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."

Sunday, January 20, 2013

Sleep When You're Vaporized

My husband and I are in constant conditioning training.  Much of the time we are the last to know that we are in the midst of a drill (of course with all the accompanying caterwauling you'd swear the R.A. is bellowing, "This is not a drill, people!)  Which I don't know why we are always so surprised considering that we know that the R.A. believes us to be worthless and weak and in desperate need of "aliening up."  Last night we had a surprise/guerrilla training exercise.  At 1:45 AM (EST) the R.A. initiated coughing.  My husband had recently come home from work and heard the early warning sounds signaling that a boofing was imminent.  He raced up the stairs and pulled the R.A. from his room, depositing him in front of the bathroom toilet.  Although simultaneously coughing and gagging, the R.A. still managed to be viciously indignant at being manhandled.  In between his wretches he yowled in annoyance at his father: "YOWL! YOWL! YOWL! Vomit, vomit.  YOWL! Gag! YOWL! Vomit, vomit, vomit. YOWL! (Furious hand gestures) YOWL! CATERWAUL! Vomit. (Furious hand gestures) YOWL! Vomit, vomit."  Translation: How dare you treat me with such insouciance, you low born life form!  Don't you know who I am?! Vomit, vomit, vomit."

My husband has, as that great urban philosopher T-Bone says "mad skillz."  He swooped in, grabbed the R.A., swiftly raced to the bathroom and adeptly situated him in front of the toilet.  Not one drop of vomit was spilled except in the toilet.  It was like a "Vomitless Revolution."  I don't think there are Navy SEAL operations that run as smoothly.  In fact, I don't think a Navy SEAL would have done it any better.

At this point I stumbled out of bed and took over bathing the R.A. Over the years my husband and I have become a vomit clean up machine.  We're extremely efficient.  I handle body vomit recon. and he deals with environmental vomit recon. We're so good that it doesn't matter where the throw up event has happened - in house or in the community.  We just jump into action.  I don't mean to brag but we sometimes make it look effortless.  Don't be jealous.  It's a combination of endless drills and innate talent.  

Once installed in the shower the R.A.'s mood greatly improved.  He was energized and happily jumped up and down in the water's spray, crowing happily.  Warily we watched the R.A. partake in his version of water aerobics.  The more time passed the higher his toe jumps and more animated his arm motions.  Crap.  It was like he got in a refreshing nap and was now ready to tackle the night (or day or whatever the hell it is at 2 AM.)  My husband and I exchanged sorrowful looks.  What good is it being a vomit ninja when you're not allowed to sleep?

As we got the R.A. dressed in clean backwards/footie-less footie pajamas, he vigorously bounced on his toes, flapped for Britain and caterwauled loudly.  It was like trying to dress an overgrown chihuahua on crack.  I swear as he jounced he was also taunting us, "How them ninja vomit skillz now, beeyatches?!  Your punk asses are mine tonight!  Oh, yeah!"  And then to bring home the point he finger flicked aggressively in our faces as if to say, "Take that, sneetches!"

Once a middle of the night vomit event has occurred, the R.A. refuses to return to his own room instead preferring our room.  I believe it's because of our room's many attractive accouterments -  easy access to taller furniture and shelving for greater climbing challenges, a television with On Demand, a lap top that plays DVDs should one want a program not offered On Demand, a bigger bed that has higher bounce potential, not to mention that said bed is perfect for when he finally exhausts himself and crashes.  The room also comes with two dimwitted yet easily intimidated servants.  What more could any alien astronaut ask for?

Usually chips, juice, french fries, carrots, ketchup, and lollipops.

Following protocol, we depart for our bedroom.  I suggest not turning on the TV or computer, thinking that maybe if we keep things quiet it won't stimulate the R.A. and maybe he will just settle down and go to sleep.

So there the three of us are in the bed, in our usual positions, the R.A. sprawled in the middle of the bed and my husband and I clinging to the edges - in complete darkness.  Yes, it was extremely relaxing, like being at a spa. A spa in Hell.  In the bad section of Hell.  Seeing as there was no TV the R.A. found other ways to occupy his time.  First he began by taking all of the pillows and snarling at us if we foolishly attempted to take one.  Next the R.A. spent a while kneading my husband's back and leg hair with his toes. Then the R.A. decided that the actual pillows weren't doing it for him and tried to use me as a pillow.  The R.A. is quite small in stature.  However, at least half of his size and weight are contained in his head.  Let's just say when it comes to the R.A.'s head, he's "big boned."  One of my friends, every once in a while will survey the R.A., look at me and sigh, "You must be soooo glad you had a C-section."  Unfortunately my body was determined as being not as comfortable as an actual pillow and this the R.A. viewed as my being defiant and he spent a good amount of time chinning my hands and yowling at me.

The R.A. did pace himself, not rushing through any of the above activities.  He was also careful to take frequent breaks to wiggle, hand flap, finger flick, and caterwaul.

True to form, the R.A. picked an excellent night for a sleepless conditioning drill.  The following morning (or later in the morning?) I was supposed to conduct a storytime for special needs families.  I was somewhat comforted by the fact that it was for other special needs families so there  was a pretty good chance that those other parents would also be sleep deprived. If I blundered my way through the activities they probably wouldn't notice.  I toyed with the idea of instead of doing an actual storytime we would just let the kids tear the meeting room apart while the adults napped. Although believing it an excellent idea I abandoned it because my boss can be a bit uptight about destruction of library property.

During the drill, my husband and I did manage to doze a bit, frequently being abruptly woken by a ferocious yowl or aggressive chinning - the R.A.'s quaint way of saying, "Get your lazy asses up, losers!"  Unluckily for the R.A. the sleep deprivation exercises are not toughening us up but rather teaching us to sleep under any conditions.  My husband claims he can now sleep while standing upright. I am not that advanced, yet.

Shortly after 4 AM the drill concluded, signaled by the R.A.'s tucking himself in and his gentle snores.  He devotes much of himself to our training and it really takes a lot out of him.  No doubt it is a thankless and hopeless task.

Me, I can't wait for the invasion and the imminent vaporization.  I'm really looking forward to the rest.

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