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, January 20, 2013

Sleep When You're Vaporized

My husband and I are in constant conditioning training.  Much of the time we are the last to know that we are in the midst of a drill (of course with all the accompanying caterwauling you'd swear the R.A. is bellowing, "This is not a drill, people!)  Which I don't know why we are always so surprised considering that we know that the R.A. believes us to be worthless and weak and in desperate need of "aliening up."  Last night we had a surprise/guerrilla training exercise.  At 1:45 AM (EST) the R.A. initiated coughing.  My husband had recently come home from work and heard the early warning sounds signaling that a boofing was imminent.  He raced up the stairs and pulled the R.A. from his room, depositing him in front of the bathroom toilet.  Although simultaneously coughing and gagging, the R.A. still managed to be viciously indignant at being manhandled.  In between his wretches he yowled in annoyance at his father: "YOWL! YOWL! YOWL! Vomit, vomit.  YOWL! Gag! YOWL! Vomit, vomit, vomit. YOWL! (Furious hand gestures) YOWL! CATERWAUL! Vomit. (Furious hand gestures) YOWL! Vomit, vomit."  Translation: How dare you treat me with such insouciance, you low born life form!  Don't you know who I am?! Vomit, vomit, vomit."

My husband has, as that great urban philosopher T-Bone says "mad skillz."  He swooped in, grabbed the R.A., swiftly raced to the bathroom and adeptly situated him in front of the toilet.  Not one drop of vomit was spilled except in the toilet.  It was like a "Vomitless Revolution."  I don't think there are Navy SEAL operations that run as smoothly.  In fact, I don't think a Navy SEAL would have done it any better.

At this point I stumbled out of bed and took over bathing the R.A. Over the years my husband and I have become a vomit clean up machine.  We're extremely efficient.  I handle body vomit recon. and he deals with environmental vomit recon. We're so good that it doesn't matter where the throw up event has happened - in house or in the community.  We just jump into action.  I don't mean to brag but we sometimes make it look effortless.  Don't be jealous.  It's a combination of endless drills and innate talent.  

Once installed in the shower the R.A.'s mood greatly improved.  He was energized and happily jumped up and down in the water's spray, crowing happily.  Warily we watched the R.A. partake in his version of water aerobics.  The more time passed the higher his toe jumps and more animated his arm motions.  Crap.  It was like he got in a refreshing nap and was now ready to tackle the night (or day or whatever the hell it is at 2 AM.)  My husband and I exchanged sorrowful looks.  What good is it being a vomit ninja when you're not allowed to sleep?

As we got the R.A. dressed in clean backwards/footie-less footie pajamas, he vigorously bounced on his toes, flapped for Britain and caterwauled loudly.  It was like trying to dress an overgrown chihuahua on crack.  I swear as he jounced he was also taunting us, "How them ninja vomit skillz now, beeyatches?!  Your punk asses are mine tonight!  Oh, yeah!"  And then to bring home the point he finger flicked aggressively in our faces as if to say, "Take that, sneetches!"

Once a middle of the night vomit event has occurred, the R.A. refuses to return to his own room instead preferring our room.  I believe it's because of our room's many attractive accouterments -  easy access to taller furniture and shelving for greater climbing challenges, a television with On Demand, a lap top that plays DVDs should one want a program not offered On Demand, a bigger bed that has higher bounce potential, not to mention that said bed is perfect for when he finally exhausts himself and crashes.  The room also comes with two dimwitted yet easily intimidated servants.  What more could any alien astronaut ask for?

Usually chips, juice, french fries, carrots, ketchup, and lollipops.

Following protocol, we depart for our bedroom.  I suggest not turning on the TV or computer, thinking that maybe if we keep things quiet it won't stimulate the R.A. and maybe he will just settle down and go to sleep.

So there the three of us are in the bed, in our usual positions, the R.A. sprawled in the middle of the bed and my husband and I clinging to the edges - in complete darkness.  Yes, it was extremely relaxing, like being at a spa. A spa in Hell.  In the bad section of Hell.  Seeing as there was no TV the R.A. found other ways to occupy his time.  First he began by taking all of the pillows and snarling at us if we foolishly attempted to take one.  Next the R.A. spent a while kneading my husband's back and leg hair with his toes. Then the R.A. decided that the actual pillows weren't doing it for him and tried to use me as a pillow.  The R.A. is quite small in stature.  However, at least half of his size and weight are contained in his head.  Let's just say when it comes to the R.A.'s head, he's "big boned."  One of my friends, every once in a while will survey the R.A., look at me and sigh, "You must be soooo glad you had a C-section."  Unfortunately my body was determined as being not as comfortable as an actual pillow and this the R.A. viewed as my being defiant and he spent a good amount of time chinning my hands and yowling at me.

