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!