New Year resolutions

1. When I suggest NY resolutions to others, I will try to keep the list to less than ten items.  Unless they really, really need more.

2. Continue making fun of all my Mac- and iPhone-loving friends and colleagues for being mindless Apple-worshipping drones getting sucked in by all the hype.

3. Convert at least ten more people to use Amazon's Kindle.  That thing is frigging awesome!

4. Continue antagonising Lynn, Big Daddy and jillsmo.  Otherwise, they might never learn how to behave in public.

5. Continue antagonising a couple of young wankers at work.  Otherwise, they might never learn they're wankers.

6. Take the boys to the movies for the first time in their lives.  It won't count if we need to walk out halfway through the film, so it may take a few tries.

7. Blog every week.  This list counts as this week's entry.  Single photos with smarty-pants comments don't count as entries.

8. Teach the boys stuff.  Details are a bit sketchy, I know…

9. Whenever a Canadian Facebook friend complains about winter, to always comment "Winter! Lol!" or "Snow! Lol!"

10. Take up smoking.  People look damned cool when they're smoking.  Lord knows I need all the help I can get.

Gingerbread

I was experimenting with black icing (as you do) and the best I could manage was a charcoal grey.  The exact same shade of grey as my favourite suit.  So I said to myself:  why not make a gingerbread voodoo doll of me?

I swear to God I got a headache after Gaston ate it head first.

Pigeon

Have you heard of Don't Let The Pigeon Drive the Bus by Mo Willems?  It's one of a series of books about the misadventures of a pesky pigeon.  I made the above video to fuel Rémi's obsession with these books:  it's The Pigeon Wants a Puppy, the fourth in the series.

I love a good kids' book.  I bought Bus when Gaston was three because I figured if I loved it, then he would learn to love it.  And I was right.  Despite having practically no speech, he had memorised the dialogue and would recite bits of it using the same tone of voice I used when reading to him.

The best part is, when Gaston outgrew the book, Rémi became obsessed with it.  We bought Don't Let The Pigeon Stay Up Late, which Rémi loved.

Both boys were entertained by these YouTube videos:

We also had the videos on the iPod, which meant I could just hand Rémi the iPod and earphones and he could sit relatively still in restaurants, grocery store checkouts, doctor's waiting room...  If you can figure out the YouTube-to-iPod trick, then you might have a great tool to keep your kid occupied in public (it doesn't always work:  Gaston is immune).

When we flew to France in 2009, these books and iPod videos were a godsend.  They kept Rémi happy during long flights, restaurant meals and stays in unfamiliar places.  By the end, he was reciting the words over and over.  It may not seem like good language development, but for autistic kids, echoing stuff is often an important step towards actually saying stuff.

As an aside, the Puppy video was hardest to find, but we found this one.  I think it's the best of the three.  Don't you?

Blog Hop

Blog Hop:  a great way to find new blogs to love, and to get your own blog noticed by new people:

Preschool

Our experiences with kindergartens and day care centres had taught us that there was no way our kids could start their primary school education by going to regular, mainstream schools.

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First, there was the pool with the day care centre.  In Australia, pools are as common as Canada's skating rinks, America's baseball diamonds and Britain's, I don't know, coal mines:  there's one in every suburb, and they are a central pillar of the community.  This particular pool, the Brunswick pool, supplied swimming/gymming mothers with a short-term babysitting service for a surprisingly small fee.  The first time Anne tried it, Rémi was just a twinkle in my eye and Gaston was a toddler.  She left him, swam 1 km (that's 1 mile, for my American readers), and came back to find Gaston had been crying the entire time she was gone, clutching/sucking onto a blue star toy.  It took Gaston the rest of the day to get over the emotional trauma.

(As an aside, it turns out Gaston had an obsession with blue stars which would last for a couple more years.  As an aside to my aside, Rémi had a similar obsession with green rectangles which would extend to an obsession with Henry the Big Green Engine and other green engines from "Thomas".)

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Second, there were the only two French kindergartens in town.  Their mere existence is due to the fact that, in Melbourne, speaking French is seen to be very posh and Melbourne's richer suburbs are full of posh but not-too-bright parents who think their children will magically pick up a foreign language if they suffer through a couple of hours of foreign language kindergarten every week.  So Anne, who doesn't drive, would somehow drag the kids across the tracks several times a week to these posh suburb kindergartens, so that Gaston (and eventually Rémi) could attend a school where most of the goings on are in French.  Which was handy because, as if being autistic wasn't bad enough, our kids are exposed to both languages every day (mostly French).  Finding an educational environment for them in their mother tongue would surely benefit them.

