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, December 27, 2013

Party On, Duds!

Recently my family attended a Christmas party hosted by my husband's cousin.  You know a party is going to be epic when you pull up to the house and the R.A. roars from the back seat, "No, please!"

Despite his reluctance we managed to remove the R.A. from the car.  I then dragged him up the rather long and steep walkway.   Ever the multi-tasker, while we lumbered up the walkway the R.A. simultaneously attempted to dig his heels into the pavement, wrench himself out of my grasp, chin my hands viciously, and holler with rage.  All part of his demure announcement, "I say, gentlemen and good ladies, we are here.  Let the festivities commence.  Now bring us some figgy pudding!"

Once we crossed the threshold the R.A. made to bolt from me but I clung valiantly onto his hood while he galloped up and down hallways and in and out of rooms.  I'm sure we looked like a very strange version of a rodeo act.  The hostess appeared and suggested we take the R.A. up to her son's room because he has a mini trampoline.  Using his hood like a horse's reins, I guided the bucking bronco up to the second floor.  Once we hit that top step the R.A. again tried to make a break for it.  Luckily the time at the gym is really paying off and I was able to keep hold of him.  We lurched and stumbled down the hall and in and out of various bedrooms.  Eventually I was able to get the R.A. into the correct bedroom and pointed out the trampoline. (Normally the R.A. is a huge trampoline fan.  He likes to utilize his own trampoline to scale his father's dresser.)  Of course today he ran immediately past the trampoline and into the nearby closet from which I had to wrangle him.  This so enraged the R.A. that he emitted a shriek like a Braveheart warrior, vaulted onto the bed, and began ricocheting all over it.  I chased him around the bed, managed to snatch him and tried to again interest him in the trampoline.  Despite his yowlings the R.A. did step up onto the trampoline.  Unfortunately this was but an ingenious dupe and after a few tiny hops he jumped off the trampoline and skittered out of the room.  Luckily we still had on our winter coats and as I hotfooted after him I was able to snag his hood.  At that moment my husband appeared and stupidly asked how it was going.  Because this is a family blog I will omit my response.  Let's also just say that fortuitously for him I do not carry a firearm.

The R.A. and I again cantered through a few bedrooms before I was able to haul him into the bathroom.  I only chose this spot because it didn't have a bed for him to hurtle himself all over and in addition, I needed a moment to catch my breath.  As we both relaxed on the bathroom floor, the R.A. paused his furious caterwauling and took in the bathroom.  It quickly registered where we were and he immediately began disrobing because there was a shower and isn't that what one does?  I yelled, "No! No! No!" to which the R.A. replied, "No! No! No!"  We then engaged in a quick match of Greco-Roman Baby Wrestling as I attempted to put clothing items back on the R.A. while he simultaneously removed them.

Finally the R.A. accepted that there would be no shower and flounced out of the bathroom a la Joan Crawford.  No doubt he was livid at having been so unceremoniously manhandled.  I chased him down the stairs where we were once again met by the hostess who asked if I wanted anything.  So traumatized by the experience was I that I answered, "What I really want is to go home."

The hostess then suggested we try the rec. room in the basement because it had a lot of video games.  The R.A. really isn't much of a gamer but by now he was so desperate to leave that he was opening and closing random doors in an attempt to find the exit. The rec. room it was.

Down the R.A. and I tromped to the basement where were joined by my husband. There the R.A. proceeded to rail against me, my mother, and probably most of humanity.  Pacing back and forth he raged while wildly gesticulating.  All that rage created a powerful appetite and he demanded  chips which grievously were not provided for him immediately if not sooner which only lent credence to his position that his parents were useless imbeciles.

At this point I told my husband that there was no need in both of us being the R.A.'s whipping boys so why didn't he head up to the actual party.  My husband didn't even complete an insincere, "Well, if you're sure..." before he bounced up the stairs with an agility that was astonishing for someone with a bum knee and sporting a cane.

The R.A continued to pace and roar while also breaking Pringles up into tiny pieces, consuming some bits and grinding others into the rug with his heel.  We had another wrestling match when he insisted on tossing out his Pringles container into a toy box and I had the nerve to retrieve it.  Four times.  Finally I just hid the container in my coat pocket after which I was finally able to take off my coat.

Eventually the R.A. tired of this location and sprinted up the stairs with his captor in hot pursuit.  I chased him through the kitchen and into the  family room.  He came to an abrupt stop in the middle of the room and let out a few good caterwauls as if testing the acoustics.  The few people that were in the room retreated to the perimeter. Ultimately they did make their escapes.

