Life with Autism

Friday, October 4, 2013

Experiencing God through Pictures...

 Much like Brandon was staring at me in the picture above that I took yesterday, I've been staring at a blank page, blank computer screen, and blank air all week in searching for where God is working so that I could join him there.  That's what the Bible study I'm doing is all about....  Experiencing God.  Knowing and Doing the will of God.  Seeing where he is working and joining him there in that work.

That's been tough to blend in with a life of autism advocacy.  I see Pharma at work, I see a corrupt medical system at work, I see woefully inadequate service agencies at work. I see insurance coverage that doesn't work for us.  I see few opportunities for recreation, respite, and meaningful work for our kids - at work.  I see an uncertain future for our adults with autism at work.  In fact, for there to be appropriate places for them to live and be cared for once I'm dead -- at work -- someone should have been at work on that over a decade ago.

So you see my dilemma. 

But like Brandon, I just keep staring.  Searching.

These pictures were taken in a neurology specialist's office.  I left my house at 1:30pm and didn't return until 7:30pm.  I remember after the first hour waiting in that office - out of the blue asking God, "So....where are you at work as I'm in this wretched place yet again?  Spending a wretched amount of time to get nothing wretchedly accomplished yet wretchedly again?  How can I experience you here?"

Probably nothing with that attitude...

I'm sure I single-handedly keep God laughing and shaking his head at my wretchedness.

But in all honesty, I'm wretchedly tired of it all.  The hurry up and wait for nothing medical system that is "Life with Autism."  Hurry up and get there early so you can sit there and wait for no help...  As I was trying to give myself an attitude adjustment, I looked down and saw Brandon with the sweetest expression.  He's the one who has it hard, yet I was the one complaining.  He was sitting there, still, something that is not in him to do, and I was the one pacing like a caged animal.  
Through each weeks study of Experiencing God, it talks about  how we are to be looking to see where God is at work and joining him there.  So often I get so very bummed out because I see other places where he is at work, where I would like to join him, but I'm rarely able to.  Plans thwarted by seizures.  The 24/7 demands of autism.   I desire so greatly to serve God, yet so often feel I can't.  Which often leaves me feeling like I'm not experiencing anything at all.  I so want to be able to go to class on a Sunday night and share this big grand story of where I saw God at work and joined him and the hugest of miracles that occurred in doing that.  I desire that grand story so much sometimes that I often overlook the smaller yet just as grand stories of where he has been at work all along, and where I was joining him but didn't realize it. 
Like in being a mother, a guardian, an advocate to this sweet boy in a young man's body.  In how in the midst of chaos to him -- being in those medical centers for hours over the course of two days -- I was able to experience God by capturing these miracles of pictures.  Miracles to us at least.  Others with typical children can get many such pictures.  But not me.  When I share a picture of Brandon, it's not that I searched through all my good ones to find the best one.  It's that by grace of God I was able to get just one that shows Brandon more than his autism. And like here, when I have all these, oh my goodness.  I can't describe this feeling.

Like most everything, I'm a slow learner.  I wasn't seeing God in anything in that doctors office until I decided to simply enjoy Brandon.  In between bouts of where he was getting tired of it all, he was ever so sweet and I wasn't going to miss these rare opportunities to capture him in picture.  Even while all the doctors were in there asking me question upon question, I kept clicking the camera hoping one picture would capture a grand miracle I so desired to be able to share about.
The past two days have had the added benefit of being personally empowering.  Typically at the medical center and around specialists, I feel at their mercy.  Held hostage by their rules, their ways, their expertise.  But no more.  I no longer felt that way.  At one point the fancy specialist asked if I would turn off Brandon's music.  He won't wear headphones so I have my iPhone playing softly, yet where everyone can hear it.  I simply replied that Brandon is calmer with his music and that this appointment is about helping him, not appeasing her.  She would have to adjust for once.  Not Brandon. 
As we waited in the valet parking area for them to bring our ride home, for a moment I was again wretchedly distracted by a woman about my age who was getting off work.  She walked out the door, took off her name badge and perfectly ironed jacket that matched her perfectly ironed (non-Camo I might add) pants and started walking in her perfectly polished high-heeled shoes down the street I guess to where her car was.  It was a beautiful evening, the breeze was blowing through the trees and for an instant I was wretchedly jealous of her most likely non-autism typical life.  She worked her eight or so hours and now was free to enjoy the evening.  Maybe stop somewhere for coffee with friends, maybe go jogging as I saw so many people do on the way home.  She could go shopping, to the market, go out to eat.  Her choices were relatively endless.  My choices always centered around the limitation of life with autism.  I put in my eight hours before I even left for the medical center.  Nearly put in another eight while there.  Then when my car came, I would have to put in another eight or so before Brandon goes to sleep.

She was relatively free to see where God was at work around her and join him there.  The food pantry, church volunteer project, whatever.  But even in that, God still had something for me to experience, even if it had nothing to do with joining in a work. On the ride home in rush-hour traffic, I had more opportunities to witness, and safely capture, Brandon's sweetness. 

His excitement at finally getting to go home...

His discovery of how the wind feels against his face while looking out the window.
And finally....


We were both very ready to experience that!

Through spending these past few days at the medical center with my son, I not only had the miracle of experiencing a side of him I rarely get to see --- but I had the added blessing of realizing how I have been Experiencing God all along, through Brandon.  In the way the author of Experiencing God had anticipated?  Probably not.  But if I can come away from the medical center and think I've Experienced God through pictures, then perhaps I've indeed joined in a small piece of a work he was doing. 

Oh how I wish others would look really hard to see how God is working in the lives of those who have autism and want to join in and experience those blessings and miracles too....
The harvest is unfortunately plenty.

The workers?

All too few.

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