Well, neither school coped particularly well with having an autistic kid in the group.  They insisted we pay someone out of pocket to assist our own kid in the school.  And because we could only afford unreliable uni students, Anne and the boys actually got turned away from the school on more than one occasion when the aide failed to show up.  Both schools made every effort to make our lives difficult, and every one (them and us) was relieved when my kids outgrew the schools.

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Third, there was The Neighbourhood House, a local community centre which provided a day care which could be best described as a kindergarten program:  it was a couple of hours each week.  Here was one of the best places for our boys:  the teacher had some experience working with autistic kids.  She engaged with Gaston, and did special things just for him.  For example, she had set aside a notebook for him, where she would draw or paste a summary of what he'd done that day or what song they sang in class.  Anne and I could then read the book to him at night, singing  the songs or reminding him what he'd done.  Gaston showed quite a bit of progress in that school.  And we weren't the only ones who enjoyed the benefits:  another autistic kid, Michael (whose mother would become Anne's best friend) was making full use of this great program as well.

But.

One of the parents complained that Michael had been aggressive with her child.  She made such a fuss about it, that The Neighbourhood House had to set a new rule that there was only one handicapped kid allowed in any particular class.  So Rémi had to wait to get in (he eventually did, and progressed as a result).  And so it goes:  if you do find a good place that copes well with autistic children, then eventually some other parents will cause difficulties.

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Finally, there was our local kindergarten.  When Gaston was about to turn five, we were able to send him to a proper, government-funded, local kindergarten.  Up until this point, we've been experimenting with various day care facilities and out-of-pocket programs.  There were three sessions a week, including one half-day session.  We felt obliged to pay someone to accompany him, but eventually the school decided that they should pay for our aide.  And they did!

This was the closest experience Gaston had to going to a regular school with regular kids.  Rémi would go the following year.  The aides were great:  they were the same people we had hired to come to our house and do some ABA therapy on Saturdays, so they had built up trusting relationships with the boys before their first day of kindy had even started.  As an added bonus, the kindergarten staff knew all about autism:  they had taught Michael the year before Gaston, there was another autistic kid in G's class, and I think they've dealt with other ones before.

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Nevertheless, at almost six years of age, Gaston could barely talk or sit still.  Rémi was worse:  he was compliant, but also so completely passive that it would take a miracle to make him break out of his shell.  As Gaston started getting close to school age, we had to overcome our fears of sending our kids to "special" school.  I'm not sure how, but we soon learned about Western Autistic School--perhaps through talking to Michael's mother--a school which caters for all the autistic kids in the western suburbs of Melbourne.

Autism is perfectly normal at this school.  The classes are small.  There are onsite speech and occupational therapists, and psychologists.  Some of the staff have been working with autistic kids for thirty years.  I could go on about how great this school is, but I think it would be best to leave it as the topic of another blog post.  (note:  I did write that post in February 2011.  The link is here:  http://lebelinoz.blogspot.com/2011/02/western-autistic-school.html)

Aware

Has anyone else noticed that their autistic kids were particularly aware of stuff when they were just tiny babies?

We've just met a friend's newborn baby.  Ever since then, Anne's been spewing forth stories of how much more aware Gaston and Rémi were at the same age.  She has stories of comments from strangers, of Rémi staring at a painting while nursing, of Gaston completely flipping out when she left him at a day care centre at a very young age.  She keeps saying "G & R were so much more aware of the world around them than" the baby we just met.

Little help?  Could it be that autistic kids have a more heightened awareness of the world around them than regular people?  In fact, couldn't that be part of the definition of autism?

lebelintaz – Cataract Gorge

Back in September, the lebelinoz family went to Tasmania for the annual family holiday.  We had a lot of fun, and the four of us learned a lot--about ourselves and about each other.  I committed myself to writing a blog about the trip.  I kept meticulous notes every day of the trip, then spent days rewriting the notes into what I thought was a readable blog.

