The lebelinoz family went to a party!

Every once in a while, one of our friends might actually forget how painful it is to have two autistic kids at a house party.  It's happened again today.  Let's check the old LeBel-party scoreboard…

Number of drinks spilled:  zero

Number of broken

• glasses:  zero
• picture frames: zero

• family heirlooms:  zero

• bones:  zero

Number of times the hostess told Mr LeBel to

• stop his children from [fill in blank] ______________:  zero

• keep his hands to himself:  zero

• keep his "eyes up here, mister":  zero

• leave immediately:  zero

• never come back:  zero

• "get stuffed", "f*ck off" or equivalent:  one (lesson learned :  insulting a British woman's gardening ability is akin to insulting the cooking ability of a woman from any other culture)

Number of people staring at the kids until they were either bitch-slapped or told the kids are autistic:  one

Number of actual slaps delivered:

• LeBel to others:  zero
• Others to LeBel:  zero
• LeBel to LeBel:  zero
• Total slaps:  zero

Number of suicide attempts by:

• cutting:  zero
• poison:  zero
• drowning:  zero
• electrocution:  zero

• running into traffic:  zero

• jumping off a balcony:  one
• How many floors:  four, technically, but he would have landed on the downstair's neighbour's balcony one floor down.

Which proportion of the suicide attempts were successful?  0%

Number of party-stopping shrieks:

• by LeBel:  one
• by others:  zero

Number of meals successfully eaten (max one per person):

• by LeBel adults:  two
• by LeBel children:  zero

Number of minutes endured until the children became unbearable and it was time to leave:  100 minutes

The final score, therefore, is acceptable.  Not bad.  The shriek cost us dearly, but may have saved us the huge penalty score for a successful suicide attempt.  Maybe next time, we'll prepare the kids with a few social stories and possibly even manage to cram a hotdog into one of the children... Then again, maybe next time Mrs LeBel will actually slap a pompous mom with normal kids and a staring problem!

Epidemic? What epidemic?

A study shows the rate of autism among adults is about the same as children, except most adults don't know about it:

 

University of Leicester researchers present further evidence from first ever general population survey of autism in adulthood (…)  There was no evidence of an 'autism epidemic' of marked increase in people with the condition.  [Dr Traolach Brugha, Professor of Psychiatry at the University] says "Overall our findings suggest that prevalence is neither rising nor falling significantly over time".

(lifted from http://healthnewsdigest.com/news/Asthma_Issues_670/Most_Adults_With_Autism_Go_Undiagnosed.shtml).

This is a bit of a fly in the ointment for anyone who asks the question:  "What is causing this recent explosion of cases of autism?"  Answer:  There is no explosion.  Diagnosis got better.  Instead of dismissing autistic children as "eccentric" (at one end of the spectrum) or "mentally retarded" (at the other end of the spectrum), the medical community got better at pinpointing the exact problem, and parents and teachers are more likely to give the diagnosed the help they need.

The article goes on to note that most of those diagnosed, being at the higher-functioning end of the spectrum, weren't even aware that they were autistic.  This lends credit to my own theory that, due to misdiagnoses, higher functioning autistic people tend to suffer more than the lower functioning ones (a fate, I'm glad to said, probably happens a lot less often in the 21st century).

There are still lots of questions around this mysterious thing called autism.  As an example, a recently released University of California study suggests children conceived in winter had a significantly higher risk of being diagnosed with autism than those conceived in summer:  http://www.abc.net.au/news/stories/2011/05/06/3209926.htm.  To which I say:  "What the ****?  It's a seasonal thing?"

Television reviews

I can't help but notice a prevalence of autism on television.  Don't believe me?  Think Big Bang Theory, The Middle, The IT crowd and Parenthood.  The first three are light-hearted sitcoms:  they don't specifically mention autism, but two (arguably three) of the characters are clearly on the spectrum.  As I've already reviewed books and blogs about autism (apologies to those favourite bloggers who I only found after I wrote the blog reviews:  I will make an updated version), it only makes sense for me to do television, too, because I spend a lot of time watching TV and I have a strange, almost savant-like ability to remember everything I've ever seen on it (I wish I could bring that skill to the office to help me remember more important things).

