Wondering about the void

Lake Minnetonka

Looking out from the club’s dinning room onto Lake Minnetonka

While Joey spent the weekend in a respite apartment (that’s respite for his caregivers, mind you, he’d rather be home with his own stuff), Melissa and I traveled to a lovely spot in Minnesota  as guests of a church with a big heart for service to others.

We spoke as a couple at a forum for Autism Awareness Month.  It was well attended by folks caring for loved ones with autism and others who have friends or extended family members living with or caring for special needs.

A number of great questions and comments came up.  I want to return to some of those here on the blog.  They’ll be in no particular order except as to when they pop back into my head.

Melissa brought up what we call “the void.”  Taking care of our son Joey for the last 23 years has blessed, warped, changed or any-number-of-other-verbed every aspect of our family life, our marriage included.

I hear similar thoughts from caregivers in other situations, such as those caring for a disabled or chronically ill spouse, or grown kids caring for parents with dementia or Alzheimer’s.  Care giving takes over everything.  Some relational bonding is put on hold or evaporates, while the care giving routines become a kind of alternative glue holding people together.

Then the daily care giving goes away.  The person under care dies or is institutionalized.  In our case, Joey is on the waiting list for a group home opening.  Our dawn to dark (and sometimes in the dark) duties will move out with him.  Melissa and I will be staring at each other with a lot of “Now what?” space in between us.

Daves dad and joeAs important and immediately refreshing as we found our trip, we were urgent about getting things back to “normal” and we picked up Joey and whisked him to one of his favorite restaurants. Daves mom and joe The house might have been uncomfortably quiet as we unpacked a few bags and…

…and what?

This is ground we’ve not been over, but can see in the not-too-far distance.  We are trying to regenerate some of our couple time together, and keep up friendships, and envision things we want to do when we’re free to get on with them.

But we’re also interested in the experiences of those who’ve been over the territory, especially as couples.  Did you experience the void?  What did it do to your relationship?  How did you (plural you, y’all) come out on the other side?  Or did you?

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)

…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.

Trying to cancel a pity party

Care giving pushes a person toward their outer limits.  The repetition of unpleasant tasks and the human desire to receive as much or more than we give can make the caregiver sad, surly, stressed out or all of the above.

Throw in some of life’s normal irritations and it’s time for black confetti, diabolical tunes and spoiled snacks – a pity party.

A wise friend once advised me to get ahead of the onslaught by asking myself, “If I were the devil, what would I do to upset Tim?”  This week, it’s been an overload of all the life crud I’d rather not deal with;

  • Bureaucracy – got a call from the pharmacy that insurance was declining to refill our son’s array of medications, which include anti-seizure and anti-aggression chill pills.  So I had to dig through piles of forms that all look alike, call automated “customer service” numbers, hack my way to a live person who wouldn’t talk to me because of HIPPA (he, they’re my son’s meds, not mine), etc.  Hate doing this on my best day.  Got it fixed but it left me frazzled.
  • Money – I get to pay bills AND do taxes on my upcoming days off.  WooHOOO!  Yay, Me!!!!!
  • Conflict – part of my work has me representing my superiors to two dug in groups that refuse to resolve a conflict and keep trying to manipulate me to to choose between them.  My superiors simply want them to make up or get lost.  I don’t like delivering bad news; I’m a decent care giver because I’m flexible and it is not easy for me to be bossy; I like peace and hate being around people who’ve lost their rationality.  Today I get to call the two faction leaders and tell them, “You’ve exhausted the patience of my superiors.  You’re both gone.”  Even more delicious was the whole night anticipating these calls.

pathetic-7Pity parties make us passive and hapless.  The make us throw up our hands in woe and just let circumstances continue to crush us.  What to do?

  • Stop bundling the problems as one big mess.  Mentally separate them.  Take them one at a time.  They are not related.  They are not God’s wrath coming upon you.  And they will go away the sooner you stop pity partying and take them on one by one.  Don’t look at them all at once or the whole universe will look like your problem.  Give each one its time and place, curse it if you must, and then get down to dealing with it.
  • Delegate.  Can someone else help?  I just realized that someone else is going to see the feuding hard heads face to face before I do.  So, I will still make the bad news phone calls, but my colleague can deliver the formal letter from our superiors.  One less bit of stress and wasted time.  Don’t play the hero; accept offers of help or better yet, stop waiting for an offer and ask for it.
  • Practice spirituality.  Stuff that’s hard can be turned to your advantage.  As a follower of Jesus, I’m aware of the words  In all things I have shown you that by working hard in this way we must help the weak and remember the words of the Lord Jesus, how he himself said, ‘It is more blessed to give than to receive’  (Acts 20:35).  Yes, care giving is about giving more than you get back.  In our animal flesh, that’s a big negative, but in the mystery of the Spirit it’s a way to find blessing, that is, deep and abiding happiness.  So wrestle with the invisible possibilities instead of just slogging through the pathetic feelings.
  • Take your times of rest and recovery.  Sometimes this means just turning away from the problems when you’ve done what you can do.  Other times it means to celebrate because you’ve knocked something off the list.  Rewarding yourself for a victory will help you go out and win other battles.

