Echoes of Joe

If you’re new to the blog you might want to check out this recent post. It will help you understand this one.

The noises that Joey generates stay with us, even when we’re not around him.

There’s a quiet early service at our church. I was there, looking forward to the tranquility that comes with its worship style. I was really looking forward to it – Joey threw up his breakfast and I was frazzled before I could even put on my socks and shoes.

So I’m there settling into the peaceful sanctuary, when all of a sudden there’s a din. It’s some of the regulars – sweet, faithful older folks who get there early, go downstairs to the kitchen, get a head start on coffee drinking, and are LOUD. Loud greetings, loud small talk, loud laughter.

I found myself winding up like a spring. Tension set into my jaw, neck, shoulders and lower back.

These dear people have their pre-service coffee klatch every week. This isn’t new. But the recent Joey noise seemed to amplify it. The sound penetrated me and shook my soul.

A few years ago, I was on an eliptical trainer at a local gym. The row of cardio contraptions looked out on a slough, with lots of birds by day and fireflies on summer nights.

The local metal station was on the radio, fueling all the pushing and pumping. I didn’t mind – the music, the view, and the physical exertion were all elements of a brief escape.

All of a sudden, there was a BOOM. The tension fused neck and back muscles, bones and connective tissue in a mass spasm of tension.

It was some of the super buff guys working the free weights. The would push massive amounts of steel and then simply drop it to the floor when their muscles fatigued. No matter how many warnings the gym owners posted, they kept on a-boomin’.

When I calmed down, I realized that the sound was not new to my gym experience. Gyms are loud (good ones, anyway). But the BOOM sounded like Joey hitting the floor during a seizure. The noise of his condition had permeated my physiology.

I tell people that when Joey finally moves into residential care, I will have a permanent twitch. I’ll be hearing and feeling his presence in all kinds of ways, well after he’s out of the house.

The din is back

Joey is saying stuff at a fairly high volume and it’s been going on for about 90 minutes.

I’m not even trying to decipher it.  Sounds like a string of movie lines but I really don’t care because it is so far beyond cute or funny.  Yes, lots of his mannerisms are cute and funny.  What the dictionary calls

a loud continued noise; especially : a welter of discordant sounds

is not.

Fortunately it’s not late. I’m not trying to sleep. So it is annoying (well, maybe that’s too light a word) but it hasn’t escalated to torture (and that’s not too strong a word for what the din can do in combination with sleep deprivation).

The dog’s taken to scratching herself like Thumper the rabbit in Disney’s Bambi. She’s about 75 lbs. and the pounding sounds like someone knocking at the front door with considerable aggression.

A symbiosis of din. That’s what I have here tonight with the kid and the dog.

Who was that masked man?

Or woman.

We received a very kind note and generous gift from a reader, thanking us for one of our recent posts.

The person was anonymous… although the postmark was from ’round these parts.

So just posting to say THANK YOU!  We will enjoy a date night and give thanks for you.  May God bless and return your kindness in many wonderful, unexpected ways.

That time I called the cops – on myself.

Hard memories and emotional impressions came up when I saw this video:

Our son, also a Joey, stopped having meltdowns quite awhile ago. Medication was a big part of that. We’ve eased him off of several meds over the years, but we maintain a dose for aggression control, just in case. Age mellows some of this stuff as well, at least for some kids. We think that’s true of Joey, but we’re not getting rid of the med just the same.

During one terrible explosion of his frustration, it took my wife, our older son and me to pin Joey down and calm him. We were slapped, kicked, scratched and bit in the process.

Another time, Joey lost it because a computer froze. He attacked me with a knotted rope dog toy.

There are also plenty of tales of broken property. He seemed to have a knack for destroying keepsakes when angry.

Anyway, my mind is starting to flood with these ugly memories. As I relate one, others come rushing in. I can feel my breathing change and muscles tensing as I type this. So let me just get to the one I most want to share and then I’ll stop.

