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."

Friday, May 20, 2011

Chin Chin Cherooo

It's not usual for people on the spectrum to "stim" - an action that self stimulates the nervous system.  Actually most people stim, it's just that primarily people not on the spectrum partake in more socially acceptable stimming - sitting and tapping or jiggling a foot, drumming fingers on a table, jingling change in a pocket.  The stims of people on the spectrum are different from what most of us are used to.  ASD stimming may be spinning, hand flapping, toe walking.  Or even more exotic things. The R.A. engages in the three that I just mentioned and also something we have named "chinning."  Whenever he is overly something - angry, frustrated, excited, thrilled - he "chins."  Basically he digs his chin into whatever is around, his own hand, someone else's hand, arm, leg, whatever is available.  Let me tell you, that kid's chin is tough.  I've had bruises on my arms or legs from chinning episodes.

We don't know why the R.A. does it.  We only know it occurs at that "overly" moment.  Lately he seems to be doing it a lot. So I guess he's been experiencing lots of emotions.  Of course it all hearkens back to the home planet.  It must be something that they do at those "overly" moments.  When they are happy it must be an alien equivalent of a high five.  When unhappy it must be like a mini tantrum.  Maybe instead of boxing they have two aliens in a ring who chin each other?  Or perhaps it is more of a display sport where aliens chin themselves in front of a panel of judges and they received marks for form, technique, and creativity.

"Q-Quork 7 is back competing after recovering from a horrific chin accident that sidelined him for most of last season.  The question is, does he still have it?"

"39:X8 is the rookie but she is truly a fresh face in the world of chinning today.  Seemingly single-handedly she has generated a renewed interest in the sport, creating the innovative chin squeeze and release and chin move."

Typically part of ASD treatment is to channel the unusual stimming into something more socially acceptable and in the R.A.'s case something that doesn't leave bruises.  One member of his team (who does not interact with R.A. that often) gave us hard rubber balls to use.  The idea was that whenever R.A. chinned we were to give him the ball and he would chin that.  Not to be a "Debbie Downer" but  I knew immediately that the balls would not work.  We've been working with R.A. on playing catch and of course using different kinds of balls as a way to combat that generalization thingee of his.  Well, every time the R.A. chins and we hand him one of those balls he stops briefly, tosses the ball and then goes right back to chinning.  I guess in a way it does detract him but only for a few seconds.  The good news is that he does have pretty good generalization with balls.  Hey, we find our blessings where we can.

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