Flashing before my eyes

Not my life, but my son’s life.  That’s what flashing before my eyes.

Today we have the meeting to set up his move to a group home.  All of the staff will be there, both the folks from his day program and from the house where he will live.

It’s a positive thing, of course, something for which we’ve (my wife and I) waited for a long time.

I can’t speak for her feelings, and I can only guess at our son’s, so I’ll shift to first person here.

I realize that my role in my son’s life is not over, but much of what I can do and shape is.  I’ve formed what I can in his life, second guessed myself to the point of agony, been critiqued and judged plenty from without, as well as encouraged and supported at precious points along the way.

I can look back on…

 

JOEY Yucaipa

 

…who Joey was…

 

 

Daves mom and joe

 

 

…who he’s become…

 

 

 

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…and ponder who he’ll be.

 

 

 

 

Something of me travels with him, of course.  And I pray that it is whatever is true, whatever is honourable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable (Philippians 4:8).  God knows and every day reminds me that there’s plenty of me that needs to be ignored and forgotten, and I can only pray that little of that drags along with Joey.

So a new leg of the journey commences, over territory we’ve not been and over which we’ll have ever diminishing control.  But ain’t that life.

An old priest I knew always included a warning in his message at the baptism of a child.  You (parents) know that you’re handing your child over to God now.  You’re no longer in charge of the outcomes.

As my life flashes before my eyes, and Joey’s plays across my imagination, I’ll trust that warning, and know that all of our lives are in the hands of the One who’s cared for us beyond all deserving.

 They will declare,  “The Lord is just!  He is my rock!  There is no evil in him!”  (Psalm 92:15, NLT)

Seasons change

Joey Tree picOur son brought home this autumn tree art from his day program.  We put it up to catch some natural light.

It is timely, as next month (still, for the moment, unless there’s another change, hopefully) is his move into a group home setting and our overdue commencement of empty nesting.

Changing seasons, each with their own simultaneous losses and beauties.  And mysteries for later revelation.

For everything there is a season, and a time for every matter under heaven: 
a time to be born, and a time to die;
a time to plant, and a time to pluck up what is planted; 
a time to kill, and a time to heal;
a time to break down, and a time to build up; 
a time to weep, and a time to laugh;
a time to mourn, and a time to dance; 
a time to throw away stones, and a time to gather stones together;
a time to embrace, and a time to refrain from embracing; 
a time to seek, and a time to lose;
a time to keep, and a time to throw away; 
a time to tear, and a time to sew;
a time to keep silence, and a time to speak; 
a time to love, and a time to hate;
a time for war, and a time for peace.

Ecclesiastes 3:1-8

 

Don’t Call Us

Our publisher’s site features a bit from our book today.

If you are grappling with frustration, especially if it’s born of perfectionism and the constant setbacks of care giving, you might find this little selection useful.

pathetic-7If our efforts to raise houseplants have been hit and miss, imagine some of the misadventures of raising a son with autism. Caregiving provides instant and constant experiences of inadequacy. Just as we’ve tried various strategies to keep the plants growing, we’ve sought out an array of therapies, settings, medications, specialists, diets and more to bring out the best in Joey’s life. And even with all that help, there are plenty of withered efforts to report.

It’s not all gloom and doom.  Some of the spiritual uplift (we hope) of the book comes in as well.

Hoping you have some good growth and blooming amid all your fails and weeds today.

Taking the show on the road

Sunday I preached at a church in Watertown, South Dakota.  That’s about 2 hours north of us.

Because our son with autism has had a string of sleepless (read active, boisterous) nights, and my wife has been up with him so I could sleep enough to work, I decided to chance some chaos and take Joey on the road with me so Melissa could sleep.

The risk is that Joey is an excellent traveler but a terrible arrive-er.  He’s fine on a long car ride or even a plane flight.  He loves looking out windows-in-motion.  But once at the destination, he starts saying, Go back to Joey’s house and doesn’t want to take part in the doings at the new location, at least while it’s strange to him.

On the way up to Watertown, I played music he likes.  He’s a big fan of The Guess Who.  He likes all kinds of music but he’s especially attentive to vocals, and Burton Cummings is no slouch.  I’ve had this Guess Who collection to play in the car for him for more than ten years.  It was important when we moved halfway across the country back in 2004.

20170723_100133Soooo… we arrive at church and Joey is calm but not social.  One person said, Joey, you can sit down wherever you want.  Which of course led to him sitting in the pastor’s seat, unwilling to budge.  The folks weren’t bothered, and they got me a matching chair.

Joey was calm throughout the service and endured listened to my sermon.  I sat next to him when other people offered readings or prayers, and he was responsive to my requests that he use indoor voice when others were speaking.

20170723_110957After the service, he wasn’t interested in visiting, even when pastry appeared.

<–This picture presents Joey’s version of what church-types call fellowship.

Again, he wasn’t agitated.  He just looked out onto the sunny day while the rest of us swilled coffee.

He was patient while I signed a copy of my book for a church member and visited with folks for a few minutes.

I was blessed by one person’s account of having worked at a state facility.  She pointed out the great changes in a very short span of years – it wasn’t long ago that such facilities were, by design, a way for families to keep members with special needs out of sight and out of mind.  Now, family caregivers are more active participants and advocates in the lives of their loved ones, even those who are in institutional settings.

