Carrot or stick, guys?

The blogger who goes by Autism Daddy has a great post up, “A Letter To The Dads That Left Because Of Autism & The Ones That Are Thinking Of Leaving… (from a dad who stayed)”.

IMG_20140531_113657_788He takes a stick to dads who bail on wives and kids because of the challenges of care giving…

Let’s get something out of the way right out of the gate. Let’s admit it. Let’s call a spade a spade You were a jerk already, before the autism, right? You probably would’ve left for some other reason. It was already in your DNA to be a loser, right?

There’s a real need for sticks today, I’m afraid. Too many guys are raised without strong male role modeling, and the culture is conflicted about just what makes for a good man in the first place. Lots of mixed messages, negative messages, and incentives to stay a boy; what Dan Kiley called “The Peter Pan Syndrome.”

So there’s a need for strong voices, kicks-in-the-butt and sticks to “guide” dads in the right direction as care givers. (That’s the direction toward the need, not out the door.)

It is a challenge, for sure. I once went to a spiritual mentor and confessor because I was having graphic sex dreams every night. “Look, I’m not trying to stir this up,” I complained. “I’m not watching porn. I have a great time with my wife. So what’s the deal?”

“Escape,” he shrugged. “You’re feeling overwhelmed and your mind is trying to go some place fun.”

So I get the desire to run. It’s an “animal” instinct in difficult situations like care giving. We are, in some ways, wired to at least consider running away. And sometimes we need a stick to keep us from doing that.

But some of us, maybe most of us, respond to carrots. Praise from the wife, encouragement from friends and family, breakthroughs or just plain pleasant moments with those in our care – these things keep us close and keep us coming back when we feel tempted to run.

In my case, faith provides bunches of carrots. As a Christian, I seek to stay on a path that includes hardship as a means to spiritual growth and joy. Here’s a prayer from the tradition in which I live out my faith,

Almighty God, whose most dear Son went not up to joy but
first he suffered pain, and entered not into glory before he
was crucified: Mercifully grant that we, walking in the way
of the cross, may find it none other than the way of life and
peace; through Jesus Christ our Lord. Amen.

With Joey’s autism, I’ve been pushed beyond what’s pleasant into what’s really loving,

Love bears all things, believes all things, hopes all things, endures all things… When I was a child, I spoke like a child, I thought like a child, I reasoned like a child. When I became a man, I gave up childish ways. (1 Corinthians 13)

I am a more mature man, a fuller person, and a more sincere Christian for having been a care giver. The God in whom I trust has planted plenty of carrots along the path I walk.

May you find a bunch of ’em, too.

Time to open some chilled whine

The background: Melissa and I have been eating healthy fare, really sticking to a sensible food plan for about 2 months now. We’ve lost some weight and are feeling more energetic and positive.

Saturdays have been our “free days,” wherein we can enjoy some stuff that’s not on the diet as a reward for sticking with it during the preceeding week.

Today is Saturday. It’s our free day. We discussed going to a fave BBQ place in town for awesome ribs and really bad (in the good sense) side dishes and maybe even some beer.

But it is subzero outside, with snow falling.

Soooooooooo,

Melissa is a good care giving mom. She sees that Joey is a bit tired and looking plenty comfy in the house on this cold day. Why make him go out? “Maybe you (that’s me, Tim) could pick something up and bring it home.”

Cue the tiny violins. I’m whining now. Not ranting, whining.

The fact is, I don’t want to fetch food for folks. I want to sit at a table and have someone fetch it for me. I don’t want to set up or clean a table. We do that all week as care givers, and contrary to all of the gender stereotypes, I do quite a bit of it (and I’m a decent cook and have the best handle on the food plan, so I do much of the cooking, too).

Melissa is 100% right. It will be easier for Joey to stay home and have me bring something in. But I want my respite from the routines of the week.

Wah, wah, wah, sez I.

TMI, Mature content and all that

Minnesota Mystery Tour 004OK, let’s just go for it. What do you do about erections?

All guys become obsessively aware of them at some point. Heck, it’s a life long thing – there’s a whole pharmaceutical industry built around maintaining ’em.

Of course special needs guys don’t always have the social skills to manage theirs (I know, I know, “That’s not unique to special needs guys,” you’re sayin’.)

