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."

Friday, July 29, 2011

Did I Mention...

that when my daughter and I were on vacation in Disney we saw a spectrum family?  We shared a shuttle bus with them. There were three children.  The older girl was about eleven years old, non-verbal and very "stimmy" - physically and vocally.  She also must have been a "bolter" because her dad had her in a harness.  (Listen, don't judge the harness.  The minute you can keep track of a wily and Houdini-like ASD kid while negotiating throngs of Disney-crazed Brazilian teenagers, you can judge.)  There was also a boy about five years old that I would bet money was an "Aspie" (Asperger's Syndrome to you ASD neophytes).  I base this on the fact that he kept repeating something he read on the "Pirates of the Caribbean" poster that was in the shuttle - "Release the pirate in you."  "Release the pirate in you."  "Release the pirate in you." (I did appreciate that he mixed it up, putting the stress on different words each time he said the sentence.)  The youngest was a four year old girl who seemed to be representing the neurotypicals (Shout out, ya'll! - and you can because we won't be freaked out by the loud noise.)  Anyway, they made me feel on the one hand homesick for the R.A. and yet on the other gave me my ASD fix.  I was extremely impressed by the parents' guts to bring their ASD kids to Disney as it is a sensory land mine.  Good for them, I thought.  And then because I am fundamentally a stinker I thought:
Obviously they drove down to Disney because there's no way they could manage an airport and plane ride.

So much for an inspirational anecdote.  But then you knew that if you wanted inspiration to visit somebody's else's blog.  Real talk, people.  Here's some "real talk" inspiration:


When life gives you lemons
piss, bit#*, and moan about it until somebody finally gets
so sick and tired of it, he snatches them from you and
snaps, "All right, already!  I'll make you some
da*#ed lemonade!  Just shut it!"
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