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

The Big Bang Theory

In a sitcom about nerds, Sheldon is a theoretical physicist who obsesses over his daily routine.  He can never be swayed whenever his mind is made up.  Examples:

• In one episode, the gang take an 8-hour train ride from LA to San Francisco instead of a 1-hour flight because Sheldon is obsessed with trains.  As explained by another character:  "Three of us wanted to fly and Sheldon wanted to take the train, so we're taking the train."
• He talks out his toddlerhood potty training routine while he's peeing, ending with "Shake twice for Texas".
• He never sways from his schedule of when to eat certain foods:  Upon learning that his roommate's girlfriend had made waffles for breakfast on a Tuesday, when waffles are reserved for Saturdays and Tuesdays are meant to be oatmeal days, he says:  "I must admit, they do smell good."  Pauses.  "Too bad it's oatmeal day."  Dumps them into the trash can.
• He could never learn to drive.  Several situations revolve around him convincing people to drive him somewhere.  There is a whole episode dedicated to him attempting to learn how to drive, and he's hopeless:  he doesn't get it in the end.

Favourite line:

• [upon being told he's impossible]  I can't be impossible because I exist.  I think what you meant to say is:  "You're improbable"

Here's Sheldon's answer to Rock, Paper, Scissors:

http://www.youtube.com/watch?v=Kov2G0GouBw

The show never explicitly states that Sheldon has Asperger's, but it's so obvious to me that he does.

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The IT crowd

Another sitcom about nerds, this one about the IT staff at a British company (though it's never clear throughout the show what the company does exactly).  The Asperger's suspect in this episode is called Morris Moss.  If you've never seen the show, here is a sample of Moss's symptoms:

http://www.youtube.com/watch?v=VffZACvr2B4

For all the off-the-wall Asperger-type  behaviour, I don't think Moss is autistic.  He occasionally shows an understanding of human emotions and can choose to make connections with people.  Here, Moss uses a website called Bluffball.co.uk to pretend he's interested in soccer and make new friends:

http://www.youtube.com/watch?v=NKHyqjHqQLU

This lands him in hot water when he actually gets dragged along to a soccer match:

http://www.youtube.com/watch?v=MjC38Z4T6zc

Autistic or not (I'll let you decide), what I like about this show is the implication that all his strange quirks are a part of Moss which he embraces:  he wouldn't be happy any other way.  A bit like my boys:  I can't imagine them any other way.

I also like the implication that Moss's neo-autistic behaviour is just another one of the many crazy personality types.  Everyone in the show is nuts!

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

The Middle

This is a show about a family with three children who don't quite live up to their parents' expectations.  The oldest is a football hero who is forever embarassed and annoyed by his parents' mere existence.  The second oldest, while much more respectful and loving of her parents, has never succeeded in anything in her life.  And the third child is Brick:

http://www.youtube.com/watch?v=3pAXibCj1NA

The show takes everything that's funny about Aspergers and rolls it into the one character.  No tantrums or speech therapies or massive meltdowns.  Just weirdness and obsessions and an innocence that comes from not comprehending the concepts of making friends, empathy or lying.  Pretty much what one would expect from seeing an autistic child in a funny, light-hearted show.

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

Parenthood

This soap opera about an extended family has a character named Max, a boy who is diagnosed with Asperger's syndrome early in the series.

Okay, I'll admit it:  I never watch the show.  And the bits I do catch (my wife watches it while I'm reading blogs on my lappy on the other side of the room) seem to have no connection to real life.  Like the scene where the parents are told the therapies will be expensive:  "I don't care!  We'll spare no expense."  Or the scene where they find a great school but learn the waiting list is years long:  the parents get the boy into the school straight away by showing up, meeting the principal and acting cute and annoying.  Or any scene which implies the parents can forget all their autism-related problems when they're alone in the bedroom.

