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.

That’s it, We’re Joining a Union

I think it is time that Melissa and I had some way to negotiate with Joey over his management of our lives and set some workplace rules that give us some protection.

unionI have a long time pal who is a real deal Union man… works on the       <—docks, for crying out loud.  Maybe he can give me some advice about how to get this started.  (I don’t think we can be Longshoremen in a landlocked place like Sioux Falls, although there are a couple of canoe/kayak launch spots along the Big Sioux River here in town).

A couple of things got me started down this line of thought…

  • The workers should have guaranteed hours of sleep.  Management should not be able to throw on the lights and watch Disney movies in the middle of the night.
  • Bathroom breaks.  The help should have a certain amount of time to see to our own bodily needs without the boss making some urgent demand. 
  • No working outside of your specified job.  Melissa and I are responsible for cleaning, folding and storing the laundry…





…So imagine our surprise when the management sent unqualified goons to take all of the clean pants out of the proper drawer… 







…and dump them in a laundry hamper with the dirty clothes.



Oh, I could go on.  

  • Reasonable meal times, at a table, instead of bites at the kitchen counter between chores and emergencies.
  • Protection against mental injuries due to repetitive actions.  Like, “Management cannot ask employees to repeat movie lines or song lyrics more than X times per hour.”



Sick day

Warning: some unpleasant stuff will be described. Also annoying people.

The kid has the respiratory virus du jour. Lots of congestion and a raspy cough.

But also plenty of gagging. You see one of his autism deals is that he won’t expectorate. He doesn’t spit out gunk – he just swallows it.

So, while I was off at work, he threw up all over his bedding. Melissa cleaned up the mess (you know, what the cleaning spray cans call the “solid”) and lugged the bedding – including a weighted sensory blanket, to the laundry room at the other end of the house. She has weight lifting restrictions due to a medical condition, so her moving a soaked load out of the washer and into the dryer is a no-go. She gave me a call to describe the situation.

I’ve been behind on shopping, so there wasn’t any kind of cleaner for the mattress or rug, both of which caught some of the mess. So I left work to buy some and come give Melissa a hand at home.

On the plus side, the secretary at work made splitting as painless as possible. She helped me think through what absolutely needed doing so I could bundle up stuff and get it done at the house. She also called various folks for me so that others could take over a couple of scheduled meetings.

But then I got to the hardware store to get those cleaning supplies. And that’s where Joey’s sick day started making me sick.

There were plenty of red-vested employees visible around the store, but most were stocking shelves and displays. There was only one register open.

The woman at the register was also answering the store’s incoming phone calls. She was in an extended argument with someone who wanted a rug shampooer or other rental doodad and wanted to debate the store’s “no reservations” policy.

I was third in line. #1 was a little old man who kept saying “I don’t do this very often,” meaning swipe a card at a point of purchase. He pushed wrong buttons and cancelled his own transaction at least twice before the lone check out clerk escaped the call with the aggrieved rug shampooer customer and helped #1 pay for his package of batteries.

#2 was a burly contractor looking fellow picking up some landscaping materials. As he stepped up to pay, off went his cell phone. And of course he took the call.

It’s a few hours later now. Joey’s bedding is pretty near clean. The mattress will be dry enough for fresh sheets pretty soon, although Joey jangled my nerves by knocking over the oscillating fan I’d placed in his room to help dry the mess spots I’d cleaned.

I’ve finished the major work I toted home.


But how many people get paid to eat pizza?

A study from Vanderbilt University, summarized here, finds that autistic adults can experience behavioral improvements through the right job.

The research puts new emphasis on the potential for adults with autism to develop and improve over their lifetimes, said study author Julie Lounds Taylor, an assistant professor of pediatrics at Vanderbilt University, in Nashville.

“We have assumed it’s really hard to budge autism symptoms in adulthood. Drugs are targeted to problems like acting out, for example,” she said. “But this study suggests that these adults need a place where they’re intellectually stimulated, and then we’ll see a reduction in symptoms.”

