Posting from under the car

This picture is a disturbing reenactment of an actual incident.  Viewer discretion is advised.

This picture is a disturbing reenactment of an actual incident. Viewer discretion is advised.

So here I am under the bumper. It all started just a few minutes ago…

[Picture goes wavy/eerie music]

I’m here at the clinic with the autistic kid for a 3 pm doctor appointment, which is crammed into the last week of the year because he doesn’t have a physical on file with his day program.

Only, everybody in town is cramming stuff into this week, so the doctor is running late. An hour late. Now it’s 4 pm in the waiting room.

Lo and behold, the kid’s remained calm for the hour. He chit chatted with me about movie lines that make him laugh. He probably did better with the hour than I.

Physical went fine. Doctor remarked on how calm and composed the kid was compared to previous visits.

Out into the frigid air. Get the kid in the car and turn it on to get the heater running. But the extra hour means snow and – worse – some ice is coating the windshields, so I need to scrape.

Which I commence to do. Which I commence to do with a scowl. Which I commence to do as if there’s an emergency underway. And in rushing from one end of the car to the other I don’t see the ice-coated parking bump under the snow and…

[Picture goes wavy/eerie music]

Same warning as in the first pic.

Same warning as in the first pic.

So here I am under the bumper.

One of the stinky things about care giving (even in winter when stuff freezes before it can stink) is the way chores and errands and irritations pile up. We have our bad days, when even if the circumstances are going well (or at least better than expected), we fall down and go boom. Because we’ve put out so much energy staying calm in the face of crazy situations that we are just empty. We’ve deferred so much self care that we go off emotionally over little things.

Some years ago some friends and I had a code that we borrowed from Bible study. If one of us said, “It’s a Psalm 37 day,” we knew that his temper was being pushed into the red zone, and made it a point to let him vent and calm down. Because Psalm 37 says,

Refrain from anger, leave rage alone; do not fret yourself; it leads only to evil.

Maybe I should tape that to my axle for next time.

Most Dog Toy Attacks Are By A Friend or Family Member

OK, I am going to step into this post-Connecticut-shooting-debate and then try, God willing, to step out.

There’s plenty of buzz about the need for mental health resources as part of stopping such horrors before they happen. I agree with that to an extent, but not all things “mental” are “mental illness.”

The killer in Connecticut is described as having tendencies on the autism spectrum. Maybe so. But that’s not the stuff that makes mass murder. Autism is not a “mental illness” like paranoid schizophrenia. In layman’s terms (my native language),

autism is a disorder that impacts how one processes and responds to reality: it does not put one out of touch with reality. That is a big difference.

Bekah Cheppenko, Mrs. South Dakota, was on the local radio today. The interviewer asked about her support for autism research and care, but referred to autism as a “mental illness.” Mrs. Cheppenko was gracious but stated clearly that autism is a neurological, developmental disorder. It’s not “mental illness” as that should be understood for purposes of societal intervention.

We had an incident years ago in which our autistic kid became frustrated because a computer froze up and I couldn’t do anything to fix it. He grabbed a rope dog toy off the floor and started beating me with it. It is an awful memory, but I hope you can see that he was not out of touch with reality – not “mentally ill.” He was frustrated, there was a clear reason for it, but his response was wrong (to say the least).

Yes, he lacked empathy and impulse control. So do lots of “normal” people. Lots of “normal” kids have tantrums; lots of boyfriends don’t pick up on the hurt feelings of girlfriends; lots of girls keep throwing themselves at the same loser guys because their emotions get wacky if they “don’t have a man.” But autistic people, immature kids, dense guys and dumb girls aren’t wandering the streets, looking for rope toys with which to beat passing strangers that they perceive as demons. Mishandling reality is not the same as detaching from it.

Autistic people require lots of coaching, structured therapeutic and learning activities, and sometimes medications. Less seriously, bratty “normal” kids can get a swat on the butt and/or denied the toy of their craving. Insensitive guys can get dumped; serially used girls can get a clue. Sure, some cases are harder than others, and there are community implications of some behaviors and needs. But lumping them all under “mental illness” is a mistake.

