School of Awesome update

Facebook just threw-up a memory at me of Oscar from five years ago on the last day of his first year of high school at the School of Awesome and it made me catch my breath.

Oscar, end of Year 7
Oscar, end of Year 7

For much of this year – his penultimate year at the school – I have been boldly telling all that I thought I would be feeling far more fraught at the impending conclusion of his time at The Greatest School In The World, but instead felt the school had done such an incredible job at getting these kids ready for life outside school we’d be ready to say goodbye.

Yeah, I’m not ready.

I know I’ve got – we’ve got – another whole year to go, but I’m not ready.

At presentation day on Friday they announced the new school and vice captains and prefects. Kids in Oscar’s year. Oscar’s Year 12 year. They’re almost there and I’m not ready.

Oscar, prefect for 2016
Oscar, prefect for 2016

It was when Oscar’s classmates bounded up on stage with smiles spanning an ocean and all the students cheering so loudly that it all caught in my throat. On the one hand my heart was going to burst through my chest at this moment – these beautiful beautiful fine young adults having such a moment – – but on the other… Oh my GOD, we’re “those” families now. The ones at the end. The ones who have done the journey and I’m NOT READY TO BE DONE WITH THIS PART OF THE JOURNEY.

I went through my diary for next year, adding in dates from his school, including the Year 12 formal. I’m not ready.

These kids have been together for six years and going off that Facebook photo, the entirety of puberty.

They have been nurtured, challenged, stimulated and their world has been exponentially expanded. There have been annual camps, amazing excursions to plays, performances and exhibitions. They’ve been taught how to swim, how to cook, how to make things, how to read, how to write, and even how to talk and communicate.

Oscar has achieved more than I ever ever could of imagined and I’M NOT READY.

Everything feels so precarious and then I have to remind myself, it always works out. Oscar is a golden orb in this world who is a magnet to good people.

At presentation day last week the School of Awesome’s principal said: disability should never define who you are and friendships must be based on respect.

You know, everyone in Oscar’s world fits that bill.

It will all work out.

*whispers* I’m not ready.


Team Oscar: the year in review

I don’t think I could exaggerate what a tough start it was to 2012 for Oscar. Watching New Years Eve fireworks from a Mona Vale Hospital bed was not on anyone’s agenda and the fact we were back there for 12 days in April/May was a curve ball that took both of us months to recover from.


Do you remember the April/May stay? It was really the beginning of my downfall into the abyss that is chronic depression and anxiety. I keep going back to those posts because now? A mere seven months later? I am not there anymore and indeed am so far from that place I need to keep checking it ever happened at all.

But this year has been challenging. Parenting a 14 year old with an intellectual disability is HARD. There’s anger and energy – physical, emotional – that needs to be channelled somewhere, SOMEHOW, but as to where and how is something every parent of a teenager with a disability wrestles with

At Oscar’s School of Awesome presentation day last week the Principal spoke of exactly that. How once these kids hit high school you basically throw out all the strategies you used in early intervention and primary. It is still about communication and relating to others and all the rest but as a teenager? There is so much more at stake. Friendships come centre stage, how do you negotiate those relationships as well as all the hormones. There is violence and aggression. My GOD when Oscar loses it… the little guys are SCARED.

I mostly handle it badly. I mean, how do you treat someone like a teenager when they are essentially still a kid? How can I give him responsibility and rights and privileges when he can’t/won’t dry himself properly out of the shower. When every.single.night you have to oversee the going to bed routine or face a wet bed in the morning? When he can’t do up his school shorts or tie his laces?

I have had a lot of quiet despair this year about being Oscar’s mum. Knowing he’s at a school which comprehensively understands that makes it all a little easier.

Last weekend Oscar went to the Ignation Children’s Holiday Camp at Riverview. Four days, 30 kids with a physical or intellectual disability aged between 5 to 15. Free to families and sponsored by the Sony Foundation. Sometimes things come your way that restore your belief in the human condition to be nice to each other.

