Like a Norse Saga

"Shocking!"

"Horrifying!"

"Terrifying!"

"The most petrifying spectacle you will see all year!"

"You'll never sleep again because you'll be too frightened to close your eyes!"

The above is not a collection of horror movie reviews.  It's a review of an afternoon out for my family compiled by innocent bystanders.  So actually it is sort of like a horror movie review.

This past Saturday my husband (claimed) he had to work.  It was really lousy timing because Saturday was scheduled to be an action packed day of errands and obligations.  And since child care was down to a one person operation it meant I would have to bring the R.A. along.  We had a lot to do and each task would be a challenge. All I needed was a mythological beast to battle and it would have all the hallmarks of a Norse Saga.

Strangely, we don't have family and friends falling all over themselves to babysit, at least not the R.A.  Well anyone outside of my mother.  Sometimes people will gladly offer to babysit my daughter but not my son.  I often want to ask if they were aware that I had another child.  Or maybe people assume an evil genius despot in training does not require being babysat.  More likely they don't have the guts to take him on.

All week, the very idea of tackling our Saturday tasks with the R.A. in tow filled me with dread.  I alternated between shoving Saturday to the bowels of my mind and pretending that my upcoming doom wasn't going to happen, to imagining worst case scenarios that involved Excommunication and fire trucks, often both.

I had intended to run some errands.  But the minute I found out Saturday was to be a solo mission I jettisoned that idea.  Lately the R.A. has been in training for his new extreme sport - shopping cart para jumping.  I was not up for the thrills, chills, or the sure fire spills.  Like the R.A. caterwauls, "No, please!"

So I moved on to obligation #2 - taking my daughter to her gymnastics lesson.

The R.A. has a love-hate relationship with his sister's gym.  He loves to hate it.  As we drive down the street that the gym is located on, the R.A. starts demonstrating his dislike for the gym by angrily mewling.  The decibels increase as we park the car, walk through the parking lot, and enter the lobby at which point he has whipped himself up into such a frenzy that he keeps trying to run back to the car.  It is quite an entrance.  Vivian Leigh had nothing on the R.A.  For some reason, the facility and any and all persons in it offend the R.A. greatly.  Woe to the kind, yet clueless, well-meaning parent who attempts to smile at him and say hello.  He/She is met with a nasty snarl and furious yowling.  One does not have to speak fluent "Yowlish" to understand that incorporated within the vicious melange is something along the lines of, "What are you looking at?  Wipe that smile off your face or I will!"

I like to enter the lobby/waiting area by loudly declaring to my daughter (who is desperately and unsuccessfully trying to look like she is not with us), "Let's leave your brother alone.  He seems to be a bit of a Futzy McCrabbypants today." It's really more of a courtesy announcement to the room.  I'm thinking as a means of streamlining the operation I might just get him a t-shirt that says, "Bugger off!"

Meanwhile the R.A. has thrown himself onto his knees, begun rocking back and forth, covered his ears with his hands and is caterwauling like he is trying to break the sound barrier.  Toddler siblings scramble to get out of the room and baby siblings start to wail.  Other parents gape at me wearing horrified expressions.  We're here!

They ought to sound an alarm when our car pulls into the lot.  "Batten down the hatches!  Trouble approaches!"

Eventually the R.A. tires of his act of gymnastics protest and spends the remaining time alternating between scaling over unsuspecting parents to get a view at one of the interior windows into the gym area and making mad dashes into the gym area anytime the gym door opens.  This then commences a rousing game of Greco-Roman chase combined with Greco-Roman baby wrestling as I wrangle the R.A. back into the waiting area.

At the end of the gym lesson I don't know who has had a more rigorous workout - my daughter or me.

Luckily Unfortunately I have to work a lot of Saturday mornings so my husband tends to do most of the gymnastics lessons.

Because waiting for my daughter has become a bit stressful, I have started dropping my daughter off for her lesson and taking the R.A. to a nearby McDonald's for the requisite fries and nuggets (and yes, ketchup.)  We have a favorite booth that overlooks the parking lot where the R.A. enjoys his early lunch and flapping at passing cars.  It's actually quite pleasant and ketchup-y.