Jokes aside, there are a whole range of uncomfortable problems care givers must deal with when this force of nature kicks in. What’s the graceful response to public masturbation, for example? We have a friend whose kid “keeps it in his pants” but wants to grind against the nearest available female, like a small dog coming after your shin.

Sometimes it’s just a kid walking around with the condition “obvious.” I mean, he didn’t do anything to self-stimulate; it’s just there. So what do you do? It’s not a “behavior” you can talk out or redirect – it has a life of its own.

Then there’s the occasional kid who is modest, uncomfortable and confused by the whole thing. Our poor guy makes a distressed face like he’s getting sick, goes to bed and pulls blankets over himself until the problem goes away by itself.

Obviously, raw panic is not the proper care giving response. Hard to say what is. I have a Canadian friend who played minor league hockey, and he has an old coach’s saying about staying composed, “Keep your head up and your stick on the ice.” But that’s just so much joke fodder if you’re talking about erections.

I don’t have great advice to share here. Just commiseration.

But since I’ve manned up and shared this hard topic, I wonder if the Cialis folks will send me one of those complimentary claw foot tubs in which to relax?

Here comes the bride… or at least the groom’s kid brother

Today Joey’s older brother gets married.

Joey is not into dressing up, but we’re making that happen anyway.

We found one of his brother’s outgrown suits in a closet downstairs. A lady at our church did some alterations (there really wasn’t much it needed), and it will look good. That is, once we can get him into it.

The folks at his day program put together a “social story,” a mini-picture book to help him anticipate and be ready for today. It has pictures of his brother with the bride to be, the church, the reception hall, familiar people he’ll see, and the suit.

IMG_20131216_172509_015Along with that, I’ve had it hanging in view so he has to look at it often. Like a forlorn prisoner looking through the bars at the gallows outside, or like my stack of bills in plain view on the desk for payday, the suit is just inevitable now. There’s no avoiding this rendezvous with destiny.

Wow, I’m talking about Joey getting into the suit with language more appropriate for the wedding itself. The rendezvous with destiny part, not the gallows image.

Right?

Wish us well.

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.

It’s all like sex!

Our older son and his fiancee are in town. Yesterday we were at a tuxedo selection and fitting for the wedding party guys, including dad.

It was fun to connect with the groomsmen and a couple of the ladies who came along. After the fitting, which went like clockwork, we all went out to Buffalo Wild Wings for late lunch/early dinner.

OK, so what’s the sex business in the title?

Well, the things that made the day go so well all fell under the category of, “Hey, Joey’s not here!”

So much of care giving is like parenting little kids, trying to sneak in sex in the few moments when you are absolutely, positively sure they won’t be walking in on you. For care givers, the game continues way past the few years that young parents have to navigate. And I’m not just talking about sex – I’m talking about anything enjoyable.

The tux fitting was laid back fun because Joey wasn’t there.

The trip out to eat was fun because Joey wasn’t there.*

Real, pack up and go away vacations are on hold until Joey isn’t here.

Many social engagements get wiped off the calendar (if they ever make it on in the first place) because Joey’s still here.

We love Joey. We want only the best for him and there are plenty of moments every day when we delight in being with him. But he can be like a toddler who’s been here for almost 20 years. Every little pleasure we enjoy is squeezed into margins defined by Joey. It’s all like sex, see what I mean?

*Beer, chicken wings and sports on a big screen TV counts as sex, right?

Paging Blanche DuBois

Yeah, the kindness of strangers can be a big part of getting by, as poor gone-around-the-bend Blanche reminds us,

In our last post, Tim’s head was exploding because our son’s disability check didn’t show up and bill paying day was at hand. Some folks who read that post sent funds that more than covered the shortfall. We didn’t ask for the help – it just came.

OK, they weren’t total strangers, but they are far from folks we know well enough to call up and say, “Hey, give us some money.” In fact, we don’t even have the phone numbers of our latest benefactors.

It is hard to rely upon the kindness of others – be they family, friends or strangers. Pride looms up. There’s the manly “I can handle it myself” variety, and the prissy “People will look down on us!” vapors.

