House rules

The lebelinoz household is a tight ship.  If you want to be a part of this family, there are a few rules which must be observed.  No exceptions.

1. Never, ever EVER turn the DVD player off or change the channel while the final credits are rolling.

2. "Bedtime" is merely a suggested activity.  Once the lights are out and Mom & Dad shut the door, you're free to do whatever you want…  No matter how many times Dad comes in the room, puts you back in bed and switches the light back off.  If you happen to find someone has removed your light bulb earlier that day, then that's your bad luck.

3. Under no circumstances must all the couch cushions remain on the couch.

4. Before using the blue silicone oven mitt, always make sure to chase the children through the house with it, while singing the first few bars of "Mack the knife".  Failure to do so may result in persistent badgering by said children.

5. Toast crusts go on the floor.  Not the bin.  And certainly not in the mouth.

6. If you step away from the computer, even just for a second to get a cup of water from the kitchen sink three feet away, it is within everyone else's rights to close all your windows and apps and to take over the computer.

7. Bookmarks must never stay in the book.  They are meant to be pulled out of the books and enjoyed on their own.

8. "I" is "you", not "I".  For example, if you want some milk, you must never say "I want milk".  It's "You want milk".

9. When Mom says "It's bedtime", always scream "You want milk!" in response.

10. Under no circumstances must ice cream, yoghurt or apple sauce be eaten at the table while seated.  It is preferable to do several laps of the lounge room and do several bouncy stims on the sofa while enjoying such treats.

Guest posting at Special Happens

Gina over at Special Happens is doing a guest blog series on the subject of friendship.  It seemed appropriate to talk about my two boys as they seem to be growing up as each other's best friends.


The link is here:  http://specialhappens.com/2011/01/28/two-is-not-worse-than-one-by-alain-lebel-guest-post-for-friendships-struggles-humor-triumphs-and-angels-series/

Hon hon hon

Me to Anne while watching The Colbert Report:  "I've noticed a trend on American television where everyone makes fun of Canadians. I don't know if I like it."

Anne to me: "Welcome to my world. Hon hon hon."

You know, that was the first time in my life that I've actually heard a French person say "Hon hon hon".

Why blog?

I started blogging because I love to write, I like the idea of keeping a diary and I honestly think sharing the difficulties of life with autistic kids helps others cope with their own.  Also, I'm a bit of a world wide web showman:  I love writing random stuff on Facebook and seeing what reactions I get.  Facebook has allowed me to express my sense of humour and to remain friends with old friends and family who I never get to see.

What I found, though, is that blogging is so much better than writing occasional random thoughts on Facebook or Twitter.  Here are some of the great side effects I found after several months of blogging:

• When you write stuff down, you organise your thoughts.  I've already learned this through years of academia, R&D and being a general all-around Excel and database guru.  But this is the first time I tried it for my actual life (apart from a few pathetic attempts at doing a household budget).  I've thought more about how to educate the boys and maximise their language development when we're playing games.  I've researched a couple of relevant subjects, such as the Wakefield controversy and a plethora of autism books.  Writing about preschool gets me thinking about primary school, and how lucky we are to have the dedicated autistic school.  I, like many others, use writing as an excuse to research topics and wrap my head around them:  I didn't know half as much about Wakefield until I tried to explain it in my Vaccination post.

• Sharing the experience of autism difficulties does help others:  it helps me!  I read about other people's lives with their autistic kids.  I feel so…  normal!  I'm part of an international (mainly Yank) autism community which is forever discussing integration into regular schools, community acceptance, stimming, tantrums…  All the subjects which are close to my heart.

• I made new friends, in the form of other bloggers.  If you can call people you've never met "friends".  It's sounds strange, but I do.

• I've learned to appreciate the kids for who they are.  I always did, but writing down some of the funny things they do, sharing it with the world, having people write "lol" in response, reading similar stories about others, all makes me realise how great they are.  And some of my favourite blogs are the ones which find the humour in living with autism.

And the #1 best side effect of blogging:  I stopped hitting my kids.

This blog started out as a log, a diary which was updated almost every day of our 2010 trip to Tasmania.  The original notes had way too much detail, most of them edited out to make the thing readable.  At some point, I'm still not sure why or when, I decided to leave in all the times I lost patience and hurt Gaston.

I found, reading back on my notes, that I had smacked Gaston five  times.  I have tried to stop before but never could.  Seeing it in writing, however, came as a complete shock to me, especially when I know it will be out there in the public domain forever, being read by friends, family and complete strangers.  The frequency of the abuse comes as the biggest surprise:  five times in one week.  Anne has lost patience and smacked each of the kids once in her life (once with Gaston and once with Rémi), and she went to sleep crying both nights.  I was apparently smacking the kids once every day or two, and never gave it too much thought even with Anne giving me an earful about it, many times.