The R.A. further acclimated himself to his most recent environment by doing wind sprints, charging at and tackling the furniture, and flicking at the Nativity set which was located on a window seat.  All this activity did further increase his appetite and he barked for more chips.  At this juncture my husband had joined us enabling me to head back down to the basement to retrieve the R.A.'s supplies.  As I descended the stairs I did briefly entertain the idea of slipping out a back door but then remembered that my husband had the car keys.  Alas, I was also prevented from hoofing it due to inadequate footwear.  Curses! Foiled again!

Dutifully I returned to the family room with the R.A.'s food.  The R.A. then devoted his attention to arranging his Pringles container and juice box very precisely on the floor.  Then, for good measure, he energetically flicked his fingers and yowled over the juice and chips.  Finally satisfied with his work the R.A. resumed pacing and caterwauling, occasionally pausing to peer out the window as if waiting for his ride to come.

This routine was rigorously and scrupulously repeated.  Of course my husband and I were lulled into a false sense of security and we let our guards down.  We stopped hovering.  At that moment the R.A. lunged at the Nativity set and attempted to abscond with St. Joseph (rather apropos as it is his middle name.)  Much to his dismay the R.A. was thwarted by his father.

Grudgingly the R.A. returned to pacing, mewling, and grinding Pringles into the floor.  After a while he tried to push his father out of the room while ordering, "No, please!  Go!"  Obviously what the R.A. meant was: "You see, I do not like having both of you in the room so Daddy-Guy, you must go.  True, your speed is greatly diminished since the appearance of your cane but you are still the only one who can pick me up.  Mommy-Lady, however, due to her rigorous gym workouts has the speed.  Together you can be remotely competent and therefore capable of impinging upon my plans.  Together you are like a very pathetic super hero team sort of like a Zan and Jayna but unbelievably lamer."

Well, we may be lame and dim but after a while even we learn our lesson and sometimes don't immediately forget whatever lesson we just learned.  Based on the R.A.'s desperation to get rid of his father we figured something dastardly was surely afoot so we stuck to him like Thomas the Tank Engine stickers.

Thankfully the remainder of our time passed without further major incident.  We stayed in our current position in the family room and good St. Joseph remained unmolested.

The R.A., however, did exact his vengeance.  The following morning he was awake at 4:30 AM loudly demanding to be liberated from his room.  My husband retrieved him and the R.A. promptly dashed into the bathroom and insisted on having a shower.  He and his father then engaged in a heated exchange over why the R.A. would not be showering at such a Kitchen-God forsaken early hour.  In a fit of rage the R.A. stomped into our bedroom and proceeded to spend the next hour jumping in and out of our bed, barking out orders for various food items, barking out orders for changes in the selection of DVD in the mini player, and barking out orders that we unlock and open our bedroom door so that he could no doubt pillage the rest of the house.  As you can imagine it was a wonderfully relaxing time.

After about an hour the R.A. decided enough was enough and that he really did need a shower and promptly vomited on the floor and on the edge of our bedspread. Moments later as he jumped up and down in the shower he cackled in delight as any true evil dictator worth his salty Pringles would. 






Monday, December 23, 2013

Kitchen God Rest Ye Merry Idiots

The holidays mean a round of social events - just what every person on the Autism Spectrum adores.  Our holiday season officially commences with the celebration of the anniversary of the R.A.'s arrival on our lowly planet.  On December 14 the R.A. turned the big "0-8" (Although if you ask him how old he is he still insists he's seven.  No doubt he's annoyed at having finally learned to respond "seven" to the age question only to discover that we've now apparently arbitrarily changed the answer to "eight": "Is there no consistency on this Kitchen God forsaken planet?!")

Next up was the holiday show at the R.A.'s Institute of Earth Enculturation a.k.a. his school.  There are approximately 120 students at the R.A.'s school, ranging in age from preschool through young adulthood.  Putting on a Christmas Extravaganza at any school is a huge project.  Putting on a Christmas Extravaganza at a school like the R.A.'s is nothing short of miraculous and a true testament to the dedication and sheer fabulousness of the staff.  Each class offered a presentation, either live or played a pre-recorded video.  They were wonderful.  And you could tell the students were excited and had a great time.  It was an event that was joyful and touching.  It really was the best Christmas pageant ever.

The R.A.'s class, no doubt following the "saving the best for almost last" principle, performed second to last.  They presented a very rigorous interpretation of "Rockin' Around the Christmas Tree" which consisted of his teachers and fellow students joining hands and merrily skipping/running like crank maniacs around a Christmas tree.  I'm telling you, it was better than "Cats."

Following the show my husband and I decided  to take the R.A. out for lunch to celebrate his stage debut.  Unfortunately we made the fatal mistake of assumption.  Lately the R.A. has had little to no serious issues when visiting an establishment for the first time.  Stupidly we assumed he would be delighted to dine at a new restaurant.  I don't know if the R.A. was still suffering from the heady effects of his Tony worthy performance but he had a full blown DIVA tantrum.