Oh well.  They are trying to make a successful show, after all.  If they made the autism too real, it wouldn't be popular, watchable television.  What I find interesting, however, is that the creators have snuck in a family of minor characters with their own autistic kid:  people who the main characters have befriended through their common bond of living with autism.  The father has autistic traits (he's obsessed with those funny, low-riding bikes and he talks about them constantly), the son likes to roll around in the grass like an animal, the mother is a bit nutty…  My wife gets all worked up when she sees this family because she thinks the characters are all stereotypes, and she hates the way the main characters look down their noses at this other family, as if to say "Oh my God, I hope we don't turn into them".  I think the other family is a more realistic portrayal of a family with an autistic child.

But I won't say more on the topic because, like I'd said, I've hardly watched it.  I would love to hear your opinions on the matter, though.

It could have been us

A four-year-old boy was fatally struck by a car just outside my house last week.  He ran out onto the street against a red light while his mother and him were collecting his older sister from school on Friday afternoon.  Anne heard the screeching tyres and somebody scream.  An off-duty fire fighter managed to resuscitate the boy, but he died early Saturday morning at Melbourne's Royal Children's Hospital.

The child's name was Bram.  At his funeral, his mother—who immigrated here from Germany—spoke about Bram's bubbly personality and about his love of trains.  Because she has three other children, she bravely continued her life as per usual.  She even took her surviving children to the school's fête (=annual carnival fundraiser) two days after the funeral.

Bram was one of those kids who was always fearlessly running ahead of his family, and his mother struggled to keep him near her.  Just like Gaston was, at that age.  Just like Rémi can be when he has his over-the-top tantrums.

I've been thinking about all the near misses Gaston and Rémi have had over the years.  Of all the times one of the boys ran out onto a street when there just happened to be no cars speeding by.  I try to push such things to the back of my mind, but an incident like this brings it right back to the front, and I've found myself imagining what could have happened in this or that situation.

The Chew

My boys, like many autistic kids, are always sticking things in their mouths.  On more than one occasion, I caught Gaston (seven years old) chewing on a tyre from a Lego set as if it were a piece of gum.  The real trouble-maker, however, is Rémi (age six).

Rémi is always mouthing stuff.  He's put teeth marks in all our nice wooden furniture.  He's chewed the paint of the window handles in his room.  He's bitten Anne (my wife) and me several times, as though sinking his teeth into our shoulders enhances the warm, fuzzy feeling of a tight hug from a parent.  I can't let him use an iPod anymore because he's already chewed up several ear buds.  His latest thing is chewing on the collar of his shirt.  On more then one occasion, he's picked up 24 hour bugs which nobody else in the family has caught;  I suspect he's made himself sick drinking dirty rainwater from the garden.

In short, Rémi is always biting, licking or chewing something.  It's a problem, and we need to fix it.  As with all these behavioural (and seemingly insurmountable) problems, we discussed it with his teachers at Western Autistic School, and they had a number of solutions as though they'd dealt with the problem a thousand times before.

My favourite solution is the chew.  This was given to Rémi by the occupational therapist, as part of a new "oral motor program".  It's essentially an indestructible tube of silicon which makes a satisfying squeaking noise when chewed.    The teachers offer it to him before lunch and play times, he chews it for a few minutes and then he gives it to an adult.  Similarly, whenever they catch him chewing on his shirt, they offer him a few minutes with the chew and he hands it back when he's done.  I've seen him use it at home:  it seems to me that his brain turns off completely while he's chewing, he gets bored after a few seconds, and he moves on.

The theory is to satisfy his primal need to chew stuff.  He still seems to prefer chewing on our wooden furniture and remote controls, though.

Oral motor programs must be commonplace.  If you google "chewlery", you'll find dozens of online shops catering to disabled children, selling (ugly) jewelry which is specially designed to be worn by children and chewed on.

These programs might not work straight away, but I think Rémi will eventually learn that chewing on some things is okay and other things is not.  We just need to gradually change his preferences.