The R.A. did pace himself, not rushing through any of the above activities.  He was also careful to take frequent breaks to wiggle, hand flap, finger flick, and caterwaul.

True to form, the R.A. picked an excellent night for a sleepless conditioning drill.  The following morning (or later in the morning?) I was supposed to conduct a storytime for special needs families.  I was somewhat comforted by the fact that it was for other special needs families so there  was a pretty good chance that those other parents would also be sleep deprived. If I blundered my way through the activities they probably wouldn't notice.  I toyed with the idea of instead of doing an actual storytime we would just let the kids tear the meeting room apart while the adults napped. Although believing it an excellent idea I abandoned it because my boss can be a bit uptight about destruction of library property.

During the drill, my husband and I did manage to doze a bit, frequently being abruptly woken by a ferocious yowl or aggressive chinning - the R.A.'s quaint way of saying, "Get your lazy asses up, losers!"  Unluckily for the R.A. the sleep deprivation exercises are not toughening us up but rather teaching us to sleep under any conditions.  My husband claims he can now sleep while standing upright. I am not that advanced, yet.

Shortly after 4 AM the drill concluded, signaled by the R.A.'s tucking himself in and his gentle snores.  He devotes much of himself to our training and it really takes a lot out of him.  No doubt it is a thankless and hopeless task.

Me, I can't wait for the invasion and the imminent vaporization.  I'm really looking forward to the rest.

Sunday, January 6, 2013

To Go Where No Man Has Gone Before


The Holy Grail
Atlantis
The Ark of the Covenant
Popover Mix

Through the centuries men have searched for legendary and mythical treasures, often embarking on dangerous quests, driven by ambition and an unquenchable desire for discovery.  This is the story of one such backward/footie-less footie pajamaed adventurer.

In addition to being plagued by environmental allergies, the R.A. suffers from food allergies.  As he grows older he is outgrowing many of these food allergies.  Thankfully his extreme food rigidity still ensures that the number of foods he will deign to eat is still in the single digits.

We were lucky enough to embark on the Allergy Adventure at the same time we plunged into the Great Autism Adventure.  So while we were navigating the world of Early Intervention, Physical Therapy, Occupational Therapy, Speech Therapy, Music Therapy, and ABA we were also negotiating the world of Food Allergies.  Ever the over-achievers, one condition was not enough for us.  When it comes to food allergies we found that although there are lots of food on the "No" list there are "allergy food substitutes" that promise to be very similar to the actual foods that they are subbing for.  What we also ascertained is that 98.4% of the time that is a BIG, FAT, STINKING lie.  Case in point - Sunflower butter.

Sunflower butter is presented as a substitute for peanut butter.  We quickly determined that not only is it a lousy substitute, it isn't even in the same category as peanut butter.  They are so dissimilar they should not even be allowed to ever be referenced together.  Let me put it this way - Tom Brady is peanut butter. Mark Sanchez is sunflower butter who then gets substituted by the even yuckier Tim Tebow.  See? There is is no comparison among them.

Shockingly, the R.A. soundly rejected the sunflower butter.  We could not blame him.  Sunflower butter has the consistency and taste of something used to caulk a bathtub.

Sunflower butter was quickly abandoned and we plodded on in our journey to discover edible allergy foods.  Then we entered the exotic and sometimes just plain weird world of allergy cookies.  I don't know if some of the substitute ingredients were the result of desperation or a dare.  Finally we hit on a brand that was extremely close to tasting like an actual cookie.  True, it had the weight and consistency of a small hockey puck but it didn't taste like something from the putty section of Home Depot.  And the R.A. liked them.

This is not to mean that our affair with this allergy cookie was not without its trials and tribulations.  As with most crappy allergy substitutes it was more expensive than the non-allergy item but a low interest loan from my credit union aided with that.  And because it almost tasted like real food, other people liked them and stores tended to run out.  Obviously grocery store staff in charge of ordering  those cookies did not have children with food allergies because they often took their sweet time re-stocking them.  My husband did manage to work out an arrangement with an assistant manager at our local market.  I think he finally wore her down with his pleading and tears of desperation.  Sometimes making a scene is a good thing.

