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, August 31, 2012

Code No Please!

Membership in the Special Needs Club is not exclusive, especially if you are a card carrying member of the Autism Spectrum Division.  It seems that nowadays one can't walk 50 paces without tripping over someone on the spectrum - even less paces at my house and it would probably also include a shove. 

There's a saying, if you've met one person on the autism spectrum, you've met one person on the autism spectrum.  The autism experience also varies from family to family.  Parents sometimes have differing opinions on autism topics. For example, there is the whole issue of "labeling." Some parents don't want their kids coded, believing a label might limit their child's potential or make the child feel different.  That's their decision.  But let me just say this and then I'll shut up about it.  If a parent thinks that strategy will keep his kid from being labeled, think again.  It's just that instead of being labeled by a developmental pediatrician, your kid will be labeled by some other kid at school.  I personally would rather someone trained in child development assign a label to my kid. Plus that way you've got a better shot at getting a good out of school placement.  Okay, I will shut up about that now.

Other parents don't mind the label.  I fall into that category because let's face it, the minute someone sees the R.A. toe jumping, flapping for Britain, and caterwauling, the cat's pretty much out of the bag.  There's no "passing" for neurotypical.

I'm pretty up front about the R.A.'s autism.  Frankly I think it's due to habit.  It's the culmination of years spent chasing after a sprinting, yowling, "dead-set-on-destruction" R.A. while I bellow, "He has autism!"  It's really more of a warning to the innocent bystanders at the park, the beach, the mall, etc.  It's sort of like, "The British are coming!" or "Man your battle stations!" or "Danger, Will Robinson!"

I have no qualms telling people the R.A. has autism.  I recall after one particularly harrowing church experience I turned to my husband and said I wished I could put the R.A. in a sandwich board.  One side would say, "I have autism."  The other side would say, "What's your *@$%# problem?"  My husband put the kibosh on that idea, pointing out: 1. the R.A. would never leave the sandwich board on as it would impede climbing 2. the R.A. couldn't wear something that had *@$%# on it to church.  I countered that *@$%# wasn't a real swear word.  My husband counter-countered that even implied swear words count at church.  Sulkily I conceded.  *@$%#!

Confession time.  Occasionally, at the park or beach, I won't broadcast that the R.A. has autism because I enjoy seeing the puzzled expressions on the other parents' faces as they observe his antics. Their bewilderment is amusing. ( I also have a t-shirt that has a picture of 19th century armed Native Americans that has the caption, "Homeland Security.  Fighting Terrorism Since 1492."  I like it because it makes white people uncomfortable. *@$%# that nasty streak!)






Friday, August 10, 2012

Olympic Fever


Like most people, the R.A. is also suffering from "Olympic Fever."  We discovered the R.A.'s interest in the games of the 30th Olympiad when we noticed him watching the events with great attentiveness despite the fact that there was no ticker tape scrolling across the bottom of the screen.  He has two favorite Olympic viewing positions:

1. Jumping up and down in front of the television, yowling, while intermittently flapping his hands and flicking the TV screen
2. Sitting quietly on the couch, so absorbed in the action that he momentarily forgets his disdain for earthling protocol and thus looks like a "regular" earth person at repose, as opposed to his usual R.A. self

The R.A.'s favorite events, in no particular order are:
1. Platform diving
2. Springboard diving
3. Gymnastics

Whether jumping or sitting, the events hold the R.A.'s rapt attention and he thoroughly dislikes being interrupted while watching the Olympics.  When I do have the galling temerity to interfere with his viewing he snaps in Yowlish at me.  In English it roughly translates to: "For Kitchen God's sake, woman, zip it!  Can't you see I'm busy? I'm trying to understand this guy's technique for throwing himself off the diving platform.  How do you expect me to duplicate the same move from the top of the china cabinet?  You're so needy!  Take your own damn allergy medicine!"

We have determined that the R.A.'s engrossment in the Olympics is not in the interest of entertainment.  It's mayhem research.

