Facebook I *Like* but not in the same way millions of other Facebook users do.

 

OK, so I’m middle-aged, and I use social media. WordPress – obviously – Twitter, and Facebook. Sometimes I find myself defending the use of this media to friends and family who are younger than me. What’s that about?

Last night, on the ABC here in Oz, “Mark Zuckerberg: Inside Facebook”, a doco from the Beeb was broadcast. I wanted to watch it to validate my ongoing delusion that Facebook in itself is not bad, evil, nefarious, insidious, and is actually just a tool – like a hammer – that can be used for good in the right hands, or evil, in the wrong hands. The obvious corollary being if you control the tool, and use it with good intent, no-one gets hurt.

So, after about 40 minutes or so of a glowing portrait of a geek made good, I wondered if the program was going to put the light on the elephant in the room, and that is that there is a public perception that Facebook is not all good, and Facebook as a tool actually can do harm. After gushing mili-second vox pops of Facebook users boasting of having thousands of friends on Facebook, I was beginning to feel a bit nauseous.

And then, when Peter Pan (AKA Mark Zuckerberg) explained the *Like* system on Facebook, the light went on in my head as to why Facebook sometimes has such a bad reputation. For those of you that don’t know, the *Like* system means that every time a Facebook user clicks on a *Like* button of the Facebook page of a company – Coca-cola, for example – the company pays Facebook: the more clicks on *Like* by millions of users, who are in essence giving a positive rap to that company, the more the cash register rings at Facebook Inc. And the more ‘friends’ you have, the more likely that *Like* system spreads for products, the more the cash register rings at Facebook Inc, and on and on it goes. The need to have friends almost at all costs, becomes insidious.

Let’s go back a bit. I’m middle-aged right? when I was growing up in the 1960s and 70s, there was still this quaint social institution called pen-pals. If you were a pen-pal, you corresponded with someone you’d not actually met; but what you wrote about took the form of a conversation. So, now I’m officially an old git, and I use social media, I use my chosen social media in the same way. It’s about having a conversation with someone, who I also think has something interesting to say. And my conversations are with people – and sometimes institutions – that I care about. I’ve never *Liked* a company or product on Facebook. And I’m not about to start.

On Facebook, my ‘friends’ are family – nieces and nephews, who are scattered around various parts of Australia – and groups that I have something in common with, such as the Chromosome 18 Group, and the Australian Rare Chromosome Awareness Network Group. That’s it. You won’t find me on Facebook if you Google my name, because my version of Facebook is – he says smugly – a meaningful and private use of the tool. Facebook for me is about friends and family, and groups, I care about, want to listen to, and talk to. That’s it.

There are many options with Facebook; how you set your privacy, how open you are to being friends with someone you don’t personally know, and are never likely to meet. But above all, Facebook provides a free and user-friendly means of having meaningful conversations.

 

At least I know I’m in the naive minority who think and do the same way. I know my limitations.

Will I still be using social media when my children are 20-something? Probably.

Will my children be using social media? I’d be very surprised if they didn’t. And they’ll use it properly too, damn it!

 

 

 

 

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I’m off to see The Wizard: but why will I be sad?

September 2011 Dad passed away at the age of 94. A ‘good innings’, and a pretty full life.

He’d done his bit in WW2, serving in the 2/7th Field Regiment of the Royal Australian Artillery, in North Africa and Borneo.

For many reasons, Dad didn’t volunteer a lot of information about his experiences of that time, but when he did, it was remembering the good stuff, the times when they had a laugh, not the times when fear and the chance of annihilation were present.

One story he did occasionally recount was, in the end, apocryphal of that time time abroad, when neither he, nor his mates could be certain about what was around the corner. And this story I’m recounting is in the context of an episode of remembering by my 5 year old son Max of ‘Nonno’, and what Anzac Day means now for Max. For a number of recent years we’d made the trip back to Adelaide to help Dad out on Anzac Day; either I, or my nephew Jonathan pushing Dad in a wheelchair at the head of what was left of his regiment in the Anzac Day march. The other night, at home with Max, at evening story-time, I reminded Max that we wouldn’t be going to Adelaide for Anzac Day this year, as there was really no need, now Nonno had passed away. Without a blink, Max suggested we go anyway, and push an empty wheelchair in the march, to remember Nonno: then he buried his face in his pillow and sobbed.

Anzac Day this year is in 5 day’s time. So I’m in a bit of reminiscent mood.

