Tag Archives: intellectual disability

NDIS – time to lead

In Australia there is this marvellous political construct called COAG – the Council of Australian Governments. It’s meant to promote policy reforms which are “of national significance or need coordinated action by all Australian governments”. In reality it is a stoush. A chance for state and territory premiers and chiefs to prance and preen and belly-ache about lack of money, favouritism or lack thereof and so on and so forth. It meets once or twice a year and yesterday’s gathering was to advance the National Disabilitpy Insurance Scheme. This is a great 10 point document to tell you what the NDIS is and why we need it.

In brief the NDIS is about establishing a Medicare type scheme which would provide a secure and consistent pool of funds for services and supports to the disabled rather than the existing system where there is an annual budget allocation which is never enough and always runs out.

It reframes support to one of investment rather than one of charity.

It places timely intervention and appropriate aids, equipment, training and development as equal investment in an individual’s capacity rather than welfare.

It recognises that  disability is for a lifetime. It looks not just at the individual’s needs now but over their lifetime. For example, you’re profoundly disabled? So you’ll need a wheelchair, ramps, a modified vehicle, a hoist for getting in and out of bed, on and off the toilet, in and out of the shower, on and off the lounge. Right, let’s get that sorted as you are a human being with rights and to not have those things is not acceptable in a civilised society. OH, you’re now 10/15/20/40/OLDER so you’ll need a bigger wheelchair, your transport needs may have changed, an adult hoist/bed etc – let’s update your equipment.

At the moment all of that is in the hands of the family. And if you miss this year’s funding allocation for a bed that can be raised or lowered? Well, you can raise your own funds, go to a charity or just wait.

And you can do that every single time your child grows out of their equipment.

Perhaps you have a highly autistic child or maybe you’re like Oscar with a moderate intellectual disability but relatively mobile and  highly social? Well, you need time with your peers and activities just like any other person your age. On top of that, your unique circumstances mean your mum or dad or carer need some time out. Some time to recharge the batteries and just live for a few hours without the pressures of being the whole world to an individual dependent on you for just the most basic of human functions.

Well you can now ring around, ask others, chance upon some respite services in your area but they only do an intake once a year so your name can go on a wait list for the following year but don’t hold your breath because there’s a big cohort of kids moving up from the primary school group to the high school group and there won’t be any spots unless someone moves out of area.

And on and on it goes.

Having a disability in Australia makes you a second class citizen. FOUR millions Australians have a disability. That’s roughly the population of Melbourne. Then there are the 2.6 million Australians who care for family members with a disability. We’re now looking at the population of Victoria.

Now wrap your head around this cold hard fact:

ALMOST HALF OF THOSE WITH A DISABILITY IN AUSTRALIA LIVE IN POVERTY OR VERY CLOSE TO IT.

In Australia if you are born with a disability or become disabled at some stage during your life you will be pushed to the periphery of its society. You will be forced to look for charity for basic needs in coping with that disability. You will, in light of all this, be punished for being disabled.

People with a disability and their families currently pay a price for disability in the form of social and economic exclusion and a massive lack of choices.

Way to go Australia.

The Productivity Commission report into establishing an NDIS made the very salient point that yes, the NDIS will cost a lot BUT – the overall economic benefits are likely to exceed scheme costs by facilitating economic and social participation by people with a disability and those caring for them.

Imagine that – your provide the additional support to those who need it and low and behold they become functioning members of the community rather than a drain on it. GO FIGURE.

Ironically as state governments cried poor in failing to support and instigate NDIS trials at COAG yesterday, they are staring down the barrel of an economic crisis in the disability sector. The number of people with a disability is rising, someone is diagnosed with a disability every 30 minutes in Australia, while the number of people willing and able to offer unpaid support is falling. The cost of that? To governments? MASSIVE.

So they have a choice. They can wear the massive costs of having a cohort of their population desperately needing resources, not getting them and therefore not able to function in the society OR they can chip in, develop a scheme that empowers and enables that cohort to then have those people able to contribute.

Yesterday there was such an opportunity for our elected leaders to stand up and say, this is important, this must happen, let’s make it happen. Instead they played politics and through their actions – or lack thereof – showed their true colours.

I have moved through incredulity and anger and am now just sad. I despair, truly I do.

 

Onward.


Thin line

I dumped my brain on here the last few days. I haven’t done that in a while, I try not to. It makes people feel uncomfortable. It makes me feel weird.

I want people to understand that the little things each day shit me just like the next person but I also want none of us to forget that while we bitch about picking the slow queue again in the post office or the idiot driver who pulls left to turn right (what the FUCK is wrong with people) there are so many bigger fish to fry.

Sure, I spend a large portion of my day trying to ignore the worries and stresses I have about Oscar.

