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."

Wednesday, February 15, 2012

Grab Your Coat and Let's Start Walking

Yesterday afternoon I came home from work and headed up to the R.A.'s room to rouse him from a nap.  Although the R.A. feels compelled to wake others from sound slumbers, he very much resents being forced awake himself so when I entered his room he rolled away from me but first shot me a filthy look.  As he lay there, rubbing the sleep from his eyes he stopped, turned his face to me and said, "Fre fies.  Fre fies."

"Sorry, buddy.  No fries tonight," I responded and headed out to begin the "night shift" chores.

The R.A. did not find this an acceptable answer and proceeded to yowl in fury.  He yowled intermittently during his bath and really worked himself up after his bath. In addition to being hell on the listener's ear drums, the yowling also gives the R.A. a stomachache.  The more worked up he gets, the more air he sucks in and creates gas thus giving himself a stomachache.  The R.A. gets so frenzied that he can't be calmed down so you have to let him carry on which I gladly did after getting kicked several times.  As I left the room he tooted a couple of times.  Gas relieved he then started to calm down.

After the R.A. pulled himself together, he descended downstairs, somewhat, and spent the earlier portion of the evening hanging around  the stairs that lead up to the second floor.  He was caterwauling loudly (no doubt a scathing commentary about what will happen to those foolish enough to deny him french fries) while waving the Stick of Infamy as well as its new companion, the Stick of Not So Much Infamy. 

For Valentine's Day his grandmother got him one of those tubes that is filled with M & M's and has an M & M character on top.  She knows the R.A. will not deign to eat such slop as chocolate but thought he would like the stick.  Secretly I think my mother was hoping the tube would replace the Stick of Infamy.  The tube is smaller and does not have a pointy end making it not as potent a weapon.  Shockingly, her plan did not work out and now the R.A. is two-fisting his sticks.  I believe he quite likes the dramatic effect of two sticks being brandished wildly while he rants like a mad man.

While this rigorous diatribe was being played out, my mother and daughter were in the adjacent dining room for "Reading Time."  Each night after dinner my daughter has silent reading time.  After that her grandmother reads to her aloud.  Last night the R.A.'s verbal hijinks were so clamorous that Nana and granddaughter couldn't hear each other.  Periodically my mother would admonish the R.A. and yell, "QUIET!" to which the R.A. would respond, "QUIET!" in the exact same tone.  We don't know if he was parroting her or was in fact telling her to shut her own pie hole.

This cacophonous jamboree did not curb the R.A.'s desire for "fre fies."  Every time I went near the kid he would ask for french fries and every time he did I responded in the negative. The next tactic the R.A. took was to ask for the fries and then, to bring the point home, he would take me by the hand, lead me to the kitchen door, place my hand on the door knob and say, "Fre fies."  This little exercise meant he wanted me to go out to McDonald's and get the fries.

When this didn't work the R.A. decided he would have to take matters into his own hands.  He would go and get his coat and my coat, hand them to me and say, "Fre fies."  I would re-re-reaffirm that tonight there would be no french fries and put the coats back.  The R.A. must have been tired because we only did that 50 or 60 times.

But the R.A. was not to be deterred.  Seeing as I wouldn't help him out, he put on his own coat - inside out and upside down.  The hood was dangling down over his bottom, making the hood appear to be a bum hat.  He then stood by the kitchen door waiting to go.  Mind you the R.A. was also wearing his regulation backward/feet cut off footie pajamas, no socks, and no shoes.  But he was ready to roll.  He even had a small container of Pringles and a juice cup to sustain him on the journey. As the R.A. waited he rocked from side to side.  To be honest he looked like a bum on an Intergalactic Skid Row.

The rest of us remained in the living room, enjoying the relative quiet.  Periodically the R.A. would come into the living room, grab a Pringle from another container, munch it and look at me expectantly.  If he could talk I'm sure he'd say, "Are we ready yet?  I'm ready.  Let's go."

When I announced it was time for bed I thought he would have a fit because I did not get him his fries.  The R.A. did yowl furiously as he ripped off his coat and tossed it to the floor but did ascend to his room.  I then figured he would be up for hours, calling me out and cursing me and my entire kind.  But I guess between frantic pontificating, brandishing two sticks, and chasing me with coats tuckered him out because he was asleep within minutes.  The life of a dictator is not an easy one.

By this evening his craving for fries had not abated.  My greeting when I got home from work was "Fre fies."  As I typed this blog entry the R.A. kept shoving his coat at me, at one time tossing it over the computer screen. 

Tonight there is a fund raiser at Papa Gino's for my daughter's school so I will have to get him french fries.  Whenever we do take out we have to get him fries.  If we don't the R.A. will stand forlornly in the kitchen whimpering, "Fre fies."  It's very pathetic, like something out of "Oliver!"

Before I left to pick up the food I spent time blogging.  While I worked I did tell the overly impatient R.A. that tonight there would be fries.  He looked at me warily but sat in a chair across from me, waiting.  Occasionally he would get up, thrust his coat at me and demand, "Fre fies."  Finally, sick of my procrastinating the R.A. put on his coat (again inside out and upside down) and half pulled his hat on his head (backwards.)  He then stood next to me while glaring viciously.  I think if the R.A. could speak he would bark, "Who do I have to whack with the Sticks of Infamy to get some service around here?  Come on, Lady, get the lead out!"

Of course he wasn't pleased that we had to hit Papa Gino's.  And yes, our favorite Papa Gino's family was there.  As I was so concerned about the R.A. losing it in the restaurant I didn't even make eye contact with them.  I just wanted to get the Hell out Dodge.

By the time we hit the McDonald's drive thru I thought the R.A. was going to jump into the drive thru window and grab the fries himself. When the order came I reached around and handed him the bag of fries. He descended on it with all the fervor of an junky on heroin.  I didn't care.  I got to enjoy a "yowl free" drive home - I actually got to hear the radio!

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