He’s a soul man

A friend asked to meet me at our church on his way home from work. He got off at a time that made it most convenient for me to pick up Joey at his afternoon program and bring him along.

Joey and I got there first and went into a meeting room.

“Joey, do you want to sit down?”

“No.”

He crossed his arms over his chest and walked down the hall to the sanctuary.

My friend arrived right after that. Just as we wrapped up our visit, Joey returned.

The gent got up from his chair, extended his hand to Joey and said, “How are you?”

I almost fainted when Joey reached out, shook hands, looked the guy in the eye and said, “Fine.”

My surprise didn’t end there.

I pulled my car keys out of my pocket and chirped, “Ready to go to Joey’s house?”

“No.”

“What do you want to do?”

“Want to go in the church.”

This blew me away. Joey won’t cooperate with going to church most of the time, and even if we get him there he won’t stay in the worship service; he goes downstairs to plop on a comfy couch.

IMG_20130704_101412_454So I asked, “What do you want to do in the church?,” but he just gave me his cryptic half smile, did the cover-his-ears-to-tune-me-out move, and walked down a long hall and into the sanctuary, which was quiet and dark with the dusk.

I just said “OK” and followed, giving him space.

Once in the sanctuary, he walked around at a relaxed pace. He never sat in a pew; he just ambled up and down the aisles in the peaceful space.

Then he went back out into the hall and toward the exit, ready to head home.

Joey’s spirituality will always be a mystery, I’m sure. He’ll recite some prayers we teach him, and I know that some sacred music reaches him (so do Disney and Broadway tunes, of course), but he’s never going to hold a theological discussion and he never asks “God questions.”

Yet this particular evening he found something pleasant and meaningful in a holy place. Another inner conversation I can’t access, just ponder and appreciate.

For God alone, O my soul, wait in silence,
for my hope is from him. (Psalm 62:5 ESV)

Lights! Camera! Migraine!

Melissa suffers from migraines.

Last night was an awful one. I guess they are all awful, so that comment is lame but I’ll leave it in to amplify the lameness of sitting here at a ridiculous hour blogging.

Joey, with incredible timing, is suddenly all about turning on all kinds of lights at night. So the advice nurse’s counsel to “stay in a dark, quiet room” to soothe the migraine is hard to employ here. I’ve been sitting up in the living room since zero dark something or other, so I can see lights come on down the hall and go turn them off. For the moment, Joey is sleeping and things are dark.

So is my mood.

One of the stinkiest things about care giving is the sleep and even rest deprivation. It is pure torture some nights. For Melissa, the migraine should have been enough, but to throw Joey’s sound and light show in on top of it?

Saturday is going to dawn in the next few hours. Will have to waste a chunk of it trying to snooze. We are having a gorgeous autumn here, and it would be great to go out and enjoy it. But care giving deprives us of freedom and pleasures along with sleep.

We’re still allowed air, food and water, at least for today.

Free Market Autism

“Mr. Monte will fix the computer.”

Thus spake Joey from the hallway. Mr. Monte is a real person. He’s a friend of the family who is an IT professional. And yes, he fixes the aged desktop when Joey works voodoo spells on it.
IMG_20141024_165752_141
Joey uses statements as questions and vice versa, so “Mr. Monte will fix the computer” is the equivalent of turning in an IT work tag on the computer. It means, “Dad, can you call up Monte and get this thing working?”

Of course I first go in, with my lack of skill, and have a look. Lo and behold, I figure out that the frozen cursor in the middle of the screen is the result of the mouse’s cable being tugged loose at the USB port. (I think that’s correct terminology – if you are a tech person, correct any of it in the comments, if you are not, then just behold my awesome ability and marvel at it.)

So I get the problem fixed, puff out my chest and announce, “Joey, dad fixed the computer.”

To which Joey replies,

“No.”

See, he has his business preferences just like any consumer. Some people will buy only the brand of mayonnaise that their mom used to buy, no matter how overpriced. It’s the good one, after all.

And for Joey, the only good computer fix is a Mr. Monte computer fix. So Joey watched videos all evening instead of surfing the internet.

I dream of Joey

Joey was away for a couple of respite nights at a group home. Melissa and I planned to take a trip and visit some friends, but stuff of a maximum suck nature came up at work. So I had to stay closer to the “shop” and its drama and games.

It wasn’t wasted time, thank God. Still got to think through some things, put work in a better perspective, and remember that care giving isn’t always the stinkiest thing in the world. In fact, it can bring some warmth into a cold world. More about that in a bit. It will be dreamy.

sakeHis first night away, Melissa and I went out for sushi and sake. Lots of sake.

The next day, we went to a little girl’s birthday party with a princess theme. Well, pirates, too, but it was mostly girls so piracy was a nod to the few males present. And we weren’t all that swashbuckling but we talked a lot of baseball.princess

Auction to raise funds for a young husband and dad who is losing his sight was our Sunday afternoon. From there we went to pick up Joey.orange me

The three of us enjoyed our little reunion. The group home staff reported that they’d made some won tons and that Joey had consumed most of those. Joey had spent a bit of his activity cash but wouldn’t tell us how. But he was happy to be home and I found myself enjoying the return of his routines (I’ll be whining about them again soon, I’m sure).

OK, I said I’d share about the dreamy stuff. The stress of work kept me up late, thinking through this ‘n’ that. I fell into sleep and Joey showed up in a dream that went like this:

Joey and I arrived near the beach in my Chevy Cobalt. We found a parking lot with a crowd of people who were impressed that it didn’t cost anything to park there. But most of them were bicyclists, lamenting that there were no racks to secure bikes.

My bike was parked there, which makes no sense since Joey and I had arrived in a car. But there it was, and I decided to store it in the Chevy. Which makes no sense because the car is too small.

But in the dream, the seats could flatten out and make the whole interior a storage bay. So I started taking out the beach supplies to make room for the bike. Joey stood alongside the car, clapping his hands and doing autistic stuff.

When I turned around to swing the bike into the car, Joey had put all the beach stuff back in. He was smiling and chortling about it.

So I set the bike down and started taking stuff out, only to find him putting stuff back in.

Thing is, I became happy. The stress of my waking thoughts about work stupidity was displaced by this dream that had me ready to laugh. And Joey was key to that dream.

I suppose the dream has deep meaning that some wise person will bring out.

But for me, it seems that the familiar frustrations of taking care of Joey (even in dream form) can be a sweet and welcome contrast to the vicious crap that supposedly “normal” life can bring.