Sure I, as a mother, spend an inordinate amount of time worrying about my boys, particularly Felix as he hits high school and enters a decade of becoming a man all while negotiating puberty, school work, who he wants to be, believing in himself, becoming more responsible, comprehending consequences on a far grander scale that what happens if you flog your brother again, having fun.

I didn’t really have fun as a teenager, my life was a pretty intense one with mum working her arse off and dad being absent but expectant all at the same time. When it all went pear shaped one of my aunts told me I had to grow up now, be responsible for mum, to be sensible and to help. Having fun and being a ‘typical teenager’ doesn’t really come into action when someone says that to you when you’re 11. I was the good Christian Girl going to not one but THREE youth fellowships (really covering all bases) and while it truly did get me through a lot of my teenage rage the pay off was guilt. I look back and think much of my adolescence was spent holding my breath. For the next bad thing to happen, for not being good enough, for letting people down.

Where do these emotions come from? I think they largely come from self, I can see it in Felix, but they are then compounded by external factors.

Fast forward a few years.

Fast forward to now.

I just can’t shake this feeling that I have done it all wrong. I mean, who the hell at almost 40 lives with their mother? Who at almost 40 has to ask for a hand-out from their in-laws to pay for car repairs? Who at almost 40 reduces three of their children’s bank accounts to zero to pay for car registration?

 

I’m doing it all wrong.

 

Where did I imagine my life to be at this stage?

Well, not living rent-free with my mother for one.

Not living pay-packet to pay-packet for another.

Not having to accept charity from friends.

 

Someone said to me the other day that accepting charity from others, help from people is about being humble and that having humility is the hardest virtue to learn.

 

In the last two weeks people have:

– looked after and cared for my children unconditionally

– picked up my kids from school and pre-school and looked after them for me without question

– texted me to say they’re having my kid over for a play, no discussion entered into (so so good)

– dropped off food parcels for my family including homemade dessert

– dropped off food parcels for me, to me, in the hospital

– brought me chai lattes at the hospital and hung out to talk shit and make me laugh

– taken my kids to and from footy practice

– dropped off a toiletries and cleaning products care package – anonymously. With one of those double Cadbury Family chocolate blocks in it. That I’ve hidden. And won’t be sharing. Maybe.

– sent us a crate of Gourmet Dinner Service meals that I keep looking at and bursting into spontaneous tears over. Because re-entry into family life after 12 days at hospital is just as hard, in some respects, as 12 days in hospital.

– sent me texts and tweets and Facebook shout-outs telling me you’re thinking of us, willing us a swift trip home

 

I have been humbled by all of it. Blown Away. Driven to tears at people’s love for us, for me. Bolstered by people’s generosity of heart and spirit.

I know we are blessed, that I am blessed to have a world so full of love and friendship. Plenty have pointed out to me they wish they had family and friends to help them out in times of need (subtext I am so lucky) and they need not fear me not realising, appreciating and being infinitely grateful to have so many holding on tight to the safety net under me, ready to catch me as I fall.

I know everyone has wanted to do this because I know when I see a friend struggling I want to do something, anything to ease their burden just a little.  Sometimes it’s words, sometimes something I’ve made, sometimes my hilarious company. (Remember when I was funny?)

 

So why is it sitting so uncomfortably with me?

Somehow all this makes me feel like I’ve failed.

Having to accept help is about having failed, of not being able to manage, of not coping.

I feel I’ve let everyone down.

That I have done it all wrong.

There are so SO many should haves swirling around in my head.

 

We have some family friends who are the most beautiful people in the world, but bad things happen to them all the time – a child off the rails, poor health, financial stress. There is always a feeling of unfairness when they are talked about, that they don’t deserve all this, why does it happen to them?

I do NOT want to be that family people talk about.

And yet I totally know we are.

I DO NOT want to be the sympathy card. The “Poor Kim”.

SO I just want you all to know I won’t let you down.

I will try harder.

You will not have to keep picking me up  or carrying me.

I will not let you down.

I will not fail.

 

Onward.

 

 


The cold hard truth

Well that last post was a bit of a doozy wasn’t it. Sorry about that, I think we can call that “the breaking point”. I guess the rather obvious subtext of it is that this shit is hard. Then we move into a holding pattern for a while until the next drama unfolds.

Life with a child with special needs – be they physical, medical, intellectual or all of the above – is bloody hard.

Everyone nod sagely at that. Offer a ripple of how amazing we are to rise to each day, an empathetic “I don’t know how you do it”, the occasional “God only gives you what you can handle” from which you should be grateful you walk away without multiple stab wounds from a splintery stick lined with rusty nails.

