Open Day and Fair

Last Sunday, the boys' school had its annual Open Day and Fair. Here are some pictures taken on the day. You will notice the boys' absence. That's because we barely saw them. After the formalities were over - for them that meant singing in what's known as the Infants Choir - they ran off. Hubby got them an all day pass wristband to the rides and off they went. Both boys spent the entire day running around with friends, visiting us occasionally to ask for some junk food or lunch. This is a new experience for us, we're used to Beaver hovering around us. Seems like he's finally confident enough to go off on his own. Wonderful.

Boo Boo's favorite event of the day was the Pony Ride (she had 3 goes!) closely followed by the Baby Animal Farm. And while she enjoyed the baby farm animals very much (especially the feeding) she emphatically did not like the reptile man with his snakes and crocodiles (which Possum off course, absolutely loved).

The Infant's Choir. You can find Possum in the first row to the left, and Beaver hiding in the second row, just left from the teacher who directs the choir.

Firefighters Boo Boo and Jess hard at work.

"Me more. More."

A Thread of Grace, by Mary Doria Russell

Dave Hingsburger, over at Chewing the Fat, initiated a trans-global book club which reads and discusses books with a disability theme or moment. Here is my contribution to the first book we all read, Mary Doria Russell’s A Thread of Grace.

I must admit, I probably wouldn’t have picked up this book if Dave hadn’t recommended it. You see, I’m living in Australia, come from Belgium but am originally of German extraction, and we’ve had quite some family history to deal with. My paternal grandfather had two young kids and no work – so he joined up, and got work instantly. He was sent off to war and never returned. His brother did, but blind and missing one arm, his face full of dark shrapnel patches. My maternal grandfather was drafted into the army, and taken prisoner by the Russians; he spent many years in a POW camp and after the war, was told to walk home. My husband’s grandfather was Dutch. He was taken by the Germans to a work camp, and he too, had to walk home back to Holland. My maternal grandmother, my aunt and my mother were Germans living in Holland at the time of the war, and spend years in a Dutch camp (with other Germans and Dutch collaborators). My grandmother was placed in the women’s camp, while her two young daughters were in the children’s’ camp. War touches everyone, regardless of their guilt or innocence, and the repercussions ripple through the generations. War destroys lives and souls, and is terrible for the individual people involved, regardless which side they are on. As a result, I’ve had a belly full of the Nazi period and I tend to avoid it as the plague.

This bothered me while I was reading the book. While I think it was overall a good read (boy, I definitely wish I could write like that) I kept struggling with the big politics of the book. My mind started wandering when we got into the various partisan factions, the troop movements, and all that. The historical detail was stunning, but at times I found it a bit off-putting, and I kept wanting to speed-read over those sections.

What hooked me was the individual level. It was riveting to read how these big international events affect the lives of ordinary people, people who had no great plans and ambitions, yet were thrown into total disarray. They were forced to move to different countries, learn different languages, pretend to have different religions, and do extra-ordinary things.

As such, I liked the character of Claudia very much – and that’s not only because I hail from the same city. I liked her transformation from innocent, lazy, self-indulgent teenager to cantankerous old woman via peasant and partisan.

But, for the purpose of this book club, let me come to the scene on page 287-291, most defiantly one of the best scenes of the book – and one that touches me personally.

I have to admit that I found this scene a bit forced at first. I mean, what are the chances of a Nazi doctor who was actively engaged in such gruesome events ending up sheltering with a group of partisan women in Italy? My intellectual side kept mumbling, “not likely”.

My emotional side, however, was enthralled. There is so much going on here.

We get the juxtaposition of the loving mother versus the distanced physician. The mother sees a child “She wasn’t a tragedy. She was a little girl. She was my daughter. And she loved to dance”. The doctor sees inferior people "trapped for years in a life of unspeakable, inescapable pain.“

It’s exactly how I end up regularly defending my children and my life. My kids have a disability. They are my kids. They are not a tragedy. The tragedy is the lack of equipment, the lack of services, the under-funding, the debt we go into to obtain the things the kids need. My life is not that of most mothers. But it’s not a tragedy, nor are the kids, and nor is the disability as such.

Doctor Schramm passionately believes that the world would be better off without what he called “mongoloids and cretins”. Yet with all his scientific approach he does not see that at the very core of this belief lies his guilt over his abandoned, unloved disabled sister. Sibling guilt mixed with pseudo-science into a deadly cocktail of arrogance:

“mothers like her – they think only of themselves. (…) They refuse to see (…) [t]he wrecked families, [t]he broken dreams, the teeming institutions, like satanic zoos, filled with very sort of biological failure. (…) Those children are like a bomb (…) that kills the whole family, that breaks everything in a home! All the mother’s time and attention goes the weakest. She deprives her other children of her care. She neglects also her husband. It is natural that he should leave! And for what? A child who will never contribute anything to society!”

