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."

Thursday, June 27, 2013

Another Quiet Night At Home

To: R.A.'s Dad (luckybastardrelaxing@work.org)
From: R.A.'s Mom (whatinhelldididoinapastlifetodeservethis@tearingmyhairout.com)
Date: June 27, 2013. 6:45 PM

Sorry your knee is so painful.  It sounds like they drained a lot of fluid from it.  It's probably best that you went into work as you have a better time resting there than here.  The R.A. is not only on 11 but it's like he's on 11 AND on steroids that one would only give to a big game animal.  Tonight while I was making your daughter her dinner he somehow found a black marker (thankfully NOT a Sharpie.)  He then proceeded to climb not only on top of my bureau but on top of my tiered jewelry box and then scribbled all over one side of the indoor shutter, the adjacent wall and the mirror on the bureau.  It was pretty amazing that he managed to cram in so much climbing and so much scribbling in such a short span of time - no doubt due to those steroids.  After loudly declaring my surprise at finding such a prolific amount of spontaneous art, the R.A. and I engaged in some Greco Roman Baby Wrestling as I attempted to pull him down from the jewelry box.  That was actually Round One of the match.  Round Two occurred when we wrangled over the marker.  I finally managed to wrest it away from him and threw it out.  Round Three was more of a combination of wrestling and water polo as that happened when we washed our hands.  By this point the R.A.'s initial indignation at being denied the right to artistically express himself had now graduated on to self righteous rage.  Once his hands were cleaned, he flounced out of the bathroom and into our room.  He then threw himself on our bed a la Bette Davis.  This rare moment of petulance was the least active moment he'd had all night so I took advantage of the relative calm and cleaned the mirror after which we glared at each other for several moments.  I then put on the "Mickey Mouse Club House" for him while he sulked on the bed.  We exchanged a few more glares.  I then removed myself to his room to tidy it up as he had engaged in his customary after school activity of using his bed and toys to re-enact the Vandals sacking Rome.  Less than five minutes later I returned to our room to discover that the R.A. had retrieved the marker from the trash (which meant he had to dig down deep because I buried that sucker) and was once again at it, this time seeming to pay particular attention to the mirror.   He took one look at me, tossed the marker and pitched a bloody fit  at again being interrupted.  I responded by pitching my own fit.  We roared at each other for a bit and then embarked on Round Four of our version of Greco Roman Baby Wrestling.  This time he took the offensive and actually lunged off of the bureau at me.  Fortunately our fall was cushioned by the bed.  The R.A. took advantage of my being momentarily stunned to chin the dickens out of both of my hands as well as my shoulder all the while caterwauling for Britain. I think his alien curses are still orbiting the earth.  I admit that by this point I was exhausted and opted not to wrangle him into the bathroom for a wash up. Instead I elected to use your pillow case to wipe him down.  I know you don't mind and if you do won't dare mention it. Currently the R.A. is laying on our bed watching TV while shooting me sporadic dirty looks.  That's ok because I am shooting them right back.  Apparently all the wrestling and scribbling has tuckered him out as the glowering is sporadically interrupted by huge yawns.

I forgot to mention that the vacation days I was supposed to take next week have been revoked.  Not only that but I have to work all weekend as well as the holiday.  I also have to stay at work over night pretty much the entire week.  Bummer.  And isn't the R.A. on school vacation next week?  Too bad.

Monday, June 10, 2013

The Sport of Kings (and Warrior Despots)


Saturday night we embarked on yet another of our fun filled family adventures.  We started the night off by hitting Mass which the R.A. now very much appears to enjoy.  Those sitting around us not so much.  For my family I think it's highly recommended for us to begin any outing with lots of prayers -  particularly since whenever we go any place we look like we're fleeing the "Rape of Nanking" - lots of yelling, bloodshed, and chaos - and that's usually just us trying to get from the house to the car.

