Isolation

The first book signing for Raising a Child With Autism is history, but this isn’t about the book.  It is about the people who stopped to talk at the display table and others who’ve been in touch via the internet.  My prayer list keeps growing with their names and needs.

One man took a break from his job down the street from the bookstore to come in and describe his family’s unique challenges.  They care for a son with autism.

We noticed that people stopped inviting us to stuff.  I think they’re afraid of our kid.  My wife is at home alone with him more and more.  She’s really feeling isolated.

All kinds of care givers suffer in similar situations.  People don’t invite you out or you find it too much of a hassle to go.  Competent babysitters or respite providers are hard to find.  The person in your care is agitated if you go out on your own, but resists going along when invited.

Many Christians will hear a familiar Bible lesson on an upcoming Sunday in Easter season.  It begins with people in isolation,

2012-12-22_09-13-56_966When it was evening on that day, the first day of the week, and the doors of the house where the disciples had met were locked for fear…

But the locked door is as powerless against what happens next as, well, our bedroom door when our son Joseph wants to bust in about something.

Although the doors were shut, Jesus came and stood among them and said, “Peace be with you.”

We weren’t able to attend an Easter service.  I had to work and Melissa had to – did you guess? – be home with Joe.  Yet Easter isn’t less Easter to us, because of the one who burst the isolation of his tomb and, by his Spirit, reaches into the isolation that afflicts the human race.

There’s no easy set of “steps” to make this happen, much as I’d like to bottle and sell such a formula.  But I suppose it begins like most efforts to end isolation, with a conversation,

And I tell you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and the one who seeks finds, and to the one who knocks it will be opened. What father among you, if his son asks for a fish, will instead of a fish give him a serpent; or if he asks for an egg, will give him a scorpion? If you then, who are evil, know how to give good gifts to your children, how much more will the heavenly Father give the Holy Spirit to those who ask him!”

We are blessed this Easter.  Although we couldn’t be in church, we will soon have dinner with friends who love Joey and welcome him into their home.

We are grateful to all who read what we share, who leave messages and otherwise communicate with us.  You have been part of God’s response when we’ve asked, sought and knocked – you help deliver us from isolation.

May God’s peace be always with you.

…when such a thing happens…

Everyone reading this book – indeed, every human being – needs to know that when such a thing happens, we are not alone.  Victor Lee Austin, Losing Susan, Brazos Press 2016.

If you are a family care giver, or if you know one, Victor’s book (and it really turns out to be his late wife Susan’s book just as much) can be at once a splash of cold water that wakes you up and a strong arm around you for comfort.

20170206_141154He tells the story of his wife’s long terminal illness and his efforts to care for her with great love and humility in a pure sense of that word, by simply being objective and not forcing any judgments.  Some questions are left hanging, and this book gets across how normal and necessary that is.  No tidy answers to the big questions, but great insight into family care giving and a gift of compassionate companionship for those who are caregivers.

Just as many combat veterans need others who’ve been in battle to process what’s happened in their lives, care givers will find in Victor and Losing Susan a level of understanding and acceptance that helps process uncomfortable emotions and experiences.

Reading this is a reminder that care giving thrusts orderly souls like Victor’s into chaos, free spirits into stifling routines, thoughtful people into impulsive action, rational people into irrational situations, spontaneous people into detailed planning, extroverts into isolation and introverts into a land of disintegrating boundaries.  And what’s worse is that this all involves the loss of the person most a part of us and most able to buffer us in life’s hardships.

As I read this book, I was struck by how much I would like to see couples read it while preparing for marriage.  God forbid that they should have to walk the same course as Victor and Susan, but they will walk some part of it.  This book, by telling a family story rather than framing a lecture, brings out the deep reality of

In the Name of God, I take you to be my wife (to be my husband), to have and to hold from this day forward, for better for worse, for richer for poorer, in sickness and in health, to love and to cherish, until we are parted by death. This is my solemn vow.  (Book of Common Prayer, 1979)

That kind of promise will take us into situations for which we are radically unprepared and, in all honesty, incompetent.  As Victor describes so well,

I never had any confidence about how much I should push or encourage her and how much I should step back and just let her be.

I’ve talked to a lot of people who have to care for others whom they love, and we always recognize this point of commonality.

This common lack is why care giving can’t be pulled off all on one’s own.  We need companions and, if we can recognize it, we need God’s grace.  Losing Susan is a voice for both.

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)

Just when I thought I knew everything…

I got some pleasant surprises.

Last night we had a group of Dinka (South Sudanese) friends over for dinner.  We were a bit apprehensive, since Joey hadn’t met them before and unfamiliar groups can unsettle him.