The study does not shy away from the challenges:

  • “Insight is one of the characteristics people with autism typically may not have…” In other words, they’re not going to say, “Hey Mom, that sushi chef training I’ve been looking into lines up well with my interests and aptitudes.”
  • “About 50 percent of adults with autism spend their time in sheltered settings, and a minority work in the community, according to Taylor. Most have trouble holding steady jobs, she added.”  Heh. Sheltered settings.  Joey going to a group home in 2015 is actually to shelter his aging parents from further wear and tear.  But he’s always been good at steadily creating laundry, broken appliances and other vocational opportunities for us.
  • “…restricted interests, repetitive behaviors and difficulty with social interactions.”  Never tried putting that on my resume.  But such qualities might make it stand out from the pile on HR’s desk.

But seriously, it is a hopeful bit of research, and care giving is all about the hope if you want to stay sane.  We are blessed with a number of local businesses who work with the public agencies to employ special needs people.  And there are some creative vocational training programs in town as well.

Here’s hoping that some of the local pizza places will create jobs for taste testers.  Joey would rise to the top of that career field.

From special needs kid to manhood

There are events and moments that mark stages of life. Today, Joey achieved a big one.

No, not a prom or a date. Certainly not engagement or marriage.

Nor was it the first day on a job.

And it dang sure wasn’t getting behind the wheel of a car.

No, today Joey came home and…

Signed his 1040-EZ for the Internal Revenue Service!IMG_20140128_183914_620

Sure, I filled it out. Melissa and I have complicated taxes and use a pro to prepare them. But Joey is a breeze, and the site offered by H & R Block was easy, fast and free. Still, I felt that Joey ought to sign for himself.

The day of assembling tax info went well. I was in a grateful mood. All kinds of people paying all kinds of taxes provide resources that help a special needs life and support those who provide the day to day care.

I made it a bit of a spiritual undertaking, leaning on a New Testament passage that isn’t preached all that often,

Pay to all what is owed to them: taxes to whom taxes are owed, revenue to whom revenue is owed, respect to whom respect is owed, honor to whom honor is owed. (Romans 13:7)

So we’re thankful tonight, for all of you taxpayers out there who have helped our lives in many ways. We honor you and we pay our taxes without grumbling.

And we’re thankful for Joey, who opens us up day in and and day out to see deeper content in all the chores. Even doing the taxes.

Another moving story

IMG_20130817_094812_403A team from our church went into action for our community Moving Assistance Program, which helps folks with limited financial means relocate into better living conditions.  It’s a great program that pulls the community together to serve many elderly, fixed-income, disabled and even abused neighbors.

I took our autistic son Joey along.  Although he was sleepy, due to being a teenager rather than autism, he was a trooper and did his part moving boxes and light furniture.

So props to Joey today, because he was a caregiver for our community.

I’m proud of him, and I think he knows it.  He’s sitting on the couch processing the experience, and chuckling.  Always a good sign.


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 can we do about the deficit?

Nah, not the federal or state budget follies.

I mean the emotion and energy deficits that care givers run.  What I call the fun deficit, where duties and demands outweigh life’s simple rewards.

Some care givers are at home all day, imprisoned just as much as those in their care, doing and doing and giving and giving and, uh, being-responsible-for-everything and being-responsible-for-everything.

Many of us, probably most of us,  spend chunks of time out in the workplace, which also calls on us to do and give and be-responsible-for-at-least-something.

The workplace can be a kind of respite for care givers, of course.  A place of order and boundaries that provides a break from chaos.  A place of not-so-demanding human contact that actually restores some of our energy and emotion.

It can be a drain, too.  A place where pressure is piled on and takes out what little emotion we have left.  In some cases, the work environment stinks as much as the care giving environment.  But the income and benefits, if available, are essential to the well being of those in our care.  Our options to quit and search for more satisfying work are limited, and in the present lousy job market “limited” is on steroids.

