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, September 30, 2011

He (Toe) Walks in Beauty

Well, the R.A. finally got the big break in his modeling career that he'd been waiting for.  He's going to be the cover boy for his school's newest brochure.  Frankly, I don't know if the R.A. got the coveted cover because of his fresh faced looks or because it was the only shot the school had of a student that didn't look confused or p.o.'d.  My husband, on the other hand, was positively thrilled.  The other morning he said to me, "Do you think they will have the new brochures ready for Sunday's autism walk?"  Seeing as they only took the photo roughly about 12 minutes ago I told him I didn't think so.  Honestly, the man is beside himself with excitement.  What does he think - that there will be modeling scouts from New York and Paris casing the autism walk for the "Next Big Thing?" 

I was amazed that they were able to get a decent photo of the R.A.  Most photos we have of the R.A. look like something out of "Ghost Hunters" as he's usually portrayed as a blur.  The few still shots of him are not that flattering as he looks angry yet confused.  We have this one photo of the R.A. that we refer to as the "What the FU#*?!" picture as that is clearly what his expression is saying.

I will say, and I say this completely objectively, in person the R.A. is remarkably adorable.  Although darker like my side of the family, no one ever says he looks like me.  Oddly, many people say the R.A. looks like my brother.  I know, creepy weird, right? 

I confess this sort of disappoints me.  The R.A.'s sister looks very much like her father. She was his "mini me" piping hot straight from the womb.  My husband has been stopped by people he doesn't know who say, "You're KiKi's dad."  In my case, when I would take my blond haired, blue eyed infant daughter places, people would coo over how beautiful she was and inevitably turn to me and say, "And this is....?"  My mother used to say they probably thought I was the nanny from Ecuador.  When my mother and I would be out with the baby I told my mother people probably thought we were the housekeeper and the nanny taking out the boss' kid. 

One day I just snapped.  My daughter and I were at Friendly's and right on cue, after fawning over the baby the waitress asked "The Question."  I responded that I was indeed the baby's mother and that I had adopted her from Sweden as everybody knows all the best babies come from Scandinavia.  As far as what was hot in international adoptions, Scandinavian babies were the new Chinese babies.  Unfortunately my snarky sarcasm was lost on the waitress who listened attentively to me.  She probably went home and knowingly told her family, "China's out.  Sweden's in."

Once my daughter started talking and publicly referring to me as her mother, "The Question" stopped being asked.  People now just assume she's adopted.  I am sure by the time she's a tween she'll be telling people that anyway.

Tuesday, September 20, 2011

The Big Five Oh

It's hard to believe but this is post # 50.  It seems like only yesterday the R.A. had done something (yet again) completely foreign, totally flummoxing me and I thought, "I will share this with the world. It's not enough that close friends and family know how excruciatingly stupid I am."  And so the Reluctant Astronaut's Mom's blog was born.  What an auspicious moment for personkind!  I also confess that I was getting really sick of those saccharine-y "My child has autism but is amazing and I wouldn't change it for the world because his autism has made me a better person and by the way I single-handedly care for him and I went back to school to become a BCBA* so I can continue his therapy at home after school hours and on weekends and I don't have any money challenges because of the autism and this blog is a testament not so much to my child's triumphs but to me crowing about my self sacrifice and how freaking fabulous I am" blogs. Blech!  Those parents are really autism's most serious casualty.

Those parents.  You know who those parents used to be?  Picture it - 10th grade.  Last period on a Friday afternoon in the beginning of June.  One minute before the bell rings.  Everyone but one kid is watching the painfully slow progression of the second hand on the classroom clock.  Everyone, but that one kid, is holding their collective breaths and willing that second hand to go faster.  Except for that one kid, whose hand has shot up into the air.  It's flailing wildly and its owner declares, "But insert teacher's name here you forgot to give us our homework!"  I was a complete dork in high school and even I wanted to beat up that kid.  That kid grew up to be one of  those obnoxiously over-achieving parents.  They're bad enough when they're only parenting "neural-typical" kids.  Add in a disability and those parents are brutal.  I wanted to stuff their heads in toilets in high school and I still do.

Frankly, I can't believe I've stuck with the blog thing this long.  That's a real miracle.  I thought by now I surely would have surrendered to exhaustion or my terminal laziness and abandoned the whole thing. It's probably because I'm never allowed access to the TV so it's one of those "what the heck else am I gonna do?" thingos.  I suppose I could do some cleaning in those down moments. insert loud guffaw here  It's too bad for the world that for once I am following through on things.

