The Theory of Everything - and achieving stuff

My partner and I went to see The Theory of Everything yesterday. We'd seen the trailers and read some of the reviews already, but even so, were quite unprepared (both of us) for the impact of the film. 

Felicity Jones and Eddie Redmayne with Stephen Hawking

I didn't know much about Stephen Hawking, to be honest. I'll have to do some reading now. In a way, going into the movie with little background knowledge possibly wasn't a bad thing. I was very ready to be 'told' the story. Above all, the strongest impression I was left with wasn't so much the man's brilliance, as his strength of character and utter refusal to give up, in the face of the seemingly impossible challenge of a disease that was going to rob him of everything but his mind. 

The early scenes as he's struggling with losing coordination, before he's diagnosed, had me wiping tears away - I SO remember that stage with RA. Realising that something is happening, but not knowing what it is. Keeping on with normal life despite the changes, because that's what you do. Then the point - in Hawking's case in the film, following a crashing fall in the quadrangle at Cambridge - where it's taken out of your hands when the doctors enter and the investigation starts... I'd like to make a clear disclaimer before I write any more - I'm not, in any way, trying to medically equate RA with Motor Neuron Disease. They're very different diseases. What I can identify with, however, is the loss of 'normal' function and the confronting reality of having to face a life that is going to be very different to the one ahead of someone in good health. 

For me, this movie is a story of triumph over circumstances, and one that holds a valuable lesson for everyone. We ALL have 'stuff'. It might be illness and/or disability. It might be family issues. It might be learning difficulties. It could be ANYTHING. The notion of a 'perfect' life is a myth! If we can accept that, we can put ourselves onto a much more constructive approach to dealing with life as it comes to us.

My own experience of being diagnosed with a chronic, degenerative disease was accompanied by lots of well meaning, but totally misguided, advice to slow down, stop doing a lot of the things I was currently doing (and loving), rest more, give up stuff, and so on. I was twenty eight, had just gone back to work as a chef, was singing in the chorus of an opera company part time, had a six year old at school and a nursing seven month old baby when things started to change. It was another year before I had a diagnosis. That was twenty three years ago, and I STILL get people telling me what I can and can't do - "because or your arthritis". 

One of two things happens when you tell someone they can't, or shouldn't do something. Either they cave, or - like me - they get bloody minded and do it anyway to prove that they can! Either of those responses can come from their innate personality, or it's something they've learned to do due to circumstance. Among other things, I'm an artist, so I'll use the following analogy simply because it's something that comes up regularly in conversations I have with all sorts of people. How many people do you know who say they can't draw? Now, take a room full of preschoolers, give them paper, crayons or paint, and what happens - they draw and paint without any thought about can or can't - it's just about the pure joy of making marks on the paper, and the results are wonderfully spontaneous and creative. Take that same group into school, and how many years is it before you start hearing "I can't" - and WHY? 

I watched this with my boys, both of whom have considerable ability with a pencil and other creative endeavours. Over the years, as I fought their teachers on this matter, I realised that so much of what got in the way of them continuing to have the joy in the drawing process, and therefore, the desire to keep doing it and exploring their creativity, was that they were told that what they drew was 'good' or 'bad', 'right' or 'wrong' - and those judgements affected their perception of their own ability. My younger No.2 is very much an innately bloody-minded type, so it had less effect on him overall. No.1, however, had to be carefully nurtured through that, and I fought many more battles on his behalf, right into high school, until he finally dropped art to fit in the subjects he needed for Year Twelve. 

The point of the analogy, of course, is that when we pass judgement on people's ability to achieve things, we do more than just say the words. We can be, with the best of intentions sometimes, seriously undermining their confidence in their own sense of what they can and can't achieve. There are a gazillion memes that float around on social media sites that allude to the idea that the only thing that blocks us from achieving things is ourselves. Unfortunately for children, that's something they have to learn, and sadly, it's something many people don't start to even begin to understand for themselves until their childhood conditioning has well and truly bedded in and blocked them from all sorts of potential. 

There were all sorts of things I envisaged myself doing, as a child, and most of them I didn't do - voicing them brought down, all too often, responses of "don't be ridiculous" - because I was a girl, or because we lived in the country, or because they were outside my parent's areas of understanding or interest. I lost interest because I came to feel that those things were unattainable. When it started to happen to my children, I regained my voice on their behalf.

In his early teens, No.1 joined the RAAF cadets, and within a couple of years was seriously considering heading into the air force once he'd finished school. His father's response to that was to start bombarding him with all sorts of awful statistics about life expectancy for fighter pilots (he wanted to be top gun, of course!), and other hugely negative aspects of being in the defence force. He came to me asking what I thought. I took a moment and gave him two answers. One, that as his mother, I was horrified by the idea because there is NO parent on the face of the planet that wants to see their child going into a profession that, by its very nature, puts their lives at risk. He took that on the chin, and asked what the other answer was. I told him it was his life and his choice, and if he chose to do that, I'd back him all the way, because I had no right to stop him making his own career choice, regardless of how I might feel about it. As it happens, he didn't join the RAAF. But, one of his mates did, and I believe he took some of that conversation to his mate's mother when she had a huge melt down about it.

The bottom line is, and this is what's been running around my head since the movie, no matter what life throws at us, we are only limited by the blocks we make for ourselves. It's probably the single most valuable lesson we can start teaching our children from the very beginning - encouraging them to have a go, even if we, from our perspective, might consider that they may not succeed. Ultimately, that's for them to discover - and then find another way to tackle it! 

