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.


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.

Death and that other stuff

So yesterday I did my taxes.  Well, I compiled all the stuff so a tax pro could do tax pro voodoo with it.

Screenshot 2018-02-09 03.54.10

Screen grab from my personal Facebook page.

Tax time gives me mixed feelings.

Yes, it’s a pain with our over-complicated system, built for those with the means to manipulate and a money vacuum stuck in the pockets of working people.  So I grumble.

But because all kinds of people all over the place pay taxes, there are various programs that make life gentler for our son with autism, and that ease our burdens as caregivers.  So I give thanks.

But more than all of this is the fact that I had to download and print a number of documents.  THIS is where I felt the impact of decades as a caregiver.

See, our son likes to grab pieces of paper, crumble them up and wave them in moments of self-stimulation.  As a result we used to keep all of our bills and documents secure, and we never, ever, ever left paper in the exposed printer feed tray.

So yesterday, after printing the 1095 and the mortgage interest thingy and such, I took all the paper out of the feed tray and hid it in a file cabinet.  Even though our son doesn’t live here anymore.  

Care giving.  A gift that keeps giving.  With all the certainty of death and… and… what was I talking about?

The Hamper of Love

Our son’s move to a group home is becoming like a wedding, with the exception that our family has someone moving out instead of in.

Like a wedding, the big plans all looked great on paper, but as the day draws near the details multiply like pick-your-favorite-thing-that-overpopulates.

Today was shopping for toiletries and some extra clothes for him to have at the new place.

20171104_160224Here’s the pile at midday.  I was proud of finding some sales and bargains.  I also rented a truck (no, it’s not in the laundry basket) to move furniture next week.

This morning was sweet.  His older brother and his wife were in town en route to a real wedding, and we all went out to breakfast.  Joey sat between them and smiled a lot.  Melissa remarked on how adult he’s become about social settings.  He doesn’t have to sit bookended by mom and dad.  He uses his fork and spoon like a pro (still don’t trust him with knives).  He interacts, in his own way, with those around him – when his orange juice arrived he wanted to use a straw, so he handed one to his sister in law to unwrap for him.  Yeah, he’s never gonna be cool with fine motor skills.

The weird thing is that as his moving day approaches, he’s increasingly fun to be with.  Is that just because we know the day is at hand and we’re relaxing?  Or, does HE know and is he angling for a sympathy extension at our place?

It’s on

Here’s the latest on our 23 year old son with autism’s transition to a group residence:

Yes, we have a pre-move team meeting next week and a move in date of November 1, per this message from the Case Manager,

Hello Team,

Joey and I would like to invite you to his ISP Pre-move meeting.

Date: Friday, September 22nd, 2017
Time: 3:30pm
Location: XXXXX Conference Room 3

The purpose of this meeting is to discuss supports Joey will need during his transition to the XXXXX house.

Melissa (mom) is working with Joey on feeling more comfortable with his new computer, which will move with him. He hates change so this was a heck of a time for his old desktop to go kaput.

His most recent antic was to unplug the new laptop, take it off the desk and plop it by its purchase box to say, “Send it back.”

Melissa coached him on being more at home with it, and they had a good discussion one recent morning before his bus arrived and a good hands on lesson last night.

I’m off today and we are planning to go to a sports bar that Joey likes because it is roomy and has great burgers.

Which gave Melissa leverage when he didn’t want his computer lesson. All she had to say was “Working for cheeseburgers.” He complied.

It’s on. The computer is on. The move is on.

Meanwhile the dog did some neurotic paw gnawing last night, opened a wound, and thus cancelled her scheduled bath and grooming.

That’s care giving. Deal with one issue, and the next one comes up from somewhere, somehow.

A dish best served with a smiley-face flower

The news is that agency staffing issues will delay our son with autism’s move to a group home (which seemed imminent about ten minutes ago) until mid-October.

Meanwhile, he’s descended upon us with increased nagging and bargaining for his Christmas list (yes, he starts early).  Mom and Dad are both on the ragged edge right now after bouts of illness and long work hours, so the din of his demands is a mental and emotional pummeling.

Yesterday we began to dish up a big ol’ plate of vengeance.  He came home from his day program with this very sweet guide to respectful communications:

20170824_173707THINK Before You Speak

T – is it True?

H – is it Helpful?

I – is it Important?

N – is it Necessary?

K – is it Kind?

BTW we stipulate that this is sound advice, not just for empathy-impaired people with autism but also for married couples, workplace relationships, social media, etc. etc. etc.  The world could be a much better place – Do not let any unwholesome talk come out of your mouths, but only what is helpful for building others up according to their needs, that it may benefit those who listen. (Ephesians 4:29, The New Testament)

And yes, that’s a rack of his daily meds at the bottom of the picture.  I’m so tired that I gave up on the photo cropping function and I don’t much care.

So we used this against him with great delight,

Joey:  Be a good boy there will be presents?

Hateful parents:  Joey, is it NECESSARY to talk about presents today?

Joey:  When it’s winter there will be presents.

Atrocious parents:  Joey, is it HELPFUL to talk about this before the snow comes?

Joey:  When the snow comes there will be presents.

Should-be-arrested-and-executed-parents:  Joey, is it KIND to keep talking about presents?

Hey, you find respite where you can get it.  That’s care giving.  And it makes even a smiley faced flower stink some days.


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,

Wasting away in virgin Margaritaville

Warning: this post contains a graphic crime scene photograph.

Just for fun, we introduced our son with autism to virgin Margaritas.  He liked the fruit-slush result from our blender, so we’ve had them several times and it’s kind of nice to share faux-cocktail time with him when he comes home at the end of a day.

We had them again last night, and were looking forward to finishing the bottled mix off this afternoon.  Melissa suggested we have ours with tortilla chips and guacamole before Joey got home, since he tends to bogart all the chips.

So I filled the blender with what ice we had left, then opened the ‘fridge to get the Margarita mix… (here comes the graphic crime scene photo)…


Mr. “I don’t have enough fine motor skill to hold a pencil and write” found the skill to unscrew the top of the bottle and drink all of the mix during the night.

We are retaliating by eating all of the tortilla chips without him.

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)