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."

Saturday, May 12, 2012

Happy Mother's Day - You Filthy Animal!


It is often said that the best gifts are homemade.  Of course it's often said by people who are too cheap to buy a decent gift.  Anyway, the R.A. himself must subscribe to this adage as this year his gift for Mother's Day is a double case of Pink Eye.  And although the Pink Eye itself is a nifty "something you'd never get for yourself" present, the real gift is the dispensing of the eye drops - thrice daily.  This means that the gift of Pink Eye extends beyond Mother's Day and could go up to a week.  Take that, all you moms who only got flowers or Edible Arrangements.  Suckahs!

Mother's Day weekend kicked off early Friday morning with the R.A. emerging from his room looking like he had gone eight rounds with old school pugilist John L. Sullivan.  My husband and I surveyed the R.A. with an air of dejection.

"Crap," said my husband.
"It is Mother's Day weekend," I noted.
"True," said my husband.  "So we are due a holiday ruining illness."
"Eye drops," I shuddered.
"Crap," repeated my husband who knew he also now had the unfortunate duty of bringing the R.A. to the pediatrician.  He no doubt was looking forward to restraining an energetically livid R.A. while the doctor attempted an eye exam.

Although neither of us are physicians or play them on TV, our diagnosis was correct.  According to my husband, the doctor walked into the exam room, looked at the R.A. and declared, "Oh, yeah.  That's Pink Eye."

Even though we know the eye drops are coming, when the doctor says, "Eye drops.  Three times daily for seven days" we still have to fight the extremely strong urge not to weep and cry out, "Why, Lord?!  Have I not been a good faithful servant?!"

Unfortunately, I was at work so the R.A.'s dad had to tackle the first eye drop dose solo.  As you can imagine, the only task more difficult would be giving eye drops to a "roid" raging mountain lion who's also pissed because you inadvertently stepped on its tail.

Finally, after a particularly vicious match of Greco-Roman Baby Wrestling, the drops were inserted.  Sweating and out of breath, my husband released a furious R.A.  My mother, who had been watching the wrangling observed, "Three times a day?  Hmmmm."  But notice, she didn't volunteer to help.  Hmmmm.

Before leaving for work my husband managed to get another dose of eye drops into the R.A.  This meant I would only have to administer one dose that evening.  Obviously I spent most of the afternoon at work holding back my excitement.

All Friday night I was very careful to avoid the words "eye" and "eye drops" in an attempt not to antagonize the R.A.  He must have been feeling quite uncomfortable as he was very quiet and not his usual boisterous self i.e. racing around the house in a frenzy while yowling impossible demands.  The quiet was unnerving, the quiet before the storm.

Feeling I had delayed the inevitable as long as I could, I finally announced, "Night-Night time."  Further evidence that the R.A. was not feeling like his usual caterwauling self, he silently followed me up the stairs.

So as not to incite rage any sooner than necessary, I discreetly hid the eye drops in my pocket.  After changing the R.A. into his PJ's, I quickly whipped him onto his back.  At this point I saw that I had an added bonus - the other eye was starting to look funky.  Now I got to tackle both eyes.  Oh, happy, happy, joy, joy.  Knowing what was about to possibly transpire, the R.A. howled.  The match was on.

The R.A. is small and skinny.  But his appearance belies a freakish strength and an other worldly agility.  Combine those traits with his pale countenance and he is sort of like a toothless, vegetarian vampire.

There are multiple difficulties when administrating eye drops to the R.A. - the ever turning head (I swear it rotates all the way around), the flailing arms, the combative fists.  It's a recipe that ensures that the chances of getting the drops into the R.A.'s eyes are nil to negative nil.

After lots of tears (mine) I somehow squirted drops in his general eye area.  What you have to do is pretty much wait for and locate a clear shot at his face.  Luckily there are lots more occasions this week for me to hone my sharp shooting skills.

In retaliation for his abysmal treatment, the R.A. stayed up pretty much all night.  To make sure we were good and punished he also refused to stay in his room.

The screeching started shortly before midnight.  Recognizing I had a looonnggg night ahead of me, I fetched him from his room.  As the R.A. passed me he snarled at me.  I believe the snarl roughly translates as: "That's it, lady.  You just bought yourself a night of yowling, bouncing, and impossible demands.  Enjoy!"

