Hot-Wheeling in Holland or Wherever We Are.

I came across this quote I had scribbled on a piece of newspaper but I can't seem to find where I found it or who it's written by.  I wish I could say I wrote it myself, but I didn't.  I Googled and Googled and found nothing.  If anyone knows, please advise.  

"...thankful for these walls.  These walls that contain my unpredictable, crazy, sometimes messy, lovely life."  

As you may have noticed, many of my posts contain within or end, with my desperate attempts to find the lovely parts of life.  Just so you know, I'm not this positive person always looking on the bright side of things.  In fact, many times I'm quite the opposite, clinging to a string of hope I hold loosely in my sweaty hands.  Trying to shed a coat of bitterness I wear year-round.  I'm always trying to make sure that no one thinks I'm feeling sorry for myself.  And I don't want others to feel sorry for me.  

As Penny, fellow blogger with a son who has the same dual diagnosis of Williams Syndrome and autism that Louie has, commented on my last post, we just don't know where the WS stops and the autism begins.  I am in the process of preparing myself for the possibility Louie will never talk.  I had a dream he spoke last night.  Don't remember much of it.  Don't know what he said.  Just that he spoke. Leaving me today with a formidable, raw feeling of hope and dread and awe and realization.  

Most parents who have a child with special needs have read the poem Welcome to Holland, an apt metaphor.  But I'm not in Holland.  I know the name of Holland.  I'm pretty sure I could locate it on the map.  In the very least, I could find the coordinates.  My family has been uprooted and placed somewhere far, far away from coordinates.  The land where those people live that you spend most of your life thinking, oh that only happens to other people.  Until it goes and happens to you.  Special needs? Huh? Williams Syndrome?  What? Who?  Who is William?  Autism?  Mentally what?  

I don't know this terrain; I am not familiar with its climate.  I'm lost and there is no map. I don't know the rules and they're not posted anywhere.  I have no idea if this place will mend my soul or shrink it and shrivel it to the size of a raisin.  I hope not.  I think that's up to me. Because the one thing I do know about where I live now is that we are at war here.  At war with ourselves.  An odd war, because you're fighting to find the fight within you; enough to fight for yourself and your child.  To navigate the turns and bandage your wounds.  And somehow surrender to or conquer the Battle of Shock and Darkness.  You know many who live here. Sometimes I wonder if it's not a faraway place after all; not Holland, not Italy.  Or the United States.  Just here.  In the world.  In which we live.

Speaking of battles, we had one with Louie a few weekends ago.  After a year with that walker, Louie decided he would use it.  Use it and abuse it.  Rockin' and rollin', hot-wheeling around, turning on a dime, backing up, maneuvering corners.  You get it. The kid knows how it works and uses it everyday to walk into and out of school.  On grass, pine bark, whatever; his own gold-plated ATV.  Like I said, he's mastered it.  

Big test...a public place.  An errand.  We chose Office Depot for its small customer size, wide aisles and because we only had one or two things to get.  Quick trip.  Chris takes Ace off to get aforementioned items while I cruise the aisles with Louie.  Doing well.  A little distracted by the automatic opening and closing doors.  Moving on.  He stops and looks at highlighters.  Further down, he is drawn to some shiny display of leather planners.  Then, for whatever reason, he decides he done walking.  Drops to his knees and starts the "eeeeeeeeeeee" cry.  You can't see it in the above photo, but there is a belt and so he was strapped in and couldn't get out.  He could only, as he did, fall to his knees and cry in protest.

Okay, this is where you may not understand what I did.  Much we do as parents, special needs or not, disciplining, teaching, etc., can be done in a vastly different number of ways.  A method that works well with children with autism and a method we practice often is based on some of the principles of ABA, or behavioral therapy.  Ignore the undesired actions; praise the desired actions.  So, I walk away.  I can still see him obviously but I pretend to be looking at file folders. I had to win this one.  If I let him out of his walker and carried him, it was he who took the gold (sorry, the Olympics having just been on and all).  

We have to stop just to laugh.  I can do this now.  Now that it's over.  Okay, so one thing we didn't consider was that this was the before school tax-free weekend.  Everywhere that sold stuff was busy.  Even Office Depot.  Can you imagine what people are thinking when they see this whole scenario?  This poor child strapped in a walker, on his knees, crying and pleading wit his eyes to unleash him from the metal torture device.  And here, I, the mother, have walked away?  

Chris told the story to someone the other day and noticed a part of the story that I'd already repressed.  How I loudly announced to everyone checking out that Louie was perfectly capable of walking in his walker and this was his first outing to a store and I had to win this battle.  But, you should know, that as I was saying this, I was WALKING out with Louie, still crying, but nevertheless, walking in his walker.  We have since been to a number of other stores and restaurants and he has been walking in his walker, independently and almost, maybe, with a sense of pride?  

Whoever "they" are, again, I quote another nameless author, they say that life is the toughest teacher for it makes us take the test first and then teaches us the lesson.  I can buy that for now. I can wait for my lessons.  I just hope I'm not graded too harshly on the tests.