Guns and toys

I bought the current issue of Australian Marie Claire with my shopping this week - it's one of my guilty pleasures. I like the reportage - and the fashion and food sections! In amongst the articles is part of a photographic essay by Belgian photographer An-Sofie Kesteleyn that was inspired by the story of five year old Kristian Sparks, who shot his two year old sister, Caroline. It wasn't like so many of the stories you hear about kids playing with their parent's weapons and discharging them. It was with a gun that is being marketed in the US as a child's 'first gun' - and comes in pink and blue, just like baby clothes.

To be fair, clearly Kristian's parents didn't intend for him to be shooting people when they gave him the gun for his birthday. However, what is a common practice in many places in the States, where hunting and gun ownership are the norm, clearly creates an environment where accidents of this type are almost certainly going to be much more frequent. Within this sector of the community, teaching a child to handle a gun early is 'normal'. From my own perspective, thinking back to when I was five, that was the age my godmother took us all to learn to milk the house cow! With my own children, I think they were at a stage where, perched on a chair, they were learning to do most of a load of washing up by themselves. 

American gun culture is pretty alien to me, I have to say. I get the historical context from within their constitution - the statement about the 'right to bear arms' which dates from times when the country was in its infancy. However, given that it's in the constitution, it's become something that smacks - to me - of a sense of entitlement to, at times, take the law into one's own hands. And certainly, it means that gun ownership is something that isn't restricted to those on the land, or in gun clubs for sport, as we find more commonly here in Australia. The Port Arthur shooting prompted then Prime Minister John Howard to initiate a review of national firearms laws, and there was a huge buy back initiative of restricted weapons.

Accurate statistics are not available for the number of people killed by children accidentally shooting them. Off the top of my head, apart from the Kristian Sparks case, two other cases come to mind from recent times - one, a toddler who shot his mother in a supermarket with the pistol she carried in her handbag, and two, the nine year old girl who killed her instructor with an Uzi at a shooting range. 

In the first case, the woman apparently always carried a pistol, because she comes from a family who love to hunt and all own weapons. The pistol was in a specially designed pocket in her handbag, specifically for carrying a concealed weapon, given to her by her husband. She was in Walmart with the toddler in the trolley, and four nieces on foot with her. A moment of distraction, a curious toddler rooting around in her bag, a gun with the safety, obviously, not on...and now she's dead. In the second case, the nine year old girl was being instructed in the use of an Uzi - a high powered automatic weapon used by the armed forces. You have to ask WHY??? Why on earth is a nine year old being taught to shoot in the first place, and with a weapon like that? By all accounts, the kick back from those is hard for an adult to manage, let alone a child. It makes no sense at all. 

What Kesteleyn's photo essay really hammers home is the 'normality' of guns in American culture. While events like the Sandy Hook massacre have galvinised more people to protest for changes to the gun laws in America, the gun lobby appears to be an extraordinarily powerful force, and nothing much seems to be changing.

Cross to Sydney, and the recent siege at the Lindt Cafe with the loss of two innocent lives. In the wake of that event, independent senator, David Leyonhjelm wrote an article for the Sydney Morning Herald claiming that if Australians were permitted to carry weapons, there'd have not been the tragic outcome of that siege, as hostages would have been able to defend themselves. Leyonhjelm's party platform includes a mandate to be able to own and carry weapons, among other things. However, from the backlash against the article, it would appear, thankfully, that the majority of Australians don't agree with him.

I find myself, each time I hear of a new gun tragedy in America, being deeply thankful I don't live there. That similar incidents are much rarer here. And that's how I'd like to see them stay. I don't want to see our society reach a point where they're complacent about guns, because it's 'normal' to have them. I grew up partly in the country, so I knew people who had them who lived on properties. They weren't complacent. Those guns were locked up with the ammunition in separate locked cabinets whenever they weren't in use. And certainly, as little kids, they didn't have access to them, ever. One of my mates got given his first gun, a twenty two, for his 16th birthday. That was pretty standard. And again, there was a context. They were on properties, having to deal with feral foxes, rabbits and other pests, as well as having the capacity for putting down stock that got injured or was sick. So, it was part and parcel of the business of farming. I can see the attraction of sport shooting too - clay pigeons, and range shooting. I did archery for a little while before my shoulders gave out, and loved the mental challenge of the focus needed to hit the target. Since I can't do archery any more, I've toyed with the idea of a pistol for the same challenge - but I don't really want to shoot a gun. And in any case - again, it's not about hunting, or wanting to have a gun to have a gun...

My instinctive reaction, always, when I read about these shootings is that guns aren't toys. I got into fearful trouble with No.2's father's family when I refused to allow them to give the boys toy guns. The very idea of making toy versions of them dilutes the concept that they're NOT toys. They're dangerous weapons that are designed to kill things. It didn't stop the boys playing shooting games - like my brother, friends, and I as children, they made them out of sticks and Lego. There was a clear element of make believe involved. Offer them replica guns and that fantasy element is hugely diminished. With the kids in America, they don't even have that element of fantasy - they're being given real guns. They're growing up with this as 'normal'. There is nowhere in my thinking that I can find that that's OK.

*Images from An-Sofie Kesteleyn's photographic essay, with the drawings she asked each child to do to tell her what really frightened them. For me, the absence of fearful things that could be dealt with by shooting is particularly telling.

The death penalty - who is responsible?

After six people, five of them not Indonesian nationals, were executed yesterday in Indonesia for drug trafficking, there have been renewed calls on the Australian government to intercede for Australians Myuran Sukumaran and Andrew Chan, who after their appeals have failed, face death by firing squad sometime this year. Foreign Minister, Julie Bishop, appeared on breakfast television this morning, stating that she and others continue to 'make representations' to the Indonesian government, and the press is full of articles that voice Australian outrage about the death penalty.

