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."

Monday, November 21, 2011

For whom the barf tolls

" I'm sure we will pay for it tonight.  It's all part of the R.A.'s dastardly plan." 

And so I closed my last blog posting.  It only shows how well acquainted I am with the R.A's M.O.  He attacked that very night.  The attack was swift yet messy.

Saturday night, after the parade, my husband and I had plans to meet friends for dinner.  This is an extremely rare occurrence.  I think there are more frequent occurrences of solar eclipses than occurrences of us going out socially.  Due to childcare issues (read - nobody will babysit the R.A.) we usually head out at 8 PM or later.  That way the R.A. is confined to his room/cell and therefore unable to terrorize his grandmother - too much.

That night I was all dressed, primarily in "grown up" clothes and was picking up the day's wreckage from my living room while waiting for my husband to get the R.A. settled in his room.  We were literally minutes from our short yet sweet furlough.  Suddenly I heard my husband bellow my name.  I sprinted up to the second floor to find my husband running from the R.A.'s room while holding a vomit covered R.A. out and away from his body.  He zoomed into the bathroom and deposited the R.A. into the bathtub where the R.A. proceeded to spew while simultaneously smiling

While the R.A. was entertaining himself by continuously throwing up all over the bathtub, my husband  cleaned his room and I changed out of my finery and into more barf appropriate clothing.  Once we were satisfied that the R.A. had indeed cleared his stomach of all semi-digested food items, my husband and I peeled his (R.A.'s) vomit-tastic clothes off him and then excavated the tub.  It's a testament to just how often the R.A. hurls that neither my husband or I were wigged out in the least by the sight or amount of vomit.  Once the tub was clean and sanitized, I told my husband to clean up and head out to the dinner and that I would stay with the R.A.  We did briefly consider cleaning up the R.A., putting him back to bed and heading out to dinner, only a few minutes behind schedule (we are that used to the "Barf-ah-pah-loozah" Extravaganza that we have a very efficient clean up system going on.)  I know it sounds uncaring to leave a "sick" child but despite the numerous occasions of the R.A. throwing up it rarely means he's sick.  On paper it would appear he has a sensitive gag reflex.  My husband and I don't buy it.  The R.A. is capable of vomiting on demand thus using it as a Weapon of Mass Destruction.  We were 95% sure it was a "Vomit of Vengeance."  But then we figured our friends would just judge us harshly as bad parents so we decided one of us should stay home.  I was always lousy at "Paper, Rock, Scissors."

So my husband headed out and I bathed the R.A. who was cheerful and positively pleased with himself.   If he was capable of human speech I'm sure he would have said, "Ha! Ha!"  Sometimes I am very happy he can't speak English.

Of course the R.A.  did not barf once for the rest of the evening.  He spent the night feasting on Pringles and white grape juice and working on battle plans i.e. lining up puzzle pieces in random formation on the living room floor.  He was smiling and laughing - an absolute delight.  The little stinker.

Saturday, November 19, 2011

Holiday Season Kick Off (or Eff Up)

Today was our town's annual Santa Parade and we decided to go.  We had no idea how the undertaking would turn out but sometimes we just shrug and say, "What the hell.  We'll give it a go" - much to the never ending delight of the other people attending any event we show up at.

We began this afternoon's big adventure by having lunch at a restaurant on the parade route.  As we are not that devil-may-care we did select one of four restaurants the R.A. will willingly patronize.  It is also one of only two places at which the R.A. will eat the fries so another bonus was no extra McD stop.

The dining experience began after the requisite 15 minute arranging and organizing ourselves at the table.  It commences with my husband and me assessing the best place to sit the R.A. so he has limited contact with other diners (Note: Corner booths - good.  Round tables in the middle of rooms -  bad.) Next we have to get our daughter settled which means making her move from her original seat.  (This is a perpetual point of mystery for us.  She has been dining out with the whole family for going on 6 years now but still doesn't understand the logistics portion of the endeavor.)  Often my daughter is resistant to being moved which means my husband and I have to use that fake "we're in public or we'd just bellow" jolly voice to cajole her to move while hissing under our breath.  Meanwhile the poor waitress is standing there with menus and place settings waiting for us to get our sh*@ together.  I always give the waitstaff a lot of credit.  I'm sure they are far from thrilled to get us in their section to begin with and then we're a problem before we've even ordered.

Finally we are seated.  I next throw a possible monkey wrench into the works as I have to use the ladies room. Immediately. Even before we've ordered.  My husband looks apprehensive at the prospect of bucking protocol (and being left alone at the table with the Dog and Pony show) but knows better than to protest.  Unfortunately there is a wait at the ladies room.  The waitress, who knows us well enough to want to get us the hell out of the restaurant as soon as possible, has actually stopped by the ladies room line to double check my drink order.  She too is interested in just getting our dining experience over with.

Usually (like there is such a thing with someone on the spectrum) the R.A. likes this restaurant.  Today he is "having a moment" and I return to the table to find him in tears (the R.A. not my husband although my husband did have that bright eyed look one gets prior to crying - a look we both get a lot.)  My husband did not know what the R.A.'s deal was.  He said the R.A. started as soon as I left the table.  This puzzled us as we did follow the most important part of the dining out procedure in that we ordered the R.A. his french fries before we even sat down to ensure that the fries would come as soon as humanly possible*.  (Ordering this way also means that any time any waitstaff or restaurant personnel comes near our table the R.A. barks, "Feh fye! Feh fye!" yet another reason we are big favorites of waitstaff.)  My husband immediately started crafting an escape plan, getting a little panicky because due to the parade, all surrounding roads were closed.  I myself was too tired and hungry after an action packed morning spent doing the "Turkey Pokey" and tip-toeing around the turkey to get worked up.  Fortunately the R.A. did calm down once the fries came and happily occupied himself by eating and periodically demanding "Kehsup! Kehsup!"

