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.

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:

Mysteries of Memory

I found this picture while picking up after Joey.

Axtell

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.

Soon there will be presents

Let’s start with some vocabulary :

Perseveration

Thanks, PsychCentral

The idea from which our son is unable to switch is that there’s a particular video he desires as a Christmas present.  Or birthday present.  Doesn’t really matter, he’s just trying to establish that the next time that presents are exchanged, he wants this video.

So he’s nagging Melissa in particular, and the repetition of words that has ceased to be socially relevant or appropriate is,

Soon there will be presents.

Oh, there are other phrases he works into his pitch.  But when he says the above, you know the pitch is coming and that’s all you are going to hear for several minutes.  Or hours.  Or the weekend.  Or long stretches of time between August and December.

He also brings in gestures such as running his fingers, clean or not, through Melissa’s hair  or, literally, bending her ear to make sure she’s attentive to the socially irrelevant and inappropriate words.

I made the mistake of leaving a gift for our friends’ kid unguarded.  Joey assumed it was our cave-in to Soon there will be presents and began to unwrap it.  Fortunately he recognized it as not the right shape and weight to be a video cassette so he abandoned the effort without destroying the wrap job.

But it’s the thought that counts or something.

No Language or Sex; Lotsa Violence

Living with a person with autism can mean very little verbal interaction and a reduction in intimate time and space. It can also open a can of whoop-a** on ya.

When our son Joey was a little guy, he would have violent meltdowns. These could come from frustration because we didn’t understand something he tried to get across to us or anxiety because he couldn’t understand something we tried to communicate to him.

One incident left Melissa with a scratched cornea. I was flogged with a rope dog toy. Another time it took both of us plus our older son to pin Joey to the floor until the fury subsided. He would kick, bite, punch, throw objects – we couldn’t ignore a single appendage if we valued our safety.

I caught this very good video on Twitter. It’s less than four minutes long and worth a viewing. It’s specific to caregivers of people with Alzheimer’s, but describes a hazard faced by many kinds of caregivers:

You have to fight your own nature as well as the person beating on you. You have to stay calm and gentle while under assault. It is a physical ordeal and emotionally exhausting.

It is freaky to face a physical attack by someone you love and are struggling to care for.  The emotional wounds can linger longer and more painfully than the bodily bumps and bruises.

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.

 

Mental Exhaustion, or…?

I’m coming off one of those sleep deprived nights that go with having a person with special needs in the house.  I’m sure I’ve shared a zillion such incidents so the details are irrelevant.

Care giving involves emergencies in the middle of the night or when one is already depleted by all of life’s other stuff.  And even without the emergencies, there’s the steady drip of energy into routines of care (aka chores) that turn life into a blur.

I find myself having to check my PC or phone to remember which day of the week I’m on.  Is that advancing age or the fog of extended care giving?

Inventories for depression include a question like “Have you been unable to do things you used to enjoy?”  Hell yes, but is that depression or exhaustion?  Who wants to take a 20 mile bike ride along the river on 3 hours of fitful sleep?

The upside is, you don’t need the expense and (depending upon where you live) legal issues of sitting around stoned. Care giving provides its own kind of burnt bliss. Pink Floyd provides some good mood music,

Comfortably Numb, am I? Or am I actually dealing with

OK, that’s all for now. Got to keep the loonies on the path.