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."

Tuesday, August 9, 2011

Sleep Is Over-Rated

I am certain that we earthlings frustrate the bejaysus out of the R.A.  He finds it impossible to assimilate into Earth society because, to him, we are Magnificent Dopes of the highest order.  No, scratch that.  We're not competent enough to aspire to the "highest order" of Dopedom. I'm sure that when the R.A. first began his mission the plan was assimilation but as time went on and it became apparent to the R.A. that we are seriously messed up, he simply could not bring himself to do it.  I can imagine the calls "home:"

"Yes, it's me again.  Look, that Mommy lady has this thing about not allowing me to climb bureaus.  Honestly, it's bordering on obsession.  Every time I just manage to pull myself up into the sock drawer, there she is.  It's creepy."

"Listen, the food here is inedible.  There are seven maybe eight items fit for consumption.  I have had to fend for myself and those people are determined to starve me out.  Is this a mission or an intergalactic P.O.W. camp?  The other day I was forced to take matters into my own hands.  That Daddy guy took me to one of those CVS shops.  Despite being weak with hunger I was able to make a bee-line for the candy aisle.  Luckily I was able to recall its coordinates due to past recon.  The Daddy guy came bearing down behind me and we had quite a tussle over the utility sized bag of Dum Dums.  Of course I won.  I know the big man's Achilles.  No, it's not actually his Achilles tendon.  Let's just say it's further north and in the center and when I make contact he crumples like an old Dum Dum wrapper."

"Hi.  Yeah, it's me again.  Look, I just can't do it.  They poo in the jacuzzi and now they expect me to.  No, I am not making this up!  I wish they were as cultivated as barbarians.  No, I can't do this.  You've got to get me out of here.  They've stepped up their plans.  I am now wearing undergarments that are not absorbent."

As the R.A. cannot bring himself to assimilate into Earth society (and a transfer from Central Command does not appear forthcoming) he has adopted a different course of action.  He is going to try to mold us into one of his kind.

Boy, does he have his work cut out for him!  The R.A., however is fearless, relentless, and determined to whip us into shape - despite our astonishingly dimwittedness.  Obviously the R.A. digs a challenge.

Today's tactic was sleep deprivation.  The R.A. started serenading us with whiny cater walling at about 3 AM.  With neural typical children, the common wisdom states to leave them alone and they will either get the message that no one is coming or cry themselves to sleep.  This does not work with the R.A.  He has been known to go on for three solid hours.  That's the record and not a true one as he didn't stop crying.  We finally broke down and retrieved him.  You have to understand that the sounds the R.A. emits are very shrill and actually cause one's eardrums to rattle.  There's a real fear that if the R.A. is allowed to continue there will be ear bleeding.  Occasionally we will catch a break and the R.A. will piss, bitch, and moan for an hour and then for some reason he decides he's not up to the challenge and will go back to sleep.  We don't want to rush too soon into his room because as we often say, "Once you pull him out, you're stuck with him."  This morning we gave it the requisite hour and at about 4 AM my husband pulled the R.A. out of his room and brought him into our bed.  Such an act pretty much guarantees that neither my husband or myself will sleep but at least everyone else in the house has a pretty good shot of getting some sleep.

The R.A. is a terrible bed fellow - no doubt all part of his toughening up plan.  If he were all sweet and cozy and snuggled right down to sleep once ensconced in our bed it would defeat the whole purpose of his sleep deprivation plan.  Instead he torments us.  The R.A. has various methods - hair pulling (head, arm, eyebrow), jumping up and down on the bed and jumping up and down on the two twits in the bed, continued screeching in the bed, continued screeching in the bed while jumping up and down on the two twits in the bed.  Torture makes a crazed despot hungry so often in mid torture he will demand a snack.  Last night was primarily screeching and hair pulling night, interrupted only by orders for juice and chips.  As it was still very early morning my husband and I irrationally refused to acquiesce to this request.  I'm sure you know how that went over.

Once the R.A. was confident that we were denied enough sleep to function well during the day ahead he himself fell fast asleep.  No doubt he slept the deep sleep of one who knows he has done a job well.  And he did do his job well.  I base this on the fact that I put my pants on backwards this morning and did not notice until I got to work.

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