I'm married. I live in Melbourne. I have two young sons. They're both autistic.
My wife's name is Anne-Marie (or Anne). My kids' names are Gaston (age 7) and Rémi (age 5). We live a long, long way from our extended families (I'm Canadian and Anne is French). So it's just the four of us.
As with most autistic kids, outings with my kids are frustrating, embarrassing and sometimes dangerous. They can run away at any given time (even if we're near a busy road or in a crowded store), they have massive tantrums, they scream, they cry, they don't answer when called, they have no fear. They've mastered non-violent protest so well that we've nicknamed Gaston "Ghandi". Other people look at us with either pity or contempt.
It is tempting to stay at home and do nothing. We have friends who also have autistic kids, and we struggle to coax them out of their homes. But we persevere with our own kids: we've never shied away from taking the kids out in public. They'll never learn otherwise, right?
I still take them grocery shopping even though other parents stare at me (or worse: stare away from me). Anne, who is a tiny waif with a bad back, takes them to the zoo, the museum, Melbourne Central (our local shopping mall), the pool, all the local parks... and she doesn't even drive! She takes public transport!
We try to do a fun outing on most weekends. Such outings can easily be 60% good and 40% nightmarish. Anne and I believe the good outweighs the bad. The kids seem to enjoy the good parts, and they recover from the bad parts a lot more quickly than Anne and me.
On Sunday, 8 August 2010, there was a model railroad exhibition at the Braybrook sports stadium. This was a just a short drive from our home, so we took the boys there in the afternoon. The boys love trains, so we were hoping this would be a better-than-usual outing (though we feared the usual tears and protests when the time would come to leave).
It turned out to be one of our best outings ever.
First, a bit of background. To say “the boys love trains” is a bit of an understatement. They adore trains. They live and breathe trains.
Rémi can spend hours moving his toy trains back and forth, or looking at train books, while making train noises. I don’t mean saying “choo-choo” like a regular kid. Rémi is slowly mastering the art of imitating train horns exactly. You’ll hear him if you listen to some of this (from 1.5 years ago when we made a train-shaped cake for his fourth birthday):
Gaston spends most of his waking hours either drawing trains, writing the names of Melbourne’s train stations or building elaborate train stations out of Lego. Some samples:
The Braybrook Sport Stadium is a grungy indoor basketball court in the middle of a suburban industrial park. On this particular day, it was filled with tables covered in model trains. About a dozen hobby shops were marketing their wares by showing off a display of moving trains, realistic miniature landscapes and several metres of track. A train hobbyist can learn about the latest innovations in making tiny little trees, buy a replica of a locomotive (I saw some selling for five hundred dollars) or stock up on miniature railroad tracks.
Anne and I were expecting to see a few autistic people there apart from our own. As it turns out, more than half of the people there were probably autistic. See how Rémi jumps up and down in some of the video? That's a typical trait of autism. We saw two other kids doing it that day. There was the highest proportion of sweat pants per capita then I've ever seen outside a gym. We didn't help by contributing two (the kids', not mine).
Some of the men with displays got really grumpy when Gaston or Rémi touched things or went behind the display. Anyone who knew anything about kids would have been a bit more patient, and only one guy (out of a dozen!) was somewhat understanding. The grumpiness made me laugh: it's not hard to imagine our boys being the same when they're older. They really hate it when I touch their stuff.
We were there for two hours. There were only a dozen displays, so it's not like we had a lot to look at. The boys just liked watching the same ones over and over again. There were two or three "sweet spots" where Rémi liked to stand and watch trains come at him.
At one stage, we were worried that Gaston might pee his pants. He seemed to need to go, but when we spoke to him about it he'd just scream "No!" and run away. When we were a bit more forceful, "Ghandi" collapsed on the ground. It's as though he thought leaving the gym meant the end of the railroad show, and nothing we can say or do would change his mind. In the end, we were worried for nothing, though.
Anne and I laughed a lot. We laughed that the boys' naughtiness didn't seem so out of place for a change. We laughed at the autistic grown men who were obsessed with trains (and the non-autistic hobby shop men who probably pocketed most of their money). My favourite part was watching Rémi push a grown man out of his favourite train-watching spot (I wish I'd caught that on video but I hadn't).
