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."

Monday, November 18, 2013

For Your Viewing Pleasure

Pretty much any endeavor for our family is a laborious exercise in frustration, exhaustion, and grit. Whether it's for business or pleasure, autism adds that special little bit of something that makes it more akin to a "Survivor Challenge" hopped up on steroids but without the fake boobs.  Yes, from the most mundane tasks like unloading the dishwasher to the heavy ticket undertakings like a First Communion, we come out the other side battered, bruised, and praying for vaporization.

So obviously, a "Quiet Night In" is anything but.  It's actually more like being held in a Siberian prison except most of those prisoners knew that there would be eventual freedom either through release or death.  I swear at times I wish we had guards in turrets that I could taunt and then have them shoot me.

This past Saturday night we attempted a "Quiet Night In."  The plan was to order out (Italian) and watch one of our DVR'd programs ("Marvel's Agents of S.H.I.E.L.D.")  On paper the plan looked good.  It appeared so simple and clean that even a pair of dopes like my husband and me should have been able to have pulled it off.

Nope.

We already knew, going into the project that there would be complications primarily due to the R.A.  The fact that we would be striving to eat AND watch television WHILE the R.A. was in the vicinity were major handicaps.  I mean, this wasn't our first rodeo.  But we have learned to adapt to our life situation.  And by adapt I mean to either have no expectations or really really low expectations concerning any and all plans.

For example:

I know that "Agents of S.H.I.E.L.D." started out with strong critical and popular reviews but within a few weeks there are grumblings that the plots are boring yet convoluted. If I lived a "regular" viewing life I might very well agree.  However, as I pointed out to my husband, we are always having to watch the show under combat conditions therefore due to  all of the R.A.'s antics we are really only getting to see maybe 1/4 of each show.  And that quarter program is pretty darn good.

Also worth noting is that the accepted rules of space and time do not apply in our house.  The typical one hour television program is actually 44 minutes long.  In our house it actually takes us 86 minutes to watch such an episode and that includes fast forwarding through commercials.  There is a lot of pausing, stopping, rewinding, arguing about whether we all saw a certain segment and, of course, loud yowlings.  The overabundance of clicker (television remote control for the uninitiated) action is directly related to the R.A.  During family television time the R.A.'s designated spot is directly in front of the TV, mere inches from the screen.  Mind you, this is only his preferred spot if it is not his show on the television.  It's bad enough he plonks his scrawny body (yet enormous head) right in the dead center of the screen, but he also vigorously jumps up and down and flaps for Britain thus ensuring that no one in the room is allowed to see the action on the TV.  To guarantee that the rest of family will be unable to follow the program the R.A. caterwauls like he is trying to communicate with the family that lives two houses down the street thus ensuring that not only can we not see the show we can't hear it either.  Any attempts by the family to move the R.A. from his spot or to quiet him are met with indignant rage.  Thus we must do a lot of pausing and rewinding because we miss so much. We then get to the point where we forgo the rewinding and soldier on, hoping that a particular scene wasn't too integral to the episode's plot.

Sadly it usually is.  Again, thank goodness for those low expectations!

This past Saturday night the R.A. was en fuego.  I mean, I am sure he even surprised himself with the level of naughtiness that he demonstrated.  If the R.A. were scored on his performance it would have been a perfect 10.

Here are the low lights:
  •  Per usual, our meal was persistently interrupted by the R.A. barking food demands at us.  One demand involved me hovering on a step ladder while holding a giant bag of Dum Dums while the R.A. leisurely pawed through to find his favorites. (Note: due to his "Dum Dum Problem" we have to keep the lollies in a high cabinet above our stove which means I am required to fetch said step ladder to retrieve them.  Additionally fun when the stove is full of large and very hot pots!)  Any attempts by me to hurry him along were met with incensed reprimands.  
  • When my husband arrived home from picking up our take out (yes, including the obligatory french fries and nuggets) the R.A. noticed that his father had also FINALLY picked up his longed for "Schoopees" (translation: Snoopy gummies.)  He crowed in delight and quickly wolfed down two packets and
  • Because he was so enthusiastic didn't bother chewing the gummies and promptly choked on them thus
  • Causing himself to throw up.  Fortunately the R.A. spends so much time vomiting he now knows to run into the bathroom and head for the toilet, sometimes even managing to throw up in the toilet as opposed to next to the toilet.  Further evidence supporting the theory that he throws up a lot - vomit does not diminish our appetites.  Cleaning up the vomit is not an abandonment of our meal but rather a delay.  Once the R.A. and the bathroom are squared away my husband and I return to our dinner and the program.
  • The R.A. interrupts us again to demand "Peehockles!" (translation: popcorn.)  Because he has just thrown up I am opposed to giving him more food, particularly rough edged food that does require thorough chewing.  My husband disagrees, mostly because he is very hungry and just wants a few minutes to eat.  I relent.  The popcorn is put in the microwave and the R.A. amuses himself by racing to and fro in front of the microwave while shouting, "Peehockles!  Peehockles!" as if it is the treat of the ages.  His father then explains that in addition to giving in to the R.A.'s demand we have also bought some extra time as the R.A. engages in his peehockle microwave ritual.  At least we know where the R.A. is and it doesn't involve Sharpie markers, extreme heights, or blocking a television screen.   Genius.
  • Once the peehockle is popped and ready, the R.A. eats approximately two pieces and resumes his requisite television spot.  We resume pausing, rewinding, craning our necks around the R.A., etc. 
  • The R.A. does take occasional TV breaks to remove all coats, jackets, and sweaters from a nearby coat rack and railing.  He piles all of them into a huge hillock on top of which he places his medicine ball and proceeds to roll over the mound.  Yes, we should prevent him from doing this as 1. it is dangerous to roll a medicine ball over an unsteady mountain of outerwear and 2. it isn't exactly the tidiest way to treat said outwear.  But we are sooo glad to finally be able to see and sort of hear (After all, the R.A. is still loudly caterwauling in the room) the show that we don't intervene. 
  • Much to our own peril.  For it is during this time that my husband and I both hear the sound of water tinkling.  We reacted at the same time and bounded over to the R.A. to discover him buck naked, standing on the medicine ball and weeing onto the floor while joyfully squealing.  
I think the R.A. sensed that he had outdone himself.  He was so pleased that he didn't even fight being hustled up to the bathroom and ultimately his bed.  His work was done and no doubt he was exhausted.

If the R.A. could have articulated it I'm sure he would have said, "Who's the real 'Earth's Mightiest Hero' now, beeyatches?"






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