Rules of Engagement

APRIL IS AUTISM AWARENESS MONTH.

Yeah, this post’s title is a military term.  Rules of engagement tell you when you’re allowed to shoot back.

Sometimes care giving feels like combat, albeit in non-lethal form.

One particular battle is the effort to engage people with autism in collaborative behavior.  I was going to say meaningful behavior but that assumes that people with autism are absorbed in meaningless behavior on their own, which is not true.  Their behavior has great meaning to them, even if we can’t always crack the code and understand it.  And who knows, maybe they perceive our antics as meaningless.

OK, back to collaborative.

Our 25 year old son with autism, Joey, lives in a warm and supportive group home here in town.  Our custom is to pick him up on Sunday afternoons for dinner and an overnight with us.

We try to engage him in play, household activities or just chit chat.  None of these have ever been among his favorite things.  And as we shared a few weeks ago, his priority right now is to negotiate and nag about an unavailable form of entertainment he used to enjoy on his own.

So there’s some creative combat as we try to get him to say or do anything besides chanting “VCR will be here soon.”

Music usually engages him, but he’s figured out that playing tunes on our computers or phones is our effort to stifle the VCR negotiation.  So he either covers his ears and stomps away, whines “No MUSIC” or, wonder of wonders, forms a sentence to say, “I want quiet, please.”  Which is collaborative communication, except it leaves us all staring at one another non-collaboratively.

So I ran and got some picture books from our years of accumulated kids’ books.  We got a few smiles out of him with our funny character voices,  but he would not sit on the couch with us to look at them, let alone read with us.

So Melissa continued to try an engage him in talk or music while I huffed away to empty the dishwasher (does he think I’m engaged in meaningful behavior when I do that?  Do I?)

Then a little light bulb fizzed on over my head.  I said, “Hey Joe, come in here with dad.”

He glowered at me.

“Come on and help dad,” I chirped.  “This will be FUN!”

He uncurled from the couch and stood looking at me.  I indicated the silverware drawer.

20190331_213344“Help dad put these away.”

I handed him a butter knife.  Lo and behold, he put it in the slot with the other knives.

“Good job with the knives,” I oversold the moment.  Then I gave him a salad fork.

He put it in with the other smaller forks.  That was impressive, as he could have just mixed it up with the larger dinner forks.

I commenced praising him and called out my delight to Melissa.  I was going to move on to spoons, but he made an annoyed face, sounded off with his go-to word, “NOOOO,” and returned to the couch.

We counted the night a success.  Caring for people with autism requires rejoicing in small victories, connections that might seem trivial in what we perceive as normal life.

We’re still refusing to chase after another VCR.  But we are adopting a puppy.  And we’re provisionally excited, because Joey made eye contact and whispered “Yes” when we told him about it and Melissa showed him pictures like this one:

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This little guy is named Henry.  We hope he will help us with some fun engagement with Joey.  That is, once Henry’s done eating Melissa’s glasses.

So, what forms of engagement reach the one(s) in your care?  Always open to new tactics.  What works with one person with autism doesn’t necessarily reach the next one.

Very often, the most loving care is to keep showing up, trying again or trying something new.

And sometimes just showing up and letting them be.

Are you a family caregiver or know someone who is?  Consider getting or gifting our little book for this Autism Awareness Month.

 

Maybe Next Year

Growing up in L.A., I was a fan of the Los Angeles Angels when they were a brand-new American League expansion team. When I was a kid, they played in the stadium named for the “real” team: the Dodgers.

But in my childhood, they were a “maybe next year” team. Maybe next year they would win more games than they lost. Maybe next year they would climb up from the bottom of the standings.

We have a “maybe next year” tree by the street in front of our house. We needed a tree out there to block some of the summer sun that routinely fried our lawn. We also craved fall color, so when a landscaper showed us pictures of a maple called a “Fall Fiesta,” we said, “Wow, look at all those fiery leaves! Put one in right now!” So he did. And all the budding leaves fell off, and the tree went dormant. We looked at our bare little tree all winter, praying that dormant was something different from dead. The tree budded in the spring. Of course, it hardly cast any shade, little thing that it was.

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The tree done good!

The next year was better. There was noticeable fresh growth on top. It grew taller. Its leaves seemed fuller. It didn’t shield the lawn from the sun, but it cast a respectable shadow where the dog liked to pee on hot days. There were some deep red leaves in the mix for autumn. Each year adds.

Like waiting on a plant to bloom, taking care of an autistic person requires patient hope. Your heart, and maybe your mind, will break if you are into precise timelines. “Next September our kids will achieve ‘X’” must be held loosely. “X” might happen in October, or November, or the following spring, or September two years out, or not for a very long time.

Like hopelessly loyal sports fans or amateur gardeners, caregivers have to keep telling themselves, “Maybe next year.” And in the next year, or tomorrow, or a few seconds from now, a once-abandoned hope arrives as a surprise.

Gardeners like ourselves must learn and relearn “deferred gratification.” We might want to stick a stalk in the ground and see a tree the next day, and we want to think that one or two sit-downs with an exercise book will have our kid reading literature in time for kindergarten.

But when it comes to caring for someone with special needs, it is important to hold a goal patiently. If it is a good goal, it is worth holding onto in heart, mind, and habits over many seasons.