The best part was departure time. As I'd mentioned, we were expecting tears and tantrums. We thought Gaston's failed trip to the toilets was an indication of how the outing might end. But after two hours, even our boys were happy to call it a day. As though they'd had enough.
It's encouraging to know they can have enough of trains. The way Gaston draws and builds the same trains over and over again makes me think he'll never snap out of this obsession. Maybe he still can.
My wife's name is Anne-Marie (or Anne). My kids' names are Gaston (age 7) and Rémi (age 5). We live a long, long way from our extended families (I'm Canadian and Anne is French). So it's just the four of us.
As with most autistic kids, outings with my kids are frustrating, embarrassing and sometimes dangerous. They can run away at any given time (even if we're near a busy road or in a crowded store), they have massive tantrums, they scream, they cry, they don't answer when called, they have no fear. They've mastered non-violent protest so well that we've nicknamed Gaston "Ghandi". Other people look at us with either pity or contempt.
It is tempting to stay at home and do nothing. We have friends who also have autistic kids, and we struggle to coax them out of their homes. But we persevere with our own kids: we've never shied away from taking the kids out in public. They'll never learn otherwise, right?
I still take them grocery shopping even though other parents stare at me (or worse: stare away from me). Anne, who is a tiny waif with a bad back, takes them to the zoo, the museum, Melbourne Central (our local shopping mall), the pool, all the local parks... and she doesn't even drive! She takes public transport!
We try to do a fun outing on most weekends. Such outings can easily be 60% good and 40% nightmarish. Anne and I believe the good outweighs the bad. The kids seem to enjoy the good parts, and they recover from the bad parts a lot more quickly than Anne and me.
On Sunday, 8 August 2010, there was a model railroad exhibition at the Braybrook sports stadium. This was a just a short drive from our home, so we took the boys there in the afternoon. The boys love trains, so we were hoping this would be a better-than-usual outing (though we feared the usual tears and protests when the time would come to leave).
It turned out to be one of our best outings ever.
First, a bit of background. To say “the boys love trains” is a bit of an understatement. They adore trains. They live and breathe trains.
Rémi can spend hours moving his toy trains back and forth, or looking at train books, while making train noises. I don’t mean saying “choo-choo” like a regular kid. Rémi is slowly mastering the art of imitating train horns exactly. You’ll hear him if you listen to some of this (from 1.5 years ago when we made a train-shaped cake for his fourth birthday):
Gaston spends most of his waking hours either drawing trains, writing the names of Melbourne’s train stations or building elaborate train stations out of Lego. Some samples:
This is Gaston's version of Moonee Ponds station, in Lego |
And this is Essendon station |
One of many of Gaston's train drawings |
The Braybrook Sport Stadium is a grungy indoor basketball court in the middle of a suburban industrial park. On this particular day, it was filled with tables covered in model trains. About a dozen hobby shops were marketing their wares by showing off a display of moving trains, realistic miniature landscapes and several metres of track. A train hobbyist can learn about the latest innovations in making tiny little trees, buy a replica of a locomotive (I saw some selling for five hundred dollars) or stock up on miniature railroad tracks.
Anne and I were expecting to see a few autistic people there apart from our own. As it turns out, more than half of the people there were probably autistic. See how Rémi jumps up and down in some of the video? That's a typical trait of autism. We saw two other kids doing it that day. There was the highest proportion of sweat pants per capita then I've ever seen outside a gym. We didn't help by contributing two (the kids', not mine).
Some of the men with displays got really grumpy when Gaston or Rémi touched things or went behind the display. Anyone who knew anything about kids would have been a bit more patient, and only one guy (out of a dozen!) was somewhat understanding. The grumpiness made me laugh: it's not hard to imagine our boys being the same when they're older. They really hate it when I touch their stuff.
We were there for two hours. There were only a dozen displays, so it's not like we had a lot to look at. The boys just liked watching the same ones over and over again. There were two or three "sweet spots" where Rémi liked to stand and watch trains come at him.
