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, January 19, 2012

My Favorite Place in the World

As if having to spend the day being held hostage at his Institute of Earth Acculturation (school) isn't bad enough, the R.A. also has a teacher come to our house after school.  Obviously he is incredibly thrilled with the extra attention.  This is illustrated by the fact that when the teacher enters the house the R.A. greets her with "Bye, bye" or when he's feeling particularly hospitable a head butt to her legs. 

Prior to the after school visit, the R.A. spends some time in his room decompressing after his long day at the Institute being forced to do various distasteful things such as communicating in earth language, using the toilet for what earthlings intended, learning to wait his turn and other such abhorrent tasks.  No wonder he looks so wiped out when he gets home.  Sometimes the R.A. has had such an "Aye que dia!"* that he puts himself in his room.  As the R.A. drags himself up the stairs he yowls pitifully which I'm sure translates into, "My a#* is dragging!  Those women won't get off my back!"  Some days he's so spent he'll even fall asleep.

The R.A. runs hot and cold with regard to spending time in his room.  Primarily he is fine with it if he has initiated "room time."  It's not unusual for him to dislike "room time" at 3 AM because as the R.A. sees it, he didn't request to be in his room at that time therefore we deserve to be awakened by screeching and wall banging.  Weekday afternoons, however, the R.A. is far more amenable to remaining in his room after school, believing that if he remains in his room he doesn't have to have his session with his after school teacher.  Sometimes when we open his door a small voice says, "No.  No." and then a little hand appears and closes the door.  If it's an afternoon when his teacher is coming we end up hauling him out and by this point the soft "No's" are now several decibels higher.  We then have the added pleasure of wrestling him into a clean Pull Up.  The R.A.'s newest thing is refusing to put his shoes back on after the change.  I finally realized he thinks if he doesn't have shoes on he can't have his afternoon session.  Unfortunately for him we don't have the "No shirt, No shoes, No service" requirement.  This is hardly a formal establishment.

Not one to easily surrender, once changed, the R.A. will bolt out of his room and run into mine where he will jump into my bed and hide under the covers.  (That only fooled me eight or nine times.)  We then engage in a lively debate:

Me: Come downstairs, now.
R.A: No. 
Me: Come downstairs, now.
R.A: No.
Me: Come downstairs, now.
R.A: No.

You get the drift.  Finally I dig him out from the bed clothes and hustle him downstairs.  Sometimes this involves half carrying him while he yowls.  It's very exciting - will we make it down the stairs or won't we? 

This afternoon the R.A. faked me out and ran back up the stairs.  I found him in my room but in a new spot.  It was a new spot but still a familiar favorite.  I found him sitting on top of my mother's commode.**  He was sitting quietly while eating a Pringle and sipping juice, his little legs dangling off the edge.  The R.A. looked very content, an extremely rare sight.  It calmed him down enough that I was able to get him downstairs without much fuss.  He seemed to exude a sense of, "Now I'm ready."

Today, the first word out of the R.A.'s mouth upon seeing his after school teacher was, "Break" as in, "I really need a break."  Part of me understands this as there are some mornings I have to give myself a pep talk to enter my place of employment.  We all have those moments.  Maybe I ought to try some commode sitting.

*One of my mother's expressions.  It means "Oh, what a day!"
**My mother recently had surgery.  We are keeping her commode in a corner of our bedroom until the OT comes to install it in my mom's bathroom.  That is if the R.A. allows it to be moved.

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