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."

Sunday, May 29, 2011

Escape Tonight!

My husband is usually the one to come up with entertainment plans for the family.  This might be because he is braver than I am or maybe more optimistic than I am.  But what I really thinks drives this is he works second shift for child care purposes and gets far less sleep than I do and we all know sleep deprivation can affect one's judgment and make a person do some crazy sh#*.

This week my husband decided we ought to try a drive-in movie with the kids.  As we work different shifts, during the week we primarily communicate via e-mail.  When that one showed up in my work in-box, I read it and re-filed it in my "Hell No" folder.  As I finished reading it my mind created the news report that would result of such an endeavor: "And in local news, the perpetually clueless parents of a severely autistic boy were unable to monitor him in a locked and parked car at a drive-in movie theatre.  With said stupid parents in said vehicle, the little boy managed to hotwire the vehicle and drive it through the theatre lot and two towns over before state police were able to pull the car over.  After the incident the parents claimed they were so happy that their son was keeping himself occupied doing something not involving sharp objects that they were loathe to intervene."

My husband, however, is on to my filing system.  When there was no response to the e-mail he finally asked me about it.  He looked so upbeat and hopeful I agreed that we should try.  In preparation for the event I did what I usually do and tried to forget all about it.  Sometimes it works in that everyone else forgets too.

This time it didn't.   Saturday afternoon my husband was all boundless Boy Scout-like energy in trip preparations.  And it is like a trip, anytime we go anywhere.  There is always packing involved.  This time we had a backpack, a large canvas bag, blankets, pillows, jackets, and food.  Anyone looking at us would have thought we were off for a three day trip to a place that didn't have stores.

Off we go. The drive-in is not quite an hour away from us.  Of course, our first stop was McD's.  And then, not taking any chances on the ketchup front, my husband stopped at the supermarket and picked up a bottle of ketchup.  He was not going to leave anything to chance.  My husband was also tickled because the store was having a condiment sale and not only got the ketchup reduced but mustard too.  In his mind the endeavor was already worth it.

We finally arrive at our destination, two hours before show time.  Both my husband and I are somewhat nervous about this big block of time that we have to occupy before we even get to the movie.  We've already discussed that real possibility that after all was said and done we might not get to see the movie.  My husband decided it was a risk worth taking, particularly as he'd already made out on the condiments.  At this point I was pretty much along for the ride so what the heck.  Let the chips fall where they may.

As we don't go out a lot, my daughter is beside herself with excitement.  She is thrilled to be at the drive-in, eating her nuggets in the car.  She can't wait to hit the 6 foot by 6 foot "playground."  She keeps asking when it will be dark so the film will be shown.

The R.A. is also enjoying himself.  He is a fan of long car rides and swings.  The R.A. noticed all 6 of those in the "playground" as we passed them.  As we did arrive so early my husband and I knew we couldn't have the kids sitting in the car for all that time.  It wouldn't be good for them and it would give the R.A. a really long time to study the mechanics of the parking brake.  So we took them to the "playground."  Our biggest fear was once we let the R.A. out of the car we would not be able to get him back in but we felt we had no other choice.  We were hoping that if he did struggle on re-entry into the vehicle, since it was a warm day his palms would be sweaty and that would affect his grip when he'd latch on to the car door and we'd be able to maneuver him in.  Yes, this was not our first rodeo.

My daughter quickly realized that the "playground" was nothing more than a training ground for the RMV as all 8 pieces of equipment had really long lines.  Not fun.  The R.A. quickly claimed an infant swing.  One of the perks of his "no nutrition astronaut" diet is that it keeps him extremely slender and he still fits in infant swings.  He was loving it.  Time killing for him was solved.  Bribed her with an ice cream and she was all set.

Finally it was time for the film.  Initially the R.A. rejected being re-inserted into the car but a quick re-visit to the swings and he got it out of his system and we were good to go. 

I don't think the R.A. watched one minute of the film.  I don't think he even realized that there was a movie.  The R.A. spent most of his time climbing around the interior of the vehicle.  He especially enjoyed climbing between the front and back seats, either plopping on to his father's lap or just landing on top of his sister (who is so used to having to do activities despite her brother's antics, barely noticed, she would just shift her body so she could see the screen.)  The R.A. also had a ball playing out scenes from horror movies.  He would get very quiet in the back seat and then come pouncing right next to his victim.  I think he was testing our heart rates.

It was a warm evening so we had the front windows open.  It wasn't long before the R.A. noticed them and decided tonight was the night for escape.  My husband and I did spend some time trying to block the R.A. from climbing out the windows.  If we were quick enough we'd roll up the window.  If not we'd have to grab him.  The people in the car to our right did look startled when we'd yell, "He's getting away!  Quick!  Put up the window!  Grab his leg!"  You know what, I saw how much junk food they let their kids eat.  They have some nerve judging us.

After about 45 minutes of car aerobics, the R.A. was spent.  We looked back to see he had strapped himself into his car seat, grabbed his pillow pet, tucked himself in with his jacket and was snoring gently.  The rest of the family enjoyed the film without the fear of being kicked repeatedly in the back of the head by his solid alien feet.

It was supposed to be a double feature but by the end of the first film I was spent.  My exhaustion wasn't so much from being up so late but rather from the stress of the preparation and worrying myself through the activity.  As established earlier, the R.A.'s dad loves a bargain and part of the drive-in's attraction was the cost - $20 - and that was for two films!  He loves numbers and was breaking down how much we had actually saved by creating scenarios about how much a movie for four would actually cost as well as a movie for two and not even including dinner (or a large bottle of on sale ketchup.)  By making him leave early I had decreased the sale value of the endeavor.  Despite that disappointment we did agree the evening had been a success and my husband is already planning future trips to the drive-in.  Maybe next time we'll save even more money by packing our own bottle of ketchup.

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