The blog, it turned out, wasn't very readable.  It was ten times longer than any other blog I've read since, plus it had photos and short videos.  At one point, I raged for three pages about one crappy place where we stayed, and at another point I raved for paragraphs about a great breakfast buffet at Cradle Mountain.  It was all dreadfully boring travel blog stuff.  Plus it got too personal at times.

Still, there were a couple of gems to be found in my long, meandering journal.  I've already published an excerpt about our day in Sheffield.  Here is an excerpt from our second day in Launceston, when we visited Cataract Gorge.  Would appreciate some feedback because this one isn't usual blog material...or is it?

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I was awake before the sun.  I couldn't help but notice a ghostly yelping.  It took me a while to work out that it was probably some kind of bird.  The other birds soon joined in.  This is a typical wake-up in the Australian country.  It was just a bit more ghostly this time.  And we were in a city, not in the country.

This morning, we went to Cataract Gorge.  Ages ago, someone built a park around the base of a gorge, including manicured lawns and a swimming pool.  Anne reckons it looks 1960s.  I reckon it looks 1860s.  A chair-lift (like for skiing, except there's no skiing here) takes you to the top of the mountain.  You can also easily walk to the top via a suspension bridge, but we wanted the boys to experience the chair-lift.  We had talked to Gaston about "the chair which goes up" earlier, so he was excited about it.  Up top, we saw some little black wallabies and four or five peacocks.  Keep in mind that this park is in the middle of a town.

From there, we took an easy walk to King Bridge, which is part of one of Launceston's main streets.  It seemed logical to cross the bridge and walk back on the other side of the gorge.  This second walk is called Zig Zag Walk.  Half an hour of hard walking/climbing followed.  At the end, we saw a sign:  "Warning:  Hikers Only".  I wish there'd been a sign at the other end.  Anyway, we were back at the manicured lawns for a picnic and a play in a playground.

At the main park, there was some sort of diagonal elevator which takes you from the playground to a café to the car park.  Gaston was fascinated, of course, so we took it several times.  During one ride, two teenaged girls were on board with just Gaston and me.  The girls were freaking out about the height and Gaston pressed some sort of emergency stop button.  We were stuck only for a minute, and I admonished him calmly, but you can't tell Gaston not to do something.  He screeched.  Twice.  And again later after we got off the lift.  Then he ran to the playground to find Rémi and give him a smack.

This is the routine:  if we tell Gaston not to do something,

1) he screams,

2) he runs,

3) he either hits Rémi or his mom, or he slams a door.

Nothing can break that routine.  I've tried hitting him, throwing his favourite toys into the trash, screaming at him, ignoring him, everything.  Nothing breaks the cycle, and I will pay you cash money if you can tell me how to fix it.  But that's how it goes.  When we send him to another room for "time out", wait, and let him come back, he immediately does the bad thing again (usually hitting Rémi or his mother).

On the way back down on the chair lift, I tried to scare Anne (who was on a different chair) by letting out a yelp.  Some peacocks answered my yell with a ghostly yelp.  That's when I worked out what those strange bird calls were at 5:30 am:  peacocks.

In the parking lot, an old couple came over to our car and we chatted about our respective trips around Tasmania.  They were from Stawell (rhymes with "drawl") in country Victoria.  They recognised us from the boat (The Spirit of Tasmania, a ferry which takes travellers from Melbourne to Tasmania).  They were doing a similar trip as ours in reverse:  they were about to drive clockwise around Tasmania and we were about to drive counter clockwise.

Anne blurted out that the boys are autistic.  The woman revealed that they have a deaf-dumb-blind daughter who was about Anne's age, and the daughter lives in a home for disabled people.  Anne opened up more about our difficulties with the boys, and she almost cried while talking.  The woman gave her a kiss and a hug when we parted, and I shook the man's hand.  I think they came over because they had sensed that something wasn't quite right with our boys.  Our two families each dealt with different handicaps altogether, but we were somehow drawn to each other and we had an immediate and far too brief connection.

Book reviews

I thought I'd give reviews of the novels and memoirs related to autism which I've read.  I hope this blog entry will help you find the diamonds among the coals the next time you're looking for a book which might help deepen your understanding of autism.

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Daniel isn't talking by Marti Leimbach (2006) - Fiction

This is a novel written from the point of view of Melanie.  She has a three-year-old named Daniel who, as the title suggests, doesn't talk.  As the story unfolds, Melanie learns that Daniel is autistic.  Through intense play therapy and a gluten-free, dairy-free diet, Daniel learns to speak, follow instructions and cope with difficult situations.  The book ends a year after it begins, with Daniel's development being advanced enough for him to go into a mainstream school.

