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, June 23, 2012

Take Me Out to the Ball Game

I think that slowly it has dawned on the R.A. that the rescue ship from the home planet is not forthcoming.  Therefore he has begun to gradually and grudgingly acquiesce to some of our earth mores. I think the constant state of rebellion is wearing on him.  I mean seriously, even superior creatures from other planets can only maintain that high level of disdain/fury/disappointment for so long. 

The R.A. has become better at going out in public to places that he has never been before.  And by "better" we mean he doesn't lunge himself while howling furiously at some unsuspecting and innocent bystander (think something out of "Braveheart").  He has also discovered that he very much enjoys earthling watching.  Some kids on the spectrum have a hard time with places that are crowded and noisy.  Not the R.A.  In those situations he crows in delight while rocking and flapping for Britain.  If he had more expressive language I think he would say, "Look at that freak show of humanity!  I can't tear my eyes away!  It's like they all got dressed in the dark like the Mommy Lady!  Honey, just cuz they make it in your size doesn't mean buy it!"

This new found earthling tolerance means we are able to not only take the R.A. to more places but are also able to stay at said places longer than 6.5 minutes.  My husband, ever the risk taker, decided that this new development meant that we ought to go crazy and try taking the R.A. to previously verboten places.  Last night we attended a Spinners game.  It wasn't just a Spinners game but my daughter's school night at the Spinners that included a before the game barbecue.  So basically we were in it for the long haul.  Frankly I haven't made such a serious commitment since July 31, 1999 - my wedding day.

There was a bit of a wait to get into the stadium.  Luckily it appeared the entire cast of Cirque du Freak was in town because there was a constant parade of weirdos marching by us.  This kept the R.A. happily occupied with gawking and yowling.  A few times he would catch my eye and excitedly caterwaul something that I believe translates into, "I'm telling you, even stranger than the folks on Planet *^F45.  This is great!"

Of course, once inside the barbecue, the R.A. did not eat any of the food.  We did bring his own lunch box which was full of R.A. sanctioned food stuffs but he was too busy people watching, yowling, and stimming to eat.  During the barbecue he also decided he was too cool to sit with us and spent a good deal of time trying to shimmy down the bench away from his family.  The fact that another family was sitting at the other end of the bench was not a detriment and the mother, whose personal space the R.A. was clearly invading, did a good job at eating her own dinner while being systematically edged further down the bench by the R.A.  A few times my husband and I did halfheartedly try to get him to knock it off but then we surrendered to the heat and our own exhaustion and tossed out the "My Special Needs Kid" card.  That's when you say apologetically and with an expression that reads feel bad for me, "He has autism."  Then the person you are encroaching on is forced to say, "Oh, that's ok.  It's no problem."  So we did that and she ate the remainder of her meal with her dish on her lap.  Hey, she said it was no problem.

For some reason, that family wolfed down their dinners and bounded out of there.  As the event was crowded, another family quickly moved in. As the mother made to sit down the R.A., in an homage to Tim Thomas, attempted to throw himself across the bench to block her.  We immediately apologized and my husband and the R.A. engaged in a quick match of Greco Roman Baby wrestling as my husband wrangled the R.A. off the woman's seat area.  Unfortunately the woman made the poor choice of selecting ribs for her meal.  This meant that not only did the R.A. want to invade her personal space but he wanted to pretty much  sit in her lap and closely observe her eating.  That family, too, consumed their meals in record time and ran out of the area.

Finally it was game time and we made our way to our seats.  As we slowly descended to our seats we heard someone call out hello to our daughter. I couldn't believe it, it was the son from the family that has this uncanny knack of being around when we are at our craziest.  He gestured in the direction of his parents.  At this point his parents and my husband and I had a moment of "Selective Autism" in that none of us made eye contact and we all mumbled inaudible sounds.  My family shuffled into our row.  I comforted myself with the knowledge that at least they were two rows in front of us so that if my family did engage in any of our traditional insanity it would be behind them therefore the odds of them observing it would be diminished.  Always look for the silver lining, I always say!

Upon finding our seats my daughter was delighted to discover we were sitting right next to her new teacher.  To illustrate her delight she quickly wormed her way around me so that I sat next to the teacher.  I too was thrilled that the teacher would get a full dose of my family and the school year hadn't even started yet.  Talk about starting behind the eight ball.  Already I was having the time of my life.

As the endeavor of watching a baseball game is fairly sedentary, my husband and I were somewhat apprehensive about how the R.A. would do during the game.  Fortunately he seemed to really enjoy the experience from the get go, illustrating this by his jumping up and down, caterwauling joyfully, and enthusiastically wiggling his fingers.  All the more incredible as the game hadn't even started yet.  We quickly realized that we were situated immediately across from a small screen in the outfield that was tickering, "Red Sox Game Rain Delay.  Lester to Start."  That was all it kept looping but it was enough to satisfy the R.A.*  We exhaled in relief and  felt the Kitchen God was smiling on us.  For once.  Usually it's some sort of smiting not smiling.

At around the bottom of the fourth/top of the fifth inning, my husband and the R.A. began a heated exchange.  The R.A. had become very taken with the chairs in front of us, never minding that a few of them were currently occupied.  The seat directly in front of the him actually belonged to a toddler who spent most of the game in his father's lap.  Naturally the R.A. decided he wanted to stand on top of the back of that seat.  Being his usual unreasonable self, my husband did not allow him to do this.  To show that he disagreed with his father the R.A. tossed his juice cup to the ground.  My husband retrieved the cup and then manhandled the R.A. into his own seat.  The R.A. then snatched his juice cup back and furiously hurled it.  Of course it hit the back of the chair of the mother of the family that has this uncanny knack of being around when we are at our craziest.  My husband and I were horrified yet not surprised that out of the hundreds of chairs in the stands, that's the seat that the cup ends up under.  Apparently neither was that mother.  I swear she reached down retrieved the cup and handed it back without even turning around to look at us.  My husband grabbed the cup and we knew that was our cue to leave. We climbed over my daughter's teacher, bid her a good night and happy summer and skedaddled our way out of Dodge.

This was one of the few occasions that my daughter was not disappointed by our early retreat.  She wasn't there so much for the game as for the forbidden junk food.  Once the goodies were consumed she was ready to leave.  Basically the R.A.'s sister was set to head for home in the middle of the second inning.

There you have it, folks, our own distinct imprint on America's Favorite Past Time.  I can't wait until our first hockey game.

*Lately the R.A. has become a big enthusiast of the sports channels.  Although he does seem to enjoy the action of hockey, we've discovered he is actually a fan of the news ticker that runs at the bottom of the screen.  As we're pretty certain he can't read we think there are alien codes being transmitted in the ticker because the R.A. becomes quite excited when he sees it, jumping up and down in front of the television, yowling, and wiggling his fingers aggressively.   He does not do this on news channels which further convinces us of the possibility of the home planet using the ticker on sports channels to communicate.




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