You're welcome, world.

*To put it in technical terms - one of those autism-y specialist type persons

And there was great rejoicing in the land! Or maybe not.

Apparently, Heinz ketchup is rolling out a new design for its packets.  For the R.A. this could go one of two ways -
Whoopie!  Yowzah!  Allelulia!  I love it! Love it! Love it!
or
What in H.E. Double Hockey Sticks is that supposed to be?  Take it away!  Take it away now!  It offends me greatly!  Now you will all pay!

For some reason I'm leaning toward the second response.  I don't know why....

Saturday, September 17, 2011

Walk Loudly

And still carry a big stick.

Lately we've taken to calling the R.A. "Teddy" as in Teddy Roosevelt because he's become very taken with walking around carrying a very large stick.  It's actually not a stick per se.  Originally it was a leash of sorts for one of my daughter's stuffed animals. (Being more stick-like than leash-like makes it easier to pretend the animal is walking on the leash.)

The stick had long been abandoned by my daughter when the R.A. stumbled  across it and quickly became enamoured of it.  I don't know if it plays into his General Patton aspirations but it's his latest "thing."  It's not unusual for people to become attached to things - a blanket, a stuffed animal, a misspelled grade 8 school basketball jersey, one's children (unless you're Ivan the Terrible - then all bets are off.)  It's not unusual for people on the spectrum to become attached to things that a neural-typical person might find odd - a train, a book, the number 8, or a red and white long and wobbly stick.  As a child, my attachment was to a stuffed animal that we determined to be a crocodile although it was shaped like a frog but had teeth.  None of us is really in any position to judge other's attachments.  (Don't look so superior.  You know you've got your own outlandish attachments.  I know of someone who collects Jello memorabilia.  What's that about?)

The R.A. likes to parade around the house clutching the stick, brandishing it with a flourish, like a very tiny Captain Blood.  Often he is caterwalling at the same time.  Either he's using the stick to emphasize a remark ("So when I say leave the yaw yee posh formation on the floor, I mean leave the yaw yee posh formation on the floor!") or threatening us ("Your day is coming, incompetant dunderheads!")  I can't tell.

Since the appearance of the stick, the family has had to make some adjustments.  We've learned to do a lot of bobbing and weaving to avoid being smacked by the stick.  Our reflexes are also improving as we've been doing a lot of stick blocking as it wobbles in our direction.  We've also gotten pretty good at leaping and lunging at the stick to keep it from making contact with our ceiling fan or anything breakable.  Of course we do all of this while simultaneously engaging in our daily activities such as eating, reading, talking on the phone, typing on the computer, watching television, bathing.  No, we don't take the stick away.  Honestly, it never occurred to any of us to do so.  We just accepted it as the R.A.'s newest "thing."

When a person has a disability, she adjusts to how she interacts with the world.  I know this because my mother has had serious vision problems her whole life.  She adjusts to the situation. (Well, as long as she can see the situation.  If not it usually means she has tripped and fallen over the situation.  But that's a whole "nother" blog - The Partially Blind Astronaut's Daughter.)  What's interesting about autism (or more like frustrating) is that the autistic person doesn't adjust to the world.  It's the rest of the world that has to adjust, especially the family.  My family is constantly in a state of adjustment.  It's now so organic that we make the adjustments without really thinking about it.  So when the R.A. appears during meal time brandishing the "Stick of Infamy" we just duck and chew.  For my family it's like we're trying to live a life despite the challenges of the autism.  Or at least get through dinner.

Friday, September 9, 2011

The Boob Toob

The R.A. has 5 television programs he enjoys:
1. Thomas the Tank Engine
2. Thomas the Tank Engine
3. Thomas the Tank Engine
4. The Backyardigans
5. Go Go Diego

Numbers 4 and 5 are DISTANT 4th and 5th place qualifiers.  I think he just throws them in to show that he's really a flexible, "roll with it" kind of guy, not bogged down by routine.  You know, like most people on the Autism spectrum.

As the R.A. is in constant motion, his television experience is also quite cardio-vascular.  The experience begins with him roughly thrusting or tossing the remote at you while demanding, "Thomash show.  Thomash show." (translation: Thomas show.  Thomas show.) or on those occasions when he's feeling daring and devil may care, "Backyahdibans.  Backyahdibans." (translation: Backyardigans.  Backyardigans.)  Unfortunately the R.A.'s never been a master of timing and his demand for his television program tends to coincide at inopportune times, like when you're making his sister's dinner or in the shower.  The R.A. does not want to hear any of your excuses like you're frying an egg or naked and soaking wet.  Just get it done, immediately if not sooner.