The most remarkable and heart-exploding part of all this is that students who have just finished Year 12 volunteer to be a part of it and are buddied with one of the kids for their entire stay. I’m presuming they’d already gone off and been carefree foolish teenagers on schoolies but I suspect these young adults are a bit of a special breed. Let’s say hello to Tom:

Oscar and Tom
Oscar and Tom

Tom just happened to be Head Boy at Riverview. He wants to be a doctor. Our HSC (school leaving results) came out today and he was in the honour’s list for five subjects. Yeah, Tom is probably going to be cure cancer, become Prime Minister and establish world peace. (Can you imagine being his parents. Dear GOD if they are not so proud of him their hearts explode daily… although I do wonder if he puts his dirty washing in the laundry and is, at least on occasion, a complete shit to his little brother.)

For four days he and Oscar hung out. They went on a ferry, which Oscar got to steer. They went to the aquarium, seemed to swim for about 10 hours a day, went for a ride on a Harley Davidson, dressed up as Batman for a disco and myriad other things. They made it to the nightly news:


Oscar came home with a scrapbook Tom had compiled for him which ended in a letter he wrote to us. Dude is SO going to be a doctor with THAT handwriting. This is a snippet:

I have discovered much about myself over the last few days and in Oscar I have seen the raw beauty of the human spirit.

From the roughest and most challenging of starts, 2012 came good.




I’ve got nothin’

There’s nothing left in the tank.

Much has gone on but I can’t find the words to tell it – I wrote a post yesterday about my health and even I was bored. Drugs meant to be helping making things worse but still needing what those drugs do to make me well. Meds for the head, the thyroid and insulin resistance don’t seem to really like each other. This last week I have been consumed with drug side-effects that leave me simultaneously jittery, on-edge and racing while so exhausted I fear I may fall down.

We’ve stopped one of the meds to see if it helps, but it’s the one that deals with my blood sugars and they need to be stable not just so I don’t develop diabetes but for mood stability. So I need to lose weight and lose at least 5kgs fast. Yeah, like I haven’t been trying to do that for forever. Starvation September is underway.

This week has been hellish. Oscar had a molar removed under a general on Tuesday and only today voluntarily opened his mouth to talk. Eating is still not on the cards and drinking water is still a battle. He’s been home all week. Just sitting on the lounge. Mute.

Can you imagine being in pain or just being traumatised and scared and not being able to tell someone, to explain exactly where the pain is, what sort of pain it is, when it’s worse, when it’s bearable?

I’m now worried he’s got a dry socket – there was moderate improvement today when he ate a weetbix with some stewed apple and told me it didn’t hurt – when tonight he had one spoonful of custard I’d made him and grimaced and asked to go to the hospital.

This morning we had his arranged-a-lifetime-ago endocrinologist appointment. Yeah. Awesome timing. It was fine – just a chat but – of course – the need for more bloodwork.

It seemed like the cruellest trick of all but I made the call. He hadn’t eaten or had anything to drink. We were at the hospital. With its own blood collectors. We were there. So bloods were done.

Can you tell my head and heart are so weary?



Inside the fishbowl

I was at a lunch on Friday put on by Oscar’s School of Awesome to celebrate women with a particular nod to those of us who are mother’s to kids with dodgy chromosomes or some other label that indicates their load will be a little heavier and wonkier than most.

It’s not something I dwell on that much any more but Friday made me realise that is simply because I’m now quite used to wearing the coat that is being mum to a kid with special needs. It was really nice being in a room packed with (295 no less) women and feeling celebrated and appreciated. It was not something I had expected.

Our Principal talked about a series of short films made by students two years ago and the sister project of a documentary following the students making the films. I know, SO post-modern. (I don’t even know what that means.) She described how, in the doco, families of the kids were also interviewed and that their honesty in what it was to have a child with special needs took her breath away. She explained that while she has worked in special education for more than 20 years it was this that truly showed her she (nor anyone else who does not have a child with a disability) will never ever understand what it is to be the parent of a disabled child. She then hijacked a staff meeting and made all the staff watch it. All the wondrous, committed, beautiful staff. She said the silence in the room was immense.

I can not tell you how validating that was to hear.

It explains so much. Why she is such a tireless advocate for our kids. Why every single member of staff at the school live and breath our kids and how to help them be the best they can be. Why that place is a place of daily miracles.

