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, October 28, 2011

Fine Dining

With the threat of impending snow (which leads to the greater threat of being stuck inside the house for Kitchen God knows how long with my family), I decided to venture out for dinner tonight - get out while the getting's good.  My daughter had a play date so it was just the R.A., the R.A.'s grandmother, the R.A.'s uncle, and the R.A.'s mom.

Following  protocol, we selected a restaurant that was acceptable to the R.A. (with the tacit understanding that once we arrived at said restaurant the R.A. was within his rights to aggressively and loudly reject our selection.)  Again, following protocol*, we made the requisite stop at McD's for "fench fies, chickn, ketsup" before hitting the restaurant.  When placing our order at the drive-thru we also made sure to request ketchup.  Yes, we were going to a restaurant that would have ketchup but there were no guarentees that it would be the correct ketchup or in the correct format.  We just can't play fast and loose with that sort of thing.  Keep in mind that living with someone with Autism means doing damage control even before anything happens.  Not that it's possible to predict catastrophe but why leave anything to chance if you can help it?

We arrive at the restaurant and scout out the location, looking for a table not too close to other diners, preferably near a window.  Fortunately we found a cherry spot.  My mother and brother went to place our orders.  I got the R.A. settled.  Of course the dopes at McD did not put any ketchup packets in the bag.  My immediate reaction was one of anger which was quickly replaced by panic as this restaurant did not have ketchup packets but rather one of those pumps that you use to plop ketchup into a small dipping container - unacceptable.  The McD dopes, however, did pack the requisite white napkins - maybe I could salvage this.  It was all a question of what was more important - the ketchup packet or the napkin. I quickly found out that apparently both are equally important when it comes to meal presentation.  When I presented the R.A. with the little tub of ketchup he yowled angrily and indignantly at me and to further make his point attempted to sweep the container off the table.  Point well taken and ketchup container whisked away to adjacent trash bin, I did some more quick thinking (obviously still a gazillion times too slow for the R.A.).  The ketchup on a white napkin is imperative - wheels sl...ow...ly turning - so what if I just put the ketchup on the white napkin?  Sounds reasonable (I stupidly think.)  I went over to the other side of the restaurant, out of sight of the R.A., and pumped some ketchup on to a white McD napkin.  Cautiously I presented this to the R.A.  He eyed it and me suspiciously.  Although he wasn't convinced, the R.A. did allow it to remain on the table so it was a partial and grudging acceptance.  I'm not saying it didn't rankle him.  Frequently during our meal the R.A. would grab my hand and chin it like he was teaching me a lesson while yowling loudly.  Fortunately it was my right hand and I eat with my left hand so it didn't interfere too much with my meal and I got to eat most of it.

Meanwhile, a young couple sat at the booth next to ours.  Let me just say that I am not one of those easily offended, "We're Here, We're Loud and Autistic so Everyone Else Needs to Suck It Up" parents.  I don't force other people to endure the insanity when we are in places that the general public frequents. Heck, if my husband didn't make me stay with the family I wouldn't sit with them during meals out.  Believe me, I get it.  If the R.A. is being the R.A. "on eleven," we leave.  The past few years we've probably spent more time leaving places than remaining.  Tonight we purposefully selected a spot "far from the madding crowd."  It's not our fault that despite the plethora of empty tables in other areas of the restaurant the young couple selected the booth next to ours.  Every once in a while the woman would turn and look at us.  Finally they got up and moved to the booth farthest from us in the row.  I wasn't offended.  Fair play to them.  But then she went too far.  On her way out she shot us a dirty look.  That I am not fine with.  The R.A. was not the R.A. "on eleven" so it wasn't one of those occasions where we had to leave or should have left.  My husband and I want to create a t-shirt for the R.A. just for these moments.  On the front it would say, "I have autism."  On the back it would say, "So what's your (expletive) problem?"  Granted it wouldn't be appropriate church garb but would be acceptable for restaurants, especially those that we frequent.  I know I write a lot of silly  and whacked out junk in this blog - that's the way I cope.  But it doesn't take away from the fact that being an autism driven family is hard and sometimes the way other people act adds to the burden.  So if you're not a member of the "stim team," keep your opinions to yourself and keep moving. We autism families are doing the best we can with very little help.  So unless you're offering us a cure, your support, or offering to babysit, zip it.  I'm going to design autism family t-shirts.  On one side it will say: "We're exhausted.  We're overwhelmed.  We're in your community.  Get used to it."  On the other side it will say: "And we're coming to your house for dinner."  Believe you me, that's no idle threat.

*For more information about proper french fry protocol see this link.

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