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, December 6, 2011

Good Help is Hard to Find

Surprisingly enough, it is somewhat difficult to find a sitter for the R.A.  For some reason we are not inundated with people offering to babysit him.  People do offer to babysit his sister which causes me to say, "You know she's not an only child, right?"

So I was ecstatic when someone, under his own volition, (and also not under the influence of mind altering pharmaceuticals, well not that I'm aware of) offered to babysit the R.A.  I'm sure the potential sitter only made the remark to be polite but tough tofu - he put it out there and you can bet your sweet bippy I'm taking complete advantage of it. 

Mind you, we can't leave the R.A. with your run of the mill 9th grader.  Only the Kitchen God knows what would be the end result of that.  I'm picturing coming home to find the sitter bound and gagged with Thomas the Tank Engine sheets and the R.A. sitting in his father's sock drawer covered with melted popsicles and Pringle crumbs and cradling our set of steak knives in one hand while waving the "Stick of Infamy" in his other.  Of course that's my sunny and upbeat version of what would transpire.

No, our sitter is actually a trained professional - in mixed martial arts.  O.K., unfortunately we don't know someone like that.  The real sitter is a special education teacher with extensive experience with ASD kids including the R.A. himself.  It is pretty amazing that despite knowing the R.A., Mett* still offered to babysit him (the more I think about it the more inclined I am to consider that perhaps pharmaceuticals were involved...oh  well, beggars can't be choosers.)

Why do we need a sitter?  So that we can do dinner and a movie?  Attend the theater?  Enjoy a pleasant afternoon at CVS, shopping without worrying about someone jumping from the moving shopping cart to land spread eagle on top of the gigantic bag of Dum Dums conveniently located on the very bottom of the store shelf?  The reason we need a sitter is that this coming Saturday my husband and I are conducting a "Sensory Santa" at my place of employment. It is basically Santa for the sensory sensitive set - lights low, carols playing softly, and a Santa who is reserved and soft spoken - think Gary Cooper with a beard.  Ironically, we are unable to bring the R.A. as we can't run the program and watch the R.A.  Thus the need for a sitter.

The following is based on an e-mail I sent to Mett about the babysitting gig:

Dear Mett:
By the way, if you want to bring the R.A. to the Sensory Santa program at the library, you can.  It’s 9:30 – 11 AM and is a drop in and drop by program for ASD and sensory kids to visit with Santa.  I leave it up to you.  If you do decide to drop by, here are some helpful tips:

1.       Hold the R.A.'s  hand firmly as you enter the library as he will attempt to bolt from you.  When holding his hand give him wide berth as he will attempt to head butt you in your man bits as he struggles to free himself.  Don’t forget that the boy fights dirty.

2.       Although the activity is in the meeting room he will prefer to be in our audio-visual area where he will engage in stacking Thomas videos into towers and subsequently become infuriated when you intervene.  There will be aggressive chinning involved, primarily from the R.A.  but you might end up engaging as well depending on how frustrated you are.  Yeah, I’m going to go with you will be chinning too.

3.       He will also attempt to get into my office as we keep a stash of Dum Dum lollipops in there.  We have discovered that not only are Dum Dums the lolly of choice of Reluctant Astronauts but also middle schoolers on boring library tours.

4.       Do keep in mind this is my place of employment so try not to shame me too much.  Also, don’t take it personally if I act as if you and I (and the R.A.) have never met before.
  
So, I anticipate a big, fat, fun, and fabulous Saturday!

Yowlingly yours,
the R.A.'s mom

P.S. You may also want to know that although the school is now working off of the R.A.'s  new IEP which is firmly addressing the chinning issue, the chinning has blossomed.  Not only does he chin arms but now feet (his and other people's.)  If you have steel toed shoes it would be recommended to wear them.  Oh, and it does smart a bit when he chins an ankle – FYI.  You know what?  You might want to wear those fishing boots that go up to your hips.

*The name has been changed to protect the innocent and I don't want to blow it with the only person on the entire planet who offers to babysit the R.A. I am also required by legal action to do so.

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