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, April 26, 2019

When We Last Left Our Heroes...

When we last left our magnificently hapless heroes, they were in the throes of a gargantuan panic that threatened to make them even stupider than they were…

To recap:  The RA had discovered a new love of artistic expression using only very specific natural and organic compounds.  Our story continues…

Fortunately, just around this time my husband caught a documentary about a family that had several children on the spectrum. (My husband said he found it comforting because after watching it he felt we were the lucky ones.)  A few of those children had issues with disrobing so the parents would buy the kids footie pajamas and then cut the feet off and put them on the kids backwards so that the kids couldn’t get at the zippers. Oh my Kitchen God!  Sheer brilliance! We immediately copied this idea. And it worked. We were elated.

For a couple of days.  

Don’t ask us how, but the RA, despite the zipper now in the back, managed to unzip himself.  At first we thought maybe the issue was the PJ’s, something weird with the zipper. To make certain we tried another pair.  And another. And another, etc. (By about the third pair, intellectually we understood it wasn’t the PJ’s but we weren’t ready to admit that because then it meant we had to find another solution.)  All had the same result. We were devastated. Why couldn’t he use his powers for good?

Then my husband got the bright idea of cutting holes in the PJ’s in the back collar on each side of the zipper.  String would then be threaded through the holes and the zipper so that the RA could not unzip himself. Sure, it meant that every morning we had to cut the string like one does on a slab of pot roast but it worked!  

For a while.  

One morning we discovered another poo-tacular masterpiece and its birthday suit clad artist.  Did he break the zipper? Too pedestrian a solution. How dare you insult the immense intellect of an evil genius!  No. Examination of the PJ’s revealed zipper and string still in tact. Nothing was torn. That little stinker (again literally) had managed to contort his wispy little frame out of his PJ’s via the neck hole.  Yes, he was that skinny. For a visual think ginormous round lollipop on a very thin stick. For authenticity add hair to lolly and include many random cowlicks. May I introduce you to the most cunning future evil dictator, the RA?

My husband and I were crushed.  We had gotten spoiled with our sometimes up to three hours of uninterrupted sleep a night.  Now it was gone. We actually wept.

The RA’s dad was not going to easily surrender our hard won slumber.  In a desperate yet determined burst of energy, he took to the internet to see if there was anything we could do.  It was then that he discovered that the RA’s latest thing actually had a name and was a condition that wasn’t unique to him.  Ah, good old Autism. It always makes sure to keep the magic alive with its many surprise developments. Unfortunately none of these little gifts are ever very good or what you’ve always or ever wanted and what’s more unfortunate is that they never come with receipts.

Through his research, the RA’s dad discovered there was a company that actually manufactured special suits for children that prevented them from disrobing because the suit was worn over clothing. The suits looked like those surfer wet suits that go to the knee.  They zipped in the back. There was also a more secure version that had a snap similar to those on fanny packs but over the zipper.

SOLD!

Being well acquainted with the RA’s diabolical genius, we went for the bad ass version.

This special article of clothing was fondly christened the “poop suit.”  For double protection it was worn over a pair of backward footie-less pajamas.  Anytime the RA was placed in his lair, at bedtime or during the day (for a caretaker emergency like needing to use the bathroom), he was kitted out in this special ensemble.  It was very much function over style. And it worked great.

For awhile.  

One morning we woke to find Pablo Poopcaso, covered from head to toe in poo, had smeared another magnum opus.  This time our grief was so acute we actually keened.

My husband contacted the company where we had purchase the poop suit thinking there was probably an upgraded version.  The very nice Canadian lady cheerfully told my husband that there was indeed another more secure edition. She then began describing the suit we currently had.  My husband let her finish her spiel and then said that was the suit we owned. The nice Canadian lady was pretty gobsmacked. “But that’s our most secure and most high end suit,” she sputtered.  My husband asked what other families did when their children were able to liberate themselves from that suit. The nice Canadian lady said she didn’t know because nobody had ever managed to free himself from the suit.  My husband said the nice Canadian lady had immense difficulty wrapping her head around the whole thing. By the end of the conversation her mind was so completely blown that she pretty much kept muttering, “But I don’t understand.  Nobody ever gets out of that suit.” My husband finally had to hang up on her in mid mutter.

There goes the overachieving RA, again.  Doing something that no one in the ENTIRE continent of North America had ever done.  At this point I was so distraught that I told my husband I envied parents of dumb kids.  Why did the Kitchen God curse us with a genius and an evil one at that? What I wouldn’t give for a paste eating underachiever!

Again, my husband was not going to give up without a fight.  We had come too far to give up those hard won two and a half to three hours of almost uninterrupted nightly sleep.  It was our darkest hour and not just because it was literally in the middle of the night. As Winston Churchill spoke so inspirationally during Britain’s darkest hour, so too did we:

We shall defend our sleep, whatever the cost may be (as long as it’s not too pricey), we shall fight in the bathroom, we shall fight on the poopy ground, we shall fight on top of the China cabinet and on the upstairs bannister that is missing a few slats due to the RA’s removing of them, we shall fight on top of the TV that is on top of the RA’s dad’s bureau; we shall never surrender.

Or at least we would die trying which at this point I think my husband and I were not completely adverse to because at least we would finally get in a decent nap.

It was while possessed of this fighting spirit that my husband came up with another idea.  Why not modify the poop suit? He sketched out a few ideas and consulted a professional tailor.  Together they devised the Poop Suit 2.0, a magnificent creation that blended aeronautical technology with Arkham Asylum inspired super villain straight jackets.

Basically the tailor sewed a collar over the poop suit’s collar through which we thread a shoelace.  The shoelace was then thread through an opening in the zipper to which was attached a tiny lock. And voila!  The Poop Suit 2.0 (patent pending.)!

The first time we put the RA in the PS 2.0, he was bemused.  He also gave us clearly patronizing looks, “What’s this? Oh, my naive, dim, dolts.  Will you never learn? How long do you think your precious little suit will last?”

After a couple of weeks his arrogant smile turned into a frustrated sneer.  It appeared that the RA had met his match. Now our biggest foe was the key which we sometimes misplaced.

Not one to be bested by his imbecilic parents or a mere piece of clothing, the RA did have moments of revenge.  He had figured out that when his poo presented as a solid stool he could somehow finagle it down his PJ leg and out that way.  That’s true dedication and a real never give up attitude. Fortunately, due to the massive amounts of laxatives and stool softeners pumped into him, those occasions, which we referred to as the  result of doing the “Poop Suit Boogie,” were rare.

Unbelievably, we had conquered the nighttime poo painting workshops.  Believably, no one was more surprised than we were. Well, probably the only other person was the RA.

Oddly enough, poop masterpieces were not our only nocturnal challenge...

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