Since the Tasmania trip, there have been no more smacks.  I've learned to be more patient.  And if I ever start my own religion (which is how I plan to fund my retirement), I will definitely replace the old Catholic-style confessionals with blogs.  They're much more effective.

"I'm not Rain Man"

I wrote this update on Facebook the other day, under the banner "Sh*t my wife says".  It got more "Likes" and comments from family than my usual witty banter.  Any thoughts as to why?

Wife: "Let's see... 170 square meters, $16/square... Alain, what's 170 times 16?"
Me: "Wtf? I'm just supposed to know that off the top of my head? I'm not Rain Man!"
Wife: "Come on!" *snaps fingers*
Me: "Okay, um, 2560".
Wife: "See, that wasn't that hard!"

lebelintaz - Dove Lake

 

This blog essentially started out as a travel log.  I kept a meticulous diary of the 2010 family trip to Tasmania.  Unfortunately, even after a few rewrites, my travel blog wasn't very readable and was probably only interesting to me.

Still, I think I've managed to salvage a couple of posts which give some sort of insight into life with two autistic kids.  There was an afternoon in Sheffield, when I learned a bit about Gaston's photographic abilities.  And there was our outing to Cataract Gorge, where I write about the difficulties of disciplining a child with nearly no speech.

Today's entry is about our day at Cradle Mountain, where an afternoon of intense exercise and male bonding probably did my boys and me a world of good...  though not without a few dramas.

-----------------------------------

We got to Cradle Mountain Lodge at 11:15.  Our room wouldn't be ready until 2 pm, but there were those spacious lounges you expect to find in luxurious wilderness lodges, complete with giant stone chimney and roaring fire, big leather couches and a bar.  A complimentary 45-minute guided walking tour was starting in fifteen minutes.  Gaston and I did the tour.  Anne and Rémi had a cuppa (=cup of tea) in the lounge.  And so it goes in our family:  the parent who wants to give the other parent a little break takes care of Gaston, while the resting parent gets to have a quiet moment with Rémi.

Gaston, three other guests and I went on The Enchanted Walk, a boardwalk path around the grounds.  We saw a wombat and two or three wallabies.  We also learned a thing or two about Tasmanian devils, though their local one seems to have disappeared.  The tour guide and I decided it must have died of indigestion because he had recently found an echidna spine in some devil scat.

When we got back to the lodge, Gaston's first action was to smack his mother.  So I immediately took him on another walk.  This one was shorter and unguided, and Gaston asked for his mother the entire time.  Afterwards, back in the lodge, he behaved a bit better and Anne bought him some hot chips.

At 2:30 pm, Anne had a full spa treatment which would last three hours.  To keep the boys busy, and to test my theory that they are better behaved when they have had plenty of exercise, I decided to do the circuit around Dove Lake in the main national park.  This was supposedly a walk for families who are accustomed to walking, and takes an average of two hours.  We did it in a little over two hours.  It was very challenging:  there was lots of climbing and descending on narrow paths and lots of puddles to avoid.  It was cold that day and we got a light sprinkling of rain.  By the end, our feet were wet, we were cold, hungry, tired and thirsty.  I had pushed Rémi way too hard.  He had peed his pants (and peed on a tree for the first time in his life;  I don't think he disliked it).

The walk was an emotional roller coast for all three of us.  For the boys, their confidence grew as we started the walk.  They enjoyed a good hour (possibly more) of the walk, but they became overwhelmed by the length and difficulty somewhere around the halfway mark.  For me, worrying about the boys overwhelmed my appreciation of the surrounding natural beauty.  We were walking a circuit around a lake surrounded by towering mountains and all I could think was "be careful" and "don't fall in" and "how much further to the end".

When Anne is there, I'm the one who is always saying "don't worry about it" and "let them live a little" and "if he electrocutes himself then he'll learn not to do that again".  With her gone and me stupidly putting the boys in this difficult situation, I became the worry wart.  

(As an aside, this corroborates what Anne and I had recently learned in a television documentary on the role of a father in a child's life.  When the mother is around, he'll be rough and over-stimulating—to her great annoyance.  However, when he begins to spend a lot of time with the child, the levels of feminine hormones in his body actually increase dramatically.  The result:  he'll become more protective.  I don't know about feminine hormones in my body on that day, but I know I was a lot more protective than usual on this particular afternoon.)

