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."

Saturday, September 17, 2011

Walk Loudly

And still carry a big stick.

Lately we've taken to calling the R.A. "Teddy" as in Teddy Roosevelt because he's become very taken with walking around carrying a very large stick.  It's actually not a stick per se.  Originally it was a leash of sorts for one of my daughter's stuffed animals. (Being more stick-like than leash-like makes it easier to pretend the animal is walking on the leash.)

The stick had long been abandoned by my daughter when the R.A. stumbled  across it and quickly became enamoured of it.  I don't know if it plays into his General Patton aspirations but it's his latest "thing."  It's not unusual for people to become attached to things - a blanket, a stuffed animal, a misspelled grade 8 school basketball jersey, one's children (unless you're Ivan the Terrible - then all bets are off.)  It's not unusual for people on the spectrum to become attached to things that a neural-typical person might find odd - a train, a book, the number 8, or a red and white long and wobbly stick.  As a child, my attachment was to a stuffed animal that we determined to be a crocodile although it was shaped like a frog but had teeth.  None of us is really in any position to judge other's attachments.  (Don't look so superior.  You know you've got your own outlandish attachments.  I know of someone who collects Jello memorabilia.  What's that about?)

The R.A. likes to parade around the house clutching the stick, brandishing it with a flourish, like a very tiny Captain Blood.  Often he is caterwalling at the same time.  Either he's using the stick to emphasize a remark ("So when I say leave the yaw yee posh formation on the floor, I mean leave the yaw yee posh formation on the floor!") or threatening us ("Your day is coming, incompetant dunderheads!")  I can't tell.

Since the appearance of the stick, the family has had to make some adjustments.  We've learned to do a lot of bobbing and weaving to avoid being smacked by the stick.  Our reflexes are also improving as we've been doing a lot of stick blocking as it wobbles in our direction.  We've also gotten pretty good at leaping and lunging at the stick to keep it from making contact with our ceiling fan or anything breakable.  Of course we do all of this while simultaneously engaging in our daily activities such as eating, reading, talking on the phone, typing on the computer, watching television, bathing.  No, we don't take the stick away.  Honestly, it never occurred to any of us to do so.  We just accepted it as the R.A.'s newest "thing."

When a person has a disability, she adjusts to how she interacts with the world.  I know this because my mother has had serious vision problems her whole life.  She adjusts to the situation. (Well, as long as she can see the situation.  If not it usually means she has tripped and fallen over the situation.  But that's a whole "nother" blog - The Partially Blind Astronaut's Daughter.)  What's interesting about autism (or more like frustrating) is that the autistic person doesn't adjust to the world.  It's the rest of the world that has to adjust, especially the family.  My family is constantly in a state of adjustment.  It's now so organic that we make the adjustments without really thinking about it.  So when the R.A. appears during meal time brandishing the "Stick of Infamy" we just duck and chew.  For my family it's like we're trying to live a life despite the challenges of the autism.  Or at least get through dinner.

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