So to The Wizard of Oz.

Dad told the story occasionally to us of his special connection with The Wizard of Oz. Released for the first time in 1939, the story began with a night at the movies for his regiment in Perth late November 1940, just before embarkation to the Middle East. The Wizard of Oz was the main feature. The regiment arrived in Palestine mid-December 1940. Dad told the story: as they were marching in to barracks, someone started to whistle (against regulations? who knows?), We’re Off To See The Wizard, The Wonderful Wizard Of Oz – then the whole, or most, of the regiment joined in. It seems ironic now, and probably was at the time, that they were marching along to war, to a future none of them could predict with certainty, to such a light-hearted and optimistic tune.

 

We're off to see The Wizard

 

In October 1942, the 2/7th played a vital role in the Battle of El Alamein.

 

Artillery in action: Battle of Alamein

 

How many of those young men who had joined in the jaunt of whistling a happy tune didn’t return home to Australia, and family, and loved ones?

Dad wouldn’t dwell on the losses he experienced during his time in North Africa. I don’t mind that his stories of overseas service were only about the funny, the light-hearted, and the adventurous times. (The best story was when he was on duty as Officer-in-Charge, when a regimental contingent had a ‘night out’ at the local brothel…)

 

And so tonight, there’s a screening of The Wizard of Oz at son Max’s school. Max loves The Wizard of Oz, as he does many other musicals of the 1940s and 50s. We’re going as family. Any just maybe I might feel a bit sad; but then again, the movie is about hope, and optimism, and cccccourage.

 

 

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A Special Girl has turned 3

Gracie had her 3rd birthday on the 19th February. Cousins, Aunties, Uncles, and street friends came over to celebrate.

 

Opening presents

Gracealena Ballerina

 

On a muggy mid-summer day we packed up the food goodies that Mum and Auntie Caroline had cooked and prepared until 2.00AM the night before, and off we went to the Clifton Hill Quarry Park playground, for swings, rides, cricket, home-made sausage rolls, cordial, cricket, soccer, rides, more cordial, and pink lamingtons.

 

Cousin Tayla, Me, And Zoe

Cricket with cousin Tayla

 

Home for ice-cream birthday cake (made by Mum & Auntie Caroline), time on the floor with new Lego, and then best of all, a swim in the backyard wading pool.

 

Ariel and Cindarella adorn the icecream cake

Gracie loves the pool

 

This is going to be such an interesting year for our Gracie. The crew at Early Intervention are helping us with an application to 4 year old kinder for next year (2013). If Gracie gets a place, she’ll have an aide (the Kindergarten Integration Support Scheme), and she’ll be at the same place that Maxie went to. All the staff know her, and would love to have her there.

As this year unfolds, it’s become obvious that Grace’s greatest problems are with expression and language. There isn’t anything she doesn’t get. Ask her to do anything within her physical capabilities, and she’ll do it; she’ll even try things she isn’t capable of. Always a trier. Like trying to blow out candles…

 

Happy Birthday to you!

 

As part of applying to go on the wait list for 2013, Gracie’s helpers at Melbourne Citymission Early Intervention have provided a progress update report to go with the application for kinder.

Jennifer (physio), Amy (occupational therapist), and Jo (speech pathologist), have put together some kind words about our Gracie.

Here’s a snapshot:

Grace is a delightful and social girl who is eager to engage with people and is willing to try any activity. She is patient and persistent and rarely gets frustrated. Her low muscle tone throughout her body makes some activities requiring postural control more challenging for her. She also has some difficulty planning new movements, which affects gross motor, fine motor and oral motor (language) functioning.

And I love this one:

Grace presents as an active socialble child who really enjoys being around other people. She enthusiastically participates in a range of activities and has a ‘can do’ approach to any challenges that occur. She is generally confident with new adults and is able to connect meaningfully with a range of people.

That’s our Gracie!

Happy Birthday To You!!

 

 

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A new year, and a fresh start.

2011 was mostly significant for the passing away of my sole remaining parent: Dad died on the 27th September. He was tired and worn out, and deserved to let go, at the age of 94.

My siblings and I have worked together to distribute amongst ourselves items of significance from our family life: I’ve been entrusted with the family collection of photographic slides and 8mm home movies. (And Dad’s collection of woodworking handtools. I’ll use them to build a small off the beach sailing boat later this year. Stay tuned for that story!)

