Tuesday, January 25, 2011

Living Inside A Bubble Named Autism

This morning I almost missed one of my midterms.  Part of it was an honest mistake.  About half the students (my small Creative Writing class) had conflicts and were making the test up this afternoon, so somewhere along the way my brain flipped the actual time to then. Add to that my usual three AM fatigue, exacerbated by our kids' sickness-wacked sleeping schedules...

You get the idea.  Luckily for me I'd planned on getting in early.  I was dressed, heading out the door when our secretary called and asked, "Where are you? Your midterm starts in ten minutes!"

Anyway.  This seems to be a running theme in our lives, one that's grown more and more prevalent over the past few years.  Some of it - like this morning's SNAFU - is just part of having little kids, I think (though none of my fellow teachers has kids the same age as mine, so I've nothing to compare). 

A large part of it, however, has to do with Zack's autism and Madi's sensory issues (though that has decreased radically in influence over the past year).  Essentially: Abby and I live inside a little bubble called "Autism".  Even as high functioning as Zack is, even with the great strides he's made: his autism dictates our life.


We run a very regimented, scheduled ship around our house.  Those of you who grew up with me must find that strange.  How unusual, even unnatural that is for me, of all people (though in many ways it's been good for me, too).  However, it hasn't been by choice.  It's been to survive.   Our daily and weekend schedule is dictated by wake up times, breakfast, lunches, naps, dinners, bath times, and bedtimes.  

Zack and Madi are up at 6 AM.  Without fail.  Sometimes they'll go through streaks where they wake as early as 5:30. This results in me literally picking them up (not Madi anymore), screaming and crying, and making them lay in bed until 6 AM, for fear they'll start getting up earlier and earlier and earlier.

We have to decline family events simply because they've been scheduled during Zack's nap, because without one...he's still virtually uncontrollable.  When he wasn't sleeping at the beginning of the year, Abby and I couldn't go out at all, because it was hell for whichever poor babysitter we left in charge.

He won't sleep in a strange environment without Abby.  So that eliminates or complicates any possibilities of traveling overnight as a family.  Even going up to the Adirondacks, it takes Zack several days to adjust.  Our first several trips there with him were NIGHTMARES. 

Zack is also rapidly developing an increased awareness of his surroundings - which is a good thing -  but is also a troublesome thing.  

We must do things in a very precise order, now.  He must do things in a precise order.  One little hitch, anything different or out of place, a door open when he wants it closed, if he doesn't get to engage in an activity for a preferenced length of time, and he rockets from cute to screeching in zero to ten seconds.

Certain videos he can't watch.  Most kids this age lock into books or movies they want to read or watch over and over.  Madi - in a very normal way - loves The Lorax (Dr. Suess) and Free Willy.  Zack, however, is obsessive.  We have a complex book-rotating system for nap and bedtime that involves literally hiding books from his sight because if not, he WILL throw a fit if not allowed to read the same book over and over.  Certain videos take over his life, his expression....almost his very being, until he's nothing but a walking voicebox for said movie: its lines, theme song, everything.

And not in a cute, "Oh look how smart he is!" sort of way.  More like he's an empty, robotic vessel that will take on the attributes of whatever fills him up.  Tom & Jerry is catastrophic.  Thirty minutes of that movie and he's literally uncontrollable for the rest of the day.

In many ways, this has shaped the bulk of my attitudes regarding politics and the Church and religion and just about everything else.   Now, honestly - politics annoys me on an average day.  Most of the posturing (by everyone) and rhetoric makes me sick and depressed and sometimes sad to be a human.  

Same thing with all the splinter attitudes within and without the church regarding faith, the Holy Mother Mary, and whether or not rock music is evil. There's a reason why folks have always warned: "Never talk politics or religion in a bar."

But Zack's condition and the bubble it's encased Abby and I in has crystallized my feelings regarding these issues.  Far as I'm concerned, almost NO politician has anything to say I'm interested in hearing.  They're all self-involved puppets or figureheads or talking heads or demagogues that have very little in common with me or my family.

"But wait!" you say. "Sarah Palin's son Trig has Downs! And she's a regular mom, a regular person just like you and me!!"


You think she has a hard time getting services for her son?  Finding a caregiver?  Advocating five or six times a year at CSE meetings?  Affording special equipment to meet her son's needs?

I highly doubt it.

I have just as little patience for the Church.  I've made no secret of my faith and my beliefs, and what we've endured the last few years and how God has provided for us has only strengthened my faith, in many ways.  It's also solidified my bond with Abby - because to survive this, to prosper, we need to be on the same page, working together, side-by-side.

But I have little patience for the Church or the religious leaders of the day or this new guy or that new theologian or this new firebrand to tell me how to live my life. To tell me how I'm supposed to treat others or what I'm supposed to believe.   I just have no patience for it.

Or the energy.

Because we live inside this bubble called Autism. And we've been very blessed to enjoy the kind of life we have.  Many folks have it much worse.  I'm lucky - blessed - to write as much as I do.  And things are getting better.

But, a secret?

I kinda....like it, almost.  Why?

Because I have a very short list of things that matter to me.  They are:

1. My family: Abby, Madison, Zack
2. Providing for them
3. How God has supported and provided for us when we've had nothing
4. My writing life  
5. And the few friends I have at work and through writing

And that's all.  So you see, I don't dismiss politics and religious matters and things like that because I'm apathetic. 

I dismiss them because I have more important things to tend to.

Like my life.