Our son no longer beats on me with dog toys. That’s due to patient work by mom and dad, some medication by a very conservative psychiatrist who is as ready to reduce or remove a med as to order one, behavioral training in schools and community programs, and, in all honesty, a couple of hard (and well deserved) tackles by his big brother. He’s learned more appropriate ways to engage reality, such as griping and moaning when frustrated. Or taking up some other activity when the one he’s at isn’t satisfying.

If you’re looking at autism to explain the Connecticut massacre, you are going to be frustrated. So look somewhere else for your answers. Don’t make me confiscate your dog toys.

Merry Christmas, Care Givers

2012-12-21_19-09-59_268 We are old school – we leave the manger empty until Christmas, then put the baby Jesus in. Often, we have our son do the honors. Some years, he’s not in the mood. Jesus still arrives.

As we look at the manger this year, we notice how the care givers stand there at the ready. That’s probably your stance this Christmas Day; it’s really a day like most others for care givers. You stand by to take care of those that life has placed in your care.

If you’re a church goer you know that it is in vogue for preachers to get all stuffy at Christmas, explaining the Greek words and letting you know that it wasn’t really a barn but something more like an attached garage.

But we’re OK with the barn symbolism. Barns can be cozy but also stinky. And care givers will probably have some of both on this holiday.

We pray that God blesses you with more of the cozy, and that he sends you every inner gift you need to deal with the stinky. Today and every care giving day.

Your visits and thoughts at our blog are a blessing to us. Thank you so much.

The Winged Electro S**t Worm

I served in the U.S. Army during the Cold War. I believe it was called that because we sat around being cold a lot in what used to be West Germany.

I was in the Field Artillery, in what was called a “Special Weapons” section. There were four of us and we were somewhat unpopular. We handled “classified government high explosives,” and this gave us all kinds of breaks from duties endured by others. For instance, we had a restricted access work room, which led the rest of our unit to believe that we were kicking back being warm while they were outside working in the cold. Which was often the case.

But even in our relative privacy and comfort, we still did what soldiers do, trying to fend off boredom during long stretches of “hurry up and wait.” Lots of banter, lots of complaining, and occasional outbreaks of laugh-’til-it-hurts humor.

One slow day, one of my section mates found this thick roll of paper, unrolled it, and taped it to the wall of our hideout, from ceiling to floor. He marked horizontal lines on it, making it look like a giant thermometer.

Then he took a sheet of notebook paper and drew a critter that was like a giant dragonfly, except with sunglasses. “This is the Winged Electro S**t Worm,” he explained with no lack of creative pride.

Then he took a piece of masking tape and affixed the Worm to the thermometer. “The Winged Electro S**t Worm will render our attitude check as needed.”

And so it did. S**t Worm high up the thermometer, near the ceiling? That meant our spirits were high. Like when we avoided going out to work in the cold, or we passed one of our constant readiness inspections, or we found girls in town who hadn’t sworn off of dumb GIs.

2012-12-22_09-13-56_966But sometimes the worm moved down toward the floor. S**t Worm low on the scale meant our attitude was dropping. Long cold walk to town, struck out with the girls, long cold walk back = S**t Worm descending. Sergeant ordered us to go to the motor pool and work on our truck? Worm dropped down some more.

One day I walked in to find the Winged Electro S**t Worm taped to the floor in the middle of the room. Can’t remember why our section was in such a bad mood but the worm expressed that we were about as low as we could go.

One day a Lieutenant happened in unexpectedly, took offense and made us get rid of the attitude thermometer and the S**t Worm. The End.

What’s this have to do with care giving? Well, here we are in the holidays, with plenty of extra stuff on top of the regular routines. High hopes and big let downs can alternate quickly. Attitude can ride the waves.

We took our son to a couple of seasonal music programs. Taking him to public events can be risky, but he actually listened and enjoyed them, and our holiday spirits rose.

On the other hand, we’ve been getting the house ready for a Christmas Eve party. Company! Human contact! But the kid (and the dog and the cat) have countered our tidy-up efforts with some formidably disgusting messes. Attitude sinking… sinking…

Holidays make the roller coaster ride of care giving more intense, I think. Laughter, even the grim kind, can be good medicine for attitude fluctuations.

So don’t be ashamed to represent with a Winged Electro S**t Worm.

