Worthless and weak

I whined about Mother Nature last night, so I guess I can do the same about God the Father this morning.

Care givers have ample experience with unanswered prayer. Prayer that the diagnosis be wrong; prayer that the condition go away; prayer for resources that don’t come; prayer to “do it right” and fix everything that needs fixin’.

OK, sometimes the prayers are answered. But the great mystery is that so much of what’s good, true and beautiful comes when we are rebuffed,

Three different times I begged the Lord to take it away. Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong. 2 Corinthians 12:8-10, NLT

So up and at another day, friends. Let’s affirm the reality together, and let the power flow…

Mother Nature, Queen B_@t_h

Nah, I don’t need to spell out the word that every white kid has adopted to self-identify as something other than every white kid (Is there a mathematical formula to express that?).

Anyway, the view from our back deck last night:

So Ma Nature comes struttin’ through here like a Kardashian in front of a camera.

You know what her histrionics can do to an internet signal? The signal upon which your kid with autism (another of Queen B’s contributions) is depending for a bit of entertainment to relax for the night?

The signal which is interrupted, sending the kid into your room with anxiety rising into rage?

The signal which, when lost, can only be explained to the kid with stuff like, “The computer is broken. Uh, until tomorrow…,” the saying of which can put you on the bad end of a person with autism’s violent meltdown?

UPDATE: A friend made contact to note that her daughter with special needs had a seizure due to the systemic disruptions caused by the storm. I was so ticked off for my sake that I neglected to mention Mother Nature’s fine contribution to those in our care.

Thanks, Mother Nature.  Thanks a bunch.

Have you seen this man?

Soooooooo…

We went to a wedding over the weekend.  All three of us – our son with autism included.

There was much in our favor.  The couple came from an extended family of friends that our son, Joey,  knows and enjoys.  The atmosphere was happy earthy rather than formal and uptight.  The weather featured a few of the rationed really-nice-days allocated to South Dakota every year.  And there was food to be downed.

As I shared earlier, the rehearsal went really well for our whole family.  And we were going back to the same place with the same folks for the wedding and reception.

Something changed.

Maybe it was the volume of the music in the reception hall.  Maybe it was the bigger crowd of people.  Whatever it was, it brought out Joey’s “best.”

5118Here’s a surveillance photo of the suspect.  Notice that the look isn’t very happy.  That little bucket was full of chex mix for snacking – he pulled it to himself, spilling some and playing tug-o-war with us as we tried to retrieve it.  Calm words about “sharing” failed.  Then he ate all the chex out of the mix and left us with just the pretzel bits.

What you might not be able to tell from this pic is that he’s not in a chair.  He’s on his knees on the floor.  We tried to coax him into a chair but that agitated him.

Then he scooted on his knees out into the middle aisle of the reception hall – just as the wedding party was set to make its entrance.

Joey’s figured out that he’s big enough to physically resist mom, so I had to hunker down on the floor and drag him just enough to clear the aisle until the wedding party made it through.

Then he stood up and started walking around in front of the head table, which of course was when people wanted to be taking pictures of the couple and their gorgeous bridesmaids and groomsmen.

I managed to stay just calm enough to convince Joey that he didn’t have to sit if he went and stood by the windows along the wall.

The long and short of it is that Melissa and I enjoyed our friends’ wedding very much, we all had a nice dinner and drinks (several drinks in reaction to Joey) and then came home and collapsed.

Care giving is a game of home court advantage – you usually wind up losing on the road.

My picture of defiant Joey – actually the whole vibe of trying to handle him – reminded me of this recent movie scene:

 

 

Only human

Just caught a short, brutally honest article from the perspective of caring for a person with dementia or Alzheimer’s.

In Caregivers Are Only Human, Rick Phelps writes,

frayed rope

Image from the linked article.

Everyone loses their temper once in a while. People say things to each other that they don’t mean under far less stressful situations. Caregivers are under an incredible amount of pressure, and they are not immune to letting their emotions get the best of them. Dementia adds yet another challenge to the mix.

There are several comments at the article that are worth reading as well.

In Raising a Child With Autism, I describe an ice storm that clobbered our town a few years ago.  The aftermath of that mess serves as an image for caregiver breakdown,

Sometimes physically, but more often emotionally, caregivers sag like ice-burdened trees. We wonder if our groaning means we’re bending with the effort or if it’s the prelude to falling down.

All relationships – not just care giving situations – can take us to our limits and show us at our worst.  As author Anne Kennedy reminds us with a recurring chapter heading in her book for “angry or worn out people,” You Still Can’t Do It.

Which is why care giving or just plain ol’ family life can be the door to discovering the unearned, undeserved favor of a loving and very patient God.

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?

Leonidas

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)

Inside out

I have to laugh at our family on this quiet Saturday morning.

We’ve had a couple of ER trips over the last two weeks, all of which we handled just fine.

Major crises become run of the mill in care giving families.

But little crap can set us off like 4th of July fireworks.

Joey’s birthday is coming up; Melissa got him to articulate a list of desired videos (video = present on Joey’s planet.)

So the other night, a healthy, happy Joey was musing about “Soon there will be presents” and then decided to offer a bit of theater expressing his desire for their arrival.  He went to the front door and knocked from the inside, a perfect tap tap tap simulating the arrival of a package via UPS or FedEx.

The knock awakened the aging dog and set her to barking up a storm.

This in turn rubbed Melissa’s and my last nerves raw and we broke all of the rules about calmly explaining things to a person with autism.  We went into full “Knock it off” mode.

This made Joey laugh – he finds anger amusing to a point and them absorbs and gives it back .  So he started knocking again and the dog started barking again and and and and and and and…

Here’s a video about knocking. I think the only pipe I’ll be hitting is the one with the crack in it.

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.

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.

The Aftermath of Disasters

Melissa is feeling beat up today.

I was invited out last night and she stayed in with Joey.  Disaster struck twice.

First, a dinosaur attacked.

Our 22-year old son with autism took a fancy to this on his internet surfing, and played it over and over at high volume.

This is the guy who can’t help with chores or muster the fine motor skill to sign a thank you note without hand over hand help. But he can find, play and replay videos on the internet. And adjust the volume. Mainly up.

After the dinosaur attack, there was a tragedy at sea,

Yes, it was a concert for the ages as Barney was just an opening act for Celine. Vegas can’t top this. Jurassic World and Titanic as a double feature? And thanks to Joey’s computer skills Melissa got a few hours of both in Dolby high def.

Needless to say, Melissa was worn out by the time I got home. And today she’s had a nasty headache. I had the day off and we had plans to go out but the Monday night mayhem scrubbed all that.

Caregivers are happy when those in our care find simple things to enjoy. But as we say in our book,

It is a short step from “Thank God I’ve found something he likes,” to “Please, God, make him stop bugging me about that.”