Toll Road

The costs of care giving pile up.  Along with financial obligation, amplified by a disabled person’s reduced or eliminated income, there are emotional and physical tolls to pay.

Yesterday I preached in a town about 100 miles to our north.  The morning was chilly, but during a very filling lunch after the service, the sun came out and began to warm things up.

Driving back down the interstate the big meal, the sun through the windshield and my perpetual lack of deep sleep got the best of me.  I fell asleep at the wheel.

Thank God I had a friend along on this trip (one I usually make on my own).  I heard him saying Whoa there and realized his hand was on the wheel with mine, keeping me from veering off the road.  We pulled over and he drove the rest of the way.

Melissa tried to let me nap but this, that and the other thing kept me awake.  I have a few days off coming, but my mind is occupied with catching up on stuff I let pile up over the last few tired weeks.  So sleep remains elusive and, when it comes, is fitful.

Then Joey had a minute long seizure.  Melissa got to him first, and his thrashing was so violent that it was all she could do to secure his head and get him on his side to keep his airway open.

So more physical and emotional tolls piled on.  Melissa’s strain in grappling with the seizure.  The rush of adrenaline as we reacted to it, followed by the big crash once things settled down.  The frustration with our inability to decode Joey’s language – he kept saying Bath with mom, which usually means here’s my preference for help with my routines , but this time was an effort to put into words his sense of an oncoming seizure.

Objectively, Melissa and I would agree that our lives are going pretty dang well right now.  But the daily nickel and dime tolls of care giving add up.img_20140806_150524_781

We share tales and encouragement for other family caregivers in our new book, available at


Maybe Next Year

Hi, friends.  For your weekend reading pleasure, here’s a chapter from our book, Raising a Child With Autism.  OK, the book doesn’t have the cool pictures.  Ain’t blogging grand?  Have a great weekend, and hope this chapter is good news to you.


XII. Maybe Next Year

Growing up in L.A., I was a fan of the Los Angeles Angels when they were a brand new American League expansion team. This was before they built their own stadium down in Anaheim. When I was a kid, they played in the stadium named for the “real” team: the Dodgers. The Angels were so hapless that some of their advertising highlighted their visiting opponents: “Come out to see Mickey Mantle and the New York Yankees!”

Of course, they went on to win the World Series decades later. But in my childhood, they were a “maybe next year” team. Maybe next year they would win more games than they lost. Maybe next year they would climb up from the bottom of the standings.

We have a “maybe next year” tree by the street in front of our house. We needed a tree out there to block some of the summer sun that routinely fried our lawn. We also craved fall color, so when a landscaper showed us pictures of a maple called a “Fall Fiesta,” we said, “Wow, look at all those fiery leaves! Put one in right now!”

So he did. And all the budding leaves fell off and the tree went dormant. We looked at our bare little tree all winter, praying that dormant was something different from dead.

The tree budded in the spring. Of course, it hardly cast any shade, little thing that it was. The lawn still turned brown when summer came.

And the fall colors turned out to be less than a fiesta—some yellow, mostly brown and then all gone.

Maybe next year?

The next year was better. The tree budded in the spring and there was noticeable fresh growth on top. It grew taller. Its leaves seemed fuller. It didn’t shield the lawn from the sun, but it cast a respectable shadow where the dog liked to pee on hot days.

There were some deep red leaves in the mix for autumn.

Maybe something more next year?


Yes, the actual tree in the story as it looks today.

Each year adds. It grows taller, the trunk is stouter, and that tree actually shades the main part of the lawn except for a few days when the sun is impossibly high in the sky. And it totally lights up in an array of warm colors to tell us fall is here. Fiesta!

Digging Around

Like waiting on a plant to bloom, taking care of an autistic person requires patient hope. Your heart, and maybe your mind, will break if you are into precise timelines. “Next September our kid will achieve X” must be held loosely. “X” might happen in October, or November, or the following spring, or September two years out, or not for a very long time.

We agonized for years about our son’s inability to tell us when he was sick. He couldn’t say, “I have a headache.” And his dislike for sustained effort meant he wouldn’t cooperate with our “process of elimination” questions. He would say “Yes” to anything just to get rid of us.

“Does your head hurt?”


“Does your stomach hurt?”


“Do cats fly on tiny, little wings?”


Trying to teach him to point at what hurt wasn’t any better. He would wave his hand up and down his body, like Vanna White displaying the board on Wheel of Fortune.

But he had a recent breakthrough. He seemed a bit off, so Melissa asked him, “How do you feel?” Usually, he’ll just say “Fine” or “Happy” even if his face and tone say anything other than those qualities.

But this time, he responded to his mom with, “Do you have a stomachache?” Yes, it was a question when we wanted a statement—but it was his way of sharing precise information with us.

