Sleeping on the couch

No, Melissa and I are not having a fight.

Joey moved out to the couch this week.  He does this every year when the Christmas decor goes up.  He likes to snooze by the light of the Christmas tree.  I blogged a picture of that two years ago.

The rhythms of family life are meaningful.  Autism craves order in both macro and micro forms.  So not just daily routines but seasonal and annual cycles can be our friends.

Another important aspect of Joey’s annual relocation is that physical environment, even with some quirky changes, can make a difference in the quality of life for a person with autism.

Here’s a useful page from Australia about Workplace Modification.  Practical adaptations, such as work table heights, wider aisles for wheelchairs and the like are obvious (or should be).

But so are aesthetic or other tweaks that make the work space more enjoyable.  One agency we visited here had Christmas lights rigged to come on each time the worker completed a particular task.  (Note: such adaptations are highly individual, because the flashing light that gives pleasure to one person can be a seizure trigger for another).

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Not Joey’s actual feet.  Reenactment by a trained professional.

 

Holidays are times when most of us modify our homes.  They are an opportunity to discover changes that make life more comfortable and pleasurable for those in our care.

 

 

Truth and fiction

Reading is one of my pleasures.  If you’re a caregiver, it is important to squeeze in times of refreshment.  Holidays, right?  Yeah, right.  Ha ha ha.

In stolen moments I’m  reading a well researched and moving historical fiction called Saratoga Letters.  It’s set in the American Revolution and the present, and has captivating characters, suspense, romance and all that good stuff that caregivers sometimes forget exist.  (It has action, too, but maybe we have too much of that?)

Yesterday I came to a passage that definitely leaned more toward truth than fiction.  It will ring all too familiar if you’re a caregiver:

There was too much work to be done.  None of the caregivers took time for rest.  Neither would she.

Bleary-eyed surgeons and women bumped into each other as they tended the wounded and ill.  Someone brought ale for the staff, but Abigail wasn’t certain who it was.  She merely guzzled the offering and returned to her tasks.  She forced herself to keep working…

Yes, it’s a military field hospital.  But doesn’t it have all the realities in which caregivers are immersed for long seasons?

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    Tom the Caregiving Turkey on a typical day.

  • Too much to do
  • Lack of sleep
  • Tiredness leading to mishaps (bumping into others, forgetting appointments, dropping/breaking stuff, burning meals, etc. etc. etc.)
  • Losing awareness of others who aren’t the focus of our care
  • Food and drink gulped down on the run
  • Working when body/mind/heart/spirit want to shut down.

We are very blessed that friends are having us over for Thanksgiving.  It is so wonderful to be with people who “get” our son and who are giving us a fun and refreshing evening.

But we know that so many caregivers are going to struggle, because holidays can be a war zone every bit as chaotic as that Revolutionary field hospital.

If you have a chance to check it out, here’s Denise Brown’s helpful Holiday Survival Guide page at caregiving.com.  It is a great site all around and we hope that there’s something there that makes your Thanksgiving give to you as you give to others.

Let’s be clear

So Saturday I was grumbling and getting ready to clear heavy snow.  Not deep snow, but weighty.  Snow comes down fluffy when we’re lucky but dense when we are not (although the dense stuff is important to watering the earth so there’s that.)

20161119_104250Anyway I got home from an errand to see this:

“Well big deal,” you say, “it’s a sidewalk.”

Yes, but it’s a clear sidewalk.

See the law here is that you have 48 hours after a snowfall of 2 inches or more to clear the sidewalk in front of your property.  Which means the clock was ticking on a precious day off and I was going to have to spend it out in the cold pushing snow here and there.

Except that a neighbor cleared my sidewalk.  He was out clearing his and just kept on going to clear mine.

Folks, I need to tell you that seemingly small things like this loom very large in caregivers’ lives.  Now, instead of pushing snow on my day off, I’m reading a novel and watching football and going to have a leisurely dinner with my wife.

Yes, we would all like to inherit the proverbial million dollars or be otherwise over-the-top-blessed.  But for caregivers, let’s be clear, a chore taken over by some other person feels like that million bucks.  It is respite and refreshment.

If you know caregivers, you don’t need to do their most Herculean tasks to be a hero to them.  Just knock out some stupid little annoying chore, and flex.  You’ll be admired and appreciated beyond what you can imagine.

Let It Snow. For Joe.

After a lingering lovely autumn, we caught the first blast of winter yesterday.

For me, it means clearing snow (and this time it’s the wet, heavy stuff rather than the light fluffy variety).  If you don’t live in a snowy part of the world, you might not know that this is going to have ambulances rolling because out of shape people suddenly plunge into heavy work and the ERs do Black Friday worthy business.

It means suiting up to go out in the cold and work (uphill, both ways) while my relatively healthy, 22 year old son is in the warm house in shorts and a t-shirt watching movies and surfing the internet.

joe-snow-pathAs you can see from this pic, I got home from work yesterday and cleared a path for him to get in without trudging.  His bus driver spotted it and pulled up to open the door right over my perfectly positioned trail head, which was kinda cool.  I mean, I’m a caregiver and I want everything to come out just right, right?