The sermon was about compassion so if we were loud or distracting - suck it to our pew neighbors - Father said you have to be compassionate so there.  The R.A. must have been feeling especially pious because after Communion he did bark out, "Quiet!" a couple of times.  I think all of our praying was impinging on his chip eating which he did with lots of gusto, polishing off a record 3 snack containers of Pringles, 2 juice boxes, and one package of Snoopy gummies.  Since we didn't let the R.A. snatch a Communion wafer from the Eucharistic minister he probably felt he had to fill up on his own snacks.

After Mass we headed out to bowl a few strings.  The R.A. appreciates a good game of the old candle pins.   Happily for my husband, Glo Bowl freaks the R.A. out so we just go for the boring fluorescent lighting lanes.  Happily for my husband because non Glo Bowl is cheaper than Glo Bowl.  I must confess that even though I am not autistic (at least not officially diagnosed but some days I feel I am being pulled into that vortex) Glo Bowl freaks me out.  The alley is dark except for pulsating sections of neon lights over the pins.  If it weren't for the throbbing dance music it would be a good simulator for what having cataracts is like.  What's next? Glo' Archery?  "No, you can't really see the target but this Rhianna/Usher mix is dance-tastic!"

The first time we took the R.A. bowling we had to do a lot of verbal and hand over hand prompting basically about every single aspect of bowling from collecting a bowling ball, to rolling it, to sitting down when it is not one's turn.  And sitting down in your own seat not the seats of an adjacent family.  As he allowed himself to be dragged around the lane he had this expression that said, "Come on.  Really?  Seriously?  This is what you people call recreation?  It's a wonder you haven't been conquered and vaporized sooner."

Now the R.A. is an old hand at bowling.  He can recognize the route when we head out in the car.   The R.A. starts rocking back and forth, hand flapping, and yowling in anticipation:  "Tonight I'm breaking 30.  I can feel it!"

Oddly enough, despite being a great warrior and possessing freakish strength (especially in his toes) the R.A. is not much of your typical earth athlete.  At school and at home we are still working on throwing a ball. His catching also needs a lot of work as the R.A. runs from a lobbed ball as if it is a Molotov Cocktail.  Maybe that's what they use on the home planet for a rigorous game of catch.

The R.A. is the type of guy that once he learns how to do something one way, that is pretty much the only way he will do it.  I know this will come as a surprise but he's not really somebody that's all about flexibility (unless it involves contorting his body to fit inside the bathroom closet.)  Hard to believe yet true.  So this means that when given a ball, even a bowling ball, the R.A. will only toss it, two handed overhand.  When he bowls it makes him look as if he is doing some awkward two handed shot put lob.  These lobbed bowling balls also make really loud booms when they hit the hard wood.  I'm sure if we looked very closely at the floor there are little dings.  Despite being thrust with all the power his 41.5 lb. frame can muster, not much rolling power is generated.  The ball snails down the lane with such slowness that during a roll a person could go to the bathroom, grab a soda from the vending machine, return, and the ball would maybe be halfway down the lane.  The ball will often skirt around pins, not knocking any down or will stop and rest next to a pin, also not knocking it down.  Therefore, in the interest of time and the hardwood floor, the R.A. and I "team bowl."  I stand behind the R.A. and together we count, "One, two, three (sometimes skipping two) go" and release the ball underhand.  The ball to floor contact is not as loud and the ball rolls much faster down the lane.  With this new system the R.A.'s game has improved to a 68 average.  Relatedly my back soreness has increased to an average of 300%.

We now have a pretty good system down and can direct the R.A. primarily with verbal prompts.  Of course there were a couple of dicey moments.  One time he insisted on sitting at a different table.  Verbal direction did not work and he pretended not only not to hear us but that he did not know us.  (This is not new as there have been many times both of my children will attempt to sit with other people and look at their parents with expressions that say, "I have never seen those two in my life.") An impromptu match of Greco-Baby Alien wrestling ensued between the R.A and his father.  Fortunately this was one of the rare occasions where the other booth was unoccupied.  Actually it was more like several mini matches as the R.A. made multiple attempts to bolt over to the other booth.  Finally we made the R.A. sit right next to my husband who was also serving as the score keeper.  The R.A. would sit, his expression one of nonchalance, meanwhile his left foot would be wiggling gently as if biding its time to hit the floor and make a break for it which did happen a couple of times.  Because my husband was keeping score I would intercept the R.A. and mumbling alien curses he would plop himself back in the chair.

