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, March 26, 2019

How Did We Get Here, Part I

In my last post I alluded to various factors leading to the RA’s residential placement.  So many to choose from! I could have a separate blog just for that: “The Great Escape - RA Edition” or “The RA’s Liberation from Dopeville” or “ It’s Hard to Believe But Those Two Are as Dumb as They Look and If I Have to Live with Them Another Second I Swear I am Going to Disembowel Myself with a DumDum Which in This Instance Would Be an Aptly Named Tool for Suicide (or Matricide/Patricide.”)

As you may or may not recall, the RA was an amazing escape artist.  Harry Houdini would be envious. For his own safety we had to adapt his room.  Initially this involved removing the furniture because he used it to perform death defying acrobatic feats that would have made the Flying Wallendas go, “Damn!  That’s too crazy even for us!”

So except for the mattress, we removed all of the furniture.  Then, so that we could have a visual on him, my husband and his dad built a half wall with a locking cottage door down the middle of the room.  One side had the mattress, stuffed animals, some Thomas trains, and a trampoline (a typical bedroom staple.) The other side had the bureau, a rocking chair and more toys.  Essentially we created a very large play pen.

This penned in section of the room was also a safety measure.  The RA was so active and so devoid of fear yet possessing a plethora of naughtiness, that he had to be monitored constantly and by constantly I mean one had to literally stand next to him which didn’t necessarily prevent him from engaging in undesirable activities but did mean his caregiver was physically close enough to limit the amount of destruction or at least get him down from the roof in a timely fashion. So when a person was “on duty” it was impossible to do anything else like laundry, clean the bathroom, use the bathroom, engage in daily hygiene, sleep, etc.

When the RA was a day student, my husband would get him off the school bus and pass him off to his after school ABA counselor who would work with the RA for two hours.  While that was going on my husband, who works second shift, would head into work. My mother, who was also unfortunately incarcerated with us in the POW camp, was also at home.  A grown up family member had to be at home while the ABA counselor worked with/tormented the RA. I was at work and would literally race home, Grand Prix style, to try to make it before the counselor left.  If I didn’t make it in time, the counselor would deposit the RA into his room because he was too much for my mom and daughter to handle. I know, shocking, right?

Ever the resourceful little imp, the RA was not going to allow lack of hard furniture to impinge upon his gymnastic endeavors.  One day while at work, I received a frantic phone call from my mother. The counselor had to leave the session early so she put the RA in his room.  My mother was panicking because somehow, yet not surprisingly, the RA had escaped from his room. Myself now panicking, I yelled something incomprehensible at my boss (This is true.  The only thing my boss could make out was my son’s name. She was fairly well informed about him and assumed something crazy and possibly awful had gone down.) and literally ran out of the building.

My commute is approximately 30 minutes, on a good day.  If traffic is bad that can add 15 to 30 minutes. Let’s just say that day I made it home in under 30 minutes.  We won’t explore the details of that little miracle.

When I got home my mother anxiously explained that she was in her first floor bedroom when all of a sudden the R.A. appeared outside her door.  My daughter tried unsuccessfully to corral him back into his room but he just was not that interested. He helped himself to some snacks and disappeared back upstairs.

“I think he’s in your room now,” whispered my daughter.

As I slowly proceeded up the stairs I couldn’t help but think this must be what it’s like when a rabid raccoon gets into your house.  I wished I had a tranquilizer gun. Not so much for the RA...

My bedroom was dark.  I could hear the RA breathing as well as some minimal movement but didn’t see him.  I called out his name and he responded, “I tuck” which roughly translated means, “I’m stuck.”*

Following the sound of the RA’s voice, I now noticed two glittering eyes in the darkness.  The RA was sitting on top of a television that was on top of my husband’s bureau, a favorite perching spot - for the RA, not his dad.  Instead of “Elf on the Shelf,” my husband called it “Gnome on the Bureau.” I referred to it as “Gargoyle on Notre Dame.”

Once on his perch, the RA is indeed stuck.  I confess that there have been times I have left him up there for a few minutes because:

I knew his location 
I knew he couldn’t get down and head somewhere else
I knew he wouldn’t fall due to his freakish defiance of the laws of gravity agility 
That’s how badly I had to use the restroom

I needed to examine the scene of the crime so I left the RA where he was and ventured into his room.  The cottage door was still closed and locked. I opened the door and went inside to investigate. Propped up next to the half wall was the RA’s mattress.  He had used it like a ramp. Placing the mattress at an angle, he then must have run up the mattress and hopped over the wall to freedom. The RA didn’t know what a napkin was for but he already had an advanced understanding of physics.

With this new development, we were officially up the creek.  This meant there was no safe spot to put the RA. We were also terrified he wouldn’t just roam the house tagging walls with black Sharpie graffiti art or helping himself to snacks, but that he would bolt from the house.

So the height of the wall was extended.  We thought this newest home improvement required the skills of a professional so we called in the services of my cousin’s husband who worked in the building trade.  He and another cousin not only extended the wall but also covered over the windows and the window sills with poly glass because we were afraid the RA would escape out a window. (And a special “You’re most welcome!” to our neighbors who no longer would be subjected to naked RA window time.  No one can accuse us of not being thoughtful neighbors.)

With the RA’s room fully secured we could now relax.  But even we weren’t so dim as to think everything was fine.

In our next installment you will learn more.

That is if you have the guts.

Or at least lots of free time.

*Full Translation: Where the hell have you been?  I’ve been stuck up here for hours. Don’t just stand there like a drooling idiot!  Get me down immediately if not sooner! Oh my Kitchen God, what is wrong with you?!”

No comments:

Post a Comment