Why did I write that book?

The truth is going to sound wacky, pompous and neurotic.

But I’ll lead with the truth and then list some more palatable stuff.

The truth is that I was in the park with our son, Joey, who lives with autism.  His slightly older, neurotypical (aka “normal” or at least NOT living with autism) brother had just driven away to start college.  I was praying, which was easy as it was a gorgeous day.  Obviously, my heart was full – memories of the kids over the years, hopes for what would come – so I was pouring that kind of stuff out to God.

Not audibly, mind you.  The other parents were not telling their kids, “Honey, come over here, away from that strange man.”

And just as surely as I was speaking to God, God spoke back, not in a audible voice (I’m only neurotic, not psychotic yet), but in a thought that flooded my mind and overflowed into my heart: You can write a book that helps other family caregivers.

I knew right away that I would be writing in the midst of care giving, not from past experience.  The book would never be The Five Essential Habits of Excellent Caregivers or something like that.  Rather,

  • I wrote it so that people confined by the demands of care giving would find companionship, at least in the stories I tell but hopefully beyond them in the divine, “patient gardener” who has helped me beyond what I could ask or imagine;
  • I wrote it so that stressed out people could laugh.  You have to find the humor, dark though it might be, to keep going as a caregiver.
  • I wrote it to process my own inner stuff.  As I said, I wrote it while care giving, not after.  And so it was a combination of meditation and therapy for me as much as for any potential reader.
  • I wrote it because I enjoy writing.  It is a gift I have to share and, frankly, I communicate better through writing than any other means.  Well, except yelling or crying and stuff like that.

Ortt book and icon

 

A long time friend shared this lovely pic of the book on a desk where he studies and prays.  I pray and hope that this little book serves God by helping family caregivers in the depths of their hearts.

 

Empty cart, not yet empty nest

shopping-cartI couldn’t resist having fun with the sign on this shopping cart.  I Instagramed (is that the verb?) it, with a caption about how I wasn’t getting any children anyway since I was fasting for Ash Wednesday.

Humor is an important ally to the caregiver.  It is a tension cutter.  Much of our humor is dark, but then so are the situations that generate it.

In recent months it’s been harder for Melissa and me to laugh at some of the quirks of Joey’s autism.  His video watching becomes intrusive noise; I don’t think he’s turned up the volume but our annoyed ears seem to think he has.

The chores of his daily routines – chores we do for him, let me be clear, not chores he does – are not a terrible effort yet they are numbing.  Not demanding physically, but draining psychically.

His non-cooperative behaviors get under our skin more.

We have more wistful conversations about being empty nest, about having the house and the time to ourselves for the first time in forever.  And so we wait for Joey’s group home placement, still loving him and wanting all to be well in his life yet feeling the limits of our own aging and of the two decades dominated by autism.

And that’s followed by a mist of fear that we’ll be staring at each other across a great emptiness wondering, OK, now what do we do?

Speaking of aging, I guess that entitles me to repeat stuff I’ve probably said before but can’t remember if I did.  So, let me say (again) that one way to describe raising a child with autism is to ask parents of typical kids to remember the sleepless nights and all the stuff that went with a new baby – the stuff that in hindsight becomes a source of humorous memories.  Now imagine that much of that stuff never developed into self sufficient adulthood and you kept doing it for five years, then ten, then twenty.  Not so funny anymore.

Remember that you are dust, and to dust you shall return, is what we say on Ash Wednesday.  Indeed, care giving exposes every pathetic evidence of sin and fatal separation from God – every bit of selfishness, the limits of love, the capacity for self pity and resentment, the instinct to blame… all of the ungodly feelings, thoughts and emotions in service of the world, the flesh and the devil.

If we are fortunate, it becomes the great weakness that throws us upon the grace of a loving God, who gives us power to live in ways we never imagined,

Three times I appealed to the Lord about this, that it would leave me, but he said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’ So, I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me. Therefore I am content with weaknesses, insults, hardships, persecutions, and calamities for the sake of Christ; for whenever I am weak, then I am strong. (2 Corinthians 12:8-10)

The Aftermath of Disasters

Melissa is feeling beat up today.

