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."

Tuesday, April 2, 2013

Happy Autism Awareness Month, Dopes!


It's the most wonderful time of the year!
They'll be much finger flicking
And Sticks of Infamy clicking
So be of good cheer!
It's the flap, flappiest time of the year!

Happy Autism Awareness Month!  Of course in my family we like to say, "We don't need no stinkin' month!"  We get to celebrate Autism Awareness of every second of every minute of every hour of every day - toe jumping optional.  I don't see why the rest of the world gets to have a pass but for one month and on those odd occasions when my family shows up.

Autism Awareness Month (or AAM as those of us in the "in-crowd" refer to it) got off to a rocky start at our house.  Unfortunately AAM Eve coincided with Easter and the R.A. was greatly displeased by the Lord's gumption to have his whole Resurrection thing encroaching upon the R.A.'s special time of year.  The R.A., like most of those hell bent on world domination, is not about "share-sies."

At our house the Easter Bunny leaves a scavenger hunt for good children to find their Easter baskets.  The sheer excitement of it created an alternate universe of sorts as it was my daughter who was up at 5 AM and the R.A. slept in.  We managed to hold her off until shortly after 7 AM by which time the R.A. was awake and partaking of his usual morning routine in our room  - demanding chips, crackers, and juice, jumping on the bed, climbing bureaus, jumping on the mini trampoline, climbing the bookcase, demanding different chips, demanding different crackers - you know, the typical wake up stuff.

By this point my daughter was actually vibrating with excitement.   Finally she announced, "It's time!  We negotiated 7 AM!"    (Yes, she did say "negotiated."  She is a voracious reader and spends a lot of time tossing around these pre-SAT words.)

So then we turned to the R.A. and explained that it was time to go downstairs.  He declined the offer.  We then chirpily explained why we were going downstairs: "Oh, fun!  The Easter Bunny came and left something special for you!  How nice!"  He listened, his expression one of puzzlement mixed with incredulity and having more than a slight hint of irritation.  We tried to more aggressively jolly him along.  The R.A. wasn't having it.  He declared, "No please!  No please!"  He then tried to push my husband back into bed as if to say, "According to the non communicated yet specific no school morning guidelines, the Daddy Guy is supposed to remain in bed for 28 more minutes while I stealthily attempt to climb inappropriate items.  Or he is to remain in bed until I demand a food item, the more outrageous the better.  At which point I then grab his leg and try to haul him out of bed or I hit him on the head with the clicker.  You are currently breaking protocol.  What part of me shrieking, No please!  No please!, don't you get?"  Finally we ended up doing the scavenger hunt without him.  Typical despot that he is, the R.A. waited for his Easter goodies to be brought to him.  He looked favorably on the items left by the Easter Bunny.  Those given to him by his grandmother were regarded with a horror one usually only reserves for materials covered with anthrax.  My daughter was pragmatic, "It's okay, Nana.  They won't go to waste.  I'll just take them."  What a little heroine!    How fortunate that we are that she would put herself out for his candy and toys.

The R.A. reserved his own excitement for Autism Awareness Month, being so fired up that he was up at 2 AM on April 1st.  Joyfully he heralded in the month with much yowling, clanging of Thomas trains, and clattering of his doorknob - "Wake up, beeyatches!  It's finally Autism Awareness Month!  We've got some aware-in to do and every moment is precious!"

When we finally removed the R.A. from his room he raced around the second floor as if he'd just had 17 cappuccinos followed by some cocaine chasers.  It was like he could not contain himself - "I must be in the servants' quarters.  No.  I mean I must be in my room.  No.  I must be in my sister's room.  No.  Servants' quarters.  No, definitely the bathroom."

He then decided to spend some quality time with me in the bathroom while I showered.  "Hmmm.  This must be Mommy Girl's towel.  I bet she would like it if I threw it in the toilet."  Fortunately I just happened to look out from the shower right before he gave my towel a bath.  Obviously the R.A. was miffed that I interrupted him.  He waved his hands in annoyance, caterwauling all sorts of alien insults about my mother and no doubt about his own mother.

The R.A. then resumed racing around the second floor.  Maybe it was some sort of alien holiday road race like their equivalent of Thanksgiving's "Feaster Five."  No, when my husband and I were chasing him it was more like the "Running of the Dopes."

When I finally departed the bathroom the R.A. then devoted a good chunk of time to closing himself in the bathroom closet and trying to climb the shelves inside.  My husband strongly urged him not to, several times.  The R.A. was not to be swayed and ultimately the bathroom was locked from the outside much to the R.A.'s fury.

Unfortunately, despite the fact that it was the first day of AAM, it is not a legal holiday and therefore there was work and school so we were unable to spend the day celebrating.  Or feeling very awake after such an early and invigorating morning.

Luckily the R.A. was still in fine form that evening.  Apparently part of the festivities include sporting events as in addition to the morning activities there is a night time road race because he spent a lot of time running around but in a set pattern, like a course.  The R.A. would race around the living room, stop briefly and turn off the living room light, run into the first floor bathroom, turn that light and the fan on, jump into the tub, flap and yowl.  After a short time the R.A. would hop out of the tub and head back into the living room where he would repeat the course.  I would have turned the living room light back on and the bathroom light and fan off so it would be all set for his new laps.

Another event was the climbing the sink and vanity challenge which happened after the road race.  This incorporated climbing but also included teetering on one's tip toes around the edge of the sink while hanging onto the bathroom mirror while softly yowling.   There was also the mandatory rage when prevented from continuing.

We are only on Day 2 of Autism Awareness Month and I am already exhausted.  Tonight we participated in the ceremonial "Wrapping of Oneself in the Shower Curtain While Showering" which was closely followed by the ceremonial " Toe Jumping in the Puddles Created  by Wrapping Oneself in the Shower Curtain."  I can only hope that the month culminates with vaporization.

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