Andrew Chan and Myruan Sukumaran

Those executed yesterday included a Brazilian and Dutch national, and the ambassadors from both countries have been recalled home in protest, after pleas from their respective governments failed to sway the decision. Bishop was asked if, in the event that Sukumaran and Chan are executed, whether Australia would recall its ambassador too. She fudged the answer on that, but as my partner queried at the time, Indonesia is one of our strongest trading partners, and we have a ticklish relationship with them at the best of times, so will the government risk that for two individuals who made a bad choice?

Personally, I am against the death penalty. I don't honestly believe that killing someone solves the issues surrounding this particular crime, or indeed, many other crimes. The Hoopla ran a story today asking how executing people can stop drug trafficking. The evidence, with people continuing to traffic drugs, even to countries with severe penalties like Indonesia, would suggest that the lure of 'easy' money is stronger than the potential deterrent of a death penalty, should you be caught.

At the same time, I have to feel that people who continue to smuggle drugs in and out of Indonesia have to be incredibly arrogant or completely stupid - it's not as if we in Australia are unaware of the stiff penalties those who are caught could face. And despite the many articles and news stories that speak of Chan and Sukumaran's rehabilitation during the time they've been incarcerated, I find myself wondering how much of that has been due to having had a death sentence hanging over them for the years since they were arrested. Clearly, at that point in time, their focus was on moving the drugs and making their money - and there was, perhaps, little thought about the havoc those drugs would potentially wreak on many many people and their families. 

I wrote recently about my younger son and his recent very bad choices that have lead him to become addicted to ice. It's now two months since that hurried trip to his home town, and I have no real news of him. A couple of weeks after I returned home, I had an email from the mental health nurse with whom I'd been corresponding to say she'd managed to speak to him briefly, and that he sounded OK, said he had somewhere to stay, and that, no he didn't want to work with them. Last week, I had a call from his psychiatrist's receptionist, as he'd missed a number of scheduled appointments, and they'd not been able to contact him. All I could do was pass on his current phone number and hope he still has that phone. The text message I sent a few weeks ago disappeared into a black hole. 

I deplore the choices he's made. I am so frustrated and angry, on top of being worried sick, by what looks to me like a giant cop out. He told me when I saw him that the ice made him feel like he could cope - which is all well and good until he takes some from a bad batch, or ODs... I have NO good feelings about the people dealing this appalling drug, and would want to see them punished to the fullest possible extent of the law if they could be caught. Here, that wouldn't mean they face a death penalty - just a very long time in prison. And I don't believe that in itself is sufficient deterrent either, because it's clearly not deterring people when the number of ice addicts (not to mention other drugs) is growing, and the median age of addicts is getting much lower. 

I feel so bad for the parents and family of the two men in Bali - who, through their son's bad choices face losing them, just as I face the possibility that I may lose No.2. We're not meant to bury our children. 

However, and what prompted me finally to write this post, this is - at rock bottom - about choices. As I said to No.2 - like a broken record, because I've been saying this to both the boys forever - there is ALWAYS a choice. We may not always like the options we're looking at at any given point in time, but there always is a choice... Those boys in Bali didn't have to traffic drugs. They could have done what many others do, and looked at career options long term. As it is, they've both been studying while they've been incarcerated, and are close to finishing university courses. Why didn't they do that earlier? Sure, it's not the way to 'easy' money, but it's not going to get them killed either. As a parent, I'm sure I know which way I'd rather see my children make that choice. No.2 spoke many times over the last year about the study options he was considering, once he'd found a job and got his routine back on track. I did many things to help him towards that, but in the end, apparently it was all too hard. 

Along with the choices we make comes the responsibility for the consequences. Like it or not, those two things are irrevocably linked. I remember, way back when the boys were tiny, teaching them about consequences. Simple things; if you don't put your toys away, I'll put them away and they won't be there when you want them next. Your toys are your responsibility. It worked. After suffering through the loss of their toys, they learned to tidy up after themselves when they'd been playing. Teaching children is an incremental process of things just like that - the bigger they get, the more important the choices, and the bigger the stakes when it comes to consequences. It may sound like I'm over simplifying this, but honestly, WHAT were the Bali Nine thinking when they made the choice that they did? They knew the possible consequences. They had to know that they were taking appalling risks. Even if they'd slipped through and not been caught, what about the flow on from their actions for countless numbers of others? And ultimately, had they not been caught that time, if they'd continued, eventually their luck would have run out... Is it a symptom of the times we live in that people don't think through their actions? And then, when it all falls apart, that someone should rescue them - because by our lights, the consequences are unfair? 

Indonesia has had the death penalty for serious drug trafficking for some time. When we leave Australia and travel to other countries, we are bound by the laws of those countries when we're there, just as visitors here are bound by Australian law. Surely THAT'S the message that should be getting through. Surely people should be looking at this particular case and realising that there are no easy outs. And, if it comes to these two young men being executed, it won't be because our government failed to sway the Indonesian government. It will be because these two men decided to traffic illicit drugs in a country where they knew that if they were caught, they could die as a consequence. And they did it anyway.

The Vaccination Myth

Every time I think the discussion about vaccinating children has fizzled out, it rears its head again. Dragon Dad and I just got back from a walk to our local for morning coffee and the papers. While we were out I read this article by Elizabeth Farrelly in the Sydney Morning Herald about the current situation where we have American anti-vaccination advocate, Dr Sherri Tenpenny, booked to come to Australia on a speaking tour. There has been a vocal response from many in the pro-vaccination sector demanding she be blocked from entry to the country, with a counterpoint saying that Australia's right to free speech says that she should be allowed to come and those who don't want to hear what she says just don't have to go.

