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, January 6, 2013

To Go Where No Man Has Gone Before


The Holy Grail
Atlantis
The Ark of the Covenant
Popover Mix

Through the centuries men have searched for legendary and mythical treasures, often embarking on dangerous quests, driven by ambition and an unquenchable desire for discovery.  This is the story of one such backward/footie-less footie pajamaed adventurer.

In addition to being plagued by environmental allergies, the R.A. suffers from food allergies.  As he grows older he is outgrowing many of these food allergies.  Thankfully his extreme food rigidity still ensures that the number of foods he will deign to eat is still in the single digits.

We were lucky enough to embark on the Allergy Adventure at the same time we plunged into the Great Autism Adventure.  So while we were navigating the world of Early Intervention, Physical Therapy, Occupational Therapy, Speech Therapy, Music Therapy, and ABA we were also negotiating the world of Food Allergies.  Ever the over-achievers, one condition was not enough for us.  When it comes to food allergies we found that although there are lots of food on the "No" list there are "allergy food substitutes" that promise to be very similar to the actual foods that they are subbing for.  What we also ascertained is that 98.4% of the time that is a BIG, FAT, STINKING lie.  Case in point - Sunflower butter.

Sunflower butter is presented as a substitute for peanut butter.  We quickly determined that not only is it a lousy substitute, it isn't even in the same category as peanut butter.  They are so dissimilar they should not even be allowed to ever be referenced together.  Let me put it this way - Tom Brady is peanut butter. Mark Sanchez is sunflower butter who then gets substituted by the even yuckier Tim Tebow.  See? There is is no comparison among them.

Shockingly, the R.A. soundly rejected the sunflower butter.  We could not blame him.  Sunflower butter has the consistency and taste of something used to caulk a bathtub.

Sunflower butter was quickly abandoned and we plodded on in our journey to discover edible allergy foods.  Then we entered the exotic and sometimes just plain weird world of allergy cookies.  I don't know if some of the substitute ingredients were the result of desperation or a dare.  Finally we hit on a brand that was extremely close to tasting like an actual cookie.  True, it had the weight and consistency of a small hockey puck but it didn't taste like something from the putty section of Home Depot.  And the R.A. liked them.

This is not to mean that our affair with this allergy cookie was not without its trials and tribulations.  As with most crappy allergy substitutes it was more expensive than the non-allergy item but a low interest loan from my credit union aided with that.  And because it almost tasted like real food, other people liked them and stores tended to run out.  Obviously grocery store staff in charge of ordering  those cookies did not have children with food allergies because they often took their sweet time re-stocking them.  My husband did manage to work out an arrangement with an assistant manager at our local market.  I think he finally wore her down with his pleading and tears of desperation.  Sometimes making a scene is a good thing.

Eventually, some of the R.A.'s food allergies abated and he was able to consume more "non-allergy" items, well, at least it said so on paper.  The R.A. moved away from his allergy cookies to real cookies, a day my husband greeted with much jubilation.  Not only are "regular" cookies cheaper but Market Basket store brand chocolate chip cookies are always in stock (of course they are only two levels above allergy cookies in texture and taste which explains why they are always in stock.)

"Wait!" you cry.  "What does a long winded allergy history of the R.A. peppered with Patriots and Jets references (meaningful only to New England fans) have to do with quests?"

I am glad you asked.  The Patriots inclusion is pretty much because they are on a bye week and my husband was telling me about an article some sports jake-hole wrote ranking quarterbacks that ranked Brady third.  I mean, seriously?  Third?  Who wrote the article, Rex Ryan?  Even he can't be that stupid.

Anyway, the reason I included the R.A.'s allergy history is because it is related to quests - the R.A.'s current quest to be exact.

We first became aware of the R.A.'s quest yesterday when my husband discovered him standing on tip-toe on top of our stove brandishing the Stick of Infamy in one hand and clutching a box

popover mix in his other hand.  To access the stove, he had dragged over a small footstool/ladder.  One is supposed to unfold the ladder to expose the steps.  The R.A., ever a man of quick action, didn't have time for that and climbed it folded.  My husband removed the R.A. from the stove top and then wrangled the box out of an incensed R.A.'s iron fisted grasp.  After the intense yet impromptu wrestling match, the R.A. shrieked at his father, "Cookie! Cookie!"  Pointlessly Daddy attempted to explain that the box did not contain cookies, all the while wondering why the R.A. would think it was a box of cookies.  Much to the R.A.'s ever potent fury, the popover mix was returned to its place in the cabinet above the stove.

Never one to say "never" (really, he has never said it), the R.A. was undeterred and determined.   A short while later my husband found the R.A. back on top of the stove with the SOI and box of popover mix. This time he had used 24 packs of diet Coke and diet Pepsi to reach the stove top.

And so it went for pretty much the entire afternoon - the R.A. on his Popover Crusade and his father attempting to thwart him.  It was like a really boring Errol Flynn film.

However, all was not for naught (as I believe Errol Flynn said as Robin Hood) as my husband did decode the R.A.'s mysterious obsession with the box of popover mix.  It dawned on Daddy that the popover box was sort of similar in appearance to the allergy cookie box, hence the R.A. screaming "Cookie! Cookie!" while clutching it.  Seeing as he hasn't eaten an allergy cookie in over three years, this association was astounding, as was my husband's revelation.

I was at work all day yesterday but when I got home, the R.A. was still at it.  In extreme irritation my mother snapped at my husband to hide "the damn thing."  I got the happy task of occupying/tussling with the R.A. in the living room while his father put the box in another cabinet.  Wise to us, the R.A. yowled in rage while attempting to free himself.  Once the deed was done he wrenched free from my grasp and ran into the kitchen.  Like a mad man he surveyed the room.  He then caterwauled something along the lines of, "It doesn't matter what you do!  I will find it as the Kitchen God is my witness!"

My husband then left to run some errands/escape.  A short time later I heard a loud crash in the kitchen followed by an infuriated yowl.  I ran into the room to discover the R.A. on his back on the floor, flailing his arms and legs in agitation and frustration.  Above where he lay the cabinet door was opened to reveal the box of popover mix.  This time to climb the counter the R.A. had used a large plastic container of pretzels and a box containing a "Hello Kitty" chia pet in an attempt to hoist himself up.  Unfortunately he made one critical mistake - instead of balancing the pretzel container on top of the more stable box, the R.A. had precariously balanced the box on top of the pretzels and thus fell, much to his bitter disappointment.

Apparently, even for the R.A., this was the last straw.  Savagely caterwauling he stomped up to his room no doubt to plan his next attack which involved being naked as a short time later he ran down the stairs sans clothing.  I think the R.A. was going for the ancient Celtic warrior thing and was on his way to get a blue marker with which to color himself.  Sadly our little Braveheart was intercepted by his sister who alerted the local authorities (me) who then subjected the R.A. to backward/footie-less footie pajamas (our equivalent of a prison jump suit) as well as to a documentary about Marlene Dietrich which he watched with me, probably thinking it a cruel and unjust punishment.

And no doubt plotting his revenge.





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