With Joey safely home, Melissa and I made our first fire of the season and that made for a cozy evening.  Well, along with hard cider.

Joey loves winter.  It’s a math formula where A = Winter, B = Holiday Decor and Traditions and C = PRESENTS (mainly videos).  A + B = C.

Unlike adult sullen acceptance of winter, Joey lights up.  In his shorts and t-shirt in a warm house, of course, but he just lights up when the season changes.  Over the years, autism’s craving for predictable patterns makes the run up to Christmas (aka Winter) a time that he anticipates and in which he even participates.

Melissa gets him to articulate his Christmas list and writes it down for him.  It is funny to come into the front room and finding him sitting on the couch reviewing it, with all the earnestness of Santa checking the naughty and nice lists.

We keep an Advent Calendar, and Joey is already saying “First we have to read the Christmas books.”  The calendar has mini books that unfold the story of Jesus’ birth and then hang on the Christmas tree.  Joey reads more of the words for himself each year and picks the spot for each book on the tree.  That’s been a delight for us.

OK, OK, I’m sitting here drinking good coffee and musing and typing.  Time to man-up, uh, I mean, caregiver-up and do stuff like clearing snow.  For now I’ll just note that Joey’s enjoyment of this season is a precious part of our lives.

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High Fives All Around!

Just caught this on Twitter:

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We have a month of our own!  Did you know that?  Now quit gloating and clean up some bodily wastes or go to an IEP or do some laundry or something, dang it.

But seriously, we all need some affirmation in this care thing we do.  So take a deep breath and know that you are valuable in ways that those in your care, those watching and even your own heart and mind might not be able to articulate.

God bless you.

You can read more about National Caregivers Month here.

Permanent Markers

After the death of her spouse, the woman who cared for him through his terminal illness wondered if she could still attend her caregiver support group.

Nobody in the group had to think twice – “Of course you can come here.  You’re always one of us.”

My wife and I wonder what life will be like once our son with autism moves into a group home.  I think it safe to say that he’s changed us both in some permanent ways; we’ll always be “care givers” even when not running around cleaning up messes and dealing with emergencies.

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Caravaggio’s rendering of Jesus’ appearance to Thomas – “And this one’s from washing bedding at 2 a.m.”

The Bible says that when Jesus rose from death, his great victory was not a complete makeover.  He carried the wounds of his execution.

Eight days later, his disciples were inside again, and Thomas was with them. Although the doors were locked, Jesus came and stood among them and said, “Peace be with you.” Then he said to Thomas, “Put your finger here, and see my hands; and put out your hand, and place it in my side. Do not disbelieve, but believe.” (John 20:26-27 ESV)

Care giving leaves marks on our souls, if not our bodies.  Some marks are wounds.  We tense up at certain sounds.  We continue to sleep with one eye open.

But other marks can make us glorious treasures to others.  Empathy.  Hard earned wisdom.  Humor.

We stay in the care giver club, not only to be cared for but to be good companions to those still giving care hands on.

Male Pattern Autism

I haven’t had hair in so long that I can’t remember if one feels a difference between one comb and another.  Oh, sure, brushes – some are stiff, some are soft.  But combs?

20161108_064758Here are the two combs that reside in our son’s bathroom.

One is big and pink and has been around since Titanic hit the iceberg.  The other is your standard little black pocket comb that just showed up one day.  (Note: if you feed strays, they come back).

Our son insists on the pink one.  If I bring out the black one, he pushes my hand away and points at the pink one.

They both have the familiar wide-spaced teeth at one end and narrow spacing at the other.  Can they possibly create different feels on his head?  That’s important, since sensory issues are massive for people with autism.

Or is it just the familiarity of the item and daily habit?  The pink one is old and established.  The black one is some new thing that obnoxious caregivers or occupational therapists or beings like that might try to inflict on him.

Which is why incumbents get reelected so often.  (Ponder that on election day.  Are we just one big autistic country or what?)

How we go over the edge.

I’m pasting this from a closed caregiver support site, so I’ve edited out stuff that could identify the source.  (Caution: coarse imagery and language)

It is the kind of story that is at once funny and tragic.  You have to laugh, but you have to recognize that this is the steady drip (or poof) of stuff that wears caregivers down and makes us nuts.  It’s always one more &#&#^ thing.

I got home from work, my honey is in bed not feeling well, and I decide I will take a relaxing hot bath. I deserve a long soak. I get a cup of tea, turn on my audiobook, get all settled in, and my dog passes gas. I don’t mean a little fart, I mean green noxious fumes fill my bathroom. The kind of dog fart that leaves a taste in your mouth. I know it’s not personal, but come on, all I wanted was 30 minutes of peace. Now my honey is yelling “did the dog $@#+ in the house?” Loud enough for the neighbors to hear, and I’m aggravated. Now my supposed “best friend” is laying on the couch like he deserves a dog treat. All I wanted was a damn bath.