Farrelly's discussion revolves not so much about the pros or cons of vaccination, per se, as much as who we, as members of the public, should be able to trust when it comes to the available information about the issue. Well-known medical journal, the Lancet, published a paper in 1998 by Dr Andrew Wakefield that started the MMR-Autism scare and subsequent furore, prompting significant numbers of parents to not vaccinate. That myth has since been solidly debunked, Farrelly citing a 2014 study by University of Sydney Associate Professor Guy Eslick which found 'a consistent ... lack of evidence for an association between autism, autism spectrum disorders and childhood vaccinations', based on a study of 1.25 million children. The Lancet article has since been retracted, with the editors officially saying they 'regret' publication.

The anti-vaccination crew's main argument against childhood vaccinations is mostly based on the potential harm the vaccinations can cause - from allergies to long term serious conditions. As far as I can see, this comes with a (to my way of thinking) willful ignoring of the hazards of NOT vaccinating. As Farrelly says,

But first to the science. There is little doubt that vaccines work, or that anti-vaccination campaigns are largely snake oil.

Take measles. The World Health Organisation announced in March that Australia had eliminated measles, but every year sees a few hundred cases amongst the unvaccinated. 2014 saw outbreaks in every state, with spikes in Queensland, Victoria and WA. Melbourne recorded 56 cases between January and July, the highest since 1999.

Measles doesn't sound serious. Certainly I had it, as a child. Yet one in 20 children with measles will develop pneumonia, says the United States Centre for Disease Prevention, and one in 1000, encephalitis. One or two in a thousand, mostly infants, will die. (Tenpenny, a doctor of osteopathy, puts this figure at three  in ten million).

Or take pertussis (whooping cough). Between 1981 and 2009, rates across the world roughly halved. In Australia, however, they soared – from 170 cases in 1981 to 29,545 in 2009 – prompting Professor  Peter McIntyre, from the National Centre for Immunisation Research and Surveillance, to tag Australia "the world capital of pertussis."

My boys are 29 and 23, so come vaccination time for them, it was still early days in the debate. I do remember some rumblings, but not nearly enough for me to even consider NOT vaccinating them. With No.1, we had a few days of a mild temperature and fussiness, but that was about it, as far as reactions go. He then went on to a disgustingly healthy childhood - the most serious thing we really had to deal with was a particularly nasty case of chicken pox (vaccinating for chicken pox wasn't a thing then) when he was four, and for him, the main tragedy of that was that he couldn't have a birthday party...

No.2 was quite different. At 8 weeks, we trotted off to the local baby centre for the first shot. Within a couple of hours at home, I had a baby spiking a humungous temperature, and projectile vomiting the baby panadol I tried to get into him to bring it down. It ran for ten days, and was terrifying - all the more because I'd experienced a febrile convulsion with No.1, and really didn't want to go there again. All the doctor could suggest was sponging him down and feeding him as much as possible to try and prevent him becoming dehydrated. She also suggested that we do the next vaccination at four months in two parts a week apart. The nurse at the baby centre was a bit iffy about that when we went in, but caved when I told her that I'd leave without any vaccination unless she would do it that way. It didn't work. The temperature was marginally lower after the first dose, but not enough to make much difference, given it too ran for about ten days. Back at the doctor's, she said not to do the other half and suggested it was probably the whooping cough component, and to request the third vaccination minus that bit. THAT was fine. But it meant that No.2 was never properly immunised against whooping cough, and with the rise of cases due to lack of immunisation that was a constant worry during childhood. Fortunately, he was never exposed.

However, at six, after passing a monstrous gallstone, he had to have his gallbladder removed - on the ultrasound, it looked like a bag of marbles. The ultrasound also showed that one kidney was significantly smaller than the other one. The paediatric surgeon said that the formation of gallstones in such a young child could be put down to some abnormality that caused stones that formed during extended febrile episodes to not dissolve once he had rehydrated, and that the kidney indicated that those febrile epsiodes could have been due to undiagnosed kidney infections, but, there were also those extreme and lengthy febrile periods post vaccinations. We'll never really know, and he's healthy now. But, if I had my time over, I'd still vaccinate, because that experience was unusual - which may not be the case for thousands of children if infection and complications due to preventable diseases due to lack of immunisation continue to rise...

I would suggest, for the skeptics among us, that a bit of research into the stats in countries where vaccinations AREN'T done would be sensible, as well as looking at the changes in stats in countries where they are, but people have got on what I consider to be a hysteria wagon generated by irresponsible publications and self-styled alternative experts. Harsh? It's the lives of our children we have to consider, and the wider community. Vaccinations work. Only a small percentage of children will have a legitimate allergic reaction. Even then, the potential consequences of NOT vaccinating can be far worse. 

Please, folks, vaccinate.

Your kids and hard drugs - when to step away

It's been a rough week. A VERY rough week. Regular readers of this blog will be aware of the balance I try to strike between the personal and larger picture. When I first started out, that was partly because I didn't know how members of my family would handle me writing, essentially, about us, so using articles I found in mainstream media that triggered memories of how similar issues had been experienced and handled in my own life seemed like a relatively safe way to travel, maintain an element of anonymity, and preserve the privacy of my immediate family members. It helps that many of said family members aren't online a lot, and would tend not to go looking for something like a blog. No.2 did find this one - because he was following my other blog - http://bookkunkiesanonymous.blogspot.com.au/ - and he then kept quiet about finding it for quite some time before owning up and letting me know he thought it was pretty good!

It's No.2 who brings me back to posting because I'm struggling to deal with the latest thing in his life. I wasn't expecting it, so it's been a huge shock, and by coincidence, the Sun Herald published a two page spread today on the topic that gave me some very to the point information that both made some sense of what I'd experienced with him last week, and highlighted what a different position I'm in compared to the parents of the kids in the article. You can read the full article HERE.

