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.

 

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.

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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.