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."

Sunday, November 25, 2012

Here We Go Again (Yet Again)

As those who regularly read this blog know, the R.A. has his share of quirks/obsessive compulsive tendencies - coloring every square inch of a sheet of paper (both sides), lining up Thomas trains, a preference for McDonald's french fries, his eating habits in general.  He also has other compulsions that tend to be cyclical, randomly appearing and disappearing - for example taking every puzzle piece out of its frame and lining the pieces up on the floor or arranging Dum Dum's in distinct patterns on the floor. He will engage in certain behaviors or activities for weeks or even months.  Then abruptly, with seemingly no (earth) reason, will stop an activity.  But then, just as mysteriously, months later the R.A. will take it up again.  My theory is that these activities have to do with planning the imminent invasion of earth.

Currently the R.A. is back to his puzzle piece obsession.  There are four wooden puzzles involved - a number puzzle, an alphabet puzzle, a teddy bear puzzle, and a train puzzle.  All the pieces from all of these particular puzzles are involved.  It's never some of the train and all of the ABC or just all the number puzzle.  It's all or nothing and it's never nothing.  A new twist is that the pieces of the number puzzle must be removed at the bottom of the stairs and only in that location.  If we try to grab him as trots by us with the puzzle he will nimbly dodge us while yowling in frustration - "Don't you get it?  I can only set this model up in that area or the experiment won't work! I can't set it up in the middle of the living room as that will incorrectly increase the number of variations.  Oh my Kitchen God, these earthlings are so stupid!  It's a wonder they haven't annihilated themselves in bizarre washing machine accidents."

Once the pieces are removed and arranged he never touches them again.  We must step around the pieces, over the pieces, and sometimes (and painfully) on the pieces.  The R.A. tiptoes or toe jumps gracefully between the pieces, occasionally pausing to finger flick and yowl at random pieces. Perhaps he is reading patterns or working on some sort of brilliant alien equations - "Okay, so if there are roughly 7,054,543,253 people occupying this Kitchen God forsaken planet, and if my calculations are correct, we will need 17.6 zfbiks to vaporize half of them.  Give or take half a pzv."

When we ascertain that enough time has passed that we may request the R.A. pick up the pieces without him unleashing too much viciousness, we tell him it's time to clean up and to really bring the point home, we start to sing the clean up song.  He shrieks in indignation (either at having to break down his work or at our singing or a combination of both), chins himself and then usually the offending parent and thus begins the deconstruction of his models.  Every endeavor with the R.A. must also involve his unique imprimatur and puzzle clean up is included.  The R.A. doesn't just pop the pieces back into their designated spots in their frames.  Each piece is picked up, placed in its spot and then, with his right index finger, the piece is rubbed three times.  He does this for each piece he touches.  The rubbing procedure ensures clean up time takes at least double the time so we have to make sure we have allotted enough time in our own schedules for the enterprise.  Remember - nothing is ever simple with this kid.  That's probably part of his overall plan.

Another bit of R.A. whimsy involves his clothes or rather lack of clothes.  Back when the R.A. was about two years old he started removing his clothes during nap time and during the night.  Upon entering his room we would discover the R.A. in his natural state.  Taking the idea of "Nature Boy" to the extreme he would also wee and/or poo all over his room and all items in it (bed and toys.)  The R.A.  would greet us one of two ways -  crowing happily and jumping up and down in delight (often in a puddle of his own waste) or standing tip toe on his window sill growling, "Tuck! Tuck!" meaning "Stuck! Stuck!"  Although the R.A. could very agilely pull himself up onto the sill he could not figure out how to get down and would thus strand himself on the sill.  When this occurred he never called out for help instead waiting until the grown up finally appeared and then, irritated, demanded that the stupid adult pull him down.  Luckily the R.A. only has two windows in his room and even more fortunately one faces our street and the other is directly over our neighbor's driveway and faces right into their dining room.  Yes, they did have many memorable Sunday dinners as they often reported to me.  

Many issues were created by this "au natural" quirk.  My husband and I were very worried about the R.A.'s penchant to hang out on window sills.  Although we were distressed by the idea of the R.A. falling out the window, having been well acquainted with the R.A. and his talent for naughty, we were more concerned about him climbing out the window and on to the roof.  Because let's face it, there was a better chance of a naked roof stroll than a fall.  After much thought and consulting experts (carpenters, the fire department, circus performers) we decided to Plexiglas over the windows and sills, thereby preventing the R.A. sill access.

