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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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

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).

 

Getting louder

Our son’s been louder the last few nights.  I think the longer daylight of Northern Plains summer messes with him.  He sits up trying to watch movies but his agitation comes out in manically thumping his chest with an open hand.  We say soothing things, he stops for a few seconds, then fills the house with echoing thuds again.

We’re getting closer to our own echo.  The kinds of things we blog about here are coming out as a book in August,

When autism became part of our family, our amateur status as caregivers felt like our trial and error efforts at gardening.  Outcomes were seldom what we hoped.  But with love, spiritual insight and some humor drawn from our yard work we found inspiration and encouragement to raise our special needs son. We hope that Blooming Idiots shares this in ways helpful to other caregivers. The title comes from this thought: “Caregivers are Blooming Idiots who tend and nurture while being sliced and diced by thorns. Beauty grows no other way.”

Author Carol Grace Stratton recently interviewed Tim about the book and his outlet as a writer.  Hope you’ll go check it out.

Did we say outlet?  Let’s say it louder.  OUTLET.  Caregivers need outlets.  We need ways to refresh ourselves by using gifts and talents that are not absorbed into care giving.  We need to exercise bits of who we are that make us feel more joyfully alive.

Now, we’ve heard all that before.  “You have to do something for you.  You have to take care of yourself to take care of others.” And that makes us loud as we scream, “With what time, energy, space or money?  We don’t have any of it left to enjoy.”

Which means you have to let the voice – the divine voice that can be so faint in the midst of all the havoc – get louder than the other demands to remind you that you have great value.  Your care giving work is not a punishment for real or imagined sins.  You are not a bad person for sometimes resenting it or needed to step away from it or not doing it just right all the time.  You have permission to rest, refresh and take pleasure.

We hope and pray that pleasant time will come your way this day.

The Earth is a Mother –

Yes, I mean that in the most hyphenated way.  But a happy (is that the greeting?) Earth Day just the same.

It is a lovely spring day where we live.  High 60s, sunny and no wind.  It is pure pleasure to step outside, feel the sun, walk barefoot in shaggy green grass and breathe in fresh air.

At the same time, another denizen of nature, a virus, is playing in my respiratory system.  It’s making the simplest things miserable.

I suspect that our son’s autism is another gift from Mother Earth.  We took part in a major University of California study that found no single causal factor for autism.  It isn’t a result of this or that human disharmony with the planet – it’s just something that occurs as part of what this world is and does.  We don’t really create all of the problems, anymore than we can exert 100% control over them.

So, I was waiting for the bus with the kid this April morning, hacking and snorting with my virus while he sought to engage me in a discussion of what he wants for Christmas.  The virus and the cadences of autism sent me into one of those mental zones where humor is the only escape, and I got the giggles over a chant that some neo-hippies used to do at a summer camp where I counseled.  It was supposed to be Native American but I think it was really a White suburban hippie creation and, because of its repetitive composition, possibly autistic:

The Earth is our Mother…  The Earth is our Mother…

So I chuckled as that coursed through my virus impaired senses and the kid prattled on about VHS for Christmas.  And of course I amused myself by altering the chant to the title of this post, The Earth is a Mother – …  The Earth is a Mother -…

20160422_143727The Earth is full of good and beautiful gifts, an amazing and delicate array of factors that make our lives possible, sustainable and pleasurable.  But it is also full of indifferent and maybe even evil stuff that would just as soon see us dead.  In fact, it is part of Earthly life to wither and die.

The weeds grow alongside the pretty bushes and flowers and cushy grass.  Care giving is a prolonged exercise in nurturing life while weeds spring up.  It takes the romance out of things, because happy illusions get overgrown by reality.

Some days the challenges bring out the devil in me.  In other moments, the Earth being a Mother- puts me in touch with a love that gets me out of my little self and, for a bit, into a place of peace and joy,

Yet my wings were not meant for such a flight –

Except that then my mind was struck by lightning

Through which my longing was at last fulfilled.

Here powers failed my high imagination:

But by now my desire and will were turned,

Like a balanced wheel rotated evenly,

By the love that moves the sun and the other stars

(Dante, Paradiso XXXIII)

The Beanbag Mountaineers

We were tickled the other night when friends came over with their batch o’ boys.  The guys are really fond of our son with autism, aren’t freaked in the least by his mannerisms (and his tendency to ignore or walk away from them when they try to be friendly) and they have teen and young adult female kin… Joey isn’t super demonstrative but he’s absolutely more social when girls show up.