Once you finally get your act together and put the demanded show on, next commences a quick series of "suicides", to and fro in front of the television set.  Many times you're certain he's going to barrel into the TV but he always manages to stop fast, sometimes inches from the screen.  This may be his viewing experience's warm up.

Following the suicides are jumping jacks or rather the R.A.'s version - jumping up and down at a frantic pace while rapidly flapping his hands and yowling.  This is done directly in front of the television.

Then the R.A. becomes more reflective and ceases his frantic movements.  Now he stands less than an inch from the television and flicks at the screen with his fingers, "Plinck, plinck, plinck."  Occasionally he will cry out, maybe warning one of the characters of an upcoming catastrophe (usually involving the trains displeasing that Sir Topham Hatt - what a despot!  Those silly trains never learn they can never please that man.  They're always being set up for failure.  Just once I'd like to see an episode where Thomas snaps and runs over him - repeatedly, while screaming,  "Who's the useful engine now, old man?!!!")

Sometimes there can be variations, especially if he is watching his show while eating.  This afternoon, after the accepted television viewing procedure - suicides, jumping, flicking - he also spent some down time eating a banana (his third of the afternoon) while sitting in a chair and dangling his feet in his toy box.  I think he was also attempting to pick up some toys up with his toes.  Obviously.  I mean, what else does one do while eating a banana?

Although the R.A. would prefer only his television shows, he is magnanimous and will graciously allow us to occasionally view our own shows.  The other night the entire family, including the R.A., was in the living room watching television, a "non-R.A." program.  We'd been watching for a while when my mother remarked that the R.A. had us well trained.  It took a moment for me to figure out what she was talking about.  Even though it wasn't his television show, the R.A. was still adhering to his television viewing protocol.  This meant that 95% of the time he was in front of the TV, pretty much blocking it.  Instead of telling him to move, as a "normal" family would, we simply craned our necks and re-adjusted our own sitting positions in attempts to see around the R.A.  It had never occurred to us to move him.  Do you think after this realization we then moved him?

Are you mad?  That's not proper procedure.

Sunday, September 4, 2011

Table for One

The R.A.'s preferred way to dine does not typically involve sitting.  He likes to "graze" meaning he grabs a chip or cookie and walks around while he consumes it - usually on his tip toes (he has rock hard calves.)  Obviously sitting while eating is considered something for pansies on the home planet and therefore detested.  This also explains why the R.A. is so driven to provide a miserable dining experience for the rest of us "sitters."  He is determined to break us of this bad habit.

We, on the other hand, are intent on having the R.A. sit while he eats.  Or at least while he eats fruit as like any despot worth his salt he will just drop the no longer enjoyable fruit where he feels like it.  Unfortunately sometimes we don't stumble across the discarded fruit for several days. [insert gag here]  Did you know old bananas can appear to be petrified?  I won't provide any further descriptions of rotten fruit, taking into consideration those of you with delicate stomachs.  Just take my word for it.

As you can well imagine, this exercise in "earthling dining protocol" is borderline futile.  The R.A. considers earthlings in general to be inferior and has not an ounce of respect for our mores, including eating.  This is how it usually goes:

The R.A. appears, lugging an entire hand of bananas/bag of apples/bag of grapes.  His usual M.O. is to do this when you are occupied in an activity that involves both of your hands, high heat, and perfect timing.  Despite saying to him, several times, "One minute, buddy.  Mommy is busy.  Just a second.  I have both hands in the oven and am attempting to pull the baking sheet from a 450 degree oven." the R.A. continuously attempts to thrust the fruit into your body.  Sometimes he will become so disgusted he will toss it at you.  Luckily it only hurts when it's the apples.

Next, you pull the fruit out of the bag or off the bunch and hold it up and just out of his reach while saying, "If you want the ______ you must sit at the table."  You will say this several times as the R.A. is so excited by the prospect of the fruit he is jumping in circles around you.  When he finally calms down you maneuver him to the table.  He sits and receives the fruit.  You sit nearby as, despite the R.A.'s assertion that you are as dumb as you look, you are not and know that if you leave the room he will be up and roaming.  The R.A., again working on the above assertion, initially sits quietly and has a few nibbles of the fruit.  He doesn't acknowledge you.  The R.A. is attempting to lull you into a fall sense of security - "See what a good boy I am?  You can count on me to follow the rules.  Now, why don't you go clean the jacuzzi or something?"

