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."

Monday, March 19, 2012

Holy #*%@!


On Saturday my husband and I once again threw caution to the wind (and common sense out the window - yes again to that too!) and brought the R.A. to church.  Sleep deprivation is responsible for either making us very brave or even stupider than most people credit us for.  The smart money is on the second option.  I also thought it's Lent which is all about suffering. So making the other parishioners suffer through Mass with us was really a service.  I'm sure if we had lived during the time of Ignatius of Loyola, enduring us would be part of his spiritual exercises. On second thought, it's probably a blessing that we were not his contemporaries as only we would break a Jesuit.  You're welcome, Roman Catholic Church!

If you recall from past postings the R.A. was no saint in church, at least not in the way we earthlings think of saints.  Probably on the home planet his behavior was considered quite pious.  Once his actions started causing my husband and me to have involuntary tics, the R.A. was placed on church sabbatical.

I am a person of faith.  This is evidenced by my very active prayer life:
  • My God!  What has he done now?
  • Christ on a cross!  Get down from there!
  • Jesus, Mary, and Joseph!  Is anything broken?
  • Suffering Mother of Jesus pray for me!  Is it the entire container of sun block? And no, pointing out that now he won't need sun block for the next 3 months is not funny!
With the way my life is, I seem to be naturally drawn to call on Heavenly assistance quite frequently.  I wouldn't be surprised if sometimes they put me on mute.  I don't blame them.

In addition to my incessant spontaneous prayers I also have some favorite formal invocations.  They are quite beautiful and inspiring:
  • St. Patrick: Christ be with me, Christ before me, Christ behind me. Christ in me, Christ beneath me, Christ above me.
  • St. Ignatius Loyola: Lord Jesus, teach me to be generous; teach me to serve you as you deserve, to give and not count the cost, to fight and not heed the wounds.
  • St. Augustine: O, Father, light up the small duties of this day's life: may they shine with the beauty of your countenance.
  • St. Richard of Chichester: Thank you Lord Jesus Christ for the all the benefits and blessings which you have given me, for all the pain and insults which you have borne for me...
  • Me: Dear God, please don't let the R.A. act too crazy during Mass!
Okay, that last one isn't particularly pretty or inspiring and my prayer won't be included in a book of devotions but it was answered because the R.A. did not act too crazy during Mass.  Now mind you, my interpretation of "not too crazy" is relative - meaning the R.A. did not bolt down the aisle while yowling in hysterics; he did not serenade us with a curse word ditty; he did not attempt to climb any of the stained glass windows; he did not lob his juice cup at an unsuspecting parishioner, lector, Eucharistic minister, altar server, pastor, or even a family member.  What the R.A. did do was to sit in the pew, rocking and waving his hands.  He occasionally cried out but he sounded pleased and wore an amused expression.  This expression clearly read, "Oh, these simple and primitive Earthlings with their quaint and backward beliefs!"  It's the same expression visitors wear when touring Shaker museums.
No doubt the R.A. was comparing our religious service with that on his home planet.  Based on the R.A.'s devotion to the small Eiffel Tower souvenir in our kitchen, I imagine that the focal point in his house of worship would be a large tower in the middle of the room.  I envision services for the Kitchen God to be far more rigorous than ours,  requiring much climbing and hanging.  No doubt instead of kneeling they teeter on the edge of the tower on tippy toes.  I propose that the services are extremely loud between the tossing and clanging of sacred objects and the cacophonous caterwauling of the congregation not to mention the caterwauling choir.  I wonder if instead of exchanging a sign of peace they energetically chin each other.  Perhaps they chin until one "chinee" tips over and the "chinee" still standing receives a special blessing from the Kitchen God. 
"This service is over.  Go now and chin in fury."

"Thanks be to the Kitchen God."

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