While I thought Daniel in the early part of the book was very realistic (having similarities to my boys), his progress and eventual cure was not.  As one Amazon customer review puts it:  at one stage in the book, Daniel's speech is more advanced than that of most 3-year-olds, and Melanie is still fretting about him being behind.

I didn't like the way Melanie was obsessed with not sending Daniel to special school.  The special schools are her worst nightmare. Furthermore, all of the medical professionals in the book are made out to be bumbling quacks.

I liked the way the father in the story is portrayed as a pompous jerk.  Much of the book revolves around the breakdown of Melanie's marriage as a result of the autism diagnosis and the ensuing paternal denial.  I saw a bit of myself in this man, especially when I read my wife's one and only blog entry.  Who knows?  Maybe having read this book is part of what got my own marriage through these difficult times!

Why I read it:  One of my wife's friends is a teacher and she leant us a bunch of books about the education of special needs kids.  The book was in the pile for some reason (she must have read it and thought it might help).  Reading a novel seemed easier than reading a bunch of textbooks so, due to laziness, I read it first (even though the book is pretty girly).

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Louder than Words: A mother's journey in healing autism by Jenny McCarthy (2007) - Memoir

It is a memoir of the diagnosis of Ms McCarthy's son, Evan, with autism. The book suggests (but never explicitly states) that Evan's autism was caused by the measles-mumps-rubella (MMR) vaccine.  A foreword, written by a paediatrician, also suggests (but never explicitly states) that his own son's autism was caused by the vaccine. The memoir also suggests that autism can be cured using the correct diet and behavioural therapies.  The book ends on a happy note:  Evan is quickly cured of autism.

The book is very popular because it fills the reader with hope that something can be done to make autism go away.  Even though it's all bullshit.

Don't let this be the only book you've ever read:  arm yourself with information by reading lots of other stuff, too (and not just the novels and memoirs).  There is no magic cure for autism, and there are no easy answers to what causes autism.  This book will tell you otherwise:  don't believe it. 

Why I read it:  My mother sent me a copy of this book.  Now, whenever somebody brings the book up in conversation, I get all wound up and make sure everyone within earshot knows exactly what I think of it (in case you need a bigger hint, check out my post Vaccination).

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The curious incident of the dog in the night by Mark Haddon (2003) - Fiction

As autism literature evolves, I believe we'll find a trend from autism cures to autism acceptance.  This book is a fine example of autism acceptance:  life from the point of view of an autistic person.  I can't judge whether this is an accurate portrayal of a teenager with Asperger's, but it's pretty convincing to me.

I have a couple of friends at work who are fascinated with my kids' autism.  In response to their questions, I leant them this book and pointed out a couple of the bits which I see in common with my boys.  I think it deepened their understanding of my life and what my kids are like.

This is a great book, and a quick read.

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A friend like Henry  by Nuala Gardner (2007) - Memoir

Don't be put off by the subtitle:  "The Remarkable True Story of an Autistic Boy and the Dog That Unlocked His World".  The book is marketed as sappy trash, but it's actually quite good.  Nuala tells her story from the birth of her son Dale (around 1990) through to his late adolescence (2007).  The book is very much about Nuala, whose life revolves around Dale, even when life throws her such curve balls as the death of a parent or dealing with her own infertility.

The main thesis of the book is that hard work and perseverance made it possible for Dale to come out of his shell, and possibly set himself up for a good, happy life.  The story pre-dates all of the 21st century quackery around autism cures.  There were no easy answers in this book:  the dog didn't cure autism.  Henry the dog was just another tool which Nuala and company used to help Dale learn about the world around him.  Henry only comes into the story about halfway through the book!

Nuala Gardner does mention Andrew Wakefield's so-called link between combining vaccines and autism, and how she separated the vaccines just to be safe.  I'll forgive her because the book was written before the urban myth of autism-vaccination links was completely debunked.  But a warning to all would-be authors out there:  mentioning these urban myths is playing with fire, even if you only lightly mention them in passing (like Mrs Gardner did).  Many parents of autistic kids out there will only read one or two books, and they might adhere to your book like it’s the Bible.  And Lord knows the Bible gets misinterpreted all the time.