During the Olympics there's been this one commercial that they've been airing about U.S. gymnast, Jonathan Horton. In the ad the narrator tells the story about how when Jonathan was four years old he climbed to the ceiling of a department store so his parents got him gymnastics lessons.  Every time my husband and I see that commercial we shudder.  We can't help think what it would have been like if we got "formal" gymnastics lessons for the R.A.  Wouldn't that be like giving the Green Goblin access to the Bat Lair?  Yes, I'm mixing my comics, but you get my point - don't empower someone with already freakishly potent skills.  I could see the television commercials for the R.A.:

When the R.A. was four years old, after two weeks of formal gymnastics training, he scaled the side of his house while clutching his sister's pet fish between his toes.  After one month of formal gymnastics training the R.A. absconded to Paris and was found dangling from the Eiffel Tower from one foot while clutching his sister's replacement fish in his other foot and demanding chips and juice from his father.

 I've been thinking about what the Olympics must be like on the home planet.  I'm sure quite different from earth competitions.  Remember - those people are like ancient Spartans on steroids but not as gentle, easy going or pleasant.  I'm pretty certain that there are no silver or bronze medals.  On the home planet there are no medals for "almost winning."  I would also bet that the losers do not go home in shame because as soon as they lose events they are beheaded.  There is no, "We'll get them next time" on the home planet.

Here are some events that I imagine make up the home planet competition:

1. Chinning: Refer to the entry, "Chin Chin Cheroo" for a description of this event.

2. Toe Jumping: Like earthling running events, Toe Jumpers could compete against each other for endurance (like distance runners) or speed (like sprinters.) -

WM476@#% is the reigning galactic toe jumping champion.  He took the event at the last Intergalactic Games.  All eyes are on him, seeing if he can pull off a repeat performance.  I guess we need to ask, how badly does he not want to be beheaded?

We should note that *!n74400X^ missed the last Galaxy Games due to a freak training accident during which she ricocheted into the training television that she was simultaneously flapping in front of.  

3. Hand Flapping/Finger Flicking: As with our earthling gymnastics, I would think these events would be based on judges' scores of performance and technique -

He is attempting a very daring "Flap-Flap-Triple Flick-Flap-Flick-Flap.  This is where we will see just how good his technique is.  Only one other athlete, ^^@,?0023B, has attempted such a move in competition and as we all know, he ended up with two sprained wrists which I'm sure didn't seem so painful once they lopped his head off.

That was a very innovative routine.  Now we will see if the judges appreciated her incorporation of an inverted Flick-Flick-Tap.  Perhaps it's just too avant-garde.

4. Large Gourd Wrangling: Refer to the entry, "Trick or Trick" for a description of this event.

One thing's for sure, the closing ceremony must be really brief because there probably aren't very many athletes left.  Bloody but brief.









Friday, August 3, 2012

Not for Those With Weak Constitutions

Or how my family is usually introduced to strangers!  Oh snap!


Yet sadly true...

Actually, this posting is really is about a topic that might cause those with weak constitutions to have an attack of the "vapors."  To put it delicately, I'm talking about boof and poop.  When it comes to vomit and other bodily excrement, my husband and I have become rather cavalier in our attitude.  In one month we have probably cleaned up more of the aforementioned than most people clean in a year. A disturbing yet proud accomplishment.  Boof and poop are such an integral part of our lives that we have the clean up down to a science.  For example, a couple of weeks back I rode in a charity bicycle event with a couple of friends.  After the event there was a cookout for participants and their families.  My husband and the R.A. joined us.  We were talking with one of my friends when the R.A. commenced with one of his "pre" boof coughs.  Alerted,  my husband and I quickly moved into our vomit defense stances.  First we swiftly navigated the R.A. away from my friends' plates and cups.  We might live a chaotic life but it hasn't dampened our sense of good manners.  While my husband positioned the R.A. in such a way as to limit the amount of throw up on his (the R.A.'s) clothes, I grabbed a handful of napkins from the buffet tent.  Once we were certain the R.A. had completed his act of reverse peristalsis, we used a nearby bottle of water to wet the R.A. down and clean him up.  Fortunately I had brought an extra t-shirt and we slapped that on the R.A.  Mind you, this whole endeavor took less than ten minutes, during which time my husband and I never ceased conversing with my friend.  She would keep saying things like, "Uh, we can talk later" or "It looks like you're pretty busy now" and we blithely reassured her that we had things under control.  Come to think of it, she did look pretty horrified by the entire thing which is pretty remarkable considering she is legally blind... If I was someone who wasted time with introspection I would investigate this.  But nope, I am not.


