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."

Sunday, November 18, 2012

I Love a Parade...Sort Of

Yesterday we attended our town's annual Santa Parade.  As we did last year, we ate lunch at a restaurant on the route.  Other people had a similar idea and the place was packed, much to the R.A.'s dismay.  We also had a waitress who was unfamiliar with our routine, meaning the minute we entered the door an order for french fries should have been put in.  It was not and the waiting caused the R.A. significant anxiety illustrated by his constant observation of the pick up window, yowling, and energetic hand stimming.  The stimming was so vigorous I was afraid he was going to sprain his wrists.  To add insult to injury, my daughter and I both received our food before the R.A.  At this breach of protocol the R.A. caterwauled in fury: "Listen Lady, I don't know if you're new here but I'm sort of a big deal.  This is unacceptable.  I demand to speak with your superior officer!"  My husband and I were somewhat nervous that we would be in for a "Vomit of Retribution."  Finally the R.A.'s fries arrived and he settled down, his silence only interrupted by his barking for more fries.  There was one brief moment where we did fear a vomit eruption but it was averted by my scraping off the offending chewed up blob of fries from the R.A.'s tongue and then wiping his tongue with a napkin.  Fortunately he deemed his tongue and mouth reasonably cleansed from the repellent morsel and continued eating and we enjoyed the rest of meal in relative peace, well, for us.

The only slight ripple was when it was time to leave.  As the R.A. was still noshing on his fries, he was loath to leave and while we were wrangling him into his coat did attempt to lunge across the table to snatch more fries.  Twice.

As we left the restaurant, the R.A., still annoyed by our premature departure, yowled and chinned his father's hand.  I think it also included some preemptive caterwauling along the lines of, "Now what in the Kitchen God's name are you making me do now?"

The R.A. quickly discovered it was to stand on a nearby sidewalk.  He looked around at our fellow sidewalk loafers, his expression reading, "And we are doing this because...?"  A few times he stepped off the curb and looked up and down the deserted street.  He would then look around him as if to say, "I still don't get it." 

The R.A. had also decided that we were more than the usual embarrassment to him and he diligently worked to look as if he were not with us.  No matter how many times we requested he come and stand with us, he resisted.  Sometimes he would stand near us but then, slyly, shuffle a few more steps further away.

The parade had not yet begun but the toy vendors were trotting their carts up and down the street.  These the R.A. found quite interesting, especially when he noticed multiple "Sticks of Infamy" (SOI)* hanging off them.  The first time he recognized this he actually did a double take: "There are multiple SOI's?"  A few times the R.A. also tried to run after a cart.

His sister purchased a small red dog attached to a SOI.   Initially the R.A. was too busy chasing the carts to notice.  Eventually he did, illustrating this by jumping, flapping and caterwauling.  His sister, quickly catching on to what that meant warned him, "Don't even think about it."  The look he shot her said, "We'll see."

As we were on the sidewalk, the traditional thoroughfare for pedestrians, people did walk by.  This was a great affront to the R.A. and as people passed he would jump up and down indignantly and stim his fingers at them.  To the casual observer it looked like he was putting a hex on them.  Perhaps he was...

At this point the R.A. had become intrigued with a nearby family.  Initially we thought it wasn't so much that he was interested in the family as it was in an abandoned SOI that one of their children had carelessly tossed next to an unoccupied lawn chair.  The R.A. cased the scene.  Slowly and cagily, he would edge toward their "parade base" and then, confident that no one was looking, would charge toward the SOI only to be thwarted by me, my husband, or his sister.  Yowling in indignation, the R.A. would stomp back to our general direction, wait about 28 seconds and then renew his assault.  This went on a few more times until finally the R.A. admitted defeat.

He then turned his attention to a small grassy area that was behind us.  Children were running and twirling streamers.  The R.A. observed them wearing an expression that I'm sure Jane Goodall wore when she was out in the mist observing gorillas.  After a bit he ran into the middle of all the activity and began spinning and caterwauling.  The other children immediately dispersed.

Due to his numerous attempts to chase down vendor carts, steal an SOI, and spinning, the R.A. had worked up quite an appetite.  He stumbled back over to us and demanded juice and chips.  He ate a chip and sipped some juice and then carefully placed them on the sidewalk next to our backpack.  The R.A. then ran back to the grassy area for the start of the parade.  He would skitter back to us to nibble a chip and sip some juice and then scamper back to the grassy area, reminding me of a yowling squirrel. 

The R.A. then became enamoured of the SOI family, even going so far as attempting to join their group, obviously attracted by their fancy lawn chairs and assortment of SOI's.  He did try a few times to jump onto their lawn chairs,some of which were unoccupied.  The R.A. showed his unhappiness at being denied access to a new family by tearing his hat off his head and throwing it to the ground while viciously yowling.  For some reason this alarmed the R.A.'s potential new family.

Foiled in his attempt to be adopted by another family, the R.A. next turned his attention to a nearby row of trees.  He spent some time trying to climb them despite the fact that none had any low branches.  The R.A. eventually discontinued this enterprise and thus engaged in tree to tree to tree to tree wind sprints, pausing to boogie whenever a band marched by.  By boogie I mean rocking side to side while caterwauling.

While frolicking amidst the trees, the R.A. unwittingly acquired a playmate - an unwanted playmate.  Much to the R.A.'s horror a toddler was quite keen on wooing him to be her newest chum.  She tried to befriend him by offering him long twigs.  He vigorously rebuffed her gifts by turning his back toward her and even running to the other trees with her in hot pursuit.  Undeterred she persisted.  Eventually she concluded the R.A. was not a twig man and switched to pine cones.  These too were met with rejection and an expression that was a cocktail of panic, disdain, and exasperation - all made by energetically not making eye contact.  The R.A. finally accepted her offering of a leaf, probably just to get her off his back.  The minute the leaf touched his hand he batted it to the ground.  The toddler then tried to impress the R.A. by rubbing dirt on one of the trees.  He looked at her as if to say, "Really?  That's all you've got?  How lame."  The R.A. then stomped off to angrily demand gummies from his father and then irritably chomped on them.  The toddler, finally getting the message that the R.A. did not want to make friends, did not follow.

When we returned from the parade the R.A. made a half hearted attempt to steal his sister's new SOI.  He then shut himself in his room, obviously needing time to decompress after such a hellish afternoon.  The R.A. caterwauled for a bit and then fell asleep, drained by the Santa parade -  as most of us are.

Happy Howlidays!

*I have to mention that the original SOI was finally retired, covertly, earlier this year.  After withstanding many many rigorous and furious brandishings, it was quite tattered.  We had a small yet tasteful send off to the trash while the R.A. was at school.


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