So what is it like having a child with autism?

So, what is it like having a child with autism?

I get this question a lot and actually like it when people ask. Unless a person has significant contact with someone on the spectrum he/she doesn't really understand what an autism driven world is about. Saying that, it isn't always easy to convey what having a child with autism is like. After much consideration, this is what I've come up with -

For me, having a child with autism is like living with an alien from another planet. I call him the "reluctant astronaut (R.A.)" because he really didn't want to come to earth, had absolutely no interest in this space mission. As a result, he didn't pay much attention at the briefings prior to the mission so doesn't know anything about Planet Earth - nothing about language, customs, or Earthling niceties in general. In fact, he is so disinterested in Earth that even though he was sent here, he has absolutely no desire to assimilate into Earth society. Meaning he still doesn't give a rat's ass about Earth mores.

That's also how I "explain" things he does that are pretty much unfathomable to me. For example - for a certain time period he liked to sit in the toilet. No, not on the toilet but in the toilet. I reasoned that on the home planet the toilet is a jacuzzi. Although eventually we managed to break him of this habit, the jacuzzi explanation popped again during potty training when the R.A. demonstrated not only an aversion to the toilet but would have all out nuttys when placed on one. He was probably thinking, "Poop in the jacuzzi? What is wrong with you people? Miscreants!" That's what he would say if he could speak English or any Earthing dialect.

For a time I was also convinced that not only was he a reluctant astronaut but was actually an alien cat that somehow ended up in a human body. It does make sense -

Cat

Has to everything his way

Reluctant Astronaut

Ditto

Cat

Don't touch me!

Reluctant Astronaut

Ditto

Cat

Doesn't speak human language

Reluctant Astronaut

Ditto

Cat

Doesn't wear clothes

Reluctant Astronaut

Ditto (Well, would if he had his way)

Of course I don't really believe my son to be a Reluctant Astronaut.

But sometimes it sure makes sense!

Disclaimer: Although I sometimes describe things about life with my R.A. in a humorous way, please understand that I am not laughing at him. He is my son and I love him very very much. I come from a family that had its share of challenges and I learned from a young age that laughter is powerful. A situation cannot completely hurt you if you are able to find humor and laugh at some parts of it. So that's what I do. And I don't use humor solely with the R.A. My daughter was born with a heart condition that required immediate surgery. (No, I don't make good babies. They come out broken.) She was whisked away by ambulance to the hospital in Boston. It was all unexpected and traumatic. A nice young intern came to speak with my husband and me and was re-assuring us that nothing we had done caused the baby's condition. The stress and sorrow were overwhelming. When the nice young intern concluded I turned to my husband and said, "See, I told you it wasn't from all that smack I did during my pregnancy." The intern froze and then let out this huge belly laugh. Was I appropriate? Probably not. But I had to do something to relieve the stress. Astronaut life is stressful so find the laughter where you can.
And as G.K. Chesterton said, "Humor can get through the keyhole when seriousness is still hammering at the door."

Monday, May 30, 2011

The Unofficial Beginning of Summer or an Aborted Mission

For the past several years one of our friends has held a cookout on Memorial Day weekend.  As you can imagine, for us, something as simple as a cookout really isn't.  It takes careful strategy and it doesn't matter how many times we've done something as we are always dealing with that unpredictable variable - the R.A.  I think us going anywhere is sort of like Normandy but with more screaming and bloodshed.
Cookout morning found us getting ready, as usual, hours before the actual event. As we bustled about, my husband remarked, "At least we know there will be plenty of ketchup there."  I think he was looking at it as one less thing to worry about..

The cookout actually occurs after a casual softball game.  Some cookout guests play in the softball game while the rest us take our offspring to an adjacent playground.  Luckily the R.A. was familiar with the playground and it also had ample playground equipment including several swings.  According to the R.A. this playground gets a 5 ketchup bottle approval rating (out of 5!)

Initially the R.A. partook of his favorite playground activity, the swings.  But what really caught his attention was the sandbox.  Much to our surprise the R.A. used the sandbox in an appropriate way.  Although always harboring a sandbox interest, in the past the R.A. manifested this by running over to a random child in the sandbox, jumping up and down and gesturing wildly at said child who was predictably whigged out by this as would be the child's accompanying adult.  As the R.A. easily outruns us we would stagger up to the sandbox gasping, "Autism!  He has autism!  He's just saying hello!"  Usually the other family just looked confused and would quickly hustle their kid out of the sandbox.  My level of crabbiness, usually in direct ratio of how fast and far I had to run to get to the R.A., would dictate how I handled this.  If not too far or too fast, an awkward, "Ok, we'll see you on the swings in a bit."  If we'd already had some anxiety producing moments before hitting the sandbox, I would yell at the family's retreating backs, "Don't worry!  Autism isn't contagious, you know!"  Why, yes, we are the hit of any playground we visit.