The slides and movies go back to the time before I was born, in 1959, and go up to the last few years. They are a significant slice of social history. My job is to scan the slides to be put up on my Flickr page so that my siblings and I – and eventually the world blogosphere – can also enjoy looking at this snapshot of Australian social history. And the 8mm movies….wow! Of course, they’re silent, but they’re filmed in rich Kodak colour, which is for those of you who know pretty wonderful. I’ll be scanning those movies to digital files and posting them on my Vimeo page with the same intent as the slides.

Which brings me to one of my favourite topics – home movies, and ‘slide nights’.

Home movies, were for my family, pretty much our only source of in-house entertainment when I was growing up. Some evenings, after dinner was finished, Dad would pull out the Bell and Howell movie projector, and we’d watch again and again home movies of family holidays, and get togethers with cousins, aunties, uncles, grandparents. The projector would sometimes just be set up on the kitchen table, to screen on the door of the fridge. The same with slides. In the darkened kitchen, with the musty smell of the movie or slide projector getting hot, we’d be transported to other times. We talked, we laughed, and we were satisfied in a way that good screen-based entertainment can be satisfying, and well, nurturing. They were times when we became briefly close and connected as a family, instead of the semi-connected individuals that I recall we were for most of childhood and adolescence.

In recent months I re-named my Vimeo page ‘Richard’s Home Movies’. A bit twee, but that’s what they are. Sure they’re out there in the world wide web for anyone to see, but they are an intimate portrait of my family life with my children and partner. These videos are comforting. And they are a record of our family life that our kids love watching. Max has even started make his own movies: “doct-u-mentaries”, he calls them.

And here is the most recent. Just a compilation of a few days in our life, that started with Chinese New Year celebrations in the city, and a day out when the kids and I went to the Melbourne Aquarium.

So this year will be the sort of fresh start that means day to day life is only about my family – my partner and the kids – and nothing else. I’m resolved to bring from my upbringing only the best parts of my childhood – as few and far between as those ‘best parts’ were – and use that as a basis to nurture the development of my family towards an entity that is not only connected in some uniquely identifiable way, but where we will be meaningfully dependent on each other in such a way that we grow together, all of us, no matter what highs and lows come our way.

And this year’s new journey began with Maxie’s first day at school yesterday. It seems like only the other day that he started kinder.

First day at school

Day 1 of the next 13 years of schooling

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Cape Otway: rockpools, lightstation, forest.

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Can a rare chromosome disorder be a rare gift?

Chromosome disorders don’t happen overnight. You don’t catch a chromosome disorder. You’re born with it, and you have it forever.

When our daughter Gracie’s pediatrician carefully, resolutely, and with a disarming and confidence-inspiring smile gave my partner and I the news late in 2010 that Gracie did have a chromosome disorder, it’s not overdoing it to say that we began a grieving process that will probably go on for some time yet.

My heart missed a beat or two for probably 15 minutes.

While I listened to the pediatrician tell the story of the rare disorder that Gracie has, and how the genetic testing was accurate – ‘there’s no doubt about the results‘ – one side of my brain was gathering in the facts, and the other side was going – ‘No! But she looks OK! She might be a bit delayed in her speech but she’s not abnormal! Does her beautiful smile hide some terrible truth?

While Gracie played with the well-worn well-loved toys around our feet in the pediatrician’s office, she didn’t stop being the girl she was before we entered the office on that fateful day. Gracie was smiling, happy, sad, hungry, tired, curious, giggling – everything she had been since she was born. None of that changed on that day. Nothing was actually taken away from her on that day.

If anything, what was taken away (in my head, at least) was any certainty about her future life panning out in the ordinary way that you expect an ordinary child’s life to do.

From that moment Gracie was no longer ordinary; and yet she was and still is, a little girl with ordinary needs. She’s ordinary, extraordinary, and rare.

A rare disorder isn’t ordinary, by definition. Gracie’s conditon occurs 1 in 40,000 live births. And yet her needs have always been quite ordinary. Luckily Gracie hasn’t needed the range of interventions that some children with rare genetic disorders do require. Sure, she’s getting physio help and speech therapy from the lovely crew at our local Early Intervention Service. Oh, and she now has orthotics for her feet. She just missed out on getting growth hormone treatment; phew! so no daily injections from me until she reached puberty.

So if Gracie is a mix of the ordinary – in her needs – and the not ordinary – in her condition, how could her condition be a gift, even a rare gift?

Well let me tell you.