Although we now have mastered a successful bowling technique, we are still working on a huge challenge.  The R.A. is more interested in the bowling ball return than in actually bowling.  A few times we would be in mid countdown, on the cusp of rolling the ball, and he would jerk away to study the returning ball.  Because of our bowling form, he is tucked into me and this sudden movement causes his head to slam into my throat.  In addition I struggle not to drop our bowling ball on either of our feet.  The R.A. then breaks away to follow the ball's route to the ball return, flapping and crowing in delight.  I think he was also yowling, "This, inferior creatures, this is the real entertainment."

The R.A. "made a present" during the first game so I had to take him to the restroom to change him.  He has recently developed an abhorrence to changing tables.  When I tried to lift him onto the one in the alley restroom the R.A. kept darting away from me, while screaming "No, please! No, please!"   Afraid someone would call DSS on me, I eventually relented and took him into one of the cramped stalls to change him.  This also did not meet with his approval and he attempted to wedge himself behind the toilet.  Every time I tried to grab him my movement set off the automatic toilet and its flushing caused the R.A. to rock and caterwaul.  Do you ever hear of those situations where a mom lifts a car off of her toddler?  In the midst of a horrific moment she can summon superhuman strength.  Well, my situation was not as dramatic as that but I was no less panicked.  What if the R.A. refused to come out from behind the toilet?  Even though my husband was strong enough to lift the R.A. he would not be able to move himself close enough to grab the R.A.  So I had one of those super human strength moments and scooped the R.A. from behind the toilet.  Then, with him held in a half leg lock, managed to clean him and change his diaper.  I did have the temerity to wash my hands after the operation which enraged the R.A.  He punished me by flouncing out of the restroom and walked very quickly ahead of me as if we were not together.  The R.A. also attempted to veer out the open alley doorway.  But we did eventually make it back to our lane.  No doubt much to the dismay of other bowlers.

During our second game a family arrived to occupy the booth next to us.  They had a little boy about four years old that the R.A. was sometimes interested in.  I think it surprises him to see other people his size.  A few times the R.A. had a difficult time focusing on his game because he was studying the other little boy.  I believe he was also miffed that this family was now commandeering what he felt was his spare booth.  Now that I think back perhaps the R.A. was caterwauling to the family, "It's like that?  You just gonna plop your fannies down in my bowling crib?  Don't you know who I am?  I could have you vaporizes like that!"  I am often relieved that nobody speaks his language.

A young mom and her very young preschooler came about halfway through our last game.  It was the little boy's first time bowling and I don't think his mother was the sharpest tack as I heard her using the R.A. as a bowling model.  They really struggled and sometimes, despite the bumpers, their bowling balls ended up in our lane.  The little boy insisted on retrieving the ball even if it meant walking in front of the R.A. and myself in our bowling lane while we were in mid-roll.  The mom spent a lot of time calling, "(Child's Name, Child's Name ) come here."  "(Child's Name, Child's Name) don't walk in their lane while they are bowling."  "(Child's Name, Child's Name) leave their balls alone."  At one point I wanted to bark, "For Kitchen God's sake!  This verbal prompting isn't working!  Hand over hand his fanny back to your section! Come and get him!"  This girl was young enough that I could have been her mom.  If I could haul my fat arse around the alley to direct and sometimes grab the R.A. she certainly had enough energy to coral her kid.  I had half a mind to whisper in the R.A.'s ear that she had a stash of Pringles in her purse. 

Sometimes the R.A. has such a wonderful time that it's difficult getting him to leave.  He will yowl in rage and refuse to let us take off his bowling shoes, flailing his legs as we attempt to grab his feet.  Luckily, due to waking up early, combining with a rigorous bowling experience, the R.A. was spent.  He threw a few half hearted yowls at the nearby families and allowed us to lead him out the door: "Peace out, inferior earth creatures.  We outta here!"