I’m no Mary, he sure ain’t no Jesus…

When Joey was a toddler and we were at camp, the thought flooded my head like perfectly heated steam, while the sun poured into my skin like soft lotion. Some distant, bitter stranger, more like a stick-figure with a disproportionate index finger pointing at me was saying “That is blasphemy, you fool and you will writhe in the pit of Godless Hell.” My conscience made no sense of that brittle, screeching thing.

My thought was that Joey was Jesus and I was Mary. Well, not really. It was more like it felt so perfect, that the love was so pure that it had to be the same love. I thought of my other two children. Did I love them less? I loved them as much, no second thought. Immaculate Conception? Did any reader who barely knows me remain in their chair at that thought? Lastly, Joey had never spoken but one word: “tickle,” and at the time I did not know he would not begin to speak until he was almost five years old. Nothing exceptional about either of us, to the outside world, rather unnoticeable unless misbehaving. 

Misbehaving? I shall not digress much but a doctor has mended a gash in my cornea after one of Joey’s meltdowns. As for me, it took a couple of exceedingly large women walking slowly, diagonally across a mall parking lot, no crosswalk, not looking, got an earful from me and yes, I was sober. To my husband’s chagrin, I was shotgun. 

Back to camp. Joey was 2 years old. He had been diagnosed with severe autism 2 months earlier. Out here in the open, running, clapping or flapping his hands in the fresh-cut grass, he had very few sensory issues. An “older” mother, I was 41.

Now I am almost 62, Joey is 24 and I am thinking perhaps God needed me to love him as deeply as Mary loved Jesus to get through the years of violence and injury he brought, mostly to me because I was physically the weakest, emotionally the most vulnerable, and although autistic, he was smart-enough to know it.

And if that was not enough there were the “outsiders:” every  wise-ass parent who saw a neuro-typical looking child like mine behaving badly and concluded it was my bad parenting, or the parent of another autistic child who had all the answers… I should not have immunized him as I did my other 2, I should have spent tens of thousands of dollars for some amazing camp run by people who looked like the people who used to hang at Haight-Ashbury which would “cure” him. Lastly, the 6-figure paid government employees who knew nothing about education but decided what kind of help my son and other children like him would not receive. Those meetings were tortuous hours.

I still feel the overpowering love that I can only guess Mary felt for Jesus, who was helpless to the world. Of course it is completely different. Of course it is not.


I’m a little teapot…

Melissa and I just bought  this whistling teapot:


Her social media comment says it all.

The autistic kid moves, the tea kettle whistles after 22 years

We’ve chronicled some of the sensory issues that bedeviled Joey and through him the whole family.  We had to banish whistling teapots from our home for 22 years because the sound distressed him to the point of meltdown.

Hey, it wasn’t all bad.  I mean, I had plenty of opportunities to avoid cleaning the house because the sound of a vacuum put him over the edge.

But the little blue teapot is another sign of our lives being liberated from the concessions, adaptations and drudgeries of care giving.

Hang in there, wherever you are on the care giving journey.  I’ve been slogging through the Biblical Prophet Ezekiel.  The first 39 chapters are a gloomy tale of people living in exile, familiar life erased.

Then one day life starts to come back together.

Silver Roses

An excerpt from our book showed up on our Publisher’s page today.  Hope it helps you get off of your own back.

One year, my wife and I planted roses all around our backyard. If we knew what we were doing, we would tell you that the flowers were called Lady Wilhelmina Sunburst Spectaculars or some such name. The reality is we went to the nursery and said things like, “Oh, let’s get some of those silver ones.”

Sure, we had red roses and yellow roses, but we were really excited by the bush that would give us silver roses. Our friends would stare and sputter, “Wow, silver roses. Never seen those.”

We planted the silver rose bush in a prominent angle of our fence line. It would be the eye-catching star of the backyard. We followed the nursery’s instructions about how deep to dig, how much to water, and whether it liked red or white wine with meals.

