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, January 6, 2012

I Mean Seriously, What Are the Odds?

Tonight, in a foolish fit of feeling adventurous, I decided to have a night out with the children.  As my husband works second shift, I would be on my own with, as we affectionately call them, the "Gruesome Twosome" (G2).

Our big night out commenced with a visit to the hospital.  Thankfully, no, not the E.R. (but for those who know my family it would automatically be assumed.)  Last week my mother had surgery and she asked if I would bring the G2 to visit her as she missed them.  Even though it was pretty obvious that it was really the meds. talking, I agreed.  Her one "recommendation" (read: "requirement") was that I put the R.A. in our ancient stroller that way he wouldn't race around the halls or attempt to jump up and down on random patients' beds.

Whenever one engages in any undertaking involving the R.A., the prevalent emotion is trepidation but I put on my big girl pants and off we went to the hospital.  I gave myself a pep talk and really fired myself up.  As I put the car into drive I think I got a bit carried away as I did holler, "Remember San Juan Hill!"* to which my daughter responded, "Oh, brother" and I distinctly felt a "she's soooo lame" eye roll.  I had an inkling it wasn't going to proceed well when we turned into the hospital entrance and the R.A. began keening in the backseat.   Unfortunately the R.A. is intimately acquainted with the hospital having required the services of the E.R. on many occasions.  As you can imagine those visits were extremely traumatic for everyone involved including  and perhaps especially hospital staff (I wouldn't be surprised if a few, after the experience, ditched working with people and changed to medical research.)  One low light was getting a cut on his head glued shut.

For someone who cannot identify what a spoon is, the R.A. can easily identify any medical establishment, even one that he has never visited.  We've driven by dental offices and he's had nuttys.

Determined, I kept driving into the parking lot, all the while shouting in a panicked sing-songy voice, "No doctor for you!  Let's visit Nana!  Hi, Nana!"  Oddly enough this did not calm him.

The next challenge was squashing the R.A. into the stroller.  Although quite small for his age he is still an alien in a 6 year old body.  He does fit in the stroller but the strap was too tight and I had a heck of a time getting it to snap closed.  I struggled so hard that I was beginning to sweat from the effort.  It also didn't help that the parking lot had practically no lighting and I couldn't really see what I was doing - a couple of times I thought I was victorious only to discover that I had inserted the strap into the R.A.'s jacket pocket.  As I wrestled, my daughter remarked, "We're going to be here all night."  I was already on edge between the R.A.'s yowling and the impromptu wrestling match with the stroller so you can imagine how well I took her observation.  Let's just say that if I ever begin a remark to you with, "Suffering Mother of Jesus!" head for the hills.

Finally, and only a mere 10 minutes later, I sort of had the R.A. strapped in.  For all intents and purposes he was strapped in, it was just done very creatively and not exactly how the stroller manufacturers intended.  Throwing caution to the wind (and common sense out the window) off we went.  All the while the R.A. was yowling and I was doing my irritating, "No doctor for you!  Visit Nana!  Hi Nana!"  It was even more irritating as I was huffing and puffing from the effort of pushing the stroller which was made even harder as the R.A.'s feet were dangling on the ground.

We entered the hospital.  I cannot imagine why, but we seemed to attract everyone's attention.  Now that I think about it, I believe it was because my daughter was wearing a headband with cat's ears on it.

Fortunately my mother's room was located no where near the hospital entrance so we got to march our strange little parade around a good chunk of the facility.  We're probably lucky the place didn't go into lock down on account of us.  Little blessings all around!

After completing our version of the Bataan Death March, we finally reached my mother's room.  She was thrilled to see us (again I suspect the result of strong pain medication).  The R.A. showed his delight by keening and yowling in anger and desperation although he did say, in the middle of his tirade, "Hi, Nana" which pleased his grandmother. 

My daughter and I attempted to visit with my mother.  The R.A. was working himself up into a right frenzy.  I ended up turning his stroller so that he faced the wall, thinking that if he couldn't see anything he would calm down.  No dice.  The R.A.'s caterwauling only increased, punctuated by occasional "Bye-Byes."