I (Tim) was passing by Joey’s room and caught this picture of the beanbag mountain of boys hanging with a very relaxed Joey…

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Can you spot the person with autism in this picture?  What was the clue, Sherlock?

Sure, Joey was trying to convince them to help him overcome our VCR protection system.  But they wouldn’t be fooled and a good time was still had by all.

One manifestation of Joey’s comfort is that he will come and sit with the others to eat.  We had a pizza spread and Joey sat himself the group table rather than go off and eat by himself in another room.

We have our share of self-serving reasons to look forward to Joey’s placement in a group home.   But we have his best interests at heart as well.  His social life and skills will be enriched.  He loves us and vice versa, but he gets bored at home, doesn’t want to “do stuff” with us because he perceives that as “work,” and spends a lot of his time nagging us about movies he wants or protesting our VCR protection thingy.  That’s not all autism – that’s normal teen/young adult differentiation.  He needs his own life with peers.

While the waiting goes on, we are grateful for friends who enrich Joey’s life, just by being themselves and sharing good times with him.

 

Assistive technology

According to the United States Assistive Technology Act of 1998, assistive technology (also called adaptive technology ) refers to any “product, device, or equipment, whether acquired commercially, modified or customized, that is used to maintain, increase, or improve the functional capabilities of individuals with disabilities.”

(Digression/Note: spell check prefers adaptive.)

We’ve mentioned too many times to count that our son with autism, Joey, likes to watch movies old school, on VHS.  He also likes to push buttons for rapid replay and change, and thus breaks machines which are increasingly hard to acquire.

After his latest VCR destruction, we went in search of another machine (devouring Tim’s day off, of course) AND some kind of assistive technology to keep Joey from pushing buttons.

We almost murdered the salesman at one store.  When we asked if there were any contraptions to cover off the VCR buttons, he said, “It’s called parental oversight.”  Ah, yes, the old “bad parenting” meme explains it all.  Almost had to go all assistive on his a** attitude.

On a whim (or bit of divine guidance), we checked out a local store that sells “retired” hotel furniture.  And there we found a piece of assistive technology… from some 70s motel… the only one of its kind in the whole store… maybe the last one on the planet…

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It’s almost perfect.  The cabinet space is wide enough for the VCR.  The plywood back has a big ragged hole in it for wires to run through.  The bottom drawers can hold plenty of videos.

Friends came over to help us tote it in and set it up.  The only downside is that the hasps on the cabinet doors are too far apart for the lock I envisioned.  So we had to improvise.  Joey defeated a wire hanger thingy that we fashioned.  Shoelaces didn’t work at first but we doubled them and tied some hellish knots.

He’s grumpy and protesting but we just smile and say, “What movie do you want to watch?   You can watch a movie, just no pushing buttons!”

So he can watch whole features just like the rest of humanity.  If he wants snippets or previews, he can use his old computer and YouTube.

The assistive technology seems to work… for US.  WE feel much better.

Heh heh heh heh heh.

There’s no place like something something

Friends hosted us for Christmas.  The trip to their house meant a ride on quiet country roads, which made the holiday that much more serene.

Before delving into the autism antics, let me (Tim) say that being hosted  after years of playing host is a blessing beyond words.  This year all kinds of accumulated stress and damage caught up with me.  Did I mention that sometimes care giving stinks?  I’m healing up.  And to receive the kindnesses of others is great medicine.

OK, so we have a great Christmas morning with our older son and his wife, take the day slowly and gently, and then head for our friends’ place at a civilized time in the afternoon.

We arrive, and Joey starts to show that he feels every bit at home with these folks.  This is big, as people who live with autism don’t always take to new places and new folks.  What does autism-feeling-at-home look like?  Well…

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He gets out of the car, doesn’t wait for us to walk him to the door OR for our hosts to open it.  He just walks in (shutting the door on us, btw), throws his coat over a banister, kicks off his shoes and starts walking around like he lives there.

Later, he would spot a light on in a guest bedroom where one of our hosts’ guests was reading a book.  Joey, just as he would at our house, decided he didn’t like the light, walked in and turned it off.

