A tale of two something somethings

Here’s our front walkway.  Yes, the same one where I go to photograph weeds to illustrate the futile feelings and fleeting successes of care giving.

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Yes, it’s neat.  That’s because we came into some money and paid to have it cleaned up.  Care giving is about recognizing your limits and accepting (or buying, or begging for) help.  If I’d started the job, it would still be half done, probably resulting in a picture for another post about how care giving never, ever reaches a point of completion and satisfaction.

Meanwhile, two of the new plants summarize the modern world of therapies for people with autism.

The plants are just a few feet apart, getting the same sunlight, same water, same same.

Yet one is coming along…

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…the other, not so much…

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Those of us caring for people with autism learn that the ultimate silver bullet therapy that turned one kid “normal” simply bounces off of another kid.  Helping a person with autism engage and enjoy life requires intense attention to that person’s unique aptitudes and limitations.

And guessing.  Lots of guessing.

And grace/luck/fate.

And even when you hire a pro to do the planting, one bush grows and the other withers.

 

Mental Exhaustion, or…?

I’m coming off one of those sleep deprived nights that go with having a person with special needs in the house.  I’m sure I’ve shared a zillion such incidents so the details are irrelevant.

Care giving involves emergencies in the middle of the night or when one is already depleted by all of life’s other stuff.  And even without the emergencies, there’s the steady drip of energy into routines of care (aka chores) that turn life into a blur.

I find myself having to check my PC or phone to remember which day of the week I’m on.  Is that advancing age or the fog of extended care giving?

Inventories for depression include a question like “Have you been unable to do things you used to enjoy?”  Hell yes, but is that depression or exhaustion?  Who wants to take a 20 mile bike ride along the river on 3 hours of fitful sleep?

The upside is, you don’t need the expense and (depending upon where you live) legal issues of sitting around stoned. Care giving provides its own kind of burnt bliss. Pink Floyd provides some good mood music,

Comfortably Numb, am I? Or am I actually dealing with

OK, that’s all for now. Got to keep the loonies on the path.

The Blooming Idiots Anthem

Obviously, we use a yard scene as our masthead on this blog, and our upcoming book is called Blooming Idiots.  We draw examples from our amateur gardening efforts to express how care giving itself is a learn as you go, trial and error process. It goes better if we can laugh at ourselves and if we reach out for help, even (maybe especially) divine help.

In the course of daily prayers a traditional Christian hymn came up.  The last verse might have to be recognized as our Blooming Idiots anthem,

There’s not a plant or flower below, but makes Thy glories known,
And clouds arise, and tempests blow, by order from Thy throne;
While all that borrows life from Thee is ever in Thy care;
And everywhere that we can be, Thou, God art present there.

By the way, here’s a guy playing the hymn tune on an organ.  You can at least feel a bit churchy if you didn’t make it to church,

Sleepless in San Diego

20160705_165548I ran into this VHS case while picking up in our son’s room.  I’m not sure if he still has the video but this conjured the Ghost of 4th of July Past.

We lived in Orange County, CA, which is between L.A. and San Diego.  Joey was in his “I don’t sleep” years.  We were exhausted, taking turns being up to take care of him at all hours of the night.

Along came the 4th of July.  No holiday for caregivers, it meant being up whenever Joey decided we should be.

He was thumping around the house around 4 a.m.  I was up keeping a weary eye on him and disgusted by the combination of sleep deprivation and the futility of efforts to engage Joey in some meaningful interaction.

So I plopped the both of us in my car and drove.  Yes, parents will recognize the universal tactic of lulling a crabby kid to sleep via a wandering car ride.  Works with toddlers.

It wasn’t working on Joey.  I drove onto I-5 heading south along the ocean.  I was in such a mental fog and he was so not going to sleep that next thing I knew I’d driven 80 miles to San Diego.

On a whim, I pulled into the Sea World lot to see if they were open for the holiday.  Lo and behold, the ticket kiosks were just then admitting people.

Joey groused and made faces in protest of being marched into a strange place.  His adversarial antics were a constant in those days, and he would either refuse to walk with me or scamper entirely away.  Fortunately Sea World was not yet crowded and I could keep him in sight and retrieve him.

The impromptu journey took a positive turn when we went into the Penguin Encounter.  After convincing Joey that he could not join the South American penguins in their outdoor display pool, I coaxed him into the dark, cool exhibit.  On the other side of a panoramic window, penguins, puffins and auks posed like inflated statues.  Every so often one or two would waddle to the water and, visible through the glass, shoot like torpedoes through the water.

Joey settled down and took this in.  We stayed there for a long time.

My next victory was at the first dolphin show of the morning.  I noticed a shiny black pilot whale in the holding tank, waiting to perform.  Exploiting Joey’s love for Disney movies, I leaned over and said, “Look, Joey, it’s Monstro!”  (that’s the whale in Pinocchio).  He started smiling and then burst out laughing.  I had us sitting down close, in the “splash zone,” and he laughed even harder when sea mammals sent waves of cold water over us.

The biggest hit of the day was a manatee tank.  It was indoors, like the Penguin Encounter.  The large, gentle creature was floating vertically underwater, and a human diver approached to feed it heads of Romaine lettuce.  Joey was mesmerized and didn’t want to leave.

That led to the purchase of the video in the picture, a sweet reminder of a day with a wretched beginning that wound up as a great father-son experience.  We played on some pirate themed climbing apparatus, hand fed dolphins while fending off seagulls intent on sardine theft, and of course found a place serving personal pizzas (Joey’s staple).

By the way if you meet Joey, asking him what the manatees do.  He’ll tell you “Manatees eat the vegetables” (pronounced faschables).

 

(Stay) Home of the Free

This is not one of the supply of good articles about the impact of fireworks on people with autism and other special needs.  (Hint to save you a lot of reading: People agitated by sensory issues don’t like boom boom boom).

No, this is another sad tale of freedoms taken for granted and lost, such that not even the most manipulative candidate can come up with an impossible election year promise to bring them back.

We don’t get to attend fireworks shows because by the time it is dark our son’s evening medications are making him drowsy and he doesn’t like going out.

Mind you, when we want to turn in early he’s quite capable of staying up all night making noise.

But going out for 4th of July fireworks is out of the question.  The problem worsened when we moved up here over the northern horizon.  In the summer it’s not dark enough for fireworks until about 9 p.m.

So sad, because when I worked at a local hospital I realized that the top of one of its parking towers provided a panoramic view of several area fireworks shows.  So we tried packing snacks and driving up there, figuring that Joey would be fine reclining in our own familiar minivan.

But he protested, almost melted down and made things miserable.

Some caregivers work up to their elbows in bodily wastes and gore.  That’s been a sporadic demand for us, but our greater challenge has been the steady elimination of freedoms – we can’t be spontaneous; social life is whittled away; we can’t park on a roof and watch fireworks.

Am I whining again?  Well…