No.2 has had a difficult year. Things were, seemingly, beautifully on track for him. He had a good job, an apartment, a slowly steadying social life, and he was in regular contact with me. He lives interstate, so I don't see him all that often, but we'd chat on Facebook, text and call each other, and I'd try and get to his hometown at least a couple of times a year. Illness, on my part, has been a fly in the ointment as far as travel has been concerned more recently, so that's been a bit limited, but he was aware of the reasons. Then, at the end of last year, the wheels fell off. His work contract came to an end, and though a series of strange and still largely unexplained events, he became homeless, was on the streets, in and out of a boarding house his father paid for, and finally ended up admitted to the psych ward of a large city hospital, having cut off contact with me. He was diagnosed with Borderline Personality Disorder. The consultant psychiatrist at the hospital took him on as a public patient. Plans were made for group therapy too. He was there three weeks; complicated by his homeless state, they held him for longer than usual.

The hospital found him a room in a facility for people with mental health issues and drug use - NOT a nice place. But, a roof, and meals. I thought he'd hit bottom, and with ongoing therapy, assistance from various parts of the system, he could start to rebuild. It was a frustrating six months for me - No.2 didn't seem to be getting far. Didn't like his shrink, couldn't face looking for work while living at the hostel, wouldn't take up any of the training offers I offered to fund to help him get work (simple things - barista training, bar and waiting, etc), didn't appear to be taking up any of the offers of support that were available through the local mental health unit - he said that they weren't interested, didn't answer calls, etc...I have to question that now, in the light of recent events. 

Then a friend stretched out a hand, and invited him to move into her spare room. When her relationship broke down, she, No.2 and another boy found a place and made a new home, complete with a cat. So, no reason to not look for work. But no work eventuated. More excuses. I was starting to feel very frustrated, because at 23, there's a limit to what I can do for him - it has to be his efforts. Then, two weeks ago, the other boy had a meltdown and ended up in hospital. No.2 and his housemate were, understandably, considerably thrown. His housemate works, and just put her head down and got on with it. No.2 disappeared. Initially, I didn't twig - I'd not heard from him for a few days, but that can happen, and he's not always great about responding straight away to texts. Then I found the missed call from very late one night after I'd gone to bed, from an unlisted number, and a frisson of anxiety hit. Then later that day, a message via Facebook, using the hospital wifi (because that's where he was) from a very fragile No.2, who'd been picked up high, and apparently had no memory of where he'd been or what had happened in the intervening four days. I phoned a friend who said she'd collect him when he was discharged, because during that time, he'd lost everything - phone, keys, ID and money - and his housemate wouldn't be home from work til late. He agreed to this, and thanked me for stepping in. Only by the time she got there, he'd vanished. I called the police, who activated a missing persons file. He showed up of his own volition two days later, again high.

I travelled there the next weekend, at his housemate's request. She said she could no longer have him in the house if drugs were part of the picture - which I supported. She was still prepared to give him the four weeks notice that they'd all agreed on from the beginning if someone was to leave the house. Over the course of the day though, that changed. He was different. We were seeing behaviour in him that we'd never seen before. Even at his most down and feral, I'd never seen such cavalier and brutal lack of concern in him. He never even considered apologising to either of us for the worry of the previous week. There was much bravado, much defiance, and there was NO getting through to him how much we cared, how worried we were, and how difficult we were finding it to reach him - his response was that he just didn't care, only he wasn't that polite. 

No.2 is on Ice. It is one of the most awful drugs that's currently out there. It's highly addictive. It is appallingly destructive. In the article I read today in the Sun Herald, there was a quote that jumped out from the page at me describing some of the effects of the drug, '...all emotional empathy and attachment to loved ones disappeared out the window'. And that's exactly what we were on the receiving of. He was like a stranger. An extremely hostile stranger. In the end, his housemate said she didn't want him there any more, the four weeks weren't going to happen, and could he just leave. I dropped him back at the hospital, hoping he'd access help here, but he walked out again as soon as he knew I was gone. 

The mental health team from the organisation who have him on their books have tried to be in contact with him via the phone they gave him when they saw him at the house before I arrived. He won't talk to them. He's blocked me from Facebook, and won't answer my messages. The team suggested reporting him missing again, so I did. The police managed to locate him this time, and let me know, and that was followed by an extremely hostile text from him to tell me to 'bugger off'. The police had no reason to pick him up, so having spoken with him, left him where he was.

My son is 23. He's a very bright and talented individual. He has many great qualities and inherent talents. He is, quite literally, one of those people who could do just about anything he chooses to do. He's made a choice that I find impossible to understand, to blot out his difficulties with a dangerous, illegal drug, which could kill him. It has already substantially altered who he is. I don't know where he's staying. I don't know how he's getting money. Unless he gets back on track with the various government agencies he's listed with, his government support will be cut off. 

The thing is, at this point, there is NOTHING I can do. In the article, the concerns - rightly so - are for the kids who are getting into this drug at frighteningly young ages. The one spark of hope there is that they're young enough for adults to be able to step in and, initially, force some changes and help get them into programs. I can't do that with/for No.2. He's 23. He's an adult. He makes his own choices. And I have to, for my own sake, step back and accept that I can't control that. It breaks my heart. I love this boy. I'm appalled by this new situation. I am powerless to stop it. All that will happen if I push - as I discovered - is that he will be abusive. That does neither of us any good. His father has bailed. This is too hard. I don't need him to explain how hard it is. I was in the middle of it, trying desperately to rescue something from a situation that was, already, out of my control.

