Shame on us all

I could rant and rave about the abysmal state of disability services in NSW. But you don't want to hear me do that, and in any case, here is a story that illustrates exactly what I mean. It appeared in the "essential" section of the Sydney Morning Herald on August the 23rd. I read it earlier this week, and it got me so angry, I had to read it out to Hubby - and have to share it here.

It's an uplifting story of a young woman named Ame Barnbrook with a passion for sailing She started the sport at the ripe old age of seven, and now the nineteen year old is competing in an important qualifying regatta in New York, one she needs to do well in to earn a place in the 2008 Paralympics in Beijing.

Ame was born with a rare condition (called phocoamelia) in which limbs do not develop fully. She has no arms and only part of one lower leg, a foot and three toes, which she uses for writing, picking up food, etc.. This hasn't stopped Ame to live a full life, living on a farm in rural NSW where her family runs Clark Bay Cottages accessible holiday accommodation, plays the trumpet ,and studies for a creative arts degree at Wollongong University.

The girl is clearly a star, she was awarded the 2000 Australian Sports Medal for her contribution to sailing and was a torchbearer for the Sydney Olympics. But the one issue that causes her most difficulty is, you guessed it, her independence, thanks to the dismal state of disability services.

Last year she got her first ever wheelchair funded by the government. She must have had one before, surely, but either her folks forked out the money for that, or a charity donated it to her. That does not seem right to me. No one in their right mind (not even PADP) can think she wouldn't need a decent set of wheels to get around. But that is not the worst of it.

At uni, she lives with three other students and gets 34 hours a week of government support to help her with daily tasks such as personal care, dressing, cooking, etc. She needs to pay if she needs extra visits, so she's been drinking less to reduce the number of toilet visits she needs. As her body doesn't have the extra skin on her arms and legs to cool off, this means she runs a risk of overheating and falling ill, as happened in her first few weeks at university.

She's had about 20 different carers in 13 weeks – how this is meant to work is a mystery to me. Surely a couple of carers dedicated to her is more efficient?. Her morning routine takes a while and involved some understanding of her condition – her skin cracks easily from sweating, so carers need to be careful and gentle.

In her second week at uni, Ame's casual carer failed to turn up, leaving Ame stranded in her bed until her father found her! Can you believe that!

Oh, and by the way, Ame would love her own (modified) car so her parents don't have to drive her around all the time. But she can't afford one – and there are no schemes available to help cover vehicle modifications. Too bad, eh?

This young woman should get all the help and equipment she needs to live her life to the full. She should not have to limit her drinks because she can't afford another toilet break. She should have dedicated carers who build up a bit of a rapport with her, get to know her needs and are able to help her more efficiently and effectively. She should be able to save up money for a car, and have it modified with government help.

She is representing her country in her sports, and her country is letting her down.

Our politicians tell us we've never been better of than now. That may be so, we certainly have plenty of material wealth compared to people in other countries and times. Yet as a society, we seem to care more about our flat screen TVs and our Blackberries than the needs of others. Dunno, but I think we may have our priorities wrong here. I read about Ame and the struggles so many parents have for decent equipment and services - including (respite) care for their kids with CP - and I feel ashamed for my country.

[Please consider helping Sailability or the Australian Paralympic Committee - or sponsor Ame's paralympic campaign - call 0412 459 845 if you can help]

His Own Bedroom

For weeks now, Possum has been wanting to have his own room back. You see in the old house, he used to sleep in his own room. Then his older brother, Mister Determined, went through one of those phases kids go through, where he had lots of bad dreams. Our kids don't watch much TV (some ABC kids and selected DVDs only) so they don't have a big "stock" of scary images. But Mr. Determined used to dream about a lady coming into his room screaming, so I think it's just a developmental stage kids go through. But enough DIY psychology from me for now.

The point is that we put the two boys in the same room to get that extra sense of security. It seemed to help – Mr. Determined knew that Possum was there, and if he had a bad dream, he would come and get us (you know, as if we wouldn't hear him, but that's not the point). They got used to being together, and it is remarkable how they manage to sleep through each other's noise. Possum gets these dreams where he babbles in an incomprehensible language and gets himself quite worked up. He does not seem to be fully awake, and only stops when we take him out of the bed and he wakes up. His brother does not wake up even by one of those episodes!

Still, Possum must have retained some memory of his own room, because he kept asking about it. It seemed logical that he'd get his own room in the new house, so that was sorted. Except that we decided they should sleep together the first few nights, to get used to being in a new house.

Last night, Mister Determined decided that he wanted to sleep in his own room – we're all having a bit of a cold, and Possum was snoring too loudly for Mr. Determined's liking, so he wanted to boot him out. Well, that was ok with us, if they were ready, so were we. Possum wanted this for a while now, and Mr. D, was the one holding things back. And here we were, as always being surprised by our kids, Mr. D. actually being the one asking to go solo. And guess what? Possum didn’t want to move out. He hollered and screamed, and did absolutely not want his own room. Turned out he was frightened. So, together in the room they sleep. For now.

Painters - just for a laugh

We're into our new house, and loving it! Once most of the boxes are unpacked, i'll take some photo's so you can see what the place looks like now. Here is just a quick snap i thought i'd share with you all (thanks, Sister-in-Law from the City for sending it to me)

Thankfully our painters did a better job than this - and although the kids suffered in the move, they came out of it better than these two:

Waiting and waiting and waiting

For all of you who are wondering, yes, we are all still alive and well, yes, we have moved to the new house, but no. we are still not on-line, nor do we have a phone number. For some strange collection of reasons, in this digital age, we have still not managed to get our house connected to the phone and internet. People may have walked on the moon, and we may live in a world city, but a simple phone and broadband connection seems beyond what the telco's can offer us at the moment. Still, according to Hubby, we should be back in the world of the connected sometime next week. We will still not have a landline (so mobiles only for now) and i will have to change my e-mail address (same username but bigpond instead of optusnet) but after three weeks of being incommunicado, that seems like a small price to pay.

So, for now, it's waiting waiting waiting....