The gift – and I will only speak about her as I see it – is that even though Gracie finds daily life difficult: she’s hungry, and can’t eat enough; she’s not hungry, and isn’t interested in food no matter what we do; she can’t run around after her big brother or her cousins, she’ll try though – stomp, stomp, stomp, stagger, trip, fall, up again, stomp, stomp stomp; she can’t tell us what she wants, or likes, or desires, or fears, or loves; she gets a mild fever sometimes, and that means she’s wasted for days afterwards…her special and rare gift is that she won’t give up.

Gracie wakes up smiling. Nearly every day. No matter what.

She just keeps trying, quietly trying.

She just will not lay down and mope in the corner. She’ll play by herself quite happily. She’ll flick through books from Max’s shelf, contentedly looking at the pictures, words, shapes, colours. She’ll stab at things on the page with her finger, look at me, and make a noise: “Yes”, I’ll say, “it’s a ball, a duck, a fish, a tree, a rainbow.”

Walking independently has been her biggest acheivement so far. We tried to help her, but she just did it herself. Running her hand along the passage wall to steady herself; pushing a little laundry trolley or block trolley in front of her.

She’s learned a handful of important signs from Auslan: drink, eat, more, down, finish, what?

And the best sign she’s learned isn’t Auslan. It’s blowing a kiss hullo or goodbye.

Gracie will be 3 years old in February 2012. The journey has only just begun. Who knows what the future holds?

Like any child that comes into the lives of Mums, Dads, brothers, sisters, Gracie has brought a rare gift, despite – and at the same time, because of – her rare condition.

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Cargobike v Car? Evidence = RiderLog @bicycle_network

On an ordinary Monday in Melbourne  (although it was forecast a balmy 25C / 77degF) the day on our Xtracycle cargobike began with drop-off of the Max-man at kinder. Time for a quick coffee, baby cino and an Anzac biccie at the nearby Abbotsford Convent Bakery afterwards.

A baby cino, and Anzac biccie and thou

Then back home for housework, and playtime in the cubby for Gracie. Distance travelled so far; about 6 kms return + 2 kids. Easy peasy.

Later in the day, after a phone-call from my partner who was at a one-day conference in beachside Elwood, the decision about dinner that night was settled. Fish and chips on the beach. Awesome!

My partner had the car. The options were – after I’d picked up the Max-man from kinder on The Blobinnator (our Xtracycle):

  • Ride to a train station, and catch a train to Elwood, + or – The Blobinnator.
  • Ride to Elwood, with the kids.

Easy decision, really. We rode, of course.

So it was Gracie (who fell asleep in the Pea Pod anyway), the Max-man and I, that embarked on a little jaunt from the inner Melbourne suburb of Abbotsford, to Elwood Beach: distance 14.73km (7.4 miles), at an average speed of 11.95kmh (7.4 mph). Not far or fast, but it was about 150kgs (330lbs) I was punting folks. It took me 1  hour 13 minutes.

First stop was the St Kilda marina, for a fortifying cafe latte, and juices for the kiddies. Sitting and watching the idle yachting real estate made the effort that much more satisfying.

Cafe latte and a coupla juices

And the ice-cream at Elwood beach tasted so much better for the effort when we made our destination.

The ice-cream was dripping down elbows: yummy yummy!

Then after we rendezvoused with Mummy, it was the long-awaited fish and chips on the beach.

Ackland Street St Kilda fish and chips

Now you might wonder what the fuss is.

Well, when my partner drove to Elwood earlier in the day, it took her about 1 hour. That’s about 12.1kms. In a car. One person, in a car. And at morning peak hour, she was surrounded by a lot of other cars. One person per car.

Later in the day, around peak hour, I rode – with 2 kids – a greater distance, and it took me a little over 1 hour.

This morning, as I was about to throw my leg over The Blobinnator to commute to work, my partner said she would’ve preferred – with hindsight – to have ridden her Xtracycle to the conference. Maybe next time. Although when you don’t know what the end of trip facilities are like, you really might not want to arrive at a conference all sweaty and rank, and nowhere to clean up. And public transport from our suburb to Elwood would have taken up to 2 hours. Absolutely crazy!

Isn’t it nuts that most people choose to drive though, when a bike can do the same job, in much the same time, at the same average speed?

Oh, and there’s that exercise thing too.

 

If you are a rider and commuting cyclist, and you want evidence for this, download the RiderLog app to your iPhone; the evidence speaks for itself.

 

 

 

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