It comes here in the character of Herr Doctor Schramm, a German male, Nazi scientist who did medical experiments on these “undesirable” people – it doesn’t come in a more extreme character.

Yet the scariest thing about Schramm’s opinion is how much of it is still alive and well today. How close is current medical genetic research to aiming to improve the human race? How often do you still hear so called “facts” about people with a disability banded about without any basis in reality - such as when Schramm states that someone with Downs Syndrome never learns to control their bowels, “a proven fact!”.

And when Mirella tells Schramm: “Doctors. (…) You look at people for ten minutes, and you think you know everything about them!”

Some of the medical appointments I sat in came to mind, and I fear that despite years of scientific research and improved knowledge, doctors’ preconceptions have not evolved that much….

At the same time, the accusations of Schramm stung. I am the mother of three children, two of which are disabled. I do fear, every day, that my middle, neurotypical child, gets less of me. While I certainly think my other two don’t contribute to society, I think every parent feels guilty at times for not spending enough time with their kids – or feels guilty for favouring one child over another. This is amplified in the case of a sibling of a special needs child – as much as I worry about my disabled kids, in many ways the one that causes me most headaches is the non-disabled one.

Before I finish, I must point out that two sentences in the novel have stayed with me since I read it. Interestingly, both are uttered my Mirella. On page 289-290 she is quoted as having said “The world is filled with unreasonable hate. What’s wrong with unreasonable love?” Another thought Mirella often expresses is “If we can help, we should help”. I think about there words pretty much every day. And when I can help, I try to stop in my (busy) tracks and help.

So, a book I would not normally have read, has shifted things in my life. Thanks, Maria, and thanks Dave.

On a minor note, I felt a bit cheated not finding out what happened to Liesl and Frieda Broessler. All the other characters were tied up nicely at the end of the story – we know who dies and who survives. But dit the Broesslers ever find out what happened to Steffi, and did they survive?

Beaver is writing!

This weekend, we watched Curious George. It's a movie about a little monkey who gets lost in the city. There he gets into all sorts of mischief and adventures, including being chased by an angry man. Possum, of course, was frightened of the latter, and did not see all of the movie. Beaver, however, was enthralled, and wrote the story down.

If you know he writes his "e" upside down and put some letters in the wrong order, can you see the story?

Luxury Car Tax

Earlier this week, the Federal Government (newly elected at the end of last year) announced its first ever budget. Overall, it seems pretty good. But as far as I'm concerned, there are two major flaws with it.

The Government will increase the tax on luxury cars (defined as cars costing over $57,000) from 25 to 33%. Sounds reasonable. I'm right behind this initiative.

But - hang on a minute…

We have three kids. Two of them have a mild to moderate physical disability with one of them needing a wheelchair. They are gorgeous kids, not very high maintenance, and they will one day be productive, tax paying members of society. But they need some extra help, and so far, we’ve footed most of the bill.

We had to buy a more accessible house and significantly modified it at our expense. All in all, we'er about 300,000 in debt when all is said and done. Our daughter is too young to qualify for NSW government assistance for a wheelchair, so we have to buy it ourselves. And we need to buy a new car that can be converted to be wheelchair accessible.

There are only a handful of cars that can accommodate our needs. There is no GST exception, no tax deductibility, on either the purchase of the car or the conversion (which costs around $25,000).

Many of the cars suitable for a wheelchair conversion, especially those that hold a family with a disabled person cost over $57,000 - which makes them “luxury cars” and will now be hit by an even higher tax.

As said, I am totally in favour or a high tax on luxury cars. But I’m not exactly buying some snazzy sports car, cool Mercedes or fancy Lexus 4WD here but a vital piece of equipment for our family.

Yesterday Mr. Rudd promised that parents of disabled children will not be hit by the rise in the luxury car tax and said there was already a range of exemptions from the tax for people with disabilities.

Now, I checked the Australian Taxation Office website for the details on these luxury car tax exemptions for people with a disability.

Does Mr. Rudd know these apply only if the person with the disability is the driver or if the car is “specifically fitted out for transporting disabled people seated in wheelchairs” - with the definition of disabled limited to those who have lost limbs. Unfortunately (?) our young daughter has all limbs intact and will travel in the car (not drive it), with her (empty) electric wheelchair strapped in the back – a safer option for those who can weight-bear enough to transfer in and out of a car.