When someone else turned the light back on, he flicked it off again, took that person by the arm and “guided” them out of the room.

That situation under his control, he headed for the kitchen and ate most of an unprotected platter of meat sticks.

He walked several miles in circles in a room he liked, ran movie lines (I think he was into Disney’s Pocahontas this time, and our Christmas was all the jollier hearing “You killed him!” bellowed at regular intervals) and, in his ultimate autistic gesture of holiday sharing…

…he passed through a room where Melissa was meeting some new folks.  That family’s dad was holding a can of Dr. Pepper while he chatted with Melissa.  Joey walked by and, without breaking stride, plucked the soda from the guy’s hand as if lifting it from a waiter’s tray and walked off guzzling it.

Everybody had a laugh, which tells you a great deal about why Joey feels so at home there.  While there’s no such thing as a 100% autism-safe house, there are homes that are autism friendly.

Caregivers find these havens precious indeed.

Thanksgiving Guests

For the first time in many years, our family is accepting an invitation to another family’s Thanksgiving table.  We’ve cooked and hosted for many years (I think most of our 25 years as a married couple), but this year an offer has come and we are ready to receive.

As many care giving families relate, it is easier to stay home.  Traveling isn’t always easy for people with special needs; being in a strange place isn’t easy on them; eating unfamiliar foods (or familiar foods prepared by unfamilar hands with unfamiliar ingredients in an unfamiliar kitchen) isn’t easy either.

And if it ain’t easy on the person in our care, it ain’t easy on care givers and it ain’t easy on those who would dare to host us.

But we have some sweet and hardy friends who are giving this a whirl, and this year it means a great deal.  It’s been a year of extra efforts and extra exhaustion for Melissa and me, and to receive care is a blessing that’s hard to put into adequate words.

I want to praise all out there who are spending the holiday with families like ours.  Whether you are the care giver staying put to make it as pleasant a day as possible for those in your care, or you are someone providing a day of respite and refreshment to a special needs family, you are part of something more awesome than you might realize,

(Jesus) said also to the man who had invited him, “When you give a dinner or a banquet, do not invite your friends or your brothers or your relatives or rich neighbors, lest they also invite you in return and you be repaid. But when you give a feast, invite the poor, the crippled, the lame, the blind, and you will be blessed, because they cannot repay you. For you will be repaid at the resurrection of the just.”  (Luke 14:12-14 ESV)

“Thank you” doesn’t seem like enough to say, but those are my meager words.  I pray that you will receive greater, glorious praise at the eternal banquet that Jesus will serve.

 

A catered affair

Melissa, Joey and I had a wonderful evening last Saturday.

I’ve tried to keep it out of this blog so as not to weird people out, but I’m an ordained minister in the church. For the moment. More about that later.

Claudia Tim JoeyBack to last Saturday. I baptized some good friends’ recently adopted daughter. After a joyful service, during which Joey decided he didn’t want to sit and came and stood by me like some kind of test proctor while I was preaching (the church was packed but they all rolled with this just fine), we went over to our friends’ home for a celebration.

It was a big party, as the new mom & dad both come from large families, have lots of friends, employees and professional peers.

Food and drink were catered. And – I get misty eyed relating this – our friends took the trouble to have the caterer prepare a pepperoni pizza just for Joey. And they had cans of root beer for him amidst the wine selections.

Joey found a comfy spot on a couch and didn’t want to go find a table at which to sit. So the caterers actually took the trouble – while serving over 100 guests – to bring him plates of pizza where he sat. Melissa helped him balance things on his lap (and hers) and he was a happy lad, as you see here. Joey smiley

The kindness of our friends, the caterers and everybody else that night was a precious gift to us. Last baptism I’ll be doing at that church. Or maybe last one, period. It was a positive closure for our family.

I’m stepping out of the pulpit. Don’t know if that’s for awhile or for good. That’s something about which God and I need time to talk.

It’s enough to say here that I’m emotionally run down. That’s putting it mildly. Good care giving requires the heart and churches can drain (or cap, or poison) the emotional well.

A bit scary right now, of course. Needing to overhaul finances, seek new income, etc. No crisis of faith – I’m still praying and God seems as close and loving as ever. But your prayers are appreciated as our family goes through all this change.

We’ll still be blogging here, because care giving stinks sometimes but is in our hearts always.