The meal finished without significant catastrophes (no one more surprised by this than my husband and myself) so we headed out for the parade.  Unfortunately it was a bit crowded which meant we would have to subject other parade goers to us.  We squeezed into a spot and waited, not so much for the parade but rather for how the R.A. was going to react to the parade.

Initially the R.A. looked with great interest at the people around him.  It was almost as if he understood the sense of anticipation and he wore an expression that said, "Now what?"

Once the parade started, his expression became, "What's this about?"  He would look at the parade and then look around at the people watching.  If the R.A. could talk I think he would have leaned over toward the nearest person and said, "I don't get it.  Why are we doing this and why are they doing that?"

But then, because the R.A. is a slave to the rhythm, the beat of the marching bands got him.  He spent the rest of the parade rocking from side to side in perfect rhythm to whatever song was being played as the parade passed.  His expression now became one of delight and he would look at my husband and me with huge toothless grins.

The only dicey part of the parade involved parade people handing out candy.  Whenever one would approach us it would look like the R.A. was putting his hand out to take the candy when actually he was putting his hand out to repel the candy (unless it was a lolly pop in which instance he would grab the lolly and make like he was going to tackle the candy giver for more.)  Sometimes the candy giver thought the R.A. was taking the candy and let go of the candy at which point the R.A. would smack the candy to the ground while wearing an expression that clearly said he was offended by such a revolting offering.  The candy giver would look puzzled and my husband and I would hastily explain that the R.A. had autism.  Adult candy givers sort of got it but child candy givers did not.  Saying the R.A. had autism had about as much meaning as if we'd said he'd had egg beaters - ???

Smacked candy delighted my daughter who would scramble down after it, retrieving it with the possessed smile of a child who rarely got candy.  "It's wrapped so it's OK if it was in the street" she explained to me.

Most of the time my husband had a firm grip on the R.A.'s hood as occasionally he made like he was going to bolt into the parade.  We had visions of him knocking over a section of a marching band and the entire brass section going down like dominoes ultimately halting the parade. I'm sure that would endear us to the town - "Awful, Incompetent, and Harrowingly Stupid Parents Unable to Control Small Child.  Ruin Parade.  Run Out of Town By Angry Mob Led By Fed Up Waitstaff."

All in all it was a really good afternoon.  I'm sure we will pay for it tonight.  It's all part of the R.A.'s dastardly plan.

*If my husband and I were more organized we would have called the fry order in before we even got to the restaurant to really make sure the fries arrived in that dictator friendly fashion.  Unfortunately we are not that organized and commend ourselves that the children have at least left the house wearing shoes - maybe not matching pairs and perhaps not even their own shoes but feet shod none the less.  If you knew how chaotic our house was you too would be proud of us for this accomplishment

Friday, November 11, 2011

Not Enough Hours in the Day

Latest entry in the R.A.'s Diary:

629th Day in the Month of Svvvvmkdiejflnfodj in the 6793rd Year of Our Kitchen God

The past few nights I have been burning the midnight oil as well as the 1 AM, 2 AM, 3 AM and 4 AM oils.   Unlike the home planet which boasts 62.3 hours in a day, the feeble earth day of a mere 24 hours is simply  unacceptable.  No wonder earth culture is so backward.  It's like the entire planet is on a permanent half day schedule and everyone knows that people slack off on half days because it's not a "real" day.  Since they don't have actual full days, nothing important is ever accomplished like harnessing cold fusion or inventing a peanut butter that doesn't stick to the roof of the mouth.  Of course we consider them the hillbillies of the galaxy.  All they need to do is to hoist the planet up on cinder blocks to complete the picture.

My caregivers insist on a set bed time, completely disregarding that I have a pressing agenda.  Why those two half witted dimwits don't get it, only the Kitchen God knows.  There simply and literally are not enough hours in the day for me to get it all done.  The Daddy Guy's bureau isn't going to climb itself and my trampoline jumping totals are way off.  I've also initiated a new project of climbing around the edge of the china cabinet on my tiptoes.  And don't even get me started on the invasion plans.  I am so far behind that I haven't sent back any Dum Dum reconnaissance models in weeks.

I simply do not understand my caregivers seeming obsession with sleep.  It is a waste of perfectly good hours.  Hours that they should be using to improve themselves.  Kitchen God knows they need every second they can get their hands on.  Therefore, although I do have a significant amount on my plate, I have decided a far more important task is to break them of this bad habit.  Sleep is nothing but indulgence and indulgence is a sign of being soft. 

The sleep deprivation exercises have been ongoing all week, commencing at about 3:30 AM.  Unfortunately my caregivers are excruciatingly lazy and sometimes it can take up to an hour of non-stop caterwalling and wall kicking before they rouse themselves from their nocturnal stupor and release me from my cell.  As they are extremely indolent, once we re-enter their bed chamber they climb back into bed which completely defeats the purpose of the entire exercise.  I then must engage in excessive trampoline jumping and bureau climbing in attempts to bestir them. Simultaneously I am yowling loudly.  These attempts to awaken them  are often futile.  I then must resort to pulling the Mommy Lady's hair and whacking the Daddy Guy with the television clicker.  These actions don't always result in getting them up so I am forced to tug on arm hair. 

The sleep deprivation project has not been easy as my caregivers are two of the biggest daffodils in the universe.  After only three days of the program they are reduced to tears, begging me to "Please be a good boy and go to sleep." Pathetic. I confess that most of the time their undignified behavior disgusts me.  No wonder I never make eye contact with them.