Don’t resolve too hard

Happy New Year.

I’m not a big resolutions guy. Care giving calls forth plenty of failure, correction and change all year long, so the arbitrary flip of another calendar page doesn’t strike me as an emergency.

The other thing about resolutions is that they can get us so focused on some arbitrarily selected effort, often suggested by cultural pressure or vague inner shame, that we beat ourselves up emotionally. As if we didn’t have a surplus of that layin’ around.

The challenges and opportunities for growth will be around all year long. They won’t ask us for a date on December 31st. So we need to be in a strong place when they show up. And we do that, not by resolving to “be in a strong place,” but by accepting the help that can keep us there.

That help is called “grace,” which comes as a gift,

Grace is God’s favor toward us, unearned and
undeserved; by grace God forgives our sins, enlightens
our minds, stirs our hearts, and strengthens our wills.
(Book of Common Prayer 1979)

Can it really be that simple? No, it is elusive. But we receive the gift by taking the risk to trust that it is really there, right with us, all the time.

A man named Lawrence, who spent a good part of his life cleaning the pots and pans for the people with whom he lived, put it this way,

“Blind as we are, we hinder GOD, and stop the current of His graces. But when He finds a soul penetrated with a lively faith, He pours into it His graces and favors plentifully: there they flow like a torrent, which, after being forcibly stopped against its ordinary course, when it has found a passage, spreads itself with impetuosity and abundance.”

I pray that 2014 – and every moment of your life – will be a discovery of grace. May your life be filled more and more with the patient, passionate and powerful love that God devotes to you.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. (2 Corinthians 12:9, ESV)

Dad stuff (or, Why I’ll Never be Steve McQueen)

The Huffington Post religion blog (yeah, I’m an eclectic and broad minded reader ‘n’ stuff) had an article on St. Joseph, upon whom we might look as the patron of care givers. God, no less, gave the guy an unwelcome job with a high degree of difficulty, plenty of room for failure, and minimal social support. But Joseph took it on, and the child entrusted to his provision and protection “increased in wisdom and in stature and in favor with God and man. (Luke 2:52).

Joseph eventually disappeared from the narratives of Jesus’ life. There’s no explanation, but life spans were short in those days and it’s most likely that he died. Some opine that he just gave up and bailed, but the references to his character and actions that we do have make that very unlikely.

The HuffPo article presents an intriguing idea,

“Often overlooked is the fact that Joseph embodies a brand of manhood that is alien in our fallen world where power, wealth, social status and even physique are the gold standards for ranking men.”

For a dad, care giving is an experience in powerlessness. You can’t just raise your voice or use your size to get things done. You have to choose words and tone in ways that feel unnatural. You have to finesse situations that cry out for abrupt action. And most of all, you can’t fix the situation.

Some care giving dads make big money and others not so much. That depends on what career you brought into the gig. I’m pretty certain that none of us get richer by being care givers, and some probably lose ground financially through the costs of care and by losing social contacts and hours available to progress professionally.

Social status? Please. Guys have this thing about sperm. “He’s a girl-maker” is a put down of guys who don’t sire sons; you can imagine the implications of contributing DNA that is manifestly defective. And of course there’s the lurking social assumption that your special needs kid is just evidence of your crappy parenting (although that’s more often blamed on moms when it comes to autism, which used to be called “cold mothering syndrome” or something like that).

Physique? You lose time for preparing and even eating healthy food. You grab fast food or whatever you can find that doesn’t require cooking and clean up. You lose time for exercise or when the time is there you’re too tired to use it.

St. Joseph weathered that stuff, accepting a situation that was out of his control, using his artisan skills to provide at least subsistence for his family as they traveled from place to place, bearing the cultural and just-plain-manly mockery about how his young wife got pregnant before he even had a night with her, and keeling over dead before the reason for all the hassles became clear.

