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.

 

Antiquetism

Our son’s 25th birthday is at hand.

Joey at DavesHe’s picked out a fave place for dinner.  They serve up his favorite burger & fries and a mound of vanilla ice cream sporting sparklers for birthday dessert.

But on the gift front, we are stalled.  We were messaging with his older brother last night, and at a loss for ideas.

His gift choice for most of his life has been movies – – – in VCR format.  (The link takes you to a piece from the Wall Street Journal, which, if you can get past the subscription sales pop-ups, speaks fondly of the technology as antique and having reached its demise.)

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Actual morgue photo.

You can still find VCRs for sale, but they’re increasingly expensive and impossible to maintain or service.  Our son is a button pusher extraordinaire, and the contraptions give up the ghost to that or to the funk of his very old video collection.

We are feeling for him.  Melissa points out that this has been one of the principal pleasures of his life, and now it’s gone.  He’s chafing at our suggestions of watching his movies on his computer, but that seems the best way to go.  He’ll trash or lose discs, thumb drives and other such media.

Anybody else made this transition?  Wide open to suggestions, both on replacement media and techniques for helping him embrace it.

Annuals

Our publisher’s site has another excerpt from our book up for ya.  It posted with some typos (since corrected) which was kinda funny because it is an excerpt about things getting out of our control…

Flowers Olde RectoryHere in South Dakota, the weather extremes must be navigated. If you plant before spring locks in, a frost can occur, and the annuals are history. In the midst of a broiling summer, a thunderstorm can sweep in and dump inches of water. You have mud puddles where your planting once shined. The blazing sun in the bright blue sky, like the pattern for our state flag, fries fragile flowers. The result is that we’re on hiatus from planting flowers here.

Joey’s autism does yeoman work of blowing up my fantasy of predictable order. Just when something seems to work, it breaks down. For example, Joey loved the water. One of my first memories of him appearing “normal” in public was at a beach where he ran out to the water and let the waves chase him back, all the while laughing just like the other little kids. But it wasn’t just the ocean. Any water made caring for Joey easier. Then he stopped liking water.

Give it a read.  Hope it is helpful if you’re in the midst of a “things are getting away from me” mood.  They are, of course, getting away from you.  But you’re OK.  No, not FEELING OK.  You’re OK because you are, against all the evidence, the very best resource that the universe sends to those in your care.

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.

Holidays and Expectations

Ah, the holidays.  Happy memories of childhood magic float into our thinking, only to crash upon rocks of present reality.

This can be acute for caregivers.  We want to enjoy the season; we want to make magic for those in our care.

48362608_10217973652521354_2826689720354865152_oWe’ve been fortunate.  Our son with autism loves Christmas.  I’ll just share this picture-worth-a-thousand-words…

But he’s also done numbers on our memories and expectations (and property and bodies) over the years.  As I wrote in Raising a Child With Autism,

Joey has taught us a lot about saying goodbye to things we valued and enjoyed. We had a set of stoneware mugs from the bed-and-breakfast where we honeymooned. He threw one and shattered it. We kept a little mesh bag of Jordan almonds from a place setting at our wedding reception. He ate them.

The smiley kid by the Christmas tree?  You mean that happy child?

As I went on to write in the same chapter of the book,

Taking care of one off-the-wall, scary child of God means that a bunch of our nice stuff will get trashed. We can go down with our things and drown in a lake of resentment. Or we can find the love in our hearts that makes the well-being of that one person worth all the losses. More than this, if we open our eyes of faith, we can see God’s love for us.

Prayers that your holiday – holy day – catches even a bit of the holy.  A little goes a long way.  Little town of Bethlehem, a baby in a manger, from what seems small comes divine blessing.

Little you in your little part of the universe – you are a blessing to those in your care.

Because

I’ve been whining about the sorting of post-care-giving issues, haven’t I?

OK, here comes a celebration of the freedom that seeps back into life.

Hatch 2018Today I’m roasting Hatch Chiles.  Most people are all about pumpkin products as summer turns to autumn.  But these beauties from New Mexico make the season for me.  Wish I could share the aroma with you.

It is not a fast process, but I can take my time on a blessedly slow Saturday morning.  Did I mention the aroma?

I’m not having to watch over my shoulder, or listen for booms and bangs, or make sure someone isn’t too close to the oven.

Because today I don’t have to.

Last night we had friends over for some prayer and Bible study, and we sat out on our recently cleaned deck because it was a lovely evening and because nobody had to stay in the house on safety patrol, or to administer meds, or clean up a bathroom, or or or or anything else.

Because we didn’t have to.

If you’re in the midst of care giving (as we were for more than two decades), savor your respite time.  It is a break from what you’re in all the time, but it is also a taste of something that is coming.

Because what you’re doing today will not be forever.

The Book of Common Prayer captures what I’m trying to say, albeit in the cosmic sense,

Almighty God, who after the creation of the world didst rest
from all thy works and sanctify a day of rest for all thy
creatures: Grant that we, putting away all earthly anxieties,
may be duly prepared for the service of thy sanctuary, and
that our rest here upon earth may be a preparation for the
eternal rest promised to thy people in heaven; through Jesus
Christ our Lord. Amen.

