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, February 24, 2013

The Barber of Seville on Crank



I don't think they have hair on the home planet.  I don't think they have hair on their heads or arms or faces or any place.  No doubt the amount of hair that we earthlings have re-enforces the R.A.'s opinion that we are nothing more than unintelligent apes that have a strange aversion to Sharpie markers which further contributes to his conclusion that we are illiterate half wits.

Unfortunately, as part of his "assimilation" as an earthling, the R.A. had to have hair.  But remember, the R.A. was not interested in this earth mission and really didn't pay attention at the pre-mission briefings when they covered earthling physical characteristics.  Therefore he didn't quite get the earth hair thing right.  He kind of muffed up eyebrows in that despite having such dark hair on his head, his eyebrows are extremely fair, sort of like a reverse Marilyn Monroe thing going on.  The result is that it lends to an expression that looks perpetually surprised, even when he's charging at his victim while yowling in fury - "YOWL! YOWL!  I am enraged despite the fact that my face says that I am bemused!"

And then there's the hair on his head.  Well, it isn't so much a head of hair as a collection of cowlicks.  It grows at unnatural angles.  The only way we've managed to tame it is to give him a baldy sour haircut.  For those of you who don't know what that is, it's like somebody looked at some poor slob in a run of the mill crew cut and denounced him as a long haired hippy and gave him a real deal short hair cut.  Basically a baldy sour is a crew cut on steroids.  It's more like an illusion of hair.  Despite such a close haircut the R.A. still has weird patches of hair.  Even his hair is defiant. 

I know this will be hard to believe but we don't take the R.A. to a barber.  My husband and I reckon that halfway through the session either DSS or the police would be called and at that point we would probably be willing to go with whatever entity would take us.  Instead the R.A. gets a good old fashioned home shearing.  My husband is our very own at home barber.  Luckily the R.A. is extremely mellow so it's a simple procedure. 

NOT!

An R.A. haircut is something that we dread like typhoid fever.  Okay, more than typhoid fever.  Typically, two to three weeks prior to the actual haircut I will survey a very scruffy R.A.  His hair has outgrown the baldy sour and is shooting out in all sorts of ways that defeat the laws of gravity.  I will casually say, "Looks like someone needs a haircut."  My husband will issue a noncommittal grunt. The next day my husband will then appear with a freshly shorn head and with wide eyed false innocence say, "Well you said someone needed a haircut" purposefully misunderstanding that I meant the R.A.

More procrastination ensues and a couple of weeks pass.  By now the R.A. is going around with perpetual hat head despite the fact that he is not wearing any hats.  Finally my husband's mother will remark on the R.A.'s hair and then my husband will grudgingly accept that it is time to tackle the R.A.'s hair.  But not without a lot of whining and sulking.

Because, literally, tackling is involved in the R.A.'s haircut.  This is not easy to do while wielding an electronic razor.  But I give the R.A's dad props.  He has mad Viking/Jedi/Ninja/Sweeney Todd barber skills.

The Day of Reckoning will come.  In a dejected yet resigned tone, my husband will announce that it is time to cut the R.A.'s hair.  This announcement is made out of earshot of the R.A.  One never wants to tip off the enemy.  It cuts down on the success rate of coaxing the enemy into the bathroom.

Prior to the "procedure" my husband readies the equipment and the area.  I doubt most operating rooms are prepared with such precision.  My husband has learned the best offense is not having to stop and search for the proper razor attachment while clutching a rabidly wild R.A. between his legs to prevent his escape.

Then it's time for the Big Show.  Usually by halfway up the stairs to the bathroom the R.A. is wise to what is going on.  He's no fool.  The R.A. struggles for freedom, yowling and crying.  All we need is for his sister to look out from in between the staircase bars and call, "Dead man walking!" and it would be like an execution scene from an old James Cagney film.

Glasses askance, sweating profusely, my husband wrangles the R.A. into the bathroom.  He hands the R.A. a lolly.  Initially the R.A.'s lip curls in disdain and he looks like he is going to toss it back in his father's face.  But then he thinks better of it (why waste a good Dum Dum?) and unwraps it, his vicious caterwauling temporarily paused.  My husband moves in for the kill.

Only to be nimbly deflected by the R.A. 

The Dance of the Razor begins.  It is a wild, almost feral dance with much noise and drama.  My husband is begging the R.A. to calm down and let Daddy cut his hair.  The R.A. yowls his refusal.  There is twisting and turning, wrestling and wrangling.  And the tears!  Mostly my husband's.  Oh the inhumanity!

At this point my husband calls for backup.  I can only pretend I can't hear his bellows for help for so long before I have to head up.  It's usually when a neighbor appears and asks if everything is all right that I know it's time.  The bathroom looks like the Hindenburg passed through but we've got more charred carnage.