The Workplace: Help or Humbug?

My guess is that care givers are a mixed lot in the workplace.

On the one hand, there are some positives we bring:

+ We are accustomed to offering dedicated work in demanding situations.

+ We can are motivated in a strange way. We sometimes like coming to work, because it can be a bit of order in our lives. At the office or shop, we can see tasks through from start to finish, a nice break from the loose ends and frequent failures of our care giving.

On the other hand, there are some downsides:

– We get called out for emergencies a lot.

– We can come in with frayed nerves and be hypersensitive some days.

Some of you must have more (+) and (-) examples to share. Our perspective is somewhat strange, because we’ve been both “boss” (at least on the org chart) and burger flipper in our work lives. We’ve greatly appreciated those who have been flexible and supportive with the extra demands that care giving places on our time, energy and attention in the workplace. Compassionate supervisors, coworkers and employees are a blessing.

Then again, your workplace might leave something to be desired:


Usually “Whodunit?” stories center on the hunt for a bad guy. But ’round here there’s a good guy hiding out.

2012-12-18_05-30-38_820It’s snowing in Sioux Falls. Pretty light and gentle, but enough for the “clear your sidewalks” law to kick in.

One of the neighbors keeps clearing the sidewalk in front of our place. Sometimes, when the snow is heavier, I’ll come home to find my driveway cleared as well.

2012-12-18_05-24-44_520I have my suspicions. But I like to leave it a mystery. Kind of magical, really, like angels or elves come and do it when I’m sleeping.

Anyway, the point is that gestures like this make a care giver’s day. In those moments when care giving stinks, some task taken off of the pile feels like found money or a love note.

So if you know a care giver, put on your black ski mask and slink around when nobody’s looking. Be the “who” that “dunit.” You’ll be a blessing.

Care giving and the horror in Connecticut

I’m sitting here sick, almost to the point of nausea, about the school massacre in Connecticut.

Teachers and school staff. Children. Families. A young man with a “personality disorder.” Care givers and those in their care. Dead. Or dying inside because those they love and care for are gone.

Both social and mass media are full of opinions. Loud, political pronouncements about how SOMETHING MUST BE DONE.

I won’t jump on those here because that’s not what our blog is about. But I will throw in one thing to consider:

The killer, the one with the known “personality disorder,” appears to have lived at home with his mother. As we’ve commented before on this blog, there comes a point where family members, however loving, skillful and motivated, are not up to the needs of those in our care.

Amidst all of the political hot air blowing, perhaps we need to bring up the less sexy subject of funding for institutional placement and care for those who are not criminals but cannot function safely in society. To stop looking down our collective nose at families, expecting them to go 24/7/365 as if they are clinical settings, because “it’s their problem.”

That’s all I’ve got this weekend. Words really fail. Melissa and I pray, but in all humility finding the right words is hard so I’m not going to say any platitudes about that. There are times when even prayer is cloudy and drizzly,

Psalm 88

10 My sight has failed me because of trouble;
LORD, I have called upon you daily;
I have stretched out my hands to you.

11 Do you work wonders for the dead?
will those who have died stand up and give you thanks?

12 Will your loving-kindness be declared in the grave?
your faithfulness in the land of destruction?

13 Will your wonders be known in the dark?
or your righteousness in the country where all
is forgotten?

(Book of Common Prayer, 1979)

Track ‘n’ Field

I spent the summer of 1984 in Providence, Rhode Island. One weekend, some former members of the rock band Boston gave a free concert with their new group, Orion the Hunter.

Orion didn’t do so great – but they got one song onto the charts (80s video – watch at your own risk) –

So. You. Ran. There was a mayoral election in Providence that summer, and DJs would play this song to mock the uninteresting field of candidates, “Eh. So ya ran.”

If running is a metaphor for living, care givers might be tempted to take that cynical point of view. “So I ran. I think I just wound up tired and sore for all the good it did.”

Maybe so, if running is just about pleasure or escape. But what if “tired and sore” are admirable? What if just getting out and pounding along the best you can is what the race is all about?