These thoughts deny the reality that we live in a constant state of grace, reliant upon others to care for us every bit as much as those in our care depend upon our efforts. Most of all, reliant upon a love that we can’t possibly earn or deserve,

Keep your lives free from the love of money and be content with what you have, because God has said, “Never will I leave you; never will I forsake you.” (Hebrews 13:5)

That love came our way again, uninvited, in the form of those who reached out in our most recent need.

Meanwhile, we are in touch with a specific person at our local Social Security office (another reason to keep all the paperwork – sometimes there’s a name in that stuff), and should have Joey’s benefits restored shortly.

Thanks for your prayers and encouragement. These treasures also came our way since the last post. We pray that an abundance of gracious kindness comes your way in the days ahead.

Respite Weekend

Yes, buffalo roam.  They like their space, too.  Don't intrude.

Yes, buffalo roam. They like their space, too. Don’t intrude.

Our blogging has been sparse of late. Things have been busy on a number of fronts.

Now there’s a chance for some rest, so we’re just posting this to say, “See ya next week.”

Tim is off to the Black Hills with the church guys, the deer, wild turkey, buffalo, antelope, trout and whatever all shows up. He’ll be tenting this time – not quite Man Versus Wild but a definite change from the usual cabin digs. Being out in a beautiful setting with no real agenda is refreshing.

Melissa will be on Joey watch, but on Sunday one of Joey’s fave adults will give her a break so she can go to a party for a friend who just graduated college and is newly engaged, as well as being a leader in the rebuilding of his homeland. It is uplifting just to be near him, and puts one’s struggles in perspective.

Thanks in advance for understanding. We need some time to breathe. We pray that blessing for you as well.

The apostles returned to Jesus and told him all that they had done and taught. And he said to them, “Come away by yourselves to a desolate place and rest a while.” For many were coming and going, and they had no leisure even to eat. And they went away in the boat to a desolate place by themselves. (Mark 6:30-32, ESV)

A good measure

This weekend, I (Tim) needed care. I wasn’t sick. Well, heartsick maybe. Workplace crud had me down.

Melissa listened. She let me vent the mood, and checked in with me later that night asked if I was doing better.

Joey was in a perky mood and kept me laughing. Empathy is not the strong suit of the autistic, so he wasn’t saying entertaining things just because dad was down. But he helped in his own way, just being Joey.

This shouldn’t be a surprise. I think it is God’s design that some precious return comes back from what we invest in others. Those in our care turn around and take care of us in some unexpected ways.

Teaching about mercy, Jesus said,

“…give, and it will be given to you. Good measure, pressed down, shaken together, running over, will be put into your lap. For with the measure you use it will be measured back to you.” (Luke 6:38)

When we garden, we dig around in dirt and spread stinky fertilizer, sometimes on hot, nasty days. We get sunburned necks. We aggravate our joints and all the little muscles that never get used except when we garden.

Then the flowers, seemingly without effort, give us their color and fragrance; our fruits and veggies give us flavor and satisfaction. Good measure, filling our gardens, baskets and kitchens.

No, our flowers, fruits and veggies don’t mow the lawn or rake and bag the autumn leaves. What they give back to us isn’t exactly what we give to them. But we come out pretty darn well on the exchange.

Joey doesn’t do housework; Melissa does some that her condition allows. But there’s care giving effort they put into me that is the “good measure.” When stuff has me down, the two people in my care are my care givers.

They’re the ones who can kneel down and nurture something fruitful in the muck of my soul.

What a rip off

And here’s another stinky dang life rip off, courtesy of care giving.

We just had a major winter storm here.  In April.  Yeah, that stinks, but that’s not care giving’s fault.

Ice formed on trees and caused big branches to break off and fall all over the place.  Also stinks, but not care giving’s fault.

2013-04-09_12-29-45_594Here’s what’s care giving’s fault.  I have a reasonably health 19 year old guy in my house.  He’s autistic and he can’t help me with stuff like getting those branches off of my roof, out of my walk way and somewhat clear of my driveway.

Got to do that all by myself.  With a hatchet.  This stuff happens so seldom in the city that I’ve never bothered to buy a chainsaw or other appropriate tool.

I’m tired and sore.  With a physically healthy 19 year old male in my house watching movies.  Isn’t the slave labor of sons one of the rewards of being a dad?

Not in the long winter of care giving, it ain’t.  What a rip off.