolling in the sand, asking to be buried, sand angels...

  3. This post made me cry this morning for Ayden Jane. I could just see it all happening as you were describing it, and I know so well that cry of frustration and worse, emotional pain, because she just doesn't understand the WHY of it. I am so sorry.