Saturday, July 19, 2014

LaLaLa....I Can't Hear You!

"Talk Bailey.  TALK.  That's why we are here...." But she wouldn't.  Or couldn't....And no amount of nudging or prompting was going to work.


Bailey is 18 now....So, technically I didn't even need to be in the room today. almost every way....Bailey is not 18.  She still needs me there.  Asking questions and advocating for her needs.

I'm not sure if it's a coping mechanism...Or just the way Bailey is wired.  She RARELY speaks when we are at the hospital....Even when doctors TRY to engage her, she often just "unplugs" and drifts off to....somewhere.  But, get her in the car afterwards....and she's back.

I never shame her for this...Because this is who she is and trying to force or move her into being more "normal" would be a futile effort anyway.

Life with Aspergers is complicated.  Life with Neurofibromatosis AND Aspergers, even more so.

Is it the learning disability that is making it so the Aspergers is more noticeable....?  Probably so.  At least in OUR CASE.

Call it an inability to cope....Lack of understanding....Or a combination....Bailey definitely knows about her medical issues...But as you can see from a very dusty blog of hers (BLOG)....She doesn't like to talk about it....or write.

While it may frustrate me - That my daughter, whose mother could talk all day about the drama of our very busy life...I get it.  If I were Bailey....I'd probably want to UNPLUG too.  The drama and seriousness takes MY breath away....I can't imagine what it would be like being 18, dealing with all that Bailey has on her plate.

If you ask Bailey if she's HAPPY.....She will smile and tell you "Duh...Of Course!"

So ... I guess THAT'S what matters!


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