One of the things that came from the doco was the concept of being in a fishbowl, that you can swim around and see out and still be a part of everything but there is always this barrier between you and the rest of the world. Similarly people can see in and engage with you but still that barrier is there.

It is such a good way of describing my life since becoming Oscar’s mum.

I remember when we were first told of his diagnosis and internally railing against it. I did NOT want this for my life. I was NOT going to be one of those women, those mothers you see with a disabled child – you know the ones, they’re always so angry, and either grossly overweight or carnie thin, with bad hair, outdated make-up, cheap clothes and did I mention the angry?

I know, even I would have smacked myself back then.

But here I am, swimming around that god-damned fish bowl, regularly head-butting the glass, grossly overweight, no make-up, cheap clothes, dubious hair (it needs a cut) and on occasion very very angry.

I cried on Friday.

And then life went on.

Oscar went over to a friend’s place today to hang out. A first.

His voice started breaking this weekend.

He made me laugh. He made me cranky. He gave me kisses and cuddles. He asked me many questions many times over.

My life will never ever be as I imagined it. Nor his.

And that is OK.



What have I DONE!?! When good mums think they’ve gone bad

My heart is aching for Beth over at BabyMac at the moment. Her wee little moppet is recovering from having her tonsils and adenoids out and while some would say pfft, routine, I would say FUCK YOU! Any operation with a child which involves post-operative pain management is officially HELLZONE.

You see, you take your cub into a big scary place where you make them wear a dress with no back in it. You’re already on the downward slide in your child’s mental list of favourite people. If you’re lucky the premed makes them all woogily and so you don’t have to endure the (often multiple) attempts at getting a cannula in or the psychologically never-able-to-unsee experience of having to pin your child to a theatre trolley with them looking at you with pure terror as you try to stay calm and reassuring and ‘oh this mask! how fun! just take some deep breaths!’ This comes in a very close third to the awfulness that is seeing your child ‘go under’ when the anaesthetic starts to work which is a very close second to actually witnessing your child stop breathing and watching a resus team work on them.

Yeah, hospital with sick kids. Such sweet sweet memories.

Anyway, Harper’s not opening her mouth for anyone or anything bar the medicine (small mercies) and some juice. It was this fact and a photo of the gorgeous cherub that bought all the memories flooding back.

It started out as one of Oscar’s routine dental procedures but some 2 1/2 hours later the dental surgeon came out saying cheerily, ‘it all went really well, we only had to extract five teeth.”


The extent of preparing Oscar for this had been something involving a hand puppet of a tiger and a toothbrush. Monumental fail.

The poor kid had gone in feeling absolutely tickety-boo to then wake up in recovery, in a dress with no back, a cannula in his arm and a mouth full of blood and stitches. To say I was the bottom of Oscar’s barrel of awful would be showing a generous heart.

I actually think he went into shock. He didn’t talk, eat, open his mouth for days.  To force in some water through a straw was akin to NATO negotiations to get humanitarian aid into Homs, borderline fruitless.

My recollection is the surgery was a Friday and he didn’t talk until the Wednesday, but that may well be traumatic memory embellishment.

I was beside myself. We’d broken him. There it was, in cold hard brutal truth before us. We had broken him. I cried and cried, buying him ridiculous treats and presents he’d barely even acknowledge. He’s just silently move about the house

There have been a couple of incidents in Oscar’s life which have rocked me, made me question why we did something or why we were doing something, made me feel the lowest of low because far out, here’s a child already carrying a heavier load of Unfair than anyone else and we just go and throw another biscuit of doom onto his cart.

But then the darnedest thing happens. They get better in their own cotton-pickin’ time. Whatever the procedure you’ve put them through damn well goes ahead and achieves what it was meant to (normally) and the self-flagellation abates ever so slowly.

I will never forget the morning after that hideous dental disaster when he came in, stood by my side of the bed and said, ‘Ogga eat?’ It’s something Oscar utters a minimum of 50 times a day but that morning, that day it was the sweetest of sounds I’d ever heard.


Thinking of you lovely lady, it will get better.