This past Saturday, however, the McDonald's experience did not go as well.  For one thing it was crowded and loud like Bourbon Street on Fat Tuesday.  As we stood in line to order, the R.A. caterwauled in rage as if to say, "Who the hell are all these people and why are they here?"

Then, another family had the temerity to be sitting in our booth AND did not take the oh so subtle hint that they were sitting in reserved seating.  The hint being that several times the R.A. charged the table and attempted to sit in one of the occupied booths much to the horror of the family who probably did not know they were participants in a game of full contact lunch time.

Quite skillfully I managed to balance our tray of food and guide/tussle the R.A. to a vacant table that had the massive drawback of not being near a window.  I then wrestled the R.A. into the booth.  He was not pleased and several times, once I thought I had him seated, tried to dash out of the booth.  The R.A. angrily yowled at me but finally accepted his fate of being ungraciously relegated to the back of the restaurant table.  But he wasn't going to like it and made sure everyone knew it by savagely yowling.  He refused to eat and I think at one point, if my Yowlish serves me, spat out something like, "Eat your own damn nuggets!"

Lately the R.A. has been on a musical kick, demanding I sing, in varying order, three approved Thanksgiving songs.  Usually there is strict protocol to these musical interludes: 1. They must be sung at times that are very inconvenient for me such as dinnertime. 2. I must sing them from the specifically designated staging area, our staircase that connects the first and second floors. 3. I am not allowed to slip in other songs.

The R.A. was becoming more and more riled up and I was desperate to calm him.  So I started singing one of the approved Thanksgiving songs. Almost immediately he stopped yowling and studied me.  I commenced a second song and the R.A. stopped rocking.  By the third song he started eating a fry and then proceeded to demand particular songs.  Yes, it meant I didn't get to eat but it did mean he was civil.  I would forgo a Roman banquet for a bit of tranquility.

Pretty soon the R.A. was having a swell time for himself.  It was probably his version of dinner theater.  He then noticed that we were sitting next to the restrooms and became extremely interested in the action of people going in and out.  If someone was in for what the R.A. determined a long time he would have me stop singing and perch himself forward on his seat, waiting expectantly for the person to emerge.  When the person finally did the R.A. would exhale in relief and grin at me as if to say, "Whew!  Close call on that one!  But he made it!"  If his hands weren't full of fries he probably would have fist bumped the other diner.

The R.A. was having such a good time that it was difficult getting him to leave.  Complicating the matter was that I had to use the restroom.  Now, the R.A. is a fan of viewing other people going into and coming out of the restroom but not so much a fan of himself using or even entering a public restroom.  As we entered the restroom he bellowed as if I had just flogged him 37 times.  Once inside the stall the R.A. wedged himself behind the toilet and wailed furiously while chinning himself.  I made a snap decision to  hold off in having him use the potty.  It would be too traumatizing for both of us. To be honest I was also emotionally drained from my Thanksgiving concert performance.

We finally left McDonald's and headed back to the gym to pick up my daughter.  The next task was actually the more challenging one.  I had a meeting at my church and with no child care, had to take the G2* with me.  The meeting was to occur right after gymnastics so I had to hit the drive through for my daughter.  The plan was that I would set up the G2 in a corner of the meeting room and they would eat (I brought the R.A.'s lunch box) while the meeting went on.

Unfortunately the R.A. did not approve of Austin Hall, the room where we were meeting.  I had set him up with snacks and my daughter with her lunch but the R.A. was not down with it.  He kept running up to other people at the meeting, making as if to chin them and yowling furiously.  Anytime a person entered the room the R.A. made to dart around him and attempted to bolt out of the room.  And this was all before the meeting officially started. I apologized repeatedly to meeting attendees explaining he had autism and I had child care issues.  Just prior to the commencement of the meeting, the priest decided to move the meeting downstairs to the rectory's dining room.  So I had to pack up all of the G2's supplies and head down.  Of course, even though the original meeting spot offended the R.A., moving exasperated him even more.  In addition to carrying all of my children's gear I had to hold the R.A. by his collar and tug him down to the dining room.  Fortuitously the trek to the dining room included a creaky set of stairs.  Nothing for nothing but by this time even Thor would have been a little wilty and overwhelmed.