Kids, cafes, restaurants and other social occasions

A friend of mine had one of those experiences the other day... She was at a cafe, doing some work, and was startled by a shrill whistle that made everyone jump. She turned and yelled,"QUIET!" - one of those involuntary reactions due to the shock of the sudden noise. The perpetrator was a two year old child with a toy whistle, and the mother of said child then appealed to the rest of the patrons, complaining that someone had ticked off her child. My friend's quiet comment that perhaps noisy toys weren't the most appropriate toys for that environment brought on a barrage from the mother, who took the comment to mean that she was a bad parent and then went on to accuse my friend of having something wrong with her before storming out with her child. The incident, understandably, left my friend pretty rattled, despite being supported by the cafe owner. She later posted about it on Facebook, including in her post comments and queries about why things are so different now to when she (and I for that matter, given I'm older than she is) were small children, and the thread has grown to some 60-odd comments at the time of writing. 

Predictably, the comments range from support for my friend to those suggesting any number of reasons why that child could have been noisy, or why the parent allowed noisy behaviour in a cafe environment. One went so far as to suggest that by yelling, my friend had 'assaulted' the child. There were comments that spoke to special needs, the inability of very young children to conform to social norms, the sense of 'entitlement' that mothers of young children have that lead to incidents like this, and so on. 

Some way into the thread was a link to an article about a cafe owner in Newcastle, a regional city north of Sydney, who, in response to a recent negative review of her cafe, posted the following on her business Facebook page:

Are we child friendly? If you are looking for a cafe with a children’s menu, baby chinos, a play area, lounges for your children to jump on, vast space for your prams, an area for your children to run rampant, and annoy other customers, while you are oblivious to them — then the short answer is No, we are not child friendly. HOWEVER, if you would like to bring your children here and they are happy to sit at a table with you, while you enjoy a coffee, and are well behaved, please come in. Otherwise, there are plenty of places that are specifically designed to entertain your children.

 Again, predictably, there was a huge response, much of it accusing the cafe owner of arrogance and attacking of parents. But there was also huge support for the owner, herself a sole parent, who has put everything she can into creating the cafe, which is in a business precinct of Newcastle, to support her family. In response she is quoted as saying,

I have been subjected to children emptying salt and pepper shakers into my fireplaces, parents changing nappies on my lounges, kids grinding their own food into my carpet, parents sitting babies in nappies in the middle of dining tables, kids running around the cafe like it’s a formula 1 track [sic], jumping on the furniture, screaming - just for fun - not pain, and encouraged by their parents, upsetting the rest of the customers and I’d really just had enough.
When I have to stand there and watch people disrespect and damage MY belongings and property, it breaks a piece of my heart every time. Some will agree with my stance, some will not, but it’s my stance for my business.

The original post has since been deleted from the cafe's Facebook page, but there is a huge slew of comments at the end of the newspaper article, in which the balance comes down heavily on the side of the cafe owner. 

And then, there's the other side of the situation - the parents of small children. There were a range of comments on both threads, and the comments from the reviewer of the Newcastle cafe. There were the predictable anecdotes of different people's experiences with their own children, and also the cry that parents should be able to have cafe time like everyone else when their children were small... 

My experiences with my own children were completely different with each of them. No.1 was one of those easy kids who learned early to do things neatly and properly. He had his days, of course, when nothing was going to happen the way I needed it to, but from a very early age, he could be taken to cafes and restaurants and be sat up at the table with everyone else. He ate quietly and neatly, and was happy to settle with a book or his blanky while the adults around him went on with their meals. I don't know how much the fact that he was the first baby in our circle of friends had to do with it, so that he was the only small child present at these odd occasions, or that it was largely just his disposition. 

One thing that having more than one child teaches you in a big hurry is to not assume that you have it all sorted when the next one comes along! No.2 was completely different. He was a busy baby. He didn't have the long relaxed feeds that No.1 had indulged in. He didn't sleep for hours between. He wanted to be up and in the middle of things. Once he was mobile, he didn't stay in one spot for long, ever. He broke several baby plates by tipping them off the tray of his high chair the instant he'd had enough of what was in them - whether the food was finished or not. And then, he wanted down - immediately. I have nightmare memories of a trip away when he'd been given chocolate prior to a nap - the sweet little three year old I'd put to sleep woke up a hyperactive monster with all that caffeine and sugar in his system. The worst of it was that we were scheduled to be at a dinner that evening with the rest of the group we were travelling with. It was an appalling evening. He was climbing the walls, and the only thing we could do in the end was take him back to the hotel. It was years before he was prepared to sit still in cafes, and we rarely took him out to eat, because I wasn't prepared to put anyone through the stress of an outing - myself, him, or other people in venues.

My view - which I didn't have to think through very hard - was that unless my children were capable of sitting quietly at a table to eat, they weren't ready to be doing that away from home, and that it was my job to teach them that. Cafes and restaurants are public places, and there are acceptable codes of behaviour for being in them that apply to everyone, and children shouldn't be exempted from that. It's not their right, as small children, to run amok as they might at home, when it means disturbing other people who are attending the venue. At home, if they misbehaved at the table, mine were sent to their rooms, and their meal was forfeit. It was about a time and a place for things. Mealtimes were for sitting still, learning to be part of a conversation, learning about different foods (there's a whole other post there, so I won't digress now!) and practicing manners that would eventually take them into adulthood. Conversely, picnics in the park were for gobbling down a quick sandwich before roaring off to play on the swings. 

One thing that came through loud and clear in many of the pro-kids comments on my friend's thread and the newspaper article was the sense that young children can't control their behaviour, that it's wrong to expect them to be able to, and that it's everyone's right - theirs included - to be able to be in those environments and other people should just understand that. I have to say, from my own experience, that that's a load of bollocks. 

