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, November 25, 2012

Here We Go Again (Yet Again)

As those who regularly read this blog know, the R.A. has his share of quirks/obsessive compulsive tendencies - coloring every square inch of a sheet of paper (both sides), lining up Thomas trains, a preference for McDonald's french fries, his eating habits in general.  He also has other compulsions that tend to be cyclical, randomly appearing and disappearing - for example taking every puzzle piece out of its frame and lining the pieces up on the floor or arranging Dum Dum's in distinct patterns on the floor. He will engage in certain behaviors or activities for weeks or even months.  Then abruptly, with seemingly no (earth) reason, will stop an activity.  But then, just as mysteriously, months later the R.A. will take it up again.  My theory is that these activities have to do with planning the imminent invasion of earth.

Currently the R.A. is back to his puzzle piece obsession.  There are four wooden puzzles involved - a number puzzle, an alphabet puzzle, a teddy bear puzzle, and a train puzzle.  All the pieces from all of these particular puzzles are involved.  It's never some of the train and all of the ABC or just all the number puzzle.  It's all or nothing and it's never nothing.  A new twist is that the pieces of the number puzzle must be removed at the bottom of the stairs and only in that location.  If we try to grab him as trots by us with the puzzle he will nimbly dodge us while yowling in frustration - "Don't you get it?  I can only set this model up in that area or the experiment won't work! I can't set it up in the middle of the living room as that will incorrectly increase the number of variations.  Oh my Kitchen God, these earthlings are so stupid!  It's a wonder they haven't annihilated themselves in bizarre washing machine accidents."

Once the pieces are removed and arranged he never touches them again.  We must step around the pieces, over the pieces, and sometimes (and painfully) on the pieces.  The R.A. tiptoes or toe jumps gracefully between the pieces, occasionally pausing to finger flick and yowl at random pieces. Perhaps he is reading patterns or working on some sort of brilliant alien equations - "Okay, so if there are roughly 7,054,543,253 people occupying this Kitchen God forsaken planet, and if my calculations are correct, we will need 17.6 zfbiks to vaporize half of them.  Give or take half a pzv."

When we ascertain that enough time has passed that we may request the R.A. pick up the pieces without him unleashing too much viciousness, we tell him it's time to clean up and to really bring the point home, we start to sing the clean up song.  He shrieks in indignation (either at having to break down his work or at our singing or a combination of both), chins himself and then usually the offending parent and thus begins the deconstruction of his models.  Every endeavor with the R.A. must also involve his unique imprimatur and puzzle clean up is included.  The R.A. doesn't just pop the pieces back into their designated spots in their frames.  Each piece is picked up, placed in its spot and then, with his right index finger, the piece is rubbed three times.  He does this for each piece he touches.  The rubbing procedure ensures clean up time takes at least double the time so we have to make sure we have allotted enough time in our own schedules for the enterprise.  Remember - nothing is ever simple with this kid.  That's probably part of his overall plan.

Another bit of R.A. whimsy involves his clothes or rather lack of clothes.  Back when the R.A. was about two years old he started removing his clothes during nap time and during the night.  Upon entering his room we would discover the R.A. in his natural state.  Taking the idea of "Nature Boy" to the extreme he would also wee and/or poo all over his room and all items in it (bed and toys.)  The R.A.  would greet us one of two ways -  crowing happily and jumping up and down in delight (often in a puddle of his own waste) or standing tip toe on his window sill growling, "Tuck! Tuck!" meaning "Stuck! Stuck!"  Although the R.A. could very agilely pull himself up onto the sill he could not figure out how to get down and would thus strand himself on the sill.  When this occurred he never called out for help instead waiting until the grown up finally appeared and then, irritated, demanded that the stupid adult pull him down.  Luckily the R.A. only has two windows in his room and even more fortunately one faces our street and the other is directly over our neighbor's driveway and faces right into their dining room.  Yes, they did have many memorable Sunday dinners as they often reported to me.  

Many issues were created by this "au natural" quirk.  My husband and I were very worried about the R.A.'s penchant to hang out on window sills.  Although we were distressed by the idea of the R.A. falling out the window, having been well acquainted with the R.A. and his talent for naughty, we were more concerned about him climbing out the window and on to the roof.  Because let's face it, there was a better chance of a naked roof stroll than a fall.  After much thought and consulting experts (carpenters, the fire department, circus performers) we decided to Plexiglas over the windows and sills, thereby preventing the R.A. sill access.

We only Plexiglassed windows in the R.A.'s room figuring when he got stranded on sills in other rooms in the house there would be an adult immediately on the scene.  Theoretically the adult would be so attentive that the R.A. wouldn't even get a chance to climb up on the sill...  Okay, sometimes we aren't always and literally on top of the R.A.  Don't forget that he is crafty in a super villain sort of way.  Listen, don't judge us!  The dishwasher is not going to unload itself! Despite living with said super villain we still have a home to run.

Despite taking care of the sill situation we still had the problem of the R.A. using his room as his own personal chamber pot.  My husband and I briefly discussed duct taping the diaper onto the R.A. but were dissuaded by the fact that the R.A. has sensitive skin.  Coincidentally at about this time my husband caught a documentary on television about a family that had six children on the autism spectrum.  Some of these children also removed pajamas during the night.  Their clever parents devised an ingenious solution, even more ingenious as it didn't involve anything expensive or complicated.  They purchased one piece, zippered, footie pajamas and cut the feet off them.  The pajamas were put on the children backward so that the children couldn't reach the zippers and therefore could not undress.  Genius!  Why those people were not nominated for a Nobel prize in science I will never know.  

Why I bring the "au natural" idiosyncrasy up is that it has reared its ugly head or rather bottom again.  Yesterday morning my husband discovered the R.A. in his room in all his "glories" and with various "presents" left all over the room.  As the R.A. had not engaged in naked time for well over a year, we had forgotten about it.  He has worn "regular" two piece PJ's to bed loads of times and has been put into his room for naps in his clothes without any incidents.  But that's part of the R.A.'s M.O.  He always lulls us into a false sense of security and then BAM! He's all about keeping us in a constant state of "What the hell happened?"  Between lack of sleep and messing with our heads the R.A. always has the upper hand.  So we're pretty much always where he wants us:

Confused, exhausted, frazzled, and a little frightened.

Frankly, I'm ready for the vaporization.

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