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."

Thursday, May 31, 2012

Some (Dis)Enchanted Evening

As I mentioned previously, the R.A. does not sleep in a bed.  He did, a veerryy long time ago, have a bed.  It was quite a nice bed - a fire truck as a matter of fact.  The problem was that the R.A. did not use the bed for its intended purpose - sleeping.  Instead the R.A. preferred to use the bed to propel himself onto other furniture in the room or just to launch himself into the air.  He never slept in the bed or even on the bed. No, the R.A. elected to sleep next to the bed on the floor.  Occasionally he would inadvertently partially sleep on the bed.  This occurred after particularly rigorous launch workouts when the R.A., finally felled by exhaustion, would simply collapse, with half of his body hanging off the bed -sometimes his top half, sometimes his bottom half.

When it became apparent that the R.A. would only use the bed as a launching pad, we removed the bed from his room and just left the mattress.  Although the mattress on its own was ineffective as a catapulting device, the R.A. quickly discovered a practical use for it - a ramp.  The R.A. would prop the mattress against his half wall and run up the mattress and then over his wall.  He was undeterred when we extended the height of the wall, using his pillows, blankets, and other toys to prop up the mattress and then vault himself over the wall. This is why I often lament, "I wish he would use his powers for good!"

Ultimately we ended up removing the mattress leaving the R.A. to sleep on a mound of pillows.  Think a sultan's bedchamber (with Thomas the Tank Engine sheets.)

In retrospect I understand that the R.A.'s sentiments regarding the bed had to do with his disdain for the earthling weakness for sleep.  He would be damned if he adopted that slovenly habit.

Over the weekend we purchased a new bed for my daughter.  My husband's master plan was to give her old mattress to the R.A. and re-introduce him to earthling sleep morays. Honestly, I think my husband was more excited about that than the new bed.

I did not share my husband's enthusiasm for the "Great Mattress Project of 2012."  I've been around the block enough times with the R.A. to know that these projects seldom go as smoothly as we originally envision.  And when I say seldom I mean never.

The day the new bed was delivered, I got home from work and ran up to my daughter's room to check it out.  My daughter and I spent several minutes admiring it and discussing its many stellar qualities.  She even went so far as to fetch a ruler and measured its height as compared to my bed.  Yes, it is nonstop fun at my house.  It's like New England's version of Vegas.

Suitably impressed I then trotted to the R.A.'s room.  My husband had done a wonderful job "dressing up" the mattress, adorning it with Thomas bed linens and blankets and adding just the right amount of pillows.  Nate Berkus would have been impressed.

Despite its cozy appeal, I wasn't holding my breath.  My biggest fear was that the R.A. would deem the entire thing grossly offensive and punish us.  Therefore, that afternoon and early evening I purposefully avoided the R.A.'s bedroom and kept him away from it too.

Eventually, however, bedtime could not be postponed any longer.  Once I had the R.A. suited up in his regulation backwards, feet cut off, footy pajamas, we entered his bed chamber.

The R.A.'s dad had earlier in the day exposed him to the mattress and supposedly he tolerated it.  Tonight, as the R.A. entered his room, he did so walking sideways, crab-like so that his back was toward the mattress.  He wore an uncomfortable smile and his expression and body language said, "If I don't let on that I see the mattress, it will be as if it doesn't exist.  The Mommy Lady is extremely dim and will be easily fooled into thinking there is no mattress."

Next to the mattress was a pile of pillows.  The R.A. dove on top of the pillows and then arranged them so that some were covering him up.  He smiled and sighed contentedly as if saying, "Whew! Dodged that bullet!  You can go now."

My first instinct (a base survival instinct) was to kiss the R.A. and bid him a fair goodnight.  But I knew how much time my husband spent getting the mattress all dolled up so I sucked it up and knew I had to give it a shot.

In a forced cheerful voice I attempted to coax the R.A. onto the mattress.  He just giggled at me and snuggled deeper into the mound of pillows.  I then picked him up and placed him on the mattress.  The R.A. then grabbed one of the pillows on the mattress and dove back onto the pillow pile on the floor.  Relieved that despite our temerity of introducing something new without his consent, the R.A. was still pleasant, I tucked him in on his pillow pile and left the room.

Vengeance is best served at 2:15 AM.  That is the time that the R.A. woke up coughing, gagging, and vomiting.  My husband and I cleaned up the vomit and tossed the R.A. into the shower.  We pulled the R.A. out of the shower and as I was getting him dressed in clean PJ's he proceeded to cough, gag, and vomit again.  Again we cleaned up the room and deposited the R.A. back into the shower.  We ended up participating in this little exercise two more times.  By the time the final shower was taken, an hour had passed.  Now the R.A. was bright eyed and bushy tailed and in no mood to sleep, on the floor, on the mattress, or on a bed.  My husband and I spent the remainder of the wee hours hosting the R.A. in our bed.  The R.A. insisted on watching a "Jakers" DVD on his father's lap top while reclining in most of our bed, my husband and I squashed together in one corner.  Initially the R.A. denied his father admittance to the bed.  I think this is because the R.A. understood the whole mattress debacle was his father's big idea.  I was merely a harrowingly stupid accessory to the crime.

It was challenging enough to try to sleep while clutching the side of the bed but the R.A. knew that my husband and I would still manage to catch a few winks due to our gifts of extreme laziness.  To make sure we were tormented accordingly he then incorporated vigorous bed jumping into our night of punishment.  Between the constant motion, noise, and the force of the R.A. landing on us, we were guaranteed a rotten night's sleep.

The R.A. was in top form because despite his exacting punishment regime, he never fell asleep.  When I stumbled out of bed at 6:15 AM to engage in before work/school chores, he followed me down to the first floor where he barked his breakfast order at me.  Obviously the poor boy was famished.  He was a particularly engaging breakfast companion as he yowled angrily at me, probably something along the lines of, "And let that be a lesson to you!  Believe you me, there's more where that came from!"

The real kicker was that despite the fact that the R.A. himself got so little sleep he had a perfect behavior day at school - a rarity.  He must have gotten out all of his aggressions during the night and was too pooped to give any of his teachers a hard time. Don't tell anyone.  I'm afraid rationing sleep will be added to ABA protocols.

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