Leadership coach Dave Kraft raises some good questions about work:

Do you accept your lot, even though you may not always like your lot?  Are you thankful that you have work to do?  Do you rejoice in your toil, your work, or do you resent it and belong to the TGIF crowd?

Today I’m finding myself resentful of work.  I am thankful for income that meets our needs, especially in the spooky economy that’s out and about, but resentful of unpleasant,  unfulfilling workplace “stuff” that has me way over in “fun deficit.”  Life’s simple satisfactions are in short supply.  The world seems pushy, demanding and needy all the time.

And TGIF?  “F” is always in question for care givers.  You never know what you’re coming home to handle.  Sensing my “fun deficit,” Melissa’s made it a point to give me some peace and quiet and a bit of extra sleep the last few days, but today we have a sick kid on our hands and all the nagging chores that should have passed from our lives years ago.

The fun deficit can sneak up on any hard working person, care giver or not.  We all have demanding seasons.  But care giving seems to make it chronic.  And I’m resenting it big time today.  I would dump at least one of my two jobs right now if I could do it without depriving my family of necessities.

But like one of my long ago Army pals used to say, “I would if I could, but I can’t so I won’t.”


The workplace speaks

Tim here. I’m processing a bit of workplace criticism I took this week. It was one of those conversations where a friend brought up things “that people are saying.” Some of it was fine – disagreement about some workplace decisions. Stuff like that’s always cool for discussion and debate, although it’s not good communication to send it anonymously by a third party.

But then there were the sweeping critiques of me as an individual, including “putting too much time into the wrong things, and not enough into (the job).”

“The wrong things” is pretty clearly code for family care giving needs.

I’m not going to say much right now. Like I said, I’m processing, intellectually and emotionally. Holding a couple of jobs and care giving at home generally means that nobody gets 100% of what they want from me. I’ve owned that, in all venues, any number of times. And frankly, by most measures, the work I’m pulling off under less than ideal conditions is pretty darn good.

I’m sure I can’t be the first care giver to get grief for care giving. Anybody else catch this stuff in the workplace? How did you choose to deal with it?


One of my jobs (like a house full of kids, I know they’re all there but can’t keep track of them) had some customer service training the other night. It included a Myers Briggs personality test for each person in the department.

This particular test yields a four letter code describing a person’s natural and preferred ways of relating to the world. I’m not going to try and unpack it all here, as there are all kinds of letter combinations describing all kinds of people. I think I scored something like INFJ. Or LMNOP or something.

It’s enough for me to tell you that Myers Briggs, like other personality assessments I’ve taken for this, that and the other job, accurately shows me to be something of an introvert, refreshed by quiet, private time, preferring to think things through rather than just jump in and do, and much in favor of order over chaos. I like patterns and big ideas over micro details.

Yes, cue the laugh track. I’ve let my life become anything but… well… my life.

Quality quiet time is out the window. When I’m alone I usually give in to emotional exhaustion rather than enjoy the space. I spend most of my time reacting to others and handling the tasks and chores assigned me. It starts when the dog pokes at me to take her outside well before the morning alarm goes off, and pretty much keeps up until I sit in a stupor and fall asleep in the evening. The in between affords little time for big ideas; it’s mostly the kind of detailed chores that I enjoy about as much as our autistic kid enjoys using his fine motor skills (hint – he won’t hold a pencil).

No skateboarding.  Take off your belt for the metal detector.  Etc.

No skateboarding. Take off your belt for the metal detector. Etc.

Melissa isn’t in a place to blog right now, and I hope I don’t misrepresent her here – but I’m 99% sure that her Myers Briggs would show an extrovert, enjoying active time with lots of people. Exactly what her condition prevents. Her life isn’t her life, either.

It’s way too early on a Saturday morning. I can’t sleep and I’m sitting here talking out loud on the keyboard, trying to get at the stress and maybe purge a bit of it.

Whatever one’s personality type, illness and care giving can create a jail-like environment, locking one into a lifestyle deprived of natural preferences and behaviors while forcing submission to unwanted and uncomfortable routines.