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, March 29, 2013

(Kitchen) God Bless Us Everyone

Those who regularly read this blog know that I am a person of faith.  Most days I survive on a wing and a prayer.  I pray pretty much all day long - "Christ on a Cross, give me strength! Get down from that china cabinet!"  "Suffering Mother of Jesus!  Get off that easel!"  "Jesus, Mary, and Joseph, get off the microwave!"  I am a very prayerful person.  Just ask the neighbors.

My faith is an important part of my life and that of my family.  My daughter has attended Catholic school since she was three years old.  Not that you could tell by observing her.  Even now, despite all these years of Catholic schooling, nightly prayers, and weekly Mass, she still comes across as borderline pagan.  I swear, every time we enter church and go to the pew she scoots right in.  Hissing I drag her out by her collar and make her genuflect.  She looks at me with an expression that says, "Really?  Genuflecting?  Is this something new?"  One time at Communion she was so discombobulated that the priest looked at me and said, "Has she not made her First Communion?"  I stammered, "Yes, she has."  He asked, "Recently?"  Stammering even more I replied, "Two years ago."  He shook his head, shrugged, and gave her Communion.  Mind you, this all happened in the midst of the Communion line. It caused such a delay that there was actual rubber-necking from other parishioners.  For those of you not Catholic, this is very unusual.  The Communion line is a beast of efficiency, probably because it was originally created by and monitored by nuns.  There is no shilly shallying in God's House, Mr. Man/Lady Jane.*

The R.A., despite belonging to a different faith (The Church of the Kitchen God, Reformed) does enjoy attending Catholic church. He seems to get a real boot out of it: "There's no hanging from the ceiling by your toes, but it's okay."   We attend the C.C.D. (religious ed.) Mass so there is always a lot of action.  The never ending parade of kids to and from the bathroom is a particular source of R.A. amusement.  His little head snaps from the left and right as the kids go up and down the aisle.  Sometimes he will flap in excitement, "Oh!  There's that kid!  I think it's his third time!  I love him!  Look at him go! And go! And go!"

The R.A.  also enjoys the music at church.  We've got one of those ancient monster organs that's so loud you can't hear the choir over it (not always a bad thing.)  Come to think of it, the R.A. probably  likes the organ because it sounds like it's yowling.  If they have dragons on the home planet, I'm guessing they sound like our organ but hopefully not as asthmatic.  The R.A. is a particular fan of the organist whose vocal stylings are akin to Marlene Dietrich in "Blue Angel".  One of these days I'm sure we'll glance up to the choir loft and see the organist draped over the organ, caterwauling his heart out while clutching a white rose.  It's  R.A. Soul Music.

This being Lent, they have increased church time at my daughter's school.  Thankfully this appears to have made her more reflective about her faith.  Yesterday I arrived home from work and she greeted me at the door, announcing much as I would imagine a Barrymore would, "Tonight I shall be performing a holy play because it is Holy Thursday."**

After dinner my mother and I got ourselves settled in the living room while my daughter set up for the holy play.  I figured the R.A., recognizing our preoccupation, would take it as an opportunity to climb all sorts of unsuitable things.  Surprisingly, he too settled himself in the living room.  I think he sensed something was going on and was curious.  The R.A. tends to be especially interested in anything involving his sister.

Now, lacking funding, materials, and time, this was definitely an off, off, off, off, off, waayyy off Broadway production.  It wasn't so much a play as a puppet show and even for a puppet show it was affected by lack of funding, materials, and time.  The cast was made up of a variety of animal finger puppets and random small toys - Pontius Pilate was played by a Sir Topham Hatt bubble whistle figurine and because of production challenges he also played the role of Simon the Cyrene.  And in a very ava`nt garde move, a plastic chicken inhabited the part of a Roman Centurion, and who, despite his short and plump stature, performed admirably.  Mike, the zebra finger puppet, was Jesus.  His Messiah was a mixture of solemn and pious and striped.  A small green plastic tennis racket served as the cross.

And so began one of the most creative performances of the "Stations of the Cross" ever staged.  Despite the unorthodox actors, it was quite good.  I was very impressed because my daughter knew each station by heart.  True, sometimes one of the characters would inadvertently tip over (not that chicken centurion!) but she did an extraordinary job of conveying the story of Christ's Passion and Death.  Not only did she convince me that she was a Christian but a Catholic Christian.  Amen!  Alleluia!

The show was so good we did have a curtain call.  The chicken got the most applause and forever after, no Passion Play will ever be the same if it doesn't include a chicken.  How could it?

I had expected the R.A. to lose interest within the first eleven seconds of the show.  Amazingly he remained seated and quiet during the entire performance.  I think he was waiting to see what his sister was going to do with his Sir Topham Hat whistle figurine.

The R.A. sat off to the side and therefore gave the show sidelong glances.  His expression was one that said, "What the hell is this about?  I mean seriously.  What's going on here?"  A couple of times we caught him shaking his head as if to say, "Man, this is messed up.  And they think I'm the weird one.   I really don't get their attachment to her.  What do they see in her?  I would have vaporized her a long time ago.  The only thing saving her is that I really like her stuff."

I think the reason the R.A. didn't bolt is that he couldn't.  It was like a car crash for him - even though it was gory and horrible, he couldn't look away.  Although, as my mother pointed out, technically the R.A. did look away as, because of the autism, he couldn't look directly at the show but rather watched out of the corner of his eye.  But he got enough of a gander to know he was a cocktail of bemused and horrified - bemified if you will.

The whole experience took a lot out of the R.A.  After the curtain call he let out a huge yawn and announced, "Night night time."  Before heading up to bed the R.A. did rescue Sir Topham Hatt from the curtain call.  I have not seen the figurine since. Apparently his understudy will fill in for future performances.

*Monikers of contempt habitually used by Catholic school nuns back in the day

**We actually have a history of of liturgical drama in my family.  Years ago, during Holy Week,  my then three year old brother came home from Catholic nursery school.  He and my mother were in the kitchen, my brother playing with his plush Mickey Mouse.  My mother watched him manipulate Mickey's arms and legs.  My brother turned to my mother and said very solemnly, "You know, they nailed Mickey to the cross."  And sure enough, he had arranged Mickey a la crucifixion.


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