Rémi whined for the first ten minutes, then was trotting along happily for the first hour.  He became aware of puddles and made some effort to avoid them—this was a step forward for him:  he usually ignores whatever is underfoot.  When I eventually (after half an hour) let go of his hand and let him walk, his wobbling drunken-sailor gait drove me mad.  I was sure he'd fall off a narrow boardwalk:  we were walking on high ones with no hand rails and there were not a lot of trees on the slippery slope between our path and the lake.  For the last hour of the walk, he had inevitably dunked each foot in a shallow stream or puddle.  He was gradually wetting himself, and our first experience of weeing au naturel was not 100% successful:  he had mainly peed on my hand.  He became unhappy as the walk progressed, but he mainly trudged on without complaints.

Gaston held my hand tightly for the first ten minutes.  As he grew more confident (and as the path became too narrow for three people to walk side-by-side), he started running ahead, stopping and pretending to be surprised when we caught up:  "Oh, it's Daddy!"  Earlier that morning , when we first saw snow near the lodge, I had shown him how to make and throw a snowball.  He felt the need to repeat the exercise every time he saw a bit of snow on the side of the path, asking my permission to throw it each time.  So for over an hour, Gaston was really enjoying the Dove Lake walk:  running, laughing and throwing snow.  He burned a lot of his natural hyperactive energy and he laughed a lot.  

Once, he was so far ahead that I got scared and starting calling out to him.  After about the fifth call, he screeched his usual screech.  I was so happy to see him that I kissed him on the head and there was no drama—he took a swing at Rémi but I ignored it.  

As the walk started getting long and miserable, Gaston started asking to go back to the car.  He wanted to hold my hand more and more, and he wanted me to help him over puddles (as I had already done with Rémi a few times).

Somewhere around the three-quarters mark, after Rémi and I had struggled over some big wet stone steps, I realised I hadn't seen Gaston for a good few minutes.  I got really scared.  I must have screamed his name over a dozen times before he screeched in reply.  This time, when I caught up with him, I yelled at him.  The usual dramatic yelling match ensued.  He even took another swipe at Rémi.

Too tired to cope, I gave him a smack in response to his screams.  He cried.  He purposefully stood in a stream to convey his displeasure.  He started making like he was going to leave the path, which scared the hell out of me but I didn't dare show it.  For once, I used the technique of ignoring and it worked:  he stopped trying to leave the path.

When we got near the end and saw the parking lot in the horizon, everybody's spirits picked up and we practically ran towards the car.  The sun was setting.  Ours was the last car left at the end of the day:  we had walked from 3:05 pm to 5:15 pm.  It had been Gaston's and my third walk of the day, and Rémi's longest walk ever.  I started the engine, strapped the boys into their car seats and cranked the heat up.  I had a full water bottle which I'd carried all afternoon and a near-empty one sitting in the car:  I redistributed the water evenly between the bottles and they each drained theirs.  I ran towards the now-empty ranger station to sign out from the walk (you need to write your name and the time when you go on bush walks in national parks;  if you don't sign out afterwards, a search party will look for your bodies in the morning).

I then drove as quickly as I could to get back to the lodge before the end of Anne's spa treatment.  We arrived at our cottage at the same time as her and, thankfully, she was the one who dug up some clean clothes for them and laid their soaking shoes out to dry in front of the fireplace.

We had dinner at the lodge's Tavern restaurant, which was pub-style with a relaxed atmosphere.  The kids were as good as they ever are in restaurants.  As usual, the kids act better when we eat at a restaurant attached to the hotel where we're staying, and the staff and fellow patrons are more understanding about difficult behaviours.  Surprisingly, they didn't eat very much.

Here, we all slept in the same room.  So it was an early night for all.  Except Rémi spewed twice and wet the bed.  In the end, he slept with Anne and me.  Which he loved.

The next day, the kids were well-behaved and very very happy to spend a bit of time with both their parents together.  They ate a truckload for breakfast.  We went on one little easy walk in the afternoon.  We did it as a family and the kids really enjoyed it.  I think they liked having their mother there for the walk.  I also think that, after the Dove Lake circuit, they found they quite enjoyed bushwalking.  They marched along confidently.  For the first time ever since the kids were born, Anne and I walked side-by-side while the boys walked side-by-side.

My autistic kid drew on my homework

(I love Notebook 2010)

Who the tweet are you?

I read this great article about Donald Triplett, the first person in the world to be diagnosed with autism (I'd already mentioned it before in my Pants on Fire blog entry). I figured I'd share it with my new-found friends from the blogging world on Twitter:

I soon got a tweet-mention in reply from someone I've never heard of, implying that autism is man-made, due to the use of mercury in vaccines and such:

I replied with a polite: "thanks, but no thanks". Well, anyway, I gave him all the politeness he deserved: 

Tanner's Dad, to show me he does read books, pointed me to The Age of Autism: Mercury, Medicine, and a Man-made Epidemic:

From what I've gathered since, the book is about how mercury in vaccines causes autism. To quote one of the reviewers on Amazon (this reviewer gave the book one star, where one is the lowest possible score):

It speaks volumes about this book that days after its release, yet another of the dozens of studies directly debunking its claims was published in Pediatrics. The only response the authors have on their website is to simply dismiss all inconvenient research as part of a giant, invisible conspiracy.

