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."

Wednesday, July 27, 2011

Magical Autism World

The trip to Disney got my husband and I talking about how popular a park for families on the spectrum would be.  Families would love it and recent studies show that there are more families on the spectrum than neurotypical families.  Okay,  that last part is not true.  But our numbers are growing rapidly and there are enough of us that a "Magical Autism World" would be a HUGE money maker.  But then we started talking about logistics and realized it would not work because:

1. Everyone would require a special needs courtesy pass to cut the line.  Sure, the line for the rides would be horizontal but it would still be a line.  We would just be walking sideways in the line.  Impossible for our stroller or wheelchair bound friends.

2. The sensory issues would be a nightmare - the lights are too bright, the lights are too dim, the lights are the wrong shape, there are an even/odd number of lights; the noise is too loud, the noise is too muffled, the noise is not in the correct sequence; the seats are too hard, the seats are too soft, the seats are the wrong color, the seat smells bad; the ride is too fast, the ride is too slow, the ride is facing the wrong direction; the balloons are too big, the balloons are too small, the balloons are too scary and elicit sharp high pierced, never ending screams.

3. Just thinking about the concession stands makes me start twitching: the burger buns are the wrong kind, the soda is the wrong brand, the mustard is in the wrong packets, the straws are the wrong color, the napkins are white, the napkins are brown, the napkins are too thin, the napkins are too thick.  And don't even get me started on special diets!

4. I can't even consider roaming characters.  Those poor S.O.B.'s would require hazard pay.

To accommodate everyone's needs, the park would need to be quite large.  We basically would have to take over the state of Rhode Island and that would just be for the parking lot.  The park itself would take up the entire state of Connecticut.

So unfortunately, "Magical Autism World" will never be.  My husband and I did imagine what the R.A.'s own personal "MAW" would be like:

1. Most of the rides would consist of swings of various sizes and colors.

2. All souvenirs and game prizes would be Thomas the Tank Engine themed.  All areas involving souvenirs and prizes would have adequate space to arrange said souvenirs and prizes in the correct formations on the floor.

3. Food at the concession stand would consist of: purple Popsicless (and only purple -" I do know the difference between purple and red, thank you very much"), John Deere gummies (yes, oddly enough there is such a thing and of course it's pretty much one of the only three kinds the R.A. will eat and yes, the others are equally odd and equally hard to come by), Pringles in individual containers, medium sized bags of Munchos, Cheerios, raw baby carrots, Dum Dums, Wheat Thins, McDonald's french fries and McDonald's chicken nuggets.  The condiment section will consist of ketchup, ketchup and ketchup.  And for those who don't care for ketchup there will also be ketchup.  To wet one's whistle there will be a large selection of "Clifford the Big Red Dog" apple juice boxes to choose from - don't even think about sneaking in any "Clifford the Big Red Dog" apple/grape mixed juice boxes.

4. There will be no picnic tables to sit and eat at.  Instead, throughout the "R.A.'s Magical Autism World" there will be low tables on which to leave food items.  That way the R.A. can wander around the park and graze on his tasty tidbits - his preferred method of dining.

Now who wouldn't want to spend the day there?  What could be more relaxing?

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