Why I read it:  Another friend of my wife's.  This friend read the book and loved it so much she thrust it upon us.  I read it immediately.  I'm still trying to get the wife to read it, but it just makes her cry because it's too familiar.

"Friend like Henry" is my favourite of the books I've read so far.  It inspired me to work harder with my boys, and I feel as though the extra work is paying off.  I highly recommend this book to anyone who has autistic kids and to anyone who works with them.

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Other books worth mentioning:

Room:  A Novel by Emma Donoghue (2010) - Fiction:  Nothing to do with autism, but it does give an interesting perspective of the world:  through the eyes of a five year old who doesn't get out much.  I can't say more without giving anything away.  Great book, though.

House Rules by Jodi Picoult (2010) - Fiction:  It's a novel about a murder investigation which centres around an Asperger's kid, and the kid is obsessed with CSI style forensic investigation.  Some of the book is written from his point of view.  Has anyone read this one?  It's sitting on my bookshelf and I haven't got around to reading it.  Should I bother?

I would love to hear if there are any other books out there which are worth reading, or if there is any more celebrity-endorsed trash which will probably pop up in conversations.

Go to your room…

 
...and don't come out until I've finished laughing.

The first time Gaston did this, we thought it was hilarious. It was so unexpected: we thought he had no concept of gifts. He had never gotten excited about gifts at any birthdays or Christmases at this stage. He destroyed an ornament, but it demonstrated an understanding we never thought he had.

The second time Gaston did this, it was annoying. You'd think he'd have remembered his experience from the previous year.

The third time Gaston tried to do this, I had caught him just in time. What do you think was going through his head? "Oh boy, another tiny styrofoam cube to add to my collection. In another nine years, I'll have a whole tray of pretend ice cubes."

Mousetrap

Today, Rémi figured out how to use the mouse. 

His brother has been computer literate since he was way younger than Rémi is now.  When Gaston was three or four, his ABA therapist would come to our house armed with a laptop loaded with games and videos which appealed to young autistic boys.  He had some great ideas on how to teach Gaston how to use a computer, including bringing in some special, easy-to-use mice.  After a couple of months, Gaston became adept at starting his own videos and playing a couple of games.  I introduced him to a painting tool on the family PC, and I downloaded a tool for playing with virtual Lego (here: http://ldd.lego.com/).  After less than a year of playing with both real and virtual Lego and of drawing both real and virtual pictures, Gaston was a 5-year-old boy who could double-click, scroll, select options from menus, minimise windows, type words…  Pretty much anything one would need to do to get around on a computer.

Today, Gaston is seven years old.  His only limits on the computer are his limits in real life.  As his real-life drawing and Lego-building improve, so do his skills in the virtual medium.  Now that he can write, he can google stuff.  He uses YouTube to feed his obsession with trains, similar to the way he uses paper and pencils to feed his obsession with trains.  I feel as though the home computer is complementing his education.

Rémi, however, has not shown as keen an interest in using the computer.  The same therapist who successfully got Gaston to use the mouse failed to reproduce this feat with Rémi even after some years.  Now, Rémi is about to turn six and he still takes us by the hand for us to start videos for him.  Or points at the screen and says "that one".  Or he's completely at the mercy of his older brother, who might decide to pause a video halfway to draw the featured train.

I've occasionally tried to teach him how to point and click, but the best I get is a click.  Mice are so touchy that I end up breaking my back trying to get him to click on the right spot, while Rémi watches the screen ignoring the attempted lesson.

We had a breakthrough recently, when I caught him trying to place his hand on the mouse in the correct way.  Rémi is obsessed with his hands (he can watch his hands for ages!), so the hand placement was more about seeing how the mouse would fit--a bit like a fashion accessory.  But I'll take what I can get.  Every time he asked for something, I would make him point and click by placing his hand on the mouse and putting my hand over his.

Today, I found this video (if you can't see it, it's the Gracie Films and Fox logos which they show at the end of every episode of The Simpsons and other sitcoms):

Rémi loves it and it's hardly ten seconds long.  This forced him to click on his own and to figure out how to drag the cursor.  Within twenty minutes, he was restarting the video on his own, even if the cursor got moved away from the video icon and he had to drag it back without any help from me.

How did I know that this video would finally motivate him enough to use the mouse?  I only figured it out today.

