Male Pattern Autism

I haven’t had hair in so long that I can’t remember if one feels a difference between one comb and another.  Oh, sure, brushes – some are stiff, some are soft.  But combs?

20161108_064758Here are the two combs that reside in our son’s bathroom.

One is big and pink and has been around since Titanic hit the iceberg.  The other is your standard little black pocket comb that just showed up one day.  (Note: if you feed strays, they come back).

Our son insists on the pink one.  If I bring out the black one, he pushes my hand away and points at the pink one.

They both have the familiar wide-spaced teeth at one end and narrow spacing at the other.  Can they possibly create different feels on his head?  That’s important, since sensory issues are massive for people with autism.

Or is it just the familiarity of the item and daily habit?  The pink one is old and established.  The black one is some new thing that obnoxious caregivers or occupational therapists or beings like that might try to inflict on him.

Which is why incumbents get reelected so often.  (Ponder that on election day.  Are we just one big autistic country or what?)

How we go over the edge.

I’m pasting this from a closed caregiver support site, so I’ve edited out stuff that could identify the source.  (Caution: coarse imagery and language)

It is the kind of story that is at once funny and tragic.  You have to laugh, but you have to recognize that this is the steady drip (or poof) of stuff that wears caregivers down and makes us nuts.  It’s always one more &#&#^ thing.

I got home from work, my honey is in bed not feeling well, and I decide I will take a relaxing hot bath. I deserve a long soak. I get a cup of tea, turn on my audiobook, get all settled in, and my dog passes gas. I don’t mean a little fart, I mean green noxious fumes fill my bathroom. The kind of dog fart that leaves a taste in your mouth. I know it’s not personal, but come on, all I wanted was 30 minutes of peace. Now my honey is yelling “did the dog $@#+ in the house?” Loud enough for the neighbors to hear, and I’m aggravated. Now my supposed “best friend” is laying on the couch like he deserves a dog treat. All I wanted was a damn bath.

 

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.

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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?

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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?”

“Yes.”

“Does your stomach hurt?”

“Yes.”

“Do cats fly on tiny, little wings?”

“Yes.”

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.

Fertilizer

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

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.

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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.

See?

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.

 

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,

Chicken.

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

Joey, what did you have for lunch today?

Chicken.

What treats do you want in your Christmas stocking?

Chicken.

Parents of neurotypical teens will recognize this:

What did you do at school today?

Nothing.

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:

A tale of two something somethings

Here’s our front walkway.  Yes, the same one where I go to photograph weeds to illustrate the futile feelings and fleeting successes of care giving.

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Yes, it’s neat.  That’s because we came into some money and paid to have it cleaned up.  Care giving is about recognizing your limits and accepting (or buying, or begging for) help.  If I’d started the job, it would still be half done, probably resulting in a picture for another post about how care giving never, ever reaches a point of completion and satisfaction.

Meanwhile, two of the new plants summarize the modern world of therapies for people with autism.

The plants are just a few feet apart, getting the same sunlight, same water, same same.

Yet one is coming along…

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…the other, not so much…

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Those of us caring for people with autism learn that the ultimate silver bullet therapy that turned one kid “normal” simply bounces off of another kid.  Helping a person with autism engage and enjoy life requires intense attention to that person’s unique aptitudes and limitations.

And guessing.  Lots of guessing.

And grace/luck/fate.

And even when you hire a pro to do the planting, one bush grows and the other withers.

 

It ends in a vowel and has a show tune

I mean, all of the medications in the commercials end in a vowel, have a fast talking voice over telling you all of the awful and maybe even fatal side effects, and happy images of people re-perkied (is that a word?) by the drug.

You might have watched THIS ONE.

It ends in a vowel, can impair your breathing and make you die, and it causes people to sing show tunes – what’s perkier than that?

Well dang it, I want MY vowel-ending, catastrophic side effect bringin’, make-me-wanna sing and dance pill, too.

Heart failure? Come on, what about the chronic condition suffered by caregivers – just plain ol’ failure failure? Why does it have to be a bodily function or organ that fails in order to get a magic pill?

Why can’t our abiding sense that we aren’t doing enough or doing it right merit some medication?

I brought this up on Facebook and friends were good enough to provide some musical therapy, both old school…

and somewhat less old school…

And where are our claw foot tubs while I’m at it?  Oh, wait, that one doesn’t end in a vowel.

Come on, pharmaceutics people, we’re waiting out here.

Wasn’t gonna do Mother’s Day but…

Mom mug

Story of This Life on Facebook

…then I laughed at this.

It’s evocative of the simplification of goals and rewards that is necessary to caregiver survival.

But after I got a laugh at that, I shed a tear over this article from a Church of England news source,

CHILDREN in care are being denied the mental-health treatment they need as they are shuttled between foster homes, (Members of Parliament) have warned.

Almost half of the children and young people in care have a diagnosable mental-health disorder, compared with about one in ten children who are not in care, a report from the House of Commons Education Select Committee says.

But, despite their needs, MPs found that vulnerable children are being turned away by mental-health services because they do not have a stable home, or they do not meet the high thresholds set to qualify for treatment.

Let me paraphrase:  A nation decides that public spending on other stuff can be maintained by dumping medical and clinical therapeutic level responsibilities on everyday people.

That goes to the heart of the family care giving dilemma, be it birth family, foster care, adoptive parents or whatever household type responds to the need.

So a salute to all the caregiving moms out there, while you carry on as doctors, nurses, therapists, teachers, pharmacists, and all of the other roles you receive, minus the public affirmation, titles, training and affirmation, of course.

Not to discount care giving dads (I am one, after all).  And nobody tells me I’m pretty, so I get it.

But it’s Mother’s Day, so let’s salute the ladies who don’t get to take Sunday off, probably won’t get a restaurant outing and might, at best, get that pajama day as a bit of respite.  Going into labor was just the start of labor that goes on and on and on.

But yes, the kids are alive.

Thank you.

 

Grow it? I can’t even spell it.

Taking care of a loved one with special needs means a steep learning curve.  You have to start picking up ideas and applications from medicine, social science, natural science, education, the supermarket… and plenty of them are rattled off in acronyms like IEP or ASD.  (I’m not providing handy links for those so if you don’t know what they are you can feel a bit o’ the bother that they create.)

HyacinthI found myself pondering this on Easter Sunday over dinner at a friend’s house.  Our hosts had this lovely centerpiece on the table.  Our first question was “Did you buy it or grow it yourselves?”  We were impressed that it was their own work.  Placing bulbs in water means “drown” in our planting experience.

Our next question (thanks, Captain Obvious) was, “What is it?”  I mean, we knew it was a plant.  We could even be so bold as to tell you it was a flowering plant.  But a name other than bulbs in water with lavenderish flowers seemed worth knowing.

“It’s a grape hyacinth” was the reply.  I won’t tell you how many times I had to type hia… hyas… hyacen… whatever to get away without a red mark under it.

Raising a kid with autism is filled with such experiences of ignorance, guessing, hearing about, trying, failing and starting over. There’s a good reflection at the Not Alone website , where the parents of a kid with special needs talk about behavior management:

“Then, there are the times something is happening in the very moment when we must make on the spot decisions that might help (or hinder) a current situation. We come to learn how to do this because of times we should have and didn’t!”

I’ll leave you with an inspirational, easy to remember, practical affirmation for your care giving pleasure.  Say it several times a day.

Here

You

Are

Crazed

Incompetent

Nonplussed

Totally

Helpless

But if you can’t spell that, try this instead.