The dining room was tactically a better space and I managed to snag a spot in a back corner.  I settled my daughter on the floor, ("It's like a picnic!" I told her. "Mom, this is a dining room, there are like 6 tables down here. Dining tables," she pointed out. "They're for real people to eat at! Not us!" I hissed at her.)  The R.A., true to his patrician/tyrant nature, refused to sit on the floor and took my spot at the table where he proceeded to work on his memoirs** while mewling at what must have been the happy bits and waving his hands like he was conducting the "1812 Overture" much to the disadvantage of the poor man who was sitting next to him.  I did try a couple of times to wrangle the R.A.  to the ground so that he would not disturb the others but quickly realized that our tussling was probably more distracting than the yowling and hand flapping.

Because it was a church meeting we began with a prayer and some hymn singing.  Ever the music aficionado, the R.A. joined us, caterwauling with great gusto.  He even added some loud solo bits.

Once the R.A. was convinced I would leave him alone he promptly hopped out of the chair and seated himself on the floor in the original spot where I placed him.  He worked a bit more on his memoirs, and then, to make himself more at home, removed his shoes and socks.  Unfortunately this was not discovered until the R.A. made a mad dash through the dining room.  I corralled him back to his corner while he protested indignantly.  The church rectory is over 120 years old and I bet I can safely say that that was the first time anyone has walked (or run) its floors sans shoes or socks.  Three times.

After the meeting I apologized to the priest about having to bring the children and he told me they were always welcome and he was glad to see them.  Other meeting attendees also came up to me and said nice things about both of my children.  I have to say that one reason I like my church is that parishioners and priests alike are very kind to and about the R.A.  And they have always been that way.  I wish the rest of the world could take a page out of their book.  This, ladies and gentlemen, is what true Christianity looks like.

Thankfully the Great Saturday Saga ended shortly after.  I am happy to report that I was not ex-communicated and no buildings were torched in the process.  All in all not a bad day.

*G2 - "Gruesome Twosome:" Affectionate nickname for my children
**Memoirs - The R.A. has a couple of those magnetic scribble boards that one can write on with its little pen and then move a lever to clear the screen.  He likes to color in every square inch of the screen while occasionally pausing to flick the screen.  We refer to this process as "working on his memoirs."  In reality these are probably intricate battle plans for when the home planet finally invades earth.

For Your Viewing Pleasure

Pretty much any endeavor for our family is a laborious exercise in frustration, exhaustion, and grit. Whether it's for business or pleasure, autism adds that special little bit of something that makes it more akin to a "Survivor Challenge" hopped up on steroids but without the fake boobs.  Yes, from the most mundane tasks like unloading the dishwasher to the heavy ticket undertakings like a First Communion, we come out the other side battered, bruised, and praying for vaporization.

So obviously, a "Quiet Night In" is anything but.  It's actually more like being held in a Siberian prison except most of those prisoners knew that there would be eventual freedom either through release or death.  I swear at times I wish we had guards in turrets that I could taunt and then have them shoot me.

This past Saturday night we attempted a "Quiet Night In."  The plan was to order out (Italian) and watch one of our DVR'd programs ("Marvel's Agents of S.H.I.E.L.D.")  On paper the plan looked good.  It appeared so simple and clean that even a pair of dopes like my husband and me should have been able to have pulled it off.

Nope.

We already knew, going into the project that there would be complications primarily due to the R.A.  The fact that we would be striving to eat AND watch television WHILE the R.A. was in the vicinity were major handicaps.  I mean, this wasn't our first rodeo.  But we have learned to adapt to our life situation.  And by adapt I mean to either have no expectations or really really low expectations concerning any and all plans.

For example:

I know that "Agents of S.H.I.E.L.D." started out with strong critical and popular reviews but within a few weeks there are grumblings that the plots are boring yet convoluted. If I lived a "regular" viewing life I might very well agree.  However, as I pointed out to my husband, we are always having to watch the show under combat conditions therefore due to  all of the R.A.'s antics we are really only getting to see maybe 1/4 of each show.  And that quarter program is pretty darn good.

