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, June 8, 2012

I Don't Have a Problem. I Can Stop Anytime I Want.

As I have posted a few times, the R.A. enjoys his McDonald's french fries.  Actually, "enjoys" is a monumental understatement.  He doesn't so much "enjoy" the fries as he has what appears to be an addiction to them.

From the get go, the R.A.'s relationship with McD fries has not been what one would call "healthy" and I'm not talking calories or sodium.  His obsession with them has drastically increased over time.  Currently it's to the point where he spends most of the night following me around and demanding, "Feh fies.  Feh fies."  He doesn't buy it when I respond, "No french fries tonight.  French fries go bye- bye."  Anytime the R.A. hears the kitchen door open he bolts into the kitchen and yelps excitedly, "Feh fies! Feh fies!" convinced the person who has entered the house is delivering the fries.  He then frisks the poor slob to make sure he/she is not hiding any fries down trousers or under shirts.  As his addiction grows, so does his desperation.  The R.A. has taken to grabbing my husband or me by our hand (or shirt) and dragging us to the kitchen door.  He will then place our hand on the knob and instruct, "Feh fies" meaning, "Okay, obviously you're just too clueless to get it so now I'm showing you in addition to telling you.  Go out and get me the french fries, stupid."  The R.A. is also now so frantic to get his fry fix that anytime I go near my purse he interprets it to mean I am going out and therefore will pick up his fries.  His despair at being denied his fries has now amplified so much that yesterday morning he attempted to corral his father to do his bidding for fries.  The R.A. did not take kindly to his father's irrational excuses for not providing the fries such as fries are not acceptable for breakfast or that one couldn't procure McD fries at 7:30 AM.

We understand that it's not the addict talking (or yowling) but the addiction.  Someone once told me that addiction alters an addict's brain so that he honestly believes he will die without his fix.  In the R.A.'s case it's more like the R.A. honestly believes we will die if he doesn't get his fix.

Today we had a meeting at the R.A.'s school concerning his new food plan.  Basically they are going to work on getting him to eat a diet that does not consist primarily of man made items whose ingredients are not found in nature.  Their strategy is to use the R.A.'s beloved McD fries as a bartering tool - "If you eat one bite of broccoli you can have one fry."

Although they are very in tune to the R.A., the staff did not fully understand the depth of his McD fry addiction, failing to recognize that it goes beyond the actual fry and includes an entire process - involving presentation.  His teacher wasn't sure if the fries really were the R.A.'s most treasured edible treat stating that a few weeks ago, she did buy him some McD fries.  She reported that when she gave the fries to the R.A. he refused them, pushing them away with an emphatic, "No, please!"  I then asked how she presented the fries.  Puzzled she responded, "On a white dish."  Her tone inferred - Obviously on a dish.  How else would one eat food?  My husband and I chuckled knowingly - such a rookie mistake.  I pointed out that the dish was the problem.  The R.A. won't eat food in a dish, on a dish, or near a dish.  For some reason he finds tableware and cutlery offensive.  I then proceeded to tell the staff that there is very strict protocol involved with his McD fries and nuggets.  Even though the R.A. is addicted to the fries and nuggets, if the presentation is even slightly incorrect, he won't tolerate them.  If you're lucky he will only refuse them.  If your presentation is outrageously awry, the R.A. may throw the fries and nuggets to the floor in a rage.  If your presentation is deemed extremely perverse, after sweeping the food to the floor he will yowl with such fury that he will make himself throw up. Bon appetit!

My husband and I then explained what proper McD nugget and fries presentation entailed:
  1. It must be ordered as a "4 piece chicken nugget and small fry" meal.  It is imperative that you order this particular meal.  Don't try to save money and order the 10 piece meal with the large fry and think you'll just put some nuggets and fries on a dish or even on a napkin for the R.A.  This is completely and utterly unacceptable.   Illogical neuro-typical logic would celebrate getting two meals out of one and further determine that the R.A. still gets the same amount of chicken and fries so what's the big deal?  The big deal, you witless dope, is that you have totally removed the authorized packaging from the equation - the small cardboard nugget box and white paper fry wrapper.  And no, you can't substitute the large nugget box and red cardboard fry container.  Do you see where you went oh so wrong here?  If not, you deserve the R.A.'s wrath.  May the Kitchen God be with you.  You're going to need it.
  2. The laying out of the food must follow proper procedure.  The nugget box is opened.  In the empty side squish a generous puddle of ketchup.  Keep in mind that no matter how much ketchup you squirt in there, the R.A. will always demand more as his meal progresses.  And no, you can't save yourself subsequent ketchup demands by starting with a huge puddle of ketchup.  The R.A.'s command doesn't have so much to do with his ketchup supply running low as with keeping you on your toes and making sure you are paying attention to him and fulfilling his every outrageous whim.  All dictators require their subjects' undivided attention and no, it doesn't matter if you are in the shower or sleeping.
  3. Fries are placed on a white napkin next to the opened nugget box, adjacent to the ketchup side.  Don't try to fool him with a folded up paper towel.  Your foolish audacity will be soundly punished.
  4. The R.A. never eats the nuggets.  These are primarily used as utensils to scoop up ketchup.  Despite the fact that he never eats the nuggets, this does not mean anyone else is allowed to eat them.  This is true even if the R.A. has finished eating.  Once the R.A. has concluded his meal, the nuggets are to go into the trash. He primarily brings them to the trash.  If someone else does he will follow that person to make sure he puts the nuggets into the trash, even going so far as to check the trash in case you tried to pull a fast one and pantomimed throwing the nuggets away.  One time, when the R.A. had concluded his meal and was in another room, my husband popped a nugget in his mouth.  It was as if the R.A. had been somehow alerted to the breach in protocol.  My husband said the R.A. flew into the room and practically tackled him onto the couch.  The R.A. then climbed up his father and pried my husband's mouth open and removed the nugget.  The R.A. caterwauled in indignation something along the lines of, "That'll learn you!"
Okay, you know your kid is too much when even the autism experts at your school who deal with severely autistic children all day long are flabbergasted into a long silence.  Finally the director of the early childhood program managed, "Wow."  After another minute she mumbled, "I knew he was rigid but still..."

We spent a bulk of the meeting detailing the whole procedure while the director took copious notes.  Every now and then she would mutter things like, "Oh, boy."  "Geez." "Amazing."  She would also exhale loudly from time to time and shake her head.


Like everything else with the R.A., meal time with the R.A. isn't so much a time for relaxation as a military exercise.  Again this is why when the invasion comes I'll be first in line to be vaporized.

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