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."

Saturday, July 23, 2011

The Most Magical Place in the World - Not

Gentle Men and Good Ladies:
I apologize for a such a lengthy absence and sincerely hope you both forgive me.  My daughter and I were on vacation in Florida because everyone knows mid-July is the best time to visit Orlando.  Correction - second best time.  The best time is hurricane season.

No, the R.A. did not accompany us on vacation.  He has not been on any overnight vacations since he was two years old.  Needless to say, although he enjoyed himself immensely on that trip, the rest of the family did not and we pretty much vowed never again.  To demonstrate how bad a trip it was, my husband and I, the loosey of gooseys, have not broken that vow.  Thus, I took my daughter to Disney and my husband "stay-cationed" at home with the R.A.

It was important to me for my daughter to have this special vacation.  When it comes to special needs families I think it is hardest for the siblings because the disability dominates so much of the family's life.  Nothing is done spontaneously.  All plans revolve around managing the special needs kid -  D-Day took less strategic planning (and I'll warrant less screaming and bloodshed.)  I bet my daughter doesn't know that when other families go out to dinner they do not hit McDonald's first.

My daughter had never been to Disney.  I was pretty confident that she wanted to go - every time a Disney commercial came on the TV she would turn to us and say wistfully, "Gee, I just know Disney World is great.  I wish we could go."  Although the R.A. thinks his parents are dumber than mud, we do understand subtleties.  We got her hints so off we went to the "Magic Kingdom."

Or as my daughter referred to it, "the Unmagical Kingdom." 

We hit the Magic Kingdom on our first day in Orlando.  It was about 95 degrees with 300% humidity, in other words, a typical summer day in Florida.  The Magic Kingdom was very crowded.  Apparently the entire country of Brazil relocates to Orlando for the summer.  You can't walk 5 paces without falling over a Brazilian.  I heard Portuguese more than I heard English.  In addition, the theme park is taken over by the "Stroller Mafia."  If you don't trip over an over-excited Brazilian teenager wearing mouse ears, you will be taken out by a double-wide stroller that is decorated with Mickey Mouse balloons.  This meant that the average wait for the popular rides was 3 hours.  No kidding.  And that's with the inappropriately named "Fast Past." 

Upon arrival at the "Unmagical Kingdom," my daughter was shocked to learn that we would have to wait in lines for the rides.  One of the "benefits" of having a special needs child is the special needs pass.  Many amusement parks offer passes that allow special needs kids, and often their families, to cut the lines.  My daughter hasn't waited in a line for a couple of years.  When she learned we would have to wait in lines with the rest of the "unwashed masses" she said, "I guess it might have been good to bring the R.A."

I actually found the whole Disney experience rather cult-like.  We had one of those all inclusive Disney packages that included hotel and transportation to all the Disney parks.  They saturate and indoctrinate their guests pretty thoroughly.  The shuttle buses played only Disney music that was heavily peppered with tips about visiting Disney parks as well as strongly urging guests to book their next Disney vacations before this one was even over.  They also isolate their guests from the rest of the world.  Since we relied on the shuttles, our movements were dictated by Disney - no running out to CVS or Wendy's.  This also meant that instead of paying $2 for a travel sized container of sunblock, you paid $5 at a park or at the hotel gift shop. 

At the hotel there was a cafeteria where they sold mugs for $14.  We were encouraged to purchase mugs as you could refill them for free at any Disney theme park.  This really stuck in my caw.  Okay, I'll pay outrageous prices for a cheeseburger because things are more expensive on vacation.  All right, I'll listen to the Disney soundtrack ad nauseum as we are at Disney.  But I draw the line at being coerced into my beverage choices.  The only things offered for fountain drinks were soda and I'm one of those quasi-Amishly strict parents that doesn't allow my kid to drink soda at every meal never mind that I don't.  I just couldn't bring myself to purchase the mugs.

But lots of people did and let me tell you, those mugs were a BIG THING.  We would see people lining up first thing in the morning for the various shuttles, clutching their mugs.  People would be wandering around the resorts and theme parks slurping from them.  In the cafeterias and parks, next to the soda fountains were sinks to rinse the mugs and you should have heard people clustered around that area - "Steve, did you rinse your mug?"  "Does Terry need her mugs rinsed?" (Doesn't that sound sort of risque?) "Give me your mug, I'll do yours while I do mine." (Made me raise my eyebrow when I heard that one.)  Mugs, mugs, mugs.  "Our leader, Uncle Walt, created the mug on the seventh day.  And it was good.  We worship at the soda fountain altar."

Once we jettisoned the Magic Kingdom and I accepted that I would pay more for our food and beverages on vacation than I did for our monthly utilities, we had quite a fun time.  We visited the other Disney theme parks which were far less crowded.  I don't think we ever waited more than 15 minutes for any ride and that was without the special needs pass. 

Disney World would definitely be an "unmagical" experience for the R.A.  Primarily because there aren't any McDonald's at Disney and that would surely make the R.A. say, "Happiest place on Earth my a#*."

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