Like travelers using the four cardinal directions on a map, people who follow Jesus find spiritual orientation from three cardinal virtues: “faith, hope and love” (1 Corinthians 13:13 NIV). Hope keeps us looking to the horizon, to what’s next. We hope for what we do not see or have, but believe what can be out there. Hope allows us to act with purpose, believing that our efforts are worthwhile and taking us toward a good destination. It means long seasons of waiting, of doing the right stuff over and over even when a desired result isn’t coming into view.

When we come to terms with hope, we find that it isn’t really about a particular event, thing, or outcome, but it’s about coming face-to-face with the one who is calling us forward.

Edited and shared by the publisher, from my book.

Strong mind, weak back

When advocating for our son’s placement in a group home, one of our arguments was our increasing age and the upcoming physical challenges of ’round the clock care for an adult with autism.

Now that he’s placed, our incredible wisdom is validated.

This week, Tim was diagnosed with something called “frozen shoulder.”  As the Mayo Clinic reveals,

Certain factors may increase your risk of developing frozen shoulder… People 40 and older… (Note: Tim’s about half past 40).

Even with Joey in a good group home, our age impinges on what we can do for him.  We just bought the new bed he needs, and Melissa’s call to the mattress place went something like,

My husband can come pick it up, but he’s got a shoulder thing.  Can someone there help him get the mattress on top of the van?  And can you tie it down for him?

Which is to say,

Death and that other stuff

So yesterday I did my taxes.  Well, I compiled all the stuff so a tax pro could do tax pro voodoo with it.

Screenshot 2018-02-09 03.54.10

Screen grab from my personal Facebook page.

Tax time gives me mixed feelings.

Yes, it’s a pain with our over-complicated system, built for those with the means to manipulate and a money vacuum stuck in the pockets of working people.  So I grumble.

But because all kinds of people all over the place pay taxes, there are various programs that make life gentler for our son with autism, and that ease our burdens as caregivers.  So I give thanks.

But more than all of this is the fact that I had to download and print a number of documents.  THIS is where I felt the impact of decades as a caregiver.

See, our son likes to grab pieces of paper, crumble them up and wave them in moments of self-stimulation.  As a result we used to keep all of our bills and documents secure, and we never, ever, ever left paper in the exposed printer feed tray.

So yesterday, after printing the 1095 and the mortgage interest thingy and such, I took all the paper out of the feed tray and hid it in a file cabinet.  Even though our son doesn’t live here anymore.  

Care giving.  A gift that keeps giving.  With all the certainty of death and… and… what was I talking about?

It’s on

Here’s the latest on our 23 year old son with autism’s transition to a group residence:

Yes, we have a pre-move team meeting next week and a move in date of November 1, per this message from the Case Manager,

Hello Team,

Joey and I would like to invite you to his ISP Pre-move meeting.

Date: Friday, September 22nd, 2017
Time: 3:30pm
Location: XXXXX Conference Room 3

The purpose of this meeting is to discuss supports Joey will need during his transition to the XXXXX house.

Melissa (mom) is working with Joey on feeling more comfortable with his new computer, which will move with him. He hates change so this was a heck of a time for his old desktop to go kaput.

His most recent antic was to unplug the new laptop, take it off the desk and plop it by its purchase box to say, “Send it back.”

Melissa coached him on being more at home with it, and they had a good discussion one recent morning before his bus arrived and a good hands on lesson last night.

I’m off today and we are planning to go to a sports bar that Joey likes because it is roomy and has great burgers.

Which gave Melissa leverage when he didn’t want his computer lesson. All she had to say was “Working for cheeseburgers.” He complied.

It’s on. The computer is on. The move is on.

Meanwhile the dog did some neurotic paw gnawing last night, opened a wound, and thus cancelled her scheduled bath and grooming.

That’s care giving. Deal with one issue, and the next one comes up from somewhere, somehow.

A dish best served with a smiley-face flower

The news is that agency staffing issues will delay our son with autism’s move to a group home (which seemed imminent about ten minutes ago) until mid-October.

Meanwhile, he’s descended upon us with increased nagging and bargaining for his Christmas list (yes, he starts early).  Mom and Dad are both on the ragged edge right now after bouts of illness and long work hours, so the din of his demands is a mental and emotional pummeling.

Yesterday we began to dish up a big ol’ plate of vengeance.  He came home from his day program with this very sweet guide to respectful communications:

20170824_173707THINK Before You Speak

T – is it True?

H – is it Helpful?

I – is it Important?

N – is it Necessary?

K – is it Kind?

BTW we stipulate that this is sound advice, not just for empathy-impaired people with autism but also for married couples, workplace relationships, social media, etc. etc. etc.  The world could be a much better place – Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. (Ephesians 4:29, The New Testament)

And yes, that’s a rack of his daily meds at the bottom of the picture.  I’m so tired that I gave up on the photo cropping function and I don’t much care.

So we used this against him with great delight,

Joey:  Be a good boy there will be presents?

Hateful parents:  Joey, is it NECESSARY to talk about presents today?

Joey:  When it’s winter there will be presents.

Atrocious parents:  Joey, is it HELPFUL to talk about this before the snow comes?

Joey:  When the snow comes there will be presents.

Should-be-arrested-and-executed-parents:  Joey, is it KIND to keep talking about presents?

Hey, you find respite where you can get it.  That’s care giving.  And it makes even a smiley faced flower stink some days.