Tuesday, July 25, 2017

She is not her disorder

"Why is little Johnny or Susie doing that? And to simply say it's because he or she has this or that disorder; that it's due to their autism or due to their Down Syndrome or due to their "this or that" doesn't answer the question. Little Johnny or Susie are human beings. They may have a disorder or a set of problems, but they are not the disorder or set of problems. They are human beings with real feelings and real desires and real wishes." – Stanley Greenspan, MD

First of all – thank you.
So many of you have taken the time to make comments and share your good thoughts and prayers for us and for Becca.  Please know that we value every word and prayer.  When we started this adventure we knew we were in for a big job.   What we have found is a monumental task.  We are grateful that there are so many of you – aunts, uncles, grandparents, friends, even a few perfect strangers – who are coming along beside us to help along the way.  This will be the closest I ever come to having a crowd cheer me on as I start a long, hard marathon.  We can feel your support and energy coming from the sidelines, and it is appreciated.

Today was hard.  Rob and I both felt it, and it is a little deflating.  I don’t think we’re losing ground and I don’t think we’ve hit a wall.  I suspect we’re all tired, despite taking the weekend off to focus on resting, and we’ve become accustomed to exciting and motivating bursts of big change.  But if this is our marathon we have to remember that we can’t sprint the entire way.    We have to push forward at a reasonable pace, otherwise we’re all going to fall apart before we reach the finish line.

And thus concludes my one and only sports metaphor.  (You’re welcome.)

At some point I hope to share with you some of the specifics of what we are learning and doing.  The quote above actually speaks quite directly to where we are in this journey.  We are trying to connect with Bex in new ways to help her find her equilibrium and, eventually, her voice. Right now we are still processing things, trying to make sense of what we thought we knew in the face of what seems to be a new set of goals.  In many ways, at least to me, it feels like we took more than a few steps back when we came here.  Becca has emerging skills but they aren’t necessarily built on a solid foundation; right now we are shoring up that foundation and it is painstaking but necessary.  I now see the veil that separated us from Bex not as something to merely push aside when it’s in our way but as a barrier that needs dismantling, and that can only be done once she is working from solid ground.  That’s a much tougher job.

I don’t have anything profound to share tonight.  We are tired but pressing on. I can’t speak for Rob but I’m fighting the urge to check out because oh, it would be so much easier (I won’t, I promise).  There will be lots of these times when we feel like we’re stuck; right now we still have the benefit of experts to help us find our way through. 

In the meantime we will just keep loving our girl, just as she is, because this kid isn’t her disorder and she is pretty amazing already. 



1 comment:

PapaGunn said...