Maybe we'll even get our hands on some of that god awful chewlery.

Real Estate Rant

In Melbourne (indeed, in most of Australia), property has traditionally been sold through auctions.  House auctions were rare when I lived in Canada, but they've been common in Australia in all my eleven years here.  They helped fuel a boom:  property values have always gone up since I moved here, and I reckon it's partly due to some bidding wars happening almost as soon as a good property hits the market.

The boom continued through the global financial crisis which saw house prices crash in the United States and the United Kingdom, with Melbourne house prices growing quickly though 2009 and the first half of 2010.  Things started slowing down halfway through last year.  More and more auctions occurred without any bidders present.    Or there were bidders, but the auction was passed in:  meaning the highest bid wasn't high enough to satisfy the seller.  The seller has a minimum number called a reserve, which needs to be surpassed at auction to avoid passing in.

My one and only experience with auctions is with the house which I am currently renting in Kensington.  The owners have decided to sell, and I was dying of curiosity to see the result.  So I came along to the Saturday afternoon auction.

Fortunately, one of my friends who has way more auction experiences than me was there.  He talked me through it.  The first thing he said was that he was surprised how few people there were.  Successful auctions have nearly one hundred people present.  This one had barely twenty people, and I recognised most of them as neighbours with a passing curiosity for either real estate in general or this house in particular.

The auction started.  "Can we start the bidding at $720,000?"  That sounded weird to me:  I knew they wanted $800,000 to $900,000 for this place (I was later told the reserve was $810,000).  Why would the auction start at such a ridiculously low price?

The auctioneer went on:  "The auction starts at $720,000.  Going up in increments of $10,000, the bidding starts at $720,000.  Any bids of $720,000?  How about $730,000?"  I must have missed something:  the price had already gone up and I didn't see or hear anyone bid.  "That's normal," says my friend.  "Nobody has bid yet."

The auctioneer goes on:  "$730,000?  Increments of $10k.  Does anybody want to bid $730k?  How about $740k?"  Now I know I've missed something, but my friend assures me a second time that nobody has bid.  The auctioneer pleads for $740,000, looks discouraged, goes inside (my home!) to discuss with the vendors, comes back after a few minutes and asks for $750,000!  After a few more pleads, he says the auction has passed in and thank you all very much everyone for coming.

Of course nobody bid!  A bid would have been like lifting up a big red flag with the word "sucker" on it.  A bid would have said "I want this place so badly that I'm willing to go through a bidding war when the place has just hit the market."  Any bid in the $700k - $800k range would have been greeted with "Oh, so you are interested enough to pay that sort of money for this place.  Let's see if we can bring you up to the even higher price which the owners really want."  And a negotiation process would have started.  I am sure auctions get great results for great houses, but they seem like a waste of time for crumbling little fixer-uppers like this one.

The funny part is that I suspect there were interested parties in the crowd.  Parties in a position to walk away from the deal, who figured they could sit tight and wait for the owner to sweat a bit.  When this house has been on the market for a while, an offer much lower than $810k will seem much sweeter to the sellers.

I never go to auctions:  I think they are a waste of time.  If there are bidders, they'll push the price up higher than it should be.  I bought a house in February 2011.  The same house had passed in at auction in November 2010, then stayed on the market for months (probably because the house's price was too high to begin with).  Unlike at an auction, I was in the driver's seat of the negotiation, and managed to get a bit of a bargain for it (by Melbourne standards).

Melbourne's crazy property market won't crash (at least, the chief economist where I work makes some pretty convincing arguments as to why it won't crash).  It will, however, slow down enough for people's salaries to catch up to it.  The fact that the buyers are fed up with these farcical auctions is definitely encouraging to those looking to buy.  Buyers who think they can barely afford a place of their own just need to be patient, look for fixer-uppers which have been on the market for a while and steer clear of auctions.

