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.

NO, IT’S NOT BAD PARENTING

Award winning author Norma Gail asked me some probing questions in an interview shared on her blog.

Here’s a bit of it, with some key quotes available for Tweets embedded by the host,

NORMA GAIL:  Autism affects 1-68 children in America. That’s more common than most people probably realize. What are the most basic things you wish people knew about Autism and the families it affects?

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Lifted here.  You might find the article amusing, too.

SOMETIMES CARE GIVING STINKS: I think I speak for many families of children with autism who want to scream, “NO, IT’S NOT DUE TO BAD PARENTING.”  It’s a neurological disorder, most likely genetic rather than environmental in origin (although people debate that with some ferocity).  One of the hardest things is that kids with autism are impaired socially and so their parents can invest sacrificial work with little to no emotional connection in response.  We were spared that – Joey is very connected emotionally, albeit in some quirky ways.

There is no “cure” for autism or any one therapy that is useful in all cases.  Families hope for a “silver bullet” that will solve things, and this can leave us open to bad advice, blaming or other traps.

Parents deal with feelings similar to grieving a death.  Various hopes and dreams we hold out for a typical child often have to be given up for a child with autism.  Some kids on the autism spectrum grow up to play sports, perform in the arts, excel in academics or vocational skill, get married and all kinds of other things we think of as making for a “good life.”  But many will never experience some or all of those things.  They have other pleasures – parents have to learn to love those.

Siblings can feel ignored due to all the effort and attention put into caring for the child with autism.  The whole family is impacted.

Allies mean a great deal.  Educators, medical people, community programs, understanding churches (not always easy to find), and just plain caring folks make life better.  There’s a neighbor of ours who routinely keeps going down our sidewalk when clearing his of snow – the time and effort he saves us is a precious gift.

NG: What are some of the greatest challenges faced by parenting a child with a disability?

SCGS: As the book points out, family caregivers – and this applies in situations beyond Autism, such as Alzheimer’s, spousal disability and many other conditions – are trying to fulfill roles beyond the knowledge, skill, energy, patience and finances of a typical individual or family.  We get stretched beyond our limits and, really, beyond any realistic expectation of becoming “good at it.”

In our case, we had to deal with Joey’s “meltdowns.” Kids with autism become frustrated when they can’t understand or be understood by others, and this can lead to a violent outburst.  It’s not the same as a tantrum, in which a kid wants a toy.  It is an all consuming surge of energy in an effort to connect with a world that seems out of touch.  It is heartbreaking to try and contain a beloved child who is putting you in serious danger – Joey would punch, kick, bite and throw objects at us.

There were several years where we didn’t think that Joey or any of us would ever sleep.  The stuff that makes you laugh after the years of raising a baby keeps going when autism is in play.  I sometimes tell people, “Imagine having a combination of newborn and toddler for a couple of decades.”

Parents share war stories of dealing with “the system.”  Some school districts are downright hostile to special needs kids, considering them a financial drain on services for “normal” kids.  Then there are the insurance issues, efforts to see specialists, quests for specialized therapies – it is exhausting and sometimes fruitless.

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Check out the interview.  Leave a comment there on Norma Gail’s blog and you might win a signed copy of Raising a Child With Autism.

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)

Worth reading, discussing and doing

Forbes Magazine has a #LifeHacks piece called 4 Critical Things To Do Before Becoming A Caregiver.  It is concise – almost a simple checklist of ways to prepare “General, Legal, Medical and Financial” documents and plans before becoming a care giver to a family member.

Ideally, discussion and preparation should go on while the family is in good health.  Spouses should talk about plans as they age; extended families should talk things out with parents, grandparents or other aging loved ones.  Families like ours, engaged in long term care of a special needs child, need to get ahead of these matters as well.

Unfortunately, care giving falls into many lives without time to prepare, as the result of a catastrophic illness or accident.  This article will still serve as a valuable resource, even under difficult “catch up” conditions.

While the article does mention getting “Names and phone numbers of religious organization and points of contact,” we would amplify this to include discussion and documentation of funeral/burial wishes, whether religious or not.  Don’t underestimate the wear and tear on care givers and other survivors;

  • the unexpected cost of a funeral, often setting up stress between unexpected price and available budget, leading to guilt and family squabbling;
  • the bombardment of questions – “What music at the service?  Burial or cremation? Who is going to speak?” – that comes in right when survivors just want to be still, remember and grieve;
  • the challenge of providing an event for a large number of people, many of them strangers to the survivors, on short notice;
  • oh, so much more.

It is a great gift to the family to have talked out and written down the loved one’s wishes in advance.  Most funeral homes and many churches have worksheets that ask all of the relevant questions, and having these available at the time of death takes a great deal of strain off of those dealing with loss.

…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.

RED LETTER DAY

I HAVE NO FREAKING IDEA WHAT A RED LETTER DAY IS BUT I’M TYPING IN BOLD, RED CAPS TO CONVEY THE ANGER WITH WHICH I WOKE UP ON SATURDAY.

IT WAS THAT FREE FLOATING ANGER ABOUT ANY AND EVERYTHING.  IF YOU’RE A CAREGIVER YOU’VE PROBABLY HAD IT; IF YOU KNOW A CAREGIVER AND THEY SEEM CRANKY FOR NO “GOOD” REASON, YOU’RE PROBABLY WITNESSING AN EPISODE.

