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 11, 2012

Not for those with delicate constitutions

The R.A. woke up in a foul mood.  Although I don't speak the language I know what was spewing from his mouth were alien profanities.  Upon being let out of his room he stomped around the second floor like a mad man, wildly yowling.  As he approached my bedroom where the lights were on the R.A. screeched, "No! No! No!" and then stomped over to the light switch.  He was so intent on his task that he tripped and nearly took a header into the wall.  Luckily I was there to catch him.  He thanked me by growling at me and gesturing for me to turn off the light.  Of course I obeyed as I didn't want to increase his wrath.  The R.A. would not allow any lights on and at one point tried to cover over a window to block any light coming in from outside, not that there was much as it is a gray and cloudy day.  As I showered in the dark I decided fuzzy legs were better than nicked legs and forfeited shaving.  Plus, tomorrow is supposed to be frigidly cold so the extra layer of warmth will be most welcome. Even in the dark I can find a ray of hope (just don't tell the R.A. as this would no doubt infuriate him.)

Fortunately, as the morning progressed his nastiness abated.  By the time I returned home from taking his sister to gymnastics the R.A. was downright pleasant.  Perhaps this was due to him working out whatever issues were bothering him or maybe because his father took him to McDonald's at 10:30 AM this morning for chicken nuggets and french fries.

My husband said the kid at the window at McDonald's tried to tell him that it wasn't time for lunch items.  That kid didn't know that we are well-schooled in local McDonald's schedules.  My husband informed him that lunch started being served at 10:30 AM and that it was after 10:30 AM - it was 10:33 AM.  Miraculously my husband got his chicken nuggets and fries almost immediately.  I think the manager probably recognized our car and said, "Aw, hell.  It's those people.  Get them what they want and get them out of here."  Either that or there's a poster in the staff area telling staff we are major P.I.A.'s and to just give us what we want so we leave, the sooner the better.  Frankly, we spend so much money at McDonald's we ought to be on the corporate Christmas card list.

This afternoon my husband took our daughter to a birthday party at a local roller rink (you should see him "Shoot the Duck!")  My mother and I decided to take the R.A. out to lunch with us at the only non-McDonald's place that the R.A. will permit.

We got off to what could have been a rocky start by sitting in a completely different section from where we usually sit.  Initially the R.A. just walked through the restaurant door and proceeded to that section not paying any mind to the people that were already occupying those tables.  When I called to him he stumbled over in a great state of confusion.  I tried to lead the R.A. over to our table but he kept walking in circles as he tried to both follow me and head toward our usual section.  It's like he was saying, "Yes, I do want to eat french fries but I need to sit at one of our tables to do that.  I don't know if I can eat french fries over there."  Finally, slowly and with an air of uncertainty, the R.A. made his way to the table.  He hesitated for a moment, looked at me for clarification and eventually climbed into the booth.  The R.A. looked around for a bit as if trying to acclimate himself to his newer and more exotic surroundings.  He then bounced on his knees a few times and then smiled, enjoying the lift he got.  No doubt there was more lift in that seat as we'd never sat there before so the springs still had a lot of spring to them.

The restaurant staff is so used to us that the R.A. expected them to bring the french fries the minute he sat down.  As this did not happen he kept looking over at the pick up window.  Any time any wait person walked by our table he'd look at them with an expression that clearly read, "Hey, where are the french fries?"  One waitress tried to talk to him but the R.A. was so distracted by checking out the pick up window that he couldn't be engaged.  She finally gave up and exchanged pleasantries with my mother.

Despite having french fries for breakfast, the R.A. pounced on his fries as if he were a starving man.  It's only due to the grace of the Kitchen God and texture issues that the R.A. didn't bite the waitress' arm as she placed the plate of fries on the table.  He didn't let a little thing like the fact that the fries were still steaming hot prevent him from attempting to eat a fry.  They were so hot that the R.A. would pick up a fry and immediately drop it due to the heat.  This occupied him for several minutes until the fries were at least not blister-inducing hot as he nibbled them.

Usually lunch out with the R.A. isn't so much a leisurely meal as a food challenge.  Typically the R.A. is bouncing on his seat, brandishing ketchup laden fries, and yowling loudly.  When he's like that we're actively shoveling food into our mouths because we don't know how much time we have to eat before he starts throwing things.  We're not able to converse because our mouths are full and we barely have time to breathe let alone chat.  Not to mention that even if we wanted to, the R.A.'s caterwaulings are so loud that we can't hear each other over the din.  Nothing like a pleasant meal out!  It's too bad Adam Richman isn't doing those food challenges any more.  I would love him to take on the Reluctant Astronaut's Lunch o' Pain (antacid not included!)

The R.A. was so content and quiet that my mother and I were actually able to eat our own meals and engage in polite conversation.  It was too good to be true and just goes to show you how unrelentingly stupid we are.  We should have known that the R.A. was setting us up.  The meal was almost concluded when we heard it.  We both immediately stopped talking and all attention focused on the R.A.  The "it" I refer to is the "gag of possible reverse peristalsis," a.k.a. throwing up.  The minute we hear it, under any conditions, we stop whatever we are doing and rush to the R.A.  We hold our breaths as we watch him.  Will he or won't he?  The suspense is palpable.  The initial gag is really more of a harbinger of possible doom.  So we wait and subsequent gags come, spaced intermittently.  Unfortunately longer spaces between gags or even dwindling gags are no indication of whether a barfing is coming.  At home when the gagging starts we usually scoop him up and rush him to the bath tub where he stands and gags.  If we can manage it we also start to remove his clothes.  When we're out and about we don't have this "luxury." Today as the R.A. gagged my mother and I started gathering up any napkins we had on the table and I situated plates in front of the R.A.  Almost immediately the R.A. started throwing up.  The trick in these situations is damage control.  I bent his head over the dish to keep him from getting sick on the table or seat.  Initially I was managing it quite neatly but then the R.A. kept trying to put his hands up in front of his face therefore some vomit got on his hands and shirt.  But, I am proud to say, I did keep it from getting on the seat and table.  Once he finished I then began cleaning him up as well as the dish and napkins we used during the "situation."  It was done with a well practiced military precision which included obtaining a bag for soiled napkins, cleaning off the barfed on dishes, two trips to the bathroom to obtain wet paper towels and disposal of the bag. The whole incident, from first gag to last bathroom trip took less than 10 minutes.  Clearly this was not my first rodeo.  My husband and I have this thing down to a science.  One time when we were at the 99 and the R.A. started, my husband actually caught the vomit in his own hand while we scurried for napkins.

The wait staff was amazed by the whole thing.  They were concerned that the R.A. was sick from a bug.  Nope.  Just felled by a french fry which caused him to choke.  Damn that sensitive gag reflex!  Before  we left the R.A. was once again bouncing on his seat demanding "Feh fies! Feh fies!"  Even if he hadn't, my mother and I had had enough and we left.  I've only got so much "vomit" magic in me.

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