Also, as we learned when he had a therapist from the UK, he finds accents amusing.  He starts laughing and mimicking them.  It cracked him up that the therapist, Mark, introduced himself as Mahk.  Joey couldn’t get enough of saying Mr. Mahk.  And laughing until he was short of breath.  So we wondered what he might do with African-accented English.

Anyway, Joey was fine with our friends last night.  He went on about his normal routines, didn’t stare or laugh, and wasn’t bothered in the least by the new people and voices.

Maybe he’s grown some more.  Or maybe there’s something calming about the Dinka – our dog didn’t even bark at these first time visitors, and she barks at long time friends and family.  She did, however, continue her cross-cultural dedication to mooching food and wanting her hindquarters scratched.

Another pleasant surprise showed up in a friend’s message on Facebook this morning.  chucky-cheese-adCheck this out…

That’s right, Chuck E. Friggin’ Cheese!  Sensory overload central, even for the neurotypical.  I mean, it turns parents autistic after five minutes of exposure, right?  This is amazing.  I can’t imagine how they pull it off, but good on them for caring in this way.

We are in the season for surprises and gifts, it seems.  May many wonderful blessings come your way.

The people who walked in darkness
have seen a great light;
those who dwelt in a land of deep darkness,
on them has light shone.  (Isaiah 9:2)

Assume Everything

There was a spat in Christianity’s early years. Some understood Jesus to be a god-man like those of ancient myths, wearing flesh like a costume but really a divine tourist when all was said and done.

But the view that prevailed and remains is more mysterious. It says that Jesus is both the Holy God and fully human. He enters our humanity holding nothing back. The slogan of those who argued for this was “That which was not assumed is not redeemed,” that is, if Jesus didn’t share every aspect of our humanity (except for sin), then humanity cannot enter the kingdom of God with him. Christmas is about God assuming our human nature so that our human nature can be completed in eternal life with God.

In this beautiful 4 minute video, special needs children and their caregivers put on the familiar church Christmas pageant. With them, we can realize that special needs and caregivers’ fears and shortcomings are all part of what Jesus came to redeem. We all matter to God.

Sleeping on the couch

No, Melissa and I are not having a fight.

Joey moved out to the couch this week.  He does this every year when the Christmas decor goes up.  He likes to snooze by the light of the Christmas tree.  I blogged a picture of that two years ago.

The rhythms of family life are meaningful.  Autism craves order in both macro and micro forms.  So not just daily routines but seasonal and annual cycles can be our friends.

Another important aspect of Joey’s annual relocation is that physical environment, even with some quirky changes, can make a difference in the quality of life for a person with autism.

Here’s a useful page from Australia about Workplace Modification.  Practical adaptations, such as work table heights, wider aisles for wheelchairs and the like are obvious (or should be).

But so are aesthetic or other tweaks that make the work space more enjoyable.  One agency we visited here had Christmas lights rigged to come on each time the worker completed a particular task.  (Note: such adaptations are highly individual, because the flashing light that gives pleasure to one person can be a seizure trigger for another).

20161129_121516

Not Joey’s actual feet.  Reenactment by a trained professional.

 

Holidays are times when most of us modify our homes.  They are an opportunity to discover changes that make life more comfortable and pleasurable for those in our care.

 

 

Let’s be clear

So Saturday I was grumbling and getting ready to clear heavy snow.  Not deep snow, but weighty.  Snow comes down fluffy when we’re lucky but dense when we are not (although the dense stuff is important to watering the earth so there’s that.)

20161119_104250Anyway I got home from an errand to see this:

“Well big deal,” you say, “it’s a sidewalk.”

Yes, but it’s a clear sidewalk.

See the law here is that you have 48 hours after a snowfall of 2 inches or more to clear the sidewalk in front of your property.  Which means the clock was ticking on a precious day off and I was going to have to spend it out in the cold pushing snow here and there.

Except that a neighbor cleared my sidewalk.  He was out clearing his and just kept on going to clear mine.

Folks, I need to tell you that seemingly small things like this loom very large in caregivers’ lives.  Now, instead of pushing snow on my day off, I’m reading a novel and watching football and going to have a leisurely dinner with my wife.

Yes, we would all like to inherit the proverbial million dollars or be otherwise over-the-top-blessed.  But for caregivers, let’s be clear, a chore taken over by some other person feels like that million bucks.  It is respite and refreshment.

If you know caregivers, you don’t need to do their most Herculean tasks to be a hero to them.  Just knock out some stupid little annoying chore, and flex.  You’ll be admired and appreciated beyond what you can imagine.

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?

img_20161021_173959

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