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.

Beer, bang, blood & BS

O, God, where to start retelling last night?

Got home from work in the late afternoon with two consecutive days off coming up. We had a fun Chinese pick up dinner; Joey downed his own weight in Lo Mein.

Melissa and I were settling in to binge watch something and I was so relaxed that I had a second beer.  Then a third.

Then, a floor shaking bang and noise  like the fusion of snoring, opera and a train going by.  Joey had a seizure.

It must have been abrupt because he usually senses them coming and gets to a couch.  This time he was down on the floor in his closet with his face shoved into the floor.  It was hard to get to him and we needed to make sure we could keep his airway open.

I’d just downed that third beer…

Melissa managed to wedge herself in with him, get a hand under his head and get his nose and mouth out of the carpet so he could breathe.

When she got her hand free, it was covered in blood.

As the seizure subsided, Joey began to rouse himself a bit and we were able to get him out of the closet and inspect his head.  There was running blood all over his left ear and we couldn’t tell if it was coming from an external cut or from inside of his head.

Melissa said, “We need to take him in,” meaning to the ER as it was evening, and she was right.  But I’d had three rapid beers and she was going to have to drive.

So we loaded up, her hair a mess and no makeup (that doesn’t bug me but she hates going out like that), Joey and I in shorts despite the winter temps.

I had the presence of mind to call the ER and let them know we were on the way and what had happened.

OK, OK, I need to back up just a bit so I can tell you about the BS.  As soon as we realized that we had to get to the hospital, Melissa had the insight that Joey gets combative after a seizure.  He just wants to sleep and doesn’t want to be poked, prodded, asked questions… it is like a man-cold on steroids.  He can get violent if pushed, no matter the pushers’ good intentions.

So she showed Joey her bloody hand and said, “Look, Joey, mommy has an owie.  I have to go to the doctor.  Will you help take mommy to the doctor?”

It worked.  She actually turned him into a caregiver, and, although we could see he’d rather do something else (hey, that’s a working definition of care giving, ain’t it?), he wanted to help mommy be OK.

This morning I realize that autism worked in our favor.  His older brother, the engineer, would have asked, “Hey, if mom’s injured, how come she has to drive?”  No such problem with Joey.

At the ER, Melissa quickly informed the staff of the BS story under which we were operating.  It was wonderful – all of them, from the receptionists, to the nurses, to the admitting clerk, to the doctor – adopted the line.  “So, what happened to you,” they asked Melissa, “and where are you hurt?”

Meanwhile, they convinced Joey that getting his blood pressure would be helpful to treating his Mom.

They very dramatically cleaned the blood off her hand so Joey could see mom getting fixed, then told him that some of the blood was on him and they needed to clean him up, too.

Thanks be to God, the bloody wound was an external abrasion.  No stitches, just some topical disinfectant and a day of rest (today) at home.

And, because of Melissa’s impromptu and epic BS, no combat.

No pics to share.  I wasn’t thinking of blog illustrations at the ER.

20170130_104531

So here’s one of last night’s empties and some morning coffee.  In a mug that Joey painted for me.

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.

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.

+++

Crass plug:  if you might want to win a Kindle, our book or other books by some good authors, here’s an opportunity:

a Rafflecopter giveaway

High Fives All Around!

Just caught this on Twitter:

screenshot-2016-11-15-18-07-57

We have a month of our own!  Did you know that?  Now quit gloating and clean up some bodily wastes or go to an IEP or do some laundry or something, dang it.

But seriously, we all need some affirmation in this care thing we do.  So take a deep breath and know that you are valuable in ways that those in your care, those watching and even your own heart and mind might not be able to articulate.

God bless you.

You can read more about National Caregivers Month here.

Permanent Markers

After the death of her spouse, the woman who cared for him through his terminal illness wondered if she could still attend her caregiver support group.

Nobody in the group had to think twice – “Of course you can come here.  You’re always one of us.”

My wife and I wonder what life will be like once our son with autism moves into a group home.  I think it safe to say that he’s changed us both in some permanent ways; we’ll always be “care givers” even when not running around cleaning up messes and dealing with emergencies.

thomas-by-carravagio

Caravaggio’s rendering of Jesus’ appearance to Thomas – “And this one’s from washing bedding at 2 a.m.”

The Bible says that when Jesus rose from death, his great victory was not a complete makeover.  He carried the wounds of his execution.

Eight days later, his disciples were inside again, and Thomas was with them. Although the doors were locked, Jesus came and stood among them and said, “Peace be with you.” Then he said to Thomas, “Put your finger here, and see my hands; and put out your hand, and place it in my side. Do not disbelieve, but believe.” (John 20:26-27 ESV)

Care giving leaves marks on our souls, if not our bodies.  Some marks are wounds.  We tense up at certain sounds.  We continue to sleep with one eye open.

But other marks can make us glorious treasures to others.  Empathy.  Hard earned wisdom.  Humor.

We stay in the care giver club, not only to be cared for but to be good companions to those still giving care hands on.