After the playground we headed to our friend's backyard for the cookout.  As the R.A. does not frequent  this place very often, he needed time to acclimate himself to the new environment.  No doubt he was also sending back communications to the home planet to get reports on the layout.  This meant we had to set up camp far removed from the rest of guests.  The R.A. would have preferred we then set up camp at one of the houses across the street. Instead we settled on the other guests on one side of the yard while we took over the other side.  The first part of the re-acclimation procedure involves the R.A. not acknowledging anyone.  Those who foolishly attempt any interaction are snarled at.  We strongly encourge people not to approach the R.A. during this stage as we can't predict or control any biting or throwing of objects.

The second phase of re-acclimation involves the R.A. making outrageous, diva-like food demands of his dimwitted parents.  This means that although we packed all and only the foods the R.A. will eat, he wants none of them.  For some reason they now offend him and our incompetence disgusts him.  Incomprehensible orders are barked at us.  The R.A.'s patience wears even thinner.  So far we are really enjoying ourselves.

After about two and half hours the R.A. now feels comfortable enough to leave his corner of the yard. This may be because he has received a report of the parameters and therefore feels more comfortable to venture forth to "mingle" with the other guests.  I'm not sure if "mingle" is the right word as what the R.A. really does is move forth in straight, unbroken paths that do not take into account chairs, tables, plates of food, beverages, coolers, or people.  This type of "mingling" doesn't involve any type of true interaction with the other guests beyond his attempts to take something from someone else that has caught the R.A.'s fancy including chairs which may or may not be occupied.  Of course interaction is greatly increased if the guest does not want to share (give) the item to the R.A.  At this point the R.A. becomes quite spirited in the exchange and at times at his end it does sound like a profanity-laced tirade.  I'm fairly certain that many Earth mothers have been soundly insulted during these rants and it's not such a bad thing that nobody understands him.

During the cookout the R.A. did commandeer another child's stroller.  He climbed into it, tossed the child's doll aside, and barked, "Push!" to my husband who was standing nearby.  Well trained, my husband did indeed push the R.A. around the yard.  It called to mind Julius Caesar being hauled around in his litter.  The R.A. had my husband shuttle him from one end of the yard to the other.  At each end the R.A. would hop out, grab a sip of his juice and nibble a chip, hop back in and demanded, "Push!"  Obediently my husband pushed him to the other end and so it went.  My husband remarked that he felt a lot like a rickshaw driver.

What never ceases to amaze me are the instances when the R.A. suddenly notices something that is obvious to everyone else.  At the cookout it was the massive staircase that led from an outside deck down to the yard.  The R.A. looked the steps up and down, growing more excited.  The expression on his face seemed to say, "When did that guy get these?  Are they new?  Are they just for the cookout?  They are very high and there are a lot of them.  I like them!"

Now I will be the first to admit that I rarely know what is going on in the R.A.'s mind.  But when I saw his little eyes light up when he took in the staircase even I knew his goal - total staircase domination.

The R.A. has a great fondness for stairs (and pretty much anything he can add the words "death defying" to.)  He likes to slide on stairs, roll on stairs, engage in some sort of alien stair yoga.  The R.A. loves stairs' railings and banisters as they contribute to that death defying penchant of his.  At our house he removed the railings from under the banister as they impeded his ability to swing around the banister.

The stairs at our friend's house were gold standard as far as the R.A. was concerned.  So many stairs, so many railings.  And that banister!  He was giddy like it was the equivalent of alien Christmas.

But the R.A. is no dope and knows there is a long and painful history of pesky adult earthlings limiting his access to desirable stairs.  He took in the backyard and quickly assessed that unfortunately the majority of cookout guests fell into that dreaded "pesky adult earthling" category.  The R.A. prides himself on his superior alien intelligence.  He figured he would wait until we were all too distracted to notice him and then he would make his move.

I watched him hang around the bottom step, looking very casual like, "Hey, what's up? I'm not doing anything, just hanging out.  Oh, hey, is that a step?  Oh, yeah. It is.  I'll just hang here by the step."  Occasionally he'd glance in my direction.  To his disappointment I was not becoming distracted.  Sometimes he'd put a foot on the bottom step, glance at the adults around him to see if they noticed him.  We did so he'd quickly withdraw his foot.

It was during that activity that our friend's dog trotted over the R.A.  The R.A. looked startled and took a few steps back and then recovered his composure and took a few steps toward the dog.  Then both the R.A. and the dog froze.  They stood perfectly still gazing into each other's eyes.  I swear to God it was some sort of mind-meld communication going on.  Then both of them stuck out their tongues and started wiggling them around.  I swear this is true.  Like everything in this blog it's too out there to make up.  Then I think the dog said something shocking or offensive as the R.A. took a couple of steps back and then raised his arm, flicking his wrist as if to say, "Enough!"  The dog was determined to have his say and the R.A. was adamant that the dog be quiet.  The R.A. kept waving his arms and barking at the dog.  Finally the dog barked back and trotted away.  I'm guessing the dog is also an alien operative and almost blew the aliens' plan of world domination.  It appeared to be a close call for the R.A. and must have shaken him as he abandoned his mission to explore the stairs.  He spent the remainder of the cookout in the corner pacing back and forth.  I'm no expert on the alien military but I would bet money that later on that night the dog was heartily chewed out by his superiors.

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