When We Last Left Our Heroes...

When we last left our magnificently hapless heroes, they were in the throes of a gargantuan panic that threatened to make them even stupider than they were…

To recap:  The RA had discovered a new love of artistic expression using only very specific natural and organic compounds.  Our story continues…

Fortunately, just around this time my husband caught a documentary about a family that had several children on the spectrum. (My husband said he found it comforting because after watching it he felt we were the lucky ones.)  A few of those children had issues with disrobing so the parents would buy the kids footie pajamas and then cut the feet off and put them on the kids backwards so that the kids couldn’t get at the zippers. Oh my Kitchen God!  Sheer brilliance! We immediately copied this idea. And it worked. We were elated.

For a couple of days.  

Don’t ask us how, but the RA, despite the zipper now in the back, managed to unzip himself.  At first we thought maybe the issue was the PJ’s, something weird with the zipper. To make certain we tried another pair.  And another. And another, etc. (By about the third pair, intellectually we understood it wasn’t the PJ’s but we weren’t ready to admit that because then it meant we had to find another solution.)  All had the same result. We were devastated. Why couldn’t he use his powers for good?

Then my husband got the bright idea of cutting holes in the PJ’s in the back collar on each side of the zipper.  String would then be threaded through the holes and the zipper so that the RA could not unzip himself. Sure, it meant that every morning we had to cut the string like one does on a slab of pot roast but it worked!  

For a while.  

One morning we discovered another poo-tacular masterpiece and its birthday suit clad artist.  Did he break the zipper? Too pedestrian a solution. How dare you insult the immense intellect of an evil genius!  No. Examination of the PJ’s revealed zipper and string still in tact. Nothing was torn. That little stinker (again literally) had managed to contort his wispy little frame out of his PJ’s via the neck hole.  Yes, he was that skinny. For a visual think ginormous round lollipop on a very thin stick. For authenticity add hair to lolly and include many random cowlicks. May I introduce you to the most cunning future evil dictator, the RA?

My husband and I were crushed.  We had gotten spoiled with our sometimes up to three hours of uninterrupted sleep a night.  Now it was gone. We actually wept.

The RA’s dad was not going to easily surrender our hard won slumber.  In a desperate yet determined burst of energy, he took to the internet to see if there was anything we could do.  It was then that he discovered that the RA’s latest thing actually had a name and was a condition that wasn’t unique to him.  Ah, good old Autism. It always makes sure to keep the magic alive with its many surprise developments. Unfortunately none of these little gifts are ever very good or what you’ve always or ever wanted and what’s more unfortunate is that they never come with receipts.

Through his research, the RA’s dad discovered there was a company that actually manufactured special suits for children that prevented them from disrobing because the suit was worn over clothing. The suits looked like those surfer wet suits that go to the knee.  They zipped in the back. There was also a more secure version that had a snap similar to those on fanny packs but over the zipper.

SOLD!

Being well acquainted with the RA’s diabolical genius, we went for the bad ass version.

This special article of clothing was fondly christened the “poop suit.”  For double protection it was worn over a pair of backward footie-less pajamas.  Anytime the RA was placed in his lair, at bedtime or during the day (for a caretaker emergency like needing to use the bathroom), he was kitted out in this special ensemble.  It was very much function over style. And it worked great.

For awhile.  

One morning we woke to find Pablo Poopcaso, covered from head to toe in poo, had smeared another magnum opus.  This time our grief was so acute we actually keened.

My husband contacted the company where we had purchase the poop suit thinking there was probably an upgraded version.  The very nice Canadian lady cheerfully told my husband that there was indeed another more secure edition. She then began describing the suit we currently had.  My husband let her finish her spiel and then said that was the suit we owned. The nice Canadian lady was pretty gobsmacked. “But that’s our most secure and most high end suit,” she sputtered.  My husband asked what other families did when their children were able to liberate themselves from that suit. The nice Canadian lady said she didn’t know because nobody had ever managed to free himself from the suit.  My husband said the nice Canadian lady had immense difficulty wrapping her head around the whole thing. By the end of the conversation her mind was so completely blown that she pretty much kept muttering, “But I don’t understand.  Nobody ever gets out of that suit.” My husband finally had to hang up on her in mid mutter.