Pretty lame on the world’s terms, but maybe the way to look at a different kind of strength. It’s what’s preached in the final scene of one star studded Hollywood Western,

or an urban gangster tale,

If there was ever any chance of me being the gunslinger, or the gangster, or Steve McQueen, or any kind of impressive or attractive man, care giving killed it but good. Yet it’s called out a different kind of strength and victory, into which I’m still growing in middle age.

***

Found this great site by a care giving dad. Good thoughts and laughs there and via his Facebook page.

Merry Christmas!

We are happy to say that, now that Joey is 19 years old, he is adding to the holidays in ways that we had never imagined. He practically flew down the hill at the Christmas tree farm where we went to chop down the tree, in anticipation of the day. I remember the days when he just waited inside the building, shivering. His wishes for gifts remain simple – just a couple of VHS movies! He understands numbers of days and counts them down as Christmas approaches.

If that wasn’t enough, we have learned some fascinating information which we would like to share with you in the picture below (you can click it to enlarge for reading). Merry Christmas and Happy New Year!

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(Our thanks to the “Autism with a side of fries” blog for this!)

My feminine side or my inner wimp or what?

I had a flash of honesty today, and took advantage of the fact that Melissa has a bad cold or mild flu to confess it to her while she was in and out of consciousness.

I was remembering the day that our older kid (the one without special needs – do we ever mention him?) moved out for college. It was way hard on Melissa. Soon, he will move across the country altogether to serve in the Navy, and I think that day will be hard on her, too.

His moving out wasn’t hard on me. He came into the world with a lot of gifts and we evidently didn’t screw those up too badly. I had and have all kinds of confidence in him, so watching him move about is a satisfying vicarious adventure for me.

But as I thought about his departure (here comes the flash of honesty), I thought as well about Joey (our autistic son) moving out into a group home, probably in the summer of 2015. And I became very uncomfortable – in fact, I got downright moody.

I have all kinds of good feelings about the local group homes. We’ve toured them and Joey currently has his day program with the agency that runs them. Great people – no worries about that.

And Joey’s health is good and improving all the time. No seizures in ages. Off of several meds and doing better without them. Seldom gets sick. So I don’t worry about that.

It’s just that all the care giving, frustrating as it’s been (as reflected in the blog title, right?) has built bonds and opened up tender places in my heart that will cause me pain as he moves out.

Yes, we are ready to be empty nest. Yes, we are ready to have some kind of normalcy in our domestic life.

But when Joey moves out, I’m going to feel it in ways I’m just now starting to perceive. I’m gonna need some privacy and kleenex, and maybe some Patron when that time comes.

When you can’t laugh, work or otherwise make your way through it

A moving 20-minute audio about a family who struggled and then came to terms with their inability to handle their grown autistic child. (You’ll want the “ACT TWO” segment of the broadcast).

If you are a care giver, you’ll recognize the feelings – and you might want to share this with someone who doesn’t seem to understand what you are dealing with.

All work and no play makes Oliver an orange cat

They call it echolalia. Spell check here on the blog says it doesn’t exist, but don’t let that fool you. Merriam Webster defines it as

the often pathological repetition of what is said by other people as if echoing them

That’s kind of harsh. Autistic people can use this kind of repetition as a way to connect. It helps them recount things they heard during the day. They can use it as a narrative. We learn more about Joey’s day by echolalia than we do by asking him what went on. “Sean, get out of the kitchen” is one of our favorites, even though that repeated report of a discipline problem at school is years old now.

But it can wear on the mental health of the care giver, that’s for sure. If Joey isn’t feeling well in the middle of the night, he wants to know that mom isn’t far away. So he comes barging into the bedroom to make contact by asking about a logo on one of his videos.

“What ‘W’ is it?” he demands.

To which he expects mom to reply, “It’s Walt Disney pictures.”