The race track described by Jesus ain’t easy on the ankles,

“Enter by the narrow gate. For the gate is wide and the way is easy that leads to destruction, and those who enter by it are many. For the gate is narrow and the way is hard that leads to life, and those who find it are few.” (Matthew 7:13-14 ESV)

His followers would say that the race isn’t about setting records, just about running the whole thing:

I have fought the good fight, I have finished the race, I have kept the faith. (2 Timothy 4:7 ESV)

Just keep plodding along. Yeah, it hurts some days. And then there are days when you get a second (third, fourth, five-hundreth) wind, and you’re in the zone and it couldn’t be better.

Just the fact that you’re on the track, going the distance to care for someone who needs you, is duly noted by the final judge of this event…

Not that I have already obtained this or am already perfect, but I press on to make it my own, because Christ Jesus has made me his own. Brothers, I do not consider that I have made it my own. But one thing I do: forgetting what lies behind and straining forward to what lies ahead, I press on toward the goal for the prize of the upward call of God in Christ Jesus. (Philippians 3:12-14 ESV)

“NUMber TEN!!!!!”

Joey’s always liked music. There was a CD we had when he was small, very assertive and easily frustrated. Can’t remember which one it was, but it gave us another of our decoder ring experiences:

Joey would go around bellowing “NUMber TEN!!!!!” We finally figured out that he could read the… uh… just what were those brittle plastic things that CDs came in? Anyway, he could read the paper insert (before prying it out and mangling it), and he knew that track #10 was his favorite song on that CD.

OK, back to the present. I ran into one of our blog’s followers this evening. She said, “Sometimes I start to read something you’ve written, and I think, ‘Yeah, I know just what that’s all about.'”

name that tuneHer comment reminded me of the old TV game show, Name That Tune, which lo and behold now exists in an online version. Contestants would make a wager, something like, “I can name that tune in three notes.” Three notes would then play, and the player would attempt to guess the song.

And then there’s that joke about a planet on which all jokes are assigned a number. All someone has to do is call one out – “Fifty five!” – and their fellow space creatures start cracking up.

There are so many experiences and emotions that care givers share. Our blogging dials those up, sometimes intentionally, sometimes accidentally. Our hope is that this creates an affirmation, by which other care givers know they are not alone or crazy or just doing it wrong or some combination of those things. We’ve all got these situations that could be assigned numbers for rapid empathy:

“Oh, man, what you’re going through is so #15!”

“Yep, so glad you got past that #747 last week and are here for us today.”

We also hope that some of you who aren’t caregivers will visit now and again, and that these experiences we share will open your perspective on the care givers you know. Really, we’re not crazy loners who do stuff wrong. After all, how many of you would know how to respond to “NUMber TEN!!!!!” ?

Watch your tank

I was on stage with Jackson Browne.

OK, it was some civic event, not a concert.

The reason I bring him up is to appear really cool riff on the title track of his 1977 album (remember those?), Running on Empty.

That was about the exhaustion of rock ‘n’ roll concert tours. Not just the long hours and physical exertion (both performing and partying), but the separation from home and the people one loves and who love in return.

2012-12-05_16-55-23_85It’s no great revelation to say that caregivers can wind up “running on empty.” But we run a great risk if we limit our perception to physical and material stuff, like energy and money. The great danger is that our love can be depleted. Not just for those in our care, who can be so demanding, but all the other people around us.

We don’t have a separate tank for each relationship – we have one tank to keep filled.

It is easy to run dry. It isn’t a dramatic event, but a slow, steady draw down of our love. One day we find that we’ve stopped enjoying some of the normal stuff we do with those around us. Then we stop enjoying them. And, sadly, despite their desire to love us, they stop enjoying us as well.

Care giving can keep our foot on the gas, squeezing out that last drop of love to get us graciously through some unpleasant demand. But then comes the simplest request or tiniest unkindness of a loved one, and we find our tank empty. We don’t have even a bit of our self left to share.

It is important to refill that tank. To receive the love of others. To delight in beauty, be it natural or man-made, it’s all God-given. To play aggravating board games with someone who can grouse and laugh about them with you. To talk sports platitudes with the guys and go shopping with the girls (or vice versa if that works for you.)

To be filled with the goodness of and good news of life for a bit, and recognize an abiding love that is ours to draw upon so we can keep sharing it with those in our care.

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. (Romans 5:3-5 ESV)