There goes the overachieving RA, again.  Doing something that no one in the ENTIRE continent of North America had ever done.  At this point I was so distraught that I told my husband I envied parents of dumb kids.  Why did the Kitchen God curse us with a genius and an evil one at that? What I wouldn’t give for a paste eating underachiever!

Again, my husband was not going to give up without a fight.  We had come too far to give up those hard won two and a half to three hours of almost uninterrupted nightly sleep.  It was our darkest hour and not just because it was literally in the middle of the night. As Winston Churchill spoke so inspirationally during Britain’s darkest hour, so too did we:

We shall defend our sleep, whatever the cost may be (as long as it’s not too pricey), we shall fight in the bathroom, we shall fight on the poopy ground, we shall fight on top of the China cabinet and on the upstairs bannister that is missing a few slats due to the RA’s removing of them, we shall fight on top of the TV that is on top of the RA’s dad’s bureau; we shall never surrender.

Or at least we would die trying which at this point I think my husband and I were not completely adverse to because at least we would finally get in a decent nap.

It was while possessed of this fighting spirit that my husband came up with another idea.  Why not modify the poop suit? He sketched out a few ideas and consulted a professional tailor.  Together they devised the Poop Suit 2.0, a magnificent creation that blended aeronautical technology with Arkham Asylum inspired super villain straight jackets.

Basically the tailor sewed a collar over the poop suit’s collar through which we thread a shoelace.  The shoelace was then thread through an opening in the zipper to which was attached a tiny lock. And voila!  The Poop Suit 2.0 (patent pending.)!

The first time we put the RA in the PS 2.0, he was bemused.  He also gave us clearly patronizing looks, “What’s this? Oh, my naive, dim, dolts.  Will you never learn? How long do you think your precious little suit will last?”

After a couple of weeks his arrogant smile turned into a frustrated sneer.  It appeared that the RA had met his match. Now our biggest foe was the key which we sometimes misplaced.

Not one to be bested by his imbecilic parents or a mere piece of clothing, the RA did have moments of revenge.  He had figured out that when his poo presented as a solid stool he could somehow finagle it down his PJ leg and out that way.  That’s true dedication and a real never give up attitude. Fortunately, due to the massive amounts of laxatives and stool softeners pumped into him, those occasions, which we referred to as the  result of doing the “Poop Suit Boogie,” were rare.

Unbelievably, we had conquered the nighttime poo painting workshops.  Believably, no one was more surprised than we were. Well, probably the only other person was the RA.

Oddly enough, poop masterpieces were not our only nocturnal challenge...

Now Where Were We?

Now that we’ve got the celebratory hoo haas about Autism Awareness Month over with, let me continue the saga of how the RA ended up in residency.  Like most old Norse sagas it does involve horned helmets, dragons, walking casts, and poop suits. Ok, maybe no horned helmets or actual dragons are in the tale but I think it could be argued that Autism is as frightening and formidable as any dragon if not more.

So now you’re like, “I get what a walking cast is, but what is this poop suit of which you speak?  Patience, gentle reader. Believe me, by the time I explain it you are going to wish I hadn’t.

Let me ask you a question.  Are you familiar with fecal smearing?  If not, get down on your knees right now and offer a prayer of glorious thanksgiving to the Kitchen God or deity of your choice.  If you wish to go on and live a happy carefree life unscarred by the mental images of fecal smearing, stop reading and go browse your Netflix account.

Fecal smearing is a delightful avocation that fully engages the child’s sensory and tactile experiences as well as providing an opportunity to work on his fine motor skills.  Basically the child poops and then uses the poop like finger paint. I know, fun right?