Like hopelessly loyal sports fans or amateur gardeners, caregivers have to keep telling themselves, “Maybe next year.” And in the next year, or tomorrow, or a few seconds from now, a once abandoned hope arrives as a surprise.


Blooming idiots like ourselves must learn and relearn “deferred gratification.”  We might want to stick a stalk in the ground and see a tree the next day, and we want to think that one or two sit downs with an exercise book will have our kid reading literature in time for kindergarten.

But when it comes to caring for someone with special needs, it is important to hold a goal patiently.  If it is a good goal (helpful and realistic to the person in our care, not a fantasy to please ourselves) it is worth holding onto in heart, mind and habits over many seasons.

Jesus’ follower Paul put it this way, “For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees?” (Romans 8:24)

Like travelers using the four cardinal directions on a map, people who follow Jesus find spiritual orientation from three cardinal virtues: “faith, hope and love.” (I Corinthians 13:13)

Hope keeps us looking to the horizon, to what’s next. We hope for what we do not see or have, but believe can be out there.

Hope allows us to act with purpose, believing that our efforts are worthwhile and taking us toward a good destination. It means long seasons of waiting, of doing the right stuff over and over even when a longed-for result isn’t coming into view.

When we come to terms with hope, we find that it isn’t really about a particular event, thing, or outcome, but about coming face to face with the one who is calling us forward.  It is about meeting up with Jesus and continuing the journey forward with him.  Paul seems to have been a blooming idiot of sorts, since he discovered this through much trial and error.

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” (Romans 8:28)20161021_173509

Hope this helps… [UPDATED]


Blogging’s been sparse here down the home stretch of distilling some of our insights into book form.  See?  I’m so worn out that I’m mixing metaphors.

Anyway, here it is, available for preorder at

UPDATE:  Some of you might be asking, “Hey, what happened to Blooming Idiots?  THIS IS THE SAME BOOK.  My editors had a late insight – a good one – that there could be a perception problem.  Can you imagine a Tweet something like “I just read a #book about #autism called Blooming Idiots” ?  The implication would be that people with special needs are idiots – precisely the opposite of the book’s message. 

We tried some artsy titles, but they made it sound like a gardening manual.  So we went literal, just laid it on the line.  Wise move, which is why one has editors.

Also, some have asked about formats.  It will be available in paperback and in a Kindle version.  At the Amazon page, there should be a show all formats link.  If that doesn’t work, try clicking the link version of author name (Timothy Fountain).  That should show the choices.

We pray that it will reach and help family caregivers, especially those just stepping onto the ground we’ve been walking these last couple of decades.

And hopefully we’ll be back to blogging and sharing more thoughts.  Thank you all for being part of this.


Breaking the Stigma of Mental Illness – Yom Kippur 5777

Compelling thoughts and a prayer at the end that includes caregivers. Your compassion for those in your care is precious.


There is a town in Belgium called Geel (Hyale), with a remarkable 700 year old custom of compassion.

Its origin lies in a legend about a seventh century Irish princess named Dymphna.  When Dymphna’s mother died, her father went mad, insisting on marrying her.  Dymphna fled to the continent.  When he caught up to her in Geel, he beheaded her.  Dymphna was sainted, and pilgrims began visiting the site of her martyrdom in search of miraculous cures, especially for mental illness.

A church was built in 1349, and later, an annex to house the visitors.  Eventually, the townspeople began to welcome the mentally ill relatives of pilgrims into their homes as “boarders.”  For the townspeople, it was an act of charity to open up their homes.  “Boarders” stay with their hosts for long periods of time, as many as fifty, or even 80 years, becoming part of the family.


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90s Pop Seizure Disorder

Right now we are having work done on our house.  Good stuff we’ve wanted to do, and so far we are having good luck with the contractors coming by day when our son with autism is out of the house at his community program.

This evening Melissa and I were having a glass of wine.  Joey was on his computer down the hall.  It was peaceful even with a bit of disarray from the projects.

All of a sudden Joey let out a throaty bellow.  I jumped up and ran down the hall, expecting to find him on the floor from a seizure.

But he was on the office swivel chair, smiling.  Apparently, the sound was just him trying to imitate this:

He saw my agitated face and, as is his norm, started chuckling. I huffed and puffed and stammered something like “Oh you like Michael Bolton.”

I went back and tried to resume wine inhalation. But Joey came out into the front room all smiles to say,

“You like Michael Golden.”

Yeah, Golden, Bolton, whatev.

Caregivers resonate more with these lyrics (forgive the @#$^@!!^ AARP commercial if it pops up):

In the night I hear you speak
Turn around, you’re in my sleep
Feel your hands inside my soul
You’re holding on and you won’t let go
I’ve tried running but there’s no escape
Can’t bend them, and I just can’t break these….
Steel bars, wrapped all around me
I’ve been your prisoner since the day you found me
I’m bound forever, till the end of time
Steel bars wrapped around this heart of mine

Cleanup on Aisle 5: Tantrum or Meltdown?