I offered to take Joey to lunch, and listed some of his favorite foods to help him choose.  He resonated with quesadillas, so off to Guadalajara we drove.

20170723_114044Here’s Joey downing some tortilla chips while waiting for the quesadilla to come.  Glad he was in bright primary blue – he fit right into the restaurant’s decor.

We had a very nice lunch and drive back, with more Guess Who.

All in all, it was a sweet day.  Mom got some overdue and well deserved rest; dad and son had an enjoyable road trip.  The fear of chaos didn’t pan out and a few minor misadventures at church were more humorous than anxious.

In case you’re wondering, here’s Joey’s favorite Guess Who track,

Makin’ a list…

In my energetic youth I spent summers on a church camp staff.

We had a string of international participants who were building up camp director credentials.  One of them was from Switzerland, and his English was a work in progress.  One day I came into the camp office to hear him singing Santa Claus is Coming To Town, which was strange enough in summer time but on top of that he only had three words down and was singing the whole song with those.  C’mon, sing with me now,

Makin’ a list, makin’ a list, makin’ a list, makin’ a list…

Anyway we had company last night, and they’d made a list.  Some local folks who visit this blog messaged us about our son’s upcoming move into a group home.  As caregivers to more than one kid with special needs, this is ground they’ve covered and they reached out to offer help with our upcoming journey.

They’d taken the trouble to sit down and think through issues – some small and practical, others big stuff like money and emotions – and written a list so they wouldn’t forget to open up any of the subjects.

Actually, they had a couple of lists.  One was a record of residents’ share of house expenses so we could start wrapping our heads around the budget.  Stuff like trash pickup:

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The care giving community is rich in hard won wisdom.  It is worthwhile to write notes, keep records, journal, *cough blog cough* and/or just go out for coffee with other caregivers to share info and insight.  We’re all holding some great resources with which to help one another.

While I’m at it, a good spiritual habit is to list moments of grace – those unsought, unplanned moments of God’s favor.  Those unexpected Thank you, God interventions. Reviewing these can lift our spirits when the inevitable hard days show up,

And I said, “This is my fate; the Most High has turned his hand against me.”   But then I recall all you have done, O Lord; I remember your wonderful deeds of long ago.  (Psalm 77:10-11)

Last night’s visit goes on that list of God’s wonderful deeds.  Our guests shared that it was one of those God things that the first post up on their Facebook feed was our last blog about our son’s placement.  We received kind help and good company (and an addictive dessert) through that divine timing.

Allies: we have the Greatest in the heavens and so many He appoints upon the earth.  Too many to list, but how moving it would be to try.

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.

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.

Because it stinks…

air freshener

Image found here.

…caregivers have some capacity to freshen the stinkiness in others’ lives (and thereby in our own).

I think that our experiences can give us compassion for others’ struggles, even those not tied to care giving.

Here’s a positive review of our book, which notes that it can reach into situations that are not just like ours:

This is a most amazing book. The writing is phenomenal. Each chapter is divided into three parts, and each connected to “gardening or growing something”. This book is like a meditation and it does not just relate to raising a child with autism, it can apply to any difficulty, one might be going through. It even relates to just life itself. I have given this book to many people and all have loved it. The depth of this small book will amaze you.

I think we can fight off pity parties (OK, sometimes) by getting out of ourselves and helping others with different challenges.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.  For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.  (2 Corinthians 1:3-5)

 

Why did I write that book?

The truth is going to sound wacky, pompous and neurotic.

But I’ll lead with the truth and then list some more palatable stuff.

The truth is that I was in the park with our son, Joey, who lives with autism.  His slightly older, neurotypical (aka “normal” or at least NOT living with autism) brother had just driven away to start college.  I was praying, which was easy as it was a gorgeous day.  Obviously, my heart was full – memories of the kids over the years, hopes for what would come – so I was pouring that kind of stuff out to God.

Not audibly, mind you.  The other parents were not telling their kids, “Honey, come over here, away from that strange man.”

And just as surely as I was speaking to God, God spoke back, not in a audible voice (I’m only neurotic, not psychotic yet), but in a thought that flooded my mind and overflowed into my heart: You can write a book that helps other family caregivers.

I knew right away that I would be writing in the midst of care giving, not from past experience.  The book would never be The Five Essential Habits of Excellent Caregivers or something like that.  Rather,

  • I wrote it so that people confined by the demands of care giving would find companionship, at least in the stories I tell but hopefully beyond them in the divine, “patient gardener” who has helped me beyond what I could ask or imagine;
  • I wrote it so that stressed out people could laugh.  You have to find the humor, dark though it might be, to keep going as a caregiver.
  • I wrote it to process my own inner stuff.  As I said, I wrote it while care giving, not after.  And so it was a combination of meditation and therapy for me as much as for any potential reader.
  • I wrote it because I enjoy writing.  It is a gift I have to share and, frankly, I communicate better through writing than any other means.  Well, except yelling or crying and stuff like that.

Ortt book and icon

 

A long time friend shared this lovely pic of the book on a desk where he studies and prays.  I pray and hope that this little book serves God by helping family caregivers in the depths of their hearts.

 

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)