So in addition to keeping the RA safely contained in his lair, we now had the extra delightful challenge of fecal smearing.  Ok, I lied. It wasn’t delightful. It didn’t help that the RA was an overachiever and very thorough. He would strip, poo, and then get to work.  His preferred canvas was the traditional floor and wall but ever the avant garde artiste, when creating his floor work, his tool of choice was his toes.  Tip: if you want to get in some good smearing, toes are the way to go, especially if, like the RA, you are blessed with monkey toes. There is also the added bonus that when one uses one’s own tootsies, he can then march around the rest of the room leaving poopy paw prints.  The RA’s favorite medium, however, was his own body. After a smear fest he often looked like a brown Braveheart. And probably smelled like a medieval warrior.

For  reluctant astronaut-care, my husband and I worked different shifts, still do.  I work days and he works nights. When it came to taking care of the RA, we used to say that I had the night shift and my husband had the day shift.  The night shift was always a tough gig but with the advent of the RA’s FS, it became an onerous and grueling undertaking. I would put the RA to bed and pray he wouldn’t feel the need to create.  Then I would lurk in the hall outside his room listening for activity and also sniffing the air, hoping to head an episode off at the pass or at least catching it in the earlier stages so there would be less clean up.  Of course that little stinker (literally) was far cleverer than I and much faster. Once I realized the RA had outsmarted me, again, I would have to haul him out of his room, carefully avoiding stepping on/in his masterpiece and attempt to pick up and carry a wriggling, indignant, naked, poo covered artiste without getting part of said masterpiece all over myself.  Let me just say Sisyphus had a less impossible task than I.

After finally making my way out of his room, I would deposit a squirming RA into the tub.  Fortunately it was one of his favorite spots. I would bathe him and leave him to soake. Then, regardless of the time, I would have to get my daughter to sit with him while I cleaned up the masterpiece.  I couldn’t leave the RA alone in the tub for safety purposes. Yes, obviously a child should never be left unattended in a bath but the RA couldn’t be left alone because he always had to up the ante which in this case meant either bolting from the tub soaking wet to climb the China cabinet or climb the shower curtain and/or bathroom fixtures.  My daughter also had to monitor the poo situation while the RA lounged in the tub because while he wouldn’t be caught dead pooing in the toilet, the bath was a completely different story. When this happened my daughter would shriek for me. I would race into the bathroom and tussle a wet and slightly poopish RA from the bath. The RA protested not just his removal and interruption but my nerve at attempting to place him on the despised toilet.  

“Really, Mommy Girl?  On the abhorred toilet?  Are you not paying attention?  The toilet is my mortal enemy! Part of the reason we are in this literal mess is because I detest that thing!”

One of the best things about the endeavor was sometimes we engaged in the entire enterprise more than once in an evening!  Yes, it was as exhausting and as spirit crushing as it sounds. And I’ve given you the less traumatic version of the experience.

This kid got bathed so often it actually took a toll on his alien skin.  Once time my husband took the RA to a doctor’s appointment for some sort of unrelated ailment and the doctor remarked that the RA had remarkably dry skin for someone so young and he was prescribed special skin cream.  It’s a good thing that my husband took the RA that day because as the RA’s main night time spa attendant I probably would have barked, “Hey, you’d have skin that rivaled that of an armadillo if you took 37 showers and baths a week!”

Even though some could argue that we had finally found the RA’s “autism thing” (you know, that extraordinary talent that all people with autism have - think the movie “Rain Man”), the RA’s dad and I were not going to encourage this new artistic calling.  We had to come up with a solution to prevent the RA access to his art supplies. And fast.

Further adding to the merriment (and need for a quick fix) was the RA’s commitment to constipation and utter disdain for the toilet.  This often meant he “withheld” his bowel movements. When tucked in his lair at night the RA would un-withhold his bowel movement. And because he refused to go all day, the RA was holding on to quite a supply of “material.”  My husband and I were amazed that a body so small and scrawny could store so much poo. I swear there are water buffalo out there that couldn’t compete.

