Saturday, May 10, 2014

A Day in the Life

Ayden Jane is on a bit of a roller coaster these days.  Not sure what is causing it, or if it is temporary or permanent or ....

Here is a full circle day in the life...  Last night she wet the bed.  Not a big deal, she is not that old for that and in PWS it is common for it to be later.  Darn endocrinology.  She had to shower.  OCD means she had to wash every part and was up a good while.  Then she had to have certain pj's and pushed back and argued with Gary enough that it ended in a tantrum and tears.  Back to sleep eventually.

Woke up early as usual and chipper as the day is long.  Played happily with her toys in the living room, so Mckenna could sleep in (after breakfast of course).  She was all excited to go to Walmart with me and help with the grocery shopping.  She wrote a list to bring and was hysterical along the way.  We got there and all was well.  She was as happy as a clam and very helpful.  Then it started.  ________ is on my list (nope, but we got it anyway.)  Again and again until we said, "no."  We are not getting those.  It was a simple request, but it represented the line in the sand.

She couldn't deal with it and I took her out front.  Gary was with us so he finished and checked out.  As she sat on the bench and we talked through it she cried.  Not a tantrum angry, frustrated, spoiled kid cry.  A heart broken, quiet cry.  I told her, "the answer is 'no' and you have to accept that.  Part of being a big kid is learning that sometimes the answer is 'no' and you have to deal with that or you will not be able to go and do things.  You have to be able to let it go and move on.'  She said, "I understand what you are saying in my head but it still hurts my heart.  I want to 'move on' but I can't get it out of my head.  I'm stuck."

There it is.  PWS.  Stuck.

She did move on.  Finally.  I asked her about Mother's Day and what we should get Grandma.  I had tried telling her she needed to calm down so we could get her Popsicles for school, but that wasn't the motivation she needed.  Nothing for her would unstick her.  The giant hurt heart could only move on by doing something nice for Grandma.

We came home and had a nice afternoon.  Then Kayla took her to a friends house that she was babysitting.  The word 'no' came up on a food issue.  Kayla called and I had to talk Ayden Jane through it.  Again, if you can't handle 'no' than you can't go.

She tries so hard.  She wants to make the right choice.  She wants to listen.  She wants to be free of getting stuck.  I know that she will manage.  It will be harder for her than everyone else but she will do all she can to conquer this and she will succeed.  For right now though, it just sucks to watch her go through it and I hate the effect it has on everyone else.  They are all tired of fighting with her...

1 comment:

  1. I don't suffer from PWS, but this post sounds sooooo familiar ! I suffer from TBI by anoxia at birth and boy, do we deal with such a situation of sticky thinking !

    FWIW, and only from my point of view, relying on willpower to get unstuck has very limited effects, it can even make sticky thinking worse.
    Think about "don't think about a white elephant" and what comes in your mind ? Yes, a white elephant !
    Sticky thinking is the same process at a more potent degree.

    With sticky thinking, it's like you can only see the door closed. In a similar situation, I am unable to see that "the green door is closed, but the blue door is open". It is a cognitive effort requiring clear thinking, and sticky thinking is not thinking clearly at all.
    For this very reason, threats like "if you do X, Y will happen" don't work with me at all because it requires to me a cognitive effort to understand beyond the "you do X, Y will happen". The notion "if" needs a layer of cognitive complexity I cannot use when stuck.
    What helps is being very explicit that "the green door is closed, but the blue door and the yellow door are opened".
    To me, the word "no" can be a trigger for sticky thinking because the open doors are too implicit to see them in the middle of a crisis : I have narrowed down what I can think about because of being too overwhelmed.

    What can help to deal with "no" is providing explicit open doors, because AJ will not see them like a typical brain will do.
    Suppose you say "no" to a food choice because it's not the moment or because it's beyond the calories she is allowed. You can say "no" to a food choice, but you can provide either a substitute to the food choice/moment, either a non food substitute (it does not need to be expensive at all).
    You give up a very tiny part of control to keep the situation in control. You don't give up your absolute requirement, but you help AJ deal with "no" with specific tools the same way a wheelchair helps someone with paraplegia to move.

    Sticky thinking and IQ are completely independent to one another.

    Take care