Tuesday, May 1, 2012

No Man's Land

Every once in a while I get caught in 'no man's land'.  Basically, to other people Ayden Jane looks great.  She is full of personality and seems like a pretty typical 4 year old.  All things we have worked very hard for!!  All great things!!! All positive!!!  So, I should be constantly over the moon celebrating all the daily victories.

Only, I'm not.

Part of what gets you to the point of doing really well is looking for all the things you can/need to work on.  Seeing all the shortcomings.  Then sorting through which things are just typical 4 year old things, which things are Ayden Jane things and which things are PWS things.  Of the PWS things, then it's trying to figure out which ones are 'fixable' and how to go about it without over doing it....  Tracking food and how it affects.  Tracking supplements and changes you think you can attribute to them.  AAAAAHHHHHH!!!  Feels a bit like constantly monitoring a science experiment.

So, how do you deal with the inherent pressure of all this stuff weighing on you?  Chat with your neighbor?  Oh, no, they aren't dealing with any of this.  In fact, to most people I would sound crazy!  You give your kid what?  Why do you give her that?  (well, meaning of course)  Then any real answer will just glaze over their eyes.  How about checking in with other special needs moms in the area.  Oh, wait.  Ayden Jane doesn't look/act special needs.  She is not even in a special needs classroom.  We don't really fit there.

That leaves online.  There is a great PWS community online.  It is the best family I never asked for, but I have to say, there are a lot of times that an online post is not really cutting it.  I do love hearing about how all the other kids are doing.  It is fun to relive the pure joy of Ayden Jane's first steps with those that are experiencing them now.  Each milestone is so extra awesome because it was so hard fought for and won.

Well, guess that is no conclusion so here are a couple of pictures.  The first is what happens when Ayden Jane spends 2 days on a soccer field!  She was hilarious.  It was time to nap and she did not want to be in the 'itchy grass'.

This one was tonight.  After horses we stopped by a playground we don't go to often.  Ayden Jane loved climbing up this rock wall, over the top and then down the slide again.  I was not allowed to stand near the wall because she could "do it myself".  (Just ignore the random people helping their kids)



  1. Janet, "special needs" means what it means : it means that AJ has needs that a typical child does not need in order to be able to live. Her diet is a need that a typical child does not have, her supplements is a need that a typical child does not have.
    So yes, AJ is a child with special needs.
    Whatever she looks/act as a child with special needs does not change the fact that yes, she has special needs.
    And even if she is not in a special needs classroom because she can handle it does not make you less a mom whom the child has special needs.
    Like in every group, you will have affinities with some persons and not with others. You just need to find the right persons, because it's more a question of persons than a question of special needs or not.

  2. I don't like itchy grass either. :)

    I just want to say that even though the PWS journey is a little different for you, I'm so glad that you keep sharing. I learn a lot from you guys and care about you as friends and so it's good to hear. I think no matter what degree this syndrome affects our kids, it's significant. If we didn't love them so darn much, it wouldn't matter as much.