The most unrelenting part of it is the cold hard brutal truth that it never goes away. Every day this is what, for me, having a disabled child entails:

  • are you going to wake to a wet bed,
  • a random epic melt-down triggered by who knows what,
  • the daily battle to put clothes on,
  • discovering yet another dawn raid of the cupboard for inappropriate breakfast items which totally decimates the weekly shop you did to.the.dollar. for school lunches, afternoon teas and so on,
  • waking up at 3am when they’re trying to sneak in some Xbox,
  • realising they’ve padded next door, outside, in their pyjamas, at 6am and are just loitering around on the corner,
  • the ongoing issue of wiping and I’m not talking benches,
  • the complete incapacity and/or unwillingness to dry themselves after a shower. I now have a child with a man penis who still needs help (but doesn’t want it but can’t do it himself) getting dry after his shower,
  • navigating puberty with a moderate intellectual disability,
  • is that left foot rolling in again, no not really, oh yes it is, will it need a splint, do we need to have surgery again, we need to see the specialist again,
  • anxiety with a moderate intellectual disability,
  • how to occupy them beyond the realm of Xbox and stalking the neighbours,

and on it goes.

Then there are the big picture worries you basically ban yourself from thinking about – work placement, housing, relationships, a happy and fulfilling life.

Stuff just goes wrong with these kids. Their systems are compromised, they get sick, they get inexplicable ailments, they need surgeries and ongoing interventions and regular reviews. It is tiresome, exhausting and emotional (not to even mention the costs involved) to do this with different groups of people over and over again.

You find that you stop seeing their character and start focusing on the mechanics of it all – toileting, anxiety, boredom. It takes you by surprise when doctors, nurses, friends, neighbours all talk about your son so positively. About his sense of humour and gorgeous nature. Sometimes all I see is the fifty million questions asked over and over, the refusal to dry himself after his shower (now probably the cause of the cellulitis. I KNOW), the constant falling asleep on the lounge and then agro lashing out when I try to move him on to bed and so on and so forth.

It takes other people getting upset at seeing your child have bloods done to remind you it’s OK to feel about all this.

This is what it’s like to have a child with special needs.

The way our society works though does not make any allowance for this reality. We need me to be working to be able to feed, clothe and educate our children. We need two incomes to be able to give them experiences and to be able to cope when and if something goes wrong.

There’s no way you can have two adults working when you have a child with special needs. If you do then, well, RESPEK.

So then the self-flagellation begins – he was your first so why did you have any more, you knew it’d be expensive having lots of kids so why’d you have so many. THIS IS YOUR BED.

But then I think we did not choose for Oscar to have a dodgy chromosome, cerebral palsy, a moderate intellectual disability or a penchant for foods high in saturated fats to be consumed before dawn. So why then are we, why is HE, punished for it?

Services and support for the child AND the parents is imperative. I have it because I have a coherent voice, I tend to like being shouty, a clanging symbol. But for every one of me there are 1,000 others without a voice and it’s just not good enough.

This post wasn’t meant to be about the importance of the National Disability Insurance Scheme but it seems important to mention it here. We, as a nation, are at a point where we can truly ensure no one gets left behind. Where for something as simple as splints for Oscar’s legs do not involve me having to go to multiple agencies with my hands out saying, “please sir, can I have some more”.

I escaped the hospital earlier this week with Chef to go to the Sydney rally to support the NDIS. Our Prime Minister was there, I saw her and her remarkably cute security protocol (well played Julia, well played) for the first time ever.

I don’t care what your political leanings are, but this woman, despite every spike laid on the road before her, has put the NDIS on the table, she has made it happen (from next year in fact). It was flagged by Menzies as a necessity FORTY years ago and she, SHE, has been the one to make it happen. I can’t help thinking, ‘trust it to take a woman to make this happen.’

So yeah, my life is quite a stressful one. I am feeling it keenly at the moment and it does not shine a light on the best parts of my character. Don’t hold it against me.

I know many of you want to help us out, please be assured that being here, reading this, getting it, holding it in your hearts, standing up for someone or fighting for what is right for people whose voice is small or broken is enough. It is enough.

Onward.


Day 10


Yesterday was bone and CT scans and a drug reaction.

Today was a new cannula.

Getting a cannula – hereto known as a cuntula – into a kid with bad veins trumps pretty much everything.

Sure letting a kid die from an infection is negligent but getting a cuntula in is cruel.

 

I do the tough love thing for about 80 per cent of it because Oscar’s protests are loud and – at 68kg – now quite physical. The kid can make quite the attempt to flee.

The other 20 per cent I tell him what a champion he is and that yes it hurts but it will soon be over and how brave he is. All done with the internal monologue of DON’TCRY DON’TCRY DON’TCRY.