This must mean Mr. Rudd either does not know his own government’s regulations – or his he going to overhaul current fiscal legislation applicable to those with disabilities?

Please, Mr. Rudd. I voted for you for a better future for my (disabled and non-disabled) kids. Don’t disappoint them.

Oh - and the other issue I have with the new budget? You'll have to check out my other blog...

Fall-athon

Two weeks ago, the kid's school held a walkathon. This meant the kids got to walk around the Oval oppostite the school and collect money from family-and-friends sponsors for each lap completed. The money raised goes towards Smart Boards for the new classrooms being built at the moment.

I was a pretty proud mum. Possum did 21 laps (pretty good for a 5 year old boy) and Beaver did 11 (pretty good for a 7 year old boy with CP).

Then, yesterday, the walkathon came up in our chat. Beaver mentioned that walking is easy for the other kids but not for him. He noted that for him, falling is easier. So I joked that we could do a fall-athon – and he thought that was quite funny

So now, we’re doing a fall-athon from now (well, yesterday) until the school Open Day in 2 weeks time. For every fall I will give him a dollar, and for every big fall (meaning, one with blood) he gets two dollars. Yesterday, he had 8 falls, one bloody. He will personally deliver the money he raises to the walkathon tally.

In my Shoes

Those of living in Australia might have seen 4 Corners on the ABC last night (for those who haven’t you can get it here).

Overall, the programme was good, a necessary wake-up call. But later I was lying in bed, trying to work out the sense of unease niggling at the back of my brain. I couldn’t put my fingers on it. And then two of the CPecialparents articulated exactly what was bothering me.

Moo's mum from Terrible Palsy noted that “4 Corners took the easy route out and stuck to stereotypes and pity tactics.” And there was the core of my unease about the programme.

Pity and stereotypes.

No doubt those caring for the severely disabled are doing it hard. No doubt they need a whole heap more of serious support and help. But is pity what they need?

You will often hear it said by parents. My child is not a problem. My child’s disability is not a problem. The problem is society’s response. The snide comments in the supermarket. The difficulty to find information. The lack of services – and not just respite. The hundred and one rules for every tiny bit of financial support. The inadequate therapies. The non-existing equipment. The endless begging rounds to government departments and charities for basic equipment. These are the things that are difficult and stressful.

One of the CPecialparents put it eloquently:

“I find balancing his need for therapy and my need to work to pay for [her] therapy hard, I don’t find [her] therapy hard. I find the additional (and sometimes exorbitant) cost of the ‘extra’ things just to bring [her] to an equal level with [her] ‘able bodied peers’ hard. I find it hard to accept that people want to put limitations on my child. I find it hard to accept that access to most things is a drama. I find it hard to accept that the Governments think this is ok. I too don’t want to be pitied – that would be disrespectful to [my child]. My life isn’t hard, the red-tape is.”

I know we need to get the message out, and if we need to be hard-hitting to get it done, so be it. But there is more complexity to this story.

And where on the programme were the parents of children with a mild to moderate disability?

Project of Love

Beaver had a school project to do. The kids had to collect information about an animal of their choice and present it on a big piece of cardboard paper. The idea is then that they talk to their class about it.

Of course, Beaver chose an echidna. He’s been sleeping with a fluffy echidna for years, and is very attached to it. Over the last few days, we’ve been collecting information on echidnas, and Beaver moved slowly slowly from fear and reluctance over having to do this project to some interest.

On the weekend, we collated it all together. This was a Father – Son thing, Hubby and Beaver were busy talking about echidnas, what they eat, how to pick them up, where they live, that sort of thing. On Sunday morning, Beaver was up for putting his project together with his Dad. So they got started.

And then Possum walked past, had a look, and made some snide comment on how Beaver did not write the word echidna well enough.

And that was that.

End of project for Beaver. Hubby coaxed and cajoled him into putting something together after I took Boo Boo and Possum into another room, but it was no-where near what we knew Beaver was capable off – and originally interested in doing. We were disappointed, and we know Beaver is too, in his own way.

Really, what it came down to was that Possum felt left out, and really wanted to do a project too. He took it out on his older brother. And with Possum clearly better at writing than Beaver, there was an easy put-down.

In hindsight, we didn’t handle this too well. We should have given Possum his own project to do. Ach well, you live and learn.