In one of Anne's girly magazines, there is an ad for The Simpsons season 27 coming out on DVD just in time for Christmas.  The set (and the ad) has a picture of Ralph Wiggum on it, and not much else.  Rémi has been staring at it non-stop for days.  He carries the magazine around the house, staring at that half-page ad while making some sort of strange, train-like noise.  I found it strange because he's never been particularly interested in The Simpsons, and this was a particularly uninteresting sample.  Today, I figured out he was actually interested in the tiny little Gracie Films and Fox logos in the corner.  They're really tiny:  the Fox logo was smaller than his smallest fingernail!  And the "train-like noise" was actually  the orchestra music we always hear when we see the Fox logo at the end of a show.  Rémi has been interested in DVD cases for as long as I can remember.  I knew he had a thing for the DreamWorks logo;  it would seem his interest in studio logos has expanded.   The interest is so strong, in fact, that I managed to use it as a carrot to get him to learn.

So, as of this morning, Rémi can use the mouse to kick off the above video.  This is a huge breakthrough in the lebelinoz household, one that's been a long time coming.  The list of things which Rémi can't do but Gaston could do at the same age seemed to be growing, and little victories like this fill me with hope for my little  guy.

Twitter

Follow me on Twitter.  Whatever that means.  @lebelinoz

Two is not worse than one

You'd think having two autistic kids is twice as bad as having one.  I disagree. 

Don't get me wrong.  It would have been nice to have one regular kid.  I think either Gaston (age 7) or Rémi (age 5) would learn more social skills if there was another non-autistic role model in the house.   At our age, Anne and I are too scared to have a third child--mainly out of fear we'd be raising three autistic kids instead of the two we already have.  Anyway, I'm not sure having a regular kid in the house would enhance their happiness (even if it would have greatly enhanced mine).

Gaston is Rémi's hero.  The younger one loves that the older one can name all the train stations and can ride a scooter.  No other kid could possibly look up to Gaston like that.  No normal kid would care about train stations.  And no regular five-year-old could possibly look up to Gaston's athletic skills, which are probably inferior to those of most five-year-olds.  Regular boys look at Gaston with either curiosity or disdain.  In our house, he's the cool big brother.

Gaston's speech is infantile, so Rémi can follow it and has started mimicking it.  Most seven-year-olds would prattle on about Ben 10 or footy (=Aussie Rules football) or whatever it is seven-year-olds are into these days, and I'm sure Rémi wouldn't follow a word of it.  When Gaston says little more than "Gaston's turn… Rémi's turn…", not only is Rémi fascinated, but he's reminded of all the turn-taking lessons that are being drilled into him at school.  He repeats the phrases, and he has learned to use them in context.

If Gaston had been normal, Rémi would be dead weight to him and Rémi would understand nothing which Gaston says and does.  If Rémi were normal, he'd be jealous that his autistic brother gets all the attention from Mom and Dad, and he'd be embarrassed when Gaston acts up in public.  We know two families who have one normal and one autistic kid (all are boys).  Without knowing all the details, it seems to me that every one of the kids suffers for having a brother of a different neurotype.

The future is grim for our boys.  Most autistic adults live with their parents all their lives, and holding a regular job might be beyond them:  I don't see why things would be any different for Gaston or Rémi or both.  But since they have each other, I am filled with hope that they'll always be able to help each other understand the big scary world outside.

Passport photos

It's time to take your passport photos, kids.

Okay, cute, but you're not allowed to smile for your passport. No teeth allowed. 

I said mouth closed. You can't show your teeth on Australian passports. 

Mouth closed! 

CLOSED! 

Okay, close enough. Gaston has been done.

Now let's do Rémi.

Honey, you need to look into the camera. And close your mouth. 

Better, but too much light. And your mouth is still open. 

That would be my knee. Can you hold still, please? 

Rémi, forget the television. Look at me. 

Look at me! Look at me! And close your mouth! 

CLOOOOSED!!! 

Okay Mom, you're not helping. Maybe we should bribe him? Give him some chips. 

YUCK! NO MORE CHIPS! NO MORE CHIPS! 

Hands in the way. No good. 

Close enough. If this isn't acceptable, then we're going to France without you.

Tantrum Walking

For a while, we could never walk past our local shopping strip with Rémi. There's something about that string of shops that just sets him off. He would collapse on the ground, crying, every time.

