Dominoes falling

Late last year I (Tim) noted here that I was stepping away from almost 30 years of pastoring churches.  I don’t know if that was the first domino to fall, but it is certainly one in a line of related changes ’round here.

dominosI stepped out of that emotionally draining work (really, another form of care giving) and, in short order, found myself less glum and stressed at home.  Melissa notes that I come home much perkier and roll better with intrusions like snow shoveling, bed frame collapses (I don’t think I bothered to blog that, but Joey’s bed frame required emergency disassembly and disposal) and putting VCRs out of their misery.

All of a sudden the chores called forth by care giving aren’t as burdensome.

I smile and laugh a lot more.

I sleep better.

I bumped into someone I hadn’t seen for a few months and the first words out of her mouth were, “Wow, you look younger.”

At the same time, I’ve taken a job that is doesn’t bleed me dry emotionally but has me away from the house more.  Which means…

Melissa is sentenced to longer stretches of each day alone with Joey and his needs, demands and antics.  That’s a big ol’ domino that fell on her.

Our calendar is a mess.  Doctor appointments set up months ago have to be rescheduled because I’m not available to watch or transport Joey.  Melissa and I enjoyed a weekly early dinner date – that’s been “suspended.”

Finances are… uh… adjusting to the change.

The dog and the cat seem to like the new arrangement because they get to go outside (dog) and sleep on the bed (cat) longer and later in the day.

It is likely that all the clickity-clacking will slow down in February.  Joey will start an extended day program that will give Melissa respite.  The financial reorganizing should be in shape by that pay cycle.  Who knows how many decades younger I’ll look after a few more weeks without infusions of toxic stress.

Care givers snort when we hear the advice, “You have to take care of yourself.”  I finally got around to doing so via a big, abrupt (and way overdue) change that’s certainly improved my daily quality of life, but it’s caused chain reactions with mixed outcomes for the rest of the family and others in our lives.

Sometimes taking care of ourselves stinks for those around us.  But if we don’t do some things to keep ourselves well, we will simply fall down.  Not with the click of a domino, touching and moving others, but in an inert heap that’s no good for ourselves or those in our care.

 

 

 

 

 

A catered affair

Melissa, Joey and I had a wonderful evening last Saturday.

I’ve tried to keep it out of this blog so as not to weird people out, but I’m an ordained minister in the church. For the moment. More about that later.

Claudia Tim JoeyBack to last Saturday. I baptized some good friends’ recently adopted daughter. After a joyful service, during which Joey decided he didn’t want to sit and came and stood by me like some kind of test proctor while I was preaching (the church was packed but they all rolled with this just fine), we went over to our friends’ home for a celebration.

It was a big party, as the new mom & dad both come from large families, have lots of friends, employees and professional peers.

Food and drink were catered. And – I get misty eyed relating this – our friends took the trouble to have the caterer prepare a pepperoni pizza just for Joey. And they had cans of root beer for him amidst the wine selections.

Joey found a comfy spot on a couch and didn’t want to go find a table at which to sit. So the caterers actually took the trouble – while serving over 100 guests – to bring him plates of pizza where he sat. Melissa helped him balance things on his lap (and hers) and he was a happy lad, as you see here. Joey smiley

The kindness of our friends, the caterers and everybody else that night was a precious gift to us. Last baptism I’ll be doing at that church. Or maybe last one, period. It was a positive closure for our family.

I’m stepping out of the pulpit. Don’t know if that’s for awhile or for good. That’s something about which God and I need time to talk.

It’s enough to say here that I’m emotionally run down. That’s putting it mildly. Good care giving requires the heart and churches can drain (or cap, or poison) the emotional well.

A bit scary right now, of course. Needing to overhaul finances, seek new income, etc. No crisis of faith – I’m still praying and God seems as close and loving as ever. But your prayers are appreciated as our family goes through all this change.

We’ll still be blogging here, because care giving stinks sometimes but is in our hearts always.

Donuts, Ghosts and Stuff

Did we go on a glamorous vacation? Haven’t been blogging because we’ve been on a cruise ship or at a mountain top resort?

Nah.

There’s a bunch of stuff to report. None of it is out of the ordinary. It is stuff that all people – not just caregivers – encounter. But care giving amplifies it. That little extra need, emergency or other bit of stress takes all of life’s other demands and makes them into a stinky pile.

So, donuts. Well, not donuts – The Donut Hole. Those who entrust some of their health needs to Medicare cringe at the term. It’s called a “coverage gap” which translates as a bureaucratic game that makes total sense to some office wonk someplace.

You go in to pick up your monthly prescription refill and, voila, the smiling pharmacist tells you “You’re in the donut hole.” It’s like landing on a bad square in a board game – you go backwards, or lose a turn, or, in real life, you lose a bunch of money.

We went to pick up two (yes, two) bottles of meds and dropped about $400.

That’s the donuts part. But stay with me, I have to tell you about the Ghost. And this will all tie together and explain why we haven’t been blogging.

We bought this house from a widow grieving the cancer death of her husband, Brian. Brian, like so many South Dakotans, believed in doing all of his own home repair and maintenance work. Seriously, there are true tales of guys mowing their lawns twice on their days off, because they want the yard to be just right. And they consider that fun.