Meltdowns and tantrums batter our senses in similar ways.  Plenty of ugly noise and maybe even a slap, kick, bite, flying object or other physical violation of the caregiver.  And there’s the wonderful emotional component, putting the parent/caregiver in a spotlight for a disapproving world.  “Why, in my day I’d a’ solved it with a good slap on the bottom.”

Supermarkets are prime territory for meltdowns and tantrums, but also help explain some of the differences between the two.

The aisles are filled with tasty stuff packaged colorfully and decorated with a kid’s cartoon, sport or celebrity gods.  So a tantrum is a rational effort to have the caregiver purchase some of the crap  products for home consumption or maybe even for the desirous kid to snack on while leaving crumbs all over the store.

A tantrum is an exercise in the use of power to achieve a goal.  Nasty as it is, a tantrum is a typical part of child development, a teachable moment that feels like an hour, a chance to help a child grow into more civilized problem solving and relationship skills.

At the same time, the store is a bombardment on the senses of a person with autism or other special needs.  Glaring lights and colors, quick temperature changes by coolers or hot food counters, a multitude of voices including disembodied overhead announcements, people and cargo in motion every which way, and, what the heck, maybe somebody’s kid having a tantrum.  The stress level for a person with special needs can go off the charts.

In that state of agitation, a person with autism will try to communicate.  Maybe he or she wants you to know that this environment is too much.  Or maybe there’s the typical desire for you to buy a particular item or not buy something the person finds icky.  And people with special needs have favorite characters on packaging, too.

Maybe the caregiver is peppering the person with questions, “Should we get this?  Or this? Or this?”  It adds to the overload.

A meltdown is not purposeful like a tantrum.  It is frustration at being unable to process all of the input and/or not having one’s output understood.  Yes, it looks like a tantrum, but it is not guided by a purposeful thought.  It is every system in the person’s body going haywire.


Please stay to the right, dammit.

Let’s try this parable, also from the supermarket.  Here’s the humble shopping cart.

In Southern California, where my wife and I grew up, you have a culture just as tied to automobiles as were the Mongols to horses.

So in the market, you push this cart according to the rules of the road.  You stay to the right.  You keep the cart in front of you, pushing it just past the product you want so you can reach up and get it while leaving the other half of the aisle open to all the cart traffic going the other way.  The emphasis is on keeping things moving.

What one does with a cart has a logic to it.  Violations of that logic are considered rude.

Now we live in South Dakota, a culture of farms, open space and small towns.  People hop off their tractor and leave it in the field to break for lunch.  You can park your car wherever and even in the cities you don’t have much trouble picking a space.

In the market, it’s the same.  You see an item on the right side of the aisle, and you just leave your cart on the left side while you fetch said item.  In other words, between your cart and your butt, you’re blocking the entire aisle.

Except here, that is not rude.  What in Southern California would be a selfish violation of the rules of the road is, in South Dakota, an exercise in uncomplicated freedom.


Tantrums are ugly, noisy and possibly violent expressions of neurotypical social development.

Meltdowns are ugly, noisy and possibly violent expressions of neurological overload in people with special needs.

Hmm.  Guess that doesn’t clear it up as much as I thought.  Now I’m wondering if my road aisle rage when somebody’s cart and big butt blocks an aisle is my lack of social assimilation or just my claustrophobia kicking in.

Sometimes I think the whole world has autism.


On the Border

We had lots of friends over last night. Some familiar folks and some new ones, too.

Our son’s paratransit bus pulled up about an hour after company arrived, and Joey came up the walk way with a big smile on his face as he realized that company was here.

Although we had food ready to go, our friends graciously insisted on waiting for Joey (well, the grownups did allow for beer and wine while waiting) and their kids ran out onto the walkway to welcome him home. He ate with the group and then retreated to his room for some private video watching time.


Joey at a social event.  Creating border space.

Later, he came out of his room, again with a big smile across his face. He didn’t come sit in the group, but stood just outside the living room. He came in a couple of times, accepting the hand of one guest to help him down a step and going around to make brief eye contact with others.

He behaved similarly at his brother’s wedding reception a few years ago, standing at the edge of the dance floor, smiling, but not accepting numerous invitations to join the dancing.

Joey creates these border places that allow him to be part of social occasions. He doesn’t dive in and do all of the typical social stuff, nor does he completely withdraw except for temporary respite if things get too loud for him.

People on the autism spectrum are in part defined by what most of us would call impaired social behavior. But they’re not asocial. They are capable of creating social space that works with their sensory issues.

Our work is to watch for those comfortable border places that allow them to feel connection with others without trying to force expected interactions upon them. As an introvert, I can appreciate that.

