New Favourite

Everybody Counts has put out a video about the NDIS. Watch it.

This New Favourite is a little different from the normal musical ones, but a must watch all the same.

The budget is around the corner. There’s going to be a $12bn deficit – or something like that. Ructions are growing about how something like the National Disability Insurance Scheme will be funded.

As disability advocated and all-round legend Stella Young said in a piece on The Punch today, how insulting.

This isn’t about propping up a failing industry or pouring more good money after bad into a flawed and failing asylum seeker policy – situations where money is simply found, no questions asked.

I’m so done with people being self-centred and scared. Let’s be brave, let’s be daring, let’s do what is right.

 

Quite something

Today the Australian Parliament passed a bill that turns on its head the way this country has treated people with a disability. The National Disability Insurance Scheme (NDIS) turns our current system on its head, from one of ‘please Sir, can I have some more’ welfare to one which recognises them for what they are, people. It makes a vital change in the whole mentality around disability services by turning it to one of support being an investment not charity.

It will be a medicare type scheme providing a secure and consistent pool of funds for services and support to people with a disability.

Many people think that already exists.

No, what exists is a yearly allocation of funds. Those funds run out half way through the year? No matter, go onto the waiting list. But oh, yes there’s quite a few before you so you might not be successful next year either. But maybe the year after that!

That scenario was told to me at an early information session on the NDIS by a mother trying to secure an automated bed for her profoundly disabled adult son. Those beds cost several thousands of dollars. When she queried what she was meant to do the service suggested she approach a charity or maybe hold a fund-raiser. For her son’s bed.

The NDIS has been a concept kicked around our hallowed halls for 40 years. Something people have given lip service to but not much more.

I do not care what your political leaning, I do.not.care. but this Government is the first to actually action it. The first to say this is important, to say to the four million or so Australians who have a disability that they matter.

To grasp the scale of that, those four million people equates roughly to the population of Melbourne. Then consider the 2.6 million Australians who care for family members with a disability. Now you’ve got the population of Victoria.

As soon as you hear someone start to say how great it is but gee, how we can fund this, how we can pay for it I want you to tell them you’re talking about the population of Victoria. You’re going to turn your back on an entire State?

I want you to tell them that ALMOST HALF of people living with a disability in Australia live in poverty or very close to it.

Tell them the median income of someone with a disability is HALF that of someone without a disability and that even though the number of people with a disability grows, participation in the workforce for the sector has remained unchanged since 2003.

I want you to tell them that they are witnessing something of magnitude, something other countries will look to, a true moment in time for our political and social history.

It is the sign of a civilised society.

If we need to make some hard calls to make it work then that is what will be done.

Not because it’s nice, not because it makes us feel good, but because this is about ensuring no one gets left behind. That no matter what dodgy chromosome you were born with, or whether you can hear, or see, or walk or talk, YOU MATTER.

Now the scheme won’t cover all of us. It is designed to support the most severely disabled among us. I actually wonder if Oscar will be eligible but that is of little concern because there are so so many who do.

At the end of last year I spoke at length with Senator Jan McLucas, Parliamentary Secretary to the Prime Minister and for Disability and Carers. She’s been working on disability matters since 2004 when a raft of recommendations were made after a Senate Enquiry into disability services but even then she said they knew they were “tinkering at the edges”.

The NDIS looks at the individual and their needs over a lifetime. It gives families one point of contact and while it doesn’t sound like much it means families only need to provide the history once. It’s about investing in the individual. “We want families to stay strong, stay together and be supported as they want to be supported,” she said.

Some states – WA and Tasmania – actually have a model along those lines. Jog it in WA and Tas!

For the rest of us it will take some time with pilot programs starting in five states to get it underway. One of the most exciting aspects Jan told me about the scheme is that the system will be one that looks at the individual’s needs at that point in time. At the moment you have to re-invent the wheel at every milestone.

“If you’re a 6 month old child with Downs Syndrome the support is essentially to the mum and dad. Totally different to a 16 year old with Downs and then extrapolate that to when they’re 26. The focus on the person will be much more acute but we’ll also be viewing the person in their environment,” she said.

I hope people not impacted by a disability grasp the gravity of that.

ABC story here.

ONWARD!

 

 

Fifteen

Somehow we went from this:

Apparently I was 12 when I gave birth
Apparently I was 12 when I gave birth
Oscar at 1 month old
Oscar at 1 month old

To this:

Fine specimen of a teenager
Fine specimen of a teenager

Oscar was 10 days old when they told us he had a rare genetic disorder. We were having cuddles with him, something so precious in the Neonatal Intensive Care Unit, and I looked down at him thinking all the while, “I can’t fix this, this is in every cell, every structure, every drop of blood coursing through your veins”. I looked at the doctor and said, “But he’s perfect”.

There have been plenty of moments since then where I have felt just as hopeless.

The nursing educator of the unit, a wondrous woman, told me with a steely edge in her voice which meant business that if all of us had our genes tested it’d throw up some pretty interesting findings and to just raise him and treat him just as we would did we not know about his dodgy chromosome four.

And here we all stand, 15 years down. It’s so easy to look at Oscar – and indeed any person with special needs or a disability – as a series of deficits, a catalogue of failed milestones, of endless worry. But I’m still not sure how that actually benefits Oscar.

So who is this boy of mine?

His best mate is Josh.

He loves WWE wrestling, AFL, soccer, playing xbox and listening to music.

He is outrageously nosey and social. He knows all our neighbours – some of which I still haven’t met.

He has a heart as big as an ocean.

He’s good on the tooth.

 

For me, the greatest challenge is to not just parent the disability. It is so easy to fall into the functional – trying to bed down routines can take (and still are) years, the doctor appointments, the therapies, the assessments – that I forget the teenager wanting to listen to his music, hang out with his friends and flex the freedom I so easily bestow to his younger brothers.

How do you loosen the reigns when the potential for disaster is so great?

I know two families whose disabled children are now in their 20s and they tell me they’ve just had their worst year ever, both due to issues of mental health. In the Christmas break I witnessed Oscar having what I thought were fairly obvious anxiety attacks but he can’t articulate it and I don’t want to put words in his mouth.

Mental health issues and an intellectual disability. How you like them apples?

But you know what, it is what it is.

I have to look to Oscar – is he happy, is he stimulated, does he feel like a part of something, does he feel loved, safe and secure – and take my cues from him. And when I do that? I think we’re all doing ok.

In this house we might fall down seven times but we rise up eight.

Manchild
Ogga

 

Onward.

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.

Oscar

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 ever.single.day.

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.

 

Onward.

 

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?

 

Onward.