Sleep in heavenly peace

Joey Christmas Tree Nap 2014

He’s not easy to see back there in the shadows on the black love seat.

But that’s Joey on the Saturday before Christmas, enjoying his day off with a snooze.

A bit before that, he’d been bugging Melissa in one of his, “Hey, I’m not in a good mood so do something” routines, with a distressed face, invasion of her personal space, grabbing and tugging of her hand but no words to give her some idea of what to do.

But she read his mind.  “Do you want dad to turn on the Christmas Tree lights?”

I have them on a timer that leaves them off most of the day.  But with it cloudy and wintry outside, I was fine flicking the override switch and letting the tree glow.

Sure enough, that’s what he wanted.  He took over the love seat (no good deed goes unpunished, so he crowded Melissa off).  He stared at the tree for a good, long while.  We got on with other things until I noticed him nestled in for a nap and took the picture.

There are the challenges that people with special needs bring to the holidays, as this dad points out.  The other side is that people with special needs often enjoy simple things, like tree lights in a dark, quiet room. They won’t be miffed if they don’t get a pile of disposable, dust catching crud wrapped up under the tree.  They won’t calculate how much you spent as a measure of love and they won’t hold some perceived slight against you for the next ten holidays.

A couple of requested videos will show up under the tree for Joey (right before we’re ready to open ’em on Christmas morning – otherwise he’ll open ALL the presents to find the one or two that are his).  Meanwhile, he’s been enjoying the glow of the tree and our snuggling together each evening for a bit of the Advent calendar (each day has a mini-book about an event leading up to Jesus’ birth).  He’s especially happy to have his brother and sister-in-law here for Christmas.  He even vocalized anticipation of that – “Tim will be here soon.”  He gets Christmas way better than a lot of people.

We wish all of you a Merry Christmas.

Epic fail

Yesterday Joey and I went to the Sioux Area Metro offices to renew his Paratransit eligibility.

Public transit in Sioux Falls is mainly fixed route buses.  But for folks who cannot safely or reliably go to a bus stop, transact fare, exit at the appropriate stop and/or walk to their destination, small Paratransit buses will pick them up and drop them off door to door.

IMG_20131107_074901_051Joey likes the Paratransit buses. They are tidy, comfy and the drivers are quite nice.

But to qualify, he has to fail the interview with the Metro administration.  He has to demonstrate that he can’t use the fixed route bus system.

He failed with flying colors.  An administrator and an occupational therapist (OT) met with us.  They asked Joey a variety of questions and put him through some exercises.  Among various failures:

  •  When shown a picture of a policeman and some random guy, and asked to pick who he would ask for help, he picked random guy.
  • When shown a picture of a random lady on a bus, and asked if Joey would go with her if she said, “Get off the bus and come with me,” Joey said, “Yes.”
  • Shown various pictures of bus interiors with passengers, shopping bags and open seats, and asked, “Where would Joey sit?”, he picked occupied seats several times.  Melissa and I talked about this later, and we think that his perspective is, “I want the seat with the best view.  If it’s occupied, move whatever/whoever’s there.”
  • Route Numbers and times – even digital times – are an abstraction to him.

Now, it wasn’t all failure.  He knows a few things:

  • Shown pictures of intersections with and without cars, and asked, “Joey, when is it OK to walk across the street?”, he reliably points to the “no cars coming” scenario.  (He can’t do the same with “Walk/Don’t Walk” signs or symbols – his knowledge is applied rather than abstract).
  • Shown an array of pictures of Sioux Falls locations, and told, “Joey, today we are going to… (four locations are pointed out),” Joey could recall 3 out of 4 destinations (one was a pizza place, so that’s no surprise).
  • He can walk from his front door and up the bus steps without assistance (well, except a parent to make sure he puts on his coat.)

The folks were really patient and gentle.  There was supposed to be an outdoor component but they waived that as freezing rain arrived.

The administrator smiled and said, “I think Joey is going to qualify for a permanent pass instead of an annual one.”  This will mean a written application every few years, and no more of the interviews and exercises.

What kind of warped dad is glad that his kid failed a test?  The caregiving kind, baby.  The caregiving kind.

Enhanced home entertainment techniques

So we got a VCR to replace the defunct one lamented in yesterday’s post.

Joey became his happy, smiley self.  The anxiety that he shared so generously with mom and dad last night went away.

I did try to show him the control panel differences on the new contraption, but he just said, “Bye, DAAD?!?!?!?!?,” which is Joey-speak for “I’d like to tinker with this for myself.”  So we know his Y-chromosomal stuff works.

But the quiet was short lived.  No, he wasn’t in our room vocalizing distress.  Instead, he sat in his room flipping around VHS cassettes and popping them in and out of the machine, enjoying short clips from as many as he could.

The noise was about as insufferable as the nagging from the night before.

But he got his fill and he’s now sleeping in the glow of old TV through which the videos show.  I’ll go to bed if I can unwind.

I know the Torture Report ain’t funny, but…

The Senate Intelligence Committee’s report on CIA interrogation of terror suspects is serious business and I don’t mean to be flippant.