Upon entering my room the R.A. promptly jumped onto my side of the bed and thoughtfully pressed his little face with its goopy, runny eyes right into the middle of my pillow.  After some spirited jostling, I was able to nudge the R.A. over toward his father's side of the bed.  Once settled the R.A. flung the remote at me, his gentle way of saying, "Mother, I'm in the mood for a bit of telly.  Won't you be a dear and find me a nice program?"  He then proceeded to roar his intense displeasure concerning my first couple of choices.  His direction was quite helpful considering I was still somewhat impaired due to being half asleep and my anxiety induced shaking.

Once a show was accepted, the R.A. tucked himself under the blankets.  He lay there, quietly for a bit and then leaned over to me and whispered, "I want chips."  Considering it was about 12:15 AM and not a generally sociably acceptable time for chips and fearing we could be initiating a new habit, I denied his request.  The R.A. did not take kindly to this, as demonstrated by his sitting bolt upright, caterwauling loudly and chinning the daylights out of his own hand.  But I stood firm or rather, since I was in bed, laid firm.  Shooting me a look of pure venom, the R.A. settled back down, every once in a while growling resentfully at me.

I then lightly dozed.  Note - lightly dozed.  Allowing oneself a real snooze runs the risk of waking up to find the R.A. teetering on top of a toy dog pet carrier which is teetering on top of a medicine ball which is teetering on top of a mini trampoline.  I only need that to happen four or five times to know that's a bad thing.

The R.A. himself also did not permit me to engage in any true REM's as every couple of minutes he would demand, "I want chips!"  I would then reject his behest and he would demonstrate his sentiments by yowling and vigorous chinning.  These are not exactly the optimum conditions for a peaceful night's sleep.

Around 2 AM, the R.A.'s dad came home from work.  The R.A. returned his father's greeting with "I want chips."  Again the request was denied and, well, you must know the routine by now.

My husband tried to climb into bed, on his side.  The R.A. initially denied him access so his dad was forced to cling to the side of the bed with his botto hanging off, also not optimum for sleeping.  But fortunately, none of us was in that bed for the purpose of sleeping.  The R.A. started back up with his chip demand.  Feeling so exhausted I was close to weeping I told my husband to get him the chips (at this point I did add a very colorful adjective in front of "chips.")  I can understand why sleep deprivation is a tactic used to break prisoners.

And so began a very rigorous couple of hours for "Manservant Daddy Guy."  Between 2 AM and 5 AM my husband made four trips downstairs for chips, gummies, and juice.   Sadly for him, his selections were not always up to the R.A.'s standards and further the R.A. found his father's tortoise like retrieval time galling.  Don't worry.  Daddy was soundly reprimanded.

In addition to his food demands, the R.A. was not pleased with the television selections.  After none of the programs on regular television or On Demand met the R.A.'s exacting standards, my husband resorted to showing a "Jakers" DVD on his lap top, the only R.A. sanctioned DVD we had in our room.  Regrettably the DVD didn't work and my husband had to go down to the living room to procure Thomas DVD's.  Upon returning to the bedroom the R..A. then began to review the selections. At this point, my husband, exhausted and frazzled, snatched the DVD's from his son and said, "Oh, no!  We're not doing this!" and popped an arbitrary Thomas DVD into the lap top.  The R.A. himself must have been feeling a little spent as he didn't argue about it.

Knowing the R.A. was in good hands, I cat napped while all the mayhem ensued.  I eventually woke up because my feet were achy.  It was then that I discovered the R.A. was curled up in a ball on top of my feet.  Did I nudge him off?  Heck no!  I was so thrilled that he was finally asleep that I went back to sleep, sucking up the uncomfortable sensation in my feet.  You'd be amazed the conditions my husband and I can now sleep under.

I woke up awhile later to find the R.A. had wedged himself in between his dad and me.  He then proceeded to cough a bit.  My husband and I jolted up, fearful of a boofing.  Not only was there no boofing but the R.A. did not wake up.  The coughing continued sporadically and as I was apprehensive about the prospect of vomit, I got up.  At this point it was 7 AM.  So I headed out for a bike ride.  It goes to show you how burned out I was by the night's proceedings.  I would rather ride a bike to another state (which I did) then to attempt to sleep in my own bed.  The bike ride was more restful.

On a happy note, I fully expect that tomorrow morning my husband and I will wake up looking like twin Rocky Marcianos, courtesy of our night with Mr. Pink.

Happy Mother's Day, you filthy animals!



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