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, June 20, 2011

Let Them Eat Cake!



Because I sure as hell won't! The Reluctant Astronaut

This past Sunday an amazing thing happened.  Well, a couple of amazing things happened.  First, the R.A. sat at a dining room table in a chair while other people were also sitting at the table.  He then allowed the other people to remain at the table.   The R.A. toddled over himself, bringing his Pringles and juice, plopped down on the chair and began eating, looking very much like a "regular" person.  I nearly fell over I was so surprised.  Normally the R.A.'s preferred method of eating is a grazing system.  He strolls around, stops, picks up an item of food, eats a bit (or merely contemplates eating it and tosses it to the ground as he deigns it is unworthy of consumption), then resumes his wanderings.  No wonder the R.A. hardly weighs anything.  He's perpetually burning calories, even while eating.  The calories don't have a chance to set in.

But it got even more amazing.

There was birthday cake at the gathering.  Every once in a while, more for sh#*s and giggles, my husband and I attempt to try the R.A. on a "new" food.  Apparently, on Sunday, we were feeling a bit "devil may care" as my husband and I decided to see if the R.A. would try some cake.

Due to his severe food allergies which manifested themselves when the R.A. was a baby, the R.A. has never had a bite of ye ol' typical cake and frosting - birthday cake.  I remember when the time rolled around for his first birthday I researched "allergy" birthday cakes.  I came upon a series of allergy cookbooks authored by a woman whose son had food allergies.  She had a recipe for a birthday cake and swore it was so scrumptious that it was the only cake she served at her son's birthday party for all the guests, those with allergies and those without..  With an endorsement like that, I made it for the R.A.'s first birthday (also providing a "regular" birthday cake for attendees.)  Let me just say that if my first ever orientation to cake was that cake, I too would never touch another piece of cake in my whole entire life.  That cake wasn't nasty.  It wasn't good enough to be nasty.  The cake was so gross that it was spit out of one's mouth immediately upon entry.  I couldn't believe the cookbook author made her guests eat it.  She was probably one of those overbearing cows that everyone was terrified of so they didn't dare tell her how gross-tacular the cake was.  Heck, they probably didn't dare try to bow out of her spawn's blasted birthday party. That cake was so bad that I brought it into my work where those people eat pretty much anything including expired condiments, two day old donuts left an entire weekend in the open air, and refrigerator items that are so old that they no longer resemble what they were in their past lives.  They passed on that cake.  It didn't help that the cake looked like cow patties wrapped in tar (but not as airy and light as cow patties wrapped in tar).  You couldn't even rise above, "I bet it tastes better than it looks." 

The following year I found a recipe for an edible allergy cake.  Honestly, this cake was pretty good.  It was actually a cake that they used to make during World War Two when there was rationing.  Fortunately it didn't taste like it has been made during World War Two.  Unfortunately, either the R.A.'s autism had really set in and his food texture issues started as he refused the cake or the damage had been done by the previous year's "cake" debacle and he refused the cake.  Luckily my brother really liked the cake and ate the majority of it.  I had been threatened by co-workers not to bring in any cake leftovers.

Back to Sunday.  We laid the cake out in front of the R.A. as he sat at table.  My husband and I were fully prepared for him not only to refuse the cake but to smear it on the table and squish it into the floor  to demonstrate his annoyance (we weren't at our house which explains our cavalier attitude about this anticipated possible and highly probable outcome.)  We even included a fork, something extremely foreign to the R.A. as he is strictly a finger food man.  Everyone sat very still and watched.  Initially the R.A. sat, looking quite puzzled.  He raised his hands over the cake.  My husband and I moved closer, on the ready for when the R.A. grabbed the plate and tossed it to the ground.  All of a sudden the R.A.'s hands froze over the cake.  He cocked his head and then picked up the fork (we took a step back in case he used it like a shiv.)  The R.A. then began to attack the cake, stabbing at it repeatedly until the cake was nothing more than crumbs.  He seemed to quite enjoy himself, ceasing only when he smeared frosting on his hand, thus wigging himself out and ending "The Great Cake Massacre."  Believe it or not, this was a victory of sorts.  With the R.A., as with many people with autism, the first step with anything new is tolerance.  Therefore, the fact that the R.A. interacted with the cake was an extremely good thing.  We're hoping he'll expand this positive interaction to people sans fork stabbing.  Baby steps.  Baby steps.

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