We only Plexiglassed windows in the R.A.'s room figuring when he got stranded on sills in other rooms in the house there would be an adult immediately on the scene.  Theoretically the adult would be so attentive that the R.A. wouldn't even get a chance to climb up on the sill...  Okay, sometimes we aren't always and literally on top of the R.A.  Don't forget that he is crafty in a super villain sort of way.  Listen, don't judge us!  The dishwasher is not going to unload itself! Despite living with said super villain we still have a home to run.

Despite taking care of the sill situation we still had the problem of the R.A. using his room as his own personal chamber pot.  My husband and I briefly discussed duct taping the diaper onto the R.A. but were dissuaded by the fact that the R.A. has sensitive skin.  Coincidentally at about this time my husband caught a documentary on television about a family that had six children on the autism spectrum.  Some of these children also removed pajamas during the night.  Their clever parents devised an ingenious solution, even more ingenious as it didn't involve anything expensive or complicated.  They purchased one piece, zippered, footie pajamas and cut the feet off them.  The pajamas were put on the children backward so that the children couldn't reach the zippers and therefore could not undress.  Genius!  Why those people were not nominated for a Nobel prize in science I will never know.  

Why I bring the "au natural" idiosyncrasy up is that it has reared its ugly head or rather bottom again.  Yesterday morning my husband discovered the R.A. in his room in all his "glories" and with various "presents" left all over the room.  As the R.A. had not engaged in naked time for well over a year, we had forgotten about it.  He has worn "regular" two piece PJ's to bed loads of times and has been put into his room for naps in his clothes without any incidents.  But that's part of the R.A.'s M.O.  He always lulls us into a false sense of security and then BAM! He's all about keeping us in a constant state of "What the hell happened?"  Between lack of sleep and messing with our heads the R.A. always has the upper hand.  So we're pretty much always where he wants us:

Confused, exhausted, frazzled, and a little frightened.

Frankly, I'm ready for the vaporization.

Sunday, November 18, 2012

I Love a Parade...Sort Of

Yesterday we attended our town's annual Santa Parade.  As we did last year, we ate lunch at a restaurant on the route.  Other people had a similar idea and the place was packed, much to the R.A.'s dismay.  We also had a waitress who was unfamiliar with our routine, meaning the minute we entered the door an order for french fries should have been put in.  It was not and the waiting caused the R.A. significant anxiety illustrated by his constant observation of the pick up window, yowling, and energetic hand stimming.  The stimming was so vigorous I was afraid he was going to sprain his wrists.  To add insult to injury, my daughter and I both received our food before the R.A.  At this breach of protocol the R.A. caterwauled in fury: "Listen Lady, I don't know if you're new here but I'm sort of a big deal.  This is unacceptable.  I demand to speak with your superior officer!"  My husband and I were somewhat nervous that we would be in for a "Vomit of Retribution."  Finally the R.A.'s fries arrived and he settled down, his silence only interrupted by his barking for more fries.  There was one brief moment where we did fear a vomit eruption but it was averted by my scraping off the offending chewed up blob of fries from the R.A.'s tongue and then wiping his tongue with a napkin.  Fortunately he deemed his tongue and mouth reasonably cleansed from the repellent morsel and continued eating and we enjoyed the rest of meal in relative peace, well, for us.

The only slight ripple was when it was time to leave.  As the R.A. was still noshing on his fries, he was loath to leave and while we were wrangling him into his coat did attempt to lunge across the table to snatch more fries.  Twice.

As we left the restaurant, the R.A., still annoyed by our premature departure, yowled and chinned his father's hand.  I think it also included some preemptive caterwauling along the lines of, "Now what in the Kitchen God's name are you making me do now?"

The R.A. quickly discovered it was to stand on a nearby sidewalk.  He looked around at our fellow sidewalk loafers, his expression reading, "And we are doing this because...?"  A few times he stepped off the curb and looked up and down the deserted street.  He would then look around him as if to say, "I still don't get it." 

The R.A. had also decided that we were more than the usual embarrassment to him and he diligently worked to look as if he were not with us.  No matter how many times we requested he come and stand with us, he resisted.  Sometimes he would stand near us but then, slyly, shuffle a few more steps further away.