WHY should a cafe owner or other patrons have to put up with a child rampaging around what is, essentially, a dining space? Apart from anything else, there are safety aspects that no one seems to have picked up on. What if, due to the whistle incident at my friend's cafe, it had been one of the wait staff who'd jumped while carrying hot coffees...? They could have gone everywhere. I've nearly tripped over small kids who've appeared under my feet unexpectedly while I've been wending my way to a table. If I could pack quiet activities that my children had learned were part and parcel of an expected package of behaviour so that they had something quiet to occupy them, why can't other people? If I could teach my children in the first place that public venues like cafes required them to be considerate of the other patrons, why can't everyone else? It's not rocket science. Neither is it imposing something unreasonable on the child. 

I don't think that parents of small children shouldn't go to cafes. As the owner of the Newcastle cafe stated - she had no issue with having children in her cafe if they could stay seated, and not make a horrendous noise or mess. I'm with her. If you stop to think for a moment about how you'd feel if someone else's child was in your house and started upending salt and pepper shakers all over your table, or squashing food into your chairs, then the parallel becomes pretty obvious. It's not about the venue, or even about the other patrons. It's about what we teach our children. They're only little and at home with us for a very short time, after which they have to go out into the world and survive on their own. That means they have to be able to behave appropriately in a plethora of situations, and the earlier they start learning that, the kinder it is for them. Cafe trips - which can be short bites, after all - can be an enormously useful learning tool that don't have to turn into nightmares for parents, children, cafe owners or bystanders. Letting kids run rampant and unsupervised anywhere is just lazy, on the part of the parents, and not useful for anyone, particularly the children.

I had to come back to add a quick update - the story is growing. An English journalist has taken the story up in The Guardian - read the article HERE. The article is pretty straightforward. It's the comments - huge - that make for some very interesting reading. A lot of them seemed to me to be pretty extreme - and, more importantly, miss the basic point that the issue at the bottom of it all (as it appears to me) is the lack of consideration for others and basic manners that are absent in the case of some of the incidents that prompted me to write this post. NO ONE is talking about that - it's just lots of seemingly righteous indignation about the lack, or excess, of rights of today's parents of small children... Something is a bit out of balance there, methinks.

Parenting when you have a chronic illness

May is Arthritis awareness month in Australia. It's also MS, Lupus, Fibromyalgia and a host of other auto-immune diseases awareness month. Personally, I think it's reached a point where we have so many coloured ribbons, wrist bands and pins that most people aren't really registering any particular ones unless there is a personal connection, so I'm not sure just how much actual awareness there is of these different days, months, or years any more. Certainly, in Australia, auto immune arthritis - a major and debilitating arthritis that comes hand in hand with Rheumatoid Arthritis (NOT the kind your granny has...that's osteo-arthritis) is not well understood. Our TV commercials are flooded with ads for the latest miracle 'cures' for arthritis. Now and again, I get a text message or call from some kind and well meaning friend or family member to watch A Current Affair or some like programme, because some research about a new 'cure' is being aired. The current madness is the proliferation of websites and Facebook pages that tout the latest miracle diet that will cure it...

There is NO cure for Rheumatoid Arthritis. At this point in time, a diagnosis of RA means you have it for life.

I have RA. I was diagnosed about a year or so after No. 2 was born. I had gone back to work when he was 6 months old, as a chef in a large day care centre (a job I took just before I discovered I was pregnant because I was burning out fast in my previous chef job). I had a chorus contract with the local opera company for an opera being performed in a big arts festival, so the schedule was very heavy. I was still breast feeding, and this child didn't have even the remotest interest in solid foods. When I started to struggle, feeling very ill and achey, having difficulties with nappy pins, suddenly finding that the large knife I thought I'd firmly grasped had flown across the work kitchen, and a few dropped trays of food later, I headed to the doctor, feeling as if maybe it was more than just being a mother of a nursing baby trying to manage a household, an older child and two jobs... My GP fed me the only anti-inflammatory drugs and pain killers I could safely take while breastfeeding, and gave me a referral to a rheumatologist. Things got a little bit complicated and drawn out after that because I've never shown a positive rheumatoid factor - a marker in blood tests that is used to determine a diagnosis. Anyway, long story short, he diagnosed me with sero-neg RA, and that job came to an end as it was aggravating the situation. I had to wean No. 2 - a torturous experience, as neither of us was ready for that - so I could start some more serious drugs, and a new life stretched out ahead of me. 

At the time, it looked forbiddingly bleak. My then husband didn't handle it all that well. Illness wasn't one of his 'things'. I got very sick from the first drugs they tried. The strength of the NSAIDs (non-steroidal anti-inflammatory drugs) was steadily increased until they, in conjunction with some heavy duty prescription pain killers, started to give some relief. Then the rheumatologist wanted to start me on Methotrexate (MXT) or gold injections - the two bigger drugs of that era. I read through the potential side effects - long and short term - and was horrified. MXT is a chemo drug, used to fight some types of cancer - used in smaller doses for RA. I refused to take it. He agreed, reluctantly, saying there was no point prescribing something I really didn't want to take, and also, pain aside, there wasn't enough happening in my blood tests to warrant it medically. Things stabilised more or less. I had a huge full body flare that put me bed for six weeks when No. 2 was nearly 2. My mother and aunt arrived to manage the house so No. 2's father could manage his shift work job. Physically, I was kind of managing. Emotionally, not so well, and eventually had a breakdown. That was the last straw for my marriage, which crumbled at that point, so by the time No. 2 was 4, I was on my own with him and No.1, who was not quite 11. 