By this point the R.A. is doubly enraged because not only does he have to endure the indignity of a haircut but there is hair all over his Dum Dum.  The lolly has also made his hands sticky which means his hands are covered with hair causing him much distress.

I get to subdue the R.A. so that his dad can concentrate on more delicate areas of his head such as around the ears.  This involves me sort of sitting on the R.A. while crooning about what a good boy he is.  The R.A. spits hateful insults back at me as well as wiping his hairy and sticky hands all over my arms.

"We're almost there!" my husband pants.

"Hurry!  I can't hold on much longer!" I choke back, my trachea clogged with the R.A.'s hair.

Finally and blessedly, it is done.  My husband and I are spent but the R.A., consumed with fury and brandishing a furry Dum Dum, roars, rages, paces, pats his almost bald head, and scratches.  Oh, yes.  The cherry on the cake of this little project is that the R.A. is allergic to his own hair.  There is no time for us to rest or regroup.  We have to hustle the R.A. into the shower as soon as possible and rinse off the excess hair as well as his lolly.  The lolly is more of a challenge than the body.

Fortunately the R.A. does like his showers and his protests are more out of a sense of duty than agitation and he does allow us to deposit him into the bathtub.  He still snarls at us any time we go near him but there is no chinning.  In the shower the R.A. paces while rubbing his head as if to say, "My beautiful raven locks.  What have you done to them?"  Warily he permits us to bathe him and wash his head as if he considers it a necessary evil.

Admittedly these are longish showers as it is also a break for us.  When the R.A. commences climbing the bathtub fixtures and wrapping himself in the shower curtain, we know it's time to take him out. Well, at least 10 to 15 minutes beyond the climbing and wrapping.

I read somewhere that there are sheep shearing competitions.  It's too bad my husband has such bad allergies because I think he could have been a contender.

Monday, February 18, 2013

I am a great artist and I know it. The reason I am great is because of all the suffering I have done. (Paul Gauguin)

Updated Quotation: I am a great artist and I know it. The reason I am great is because of all the suffering I have caused. (The Reluctant Astronaut who further declared Paul Gauguin was worthless and weak and should have been tagged for vaporization but unfortunately was already dead - the coward.) 


The R.A. is a tortured artist (come to think of it, he is actually a "torturing artist.")  His preferred medium is Sharpie marker on hard wood floor although occasionally, when feeling frivolous and a certain joie de vivre will use a white wall as his canvas.  The R.A. is tortured because his artistic genius is not celebrated but rather met with hostility by the ignorant masses (his parents.)  Unfortunately his public (us) feels like we are suffering for his art.  As with everything concerning the R.A. it isn't so much art as another tool of destruction just more colorful.

The R.A.'s art is also fraught with ritual, like so many aspects of his life.  His artistic endeavors go something like this:
Step 1: Despite his parents having gone over the house looking for Sharpie markers like a HAZMAT team at a nuclear power plant, the R.A. procures a Sharpie marker.
Step 2: The R.A. unleashes his full artistic fury on the largest and most visible floor space.
Step 3: The R.A. is discovered in mid artistic flourish by one of the meddling Philistines (a parent.)
Step 4: Yelling commences.  The Philistine yells, "NO!" upon seeing the further desecration of the hard wood floor.  The R.A. yells, "NO!" because the Philistine has the temerity to interrupt yet another masterpiece.
Step 5: The traditional "Sharpie Marker Wrestling Match" ensues at the end of which there is more Sharpie marker on the participants than on the floor.
Step 6: Upon being deprived of his instrument the R.A. unfurls a tapestry of alien curses which addresses his frustration at our small mindedness and unreasonableness.  Again.
Step 7: Vicious chinning commences.

This past Saturday the R.A. outdid even himself when it comes to his artistic relentlessness.  I was in the second floor bathroom having a swell time cleaning and disinfecting.  The R.A. was in my bedroom, supposedly watching one of his shows.  I never leave the R.A. unmonitored for more than a couple of minutes at a time because that's all the time he needs to climb something inappropriate or color something inappropriate.  So after a short time I did check on the R.A. and discovered him "creating" the heck out of a portion of my floor with a black Sharpie marker.  Following proper protocol we engaged in the sanctioned "Art Ritual" (refer to Steps 1 - 7 above.)  After Step 7 I did a sweep of drawers and shelves to make sure there were no other Sharpie markers.  Determining there were none, I departed back to the bathroom for some more enjoyable disinfecting.

A few minutes went by and I returned to the bedroom to find the R.A. once again coloring the floor with yet another black Sharpie marker.  I couldn't believe it as I had engaged in Sharpie recon.  The R.A. and I once again participated in the "Art Ritual."  I double-double checked the area for rogue Sharpie markers and finding none, headed back to the bathroom.