I won't go into detail about why this book is crap. If you do need convincing, here is a blog which can probably explain this sort of thing better than I can: 

http://scienceblogs.com/insolence/2010/09/the_mercury_militia_parties_like_its_2005.php

I also learned that Tanner's Dad works for some sort of Jenny McCarthy website. Anyway, there's a great feature in Twitter called "blocking". I used it to make my problem of the unwelcomed heckler go away. Not before dropping one last satisfying zing, though:

I'm not surprised that this sort of book can make a lot of money. Learning your child is autistic can be a very confusing time in your life. There are no easy answers. People would love to blame some outside force for bringing autism into their lives. Preferably a faceless corporation which might be sued one day. A few unscrupulous people out there are preying on the confused masses, and are making tons of money selling books like this one.

What surprised me was how this guy came out of nowhere in what felt like a random sniper attack. Do you think the book's publishers are paying some guys to watch blogs and Twitter for stuff about autism? He came out of nowhere when I tweeted a link to an article on autism from a newspaper! Have any of you had similar experiences with your tweets? Your blogs?

Pants on fire

One of the most popular urban myths about autistic people is that they are incapable of lying.  I know for a fact that this is not true.

A fine example of an autistic person lying comes from the story of Donald Triplett. He is the first person to ever be diagnosed with autism. I first read his story in the Australian Financial Review;  I managed to find the exact same article in The Atlantic online. It's several pages long:  I recommend you read it when you have the time.


Donald has always been famous for his uncanny ability to count quickly. As local legend goes, when he was a small boy, somebody asked him to count the number of bricks on the schoolhouse wall, and Donald knew the number straight away. The writer of the article asked him about it:

But he never could count bricks. This, it turns out, is a myth. Donald explained how it had come about only after we’d been talking for some time. It had begun with a chance encounter more than 60 years ago outside his father’s law office, where some fellow high-school students, aware of his reputation as a math whiz, challenged him to count the bricks in the county courthouse across the street. Maybe they were picking on him a little; maybe they were just seeking entertainment. Regardless, Donald says he glanced quickly at the building and tossed out a large number at random. Apparently the other kids bought it on the spot, because the story would be told and retold over the years, with the setting eventually shifting from courthouse to school building—a captivating local legend never, apparently, fact-checked.

Pasted from <http://www.theatlantic.com/magazine/archive/2010/10/autism-8217-s-first-child/8227/>

Other instances of autistic people lying come from some of the blogs which I follow and love. This Scott Lynn cartoon is about how autistic kids are very bad at lying (it is one of the many cartoons about Scott's own life with two autistic boys). 

I've read similar stories from other blogs, including one about an autistic kid whose first lie was to convince his mother that he is sick and needs to stay home from school (if that was your post, please leave a link in the comments… I can't even remember who wrote it).  The lie fell apart after the school bus had come and gone and the kid was suddenly well and keen to have a fun day at home.

Last year, Anne and I witnessed Gaston lying for the first time. He wanted to lay down next to his uncle's pool (on a frosty autumn morning!) and play with the water while nobody was watching him. Anne made him get back in the house, for safety reasons. But Gaston spotted me heading out for an errand with his uncle. He said "with Daddy", meaning "I want to go for a ride with Dad". So Anne let him out, assuming he'd come running after his uncle and me. He went straight to the pool. When Anne gave him hell, he was laughing his head off!

Today, I'm almost sure Rémi told his first lie, without even using words.

Rémi was upstairs, I was downstairs, and I heard several repetitive slams from the sliding door of our bathroom. He has a very annoying habit of opening and closing doors repetitively: it's one of his stims, and Anne and I always try to stamp it out immediately. I ran upstairs to give him the usual talking down, and found him sitting on the toilet.

He never sits on the toilet on his own: he always takes us by the hand and says "I need to pee" and we have to watch him sit down. I'm almost sure he only sat down that time because he heard me coming up the stairs. He only started peeing when he realised he wasn't in trouble: I wasn't about to yell at him for reaching a toileting milestone (sitting down without insisting somebody watched).

So that was Rémi's first lie, though I'm only 75% sure what I described is what actually happened. He might not have been that clever: he might have coincidentally decided he needed to pee after three or four slams of the door. But he's been having so many breakthroughs lately, I'm going to give him the benefit of the doubt.

In a warped and twisted way which only those familiar with autism can understand, the fact that Rémi has figured out how to lie feels like a great milestone.