I was invited out last night and she stayed in with Joey.  Disaster struck twice.

First, a dinosaur attacked.

Our 22-year old son with autism took a fancy to this on his internet surfing, and played it over and over at high volume.

This is the guy who can’t help with chores or muster the fine motor skill to sign a thank you note without hand over hand help. But he can find, play and replay videos on the internet. And adjust the volume. Mainly up.

After the dinosaur attack, there was a tragedy at sea,

Yes, it was a concert for the ages as Barney was just an opening act for Celine. Vegas can’t top this. Jurassic World and Titanic as a double feature? And thanks to Joey’s computer skills Melissa got a few hours of both in Dolby high def.

Needless to say, Melissa was worn out by the time I got home. And today she’s had a nasty headache. I had the day off and we had plans to go out but the Monday night mayhem scrubbed all that.

Caregivers are happy when those in our care find simple things to enjoy. But as we say in our book,

It is a short step from “Thank God I’ve found something he likes,” to “Please, God, make him stop bugging me about that.”

Out with… with… I forget

So here comes the obligatory New Year’s post.  Although I think I neglected the compulsory Christmas post so I’ll cram them together.

Joey begins perseverating about Christmas presents – aka movies on VHS – in the summer.  We get mad and try to make him change the subject; Melissa makes him dictate a written list so at least some constructive interaction takes place; our eyes roll back in our heads…

presentsThen Christmas day comes, we wake him up for breakfast and presents, show him his loot ‘neath the tree, and he says…

“NO!!!!!”

and goes back to his room.

We eventually prevail upon him to open the gifts, which he does with grumpy histrionics before again retreating to his room without them.

Eventually, over several days, he begins watching his long desired movies and seems happy.

Well, this year we resolved (see that New Year’s hook?) to try a new approach, which was no approach at all.  We simply let him ignore the presents to see where his thought process would take him.  We offered them to him and then left them under the tree and waited.

Our older son and his wife flew in for the holiday, and we exchanged gifts with them a few nights after Christmas.  Joey seemed to get into the second gathering and opened his presents then.

Hypotheses include a) he wanted his brother there, although he did the whole “NO” schtick throughout the years his brother lived at home; b) he doesn’t want Christmas to come to a crashing end but wants to sustain the gift getting pleasure; c) oh, hell, I have no idea.

Here it is New Year’s Eve-day and I’m sitting here yelling at him to turn down the volume on the movies, which he’s enjoying.

I’m not big into resolutions.  But here’s a favorite scene that reminds me to be open to change, to quit pounding my head against autism or any other wall…

May 2017 bring you blessings, especially freedom from old ruts. May you have divine favor upon all that you offer.

Therefore, if anyone is in Christ, he is a new creation. The old has passed away; behold, the new has come. (2 Corinthians 5:17 ESV)

The Usual Suspects

Care giving includes stuff getting destroyed.  As we say 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 can’t keep a DVD player… we gave up on taking vacations…

The latest loss is a cheap pair of reading glasses I kept on the nightstand.  I need readers and keep them in convenient places.  Last night I left my laptop on the bed to go have dinner and the readers were sitting on the keyboard.  When I returned I found the laptop closed and this was inside:

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Mashed readers.

This now becomes an investigation worthy of SVU (or is it SUV?)  or CSI or one of those other crime shows.

Joey smileyI mean, it could be this guy.  He’s known to walk into rooms and turn lights or contraptions on or off because… because autism.

 

 

 

lily-christmas-2015

 

 

Or it could be this malefactor, who likes to jump on the bed but is now old and feeble and has to climb up via a bedside chair, which would put the laptop right in her destructive path.

 

 

sophia-cat-toy

Or this other bed (and everywhere else) sleeper who is so fat that she could have sprawled out and rolled over the laptop.