 

Changes

We went to our son’s annual Individual Service Plan (ISP) meeting last week, the first since he moved into a group home.  What the staff said made our hearts glow,

It’s been one of the best transitions we’ve ever seen.  It was hard to think up things for the agenda.

It’s really been that good.  He’s taken to the new arrangement and is healthy and happy.

Here on the empty nest home front, we went for some changes of our own.  When we started this blog we put up our masthead picture of the backyard dog run.  It was built by the previous owners.  Our dog never took to it, whined and barked enough to bug the neighbors and became an inside pet.

Anyway, the old picture captured the increasingly weedy and decrepit dog run with a neighbor’s well groomed yard just over the fence.  It evoked that care giving feeling that says, We’re all messed up while the world just beyond is going fine.

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The old dog run got more and more weedy, run down, rabbit and who-knows-what-else infested over the years.  We decided it was time for it to go.

 

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In came a dumpster and out came a friend with sledgehammers and a power saw and assorted other demolitiony goodness.

 

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And, voila, our yard is nice and orderly like the rest of the world.  Guess we’re not caregivers no mo’.

Of course this blog has sounded off before about how we are dealing with all kinds of deferred maintenance on ourselves as individuals and as a couple.

There are good PTSD sites out there and this won’t try to do what is already being done better.  It is enough to say that the fallout from care giving sticks around long after the work is done.

But doesn’t the yard look nice?

Recovery reversal

Our son with autism has Seizure Disorder in his overall diagnostic and safety data.  The seizures came on with puberty and were terrifying intrusions in his teen years.

Now he’s in his 20s and the seizures have faded but not gone away.  They show up now and again with much less intensity.  Well, for him.  Not for us.

It used to be that a seizure knocked him out for a good 24 hours.  He would sleep and snore or at least breathe heavily until a groggy reentry into our world.  ‘Twas up to us to stay alert and watch over him.

Last night he was here for dinner and a small seizure broke through.  He knew it was coming; he knelt on a big beanbag chair in our front room and hugged the dog, protecting himself from the risk of a fall.  (Confused the heck out of the dog, though, as our son seldom interacts with the pets).

We thought, Wow, that’s sweet!  He’s hugging the dog… Then we noticed his forearms were rigid and vibrating.

It ended quickly.  We rolled him on his side on the beanbag chair but he was up and talking in a few minutes.  He went on to have full dinner and a pleasant evening amusing himself and deflecting our efforts to engage him in anything that seems like work (that’s normal – a sign that he’s fine).

Today he was all smiles, had a big breakfast and is off to his day program.

We, in contrast, continue to recover.  Neither of us slept well, as we hovered on the edge of sleep listening for sounds of another seizure.  I took a sick day from work to recover.

It is good that he’s moved on to his group home, because we are so absolutely aging out as caregivers.

Today I feel for the folks who care for (and age with) their spouses, who don’t have group homes or agencies to take over the work.  As one said,

They looked at my diet. They looked at my life style, my BMI and they are like “There is no reason for this!” I am almost diabetic and there is nothing to indicate WHY I should be – STRESS!!!!! That is one of the worst things on a body – my body can’t take much more STRESS! Despite the yoga, the chammomile, the meditation, the walking and support -being a caregiver is MONOTOMY PLUS and horribly stressful. There is no cure.

Pardon my language, but…

Upside Down

Well, not literally.  I’m not flipping the car or other antics described in the last post.

The publisher of my book about the care giving experience occasionally posts excerpts on the web.  One came up today, and it flips into that “upside down” feeling,

I guess it can’t be any other way. There is no magic cure for autism. You have to take in lots of advice and experiment with different approaches because what lifts the life of one autistic kid could be fruitless or even counterproductive with another.

upside down me

Care giving: actual footage.

The universal manual of “normal” parenting fails to help. Normal parenting is to yell if you spot an emergency in progress. But if we’d raised our voices and warned Joey, “Hey, put that down. You’ll put your eye out,” we’d be living with a Cyclops by now. You learn to use soft, reassuring tones to say, “Honey, you’re standing in front of an oncoming bus there. How about standing with Mommy instead?” You find yourself looking at the world upside down.

Care giving is a practice in which common sense and conventional wisdom take frequent beatings.  Which is why I try to share some spiritual perspectives here from time to time.  Misery loves company as it stands on its head, and it also cries out for help that can bring things into perspective.

We’re being followed

Here’s a bit from Raising a Child With Autism, courtesy of the publisher,

I was more on top of weed-pulling in our first garden. I had the energy of youth, the pride of a new homeowner, and it seemed urgent. Likewise, in the early years of Joey’s life, we were young enough to run ourselves ragged trying to do everything: work on every skill and learning drill, coach him through every small task, try to keep him engaged, clean up after him, visit and consult every expert, and go to every seminar and meeting. As each year passed, we accepted more freedom just to say “no.” We accepted that there would be all kinds of needs and issues all the time.

We also learned more about depending upon others. I pay friends’ kids to pull my weeds these days. In raising a person with autism, there are free services and activities out in the community, and some for which you have to pay. Either way, there are good and competent folks who can enrich the life of a person who lives with autism.  

You can spend all of your time pulling weeds. You’ll have a nicer garden, a sore back, and a growing sense of futility. The job is never done.

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