Living with Heart

Parenting with Arthritis, Manifestos & a Benevolent Dictatorship

Parents are the bones on which children sharpen their teeth. Peter Ustinov.

This was written for me, my kids, my family. At one stage I had this quote on a sticky note on our microwave – it so resonated with me and HotY.

Parenting is like climbing Mt Everest – parenting with a lifelong painful disease is like climbing Mt Everest on a downward escalator, blindfolded with no oxygen. You don’t even know when you’ve reached the freakin’ top! It seems to be all just hard slog, fatigue and pain.

The only way that I’ve gotten through the last decade was by being organised, by choosing my boundaries really carefully, by constantly negotiating, by not sweating the small stuff and by making it very clear (like crystal clear) that HotY and I were in charge – totally. Our catch cry became “we run a benevolent dictatorship and we do not negotiate with terrorists”.

There were times we felt that our kids had been replaced by terrorists intent on destroying peace in our home. There were times we despaired that our kids would come out the other end – but they did.

That time Dizzle tagged himself on Facebook in a nightclub at the age of 16 – What.The.Hell. And then he had his fake ID next to his real one – really? As I cut his fake ID into 17 satisfying minuscule pieces I said to him ‘Are you seriously this unsmart! You’re making this way too easy for us’.

But it wasn’t easy. In no way was it easy. That was the front I had to put up. That was the face of ‘you’re not phasing me mate – give me your best shot’. That was me hanging on by one fingernail to being my version of the best parent I could be.

Each and every one of these confrontations sapped me of energy leaving my symptoms flaring. Pain, fatigue, stiffness and knowing it would still be there the next day. So how did we get through? Manifestos held the key for us.

If you go to the ‘WHO I AM’ section at the top of the page you can read about my parenting style of calculated neglect. My adult kids are the product of this – but there is a hell of a lot in between the beginning (sweet child) and the end (the self defining functioning young adult).

Manifestos – yeah the name gives it away…
On the fly – we had to create a way to parent that left no leeway for the kids to manipulate me when HotY was at work. The four of us wrote our first Manifesto when both kids were in High School. More commonly known as contracts – it’s a tried and true way to have a group agreement on behaviour, expectations and consequences. Basically an outline for living with each other in a – if not comfortable – then stable way.

We called them manifestos as a purely tongue in cheek ‘hats off’ to all those manifestos that came before. And being a benevolent dictator meant I was never going to be a Stalin or a Hitler – although there were times…

For us, these manifestos gave structure to after school hours, internet use and extra curricular activities. The four of us all sat down at the beginning of each term and would reassess and redraft a manifesto for that term. It would be written, edited and when all parties had signed then it was put on the fridge as a reminder to us all of the expectations.

The most vital point of this is that your teens need to have skin in the game. They need to have a say and be a full part of the process. In the same spirit we – as parents – needed to compromise. What the hell – stuff the small things, let them go. Gone – see you later. HotY picked you up from a party at 17 with the smell of alcohol on your breath – not touching that – got bigger fish to fry.

HotY and I would always have an end game in mind before we sat down to the negotiating table. There were issues that we were incredibly lenient about – we allowed consumption of alcohol while Gem & Dizzle were underage (within reason and in a controlled way) and we allowed boy/girlfriend sleepovers in Grade 12.

These turned out to be win-win issues because it provided a platform to discuss sexuality with both kids when the issue of sleepovers came up. If they wanted to have the sleepover then they had to be able to discuss contraception, respect for their partner, discretion, self respect, relationships ending and everything that goes with.

There were other issues that were lines in the sand. If either kid was not performing at school to the best of their academic and behavioural ability then the privileges started to disappear.

It was important at this stage to be realistic about what academic abilities our kids had. No use accepting C’s when the kid’s cruising and could be getting B’s. Also, no use expecting B’s when your kid is busting their guts to get C’s. Again, choose your battles.

These Manifestos were key in keeping everyone on the same page and minimising the after school angst that you all know about. I felt a real sense of calm if there was a Manifesto on the fridge – OK so that’s my uber controlling side showing again. But it was important for me if I was having a really bad pain day to know that there were still rules in place, homework guidelines for the kids to follow and a general direction.

The priority of these manifestos was 1. meeting school academic requirements, 2. meeting sporting commitments, 3.meeting family commitments and 4. controlling the often overwhelming social & social media lives that both kids had. This involved a massive amount of negotiation on social media use and a few ‘disabling of Facebook accounts’. By the way, do you know how hard it is to disable a Facebook account? It’s like you’re part of a cult and they won’t let you go. They.Have.You.

So that’s the framework of our parenting – and it sounds really cool. Like, I sound like an awesome parent and like the most benevolent dictator ever heard of. But you know that’s just the glossy colour enhancing filter I popped on. Reality always intrudes. Mostly, reality was named Dizzle – but Gem had a few spectacular appearances as well.

Thank you for reading this. Thank you for taking time to listen and to hear. Thank you for seeing my life through my joint perspective.


  1. Love this.

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