I’m sure there’s more stuff to list but you know what?  I’m tired of thinking about it and I’m going to drink coffee and get those stupid phone calls out of the way.

Hope your weekend is good.  If you have a pity party planned, cancel it.

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.

 

90s Pop Seizure Disorder

Right now we are having work done on our house.  Good stuff we’ve wanted to do, and so far we are having good luck with the contractors coming by day when our son with autism is out of the house at his community program.

This evening Melissa and I were having a glass of wine.  Joey was on his computer down the hall.  It was peaceful even with a bit of disarray from the projects.

All of a sudden Joey let out a throaty bellow.  I jumped up and ran down the hall, expecting to find him on the floor from a seizure.

But he was on the office swivel chair, smiling.  Apparently, the sound was just him trying to imitate this:

He saw my agitated face and, as is his norm, started chuckling. I huffed and puffed and stammered something like “Oh you like Michael Bolton.”

I went back and tried to resume wine inhalation. But Joey came out into the front room all smiles to say,

“You like Michael Golden.”

Yeah, Golden, Bolton, whatev.

Caregivers resonate more with these lyrics (forgive the @#$^@!!^ AARP commercial if it pops up):

In the night I hear you speak
Turn around, you’re in my sleep
Feel your hands inside my soul
You’re holding on and you won’t let go
I’ve tried running but there’s no escape
Can’t bend them, and I just can’t break these….
Steel bars, wrapped all around me
I’ve been your prisoner since the day you found me
I’m bound forever, till the end of time
Steel bars wrapped around this heart of mine

Seizure Disorders

Last night I was out tinkering with some uncooperative lights by our front door.  A neighbor came up and invited me to come over to a gathering around a wood fire in the driveway next door – a group was there and they wanted to “get to know the mysterious people in the gray house” (that’s us).

It was a pleasant gathering and a good chance to explain my hermit-like existence.  Care giving means keeping a close watch.  Our adult son with autism had seizures set in when he entered his teens, and there’s just no leaving him alone in the house.

The neighbor who invited me over perked up – turns out his adult son, who is not autistic, just started having seizures.  Opened quite a door toward getting to know about one another’s families, that.  He and his wife worry that they can’t keep constant tabs on their son, who is athletic and likes to take swims in lakes by himself, among other behaviors that wrack parents’ nerves.

I know a clergyman in another state who called when the same problem intruded on their family.  Their son, despite seizures, graduated from medical school and got married.

Apart from the neurological damage that can accompany seizures, the danger of falls with head and neck injuries creates stressful isolation and hyper-vigilance for care givers.  Trying to stay in proximity to another person, “just in case,” warps both social and emotional life.  Melissa and I couldn’t sit around the neighbors’ fire together – one of us had to stay in the house to watch Joey while the other socialized.

Seizures leave a lasting mark on care givers, too.  Here’s a bit from our upcoming book (really, we’re just waiting on the cover art… release is imminent), Blooming Idiots.

One of the worst stings our family suffered was Joey’s teenage onset of grand mal seizures.  The first one came with no warning and we thought we’d watched him die right in front of us. It is a sickening memory.

Although Joey’s seizures are less frequent since he got past puberty’s brain chemical chaos, one will sneak up on him now and then. The big danger is head or neck injury from a fall.

Any loud noise will make us scramble to respond. I noticed my anxiety rising at a gym, when the really big lifters dropped their massive weights at the end of a set. The kaboom of metal plates hitting the floor sounded too much like a Joey seizure in progress.

One night at home, Melissa heard a crash and rushed out of our bedroom to help Joey, only to find it wasn’t Joey down. It was me. I’d gone to help Joey dry off after his bath and slipped on water he’d splashed out of the tub.

I was fine, but Joey’s reaction wasn’t what one might hope. He was laughing. I mean cracking up. To him, it was like a pratfall in a comedy. He thought I was doing something to entertain him. It was up to Melissa to say the right things like, “Are you OK?”

If you have family or friends who are caring for a person with a seizure disorder, it means a great deal to give them a break.  Learn to recognize seizure onset so you won’t panic, and find out about the proper first aid.  Giving a care giver some down time won’t totally purge the stress we carry, but it reduces it, at least for awhile.

More than that, it can save a life.