The parade had not yet begun but the toy vendors were trotting their carts up and down the street.  These the R.A. found quite interesting, especially when he noticed multiple "Sticks of Infamy" (SOI)* hanging off them.  The first time he recognized this he actually did a double take: "There are multiple SOI's?"  A few times the R.A. also tried to run after a cart.

His sister purchased a small red dog attached to a SOI.   Initially the R.A. was too busy chasing the carts to notice.  Eventually he did, illustrating this by jumping, flapping and caterwauling.  His sister, quickly catching on to what that meant warned him, "Don't even think about it."  The look he shot her said, "We'll see."

As we were on the sidewalk, the traditional thoroughfare for pedestrians, people did walk by.  This was a great affront to the R.A. and as people passed he would jump up and down indignantly and stim his fingers at them.  To the casual observer it looked like he was putting a hex on them.  Perhaps he was...

At this point the R.A. had become intrigued with a nearby family.  Initially we thought it wasn't so much that he was interested in the family as it was in an abandoned SOI that one of their children had carelessly tossed next to an unoccupied lawn chair.  The R.A. cased the scene.  Slowly and cagily, he would edge toward their "parade base" and then, confident that no one was looking, would charge toward the SOI only to be thwarted by me, my husband, or his sister.  Yowling in indignation, the R.A. would stomp back to our general direction, wait about 28 seconds and then renew his assault.  This went on a few more times until finally the R.A. admitted defeat.

He then turned his attention to a small grassy area that was behind us.  Children were running and twirling streamers.  The R.A. observed them wearing an expression that I'm sure Jane Goodall wore when she was out in the mist observing gorillas.  After a bit he ran into the middle of all the activity and began spinning and caterwauling.  The other children immediately dispersed.

Due to his numerous attempts to chase down vendor carts, steal an SOI, and spinning, the R.A. had worked up quite an appetite.  He stumbled back over to us and demanded juice and chips.  He ate a chip and sipped some juice and then carefully placed them on the sidewalk next to our backpack.  The R.A. then ran back to the grassy area for the start of the parade.  He would skitter back to us to nibble a chip and sip some juice and then scamper back to the grassy area, reminding me of a yowling squirrel. 

The R.A. then became enamoured of the SOI family, even going so far as attempting to join their group, obviously attracted by their fancy lawn chairs and assortment of SOI's.  He did try a few times to jump onto their lawn chairs,some of which were unoccupied.  The R.A. showed his unhappiness at being denied access to a new family by tearing his hat off his head and throwing it to the ground while viciously yowling.  For some reason this alarmed the R.A.'s potential new family.

Foiled in his attempt to be adopted by another family, the R.A. next turned his attention to a nearby row of trees.  He spent some time trying to climb them despite the fact that none had any low branches.  The R.A. eventually discontinued this enterprise and thus engaged in tree to tree to tree to tree wind sprints, pausing to boogie whenever a band marched by.  By boogie I mean rocking side to side while caterwauling.

While frolicking amidst the trees, the R.A. unwittingly acquired a playmate - an unwanted playmate.  Much to the R.A.'s horror a toddler was quite keen on wooing him to be her newest chum.  She tried to befriend him by offering him long twigs.  He vigorously rebuffed her gifts by turning his back toward her and even running to the other trees with her in hot pursuit.  Undeterred she persisted.  Eventually she concluded the R.A. was not a twig man and switched to pine cones.  These too were met with rejection and an expression that was a cocktail of panic, disdain, and exasperation - all made by energetically not making eye contact.  The R.A. finally accepted her offering of a leaf, probably just to get her off his back.  The minute the leaf touched his hand he batted it to the ground.  The toddler then tried to impress the R.A. by rubbing dirt on one of the trees.  He looked at her as if to say, "Really?  That's all you've got?  How lame."  The R.A. then stomped off to angrily demand gummies from his father and then irritably chomped on them.  The toddler, finally getting the message that the R.A. did not want to make friends, did not follow.

When we returned from the parade the R.A. made a half hearted attempt to steal his sister's new SOI.  He then shut himself in his room, obviously needing time to decompress after such a hellish afternoon.  The R.A. caterwauled for a bit and then fell asleep, drained by the Santa parade -  as most of us are.

Happy Howlidays!