After a few minutes of some delightful cleaning, I went back to the bedroom to discover the R.A. vigorously coloring the floor with a green Sharpie marker.  What the heck?  Not only had I double checked the parameter, but now he was pulling out colored Sharpies!  Where did he get that?  I didn't even know we owned colored Sharpies. We engaged in the "Art Ritual."  This time, after re-double double checking the area for markers I remained in the room to see if I could ascertain where the R.A. was keeping his stash.  We both tried to act casual, as if we weren't carefully observing each other - "Just chillin'.  No big deal.  Just hangin.'"  After several minutes of attempting to look at each other while not looking like we were looking at each other, I returned to the bathroom.

Shortly after I went back to the bedroom to see the R.A. on the floor with an orange Sharpie marker.  Seriously?  Where the heck are they coming from?  We then partook of the traditional "Art Ritual" which I must admit that by this point we were both extremely frustrated therefore the wrestling and yelling were a bit more energetic than usual.

After Step 7, I lurked outside the bedroom and peeked my head in the room hoping to catch the R.A. in the act of obtaining a Sharpie.  The R.A., sitting in the middle of the floor sans marker, looked right at me, his expression saying, "Oh, hello.  How nice to see you.  May I help you with something as I sit here doing absolutely nothing remotely naughty?"  We repeat this newest interaction several times.  Either the R.A. has run out of markers or I am, in fact, as dumb as I look.

Apparently I am as dumb as I look because a few minutes later I discover him hard at work coloring the bedroom floor with a pink Sharpie marker.  This time all heck breaks loose as we had really had it with each other.  There's yelling, yowling, wrestling, wrangling, and intense chinning.  I'm sure the Battle of Bull Run was more sedate.

Thankfully, at this juncture my husband interrupts the scrimmage as he needs my help shoveling our blizzard attacked driveway.  I gladly deposit the R.A. into his secure room.  The R.A. looks like a psychedelic trip's version of a colorful yet angry Leprechaun.  It goes to show you how spent I was because the prospect of shoveling two feet of snow was a welcomed break.

Neither my husband or I have been able to determine the source of the Sharpie markers, especially the colored ones.  We both swear we've never purchased colored Sharpies.  They must be from the R.A.'s war arsenal.

The good news is that I believe I have seized all the Sharpie markers as lately the R.A. has been relegated to pens and pencils which he does not use on the floor.  Obviously this is because their marks are too easy to remove from hard wood.  Today, however, he was using a yellow highlighter.  He did not use this directly on the floor but rather this was utilized primarily and vigorously on paper, any paper he could get his hot little hands on - scrap paper, bills, school reports, envelopes, work reports, and curiously, his socks.  My theory is that the R.A. resorted to these items because the yellow doesn't show up very well on hard wood floors.  What good is artistic genius if one can't see it?

Our house is resplendent with the R.A.'s creations and the creative process is never ending.  We have stopped being so fussy about our floors and walls opting to put off re-doing everything until the R.A. finally outgrows  this "Sharpie Marker" phase.  I figure we'll be tacking the floors and walls in 20 to 30 years.

*Update: While writing this post my husband and the R.A. were up in our bedroom "Watching TV" (euphemism for my husband napping and the R.A. teetering dangerously on unsteady objects).  The R.A. punched my husband in the calf and demanded juice.  When his dad returned to the  bedroom he discovered the R.A. attempting to hide a black Sharpie marker behind his back.  Apparently replacement munitions have arrived from the home planet.

Sunday, February 10, 2013

I Don't Have a Problem. I Can Stop Anytime I Want


I may have mentioned, in passing, the R.A.'s slight interest in french fries.  Okay.  It's a bit more than a "slight interest."  Let me put it this way, if they could find a screenwriter fluent in Yowlish, they would make an afterschool special about the R.A.'s fry addiction.

It had dissipated for a short time but now it's back full force plus eleven.  When I come home after work the R.A. flies into the kitchen demanding, "Feh fies!  Feh fies! I want feh fies!"  Unfortunately I have the temerity to not have the demanded fries seeing as I've just walked in the door straight from work.  I respond "No french fries."  The R.A.'s response is more adamant and he now hollers, "I want feh fies!" I clarify with, "No french fries.  French fries go bye-bye."  The combination of no fries and my insolence sends the R.A. over the edge. This is unacceptable and thus I am the lucky recipient of the R.A.'s righteous wrath.  He caterwauls a stream of alien obscenities, charges at me, stops abruptly and grabs my left hand.  The R.A.  proceeds to aggressively chin my left hand.  He then steps back and assesses me as if saying, "Well, what about now?" I apologize and repeat that there are no french fries.  We then repeat the whole procedure.  Often two to three more times.  Finally, at the actual conclusion of our ritual, the R.A. stops chinning my hand, shoves it aside and shoots me a look chock full of disgust.  This is sort of our own quaint version of "Groundhog Day" in that we go through this pretty much every weeknight.  He yowls furiously for fries and I never have them.  One of us needs to change our approach to this situation.  Seeing as he's so flexible my money is on the R.A.