Let ’em have their time on the border, I say.

Speaking of being on the border, we have a release date for Blooming Idiots: Amateurs Raising Plants – And A Kid With Autism. It will be October 31st, so right on time for your holiday stylings. Consider getting a copy for a family caregiver you know… we’ll have more details in the near future.

Chicken = Nothing

Yesterday Melissa (Mom) attended Joey (son with autism)’s annual planning meeting at his community agency.

The staff and she encountered several of the ways he keeps people from making him work, which is to say, asking him to do anything that his mind does not want to engage at the moment.

As it was Friday, Melissa asked him an easy question, What are you having for breakfast tomorrow?  Joey knows full well that Tim (dad) always gets him a Saturday morning donut.  He knows when it’s Friday and he anticipates this.  So he said,


That is his blow-off answer to any food question.

Joey, what did you have for lunch today?


What treats do you want in your Christmas stocking?


Parents of neurotypical teens will recognize this:

What did you do at school today?


Joey uses chicken for breakfast the way others’ teens use nothing happened at school.

Not all people with autism play this game, but for Joey it is a persistent way of enforcing personal boundaries.  Or of creating an ad campaign that made him a bunch of money that he’s not sharing with us:

Mysteries of Memory

I found this picture while picking up after Joey.


Sometimes I’ll catch him sitting with it, smiling and even seeming to converse with it.

That’s him in the green shirt in the front row.  It is a middle school class from the middle 2000s, so around ten years ago.

He keeps it like a treasure.  He speaks the names of people in it.

Joey has this amazing long term memory.  He can recognize places we visited in his childhood.  He holds onto names and details quite well.

This is perplexing, given that he can’t attend to present tasks without constant redirection or give simple answers to questions about what he did in the last few hours.  (Of course maybe the latter is just him being stubborn.)

I’m reminded again of a prominent psychiatrist at Texas Medical Center who said, “We know more about outer space that we do about the brain.”  That’s part of the aggravation and wonder of autism: the mind is wired mysteriously.  It takes a person to most of the same destinations as a neurotypical mind, but by some very different paths.

Care givers are blooming idiots, learning those paths as we grow with those in our care.

Seizure Disorders

Last night I was out tinkering with some uncooperative lights by our front door.  A neighbor came up and invited me to come over to a gathering around a wood fire in the driveway next door – a group was there and they wanted to “get to know the mysterious people in the gray house” (that’s us).

It was a pleasant gathering and a good chance to explain my hermit-like existence.  Care giving means keeping a close watch.  Our adult son with autism had seizures set in when he entered his teens, and there’s just no leaving him alone in the house.

The neighbor who invited me over perked up – turns out his adult son, who is not autistic, just started having seizures.  Opened quite a door toward getting to know about one another’s families, that.  He and his wife worry that they can’t keep constant tabs on their son, who is athletic and likes to take swims in lakes by himself, among other behaviors that wrack parents’ nerves.

I know a clergyman in another state who called when the same problem intruded on their family.  Their son, despite seizures, graduated from medical school and got married.

Apart from the neurological damage that can accompany seizures, the danger of falls with head and neck injuries creates stressful isolation and hyper-vigilance for care givers.  Trying to stay in proximity to another person, “just in case,” warps both social and emotional life.  Melissa and I couldn’t sit around the neighbors’ fire together – one of us had to stay in the house to watch Joey while the other socialized.

Seizures leave a lasting mark on care givers, too.  Here’s a bit from our upcoming book (really, we’re just waiting on the cover art… release is imminent), Blooming Idiots.

One of the worst stings our family suffered was Joey’s teenage onset of grand mal seizures.  The first one came with no warning and we thought we’d watched him die right in front of us. It is a sickening memory.

Although Joey’s seizures are less frequent since he got past puberty’s brain chemical chaos, one will sneak up on him now and then. The big danger is head or neck injury from a fall.

Any loud noise will make us scramble to respond. I noticed my anxiety rising at a gym, when the really big lifters dropped their massive weights at the end of a set. The kaboom of metal plates hitting the floor sounded too much like a Joey seizure in progress.

One night at home, Melissa heard a crash and rushed out of our bedroom to help Joey, only to find it wasn’t Joey down. It was me. I’d gone to help Joey dry off after his bath and slipped on water he’d splashed out of the tub.

I was fine, but Joey’s reaction wasn’t what one might hope. He was laughing. I mean cracking up. To him, it was like a pratfall in a comedy. He thought I was doing something to entertain him. It was up to Melissa to say the right things like, “Are you OK?”

If you have family or friends who are caring for a person with a seizure disorder, it means a great deal to give them a break.  Learn to recognize seizure onset so you won’t panic, and find out about the proper first aid.  Giving a care giver some down time won’t totally purge the stress we carry, but it reduces it, at least for awhile.

More than that, it can save a life.