So what is it like having a child with autism?

So, what is it like having a child with autism?

I get this question a lot and actually like it when people ask. Unless a person has significant contact with someone on the spectrum he/she doesn't really understand what an autism driven world is about. Saying that, it isn't always easy to convey what having a child with autism is like. After much consideration, this is what I've come up with -

For me, having a child with autism is like living with an alien from another planet. I call him the "reluctant astronaut (R.A.)" because he really didn't want to come to earth, had absolutely no interest in this space mission. As a result, he didn't pay much attention at the briefings prior to the mission so doesn't know anything about Planet Earth - nothing about language, customs, or Earthling niceties in general. In fact, he is so disinterested in Earth that even though he was sent here, he has absolutely no desire to assimilate into Earth society. Meaning he still doesn't give a rat's ass about Earth mores.

That's also how I "explain" things he does that are pretty much unfathomable to me. For example - for a certain time period he liked to sit in the toilet. No, not on the toilet but in the toilet. I reasoned that on the home planet the toilet is a jacuzzi. Although eventually we managed to break him of this habit, the jacuzzi explanation popped again during potty training when the R.A. demonstrated not only an aversion to the toilet but would have all out nuttys when placed on one. He was probably thinking, "Poop in the jacuzzi? What is wrong with you people? Miscreants!" That's what he would say if he could speak English or any Earthing dialect.

For a time I was also convinced that not only was he a reluctant astronaut but was actually an alien cat that somehow ended up in a human body. It does make sense -

Cat

Has to everything his way

Reluctant Astronaut

Ditto

Cat

Don't touch me!

Reluctant Astronaut

Ditto

Cat

Doesn't speak human language

Reluctant Astronaut

Ditto

Cat

Doesn't wear clothes

Reluctant Astronaut

Ditto (Well, would if he had his way)

Of course I don't really believe my son to be a Reluctant Astronaut.

But sometimes it sure makes sense!

Disclaimer: Although I sometimes describe things about life with my R.A. in a humorous way, please understand that I am not laughing at him. He is my son and I love him very very much. I come from a family that had its share of challenges and I learned from a young age that laughter is powerful. A situation cannot completely hurt you if you are able to find humor and laugh at some parts of it. So that's what I do. And I don't use humor solely with the R.A. My daughter was born with a heart condition that required immediate surgery. (No, I don't make good babies. They come out broken.) She was whisked away by ambulance to the hospital in Boston. It was all unexpected and traumatic. A nice young intern came to speak with my husband and me and was re-assuring us that nothing we had done caused the baby's condition. The stress and sorrow were overwhelming. When the nice young intern concluded I turned to my husband and said, "See, I told you it wasn't from all that smack I did during my pregnancy." The intern froze and then let out this huge belly laugh. Was I appropriate? Probably not. But I had to do something to relieve the stress. Astronaut life is stressful so find the laughter where you can.
And as G.K. Chesterton said, "Humor can get through the keyhole when seriousness is still hammering at the door."

Friday, April 27, 2012

Nothing to See Here

This afternoon I was puttering around, having a swell time for myself doing laundry and washing water bottles.  The R.A. was upstairs.  Since doing the laundry required running up and down the stairs at frequent intervals, I let him remain on the second floor "alone."  He was also clutching the "Stick of Infamy" and in addition to waving it wildly would tap and whack it on the floor so I could hear his exact location above me - "Tap, tap, wham, wham!"  Okay, he's in the hall.  "Tap, wham, tap!"  Now he's moved to his bedroom, "Whack, whack, tap, tap, tap!"  He's migrated to my room, etc.  It was like a primitive ancestor to sonar - if sonar came with caterwauling.

At one point I remained on the second floor for an extended period of time, frolicking in my room as I sorted laundry.  Since we were now pretty much on the same floor at the same time (except for those moments when the R.A. would march up and down the stairs, yowling and whacking the stick - he was either trying to rally the troops or somebody is in for it - I hope it's not me) I admit I relaxed my R.A. vigilance.  I suddenly realized I had not heard any whacking in a while.  Off I bolted to investigate.

I found the R.A. in the bathroom.  He was seated in front of the cabinet underneath our bathroom sink.  The minute he saw me he shoved closed the drawer that had been previously opened and gave me a quasi- innocent look that said, "Hey, what's up?  Not doing anything here.  Just hanging out in the bathroom, checking out the fine design of this bathroom cabinet.  What is this wood, balsa?  Nice, very nice.  You can go now."  Despite the R.A.'s quick silver reflexes, I had caught him examining certain items in said drawer such as a couple of screw drivers and a very large hammer.  He was doing a pretty thorough appraisal, lifting them to the light, running his fingers over them.  The R.A. had a look on his face that said, "Humph.  Interesting."  He was in deep contemplation which explains why he didn't hear me coming.