A short time later, usually while I am frittering away my time partaking in frivolous activities like getting my daughter's dinner or washing dishes, the R.A. will re-appear lugging my pocketbook and huffing, "Feh fies."  By now he has determined that since I had the audacity to arrive home sans fries I can haul my fat fanny out and pick them up, immediately if not sooner.

Surveying him and his borrowed accessory I  say, "No."  The R.A. pauses and then decides I am too dimwitted to understand what he wants. He then attempts to force my hand to grab the pocketbook's handle.  This action can be additionally challenging if my hand is holding a cooking utensil or covered with soap suds.  We engage in a bizarre hand wrestling match as the R.A. tries to foist the pocketbook on me and I vigorously rebuff him.  All the while we are yelling at each other:

"I want feh fies!"
"No!"
"I want feh fies!"
"Feh fies go bye-bye!"

Finally, and at the end of his rope, the R.A. will spike the pocketbook at my feet or more often on my feet, yowl furiously and grabs my left hand.  He then chins my hand with unrelenting fury.  If I am fortunate enough to have been in the process of washing dishes my hands are sudsy and therefore too slippery for him to get in a good chinning.

The R.A. is nothing if not a master of strategy.  Lately he has re-assessed the situation and determined that he has underestimated the level of my stupidity.  He has decided the problem is actually that I am too dense to fully comprehend his wishes.  For the past few nights, following our pocketbook wrangling, he has later appeared with my wallet.  The R.A. tosses it at my feet and caterwauls slowly and clearly, "I want feh fies."  He looks at me with an expression one usually reserves for a particularly slow circus animal  Then for emphasis he will jump up and down while flicking his fingers in my face.  This loosely translates into, "Get it now, dumb ass?"

Unfortunately, for all of us, I must refuse his request.  My refusal elicits an explosion of alien curses.  One does not have to be fluent to know that what has been yowled involves insults concerning my mother, my mother's mother and my mother's mother's mother.  Of course while this is occurring my left hand is being fiercely chinned.

Typically, once we've gone through the pocketbook and wallet scenarios a maximum of three times the R.A. eventually accepts that the fries are not forthcoming and proceeds to  our next favorite nightly activity - climbing the china cabinet.  This past Thursday evening, however, the R.A.  must have been jonesing pretty badly for those salty fried bits of goodness.  I was sitting and attempting to eat my dinner when the R.A. appeared next to me, dragging my pocketbook.  He must have been extremely desperate because he abandoned the french fry protocol.  While I continued to try to eat we engaged in some rousing pocketbook wrestling.   Finally I abandoned eating, wrangled the pocketbook from him and put it back where it belonged.  After several minutes passed the R.A. returned and tossed my wallet onto my dinner plate and half consumed dinner while yowling, "I want feh fies!"

To his dismay I refused, removed the wallet from the plate and continued eating. The R.A. was furious.  He grabbed my left hand and chinned it.  Unluckily for me I eat with my left hand so I was forced to bumble through the rest of the meal using my right hand.  It was not a pretty sight for various reasons.  But what I have learned while on this job is to eat whenever you have the chance regardless of the circumstances. Dinner time at my house is a lot like what WWI soldiers went through in the trenches minus the caterwauling.  We have hand to hand combat and everything.  The Kitchen God knows some nights I wish the Red Baron would come and put me out of my misery.

Following dinner, while I was in the kitchen cleaning up, the R.A. thundered into the room, yowling and howling like a mad man.  He had gotten a hold of a blue marker and colored his forehead and right side of his face.  The R.A. descended upon my left hand and while chinning he cried, "Feh fies! I want feh fies!"  It was like being attacked by a tiny yet insane Braveheart: "They can take my nuggets but they'll niverrrr take my french fries!"

I have a fear that as his addiction grows so will his desperation.  I have visions of him hot wiring my car and knocking over a fast food restaurant:

"What can I say, Officer?  It all happened so fast.  One minute I heard this odd howling but nobody was there and the next minute there he was, leaping over the counter.  He sort of looked like, I know this sounds weird, but like Braveheart in what looked like backwards footieless footie pajamas.  I don't think he was from around here because he was screaming but nobody could understand what he was saying.  My manager tried to give him the money but he threw it on the ground. Then he grabbed my manager's hand and well, sort of kept stabbing it with his chin.  I think he broke his hand.  Then he grabbed a bag of fries and jumped out the drive-thru window.  It was horrible!"

I'm seriously considering calling the Betty Ford Center.  I wonder if they have anyone on staff who speaks Yowlish.