But even though you are in the room, the R.A. just cannot sit and eat.  It goes too deeply against his alien grain.  He starts off slowly, standing on the chair.  You order him to sit.  He does.  You will do this several times.  Things will escalate to him standing on the floor and eventually to him taking a few steps.  All the while you will tell him to sit and he will for 22.3 seconds each time.  Finally you will threaten, "If you want the ______ you will sit.  If you don't sit, no _________."  Ultimately you will end up taking the fruit.  This will enrage the R.A. and may result in some chinning, sometimes you will be chinned in the process.

So that's how we get some nutritional items into the R.A.'s diet.

Recently the R.A. has discovered a new favorite dining spot - on top of our convection oven.  On the one hand inappropriate, on the other we're pleased he has kept this newest quirk within the food realm and has not chosen, for example, to eat on top of the television set.  Take the progress where you can!

He does not sit on top of the convection oven while it is on (at least not as of this posting.)  The oven is on top of a small table and next to the oven we have stacked some cartons of soda.  The R.A. stands on the cartons and lays out his food on top of the convection oven.  An added bonus is that this new set up is directly in front of the kitchen's air condition unit, another electrical gizmo that provides the R.A. hours of interest.

So far he has not attempted to dine "al convection" while the oven was in use.  I am fairly certain that when this situation arises it will elicit a heated round of "greco-baby" wrestling as I know the R.A. will be more than displeased that he won't be allowed to eat on top of the hot oven and will tenaciously pursue use of said oven.  What's great about my life is that there is always something to look forward to.  Or as I like to think of it, waiting for the other shoe to drop.  Bon appetite!

Friday, September 2, 2011

Another Relaxing Friday Night

Tonight we treated ourselves to dinner out.  Actually it's not so much a "treat" as much as an "exercise in misguided optimism/idiocy."  Frankly, by the time Friday night comes around I'm pretty pooped and incapable of making good decisions.  Therefore when my mother suggested going out I thought it was a good idea.

The R.A. quite enjoys a good dining experience.  Tonight he was especially jazzed because his sister was not accompanying us.  My daughter adores her little brother and lavishes him with attention - and we all know how much people on the spectrum love to be bombarded with unrelenting attention (for you autism neophytes - people on the spectrum don't like being bombarded with unrelenting attention).  The R.A. was positively giddy on the drive to the restaurant.  He was stimming for Britain and happily caterwalling.  No doubt the caterwalling translated to, "Free at last!  Free at last!  Lord Almighty, I'm free at last!  Or at least until she gets home but heck, I'll take it!"

Of course, our first stop was MacDonald's for the requisite french fries and extra ketchup.  Making the stop doesn't mean that he will eat them.  There's only a 50-50 chance that he will but not purchasing them is not worth the risk.  When ordering the fries you have to be vigilant about the extra ketchup thing.  Many an outing has been ruined by the discovery of a ketchup deficiency.  A "ketchup diva" is not conducive to a pleasant dining experience.  Neither is a "napkin diva" so you also have to make sure they put in more than the regulation two napkins in the bag.

Sometimes (okay, most of the time) by the time the french fries, ketchup, napkin thing is all taken care of, I'm exhausted.  Tonight I soldier on and we finally get to the restaurant.  Settling ourselves at our table is another big project - who sits where is usually dominated by where to put the R.A. so he can't escape out of the booth or frighten others diners (or my mother.)  Properly arranging the napkins, fries, and ketchup is another one.  Once we are all set my mother immediately decides we should sit at another table.  Always over achievers, we add another  big project and pack up the fries, ketchup, napkins and our various assorted junk and re-settle at another table.

I should note that there was another little boy on the spectrum at the restaurant.  He and the R.A. acknowledged each other in the traditional ASD way - not making eye contact and emitting loud noises.  Not to brag but my kid's noises were louder and had a more pronounced "shrieky" quality.  I guess his forfeiting sleep the previous night in favor of practicing eardrum splitting yowls really paid off.  He is nothing if not a perfectionist.

It was one of our usual low key, relaxing meals.  Despite the R.A. repeatedly attempting to climb over me to lunge at the window behind me (he loves looking out windows - it probably has something to do with reconnaissance) I still managed to eat some of my dinner.  And while it was still sort of warm-ish. 

FYI - tonight the R.A. did not eat the fries (which explains why he had so much time to devote to his window lunge exercises).  Part of the problem may have been my mother inadvertently ruining the french fries/napkin/ketchup arrangement.  Her dish mooshed the napkin which in turn smeared the ketchup.  Game over.

All in all it was a good night.