L'oeil du tigre

Melbourne is full of people who want to impress my wife, Anne, with their French connections.  It might be because France is considered to be so posh and exotic over here, and they want to demonstrate they are also a little bit posh and well-travelled.  Or they've been putting France up on a pedestal and  they see Anne as their connection to this mythical Shangri-La full of great food, latin lovers and medieval chateaux.

Whatever the reason, there's always someone at a party pointing out the nice cheese to my wife.  Or people she's just met telling her about their one trip to France.  Or telling her about their French friends.  Or telling her about some French food they've cooked or tasted.

Once, while trying to book a music  therapist, the person at the other end of the line asked where Anne was from.  Upon learning Anne is French, she asked "Can I sing some French opera for you?"  Before Anne could answer, she was listening to very loud French singing through the phone.  When it was done, she gave a polite "That was very good", followed by a "How old are you?"  It was a grown woman at the other end of the line.

One day, our Local Sticky Beak (=nosy neighbour) was sitting at an outdoor café.  She stopped Anne, who was walking by.

Local Sticky Beak:  "Oh hello, I forget your name again" (note:  this is how every conversation with LSB starts)  "Oh, Anne, that's right.  I'd like to introduce you to my friend.  She has a very French name:  it's Adrienne."

Wife:  "That's true, that is a very French name, though not necessarily from my generation.  In fact, whenever people from my generation hear that name, the first thing they think of is Rocky One."  Then she screwed up her mouth to the right, curled her upper lip and gave her best "Yo Adrienne" Rocky impression.

LSB practically choked on her latté.

McDonald's party

 The best part of sending our kids to a special school for autistic kids, in my opinion, is meeting the other parents.  Whenever there's a school recital or a bring-your-parents-to-school day, we think nothing of seeing a kid (ours or someone else's) having a massive meltdown, or stimming, or running away.  We all have a big laugh about it or ignore it completely, as the situation warrants.  No awkward silences, nosey questions or bewildered misunderstandings:  we all understand autism enough to deal with the usual autistic things.  Everything seems so normal here.

The best example of our mutual understanding was around this time last year, when Gaston went to a classmate's birthday party.  Our first classroom birthday party, it was to be on a Saturday afternoon at a McDonald's near the school.  The little girl having the party, it turns out, is a twin.  And her twin, also autistic, wasn't in Gaston's class, so his class also got invited to the party.  There were over a dozen autistic kids at this party!

At one point, I noticed the McDonald's staff members trying to engage the kids in some sort of pin-the-tail-on-the-donkey game, and getting absolutely no love for their effort.  The kids were just playing in the children's play area, melting down when they were given the wrong colour of balloon (or maybe that was just Gaston) and eating ice cream cake.  Basically just acting like autistic kids.

I approached the birthday twins' mother and jokingly said "Look at those poor teenagers trying to get the kids to play an organised game.  Didn't you tell them the kids are autistic?  Ha ha."  She gave me a conspiratorial smile and said "No, I didn't."  We both burst out laughing.

Western Autistic School

The school logo is a student's drawing of a Melbourne tram

The school year has just started.  If that sounds a little bit strange to my northern hemisphere readers, remember that it's summer over here in Melbourne, Australia.  The summer holiday between school years starts just before Christmas and ends around the start of February.  This year, school started on Friday 4 February 2011.  And no, it's not customary to start the school year on a Friday:  we all think it's weird, too.

I have previously blogged about our attempts to send our kids to regular preschools.  It only seems fitting, at the start of the school year, to talk about Western Autistic School, the public school which caters to the autistic school-starters in the western suburbs of Melbourne (website is here: http://www.westernautisticschool.vic.edu.au/).

Autism is perfectly normal here:  you would think nothing of seeing a kid stimming, or melting down, or having his hand held tightly by a staff member out of fear he might run away.  There's a trampoline in the gym.  There are electric hand dryers in each bathroom, because many autistic kids are scared to death of noisy hand dryers and they need to become accustomed to the infernal machines.  Bike riding lessons and toilet-training are often a big part of the first year's curriculum.  There is not one big schoolyard where a kid might get lost in a crowd:  instead, there are multiple small playgrounds where small groups can be closely supervised.

