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, May 24, 2013

The Spoils of War

My daughter was assigned a "book report bag" project.  For those lucky enough not to be in the know, instead of composing the traditional written report on paper, one decorates a bag with pictures relevant to the book and puts inside the bag props representing the culture of the the book's characters.  I like to think of it as a book report for the illiterate.  It reminds me of how back in the middle ages since nobody could read, priests used pictures in churches' stained glass to teach people about the Bible. This un-book un-report is due the day after Memorial Day and like most parents I did not relish ruining a holiday weekend working with/cajoling/threatening/hollering at my daughter as we tackled the project.  Rather I elected to ruin Mother's Day and we spent a lovely afternoon replete with whining, ill conceived defiance, and ultimately sullen and resentful cooperation.  Pretty much the usual Mother's Day stuff.

Despite the project's stresses, once my daughter and I finished it and ceased snarling at each other, I stood back to admire our work.  I made my husband come and admire it and  he wisely commented about how great it was. He then asked when it was due.  I crowed about how early we completed it.  No last minute scouring the house for tape and ultimately using chewing gum to stick stuff on for us.  Oh, no.  We utilized actual  tape and glue because I had done actual "pre-project" materials shopping.  My husband let me blather on for a bit and then delivered the knock out punch -  how long did we think the bag would last in our house?  It literally stopped me in mid brag.  Crap.  I had made a serious tactical error and left the precious book bag vulnerable and exposed to the enemy.

Those of you who have read this blog understand that our house isn't so much a home as a war zone.  Because the R.A. is hell bent on world domination, our house is in a constant state of war and we are perpetually under threat of attack if not being directly attacked.  Although most of his methods are unorthodox they are, none the less, potent and effective (sleep deprivation, light deprivation, food deprivation, matching outfit deprivation.)  The sheer relentless nature of it has exhausted us and we have tried several times to surrender but the R.A. despises losers and only punishes us more aggressively.  As the saying goes. "All's fair in love and war" and that goes for our house, particularly our hard wood floors and white walls.  The R.A. uses a lot of psychological warfare on us and nothing is off limits.  The more you treasure something or the more important the item the greater the chances of its destruction.  The book bag was a sitting duck.

Due to a cocktail of panic and stupidity I proposed that perhaps the R.A. would not notice the bag and if he did would be uninterested.  Apparently the R.A. must have been lurking nearby because, as if on cue, he came careening into the room at full throttle but shrieked to a hard stop in front of the bag at which point he yowled in ecstasy and attempted to grab it.  Usually the R.A. prefers stealth mode when it comes to destructive attacks but in this case his enthusiasm got the better of him and betrayed  his target.  My husband and I exchanged dismayed looks and immediately began planning  a safe haven for the bag.

Initially my husband suggested the very top of a 5 tiered shelf in our bedroom.  I pointed out that location would only be doubly attractive to the R.A. - a chance to climb and gain access to forbidden fruit.  We might as well hand him the bag and encourage him to have at it.

After much discussion we finally decided to keep it in our daughter's room.  It did have an outside lock on the door and Fishy Noodles II did survive for more than a year inside so the room was a somewhat secure location.

For the most part it was a good plan.  But it did mean we had to live in state of heightened vigilance.  That door must remain locked at all times, except when occupied and I have to admit that even in that situation I would have rather it remained locked. My daughter was disturbed by the prospect of being locked in her room and my husband managed to talk me out of the locked at all times route.  Reluctantly I relented but we stressed the importance of keeping the door closed and locked when unoccupied.  Not trusting the R.A. a whit I told her even if she gets up in the middle of the night to use the bathroom to lock the bedroom door while she was out.  She looked at me with an expression that clearly said she thought I finally went around the bend.  "But he'll be asleep in his secured room," she stated.  But on this I would not give in.  The R.A. is fiendishly clever.

True to his form, the R.A. took any and all opportunities to invade his sister's bedroom.  His usual M.O. was to lie in wait in his own bedroom and once the coast was clear to creep into the room.  One of us would notice how quiet the house had become and, in a panic, go on a hunt for the R.A.  We would find him  in front of his sister's bureau, on top of which sat the coveted bag.  Fortunately we always got to him before he managed to grab the bag.  Often we would discover him flicking the bag with this fingers and jumping up and down on his tip toes.  Unlike the traditional toe jump/finger flick move it was not accompanied by the requisite yowling.  After all this mission relied on stealth.

After a week of attempting to keep the bag safe, we were starting to feel the emotional and physical strain.  We just couldn't keep living that way and decided to send the bag into school several days early.  True we ran the risk of an inadvertent school accident but as I explained to my husband at least the teacher would see that the bag existed.  I just wanted the damn thing out of the house and for our lives to go back to "normal." 

As we had invested so much time and energy into protecting the bag we probably elevated its significance.  Not trusting our daughter to transport the bag to school unmolested, my husband dropped the bag off at school.  When he appeared in the school office with the bag (which was tucked securely inside another bag) he explained the project was being dropped off to avoid becoming wartime booty. The secretary was like, "Okkaayyy," clearly thinking we were odder than the school originally thought we were.  My husband told me he wanted to take the bag right to our daughter's classroom and even though he lobbied hard the secretary would not let him.  Finally she pretty much had to swear an oath that she would bring it, unharmed,  to the classroom.  My husband also said that after he reluctantly handed the bag to the woman he stood there expecting her to bring the bag immediately to the classroom.  Finally, acknowledging the serious level of my family's insanity, she realized he was not leaving until she did.  So she did.  My husband watched her.  He reported that as the secretary walked down the hallway she kept glancing back nervously.  I think at this point she was glad to escape him.

So, yes, maybe we have created yet more evidence that we are a family of freaks but by the Kitchen God we did our duty and protected that lame ass project.  War is hell.  Vaporization now!

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