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, September 9, 2011

The Boob Toob

The R.A. has 5 television programs he enjoys:
1. Thomas the Tank Engine
2. Thomas the Tank Engine
3. Thomas the Tank Engine
4. The Backyardigans
5. Go Go Diego

Numbers 4 and 5 are DISTANT 4th and 5th place qualifiers.  I think he just throws them in to show that he's really a flexible, "roll with it" kind of guy, not bogged down by routine.  You know, like most people on the Autism spectrum.

As the R.A. is in constant motion, his television experience is also quite cardio-vascular.  The experience begins with him roughly thrusting or tossing the remote at you while demanding, "Thomash show.  Thomash show." (translation: Thomas show.  Thomas show.) or on those occasions when he's feeling daring and devil may care, "Backyahdibans.  Backyahdibans." (translation: Backyardigans.  Backyardigans.)  Unfortunately the R.A.'s never been a master of timing and his demand for his television program tends to coincide at inopportune times, like when you're making his sister's dinner or in the shower.  The R.A. does not want to hear any of your excuses like you're frying an egg or naked and soaking wet.  Just get it done, immediately if not sooner.

Once you finally get your act together and put the demanded show on, next commences a quick series of "suicides", to and fro in front of the television set.  Many times you're certain he's going to barrel into the TV but he always manages to stop fast, sometimes inches from the screen.  This may be his viewing experience's warm up.

Following the suicides are jumping jacks or rather the R.A.'s version - jumping up and down at a frantic pace while rapidly flapping his hands and yowling.  This is done directly in front of the television.

Then the R.A. becomes more reflective and ceases his frantic movements.  Now he stands less than an inch from the television and flicks at the screen with his fingers, "Plinck, plinck, plinck."  Occasionally he will cry out, maybe warning one of the characters of an upcoming catastrophe (usually involving the trains displeasing that Sir Topham Hatt - what a despot!  Those silly trains never learn they can never please that man.  They're always being set up for failure.  Just once I'd like to see an episode where Thomas snaps and runs over him - repeatedly, while screaming,  "Who's the useful engine now, old man?!!!")

Sometimes there can be variations, especially if he is watching his show while eating.  This afternoon, after the accepted television viewing procedure - suicides, jumping, flicking - he also spent some down time eating a banana (his third of the afternoon) while sitting in a chair and dangling his feet in his toy box.  I think he was also attempting to pick up some toys up with his toes.  Obviously.  I mean, what else does one do while eating a banana?

Although the R.A. would prefer only his television shows, he is magnanimous and will graciously allow us to occasionally view our own shows.  The other night the entire family, including the R.A., was in the living room watching television, a "non-R.A." program.  We'd been watching for a while when my mother remarked that the R.A. had us well trained.  It took a moment for me to figure out what she was talking about.  Even though it wasn't his television show, the R.A. was still adhering to his television viewing protocol.  This meant that 95% of the time he was in front of the TV, pretty much blocking it.  Instead of telling him to move, as a "normal" family would, we simply craned our necks and re-adjusted our own sitting positions in attempts to see around the R.A.  It had never occurred to us to move him.  Do you think after this realization we then moved him?

Are you mad?  That's not proper procedure.

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