Let me tell you, a fun night of pooing, painting, and bathtub frolics really energizes a reluctant astronaut.  So despite the fact that I was utterly debilitated, the RA was fully reinvigorated and ready to party the night away which in this case meant jumping up and down on my bed like a lemur who just ingested sixteen gallons of espresso accompanied by seven dozen extra sugary jelly donuts while yowling manically at the top of one’s lungs.  There’s nothing like a satisfying session of fecal smearing and three showers to get the blood going in the wee hours of the morning.

We had to find a solution.

Who will win in the Un-Great Battle of the Poo?  Will the new “Napoopleon” emerge flappingly victorious?  Or will his harried yet completely incompetent parents stumble across a “Waterpoo” and finally halt the RA’s nocturnal destructions? Or will they just finally die of exhaustion in the attempt?

For the answers to these and other seemingly unrelated and certainly uninteresting questions, stay tuned!

Haul Out the Brass Band and Confetti Cannon

That’s right.  It’s finally here - Happy Autism Awareness Month or as we call in my house, April, because EVERY month we live autism awareness and spread that awareness wherever we go much to the horror and confusion of those left in our wake.

During April my family especially takes the “Awareness” part to heart.  We are of the opinion that since “Awareness “ is right there in the title, it’s our duty to go out into the world spreading the “Awareness” and we really go whole hog.  The louder and flappier the better.

People new to Autism Awareness Month might be uncertain as what to do during this celebratory month.  While there are some generally accepted traditions and practices such as lighting things up blue and slapping puzzle piece magnets declaring you love someone with autism everywhere, there is still much room to create one’s own expressions of Autism Awareness.  Like they say, “If you’ve met one person with Autism, you’ve met one person with Autism” so your expression can be as unique as your own family’s Autism Experience. The beauty of it is, like Autism there are no hard and fast rules. And if there were, like Autism, these rules would be arbitrarily subject to change and with no explanation.  

The main thing during AAM, is to turn any and all occasions, from the informal to the formal, into opportunities to spread that awareness.  Since it is AAM and we only get the one sanctioned month, it is important to do it up big.

I think during AAM there ought to be business cards available for families to hand out during these “awareness moments.”  They should read something like this:

Happy Autism Awareness Month!  

We are so thrilled you are celebrating this special time with us and sincerely hope you have enjoyed being made aware as much as we have enjoyed making you aware.

We’re here. We have Autism.  Get used to it. Or get out.

You may still be uncertain as how to proceed so I’ve come up with suggestions based on my family’s experiences but feel free to adapt to fit your situation:

At the Movies

The R.A. is a great fan of the movies.  Well, not so much the movies but the seats which are now recliners.  One of the last times we went, the R.A. proceeded to engage in “recliner gymnastics” performing handstands and reverse somersalts in the seat.  While tumbling around he also engaged in a one man yodeling demonstration. Due to the hardy exertion of these endeavors he also took many well deserved breaks that consisted of jumping up and down rigorously while loudly demanding snacks.  Since it was not AAM I had to sheepishly apologize to everyone in our vicinity and wrangle the R.A. out of the theater while simultaneously attempting to creep quietly out of the theater which was unsuccessful due to the R.A. bellowing, “Moobie!  I want moobie!” Had the same event transpired during AAM not only would we not have left but we would have stayed for a second film.

At the Mall

One of the RA’s favorite places is the mall, specifically the food court.  He quite enjoys watching the parade of humanity pass by. It is such a tremendous occasion that the RA really outdoes himself with the jumping, flapping, and yowling.  His enthusiasm simply cannot be contained. “Oh my Kitchen God! Did you catch a load of that freak?!” He is so hyped up that he has a hard time eating. Sometimes the RA really can’t contain himself and he literally will leap from his chair into the oncoming pedestrian traffic.  The poor unsuspecting soul he lurches at tends to be on his or her device and completely blindsided by this human cannonball. There then proceeds shrieking from both parties, the RA’s with joy, the mall patron with terror. Sometimes, if the RA is lucky, there also follows a bit of impromptu “device juggling” as the mall patron usually loses his/her grip on his/ her device during the ambush.  Good times!