A few years ago, Joey had one of his sleepless nights. He still has these, but I’ve downgraded them from menacing to just annoying. He turns on lights and sits up watching movies these days, but a few years ago he would wake up agitated and pound around the house, repeat phrases with great distress in his voice, burst into our bedroom to ask repetitive questions, beat on his chest with an open hand, clap his hands (which in the dead of night hits the ears like a rifle’s report), and generally raise hell.

Melissa and I would take turns staying up with him, although it wasn’t like the partner who stayed in bed got much sleep.

During this particular night, it was my turn to get up. I tried to calm Joey, to connect with him around the things he was saying over and over, to do something, anything, to stop the din of noise and emotion.

Somewhere in the wee hours, my focus shifted. I forgot about helping Joey. I just got angry.

Not a surprise, really. The late actor James Gandolfini advised a group of drama students that one way to prepare to play an angry character or scene is to deprive yourself of sleep. The anger will be plenty authentic when the camera rolls.

I couldn’t yell – I had enough presence of mind to avoid terrifying Melissa out of what little, ragged sleep she might have been getting.

The anger that couldn’t come out in words and volume started flooding my body. I was on the verge of my own meltdown. I perceived Joey as malevolent, as purposely tormenting me.

I was going to slug him.

I think I prayed, not out loud but deep down inside myself. By God’s grace, I went for the phone instead of after Joey. I called 911. I don’t remember what I said, except I got across that I was losing control of a situation at my house and it was heading for violence.

Two Sioux Falls Police officers showed up. I don’t remember what we said to one another. They were quiet enough that Melissa didn’t wake up. The were calm and courteous.

I sat on the couch, eventually fighting a desire to cry instead of a rage to attack. They stuck around – I don’t know how long – until they were sure that things were calm enough for them to leave. Joey finally went back to bed. I sat on the couch in the dark for a long time.

That’s the story. I don’t know why I’m moved to share it except in the hope that someone who reads it will, if in a similar situation, make the choice to call for help. To call for the spouse in the next room like in that video, or to call for first responders like I did. Don’t be ashamed. We all have limits and we all have times, great and small, where we need help.

In my distress I called upon the LORD;
to my God I cried for help.
From his temple he heard my voice,
and my cry to him reached his ears.
(Psalm 18:6 ESV)

And they used to be such happy little caregivers

Let me see if I can put this together for you.  There are a bunch of things happening, and they are like jigsaw puzzle pieces, needing to be connected.

First, there’s a bunch of good stuff.  A long desired refinance of our home and some other “found money” have us in a much stronger financial position.  Because of this, we’ve

  • tossed a sagging, smelly, cat clawed couch and put new furniture in our front room.  We’re ready to resume having people over after a looooooooooooooooong period of isolation;
  • purchased a quality dishwasher.  The old one gave up the ghost years ago, and we’ve been hand washing the piles for longer than either of us care to recognize;
  • replaced a toilet.  The one across from Joey’s room, which is the one guests would use, was saving the planet by barely flushing.  We are having an actual flushing version installed this week.

Meanwhile,  a June hailstorm damaged our roof.  The roof was old enough that we would have had to replace it in a few years, but now it’s being paid for by insurance.  So thousands of dollars in a retirement account can now be held onto for, I don’t know, a freaking vacation?

As the improvements go on, we are finding ourselves less tolerant of the messes to which we’ve submitted lo these many years.

We’re sick of the smelly pets.  We are animal lovers but when this dog and this cat pass on, Melissa and I are mutually pledged to kill the spouse who suggests replacing them.  Sick of the hair, sick of the “accidents,” sick of the smells, sick of early morning feedings and twilight walks among the mosquitoes of summer and the subzero winter windchills.

We had Joey’s last EVER IEP and we’ll be barely able to contain ourselves until the calendar flips to June 30, 2015, when he is eligible for residential placement.  We hope and pray that our love for Joey has shone though on this blog.  We adore him and delight in him so often… but we are so #^%()^ ready to have some semblance of a middle aged marriage.

We’ve been eating sensibly and frugally.  But last week I messaged Melissa to say, “Let’s just go out tonight.”  The house had been cleaned, the roofers were up top pounding away, and I simply didn’t feel like cooking and cleaning up or listening to the hammering and thumping (Melissa had the worst of it – I was out of the house most of the day at work and she endured the noise).  And Melissa, who is the most zealous about diet and where the money goes these days, didn’t hesitate to agree with my idea.