So moving along...

Anyway, my husband and I have become extremely skilled when it comes to these matters.   I like to think of us as an elite tactical Boof Removal Unit.

The past few nights this week the R.A. has been battling his environmental allergies.  Unfortunately for him, the environment is winning and we've had a couple of incidents of allergy barfing.  An incident earlier this week made a causality out of his Thomas the Tank Engine bed linens condemning this intergalactic war monger to sleeping on Disney Princess sheets.  

This morning the R.A. was up at 1:27 AM due to coughing which then caused him to boof all over himself.   Without a word to each other, my husband and I popped out of bed and went into action.  As this vomit event woke the R.A. up, in addition to throwing up he was also yowling in rage at being woken up.  My husband snatched him from his room and placed him in the bathroom, moving rapidly to decrease the amount of throw up trailage.  Although the R.A. was determined to climb into the tub to continue barfing, we managed to keep him confined to a little rug.  When we were confident the spewage had finished, we peeled his clothes off and put him in the tub.  There the R.A. continued to rage.  At this point his anger was increased  because he was rubbing vomit into his own eyes and by the Kitchen God he did not like it!  The R.A. was also further infuriated by my attempts to keep him from rubbing the boof into his eyes.  Greco Roman Baby Wrestling is fun on most days but throw in some throw up and it's triple the delight.  While I wrangled/showered the R.A. down, my husband went on vomit recon. in the R.A.'s room.  For someone so small who doesn't appear to consume much food, the R.A. vomits like a 7 foot,  4 inch, 345 lb. hung over longshoreman.  Let me just say that sometimes his room looks like something out of "The Exorcist" and we'll leave it at that (you're welcome, America!)  At 1:40 AM I pulled the still "gently" caterwauling R.A. from the shower.  Now he was annoyed with me because he was enjoying the shower and I was killing his good time.

Following these late night/early morning impromptu vomit/bathing episodes, the R.A. refuses to go back to his room, instead insisting on coming into our room.  Perhaps in Little Capernicus' mind if he's up, we're all up.  Fortunately the R.A. was quite refreshed after his "nap" and bracing shower and proceeded to yowl loudly and jump up and down in our bed from 1:40 AM to about 4:30 AM after which my husband tussled the R.A. back into his own room and lay down with him so I could try and get some sleep.  As the morning was still young, the R.A. then proceeded to jump up and down and yowl in his own room so loudly I couldn't sleep.  He finally exhausted himself at 6 AM and fell asleep until 9:30 AM.  Yes, part of me did want to go in and jump up and down on his bed and yowl loudly.  Lucky for him I was too tired to attempt such a thing.

Of course I had a program at work this morning.  I was bright eyed and bushy tailed, ready to tackle the day.  Not.  I was bleary eyed, droopy tailed and yes, I was ready to tackle the day and then wrestle it to the ground, punch it repeatedly, kick it senseless and give it a bone crushing throttle.  Due to my lack of sleep I was a fun cocktail of exhaustion and crabbiness.

Today's program was an homage to the ancient Olympics and the kids' teams represented original Greek city-states - Athens, Sparta, Corinth, and Argos.  I was so punchy that I kept mixing up the teams, causing the kids to declare indignantly, "I play for Argos!" or "I'm an Athenian!"  At one point I snapped at a kid, "Listen, it doesn't matter.  Eventually Greece is going to end up having one of the weakest economies in the E.U. and practically on the verge of a financial collapse!"  I know, rough talk.  I told you I was crabby.

I believe the Kitchen God said it best in his sermon on the Eiffel Tower: 


Blessed are the sleep deprived for they shall be easy to conquer.  And we shall know them by their extreme under-eye bags and mismatched footwear.