In non AA months, my husband or I would leap up and attempt to corral the RA while sputtering apologies.  But during AAM we would just let the moment ride out and conclude with smugly handing the poor S.O.B. an AAM card while saying, “You’re welcome.”

At a Dance Recital

Fortunately, we dodged dance school because my daughter selected gymnastics.  Although we did have an annual show it was not the sixteen and a half hour extravaganza that dance audiences are subjected to.  Instead it was a mere three hours. We still had to adapt the experience to fit the RA’s tastes. We had to sit in the bleachers in the tippy top row.  These seats had to be on the end closest to the lighting because the RA took his job of inspecting the gel lights very seriously. We were also high enough up that the music and crowd drowned out the yowling and barking of snack orders.  Being on the edge also meant nobody noticed when the R.A. lobbed suddenly offensive snacks or gym show programs over the side rails.

But for those of you who do have to suffer through attend a dance recital, might I recommend:

When your child with autism proceeds to leap onto the stage and knocks over the preschool ballerinas, let him.  As the “Lord of the Lurch” hops about, turn to everyone around you and with gusto declare, “Happy Autism Awareness Month, everyone!  I hope you enjoy the celebration of free expression and dance that my son has brought to the performance. I would retrieve him but since it’s Autism Awareness Month and this is an officially sanctioned Autism Awareness Moment I am afraid I cannot.  Might I suggest that next year you consider holding the recital in March or May?” Then clap with extreme enthusiasm while shouting, “Bravo!” and “Encore!” Don’t forget to hand out the AA cards.

At a Wake

The RA loves boxes.  He enjoys cramming himself into them and rocking violently until he tips over a la bobsled rider on crank.  The RA’s current favorite toy is our laundry basket. He likes to curl up and place the basket over as much of him that it will cover.  The R.A. then wiggles his fingers through the basket’s lattice and demands tickles.

Some might think it inappropriate to spread Autism Awareness at a wake but I think death is a poor excuse of trying to weasel out of being made aware.  Just because someone is dead doesn’t exempt him or her from AAM.

The RA would LOVE a wake primarily because of the casket which to him would be nothing more than a box with a lid or as he would no doubt deem it, a dream come true.  It even comes with a pillow! It just keeps getting better! All I can say is, the RA would not be above removing the casket’s current occupant. That would be the ultimate AAM experience and an unforgettable wake.  Now that I think about it, I believe I have just described my own wake. I am also sure my family will allow the RA to unceremoniously dump me out of the casket and hop in because at least he would be occupied so they could enjoy the wake.

I hope that you’re now thinking about your own AAM.  From the rocky shores of New England across this great country of ours to the majestic forests of the Pacific Northwest, let the flapping, yowling, lurching, and leaping commence.

Happy Autism Awareness Month!

You’re welcome, America.

How Did We Get Here, Part I

In my last post I alluded to various factors leading to the RA’s residential placement.  So many to choose from! I could have a separate blog just for that: “The Great Escape - RA Edition” or “The RA’s Liberation from Dopeville” or “ It’s Hard to Believe But Those Two Are as Dumb as They Look and If I Have to Live with Them Another Second I Swear I am Going to Disembowel Myself with a DumDum Which in This Instance Would Be an Aptly Named Tool for Suicide (or Matricide/Patricide.”)

As you may or may not recall, the RA was an amazing escape artist.  Harry Houdini would be envious. For his own safety we had to adapt his room.  Initially this involved removing the furniture because he used it to perform death defying acrobatic feats that would have made the Flying Wallendas go, “Damn!  That’s too crazy even for us!”

So except for the mattress, we removed all of the furniture.  Then, so that we could have a visual on him, my husband and his dad built a half wall with a locking cottage door down the middle of the room.  One side had the mattress, stuffed animals, some Thomas trains, and a trampoline (a typical bedroom staple.) The other side had the bureau, a rocking chair and more toys.  Essentially we created a very large play pen.