We’re tired of it all, almost angrily tired, if that makes any sense.  We are so ready to be done with a lot of the 24/7/365 chores that dominate and warp caregivers’ lives, and which make all of life’s normal burdens seem to weigh a lot more.

It’s our God-given work, about that we have no doubt.  But like our Lord in the Garden of Gethsemane, we would rather the task just pass out of our hands.

Oh, we’ll get it done, with the Lord’s help.  But don’t expect us to be perky or graceful about it over the coming months. The deferred maintenance on the house is just a symptom of deferred maintenance on our selves.

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.”



Flagged for future reference

So we decided to replace the toilet in the bathroom Joey uses.  It’s one of those save-the-planet-by-doing-away-with-effective-flushing-into-the-sewer models.  Tired of flushing it multiple times or having to plunge it just about every time it is used.  And it is the “guest bathroom” when we have company, and that definitely harshes the soiree.  



<— We thought about using this simple system, but broke down after Joey’s LAST IEP EVER last week.  We decided we deserved a treat after umpteen years of negotiations with school districts.  It was a bit too early for dinner, so we said, “Hey, let’s get a toilet that works.”

We headed by the plumbing and heating place.  Did I mention that Joey came with?  He was a bit wound up from the IEP.  Sitting through a meeting is not a favored activity for folks with autism.  But he walked into the display room with us, past the claw foot bathtub and brass fixtures and sinks, to a gleaming row of toilets.

As the salesperson was showing us models that fit our specs, like flushing, Joey brushed past me.  His hands were on his waistband… he was heading for a display toilet to – uh – test drive it.


I stopped him.  Nothing gross or embarrassing happened.  We bought the toilet and went home.

Flagged for future reference: don’t bring Joey to the toilet store.



Why me?

In the course of a longer conversation, Melissa said, “I know you don’t like all the care giving stuff you have to do.”  

There was no arguing the point; she was right.  It gets me grumpy from time to time.  Escape fantasies come and go, sometimes in my sleeping dreams, not just daydreams.  That tells you how deep the resistance and resentment can run.

Of course the mind sometimes wonders if care giving is a cosmic punishment for past failures and bad deeds.  Some of us are more prone to that thinking than others, but I wonder if anyone is 100% immune.

Inspiration is important.  Sometimes that takes the shape of a pep talk or a kind word that provides a bit of strength.

Other times, it comes as a fresh perspective that makes the burden much lighter.  I got a bit of that today,

“Well see here, daughters, what He (God) gave to the one (Jesus) he loved most.  By that we understand what His will is.  For these are His gifts in this world.  He gives according to the love He bears us: to those He loves more, He gives more of these gifts; to those He loves less, He gives less.  And He gives according to the courage He sees in each and the love each has for His Majesty.  He will see that whoever loves Him much will be able to suffer much for Him; whoever loves Him little will be capable of little.   I myself hold that the measure for being able to bear a large or small cross is love.”  Teresa of Avila, The Way of Perfection (1566) 32.6

Is it possible, despite my grubby feelings, that I am both an object and a great vessel of divine love?  

Maybe care giving isn’t a sentence imposed but a great honor bestowed.

I have frequent thoughts that I’m not “doing enough” of what I “should be doing” because care giving saps a good deal of energy (in my case, emotional and mental energy – the physical demands aren’t all that bad).  But I find myself less able to throw myself at all kinds of workplace and other stuff, and I feel like I’m just taking up space in God’s world, not fulfilling some great divine plan for my life.

Might it be that I’m right where God wants me, doing just what God wants?  That care giving itself is the great divine plan for this season of my life – maybe even for my whole life?  And (big leap here) that God is pleased with this clumsy, imperfect, never finished and often stinky stuff I offer each day?

I know, lots of question marks in this.  Don’t want to insist on an answer.  But I like the thoughts that are in my head just now, even if they are just hopeful questions.