ON FRIDAY NIGHT MY WIFE FOUND AN EXCELLENT SERIES TO BINGE WATCH.  I WAS REALLY ENJOYING IT BUT OUR SON STARTED HAVING “NEEDS.”  HIS BED NEEDED CHANGING.  THEN HE DIDN’T LIKE THE TEXTURE OF THE NEW BED SHEET AND WANTED A DIFFERENT ONE.  AND THEN AND THEN AND THEN…

AS A MALE INTROVERT, THE MOST UNSETTLING THING THAT CAN HAPPEN IS TO BE RIPPED OUT OF MY THOUGHTS AND ENJOYMENTS.  I WAS REALLY ENJOYING THE SERIES WITH MY WIFE, REALLY ABSORBED IN THE ACTING AND THE COMPLEX STORY.  TO KEEP GETTING YANKED INTO CARE GIVING MODE PUT ME OVER AN EDGE.

OK, OK the flaming is annoying me, too.  Enough.

I try to avoid posts on “How to Be a Great Caregiver” but I hope a few insights from my day are useful to someone out there.  What to do with that free floating anger?

  • Count to 10 and then multiply.  Deep breathing, slow counting, something, anything to help your mind regain perspective over your overwrought system.  A good therapist taught me to see negative emotions as waves – they are strong and scary but they peak and subside pretty fast.
  • It sounds cheesy but “accept that it’s just a feeling.”  Most caregivers get overworked and some nasty feelings tends to hang around.  Tell yourself something boring and objective like, “OK, I’m in a bad mood” and get on with the day.
  • Do something you enjoy.  If you’re an introvert, you need to assert a claim to some private time so you can read, ponder or whatever.  If you’re an extrovert, you need to be with others whose energy refreshes you.  NOTE:  I don’t mean have a booty call or affair.  Think about it, please.  If you are overwhelmed by the needs of someone in your care, do you really need to open another potentially insane, needy relationship?  Plus it’s just plain wrong.
  • Pray, if you are a person of faith.  Learn to pray in ways that aren’t just supplications for God to fix this or that, but are times to focus upon and enjoy the greatness and goodness of God.  I started my morning prayers ANGRY and finished someplace near sane.
  • People without a faith orientation might describe the above as “getting out of yourself.”  So go outside, gaze on a breathtaking feature of the landscape, engage in an absorbing activity (somewhere you can’t be interrupted!!!!!), do strenuous physical work or some other something that doesn’t let you stew on you.

Hope this helps.  Blessings on what’s left of your weekend and on the week to come, my brothers and sisters.  Now I gotta go Google “Red Letter Day.”  No idea what that is.

“Could be worse”

That saying is too often dropped on a person when they are in pain.

I mean, how often does it really result in, Wow, you’re so right.  Because you said that, my hurt just went away and I feel all better!

Guys (literally, guys for this illustration), did that gorgeous stranger ever jump into your car because you yelled Hey, baby, you fine! out the window?

Could be worse is like that.  Tends to be counter productive.

I was musing on it last night.  My son with autism went with me to a fund raising dinner for a family who’d lost a young man in a construction accident.

joe-eating-ice-creamHere’s my son eating ice cream at the event.  He didn’t like the volume of the loud band, so we made a contribution, said a few passing hellos, ate and left.

I sat grieving the loss of social normalcy in our family.  We couldn’t visit with friends, ask if so-and-so was there or any other normal stuff because our son needs us close at hand and his needs control much of what we can and can’t do.  I was able to give the deceased’s mom a quick hug but couldn’t really spend time with the mourners.

And of course Could be worse played in my head, louder than the band.

Our son isn’t dead, after all.  We have him to enjoy in so many ways, even with all the crud that autism brings.

But one of the struggles for caregivers is prolonged grief…

Grief for lost dreams, when a child’s disability wipes out traditional expectations;

Grief for lost intimacy when a spouse’s or partner’s illness takes it away;

Grief for loss of golden years when something like Alzheimer’s annihilates connection and shared memories;

Grief for… fill in the blank with one of many living losses caregivers experience.

Sure, could be worse.  But it is real, even when one holds all the relative losses in perspective.

grief-meme

From lessonslearnedinlife.com

We’re all the wilderness together, as the old graveside prayer reminds us…

In the midst of life we are in death

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:

20161213_080533

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.

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.

Toll Road

The costs of care giving pile up.  Along with financial obligation, amplified by a disabled person’s reduced or eliminated income, there are emotional and physical tolls to pay.

Yesterday I preached in a town about 100 miles to our north.  The morning was chilly, but during a very filling lunch after the service, the sun came out and began to warm things up.

Driving back down the interstate the big meal, the sun through the windshield and my perpetual lack of deep sleep got the best of me.  I fell asleep at the wheel.

Thank God I had a friend along on this trip (one I usually make on my own).  I heard him saying Whoa there and realized his hand was on the wheel with mine, keeping me from veering off the road.  We pulled over and he drove the rest of the way.

Melissa tried to let me nap but this, that and the other thing kept me awake.  I have a few days off coming, but my mind is occupied with catching up on stuff I let pile up over the last few tired weeks.  So sleep remains elusive and, when it comes, is fitful.

Then Joey had a minute long seizure.  Melissa got to him first, and his thrashing was so violent that it was all she could do to secure his head and get him on his side to keep his airway open.

So more physical and emotional tolls piled on.  Melissa’s strain in grappling with the seizure.  The rush of adrenaline as we reacted to it, followed by the big crash once things settled down.  The frustration with our inability to decode Joey’s language – he kept saying Bath with mom, which usually means here’s my preference for help with my routines , but this time was an effort to put into words his sense of an oncoming seizure.

Objectively, Melissa and I would agree that our lives are going pretty dang well right now.  But the daily nickel and dime tolls of care giving add up.img_20140806_150524_781

We share tales and encouragement for other family caregivers in our new book, available at Amazon.com.