After a pleasant 15 minutes, we took our leave of my mother.  She didn't look sorry to see us go.  Neither did her roommate, hospital staff, or other visitors.

A fun evening yes, but it was no where near over yet.  This fun night out included dinner.  With shaking hands I inserted the key into the car ignition, took a deep breath, and thought how easy Teddy Roosevelt's Rough Riders had it.

As my daughter is like the Patty Hearst** of our little group I let her pick where we would go for dinner.  She selected Papa Gino's.  Although it's on the other side of town, I readily agreed as there is a McD's in the same plaza.  And, okay, maybe a small part of me thought that where it's clear on the other side of town our chances of running into anyone who knew us (or even knew of us) were slim.

I WAS WRONG!

At Papa Gino's I still had a bit of the shakes from our hospital visit.  This was illustrated by the fact that I initially I ordered "cheperoni cheepa" (translation: "pepperoni pizza".)  To her credit, the young woman behind the counter just looked at me carefully and said slowly, "You mean, pepperoni pizza?"  Still feeling somewhat traumatized I would have agreed if she asked me, "You mean, creamed cows' brains?"

Once I got the children settled in our booth, I started to decompress and was even beginning to feel proud of myself that I was "managing" (in our world that means both children were alive and present and accounted for.)  And then it happened.  THE MOM AND SON WE'D ENCOUNTERED DURING LAST YEAR'S DISASTROUS "NAPKIN INCIDENT" WALKED IN!  What are the freakin' odds? 

I took deep cleansing breaths to calm myself.  Maybe they wouldn't recognize us.  As long as we all ate with our heads down we would be fine.  Of course the son ran by our booth and loudly called out "Hi!" to my daughter.  I could also tell from a quick glance in the mirrored wall that the mom had seen us and she had immediately recalled last year's "napkin incident."  A funny expression flickered over her face and she walked by our table, determined not to make eye contact.  Okay, I get that we are a rather unorthodox and somewhat colorful group but we don't go around kicking puppies or engage in other vile activities publically).  That got my back up.  She had whipped out her phone and was making like she was on it so I boldly did everything I could to catch her eye.  When I stood up and waved my arms wildly she had no choice but to make eye contact and waved her hand limply.  I smiled smugly and sat down.  Oh, yeah.  Take that.  Point to me.  I will not be ignored! (Mind you somewhat incredible considering that not 30 minutes prior at the hospital I would have given my right arm to be ignored. I am a fickle one)

As I sat there, I thought that tonight we were in a better place as opposed to last year, primarily because I knew enough to ask/demand extra napkins at the McD drive-thru.  Tonight the R.A. was sitting next to me, quietly and contentedly munching his french fries and licking ketchup off his soggy chicken nuggets.  If one didn't look too closely we appeared almost normal.  And everyone had on matching shoes.

Toward the end of the meal the R.A. finally noticed that the wall he was sitting next to was actually a mirror.  He really enjoyed watching other diners in the mirror.  Eventually the R.A. realized that his own likeness was reflected in the mirror.  He crowed delightedly and pointed out his own eyes, nose, mouth, etc.  Then the R.A. saw that he could make faces in the mirror.  He especially was captivated by his mouth, teeth and tongue.  My daughter and I laughed at his antics.  I basked in the fun and normalcy of it.  But then it turned ugly - the R.A. began licking his reflection.

My feeling of smug superiority quickly evaporated and we slunk out of the restaurant.  Our evening culminated with me telling my daughter to mind the puddle of throw up that we came across on our walk to the car.  Despite me warning her twice, she still managed to step in it.  Very apropos.

I can't wait until next year's Papa Gino's encounter during which I am sure we will inadvertently burn the place down.


*A cry to rally troops, referencing the glory of Teddy Roosevelt and the Rough Riders charging San Juan Hill.

**A kidnapped heiress who was brainwashed and dragged on bank heists against her will.

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