I don’t know, maybe it was because it was Day 10, maybe it was because it took a couple of goes and eventually had to go somewhere there hadn’t been any numbing gel or maybe just because it sucks but I came a bit undone after this round.

When you do this often enough you do go onto auto-pilot. A friend was here the other day when there was a very poor attempt at taking bloods. Her reaction made me realise, remember, that this is a big deal, that it is traumatic, that it really is shitty.

 

Mum arrived just after it was done giving me time to flee for just an hour.

I got in the car, rolled a cheeseburger and chicken and cheese because if there was ever a time for comfort eating this was it.

The eyes were damp and my heart was still racing.

I could feel the shell cracking. Fast.

I got home, discovered we’d run out of toilet paper and washing powder, that a friend from Grover’s pre-school had not only made the boys a curry last night but also apple crumble. She made my boys apple crumble.

Generosity of heart is all around me.

 

We missed an appointment on Monday at Sydney Children’s so I had to email and fix that. I asked them about seeing the orthopaedic surgeon who did Oscar’s legs in 2010 at outpatients because we can’t afford to see him privately. (The reason I hadn’t made that follow-up appointment with him after the first incident and which if I had may well have seen us not end up back here.)

I also expressed my concern about Oscar’s left foot and that it is starting to return to the position it was before surgery and that I think he may need an AFO (splint) for that leg at least – and that we need to do that through the hospital too as there’s no way we could afford to do it privately.

We’re now four months behind in our private health insurance payments.

I’m getting really adept at this hand-out, “please sir can I have some more” routine.

Our awesome contact at Children’s got back to me, as did the person he’s referred me to re appointments with the ortho and re splints.

That’s when I just threw my phone down and just gave in to the big heaving sobs of sadness and rage.

We can see him that way but only on this day, there’s a wait-list for AFOs at the hospital so maybe approach our contact at the Cerebral Palsy alliance and then they can put us in touch with a funding body to access to then get an AFO through them but we could do it through the hospital but but but…

E-FUCKING-NOUGH.

I still have to get a new referral for Oscar to see a paediatric endocrinologist as the one we were referred to is no longer there.

I still need to reconnect with The Cerebral Palsy Alliance to get a speech therapist back on board so we can be eligible for a grant to trial a speech device even though we’re already talking to the technology team at CPA.

You want to know what it’s like to have a child with special needs?

Relentless.
Constant worry.
NOTHING being easy – be that accessing services, finding schools, ignoring the idiots

Having a disabled child means that unless one of you is earning squillions, you are pushed further and further to the periphery of society so you have no choice but to beg and appeal for charity, thereby feeling beholden and worthless.

I’m so sick of feeling so fucking downtrodden, of falling down and rising up. I just want to lie down and go – TIME OUT. DO OVER. MAN DOWN. CODE RED.



You gotta hold on

We’re officially on Day 9. NINE.

I’m so tired.

I just don’t know what else to say.

People have more than stepped up – friends collecting my children from school and pre-school, taking them to and from football training, cooking meals for my family, bringing me food packages – it has made me cry and just taken my breath away.

I realise one of my survival mechanisms is to be incredibly snarky in my head about the many many idiot parents that walk this earth and happen to cross my path in the paediatric ward of Mona Vale Hospital.

This doesn’t sit well with so many people complementing me on my grace under pressure and good humour through hard times. I mean, I did the lean down hissing yell at Oscar in the shower the other day about how selfish he was being. Mother of the Year thank you and good night.

Today we ruled out the infection being in Oscar’s bones or the hardware in his feet. This is massive. Of course it doesn’t answer why or where the hell the infection has come from but I’m taking a victory where I can snatch one.

 

Last week I discovered I had been selected as a finalist in the Australian Best Blogs Competition for 2012. This is my second year as a finalist. It is basically the only award that counts for me – it recognises my writing.

And here I sit, the words not coming. I have six half written posts on my laptop. I never do that.

And now, the words, they will not come.

 

Let’s look at some pictures.

This – Friday Night Lights – has kept me sane this hospital stay. Tired but sane:

I almost walked away from the series a couple of episodes in on Series 2 – so much bad stuff was happening, it was unrelenting and stressful. I got through it and am now just into the fifth and final series. I can’t tell you (and nor can I explain) how invested I am in the characters in this show. It baffles me.

But everyone needs a Coach Taylor in their life. And a Tami Taylor for that matter.

On Saturday I escaped the hospital and learnt I could still use the monkey bars. No really, I did.

I even had to buy gloves for it. Yes people, I own gym accessories:

 

Finally, I’ve decided I want to be when I grow up:

 

Hopefully the words will start flowing soon.

 

Onward.

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