Eventually, some of the R.A.'s food allergies abated and he was able to consume more "non-allergy" items, well, at least it said so on paper.  The R.A. moved away from his allergy cookies to real cookies, a day my husband greeted with much jubilation.  Not only are "regular" cookies cheaper but Market Basket store brand chocolate chip cookies are always in stock (of course they are only two levels above allergy cookies in texture and taste which explains why they are always in stock.)

"Wait!" you cry.  "What does a long winded allergy history of the R.A. peppered with Patriots and Jets references (meaningful only to New England fans) have to do with quests?"

I am glad you asked.  The Patriots inclusion is pretty much because they are on a bye week and my husband was telling me about an article some sports jake-hole wrote ranking quarterbacks that ranked Brady third.  I mean, seriously?  Third?  Who wrote the article, Rex Ryan?  Even he can't be that stupid.

Anyway, the reason I included the R.A.'s allergy history is because it is related to quests - the R.A.'s current quest to be exact.

We first became aware of the R.A.'s quest yesterday when my husband discovered him standing on tip-toe on top of our stove brandishing the Stick of Infamy in one hand and clutching a box

popover mix in his other hand.  To access the stove, he had dragged over a small footstool/ladder.  One is supposed to unfold the ladder to expose the steps.  The R.A., ever a man of quick action, didn't have time for that and climbed it folded.  My husband removed the R.A. from the stove top and then wrangled the box out of an incensed R.A.'s iron fisted grasp.  After the intense yet impromptu wrestling match, the R.A. shrieked at his father, "Cookie! Cookie!"  Pointlessly Daddy attempted to explain that the box did not contain cookies, all the while wondering why the R.A. would think it was a box of cookies.  Much to the R.A.'s ever potent fury, the popover mix was returned to its place in the cabinet above the stove.

Never one to say "never" (really, he has never said it), the R.A. was undeterred and determined.   A short while later my husband found the R.A. back on top of the stove with the SOI and box of popover mix. This time he had used 24 packs of diet Coke and diet Pepsi to reach the stove top.

And so it went for pretty much the entire afternoon - the R.A. on his Popover Crusade and his father attempting to thwart him.  It was like a really boring Errol Flynn film.

However, all was not for naught (as I believe Errol Flynn said as Robin Hood) as my husband did decode the R.A.'s mysterious obsession with the box of popover mix.  It dawned on Daddy that the popover box was sort of similar in appearance to the allergy cookie box, hence the R.A. screaming "Cookie! Cookie!" while clutching it.  Seeing as he hasn't eaten an allergy cookie in over three years, this association was astounding, as was my husband's revelation.

I was at work all day yesterday but when I got home, the R.A. was still at it.  In extreme irritation my mother snapped at my husband to hide "the damn thing."  I got the happy task of occupying/tussling with the R.A. in the living room while his father put the box in another cabinet.  Wise to us, the R.A. yowled in rage while attempting to free himself.  Once the deed was done he wrenched free from my grasp and ran into the kitchen.  Like a mad man he surveyed the room.  He then caterwauled something along the lines of, "It doesn't matter what you do!  I will find it as the Kitchen God is my witness!"

My husband then left to run some errands/escape.  A short time later I heard a loud crash in the kitchen followed by an infuriated yowl.  I ran into the room to discover the R.A. on his back on the floor, flailing his arms and legs in agitation and frustration.  Above where he lay the cabinet door was opened to reveal the box of popover mix.  This time to climb the counter the R.A. had used a large plastic container of pretzels and a box containing a "Hello Kitty" chia pet in an attempt to hoist himself up.  Unfortunately he made one critical mistake - instead of balancing the pretzel container on top of the more stable box, the R.A. had precariously balanced the box on top of the pretzels and thus fell, much to his bitter disappointment.

Apparently, even for the R.A., this was the last straw.  Savagely caterwauling he stomped up to his room no doubt to plan his next attack which involved being naked as a short time later he ran down the stairs sans clothing.  I think the R.A. was going for the ancient Celtic warrior thing and was on his way to get a blue marker with which to color himself.  Sadly our little Braveheart was intercepted by his sister who alerted the local authorities (me) who then subjected the R.A. to backward/footie-less footie pajamas (our equivalent of a prison jump suit) as well as to a documentary about Marlene Dietrich which he watched with me, probably thinking it a cruel and unjust punishment.