And he echoes “Awww, ‘W’ is Walt Disney pictures.” Then he goes away. For a minute or so. Then the door crashes open again. And he answers his own question, echoing mom’s half asleep moan,

“What ‘W’ is it? Aww, it’s Walt Disney pictures.” And away he goes. And then comes back and says it again, leaves, comes back and says it again, leaves…

Care givers can wind up feeling like Shelley Duvall’s character in this famous scene,

Today Joey had to stay home sick. He became enthralled in Oliver and Company. Which produced the following echolalia fest,

Joe: “Who’s Oliver?”

Mom: “Oliver is an orange cat.”

Joe: “Awww, Oliver is an orange cat.”

Joe: “Who’s Oliver? Oliver is an orange cat.”

Joe: “Who’s Oliver? Oliver is an orange cat.”

Joe: “Who’s Oliver? Oliver is an orange cat.” Etc.

But then it isn’t just autistic people who resort to repetitive conversational conventions…

Seizures

They (just who the heck are “they”?) say that things happen in bunches.

In the last few months, we seem to have been in touch with a lot of people taking care of a loved one with a seizure disorder.

When Joey was little, he had these moments when his eyes would flutter or even roll back for just a second. It was like he went on a mini vacation – when he came back, he was totally disconnected from what went before. But these dinky events were previews of future drama.

Fast forward to a morning in his high school years. I had Joey ready to go out to the car.

I said, “Get your backpack” and turned to the table to pick up my keys.

There was a heavy thud behind me. Annoyed, I turned to see what Joey had swept off of the shelves while putting on his backpack. Joey wasn’t there.

Then my ears filled with a demon possessed version of the laugh made famous by Beavis and Butthead. Joey was on the floor, his arms and legs rigid and thrashing. The horrid sound kept shuddering from his throat as his head kept up a steady knocking on the wood floor.

“Joey! JOEY!” I kept forcing out his name, although my lungs felt caved in. An idiotic reflex was telling me that if I got loud enough, I could call him out of whatever was happening to him.

Then he roared out that incoherent noise a final time and his arms, legs and head stopped convulsing.

Then nothing.

It couldn’t have been but a few seconds, but like “they” say, time stood still. I thought I’d just watched my son die while I uselessly bleated his name. My breathing stopped and my insides began to surrender to nausea.

Joey breathed. A deep, close-to-snoring breath, the kind that would drive a parent nuts if the kid was supposed to be up for school. But it was heavenly music. He was alive.

Then came a blur of rushing him to an emergency room, not even running back to knock on the bathroom door to let Melissa know, leaving her with the terror of coming out of the shower to find my laptop glowing on the table instead of packed off to work, and Joey’s backpack tossed in a corner – just a room shouting “Chaos! Emergency! Something’s wrong!”

That was that day. Then came years of work with neurologists, experiments with different medications, and calmer recognition of a seizure’s onset. We became proficient at securing his head and neck and helping him to the floor. We learned to let him sleep them off, sometimes until the next day.

We pressed his school to keep aides near him and keep him in a gait belt.

He had bunches of seizures for several years. He came to anticipate them, moving to a chair or couch when he felt one coming. We prayed hard for protection from falls and worked hard to be prepared for them.

We learned to prioritize his head but also tried to protect his thrashing limbs. His shins often wound up bruised from beating against nearby furniture. Sometimes we could push an obstacle aside, but sometimes it would be a bed or other big piece and we just had to concentrate on bracing his head and neck.

There are years of horror stories we could share. Melissa dealt with one of the worst seizures one day while I was at work, and I’ll leave it to her to tell that tale, which is bloody.

The bottom line is that he’s not having seizures much anymore. His neurologists (he would sometimes ask for one of them by name if he felt like a seizure was coming, or after he woke up from one) came up with some good med combinations. But mostly he just passed through the craziness of puberty and his brain chemistry settled down.

Seizures are one more aspect of care giving that is devastating, demanding and largely beyond our control. They’re like what I’ve heard combat veterans describe – after you get passed the terror and confusion of the first time, you settle into the grim business and just have to deal with it.