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:

 

 

Mother’s Day on the Horizon

Here are a couple of good piece by MOMS of kids (little and grown) with autism:

At The Mighty, check out 15 Things I Hear as the Parent of an Autistic Child – And My Responses.

Mothers of all children with special needs and autistic children likely hear a whole lot of different things throughout their journeys, so to make appropriate social conduct a bit clearer and more defined, below is a list of what I believe is better not to say…

donna reedAnd give a read to Shaunta Grimes’ Coffelicious blog, This is what it looks like to be a Gen-X mom with an Indigo Child who isn’t a child anymore.  (Strong language & content).

It’s so tempting to try to browbeat him into sleeping more. (I have no idea why it would work with a 23-year-old man when it didn’t work for a three-year-old baby.) I also find myself wanting to monitor his computer time, restrict him from drinking and unprotected sex, and refuse to let him get his own apartment because I can’t see how he’ll be able to manage paying his own bills.

It’s easy to forget that having autism doesn’t make him less of an adult with his own mind and the God-given right to make his own decisions. And mistakes.

Me?  I’ll try to get Joey to help me honor Melissa on Mother’s Day, all the while dealing with the reality that he expects any holiday to mean presents for him.

Hanging out alone together

We are getting our handful of gorgeous spring days here in Sioux Falls.  Soon humid heat will take over and we will wilt while the corn and weeds leap up to embrace the sun.

Last night we were guests at an outdoor wedding rehearsal.  Our son with autism enjoyed being outside in the pleasant weather.  The site had a swing set and that’s a gross motor activity that calms him.

More than that, the couple’s extended family includes a gaggle of boys around whom Joey is comfortable, in no small part because they are so friendly toward him but also understand that his reactions to them will be…uh…different.

20170505_195157I took this picture last night.  It looks like Joey is isolated in stereotypical autism.

But notice the slight turn of his head.  From his place of shady comfort on the soft grass, he’s enjoying a social moment.  He’s connected to the boys who are throwing and kicking various balls around the field to his right.

Although working to establish social connection and interaction with people with autism is vital, so is a gentle touch that finds their comfort zone.  For Joey, that’s often just on the edge of things.  He smiled on the edge of the dance floor at his brother’s wedding reception, for example.  He didn’t need to run away, but he didn’t need to dive in either.

His comfort last night – and the fact that others accepted his comfort zone – gave Joey social pleasure on his terms and allowed mom and dad to visit with friends and enjoy social time on ours.

Besides, they had a taco bar with nachos.  I mean, that’s a winner, whether or not you’re neurotypical.

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.

The overlooked caregivers

Today is “Siblings’ Day” when one should appreciate brothers and sisters.

The brothers and sisters of a child with special needs are too easily overlooked.  It is easy to appreciate how they “help” with care giving but overlook their unique needs.

Here’s a short video that’s a helpful reminder.

 

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.

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.

…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.

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.

We’ll leave the light off for ya

People with autism connect with the world through repetitive behaviors.  I mean, we all do, right?  None of us want to live in a town where red light means stop on Tuesday and go on Wednesday.  I think.

But people with autism take repetition to the nth degree.  One of the the behaviors that led to our son Joey’s diagnosis was a daily pattern of running around the house, clockwise, pausing to touch certain objects in sequence along the way.  That’s a game a neurotypical kid might create, of course, but then a typical kid would lose interest and create a different game without having to be coaxed out of it by a therapeutic intervention.

20170121_085218One of Joey’s current repetitive behaviors is turning off our house’s outside lights.  It’s almost like he’s adopted a daily chore, which would be nice, except we can’t figure out the timing.  It’s irregular and sometimes inconvenient.  Why he’s even aware of those lights is a mystery, since they don’t glow into the window or anything.  But he’s taken to turning them off, sometimes while waiting for his morning bus, sometimes when he gets up to get a drink at night, sometimes in a cantankerous little gesture just after we’ve turned them on.

Joey’s repetitive behaviors create repetitive behaviors in his caregivers.  Now my wife and I have to check the light switch every time we go by at night.

Today is Saturday, and the whole family engages in a big repetitive behavior based on Joey’s imposed pattern of glazed doughnut with chocolate milk.  It means I have to get up earlier than I want, including on bitter winter days; the dog expects a car ride to the market; Melissa has to go on seizure watch while I’m out, during which the cat nags her for a brushing.  This pattern, almost down to a minute by minute precision, has been in place for years.  All because Joey is happy with his doughnut and “off” – possibly to the point of a seizure – for the rest of the day if it doesn’t show up.

When I got back from the market, I knew that Joey was awake.  How?  Not because there was a light on in his bedroom window, but because the lights in the driveway were off.

These repetitive behaviors can infest the care giving family in a couple of ways.  Obviously, they can become a grind.  Or, they can become cute and sentimental, preserving the feeling of caring for a child long past childhood.  This can create a void when the person with autism moves out, as Joey might at any time.

Then you have husband, wife, cat and dog all staring at one another wondering what to do.  Care giving can create some patterns of relationship, but it can also make those a facade ready to collapse when the person receiving care leaves the pattern.

Care giving is a consuming, sacrificial act of love.  But we have to be careful not to dramatize it or sentimentalize it, because it can take over too much of reality like some kind of idol.

One of the ways I resist that is to have my own @^%*#@$ repetitive patterns that aren’t tied to care giving.  I read during my lunch hour at work, for example.  This week, I got something worth sharing.  Hope it helps where you are:

We fill in the center with something or someone and ask it to be the fulfillment of all our desires.  We attempt to quench our thirst for the infinite with something finite.  When this happens, we terribly distort whatever it is we are asking to be our god.  No one, and nothing, can bear that responsibility and so we begin to squeeze the life out of our loves.  And we die, too, because we need the nourishment only God can give.  A lesser god means a lesser self.  (John Welch, O. Carm., The Carmelite Way)