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, August 31, 2012

Code No Please!

Membership in the Special Needs Club is not exclusive, especially if you are a card carrying member of the Autism Spectrum Division.  It seems that nowadays one can't walk 50 paces without tripping over someone on the spectrum - even less paces at my house and it would probably also include a shove. 

There's a saying, if you've met one person on the autism spectrum, you've met one person on the autism spectrum.  The autism experience also varies from family to family.  Parents sometimes have differing opinions on autism topics. For example, there is the whole issue of "labeling." Some parents don't want their kids coded, believing a label might limit their child's potential or make the child feel different.  That's their decision.  But let me just say this and then I'll shut up about it.  If a parent thinks that strategy will keep his kid from being labeled, think again.  It's just that instead of being labeled by a developmental pediatrician, your kid will be labeled by some other kid at school.  I personally would rather someone trained in child development assign a label to my kid. Plus that way you've got a better shot at getting a good out of school placement.  Okay, I will shut up about that now.

Other parents don't mind the label.  I fall into that category because let's face it, the minute someone sees the R.A. toe jumping, flapping for Britain, and caterwauling, the cat's pretty much out of the bag.  There's no "passing" for neurotypical.

I'm pretty up front about the R.A.'s autism.  Frankly I think it's due to habit.  It's the culmination of years spent chasing after a sprinting, yowling, "dead-set-on-destruction" R.A. while I bellow, "He has autism!"  It's really more of a warning to the innocent bystanders at the park, the beach, the mall, etc.  It's sort of like, "The British are coming!" or "Man your battle stations!" or "Danger, Will Robinson!"

I have no qualms telling people the R.A. has autism.  I recall after one particularly harrowing church experience I turned to my husband and said I wished I could put the R.A. in a sandwich board.  One side would say, "I have autism."  The other side would say, "What's your *@$%# problem?"  My husband put the kibosh on that idea, pointing out: 1. the R.A. would never leave the sandwich board on as it would impede climbing 2. the R.A. couldn't wear something that had *@$%# on it to church.  I countered that *@$%# wasn't a real swear word.  My husband counter-countered that even implied swear words count at church.  Sulkily I conceded.  *@$%#!

Confession time.  Occasionally, at the park or beach, I won't broadcast that the R.A. has autism because I enjoy seeing the puzzled expressions on the other parents' faces as they observe his antics. Their bewilderment is amusing. ( I also have a t-shirt that has a picture of 19th century armed Native Americans that has the caption, "Homeland Security.  Fighting Terrorism Since 1492."  I like it because it makes white people uncomfortable. *@$%# that nasty streak!)






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