The late Brian considered himself an electrician, plumber and more. Oh, so much more. Melissa and I started joking about the “Ghost of Brian” when various house and yard glitches began to manifest, generally tied to work Brian had done.

In the last two months, Brian reached deeply into his bag of tricks:

He’d put his own custom shelving into the master bedroom closet. Of course he simply screwed it into drywall rather than anchor it. Crash, boom, kerplunk went the whole closet. We picked it all up, cleaned it out and called in some pros. $500 later, it’s a pretty nice closet.

A massive water bill and constant swamp spot in the back yard revealed that Brian’s DIY sprinkler system had a leak. We had some savvy friends try to fix it, but the leak continued. We finally brought in a sprinkler pro on a neighbor’s recommendation, and he was a grandfather with decades of experience. He had to make trip after trip to finally diagnose and fix the problem, which included things like valve #1 sending water to sprinkler station 6, valve #2 to station 3, etc.

We found the sprinkler pro standing in our driveway, smoking a cigarette with a far away gaze like he’d just been in combat. He got it fixed… but that was another $300 to go with Brian’s magic closet and the donut hole.

Now the one fixture that works in Brian’s custom light array in the bathroom is flickering on and off. It was cutting out the other day and Melissa said, “Brian, knock it off.” It seems to be working for the moment, but I’m sure it’s an electrician visit waiting to happen.

Then there’s stuff – Joey’s an adult and programs that were subsidized while he was a minor are on our dime now. His afternoon “after school” program is now twice what we used to pay. His transportation costs are no longer reimbursed.

What has all of this to do with a lack of blogging? Well, I’ve taken a second job. There’s very little time to put words together.

Multiple jobs are a South Dakota thing, too. Everybody here has two or more jobs, like these folks,

That leaves Melissa with almost all of the Joey duty, and the care giving hits just keep on coming:

He’s figured out that he’s bigger than her and can use that to resist cooperating with her;

He chit chats with himself and flings repetitive questions and phrases at her until it’s like he’s drilled holes in her head. This is brutal on the weekends, when he’s home all day and the din never stops.

Plus we just got the deflating news that the wait list for Joey’s residential placement is looooooooooong and moving slowly because they can’t find enough staff to open more group homes. Care giving stinks so much that you can’t even pay people to do it.

Financially, our best move is for me to drop dead. I’m super well insured, and I’m vested in a pension through my primary job that will provide monthly checks to Melissa even when I’m kaput. (I have several wives in other states who don’t know about this so please keep it to yourselves).

But I’m stubborn and keep hanging in there. Stupid hyper-responsible caregiver personality.

Dr. Who moment, minus the time travel

I made a run to the market this morning.

As I pushed my cart somewhere between bread and frozen stuff, a store manager came up to me.

“I haven’t seen your ‘helper’ with you in awhile. I hope he’s doing OK.”

By “helper,” he meant Joey, who used to accompany me to the store. But in his teenage/young adult years, he’s taken to sleeping in on the weekends, which is just his age, not autism. So now I shop solo.

“He’s fine,” I explained, along with the stuff about his late sleeping.

The manager, to whom I’d never spoken before today, expressed his pleasure at that news, then went into an extended riff on what a good dad I am.

I held it together, but I could have shed a few tears of joy. The last month has been less than pleasant for me – in fact, some days were miserable. We were clubbed with ridiculously high, out of budget bills for medications and home furnace repair. In other news, folks with whom I’d been on good terms became unhappy with me and were arrogant and unkind in expressing it. Work sucked for about a week. And that’s for starters. I could share TMI but some of it is too painful to type.

So this stranger, basically saying, “Hey, over the last couple of years I’ve been watching you, and you are a good guy” was like medicine. Or at least a soothing shot of Tequila (good stuff only, I don’t drink swill).

Good spiritual advice is to never, ever get so hung up on compliments that you start to believe your own press releases. But I didn’t take this praise unrealistically – I know my failings as a dad but I am also aware that I’ve done things and endured in situations that send plenty of other men running out the door. And Joey’s happiness and well being is something to which I’ve contributed considerably.

I’ve never watched the show Dr. Who (that confession causes a number of my friends to roll their eyes), but someone recently shared this clip from the series. The Doctor is a time traveler, and in this scene, he’s fetched mentally tormented artist Vincent Van Gogh from the past and taken him to a present day museum display of his work. What happens is… well, watch the video clip. It’s just a couple of minutes long:

We all need affirmation. It is a blessing when it comes in some out-of-the-blue intrusion of grace.

I believe that life is full of dress rehearsals for eternal things. Coming up a few Sundays from now, many churches will hear ultimate words of affirmation,

His master said to him, “Well done, good and faithful servant. You have been faithful over a little; I will set you over much. Enter into the joy of your master.” (Matthew 25:21 ESV)

The great and eternal affirmation will come for those who did “holy” things unknowingly while muddling through “normal” stuff. Grace, out of the blue, affirming that in ways known but to Him, God made us vessels of his grace to help others through the painful world that is passing away, and toward eternal joy.

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…

 

IMG_20140909_081113_485

 

 

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

 

 

IMG_20140909_081130_234

 

 

 

…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.”

HUELGA!

huelga_huerta

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.

Next?

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.