Also worth noting is that the accepted rules of space and time do not apply in our house.  The typical one hour television program is actually 44 minutes long.  In our house it actually takes us 86 minutes to watch such an episode and that includes fast forwarding through commercials.  There is a lot of pausing, stopping, rewinding, arguing about whether we all saw a certain segment and, of course, loud yowlings.  The overabundance of clicker (television remote control for the uninitiated) action is directly related to the R.A.  During family television time the R.A.'s designated spot is directly in front of the TV, mere inches from the screen.  Mind you, this is only his preferred spot if it is not his show on the television.  It's bad enough he plonks his scrawny body (yet enormous head) right in the dead center of the screen, but he also vigorously jumps up and down and flaps for Britain thus ensuring that no one in the room is allowed to see the action on the TV.  To guarantee that the rest of family will be unable to follow the program the R.A. caterwauls like he is trying to communicate with the family that lives two houses down the street thus ensuring that not only can we not see the show we can't hear it either.  Any attempts by the family to move the R.A. from his spot or to quiet him are met with indignant rage.  Thus we must do a lot of pausing and rewinding because we miss so much. We then get to the point where we forgo the rewinding and soldier on, hoping that a particular scene wasn't too integral to the episode's plot.

Sadly it usually is.  Again, thank goodness for those low expectations!

This past Saturday night the R.A. was en fuego.  I mean, I am sure he even surprised himself with the level of naughtiness that he demonstrated.  If the R.A. were scored on his performance it would have been a perfect 10.

Here are the low lights:

•  Per usual, our meal was persistently interrupted by the R.A. barking food demands at us.  One demand involved me hovering on a step ladder while holding a giant bag of Dum Dums while the R.A. leisurely pawed through to find his favorites. (Note: due to his "Dum Dum Problem" we have to keep the lollies in a high cabinet above our stove which means I am required to fetch said step ladder to retrieve them.  Additionally fun when the stove is full of large and very hot pots!)  Any attempts by me to hurry him along were met with incensed reprimands.  
• When my husband arrived home from picking up our take out (yes, including the obligatory french fries and nuggets) the R.A. noticed that his father had also FINALLY picked up his longed for "Schoopees" (translation: Snoopy gummies.)  He crowed in delight and quickly wolfed down two packets and
• Because he was so enthusiastic didn't bother chewing the gummies and promptly choked on them thus
• Causing himself to throw up.  Fortunately the R.A. spends so much time vomiting he now knows to run into the bathroom and head for the toilet, sometimes even managing to throw up in the toilet as opposed to next to the toilet.  Further evidence supporting the theory that he throws up a lot - vomit does not diminish our appetites.  Cleaning up the vomit is not an abandonment of our meal but rather a delay.  Once the R.A. and the bathroom are squared away my husband and I return to our dinner and the program.
• The R.A. interrupts us again to demand "Peehockles!" (translation: popcorn.)  Because he has just thrown up I am opposed to giving him more food, particularly rough edged food that does require thorough chewing.  My husband disagrees, mostly because he is very hungry and just wants a few minutes to eat.  I relent.  The popcorn is put in the microwave and the R.A. amuses himself by racing to and fro in front of the microwave while shouting, "Peehockles!  Peehockles!" as if it is the treat of the ages.  His father then explains that in addition to giving in to the R.A.'s demand we have also bought some extra time as the R.A. engages in his peehockle microwave ritual.  At least we know where the R.A. is and it doesn't involve Sharpie markers, extreme heights, or blocking a television screen.   Genius.
• Once the peehockle is popped and ready, the R.A. eats approximately two pieces and resumes his requisite television spot.  We resume pausing, rewinding, craning our necks around the R.A., etc. 
• The R.A. does take occasional TV breaks to remove all coats, jackets, and sweaters from a nearby coat rack and railing.  He piles all of them into a huge hillock on top of which he places his medicine ball and proceeds to roll over the mound.  Yes, we should prevent him from doing this as 1. it is dangerous to roll a medicine ball over an unsteady mountain of outerwear and 2. it isn't exactly the tidiest way to treat said outwear.  But we are sooo glad to finally be able to see and sort of hear (After all, the R.A. is still loudly caterwauling in the room) the show that we don't intervene. 
• Much to our own peril.  For it is during this time that my husband and I both hear the sound of water tinkling.  We reacted at the same time and bounded over to the R.A. to discover him buck naked, standing on the medicine ball and weeing onto the floor while joyfully squealing.  

