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.
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.
Home.Sweet.Home.
We were both very ready to experience that!
The harvest is unfortunately plenty.
The workers?
All too few.
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