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, November 19, 2011

Holiday Season Kick Off (or Eff Up)

Today was our town's annual Santa Parade and we decided to go.  We had no idea how the undertaking would turn out but sometimes we just shrug and say, "What the hell.  We'll give it a go" - much to the never ending delight of the other people attending any event we show up at.

We began this afternoon's big adventure by having lunch at a restaurant on the parade route.  As we are not that devil-may-care we did select one of four restaurants the R.A. will willingly patronize.  It is also one of only two places at which the R.A. will eat the fries so another bonus was no extra McD stop.

The dining experience began after the requisite 15 minute arranging and organizing ourselves at the table.  It commences with my husband and me assessing the best place to sit the R.A. so he has limited contact with other diners (Note: Corner booths - good.  Round tables in the middle of rooms -  bad.) Next we have to get our daughter settled which means making her move from her original seat.  (This is a perpetual point of mystery for us.  She has been dining out with the whole family for going on 6 years now but still doesn't understand the logistics portion of the endeavor.)  Often my daughter is resistant to being moved which means my husband and I have to use that fake "we're in public or we'd just bellow" jolly voice to cajole her to move while hissing under our breath.  Meanwhile the poor waitress is standing there with menus and place settings waiting for us to get our sh*@ together.  I always give the waitstaff a lot of credit.  I'm sure they are far from thrilled to get us in their section to begin with and then we're a problem before we've even ordered.

Finally we are seated.  I next throw a possible monkey wrench into the works as I have to use the ladies room. Immediately. Even before we've ordered.  My husband looks apprehensive at the prospect of bucking protocol (and being left alone at the table with the Dog and Pony show) but knows better than to protest.  Unfortunately there is a wait at the ladies room.  The waitress, who knows us well enough to want to get us the hell out of the restaurant as soon as possible, has actually stopped by the ladies room line to double check my drink order.  She too is interested in just getting our dining experience over with.

Usually (like there is such a thing with someone on the spectrum) the R.A. likes this restaurant.  Today he is "having a moment" and I return to the table to find him in tears (the R.A. not my husband although my husband did have that bright eyed look one gets prior to crying - a look we both get a lot.)  My husband did not know what the R.A.'s deal was.  He said the R.A. started as soon as I left the table.  This puzzled us as we did follow the most important part of the dining out procedure in that we ordered the R.A. his french fries before we even sat down to ensure that the fries would come as soon as humanly possible*.  (Ordering this way also means that any time any waitstaff or restaurant personnel comes near our table the R.A. barks, "Feh fye! Feh fye!" yet another reason we are big favorites of waitstaff.)  My husband immediately started crafting an escape plan, getting a little panicky because due to the parade, all surrounding roads were closed.  I myself was too tired and hungry after an action packed morning spent doing the "Turkey Pokey" and tip-toeing around the turkey to get worked up.  Fortunately the R.A. did calm down once the fries came and happily occupied himself by eating and periodically demanding "Kehsup! Kehsup!"

The meal finished without significant catastrophes (no one more surprised by this than my husband and myself) so we headed out for the parade.  Unfortunately it was a bit crowded which meant we would have to subject other parade goers to us.  We squeezed into a spot and waited, not so much for the parade but rather for how the R.A. was going to react to the parade.

Initially the R.A. looked with great interest at the people around him.  It was almost as if he understood the sense of anticipation and he wore an expression that said, "Now what?"

Once the parade started, his expression became, "What's this about?"  He would look at the parade and then look around at the people watching.  If the R.A. could talk I think he would have leaned over toward the nearest person and said, "I don't get it.  Why are we doing this and why are they doing that?"

But then, because the R.A. is a slave to the rhythm, the beat of the marching bands got him.  He spent the rest of the parade rocking from side to side in perfect rhythm to whatever song was being played as the parade passed.  His expression now became one of delight and he would look at my husband and me with huge toothless grins.

The only dicey part of the parade involved parade people handing out candy.  Whenever one would approach us it would look like the R.A. was putting his hand out to take the candy when actually he was putting his hand out to repel the candy (unless it was a lolly pop in which instance he would grab the lolly and make like he was going to tackle the candy giver for more.)  Sometimes the candy giver thought the R.A. was taking the candy and let go of the candy at which point the R.A. would smack the candy to the ground while wearing an expression that clearly said he was offended by such a revolting offering.  The candy giver would look puzzled and my husband and I would hastily explain that the R.A. had autism.  Adult candy givers sort of got it but child candy givers did not.  Saying the R.A. had autism had about as much meaning as if we'd said he'd had egg beaters - ???

Smacked candy delighted my daughter who would scramble down after it, retrieving it with the possessed smile of a child who rarely got candy.  "It's wrapped so it's OK if it was in the street" she explained to me.

Most of the time my husband had a firm grip on the R.A.'s hood as occasionally he made like he was going to bolt into the parade.  We had visions of him knocking over a section of a marching band and the entire brass section going down like dominoes ultimately halting the parade. I'm sure that would endear us to the town - "Awful, Incompetent, and Harrowingly Stupid Parents Unable to Control Small Child.  Ruin Parade.  Run Out of Town By Angry Mob Led By Fed Up Waitstaff."

All in all it was a really good afternoon.  I'm sure we will pay for it tonight.  It's all part of the R.A.'s dastardly plan.

*If my husband and I were more organized we would have called the fry order in before we even got to the restaurant to really make sure the fries arrived in that dictator friendly fashion.  Unfortunately we are not that organized and commend ourselves that the children have at least left the house wearing shoes - maybe not matching pairs and perhaps not even their own shoes but feet shod none the less.  If you knew how chaotic our house was you too would be proud of us for this accomplishment

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