And no doubt plotting his revenge.





Tuesday, January 1, 2013

Holiday Funk

I haven't written in a while because a plague has gone through our house.  It started a couple of weeks before Christmas and as with most illnesses that strike our home, is traced back to our very own R.A. also affectionately known as "Patient Zero."  I don't know if it's because of his alien physiological makeup but we very rarely get run of the mill viruses - runny nose, cough, maybe a fever.  It's always something that seems like the Influenza Pandemic of 1918 but not as mild.  Initially I thought the illnesses were always worse because the alien R.A. has sensitivities to our earth atmosphere.  Remember how in "War of the Worlds" the Martians were felled by plain old human germs?  However, following the past few epidemics that have ravaged my family I'm thinking it's actually reversed - in reality the R.A. is attempting to use germ warfare on us.  Unfortunately for him, although we are an agonizingly stupid people we are quite robust and manage to recuperate from whatever his contagion du jour.

The R.A. has been on vacation this week.  This means he has had a lot more free time to devote to his various hobbies such as jumping up and down in front of the television while flicking the screen with his fingers and loudly caterwauling; teetering around the edges of our china cabinet on tip-toes while brandishing the Stick of Infamy; creating wall art masterpieces in crayon and Sharpie marker.  He has been having a wonderful time. Us, not so much.

Here are some Christmas vacation low-lights:

An Homage to Tito Puente
The Stick of Infamy II is back and louder than ever.  Although the R.A. still utilizes it in a "Mussolini" fashion i.e. furiously waving it around while harshly reprimanding us for whatever our recent failures, ever the innovator, he has discovered another use for it.  The R.A. has determined that he does in fact have the rhythm in him and the SOI is his instrument.  His impromptu concerts consist of him repeatedly whacking the floor with the SOI.  Some of the pieces are purely instrumental while on others he adds energetic vocals.  The concerts primarily take place during times that his grandmother is trying to sleep.  Despite being somewhat cacophonous, my husband and I are concert fans as it means the R.A. is engaged in an activity that is neither death defying nor involving permanent markers.  My mother is not a fan and therefore wrangled the SOI from the R.A. and deposited it into her bedroom.  A couple of days following this incredible act of defiance the R.A. paid a visit to his grandmother in her bedroom.  He was very sweet and affectionate.  After the R.A. left the room my mother discovered that he had swiped the SOI.  He is our own Mata Hari with freckles and outrageous cowlicks.


Another favorite concert spot is standing on top of our convection oven which is located on top of a table in our kitchen.  For these concerts the R.A. is a conductor using the SOI as a baton, directing an unseen orchestra who apparently are not very good, based on the amount of yelling he does during the program.

I Am Master of All I Survey (as Well as All That I Don't)
Apparently everything that the R.A. is currently interested in is located on high shelves or cabinets.  They are also things that my husband and I cannot fetch for the R.A. quickly enough as we are goofing off doing things like laundry or taking a shower.  Never one to let the grass grow under his feet (partially due to allergies), the R.A. then takes it upon himself to get what he wants.  Sometimes this involves complicated feats of engineering like dragging 24 packs of diet Coke across the room and using them to construct make shift ladders to scale the stove to reach the cabinets over the stove.  When a man needs Snoopy gummies he will apparently stop at nothing.  So much for putting snacks in hard to reach locations.

Give Me Liberty or Give Me Lollies
The freedom of vacation is transferring to the R.A.'s desire to be liberated from his clothing.  In addition to having to closely monitor him to keep him from climbing convection ovens or decorating the living room walls with crayon, we have discovered that any time the R.A. is left unattended he removes all of his clothing.  For some reason his preferred "undressing" room is the stairway that goes from the first to the second floor.  As a result, the R.A. has spent the later part of his vacation sporting backwards and footie-less footie pajamas.  (And rockin' the look as always.)  We are only dressing him in pants and a shirt if we are going out.  We still have two days left of vacation so that could change too.

We will have to see how our remaining days go.  I fully anticipate his Grand Finale will involve scaling the roof or hot wiring his father's car.  While dressed in backwards and footie-less footie pajamas, of course.