*I have to mention that the original SOI was finally retired, covertly, earlier this year.  After withstanding many many rigorous and furious brandishings, it was quite tattered.  We had a small yet tasteful send off to the trash while the R.A. was at school.


Sunday, November 4, 2012

Trick or Trick II


Halloween is a big deal in our house - for my daughter.  This is because when it comes to junk food, my daughter is very sheltered.  She was almost 3 years old when she had her first peanut butter cup.  I'll never forget it.  After eating it, my daughter came tearing into the kitchen, hollering, "Mommy, that chocolate had peanut butter in the middle of it!"  It's like she's Amish when it comes to candy.  That was also the year she finally understood what trick or treating was all about and attempted to go trick or treating for most of the month of November, becoming quite upset when we wouldn't let her.  Once she was so desperate she actually managed to get herself into her costume.  Granted, it was backward and upside down but it was still on.  She was so relentless in her demands to trick or treat that one night my mother and I, in desperation, allowed her to "faux" trick or treat.  My mother went into her room and I went into the bathroom.  My daughter, clutching her trick or trick pumpkin, would knock on each of those doors.  We would "answer" and put candy in the pumpkin. It was actually "recycled" candy as it was taken from her pumpkin but since she was so young it didn't register with her and she was just pleased to get the candy.

Let me explain that I am not one of those "we only eat all natural and healthy although crap tasting food" mothers.  I am careful about the sweets because my daughter comes from a short, round, and metabolically slow people and her idea of exercise is a good brisk sit.  This means that she already  has a propensity toward chubby.  One time my husband returned from taking her to a doctor's appointment and announced that based on her height and weight, our daughter is a perfect square.  That is why junk food is extremely limited in our house.  The minute the calendar changes to September my daughter starts counting down to October 31st.  She enjoys the costume aspect but it's really all about the forbidden fruit or rather forbidden candy.

I am quite parsimonious when it comes to doling out her Halloween candy, limiting how much she can eat at a time.  She will attempt to negotiate, "The container of Nerds is small so how about one box of Nerds plus a Milky Way?"  I, like George W. Bush, however, refuse to negotiate with terrorists.  The big rule is that all candy left in her pumpkin by the Monday after Thanksgiving is given to her father to take into work.  Two weeks prior, my daughter starts to become slightly unhinged. She will periodically take inventory of the contents, "Two Star Bursts, three Nestle Crunch, one Swedish Fish.  Sacrifice the fish, save the Hershey bar - unless it has almonds."  She will circle the pumpkin and mumble to herself, "Three Kit Kats left.  Need to eat those before...the Last Day."  By Thanksgiving weekend I wouldn't be surprised to see her caressing the pumpkin and crooning, "Precious, my Precious."

This year, due to Super Storm Sandy, trick or treating in our town was postponed to the Saturday after Halloween.  Understandably,  my daughter was quite distraught at the news - picture a drug addict discovering there are no more illegal substances available within a 3500 mile radius.  She actually sputtered, "They can't do that to me!  I've been waiting for  an entire year!"  Only the promise of two pieces of candy from our Halloween stash for dessert on Halloween night managed to get her off that ledge.  "I guess that is sort of like two extra unanticipated pieces of candy," she sniffed, magnanimously.

When Saturday finally arrived, my daughter was up at 6 AM, eager to make sure she didn't sleep through trick or treating.  We began the day with an animated discussion of why she could not have a peanut butter cup for breakfast.  "But it's our Postponed-Actual-Halloween!" she argued.

It was a loooonnnggg day, working our way toward the magic hour of trick or treating and not just because we started our day so dang early.  Any occasion for food (lunch, snacks) was pre-empted by heated exchanges involving inclusion of candy because it was "our Postponed-Actual-Halloween."

Finally it was time to don costumes and head out.  One of my friends came over to accompany us out trick or treating.  She even dressed in a witch's costume.  Not only was I impressed by her enthusiasm but amazed that she would willingly want to come to our house for any reason.  I tend to try to leave my house for any reason. 