Very fortunately, my RA was quite slow moving. Over the next eighteen years, it got worse, but very, very slowly. I had ups and downs, flares, losses, pain, constant use of NSAIDs and increasing use of analgesia. But I was so scared of the side effects of the stronger drugs, I put myself into GP care so I wouldn't have to argue with the specialist all the time.

However, it was bad enough for parenting to become a whole new ball game. No.1 could remember me pre-RA, and struggled initially to deal with a mother who couldn't always run around with him as much as I had. I got a lot of, "But you're ALWAYS tired now...", which was hard to hear. I was. But I couldn't do much about it. Pain is exhausting. No. 2 knew no different. He was a bigger, heavier baby than No.1, so from the get go, picking him up and carrying him around was harder. He had to learn from a very early age, to get himself places - and he did too, rolling all over the floor from about 7 months. He crawled early, and was walking much earlier than No.1. And walking much MORE than No.1 did, because it wasn't a simple case of picking him up and carrying him if he got tired and we weren't using the stroller - he HAD to keep walking. I made games of picking up in their bedrooms, so that they learned to do it in a fun way. I had them bringing their own clothes to the laundry basket. I put chairs in the kitchen so they could reach the sink and learn to do their own dishes. We still did lots of play things together - one memory both have is the wonderful tents we made with sheets and the dining table, full of cushions and rugs, where we could lay and read stories, and they could play out all sorts of fantasies and keep themselves occupied when it was hard for me to get down there. 

I lot of people I know through forums online, and groups on Facebook, who have younger children still at home worry so much about what their illness will do to their kids. How much they might miss out or lose by having a sick parent. What they don't have to miss out on - which many kids do these days - is TIME with us. A lot of us are at home. These diseases can make it very difficult to hold down full time jobs with regular hours, because the diseases themselves don't behave well enough to make keeping to a regular schedule that simple. Getting stuff done around the house WITH your kids, which is what I did - with the bait being a game or treat, or some TV (my kids didn't get a lot of TV so that was a HUGE treat) when the jobs were done - meant that there was always something to be done together at any time of the day, and we could usually find a way to make it fun. No. 2 learned to count handing me pegs when we hung the washing out. He learned colours matching up socks when we brought it in to put away. He learned lots of maths learning to cook. I have a version of my muffin recipe written out in big print and simplified for him to make from the time he insisted on doing it "all by myself" - he was five. No.1 could put a whole meal on the table by himself by the time he was 12. They both learned patience, and having to deal with things being cancelled sometimes because I wasn't well enough. No.1 would put on hugely entertaining performances for me at the park when we went, because he felt, I think, that he had to make up for me not being on the slippery dip with him - a few falls and subsequent injuries clued me in very quickly about the ramifications of injuries to a systemically arthritic body.

These days, at 29 and almost 23, they are very self sufficient young men, who are capable of running their own households very well. They can shop and cook, clean, wash, do basic repairs on clothes, and No.1 irons a shirt better than anyone I know (a little help from being a RAAF cadet there...!). They have very strongly empathetic personalities. They 'get' it, when someone is ill. I don't see any scarring in them that I could lay at the feet of my RA. Other things perhaps - No.1 declares that I scarred him for life making him eat mushrooms as a small child...but you know what, I'm sure a spot of therapy could fix that! 

Compared to a lot of the young people I see around me today who have had far more done for them than my two did, they appear to me to be much better adjusted and prepared for real life. I'm not alone in seeing this as a phenomena - it's not just my skewed view as their mother. Hunting around online - since there's a dearth of actual press articles on the topic, which is what I usually use as a springboard for these posts - I found an Australian parenting site that had an excellent page on this very topic. You can read what that has to say HERE. It's specific to 'disability' but it holds true for people with chronic illness, as the nature of these diseases can result in considerable disability, while not being injury related as the 'read my story' example is.

Unfortunately for me, after some years of what I think must have been some kind of spontaneous remission, my RA is back with a vengeance. I hate to think how I'd have coped when the boys were little if it had been as severe as it is now. I'm on the 'grown-up' drugs now - I have no choice. It was that, or give up on walking. What I do know though, is that I wouldn't have done anything with them any differently. I'd have needed, even more than I did then, for them to be fully participating members of the household at whatever level they could manage at different ages. That's so for any sole parent, and it's certainly so when that parent has a disability or a chronic illness, and it still stands if there's a supportive partner there. Children are remarkably adaptable creatures. Particularly when they're young. They are incredibly accepting. They also LOVE being given 'grown up' jobs. 

One of my very favourite stories (which I may have shared on this blog before, I can't remember) about No. 2 was the time he insisted he could do ALL a load of washing - from beginning to end - by himself. He got it all sorted, he got it loaded, got the soap in, got it running and then choofed off to do something else while the machine went through the cycle. When it finished, he put his small chair up against the machine to get it all out and into the basket. Hearing a funny noise, I went to peep, and he was almost upside down in the tub, fishing out the little things from the bottom with a pair of tongs from the kitchen because he couldn't reach the bottom of the machine - entirely his idea. He did ask for help to carry the basket out to the line, and then dismissed me again, before dragging one of the outdoor setting benches underneath the line so he could reach up to peg things on. Up and down he stepped until it was all hanging. And again, when he brought it all back in later - neatly folded into the basket to save on ironing... He was 6. And walked SO tall the rest of that day because of what he'd achieved. So, had my RA been this bad back then, I think the three of us would have been just fine.

Don't ever underestimate your children and what they're old enough or big enough to do. They'll surprise you every day. And they'll teach you something every day. And they'll learn things every day that they'll take into their own lives, and possibly even thank you for the opportunity you gave them. Mine did.

For readers wanting a really good blog that is RA based - and has oodles about the day to day issues of living with the disease, including parenting, I recommend Arthritic Chick.