This penned in section of the room was also a safety measure.  The RA was so active and so devoid of fear yet possessing a plethora of naughtiness, that he had to be monitored constantly and by constantly I mean one had to literally stand next to him which didn’t necessarily prevent him from engaging in undesirable activities but did mean his caregiver was physically close enough to limit the amount of destruction or at least get him down from the roof in a timely fashion. So when a person was “on duty” it was impossible to do anything else like laundry, clean the bathroom, use the bathroom, engage in daily hygiene, sleep, etc.

When the RA was a day student, my husband would get him off the school bus and pass him off to his after school ABA counselor who would work with the RA for two hours.  While that was going on my husband, who works second shift, would head into work. My mother, who was also unfortunately incarcerated with us in the POW camp, was also at home.  A grown up family member had to be at home while the ABA counselor worked with/tormented the RA. I was at work and would literally race home, Grand Prix style, to try to make it before the counselor left.  If I didn’t make it in time, the counselor would deposit the RA into his room because he was too much for my mom and daughter to handle. I know, shocking, right?

Ever the resourceful little imp, the RA was not going to allow lack of hard furniture to impinge upon his gymnastic endeavors.  One day while at work, I received a frantic phone call from my mother. The counselor had to leave the session early so she put the RA in his room.  My mother was panicking because somehow, yet not surprisingly, the RA had escaped from his room. Myself now panicking, I yelled something incomprehensible at my boss (This is true.  The only thing my boss could make out was my son’s name. She was fairly well informed about him and assumed something crazy and possibly awful had gone down.) and literally ran out of the building.

My commute is approximately 30 minutes, on a good day.  If traffic is bad that can add 15 to 30 minutes. Let’s just say that day I made it home in under 30 minutes.  We won’t explore the details of that little miracle.

When I got home my mother anxiously explained that she was in her first floor bedroom when all of a sudden the R.A. appeared outside her door.  My daughter tried unsuccessfully to corral him back into his room but he just was not that interested. He helped himself to some snacks and disappeared back upstairs.

“I think he’s in your room now,” whispered my daughter.

As I slowly proceeded up the stairs I couldn’t help but think this must be what it’s like when a rabid raccoon gets into your house.  I wished I had a tranquilizer gun. Not so much for the RA...

My bedroom was dark.  I could hear the RA breathing as well as some minimal movement but didn’t see him.  I called out his name and he responded, “I tuck” which roughly translated means, “I’m stuck.”*

Following the sound of the RA’s voice, I now noticed two glittering eyes in the darkness.  The RA was sitting on top of a television that was on top of my husband’s bureau, a favorite perching spot - for the RA, not his dad.  Instead of “Elf on the Shelf,” my husband called it “Gnome on the Bureau.” I referred to it as “Gargoyle on Notre Dame.”

Once on his perch, the RA is indeed stuck.  I confess that there have been times I have left him up there for a few minutes because:

I knew his location 

I knew he couldn’t get down and head somewhere else

I knew he wouldn’t fall due to his freakish defiance of the laws of gravity agility 

That’s how badly I had to use the restroom

I needed to examine the scene of the crime so I left the RA where he was and ventured into his room.  The cottage door was still closed and locked. I opened the door and went inside to investigate. Propped up next to the half wall was the RA’s mattress.  He had used it like a ramp. Placing the mattress at an angle, he then must have run up the mattress and hopped over the wall to freedom. The RA didn’t know what a napkin was for but he already had an advanced understanding of physics.

With this new development, we were officially up the creek.  This meant there was no safe spot to put the RA. We were also terrified he wouldn’t just roam the house tagging walls with black Sharpie graffiti art or helping himself to snacks, but that he would bolt from the house.

So the height of the wall was extended.  We thought this newest home improvement required the skills of a professional so we called in the services of my cousin’s husband who worked in the building trade.  He and another cousin not only extended the wall but also covered over the windows and the window sills with poly glass because we were afraid the RA would escape out a window. (And a special “You’re most welcome!” to our neighbors who no longer would be subjected to naked RA window time.  No one can accuse us of not being thoughtful neighbors.)

With the RA’s room fully secured we could now relax.  But even we weren’t so dim as to think everything was fine.