My daughter was so excited she was practically vibrating.  As with any special occasion, the R.A. looked bewildered yet irritated.  Originally, the R.A. was supposed to be a pirate but unfortunately his pirate hat was lost in the "Great Vomit Escapade of the Unscary Movie" event at his sister's school. By lost I mean that he threw up all over it and I didn't feel like schlepping it and a vomit covered R.A. through the parking lot so I tossed it in the school trash.  Therefore my husband dragged out last year's Thomas the Tank Engine costume.  Bemused, the R.A. permitted us to drape it over him.  When I walked him to the front door, he balked.  "Outside?  You're making me go outside -into the wild?  But it's cold and there's no black Sharpie markers out there.  There's also fresh air and you know it makes me sick."  As I walked down the front steps with him, he did try and run back into the house a couple of times.  Of course my husband decided now would be the perfect time to get some photos of the children in their costumes.  During the photo shoot I had the happy task of wrangling with the R.A.  Any time I let go of his hand he would bolt and attempt to escape into the house while hollering, "No, please!  House, please!" It was sort of like a reverse prison break.

Off my friend and I went with the children to trick or treat, the R.A. bitching the entire time.   It wasn't screaming or shrieking.  It was sort of like a whiny yowl or a yowling whine. "Yowl, yowl, whine, yowl, whine, whine, bitch, yowl, whine, bitch, bitch, chin, chin, caterwaul."  Loosely translated: "This is so stupid!  I can't believe you are dragging me outside in practically subzero temperatures in this ridiculous get up!  I believe this is a clear violation of the Geneva Convention!  As the Kitchen God is my witness you will be among the first vaporized when the invasion comes.  And believe you me, it's coming!"  Gamely, we soldiered on, me half dragging the R.A.  I don't think the kid paused for breath.  He consistently maintained the yowling whine the entire time.  We would walk/drag up someone's driveway, up their stairs, ring the bell, receive the candy, stumble back down the stairs, walk/drag down the driveway, and head back on the road - all accompanied by the R.A.'s Halloween soundtrack of  "Yowl, yowl, whine, yowl, whine, whine, bitch, yowl, whine, bitch, bitch, chin, chin, caterwaul."   For the neighbors that knew us I just yelled "thank you" over the yowling and shrugged as if to say, "Well, you know the R.A."  For those neighbors that didn't know us (and often stood frozen in their doorways, clasping their bowls of candy in shock) I hollered, "He has autism.  I think he's having a bit of a hard time with the whole trick or treating thing," and then I smiled sheepishly as if to say, "Kids do the darnedest things, huh?"  I did not get any smiles back.

The R.A. was so infuriated with the whole exercise that when we would get to the neighbor's door, I would have to lift his arm that was grasping his Thomas Halloween bucket so that the person could put the candy in.  Often this was an awkward moment as the R.A. would energetically resist me and the neighbor would stand there with her hand suspended in midair, not sure what to do as not only had she never seen a child so resistant to candy but never seen a parent force a child to accept it.  During one such instance I stammered, "Take it.  It's not like she's trying to kill you or something."  I guess the only word to describe my neighbor's expression is horrified.

Some neighbors would offer the bowl of candy for children to make their own selections.  On these occasions the R.A. would charge at the person, caterwauling loudly, chinning his free hand.  He would then take a candy and put it in his sister's bucket.  I believe what he was saying was, "Fine!  I will take your poison, but only because I am being forced to.  However, I will make her take it!  So there, substandard, inferior earth creature!  I will always have the upper hand as I am the superior specimen!" I don't think there is word in the English language to adequately describe the neighbor's alarm.

About three quarters of our way through trick or treating I decided not to subject the R.A. (or myself or the neighbors) to trick or treating, sending my daughter up to the door while the R.A. and I  waited at the bottom of the driveway.    His sister, upon getting a candy would ask for one for her little brother, gesturing toward her brother who was pacing back and forth while muttering viciously and waving his hands around a la Mussolini.  I think people gave candy primarily out of fear.

Obviously we were a big hit in the neighborhood.

Shortly after making this decision, my friend scored a Dum Dum for the R.A.  It did seem to calm him a bit but not quiet him.  He still engaged in his whining yowls with the lollipop tucked to the side of his mouth.  But some of his vexation was tempered.  Thank the Kitchen God for Dum Dums!  Perhaps they are the home planet's equivalent of Xanax.

When we finally finished trick or treating and started to head into our driveway, the R.A. pulled free from my grasp, caterwauled joyfully and ran into the house.  Honestly, I think I wanted to do the same.  I don't know which one of us was more relieved that the ordeal was over. 

Me.  Definitely me.