I think the R.A. sensed that he had outdone himself.  He was so pleased that he didn't even fight being hustled up to the bathroom and ultimately his bed.  His work was done and no doubt he was exhausted.

If the R.A. could have articulated it I'm sure he would have said, "Who's the real 'Earth's Mightiest Hero' now, beeyatches?"

A Living Nightmare

The R.A. is a big fan of water - he enjoys swimming laps in our bathtub (in between trying to scale the shower curtain); attempting to walk to Nova Scotia from the ocean waters of Rye, New Hampshire; and doing wind sprints in our local lake while caterwauling at innocent bystanders who make the mistake of swimming in his path.  His water activities are very energetic in a charming "I just drank 32 large espressos and downed 2 dozen diet pills" sort of way and as a result the R.A. spends a lot of time with his face submerged in the water.  We are actually very fortunate that he does not mind getting his face wet because some kids on the spectrum hate it which makes bath time challenging.

But before we get all smug and full of self congratulations over this aquatic victory, there is, of course, because it involves the R.A., a catch.  The catch is, that despite his affinity for bath water and recreational "swimming" water, he despises the rain and the snow.  The R.A. abhors it so much that when caught in a surprise rain shower he has been known to clamber up his father while shouting, "No, please!  No, please!" Any attempts to get the R.A. to play outside in the snow, especially while it is snowing, have been unsuccessful.  The last time I tried he spread himself out across the side door frame, gripping one side with each hand and bracing himself with each foot while roaring the obligatory, "No, please!  No, please!"  I had the added bonus of our mail carrier witnessing me  detaching the R.A. from the door frame.  P.S. There really isn't a convincing way to explain that one away.

Why this passionate dislike of precipitation?  Maybe it was the hours he spent working on getting his hair to look just right. It isn't easy getting those 27 cowlicks to stand up at gravity defying angles only to be threatened by rain drops or snow flakes.  Let me also say that the R.A. doesn't so much have a head of hair as a ranch for wild cowlicks.  (Not to be outdone, his sister's head is more of a halfway house for not only wayward cowlicks but delinquent snarls.)

The week of Halloween I found myself anxiously watching various weather reports.  As the day approached, meteorologists gleefully reported that yes, there would be rain but not to worry as  it would be to the north and west of Boston.  So per usual, when it comes to the local news, places other than Boston (we live north of the city) did not count.  As my father used to say, "So what are we, dog sh#*?"

I spent most of Halloween day at work in a panic. My husband was unable to get Halloween off from work.  (Or so he says.  I'm convinced he never put in for the time off preferring to go to work rather than trick or treat with the family.   Mind you, I'm not judging.  I'm just jealous that I didn't think of it first.)  That meant that I was on my own for this dreaded mission.  And, boy, did I dread it.

Originally the R.A. was supposed to be Superman for Halloween.  At his school's annual Halloween party we discovered that the Man of Steel was allergic to his costume. The R.A. is really more the Man of Tin Foil.

While I dressed/wrangled the R.A. into his backup Thomas the Tank Engine costume, he was already conveying his preference not to go out.  I attempted to chat up how great trick or treating was but he was having none of it as evidenced by his rigorous "No, please!" and insistence on "Bye, bye car, now!"

Once I finally got the R.A. out of the house he made a break for it and ran to my car while hollering, "Bye, bye, car!  Bye, bye, car!" He clung desperately to my car's bumper and I tried to jimmy him free.  While we tussled the R.A. kept screaming, "Bye, bye, car!" while I responded with a sing songy, "Trick or treating is fun!  Let's gooooo!"  We were probably the most frightening thing most families saw as they hurried past our house.

I finally managed to pry him off the bumper and we walked/shuffled/dragged ourselves down the street just as the soft drizzle turned into a full on downpour.  The R.A. howled in frustration and rage.  My hands were literally full - I had a vice grip on the R.A. and was also holding his Halloween candy bag, an umbrella, my daughter's waterlogged witch's hat and bribery Dum Dums which had been spurned.  The pair of us looked like we were doing a Quasimodo inspired two step down the road.  My daughter walked ahead of us, her only contact an irritated, "Seriously?  This is so embarrassing!" 