A few things come to mind as I reflect on this:
  • The R.A. has joined an intergalactic mob outfit as an enforcer and will use the tools in threatening ways to shake down "clients."
  • The R.A. will use the tools in threatening ways to shake down his parents/caregivers.
  • The R.A. will use the tools to make his great escape.  
Initially I thought since the R.A. doesn't know what a spoon is for, it will take him a while to figure out how to use the tools.  After briefly thinking about it (8 seconds) I quickly recognized that the R.A. possesses superior intelligence when it comes to figuring out those things we would classify as "naughty."  Therefore, he doesn't know what a spoon is for but I'm absolutely certain that if I left him unattended with the tools for a minimum of 6 minutes he will have removed both banisters from the second floor stairway and disassembled the microwave.

So, currently, I have the R.A. with me in the living room.  He is multitasking - pacing, yowling, stick whacking AND eating Pringles.  I know the R.A. is biding his time until he can race back up the stairs to the bathroom and get his hot little hands on the tools.  I am biding my time until I can put him to bed and hide the tools.  Of course the R.A. will find the tools within a short period of time and thus we will have created another exciting and action packed game - "Where Are Those Items You Don't Want Me to Have Located Now And Don't Bother Trying to Fool Me Because You Have the Intelligence of Summer Squash That Has Gone Bad?"  I predict it will almost be as much fun as "Turn Off That Light Immediately If Not Sooner And I Don't Care If It's Pitch Dark and You Are in the Shower Attempting to Shave Your Legs!"



Saturday, April 21, 2012

I Hope the Kitchen God Is of the "Smiting" Dieties


The R.A. has been on vacation this past week.  This means his entire schedule is kaput.  Thankfully the R.A. is a very laid back, roll with it kind of guy so such an upset doesn't matter.

Yeah, right.  In ancient times people would sing funeral dirges.  This past week the R.A. has been mourning the loss of his schedule so he's been engaging in his own dirge-like caterwauling.  It's very sorrowful yet "nails on chalkboard" like.

Yesterday we had to run errands.  Unfortunately none of the errands involved getting french fries and nuggets from McDonald's.  I noticed that I was driving hunched over and white knuckled.  After a while I realized I wasn't stressed out from navigating the chaotic streets of Lawrence but due to the R.A.'s wails.  With the passing of each mile that didn't involve procuring the fries and nuggets, the R.A.'s yowlings increased to the point that I thought they would shatter the windshield.  A short time later I actually wished the windshield would shatter and pierce my ear drums.

After our errands we took the children to a park in town.  Initially the R.A. was not on board with this, demonstrating this by shrieking and refusing to get out of the car.  One would have thought we had planned an impromptu trip to the dentist for recreational root canals.  My husband attempted to coax the R.A. out of the car.  Nerves stretched very thin, I observed their fruitless interaction ("Come on, buddy, come out and play."  "NOOOOOO!" Repeat.) for a good 6 seconds before snapping at my husband, "Don't give him a choice.  Just carry him out of the car."

The "up" side of roaring into the park, our own four person "Dysfunctional Pahloozah," is that the park clears out pretty fast and we get all the equipment to ourselves.  By the time we finally schlepped through the parking lot, the family that had been there had scurried away.  Cowards.

Once on the Terra Firma of the playground, the R.A. immediately calmed down.  He smiled delightedly as he hung in inappropriate ways from railings.

As it had been a bit of a trying morning, we let our daughter select where we would go to lunch - provided her selection was located near a McDonald's.  I won't say the actual name of the establishment.  To protect the innocent I will only refer to it as "Pizza Shack."

Off we went, making the requisite McD stop first.   We gathered that the R.A. was disappointed by the long line at the drive-thru,  basing this on the R.A.'s shrieking, rocking, and smacking himself in the head.  As both my husband and I now had the shakes, we moved onto Plan B - my husband running inside to get the food.  We looked like something from a S.W.A.T tactical sweep.   I gunned it around the parking lot, my husband jumping from the car (which I don't think I had stopped) and racing into the building.  He was gone approximately 3 minutes during which time the R.A. caterwauled and rocked wildly.  The R.A. was so wound up that even when his father fell back into the car, huffing and sweating, waving the bag of food, the R.A. could not calm down.  But we were a family with a plan - so grimly we carried on.  We were going to have pizza come hell or high water.

Let's just say this time the hell or high water won.

Once in the "Pizza Shack" parking lot we played another rousing round of  "Come on Buddy, Come Out - NOOOOOO!" the meal time edition.  We dragged ourselves into the restaurant.  Naturally as it wasn't very busy we had to wait for a table.  By this point the R.A. was suffering from extreme rage exhaustion and only sporadically yowled.  This meant we got to enjoy withering looks from a retired couple at a nearby table.  I was two seconds from plonking the R.A. down at their table out of sheer spite but luckily (for them) the wait person finally sat us, her look rivaling that of the crabby couple.