Things immediately hit the skids when we were seated in the bar.  This outraged the R.A. who no doubt was insulted by the sheer impertinence of the hostess to park us in such uncouth dining accommodations: "The bar?  Surely you must be joking!  Do you not know who I am?  In addition to being the future dictator of your little backward and backwater planet I am a future Tony award winner!  Have you not seen my performance of 'Sixth Boy to the Right of the Occupational Therapist from 'Rockin' Around the Christmas Tree?'  It was compelling, finely textured, and subtly nuanced.  And my feet made the most noise on the hardwood floor."

With it being the last Friday before Christmas and being located in the middle of several office parks, the joint was jumping.  It was loud.  It was crowded.  It was crammed full of loathsome Earth creatures.  Not exactly up the R.A.'s alien alley.

Before arriving we did make the requisite McD stop for fries and nuggets.  Of course the people at McD forgot to put any ketchup (or napkins) in the bag.  So we sat in our booth in the bar with the R.A. violently waving a naked fry at my husband and yowling something which I'm sure translated into, "What is wrong with this picture, Big Man?!  Surely even a simpleton like yourself can figure this one out!"  Our server kept sprinting by our table and despite my husband's and my efforts to flag him down for some (insert expletive here) ketchup it was a futile endeavor.  I know it was loud and busy in there but surely the server could hear the caterwauls of fury and see our desperation as we waved our arms with a wildness that one usually reserves for flagging down rescue helicopters while trapped on the side of a mountain (admittedly a more enviable position than what we were currently in.)

Finally the server stopped at our table.  He got through a cheerful, "Hi, my name is (name has been omitted to protect the innocent) and I'll be your server..." when my husband cut him off, "Can we have some ketchup?"  Bemused by the request the server stopped in mid-syllable.  "Our son has Autism and is in the middle of a meltdown so if you could grab us some ketchup that would be great," I hastily explained.  The server finally understood the urgency of the situation and turned and snagged a bottled of ketchup from the table behind him.  Those diners looked bewildered but hey, all's fair in love and R.A. meltdowns. Go get your own damn ketchup.

"Thank you!" my husband snatched the bottle and squirted it out.  I don't know if his nerves were jangled but he bungled the operation, making the inexcusable error of also coating some nuggets with ketchup.  Not surprisingly the R.A. took this as an unforgivable affront to his station and reacted with ire.

"What did you do that for?" I hissed at my husband, my frayed nerves shredding finer and finer with each caterwaul.

"I didn't do it on purpose!" My husband hissed back.  "McD neglected to put napkins in the bag.  I had to improvise."

The server cleared his throat.  In the heat of the ketchup battle we forgot he was there.  Hastily we gave our orders and he sprinted off not reappearing until we put out a Missing Person's Bulletin on him.

Despite finally having his ketchup, the R.A. was not to be calmed (no doubt related to the snafu of the presentation of his meal.) His yowls grew in decibels and his hand flapping and body rocking increased.  Obviously we were a HUUUGGEEE hit with the other diners.  Apparently the group seated behind me was glaring at us.  My husband, fearing I might be compelled to initiate a friendly and informational discussion about "Autism, My Son, and What the Hell Are You Looking At?" decided not to tell me about it.  Yes, a wise decision because at that point I may have gone all "Kill Bill" on their Yuppie backsides.  Or worse, moved the R.A. to their table for lunch.

In a desperate attempt to calm the R.A. I did sing the three officially sanctioned Christmas songs.  Thank the Kitchen God that I am a children's librarian and therefore not self-conscious while shaking my antlers in public and warbling, "If you're a reindeer and you know it shake your antlers."  Although the R.A. did bark out song requests he remained highly agitated.  Ultimately we decided to get the order to go.  We then engaged in another rousing round of  "Server, Why Can't You See Us When That Air National Guard Rescue Chopper Flying Overhead Did."  Oddly, the server did not appear surprised  by our request to get the food to go.

My husband remained in the restaurant to pay for and collect the food while I dragged/wrestled/tugged the R.A. out to the car.  Once ensconced in the vehicle he sat serenely, gazing out the window.  Apparently all the R.A. wanted was a window seat.

Thursday, December 5, 2013

Black Wednesday

Being the party animal that he is, the R.A. made sure that the holiday season went off with a bang.  And a few whimpers - mostly mine.  He started the fun the day before Thanksgiving.

I knew I had a full plate that Wednesday night.  As I drove home I concocted a thoughtful, well crafted, detail oriented plan to tackle all the things I needed to get done that evening: laundry, pick up take out dinner, bake, feed children, pick up my brother from the train station, collapse into bed.  A lot to do and not a lot of time to do it in. Basically, when I got home I hit the ground running.

