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."

Sunday, April 14, 2019

Now Where Were We?

Now that we’ve got the celebratory hoo haas about Autism Awareness Month over with, let me continue the saga of how the RA ended up in residency.  Like most old Norse sagas it does involve horned helmets, dragons, walking casts, and poop suits. Ok, maybe no horned helmets or actual dragons are in the tale but I think it could be argued that Autism is as frightening and formidable as any dragon if not more.

So now you’re like, “I get what a walking cast is, but what is this poop suit of which you speak?  Patience, gentle reader. Believe me, by the time I explain it you are going to wish I hadn’t.

Let me ask you a question.  Are you familiar with fecal smearing?  If not, get down on your knees right now and offer a prayer of glorious thanksgiving to the Kitchen God or deity of your choice.  If you wish to go on and live a happy carefree life unscarred by the mental images of fecal smearing, stop reading and go browse your Netflix account.

Fecal smearing is a delightful avocation that fully engages the child’s sensory and tactile experiences as well as providing an opportunity to work on his fine motor skills.  Basically the child poops and then uses the poop like finger paint. I know, fun right?

So in addition to keeping the RA safely contained in his lair, we now had the extra delightful challenge of fecal smearing.  Ok, I lied. It wasn’t delightful. It didn’t help that the RA was an overachiever and very thorough. He would strip, poo, and then get to work.  His preferred canvas was the traditional floor and wall but ever the avant garde artiste, when creating his floor work, his tool of choice was his toes.  Tip: if you want to get in some good smearing, toes are the way to go, especially if, like the RA, you are blessed with monkey toes. There is also the added bonus that when one uses one’s own tootsies, he can then march around the rest of the room leaving poopy paw prints.  The RA’s favorite medium, however, was his own body. After a smear fest he often looked like a brown Braveheart. And probably smelled like a medieval warrior.

For  reluctant astronaut-care, my husband and I worked different shifts, still do.  I work days and he works nights. When it came to taking care of the RA, we used to say that I had the night shift and my husband had the day shift.  The night shift was always a tough gig but with the advent of the RA’s FS, it became an onerous and grueling undertaking. I would put the RA to bed and pray he wouldn’t feel the need to create.  Then I would lurk in the hall outside his room listening for activity and also sniffing the air, hoping to head an episode off at the pass or at least catching it in the earlier stages so there would be less clean up.  Of course that little stinker (literally) was far cleverer than I and much faster. Once I realized the RA had outsmarted me, again, I would have to haul him out of his room, carefully avoiding stepping on/in his masterpiece and attempt to pick up and carry a wriggling, indignant, naked, poo covered artiste without getting part of said masterpiece all over myself.  Let me just say Sisyphus had a less impossible task than I.

After finally making my way out of his room, I would deposit a squirming RA into the tub.  Fortunately it was one of his favorite spots. I would bathe him and leave him to soake. Then, regardless of the time, I would have to get my daughter to sit with him while I cleaned up the masterpiece.  I couldn’t leave the RA alone in the tub for safety purposes. Yes, obviously a child should never be left unattended in a bath but the RA couldn’t be left alone because he always had to up the ante which in this case meant either bolting from the tub soaking wet to climb the China cabinet or climb the shower curtain and/or bathroom fixtures.  My daughter also had to monitor the poo situation while the RA lounged in the tub because while he wouldn’t be caught dead pooing in the toilet, the bath was a completely different story. When this happened my daughter would shriek for me. I would race into the bathroom and tussle a wet and slightly poopish RA from the bath. The RA protested not just his removal and interruption but my nerve at attempting to place him on the despised toilet.  

“Really, Mommy Girl?  On the abhorred toilet?  Are you not paying attention?  The toilet is my mortal enemy! Part of the reason we are in this literal mess is because I detest that thing!”

One of the best things about the endeavor was sometimes we engaged in the entire enterprise more than once in an evening!  Yes, it was as exhausting and as spirit crushing as it sounds. And I’ve given you the less traumatic version of the experience.

This kid got bathed so often it actually took a toll on his alien skin.  Once time my husband took the RA to a doctor’s appointment for some sort of unrelated ailment and the doctor remarked that the RA had remarkably dry skin for someone so young and he was prescribed special skin cream.  It’s a good thing that my husband took the RA that day because as the RA’s main night time spa attendant I probably would have barked, “Hey, you’d have skin that rivaled that of an armadillo if you took 37 showers and baths a week!”

Even though some could argue that we had finally found the RA’s “autism thing” (you know, that extraordinary talent that all people with autism have - think the movie “Rain Man”), the RA’s dad and I were not going to encourage this new artistic calling.  We had to come up with a solution to prevent the RA access to his art supplies. And fast.

Further adding to the merriment (and need for a quick fix) was the RA’s commitment to constipation and utter disdain for the toilet.  This often meant he “withheld” his bowel movements. When tucked in his lair at night the RA would un-withhold his bowel movement. And because he refused to go all day, the RA was holding on to quite a supply of “material.”  My husband and I were amazed that a body so small and scrawny could store so much poo. I swear there are water buffalo out there that couldn’t compete.

Let me tell you, a fun night of pooing, painting, and bathtub frolics really energizes a reluctant astronaut.  So despite the fact that I was utterly debilitated, the RA was fully reinvigorated and ready to party the night away which in this case meant jumping up and down on my bed like a lemur who just ingested sixteen gallons of espresso accompanied by seven dozen extra sugary jelly donuts while yowling manically at the top of one’s lungs.  There’s nothing like a satisfying session of fecal smearing and three showers to get the blood going in the wee hours of the morning.

We had to find a solution.

Who will win in the Un-Great Battle of the Poo?  Will the new “Napoopleon” emerge flappingly victorious?  Or will his harried yet completely incompetent parents stumble across a “Waterpoo” and finally halt the RA’s nocturnal destructions? Or will they just finally die of exhaustion in the attempt?

For the answers to these and other seemingly unrelated and certainly uninteresting questions, stay tuned!

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