The classes are small:  any classroom will have 6 to 8 students (usually just six), two teachers and one teacher's aide.  That's a staff-to-student ratio of 1 to 3!  There are onsite speech therapists, occupational therapists and psychologists, all working full-time.  Some of the staff have been working with autistic kids for decades.

With so many staff members on hand, the school spends a lot of time matching students to the right classroom.  Little Johnny screams all the time and little Timmy has a tantrum every time someone screams?  It might be best not to put them both in the same classroom, then.  That might seem like common sense, but it's not the sort of problem which is likely to be diagnosed and fixed in a traditional school environment with 1 to 20+ staff-to-student ratio.

The place is a like an Alcatraz island for autistic kids:  not even my two little Houdinis could escape it.  The knobs on the doors are so high that shorter-than-average adults struggle to reach them.  To get in and out of the schoolyard, one needs to pass through a veritable labyrinth of gates, again with the latches so high that no child could reach them.

Shopping and cooking are part of the weekly curriculum.  My first instinct about the cooking lessons was to dismiss them as a waste of time:  they are "soft skills" which the kids would eventually pick up anyway.  But the teachers work on language throughout the whole lesson.  Plus they have used the lessons to help Rémi overcome his squeamishness about certain textures.  They've also used them to help Gaston try foods he wouldn't normally touch with a ten foot pole (crazy foreign foods, such as rice).

In fact, everything which is done in this school seems to revolve around language development.  Even lunch and recess are opportunities to learn language and social skills.  With such a high staff to student ratio, there is always someone watching them and helping them learn how to play appropriately.  We've heard reports of Gaston pushing other kids—a problem which the staff addressed almost immediately.  More recently, Rémi surprised me when my friend Julie came around for a visit and he looked her square in the eye, waved and said "Hi Julie".  He definitely didn't learn that from his Mom and Dad.

The school does a lot of excursions, many of them to local parks, shopping centres and grocery stores.  The school does other educational excursions, too:  to the museum, to the zoo, to the airport.  But for the most part, the staff teach the students about everyday life:  how to behave at a mall's food court, for example.  I reckon this has had a huge part in helping my boys behave in public places.

Every child has an individual learning plan.  When Rémi went through a phase of having a meltdown every time we went to McDonald's, we told his teachers.  So they made a point of going to the local McDonald's once a week.  And, just to make us out to be liars, Rémi behaved perfectly.  The staff did eventually witness some of the bad behaviour, though, and I think they have contributed greatly to its eventual taming.  Similarly, when Gaston went through a phase of screeching every time we told him not to do something, we put our heads together with his teachers to devise a plan to overcome the problem.  We're still working on it, but he has come a long way.

The school's ultimate goal is to place every child into a regular primary school by the end of their fourth year of school.  It's not possible to place every child, but the staff is certainly trying.  Anne and I went to a parent-teacher session which was all about the eventual placement into a conventional school.  It was a real eye opener:  we would need to find a school ourselves, and not every school could cope with an autistic child (this will be the subject of a later blog).  Gaston's teachers reckon he'll be ready for placement by the end of his fourth year (he's now starting his third year).  To help him along, Gaston occasionally does some traditional classroom learning with a 1 to 20 staff to student ratio.  It's only a couple of hours each week, to get the kids accustomed to the conventional teaching style.

Years ago, when it became obvious that Gaston and Rémi would not be able to go to a conventional school, I had to get over the stigma of sending my boys  to "special school".  What made things more difficult was the fact that Melbourne adults are obsessed with schools—it's a British way of thinking, and I'm glad I didn't grow up with that sort of snobbery.  I got over it quickly and did what was right for the boys, and boy am I glad I did:   the non-stop teaching, the special facilities, the specialised staff, the personalised education plans, the regular excursions…  The combination of all these things must work.  Both my boys' language skills have developed immensely since they started school, and they've learned a lot of social skills.  They've got a long way to go if we expect them to go to a conventional school, but I have faith this school is right for them.

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.

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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?