5:45 PM - Entered house and began load of laundry.
5:55 PM - Called in take out order
6:00 PM - Feeling very smug that everything is going according to plan.  Riding tsunami of self congratulations.
6:05 PM - Rudely bitch slapped out of that fantasy.  Went to fetch the R.A. from his room and was greeted by a grinning and crowing with delight R.A. who had not only disrobed but had piddled and pooed all over his room including his bed linens, one of his Teletubbies, and ironically enough, Winnie the Pooh.
6:06 PM - Seriously considering disemboweling self with a Dum Dum.
6:07 PM - Deposit a jubilant R.A. into the shower and commence cleaning his room.  Also inaugurate feeling sorry for myself.
6:25 PM - Very wet tussle with R.A. as I attempt to pull him from the shower.  R.A. is reluctant to exit shower.
6:28 PM - Damp tussle with R.A. as I wrangle him into clothes.  R.A. is reluctant to dress.
6:30 PM - Realize I neglected to put Teletubby Po in the basement with the rest of casualties from the "Great Poo Incident of November 2013."
6:31 PM - Curse vigorously.
6:33 PM - Decide am too exhausted, cranky, mutinous, to schlep Po to the basement so bury her in the middle of my dirty laundry basket.  Po must be buried deep or R.A. will surely grab her and roll around the floor with her, becoming one with her pooey goodness. Make mental note to take care of Po later.
6:33 PM - Immediately forget said mental note.
6:34 PM - Wrestle the R.A. into his coat so that he can accompany me to pick up the food.
6:35 PM - R.A. furiously yowls all the way to the restaurant.
6:39 PM - Manage to snag a cherry parking spot that is only located a half mile from the restaurant.
6:40 PM - Wrangle the R.A. from the car and begin to walk/drag him to the restaurant.  He repeatedly caterwauls, "No, please!"  Initially I am anxious that passersby might think a kidnapping was in progress and call the police on me.  Quickly consider that jail cell would be a quiet place so maybe not such a bad thing.
6:41 PM - The heavens open and  we are drenched with rain.  R.A. roars in fury.
6:45 PM - Finally enter Olive Garden.
6:46 PM - Despite being over 20 minutes late to pick up our order and the restaurant being relatively empty, the food is not ready.  Deposit a mewling R.A. into a nearby seat in the lobby.  R.A. rips off his coat and throws it on the floor.  He then begins a vicious verbal dressing down of adjacent decorative Christmas tree.
6:47 PM - Due to stress I have blurted out to the Olive Garden hostess that I hope I don't smell like poo.  Not unexpectedly, she looks horrified and takes several steps away from me.
6:48 PM - Have just enough self awareness to be mortified and slink over to the R.A.  Apparently the Christmas tree is still insolent as the R.A.'s tirade has become more fierce.  Am feeling so upset that I am tempted to take my feelings out on the impudent Christmas tree.
6:50 PM - Well meaning yet naive waitress approaches the R.A. bearing a gift of color in kiddie menu and crayons.  The R.A. rewards her kindness with savage snarling.  Despite her gaffe, the R.A. snatches the items from her.  The R.A. and I argue about him saying "thank you."  Waitress flees.  A few customers look like they want to join her.
6:51 PM - In a fit of pique the R.A. removes paper from the crayons and then breaks the crayons into tiny pieces.  I am relieved he finally found something with which to occupy himself.
6:53 PM - R.A. has removed shoes.
6:54 PM - Impromptu shoe wrestling match interrupted by nervous looking hostess who tells us our order is ready.
6:55 PM - Engage in rigorous game of paying the bill/chase.
7:00 PM - Depart Olive Garden, leaving mass destruction in our wake.  Kitchen staff applauds as we withdraw.
7:03 PM - Halfway to car the heavens open up again.  R.A. attempts to climb into the Olive Garden bag.
7:08 PM - Head to McD for requisite nuggets and fries.
7:12 PM - R.A. still so enraged that person on other end of intercom at McD cannot hear my order over the monstrous caterwauling.
7:23 PM - Finally reach home.  To punish me the R.A. refuses to eat and spends most of evening pacing, wildly gesturing, yowling, and ensuring that no one can see the television or hear it.
7:35 PM - Attempt to eat dinner.  During this time the R.A. stops pacing and wedges himself behind me on my chair and proceeds to use my back to do leg curls.
8:00 PM -Feel the R.A. and I have had our fill of "quality time" and put him to bed.
8:01 PM - Realize holiday season has yet to begin but already feel as exhausted as if I had attended 3 consecutive Black Friday sales and engaged in several sets of fisticuffs.
8:02 PM - Immediately become unappealing cocktail of despair and fear.
8:03 PM - Ask Kitchen God to bring on the vaporization because it is the only way I am guaranteed a rest.
8:04 PM - Also ask Kitchen God to smite husband.