It seemed our bottoms had only grazed the seats when my husband popped back up again, his face very red.  Not a good sign.  I was busy getting my daughter settled and missed the beginning of the exchange between my husband and the wait person.  Apparently she had informed my husband that "outside" food was not allowed.  My husband explained that the R.A. had autism and had food issues. I tuned in when she countered with a shrug and "I don't know what to tell you but we don't allow outside food."  At this point my husband's face actually got redder.  He sputtered back, "This is the first time we have ever had a problem with this."  He was rewarded with another disinterested shrug.  Meanwhile the R.A., who had begun eating his long awaited for chicken nuggets and fries was taken aback when they were scooped up by husband.  Both the R.A. and I were so stunned (for different reasons) that neither of us uttered a sound.  As my husband's face was getting redder by the nano second and the R.A.'s shock would be quickly fading and no doubt replaced by shrieks, I thought it best to get the hell out of Dodge.

Seeing that my husband's face was now a lovely shade of puce I insisted that I would discuss the matter with the manager and instructed my husband to take the R.A. out to the car.  If I hadn't been so flustered I would have instructed him to sit the R.A. down at the crabby couple's table.  "It's Autism Awareness Month, Haters!  Consider yourself made aware!  Shut up and pass the ketchup!"

Fortunately I was still in shock so I appeared calm.  Strangely enough, in moments of crisis people tend to remark at how composed I am.  I'm not composed -  I'm usually suffering from amazement and attempting to process what has transpired.  I'm just lucky that I don't have a "What the hell just happened?" expression on my face that mirrors what I'm thinking.

I marched over to the manager and explained what had happened.  Instead of ranting I decided that I would use the opportunity as one to educate a "civilian" about autism. I spoke calmly and rationally about what a disappointment our treatment had been and how staff needed training in serving special needs families.  I must say I sounded pretty good -  like something from an "Autism Speaks" PSA.  The manager appeared almost interested.  He did successfully stifle a yawn a couple of times.  I think it was only the fear of being bored to death that made him finally say, "You can stay," which only further illustrated that he just didn't get "it."  I had just finished explaining that we had to remove a highly upset autistic kid from the restaurant and now he wanted us to bring said kid back?  At that point I was tired of talking to him and I shrugged and left.

Once we got home I did send a very calm e-mail to Pizza Shack's corporate office.  As of this writing I still have not heard back. 

Apparently, my complaint about the treatment of Special Needs families by Pizza Shack is not one they consider important enough to acknowledge.  Therefore, I propose we make them aware of the importance and stage an all out "Autism Awareness" dine in.  We bombard Pizza Shack restaurants with our family members on the spectrum.  We go without our survival kits (i.e. - backpacks and lunch bags loaded with acceptable activities and foods.)  We sit anywhere they sit us and don't make a peep about better seating options that will decrease our ASD kids having an episode and disturbing other diners.  I even propose we let the ASD kids with dairy allergies eat the pizza and let the vomit fall where it may.

WE WILL NOT BE IGNORED!  WE'RE HERE!  WE'RE NOT MAKING EYE CONTACT!  GET USED TO IT!

Happy Autism Awareness Month, Pizza Shack.  May the Kitchen God have mercy on you.




Saturday, April 14, 2012

Happy Easter!

I know I haven't posted for a while.  Depending on how you feel about this blog it's either a bad thing or a very good thing.

The week before Easter the R.A. was felled by yet another earth virus.  My husband said he must have gotten his dates mixed up as it was the week prior to a holiday.  The R.A.'s usual M.O. is to court illness either during a holiday or special occasion or immediately before so that it drastically impedes the celebration.  It's all part of his master plan to take over the planet.  This part focuses on psychological warfare.  FYI - It does work because now my husband and I get a little twitchy around any holiday as we anticipate the copious amounts of barf, the machine gun like barking coughs, and screechy all nighters (sometimes the screeching is actually the R.A. during these bouts of sickness but mostly it's my husband and I finally cracking under the strain.)

It was a nasty respiratory virus.  We hadn't seen the R.A. that sick since he was a baby and hospitalized with  RSV or was it the time he was hospitalized with the Rota Virus?  Or was it when he had baby bronchitis (which when you are a baby technically it's not bronchitis because your respiratory system is not fully developed but leave it to the R.A. to get it anyway)?  Where was I?  I guess that's not important.  But it does go to show how sick the R.A. was.  So although he was really, really ill my husband and I were relieved that we had dodged the traditional holiday bullet.

By the Monday of Holy Week we realized that we did not dodge the holiday bullet after all.  We stupidly underestimated how diabolical the R.A. was.  He wasn't going to allow us a holiday free pass.  He had merely changed up his game.  In a brilliant reverse move, on the Easter holiday we were all sick and the R.A. was the healthy one.  It was pure genius. If he had initiated the Invasion that day, I would have been the first to volunteer to be vaporized.  It would probably be the only way to clear my sinuses.

Well played, R.A.  You are the superior creature.