In our next installment you will learn more.

That is if you have the guts.

Or at least lots of free time.

*Full Translation: Where the hell have you been?  I’ve been stuck up here for hours. Don’t just stand there like a drooling idiot!  Get me down immediately if not sooner! Oh my Kitchen God, what is wrong with you?!”

Like a Bad Penny

Well, it’s been awhile.  Five plus years. A lot has happened in those years, some good, some bad (I leave it up to to decide which is which.)

• The election of a new president
• Brexit
• Cubs snap an 108 year losing streak to win the World Series
• A papal visit
• The advent of man buns (OK, I know I said I would leave it to you to decide good or bad but these are just inarguably awful, an ahborrition really. They just should never have been.)
• A government shutdown (OK, again I know I said I would leave it up to you but seriously, how could anyone, regardless of political affiliation, think this was a good thing? Eyes on you Wilbur Ross.)

So where have I been?  Unfortunately, no, I wasn’t out on the mean streets wielding a pair of scissors as a man bun clipping vigilante but boy do I wish I had.

Perceptive readers may have copped on that life with the RA was manically action packed. Much like Vegas, our house was open for high jinx and hilarity 24/7 sans drunken bachelorette parties or Celine Dionne.  And unlike Vegas, what happened in our house didn’t stay in our house. Undoubtedly to our neighbors’ collective dismay. Particularly naked window sill time.

The truth of the matter is the RA was getting older, minimally larger, and more active.  As a result I became increasingly worn down physically, mentally, and emotionally. By that last post in December of 2013, I was beyond even running on fumes.  Not only was I exhausted but so so so damn sad. I had less time and energy to blog and frankly no desire. I couldn’t see the funny in it any more. I always hated autism.  Some “autism parents” consider “autism a blessing” and “autism is a part of my child like the color of his eyes.” I was never and will never be one of those parents. I don’t  and won’t embrace autism as a part of my child. Autism is the enemy and doesn’t deserve a hug. It is a shroud that envelopes the RA and prevents him from being who he truly is.  My son isn’t autism’s sole casualty. The entire family is stricken. We are all its captives and victims. Especially my daughter. In this whole autism mess I firmly believe it’s the siblings who get the rawest deal.  Their lives are full of chaos and they never get the attention they desire or deserve. When it comes to autism, siblings are collateral damage. Autism is a greedy monster. It steals dreams, possibilities, and time.

It is not uncommon as severely autistic kids age they become harder for families to manage.  They are physically bigger and sometimes behaviors can become more troublesome and even safety issues for the child.  Although the posts for this blog are amusing (and unbelievably true), it was quite evident that the RA was a bit of a handful.  OK, he was two handfuls - and that was on his “easy” days. As the RA aged his handfuls increased in size and amounts. And because for him variety is not so much the spice of life as the arsenic of life for his dim witted caregivers, the RA added new behaviors and activities.  You thought based on past blog posts that my husband and I didn’t know which end was up? As time progressed we didn’t know where the end was. We basically were living each day in survival mode. It was all about trying to get through each day. The quality of life for the entire family, including the RA, was terrible.  In short, we had no, life. But autism was thriving. The beast had completely taken over all our lives.

It was the RA’s school who encouraged us to move him into the residential program.  Despite the state of our life, my husband and I were not eager to do this. Although a dictator, he is our little boy and we believed nobody would take as good care of him and certainly not love him as much as we did.

But then a couple of things happened that made us cowboy up and really look at the situation.  One of the most painful things we had to accept and admit was that someone else could take better care of our son.  One of the most painful yet selfless things we have ever done was put the RA into the residential program.

Although placing the RA into the residential program was one of the most excruciatingly traumatic decisions we ever made, ultimately it truly was the best one for him.  In that environment not only does he thrive but he is happy. In the house where the RA lives, he is referred to as the “mayor.” He is personable and funny, a sheer delight.

But fear not, gentle reader.  The RA has lost nothing of his mischievous naughtiness and my husband and I are still his unwitting servants/court jesters.

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. 

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.