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, May 25, 2011

Ketchup, Part Trois



Ketchup, Part Trois?  What is this obsession with something so insignificant?

If you just asked that, you obviously do not live with someone on the Spectrum.  

Yes, ketchup is a very, very big deal for my family.  It can make the difference between a completely miserable experience and a sucky one.  That is significant.

You see, not only is having ketchup available important but so is presentation.  What can I say, the R.A. is very strict about presentation.  Maybe he is the home planet's equivalent of Martha Stewart.

To illustrate this, let's take a little journey down memory lane:

It is an early afternoon in the fall.  Obviously my husband and I are completely sleep deprived (The R.A. is a strong believer that sleep is for the weak.  I think he is determined to toughen us up.  It's like living with an ancient Spartan.) and therefore lacking judgment because we decide to take the family out to lunch to a place where we have never been as a family.  It is a bit of a finer establishment than we are used to - Papa Gino's - but we are feeling giddily daring.  We decide to do our usual McD fry pick up and head to Papa Gino's.  The balls are in motion.

So first we parade into Papa Gino's with our McD's. bag.  As it is a new place the R.A. is reluctant to enter the building, never mind sitting down at a table. He demonstrates his reluctance by clinging to my husband and croaking out, "No! No!"  My husband and I struggle to get him settled which really looks like Greco-Roman toddler wrestling and an unfair version as it's two adults against one child.  Meanwhile my daughter decides to sit at a separate table.  No one blames her not even her parents.  Hey, most times I would sit at a separate table if I could.  In a separate restaurant.

It is at this point that we realize a family from our daughter's new school is also in the restaurant.  We know this because my daughter joyfully announces, "Look!  There's Bobby!"  My husband and I jerk our heads in that direction to find the other family staring at us, open-mouthed.  Apparently God thinks the pressure of breaking in a new establishment is not enough - God is also a Spartan.   It is thrilling to introduce new people to our version of the dog and pony show.  We weakly wave at the new family.  They return a similar greeting and nobody makes eye contact, not just the R.A.

We turn back to the task at hand.  I continue getting the R.A. settled while my husband goes to the counter to order the pizza.  The only thing that has been holding the R.A. together is the promise of his fries and ketchup.  Proscribing to the custom, I lay a handful of fries on a napkin and squirt a puddle of ketchup on the napkin.  The R.A. views it and has a Martha Stewart-like nutty.  I am shocked.  I have followed the procedure.  What could be the problem?  My husband has returned just in time to witness the fury. 

"What did you do?" My husband barked, neatly grabbing the box of table napkins that the R.A., in his rage, has shoved across the table.

"I didn't do anything!" I barked back, managing to grab the ketchupy napkin before it was thrown to the floor.  As I glared across the table at my husband who was cradling the napkin holder it occurred to me.

"It's the napkins!" I cried.

"What?" My husband snapped.

"Look, they're brown!"  I gestured wildly.  In the McD fry and ketchup system the napkin is clearly white.  "We've messed up the presentation!" I hissed.

My husband looked down.  "Good God!"  He grabbed the McD bag.  "They didn't pack any napkins!  They never pack napkins!"  And then before he went off on his usual tirade against McD's for never packing napkins, ketchup, or barbecue sauce I cut him off, my panic rising.

"What are we going to do?"  Then, a moment of sanity.  "There are some white napkins in the car!"

My husband dashed out the door so fast you'd have thought there was a sale at B.J.'s (his obsession).

It was at this point that Bobby's mother approached my daughter who was sitting serenely at her solo table.  I should also note that my daughter had her back to her own family.  Again - I don't blame her.  The woman no doubt saw my husband race full speed out of Papa Gino's and was concerned for the little girl with the wacko parents.  Bobby's mother's concern and confusion was probably tripled when my husband booked it back into the restaurant in nano seconds, triumphantly holding a pile of white napkins in his raised hand announcing, "I've got the napkins!  We're safe!"

We all exchanged awkward smiles and the woman tiptoed back to her booth.

I am glad to report that the issue was the wrong napkin and that once we had arranged his lunch on the proper napkin, the R.A. graciously settled down.

Unfortunately my husband then proceeded to have an allergic reaction to something in the restaurant so we had to leave.  This was even more unfortunate as by that point the R.A. decided he quite liked the ambiance of the new restaurant and was quite reluctant to leave, illustrating this point by attempting to latch on to the table for dear life as we tried to go.  We didn't even look in the direction of the other family.

We haven't gone back to Papa Gino's since.

And that family hasn't spoken to us since.  Their loss - we are obviously a fun group.

2 comments:

  1. Thanks for sharing! Our son R is averse to white napkins; can't have them anywhere near the dinner table. Our toddler son, H, loves to hold white facecloths, sort of like a security blanket. Man, it's not pretty when they're in the same room, but H seems to get a kick out of R's reactions. Sigh.

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  2. Wow! Your house sounds almost as much fun as mine! Thank you for posting. It's nice to hear other families' experiences.

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