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."

Saturday, February 18, 2012

Mardi Gras in Massachusetts

At times the R.A. can be a bit of a handful.  I may have indicated that once or twice in a blog posting.  Apparently he can also have his bat-sh*# crazy, mad with power, super dictator moments at school so they designed a "time out" protocol to handle those moments when his behavior is a little less than appropriate.  Let me just say, they don't mess around at his school.  We don't just get a note saying, "Dear Mr. and Mrs. R.A.'s Parents: The R.A. has been extremely naughty as of late so we're going to start giving him time-outs."  We get an actual report, not just about what undesirable behavior he has been engaging in at school but it also has footnotes citing studies and other reports written by people with lots of initials after their names.  The report from school required our signatures and since we were so impressed/intimidated by the use of footnotes, we signed it.

So now we have a brand spanking new, still has that "new protocol smell" procedure for handling inappropriate R.A. behavior.  Except for the R.A., we are all on board with it.  That's important because there has to be consistency at school and at home.  We all need to be on the same page.  Again I'm talking about everyone except the R.A.  Not only is he not on the same page but he's not even using the same book as the rest of us and I also think he reads his book backwards and upside down. Which come to think of it is really at the root of all our problems.  We're using entirely different play books, for different games.

Here's the procedure in a nut shell: When the R.A. initiates inappropriate behavior i.e. lunging in fury at another person while brandishing the Sticks of Infamy, coloring on his sister, throwing an unacceptable juice cup at his father/manservant, chinning himself, chinning his bus driver, chinning an unsuspecting clerk at Target, etc., we are to immediately remove the R.A. from the situation and place him in the nearest chair facing away from any activity, especially "preferred" activity i.e. lunging in fury, coloring on other people, tossing juice cups, chinning unsuspecting innocent bystanders, etc.  We are to do this without saying a word.  We are then to stand near him but with our backs toward him to show that we are ignoring him.  They have used this method several times at school and the staff there says it does work because the R.A., used to being the sole center of attention (that's Copernicus, Mr. Copernicus if you're nasty) is completely baffled by being ignored.  When he's hustled into the chair the R.A. looks up at the back of the nearby staff member with a look that says, What the hell is going on here? His teachers say the biggest challenge with this new protocol is not laughing out loud at the R.A.'s expression.  You know it's remarkable when the kid with autism is desperate to make eye contact with someone.

Because we want to be good team players (and are a little intimated by his school - I don't even want to think about the reports that have been written about us) we have started using this procedure at home.  Surprisingly, our "time out" experiences have not been as overwhelmingly positive.  One time I applied the procedure and the R.A. refused to remain seated in the chair.  I had to keep placing him back in the chair and then tried to keep him seated.  As I was doing this without speaking it looked like some strange sort of Kabuki theater presentation which is saying something because if you've ever seen Kabuki, it is pretty strange in and of itself without the addition of a yowling, flailing kid with autism and his sweaty and out of breath mother.  Added bonus - I was in the middle of this when my mother's home health nurse walked into the room.  Of course I was!  Well, every good theater performance needs an audience!

This morning the R.A. was in rare form.  I don't know if he was channeling his inner rock star but he was determined to knock over a pile of books, not once but twice.  The second time as the R.A. was approaching the pile of just picked up books his grandmother warned him not to do it.  Clearly this offended the R.A. -  who did she think she was, thinking she could tell the R.A. what to do?  To prove his point the R.A. shoved the books over.  My husband swooped down, grabbed the R.A. and plopped him into a chair in our bedroom.  As dictated by protocol, we proceeded to ignore the R.A.  We determined that this had had a great effect on the R.A. as he kept grinning at us and demanding a tickle.

When the time-out session was done, I removed the R.A. from the chair.  He smiled up at me and climbed back up in the chair.  He scootched himself back in the seat, making himself comfortable, crowing with delight. The R.A. jauntily waved the Sticks of Infamy. He looked like a Mardi Gras king on his throne, waving to parade goers.  All he needed were some doubloons and necklaces to toss to me and my husband.  We removed him from the chair two more times.  By the third time we just left  him on the chair as now we would be engaged in some sort of bizarre reverse time-out protocol.  We were pretty certain staff at the R.A.'s school would not be down with that.

I do think an important lesson was learned this morning - we are as stupid as the R.A. thinks we are.

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