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, June 27, 2011

Sit, Roll Over, Play Dead

Autism is hard.  It is hard for the person who has it.  But it's also hard for the family because despite the challenges of the autism, there is still a whole family that needs to function.  Over time, without a conscious effort, you start adapting the family's life to the autism.  You do all sorts of things that are seen as odd to "civilians" without giving it a second thought.  The seemingly odd becomes your family's "normal."  Everyone in the family just goes along with it - like McDonald's runs before going to a restaurant to eat, making sure to know where the McDonald's is before going to an unfamiliar place, double-checking the white paper napkins in your car's console.  It's like you're trying to live a life despite the autism.  Or as best as it will allow.

As I said, all this "autism adaptive" behavior, happens without the family realizing it.  What really has occurred is that the R.A. has gradually and methodically trained us well:

I will only eat McDonald's french fries.  I know we are in the middle of the White Mountains but that's your problem, not mine.  Figure it out!  And by the way, get this Burger King slop out of my sight!

I know there are 48 other stores in the mall but we will only ever visit two. I'm feeling magnanimous - the Food Court doesn't count.

I realize it's 4 o'clock in the morning but I have a hankering for Pringles NOW!  So get your lazy, sleep drunk as* out of your bed and hustle down to the kitchen and get me some - unbroken.  And get me one of my juice boxes while you're at it.  And don't try to pass off one of those substandard "Mott's Tots"  boxes o' crap.  I will be able to tell.

In many ways the R.A. has broken us.  We don't even protest or attempt to disagree.  We just do as the R.A. demands.  It's easier that way.  I think we are also so sleep deprived that there isn't much left of our already deficient mental capacities.  I now understand why sleep deprivation is used by cults to control their members.  I do all sorts of crazy sh*# because the R.A. instructs me to.

This evening the R.A. has been working for hours on intricate Dum Dum floor models.  The models stretch from the living out to the hall.  The areas the R.A. has chosen for his models are high traffic areas but we know better than to attempt to move them or the R.A.  Instead, we are all contorting our bodies and tiptoeing in between and around the lollies - even if we're carrying things.  My brother, the world traveler, is currently home until his next international adventure.  But even he adapts without asking questions.  Tonight my brother came in from a frisbee game, wove his way through the models, complimented his nephew on his designs, and hit the shower.  It's just the way things are.  Pretty much all the time.  We are extremely tractable.

Good humans, now go get me some more ketchup before I ask the Kitchen God to vaporize your entire planet.

No comments:

Post a Comment