This is typical of autistic kids. The psychologists at Western Autistic School, where the kids go to school, have talked about it. There's a routine that develops in the kids' heads, and they get upset when the routine is broken. Maybe we went into one of the shops one day and Rémi now wants to go into it every day. Or maybe it's the train boom gates at the bottom of the hill: he either gets upset that they're not on now, or he's upset that they are on and we're not taking the train. Who knows what's going on in his little head. At the time, the boy could barely ask for a cup of water whenever he was practically dying of thirst. He certainly wasn't about to explain to us why a walk past our neighbourhood fruit shop, milk bar and newsagent caused an insurmountable rage which could last over an hour.

With Rémi, this was typical behaviour. He loved trains, but he would scream and cry as though he was being tortured whenever we went on a train. He loved the school bus (an Australian rarity), but he would take an hour to recover from the daily post-school tantrum. Anne reckons it's because the bus has an automatic door which opens and closes like the doors of an elevator, and after his first or second day of school the driver opened/closed it twice to make Rémi happy, and he's been pining for the double open/close ever since.

The problem hit its peak during the first break from Rémi's first year of school. In Australia, the summer school holiday is only one month long and kids get three additional 2-week breaks throughout the year. Since I only get four weeks of holiday each year, the kids get more "staycations" than proper holidays. During the first such break, Anne found she was dealing with these tantrums on a daily basis. She couldn't stay home all day, but every outing lead to a tantrum.

Once, Gaston ran away while Anne was dealing with the crying, screaming wreck. Fortunately, instead of running across the busy street, Gaston had run into a hair salon and plopped himself down in one of the big hairdressing chairs with his big sticky ice cream. The hairdresser, a middle-aged gay man, tried to talk to Gaston. I think he must have seen Anne dealing with the situation just outside and thought he could help by keeping Gaston inside. It did help. I can just imagine the scene and I wish I'd been there to witness it: a grown man who has probably not spoken to a child in years, trying to talk to a non-verbal six-year-old who had walked right into his workplace. Hilarious, except for the drama unfolding outside.

When I'm with Rémi, I have a particular way of holding his hand which forces him to stand. It doesn't involve just pulling him up by the hand: that would break my back and probably pull his shoulder out of his socket. My method involves getting my right arm under his left armpit and using leverage to hoist him up by the hand and arm. It was slightly inspired by all my years of jiu jitsu (decades ago), but mostly inspired by the psychologists at Rémi's school highly recommending this "hand-holding" method. He'll still cry and scream, but he's forced to stand and to go where I go.

For a while, I used this technique to go on what I called "tantrum walks". Rémi and I would go for walks up and down the shopping strip, repeatedly, just to practise walking during his tantrums. With time, he would learn to cry and not collapse on the ground. Then I would step things up a notch by stopping or turning around while walking. He hates directional changes or changes in pace: the tantrum would escalate, but he'd have to walk or stand with me. As weeks passed, the tantrums subsided. With more time, so did the crying. We could eventually walk past the shops without a drama.

One day, I came home from work extra early (thanks boss, if you're reading this) to see what could be done about the daily after-school drama. To stop the bus tantrum, I made him stay on the footpath (=sidewalk) while the bus closed its door--his habit was to run up on our veranda and start crying as soon as the bus left. Breaking the routine by keeping him on the footpath seemed to hold off the crying for a little bit, then we went for a walk around the block when the crying eventually started. This seemed to hold off the big meltdown on that particular afternoon. Anne continued to break the bus-veranda-crying cycle by making him stay on the footpath over the days that followed. After a few weeks, the meltdowns stopped altogether.

With time, the anger dissipated. Over the months that followed, trips to the local grocery store stopped being dramatic and Rémi learned to enjoy train rides again. Tantrums got pushed to the end of the day, when he would flip out most nights around bedtime. With time, the nightly routine cheered up, too.

Anne has learned that she can't handle both boys without sacrificing her own health, little by little. We have signed up for something called "respite care". Normally, this would mean a government-funded babysitter. But Anne uses the service as an aide, an educational tool. With a helper, she can continue taking the boys on outings during the school holidays when I'm at work. Their last stay-at-home school holiday was relatively drama-free.