But in an unwelcome bit of irony, Melissa and I are resonating with at least one torture technique,

In exhaustive detail, the report gives a macabre accounting of some of the grisliest techniques that the C.I.A. used to torture and imprison terrorism suspects. Detainees were deprived of sleep… One clandestine officer described the prison as a “dungeon…”

IMG_20141209_220144_165It’s like this: Joey’s excessive button-pushing finally killed his VCR.  I’ve tried all of the first aid I know, and there’s no fixing it.

So Melissa and I are suffering sleep deprivation as Joey keeps coming into our room – which now feels quite the dungeon – to complain and negotiate,

“The TV is BROKEN?!?!?!?!” (it’s not… but the VCR is.)

“Dad will fix the black TV.”

“Tomorrow dad will go to the store.”

Seriously, Joey’s anxious.  So we are anxious.  No, we are over into stressed.  We’ve tried finding a movie he likes on cable.  No relief.  He keeps coming in to lament the inoperative VCR and nag us about a remedy.

He won’t sleep.  He keeps talking to himself across the hall, then coming over here to lay into us.

Sleep deprivation is torture.  We try to make light of it but care givers suffer some of the same stuff that prisoners catch at the hands of sadistic jailers or interrogators.

Add to it life’s usual crap.  Hundreds of dollars in copays on some of the family medications, the dog needing to see the vet, an empty ticket book for Joey’s Paratransit bus, drywall work in a bedroom, yada yada yada as Seinfeld’s crew liked to say.

I know, I know.   That last paragraph happens to everybody.  But add some banging doors, flashing lights and an agitated voice in the middle of the night, and it takes it to a whole new place.  And it ain’t a pretty one.

Doesn’t God care about caregivers?

Now as they went on their way, Jesus entered a village. And a woman named Martha welcomed him into her house. And she had a sister called Mary, who sat at the Lord’s feet and listened to his teaching. But Martha was distracted with much serving. And she went up to him and said, “Lord, do you not care that my sister has left me to serve alone? Tell her then to help me.” But the Lord answered her, “Martha, Martha, you are anxious and troubled about many things, but one thing is necessary. Mary has chosen the good portion, which will not be taken away from her.” (Luke 10:38-42 English Standard Version)

Martha is a caregiver.

  • The fact that it is “her house” is unusual for the time. A woman lived in a house identified as her father’s until she married, and then lived in her husband’s house.  Martha is in charge of a house, for reasons not explained.
  • We know from the Gospel of John that she had a brother, Lazarus, who died. This suggests that he was either chronically ill or taken by a terminal illness, since he should have been heading the family in the absence of a dad or a husband.
  • She had a younger sister named Mary.
  • She practiced the hospitality expected by her culture, welcoming travelers in for shelter and food.  A Rabbi named Jesus and his students were frequent guests.

So Luke describes this scene in which Jesus and his students – disciples – are in Martha’s house.  Her God and her desert culture demand that she give them rest, food and drink.  As a devout woman and one accustomed to caring for others, she sets about her duties.  The story tells us that there is much serving – Jesus has a big group with him and the work is to the point that Martha is overwhelmed.

Her kid sister Mary is obligated to help with this work.  But Mary sits there as if one of Jesus’ disciples.  An embarrassing situation is developing.  Girls are not allowed to be rabbinic students.  She is neglecting her duty and assuming a role that is not permitted, while dedicated Martha struggles to do the right thing and provide care.

Finally, Martha has enough and blurts out, “Lord, do you not care that my sister has left me to serve alone? Tell her then to help me.”

So many caregivers ask variations on this question.  Why don’t my siblings help with my aging parents?  Why isn’t my spouse more hands-on with our special needs kid?  Why do people turn away instead of help?  Doesn’t God care about this load I carry?

Jesus does not judge Martha.  Instead of a dismissive, “See here, woman,” he calls her by name, twice.  “Martha, Martha…”  I imagine that it was a soft spoken response to reach through her agitation.

He recognizes and honors what she’s going through.  “…you are anxious and troubled about many things.”  He seems to say, “It’s more than just the dinner, isn’t it?  There’s a dying brother and a baby sister and God-knows-what painful events that dumped this whole family on you.  And now my friends and I have piled into your house.”

Preachers often treat what’s next as a rebuke of Martha.  “…one thing is necessary. Mary has chosen the good portion, which will not be taken away from her.”  The good portion – Isn’t this more likely a bit of tension cutting humor that Jesus offers?  Martha is struggling to put out heaping servings of food for this bunch, but Jesus says there’s a “better portion” to be had by just sitting down like Mary, and just like Jesus himself and the other guests.

Jesus cares about Martha enough to waive his entitlement as a guest and as a man of that time.  He’s telling her that feeding his pals and him can wait.  Martha, too, can do the scandalous thing and sit down and hear about the eternal love that God has for her.  That’s the good portion, the only thing necessary.  She doesn’t need to kill herself for others.  She’s worthy of care – divine care at that.

Fast forward back to our own day.  Holidays are at hand.  Caregivers will be anxious and troubled about many things, trying to make things pleasant for others while unpleasant demands pile up and pile on.

Like Martha, try to hear a quiet voice speaking your name, letting you know that it’s OK to be still.  Scandalously still.  Tradition-breaking, rule-bending still, if just for awhile.

Because Jesus is saying that God does know and care about you.