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, June 24, 2011

The Kitchen God

The R.A. is not really a church going man.  It's not for lack of trying or even because he doesn't like it.  It's more his interpretation of appropriate church behavior and the congregation's interpretation of appropriate church behavior are extremely different.  Like at the playground, we don't have loads of friends at church.  It's yet another place that when people see us coming they sigh loudly or try to move somewhere else without looking like they are trying to move somewhere else and that it's because of us.  It's awkward for everyone.  I often want to reassure them and tell them I don't blame them and if I could sit somewhere else I would (but my husband won't let me - I know, I've tried.)

The R.A. doesn't have lots of verbal language skills.  But every once in a while he says something surprising - such as the time my family was scootching into the pew at church.  The R.A. was standing on the seat.  He turned to the people behind him and said, very very clearly, "Oh, sh#*!"  Twice.  It took him months to master "kwakah" (cracker) but he nailed sh#* on his first attempt.  Being the stellar parents that we are, my husband and I didn't look at the R.A. or even at each other, pretending we didn't hear the R.A.  But we all heard him.  I bet they heard it clear as a bell up in the choir loft - at the church further down the road.

Then there was the time at church when the priest was thanking the congregation for their prayers for his father who had recently had surgery.  For some reason the R.A. found this incredibly amusing and broke into hysterical laughter.  The more the priest talked about his father's condition the more the R.A. laughed. Did you hear the one about the father's father?  Hilarious! 

He loves music, even church music.  But once the final notes of the opening hymn start to fade, the R.A. is ready for some new entertainment.  Being someone who believes in taking the old bull by the horns, the R.A. doesn't mind providing it himself.  To start off, he looks within the pew for some pleasant diversion.  The R.A. very much enjoys walking across the pews, regardless of people already sitting in them.  His family doesn't mind leaning forward and sitting perched on the edge of the seat and getting punched in the back but unfortunately other parishioners sharing the pew are not as keen about sitting like that (I know.  What's up with that?  Unreasonable, right?)  After several wrestling matches involving the R.A., my husband, and myself where we attempt to prevent the R.A. from pew walking, the R.A. now looks elsewhere for amusement.  So he bolts out of the pew with my husband in hot pursuit.  The R.A. finds this hilarious.  He laughs upon pew re-entry, probably thinking, "You should see your faces!  Look at the big man.  Could his face be any redder?  A riot!  Good times.  Good times indeed."  My husband doesn't look quite as jolly.  One time the R.A. engaged in an Olympic worthy bolt, really challenging himself.  He didn't just bolt down the aisle - he bolted down the aisle, through the back lobby, shoved past the organist, out the door, down the church steps (of which there were many as the church is a Gothic design - I told you he outdid himself.  It's like he's preparing for some sort of Autism Iron Man competition), to the sidewalk.  For a big man my husband has a lot of hustle and managed to grab the R.A. just before he hit the street.  Since that day, except for holidays, the R.A. has been on church sabbatical and my husband and I take turns bringing our daughter or as we fondly refer to her "our little neo-pagan" (she thinks the R.A. is lucky to have autism because he doesn't have to go to church - "What a gyp!")

But don't assume that the R.A. is not a spiritual man.  He worships at home.

In our kitchen is a small bookcase in which various cookbooks are kept.  Recently the bookcase has become extremely interesting to the R.A., this interest illustrated by his jumping up and down in front of it and flicking the cookbooks with his fingers while making noises that sound like chanting.  He will do this for a bit and then stop and then start up again.  To me it looks like he is worshipping at some sort of Betty Crocker shrine.  The repetitive jumping, flicking, and chanting are like some sort of religious ritual.  I do think it's fascinating that the R.A.'s shrine of choice involves cookbooks considering due to his food allergies and food texture issues he wouldn't eat at least 99.9% of any of the recipes that were in the cookbooks.  I guess like any true religion, his is also full of conundrums.  I'm dying to see if the R.A. starts leaving offerings to his kitchen god - lollipops and bits of Pringles, maybe a Thomas train.  All I know is I hope he's saying a few prayers for me.  It certainly couldn't hurt.

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