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, July 9, 2012

I've Got the Music in Me (or Maybe On Me)

Lately, life has been even more challenging for the R.A.  As we've started his new food program, we've taken away one of his few pleasures in life - his beloved McD fries and nuggets.  It also has not been exactly a barrel of laughs for the rest of us either.  The R.A. spends much of his limited free time following us around demanding "Feh fies."  He's so desperate that he's even resorted to being nice about it, adopting a Precious Moments expression and asking in a soft voice, "Feh fies?  Feh fies?"  It's really rather pathetic, like something out of a special needs Oliver Twist.  It is sad to see the once mighty war monger so terribly reduced to borderline use of good manners.  It's akin to Genghis Khan saying, "Pardon me" after beheading someone just for the fun of it.  It's not natural.

Car trips, long or short, have also been affected.  Anytime we pass a McD the R.A. keens mightily and presses his hands and face against the window.  My husband says it reminds him of one of those Garfield car window ornaments but "yowlier."

The whole situation is extremely distressing for the R.A.  To relieve the stress he has devised a new "stim."  The R.A. has occasionally covered his ears with his hands when assaulted with displeasing noises or even more displeasing edicts from his caregivers.  He has now expanded this action to create what we delicately refer to as "ear farts."  The R.A. takes his hands that are covering his ears and presses them on and off his ears, rather quickly thus formulating the fart sounds.  For someone with such dainty ears he can really rock it.  Dopes that we are, it took us a while to catch on.  We just thought he was having a bit of a bout with gas.  Of course we finally cracked the case in the middle of lunch at a restaurant and proceeded to howl with laughter which only caused the poor R.A. to engage in what can only be described as the "speed metal" equivalent of ear farts.  I think his tag line for ear farts is, "When simply blocking out the noise isn't enough."

Perhaps the R.A. is on to something.  We should get him on those Sunday morning political round table programs.  After someone like the Speaker of the House (John Boehner) pontificates about why it's so darn important to give tax breaks to the uber wealthy, George Stephanopoulos can then turn and say, "Let's hear what the R.A. thinks of that."  And the R.A. will then ear fart for Britain or maybe in this case ear fart for America (I can totally see that on a bumper sticker - "I Ear Fart for America.")

We will have to be careful regarding when and where the R.A. engages in his ear fart symphonies.  For example, it would be quite embarrassing for him to let loose when Fr. Carlos announces a second collection at Mass.

As that great sage, Uncle Ben said to Peter Parker, "With great power comes great responsibility."

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