Our dog at the time was a burly malamute mix named Rocky. Evidently, he shared our interest in silver roses. We came home one afternoon to find Rocky lying on the grass, gnawing on the dug-up silver rose bush. After much arm-flapping and loud shouts of, “Oh no!” and “Bad dog!” we replanted the bush. Rocky was a good dog and left it alone. A few weeks later, we had our silver roses. That rose bush didn’t pout because a couple of beginning gardeners forgot to protect it from their dog. It just went back to making silver roses.

Our son Joey endured much because his caregivers were medical amateurs. We never spotted warning signs before a seizure caused him to bang his head on a TV stand, making him bleed profusely. He couldn’t tell us that a stomach bug had him dehydrated, and all we could do was watch the emergency room nurses give him an IV to re-inflate him like a tire.

But after incidents like those, he just took up wherever he left off. Our expertise—or lack thereof—didn’t bother him. He went back to his daily routines and loved us just the same. Joey is not what we made him or failed to make him. He’s always carried strengths of his own that we can admire as precious gifts from God.

We are part of a culture that takes responsibility for too much and assumes that our every word, deed, or thought will have a life-altering impact. Caregivers take that warped thinking to another level since we are in constant interaction with people who have special needs, and we assume that we will do them more harm by our perceived failures.

“For we are to God the pleasing aroma of Christ among those who are being saved and those who are perishing. To the one we are an aroma that brings death; to the other, an aroma that brings life. And who is equal to such a task?” (2 Corinthians 2:15-16 NIV).

We are who we are. Others are who they are, too. Our impact on them is dictated as much by their own inner workings as by our intention and skill.

So let’s drop fear of failure from the one hand and fantasy futures from the other and concentrate on taking hold of what is true in the relationships entrusted to us by God in the here and now. Those placed in our care have special needs we can meet, but they are unique people and not just extensions of our lives.

Silver roses are not our creations; they are the beautiful flowers of tough plants.

Twinkle twinkle

Family care giving is as full of constellations as our South Dakota night sky.

There are parents caring for kids, of course.  But also kids of all ages caring for parents.  And spouse for spouse, sibling for sibling, friend for friend, ex for ex, neighbor for neighbor…

After my recent musings about our son’s transition to a group home, I got this message from a friend in the region,

I just read your blog post about Joey’s transition and thought I’d share our journey, for perspective. The same time you were moving Joey in, we were moving my parents from the farm to assisted living. This transition took a turn, a few days in, when suddenly it became necessary to move my dad into memory care. So now they are in 2 separate facilities, both a fairly good fit for each of their needs, but they are separated for the first time in 57 years. When Dad resists, it’s especially hard on Mom who put so much effort into keeping him in the home he loved. Sadly, and fortunately, less resistance from him gives Mom respite but means he’s less engaged and more confused. He’s letting go of his connection to his home and eventually to the people he has loved, as must happen. It seems to me that Joey struggling against his separation and transition is a sign of life and love. Having found a good, safe place for him, he is a pretty lucky guy to have more than one place where he is cared for and loved by people who have the stamina to provide what he needs. I still hope to have that coffee on one of my visits, but concerned relatives seem to fill my dance card these last few trips! Peace!

Our friend’s ability to see the good things in all of the trade offs is so important.  Every constellation of care will have these – some seemingly essential things lost but other wonders gained.  Those latter must be illuminated and gazed upon.  They are lamps of meaning and value against what can become, if not resisted, dark and empty feelings of futility and despair.

So twinkle on, whatever your care giving constellation.

Do all things without murmuring and arguing, so that you may be blameless and innocent, children of God without blemish in the midst of a crooked and perverse generation, in which you shine like stars in the world. It is by your holding fast to the word of life that I can boast on the day of Christ that I did not run in vain or labour in vain.  (Philippians 2:14-16)

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…







…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:


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.