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."

Monday, November 25, 2013

Like a Norse Saga


"Shocking!"
"Horrifying!"
"Terrifying!"
"The most petrifying spectacle you will see all year!"
"You'll never sleep again because you'll be too frightened to close your eyes!"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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