 

 

Guess it doesn’t matter.  They’re all objects of our affection.  Even if they’re a bit out of focus for me this morning.

Open Door Policy

No, not a political rant or a lesson on office management.

Joey got up for a drinky in the wee hours and left the refrigerator door open.

One of the overlooked costs of care giving is broken stuff.  Appliances.  Vertical blinds.  You name it.

Or that smashed, irreplaceable souvenir mug from the bed and breakfast where you honeymooned.  Priceless, as the MasterCard ad gushes.

But I suppose there were upsides to the ‘fridge left open (I don’t think he blew the compressor, btw, it seems to be working OK now.)

  • The butter for his morning toast was pre-softened
  • The cool air mixed the the house’s central heat to make the kitchen a perfectly balanced garden spot
  • Our electrical provider is enriched just in time for more holiday shopping and will probably give Bob Cratchit half of Christmas off.

I suppose I should add one of my fine photographs to this post.  But looking into someone else’s ‘fridge seems kind of intimate, don’t you think?  I mean, why see the milk if you don’t own the cow or something.

Anyway, back to the morning routines.  Need to plug in the Christmas tree lights, get the crockpot going, etc.  At this rate, Cratchit might get the whole holiday off.

 

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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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.

 

Maybe Next Year

Hi, friends.  For your weekend reading pleasure, here’s a chapter from our book, Raising a Child With Autism.  OK, the book doesn’t have the cool pictures.  Ain’t blogging grand?  Have a great weekend, and hope this chapter is good news to you.

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XII. 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. This was before they built their own stadium down in Anaheim. When I was a kid, they played in the stadium named for the “real” team: the Dodgers. The Angels were so hapless that some of their advertising highlighted their visiting opponents: “Come out to see Mickey Mantle and the New York Yankees!”

Of course, they went on to win the World Series decades later. 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. The lawn still turned brown when summer came.

And the fall colors turned out to be less than a fiesta—some yellow, mostly brown and then all gone.

Maybe next year?

The next year was better. The tree budded in the spring and 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.

Maybe something more next year?

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Yes, the actual tree in the story as it looks today.

Each year adds. It grows taller, the trunk is stouter, and that tree actually shades the main part of the lawn except for a few days when the sun is impossibly high in the sky. And it totally lights up in an array of warm colors to tell us fall is here. Fiesta!

Digging Around

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 kid 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.

We agonized for years about our son’s inability to tell us when he was sick. He couldn’t say, “I have a headache.” And his dislike for sustained effort meant he wouldn’t cooperate with our “process of elimination” questions. He would say “Yes” to anything just to get rid of us.

“Does your head hurt?”

“Yes.”

“Does your stomach hurt?”

“Yes.”

“Do cats fly on tiny, little wings?”

“Yes.”

Trying to teach him to point at what hurt wasn’t any better. He would wave his hand up and down his body, like Vanna White displaying the board on Wheel of Fortune.

But he had a recent breakthrough. He seemed a bit off, so Melissa asked him, “How do you feel?” Usually, he’ll just say “Fine” or “Happy” even if his face and tone say anything other than those qualities.

But this time, he responded to his mom with, “Do you have a stomachache?” Yes, it was a question when we wanted a statement—but it was his way of sharing precise information with us.

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.

Fertilizer

Blooming idiots 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 (helpful and realistic to the person in our care, not a fantasy to please ourselves) it is worth holding onto in heart, mind and habits over many seasons.

Jesus’ follower Paul put it this way, “For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees?” (Romans 8:24)

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.” (I Corinthians 13:13)

Hope keeps us looking to the horizon, to what’s next. We hope for what we do not see or have, but believe 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 longed-for 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 about coming face to face with the one who is calling us forward.  It is about meeting up with Jesus and continuing the journey forward with him.  Paul seems to have been a blooming idiot of sorts, since he discovered this through much trial and error.

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” (Romans 8:28)20161021_173509