Despite the weather and despite the R.A.'s marked lack of enthusiasm I resolved that we were going to trick or trick, come hell or high water.   "Let's go!  Move it!  Move it!"  I barked at my daughter.  "Go on ahead!  Hurry!  Hurry!  I've got him!  Don't look back! Go! Go! Go!"  By the fourth house I realized that Eisenhower probably approached the Invasion of Normandy with more whimsy than I was giving to the trick or treat mission.  That immediately put the entire thing in perspective for me.

I realized that my determination stemmed from the desire that my daughter got to trick or treat.  When you have an Autism Family, a lot of your life is dominated by the Autism.  It controls what you do, when you do it, where you do it, how you do it, why you do it, and sadly why you don't do it.  No plans are permanent and all are subject to change.  It is a tough way to live and the biggest casualties of this lifestyle are the siblings.  My daughter has gotten to the point that whenever we have plans she is fretful that they will fall through.  When I walked in the door from work on Halloween night she was already in her costume but her first words to me were, "It's raining.  Will we still get to go trick or treating?" 

I resent adults telling kids who live in these situations crummy platitudes like you don't always get what you want in life and this is a learning experience.   Or - this is it so accept it. That sucks.  Grownups who say that are grownups who don't think kids have a right not only to voice their feelings but to have feelings.  Those grownups are often too lazy to find a better solution.  Yes, there are times when changes to plans are unavoidable but there are other times when the grownup can come up with an alternative.  We owe it to the siblings to try.  Nobody asked to have an Autism Family but the siblings are the most affected.  And the bottom line is that they are just kids and kids are not equipped to handle things like an adult and nobody should burden them with the expectation that they should.

So standing there in pouring rain while wrestling a wild R.A., I took a deep breath and made a conscious effort that Autism was not going to steam roll over Halloween.  My daughter was racing down a driveway like she was in a crucial leg of the Tour de France.

"Come on!" She panted.  "Let's get moving!"

"Stop!" I ordered.

She protested.  "We don't know how much longer he can handle this."

"Listen," I told her. "Halloween only comes once a year and you've been looking forward to it.  OUCH!" I was interrupted by the R.A. viciously chinning me.  "We are going to have as much fun as we can despite the weather and despite other complications," I said while nodding my head in the R.A.'s direction.  "Explorers on a quest did not let rotten weather or ... challenges stand in their way.  It was all part of the adventure.  Let's pretend we are on a candy quest."

My daughter observed me thoughtfully, initially doubtfully.  To be fair there are times when even I ponder my sanity.  Gradually her frown changed to a smile.  "Sounds good."

So then we lurched off into the night on our Candy Quest.  I found if I kept the R.A. moving he wasn't quite as barbarous.  While my daughter approached a door for candy, I would walk the R.A. back and forth at the bottom of the driveway.  I think it confused him because we would head in one direction and then abruptly change direction and would repeat 3 - 4 times.  I literally had him not knowing if he was coming or going.

About halfway through our adventure, thank the Kitchen God, the rain abated.  This greatly pleased the R.A. and his roars of fury dissolved into yowls of indignation peppered with insults to my mother.

One neighbor kindly remembered the R.A.'s food allergies and Autism (sounds like an Early Intervention workshop) and when we approached his house presented the R.A. with an entire bowl of Dum Dums for him to rifle through.  The R.A. crowed in delight.  If he could have dived into the bowl he would have.  I was finally able to extract the R.A. when he realized he only had two fists with which to clench his booty.  He simply could not bear to part with the lollies and put them in his bag. 

His spoils clenched in his hands, the R.A. was far more pleasant for the remaining trick or treat time.  So pleasant that he giggled and mirthfully mewled and, I kid you not, skipped down the road.  It did make me wonder just what was in those lollies (and where I could get my hands on whatever it was.) Happily, my daughter was able to hit all of the houses in the neighborhood - most importantly the one that gave out full sized candy bars.

All's well that ends well.  Another holiday tackled, stomped upon, stamped upon, and driven into the ground.  Bring on Thanksgiving!