Tantrums seem like a thing of the past now: he has cheered up completely (provided we stay away from a couple of parks which he hates). I don't know if it's because of the work we had done, because of the work he does at school, or if he had merely gone through a difficult phase and he would have snapped out of it on his own without any intervention. All I know is that we can take the train, go to some parks and go to our local shops. And Rémi is a much happier boy than he was a year ago.

Game Day

 

A couple of days ago, I blogged a promise to blow the dust off all the old board games in Rémi's room and make yet another attempt at teaching the boys to play quiet, turn-taking games. We've tried before, but they never seemed to understand, and the last time we tried (a year ago), it all seemed too far beyond Rémi's abilities. Come to think of it, Gaston never quite got the hang of these games either.

Cleaning up Rémi's room was quite a trip down memory lane. We found all sorts of baby toys which he'd outgrown, way too many electronic toys which have stopped working ages ago, some games which he'd never been interested in, some toys with so many little pieces that they never seemed worth the trouble of keeping. We filled two big garbage bags with toys which could only go into the bin, and four bags with toys which some needy children will surely enjoy more than we ever could.

The biggest memory trip was finding all the plastic food and toy kitchen paraphernalia which we'd bought years ago, shortly after the kids were diagnosed with autism, on the advice of speech therapists and psychologists. We were supposed to use these things to teach the boys imaginative play. They were never interested in pretend play, despite our efforts. The supposedly educational toys didn't teach them a word about cooking or eating or household chores: in hindsight, they were a waste of space, money and time.

Gaston eventually learned all the kitchen vocabulary anyway, because he loves it when I bake, he loves to explore the fruit & veg section of the grocery store and he loves certain daily routines like breakfast (the phrase "Daddy drinks coffee and Gaston drinks milk" is one he has repeated many times over the years). Rémi probably won't learn any of the kitchen vocab for years because he's one of those kids who isn't interested in food. He's all over vacuuming, though: he loves the vacuum cleaner.

All this went through my head when the dreaded hour of "Game Day" came and I felt obliged to break out Buckaroo and Don't Drop the Acorn (which is essentially Ker plunk). I seemed to remember that nobody likes these games, especially not me because I seem to spend more time picking up plastic acorns and tiny plastic camping gear than actually playing the game.

Sensing my dread, my wife Anne (bless her) said "Why don't you just play Wii?" As usual, she was right. We played Wii Bowling like we've done a hundred times before. They completely understand the concept of turn-taking in this game. I heard beautiful phrases such as "Rémi's turn" and "Gaston's turn"--in English, which means they must have picked it up at school and were now generalising it. They got more excited about getting a spare or a strike than I ever do. Gaston bowled better than I've ever seen him do, and Rémi tried doing it on his own for the first time ever.

"Game Day" was a complete success, once I let go of some pre-conceived notions of what a Game Day ought to be, and put the cards and board games back on the shelf.

Sheffield

Gaston has taken over my camera.  It was cute at first, but it's reached the point where I can't touch my Olympus μ 820 unless it's to take a photo of him.

The first time I suspected this could be an interesting development was when we were on holiday in Tasmania.  We stopped at a cute little town called Sheffield, famous (among Tasmanians) for its murals.  When I told G to take photos of them, he did:

He  took photos of other interesting things, too:

And he proceeded to take photos of all the park benches and other things around the place:

If anyone can tell me what these green Daleks are, I'd be curious to hear it.  They're all over Australia and I never noticed them until Gaston took a photo of one:

I told myself I'd give him more freedom with the camera, to get an autistic child's perspective on our holiday.  He would mostly take photos of the inside of the car during the rest of this holiday

Darn it, I'm putting him through the same childhood I had suffered through!

Sometimes he surprised me with clever series of photos.  Here's one he took at the Melbourne Zoo weeks later:

Here's one of his own drawings, a kind of step-by-step guide on how to draw a train:

(it goes on...  best to stop here)

If you're still reading, I won't bore you with the many many MANY photos and videos of  the Lego train set.  Or the boys' favourite toy bus.  Or the names of all the train announcements, which he's copied off of YouTube and written on individual sheets of paper.  Oh, what the heck, here are a couple:

I could go on.  Pictures of Legos, of popcorn, a how-to guide on how to open the front door (not that he needs it for himself), photos he took of himself:

The above photo always brings a tear to my eye.  Oh, how I miss my beloved Olympus μ 820!