At one stage, we were worried that Gaston might pee his pants. He seemed to need to go, but when we spoke to him about it he'd just scream "No!" and run away. When we were a bit more forceful, "Ghandi" collapsed on the ground. It's as though he thought leaving the gym meant the end of the railroad show, and nothing we can say or do would change his mind. In the end, we were worried for nothing, though.
Anne and I laughed a lot. We laughed that the boys' naughtiness didn't seem so out of place for a change. We laughed at the autistic grown men who were obsessed with trains (and the non-autistic hobby shop men who probably pocketed most of their money). My favourite part was watching Rémi push a grown man out of his favourite train-watching spot (I wish I'd caught that on video but I hadn't).
The best part was departure time. As I'd mentioned, we were expecting tears and tantrums. We thought Gaston's failed trip to the toilets was an indication of how the outing might end. But after two hours, even our boys were happy to call it a day. As though they'd had enough.
It's encouraging to know they can have enough of trains. The way Gaston draws and builds the same trains over and over again makes me think he'll never snap out of this obsession. Maybe he still can.
Or maybe he'll turn into one of those hobby shop guys who sells five hundred dollar miniature engines to autistic grown men.
You have the talent for true blue blogger....keep it up I will continue to read....I LOVE IT!!
ReplyDeleteAutism and trains it is like a beautiful relationship and so fasinating to watch. I think there is many things you can teach people about autism but one of the most learned and interesting things is the facination with trains.
The other day I read a another blog about Autism. I will try to do it justice by writing it like I read it :
Autism is not a disablity, it another kind of ability. An autistic child/adult doesn't lie nor will they ever pass judgement. To me abilities we should all try harder to posses.
The other characterist that I love is you will NEVER find an ugly autistic child! They are absolutely beautiful. Of course parents are bias however, go to a school that has a number of autistic children and you will only shake your head and smile...they are absolutely beautiful!
Oh, again please come see me and stay a while. We literally have a trains that run through my back yard your all day long....on top of that, walking distance we have a real life train yard and train houses...you name it. Perhaps one of these days I will take a video tape it and narrate it using the boys names.
Louise
I like having Remi and Gaston over. It's never a problem.
ReplyDeleteThank you for writing the blog. It helps me to get to know them (my grandchildren)better as I live on the other side of the world. I will keep reading and passing it on to other family member.
ReplyDeleteI can't wait to see the boys again. It's been a long time, but we loved the days we spent with you on the beach. We'll be back in feb. and hope to cath up!!!
ReplyDeleteAng
I am new to your blog - and I love it. I am in Canada, and I was told about your blog by your cousin, Sidney Days wife, Shannon.
ReplyDeleteI also write a blog - Owencarlsjourneythroughautism.blogpot.com, and its therapy for me.. I love it.
Our son was diagnosed this past Feb, and it has taken our life for a crazy ride.. and like you, we have another bo (9 months) and watch him like a hawk for signs.. and then we have a 2 yr old daughter, who (thankfully) is typical.
Would love to hear from you!
Vanessa
loved this story
ReplyDeleteJust discovered your blog through Blog Gems and really enjoying it
I got very nostalgic looking at the photos of Moonee Ponds and Essendon!! I love the "approaching Melbourne Central" placards in your later entry as well!
ReplyDeleteThis entry reminded me of when I was taking some kids on an overnight trip to Bendigo to see the Talking Tram. I got to sleep at 3 or 4am as the dorm had a fascinating light switch which set off one of the kids and there was nothing I could do, try as I might!
Finally, I fell asleep but there was one child, (actually he was 14 or 15) who was so easy to take on trips as he was quite obedient and happy, albeit non-verbal, who shook me up so my head hit the pillow and, sounding like a broken man, I whimpered, "Murat, what?"
He gestured pulling the bell on a tram. All I could manage was a laugh and said, "In the morning," to which he went to bed and fell asleep! It was so lovely to see he was so excited and just had to tell me!
I hope things go as well at the Braybrook Show in 2011!