This morning, the project went to school. Hubby took the boys, and he had a little chat to Beavers’s teacher, and explained the situation. She was very understanding. The kids will be presenting their projects over the next few weeks, and we’ll see if we can add to it or do something special. Hubby had the idea of making a spoof wildlife video. The boys are very much into Bindi the Jungle Girl (she’s the 9 year old daughter of late Steve Irwin, the Crocodile Hunter) along the lines of Beaver the Bush Boy. We’ll sit together tonight, after the rabble has gone to bed, and discuss strategies and planning….

When he came home from the school drop-off, Hubby told me of the chat with the teacher. Told me how sad he was for his son. “I watched him go off to assembly, and I had tears in my eyes for our boy” he said. ”It’s just not fair”.

No. It’s not fair. It’s so not fair.

But gee, I love Hubby. What a man!

Pool Cleaning

We cleaned out the pool this weekend. It's too cold for us to use it at the moment, but every so often it still needs a check and a clean.

In between the leaves, we found this lovely visitor.

It's a Sydney Funnel Web. Classified as "Deadly and Dangerous". Aggressive, one of the worlds' deadliest spiders. And they can survive under water for up to 14 days. We get a fair few of them in the pool. I don't know why they like it so much, we have a little creek not far away where they can go for a drink. Why they chose a chlorine pool with a resident snake is beyond me (we have found out through the neighbors that the snake family has been living under the pool for about 15 years now).

The wildlife, it's one of the joys of living in Sydney!

Hands

Look at these hands, signing "book".

Those fingers so nicely open. No more tight-fisted, blue fingers. Sure, we need to work on that thumb, but considering where we came from, these fingers are amazingly relaxed.


Something to call home about, eh?

Tagged

Oh my - I've been tagged (for the first time ever) by Shannon – and this means, I have to provide you, poor reader, with seven random, totally silly, facts about my life (I will post the rules of tagging in a comment). I don't know enough bloggers to find 7 others to tag (and who haven't been tagged a hundred times), so I'll keep it to Rob and Satria's mum So here goes.

1. When I was young, I used to sit on the toilet (or any other quiet spot) to have imaginary conversations in my head; they were my way of practicing English. I have always felt I should have been living in an English-speaking country. So I didn’t hesitate when a gorgeous Aussie bloke came along…

2. I love Shotokan Karate, especially Kata (a kind of formalised shadow fight, in which the aim is to improve on yourself rather than win a fight with another person). It’s my biggest current regret that I just don’t have a life that allows for the discipline of going to the dojo regularly.

3. It’s probably not fashionable, but I like gardening, well, bushcare-style gardening, which is a semi-political, semi-religious activity which involved ripping out all non native plants (in big patches when things are dire, or in small incremental steps) and coaxing local native plants back into our garden, while fending off the incredulous stares from our flabbergasted neighbours.

4. I was a vegetarian for about ten years. Three kids later and many kilo’s later, I gave up. Once I ate animal protein again, I lost 10 kilo’s and stopped feeling permanently hungry. I still wish I could be a veggo again…

5. I would like to become a Buddhist some time soon. But first, I need to find the right “style” (Mahayana, but not Tibetan. Hmm…): and find a teacher to take refuge with.

6. When I was a kid, my green bike took me everywhere. I pretended that it was a horse and I a cowgirl, or a spaceship and I an intergalactic traveller.

7. I love paprika flavoured crisps, the only thing I truly miss about Belgium (pretty much everything else I can get in Oz) - and double salted liquorice (an acquired taste, and not for the faint hearted).

And for no other reason than that they're fun, here are two baby pictures of Beaver and Boo Boo when they were about 4-5 months old. Can you tell who's who?

Look at this picture of Possum when he was about two years old. I came across this photo while looking for something totally different, and thought I must post this, it's soooo cute. He's a bit of a character, that one!

Yesterday we drove along the road to visit Da (the children's step-great grandmother) in her new digs, and Possum said "isn't our world a beautiful, colorful place?"

Quite, mister philosopher, quite.

Boo Boo meets the Minister

You're never too young to schmooze up to the power brokers in life.

Here is Boo Boo, snapped during a recent meeting with Christine Keneally, NSW Minister for Ageing and Disability Services.

We met her this week at a book launch in town (it was fun, Mamma took me on the train!). It's a book written by the Association for Children with a Disability NSW. The book is the first-ever guide book to disability services in NSW, and very appropriately called "Through the Maze" and will shortly be available (in pdf) on the ASD NSW website).

See that look on Boo Boo's face? It says: "Yes, I'm incredibly cute. But like many of my friends, I need some decent services and equipment. Whaddaya think Minister. Can you help to sort out the dire mess that is disability services in our state?"

And then she puts her head on the Minister's shoulders and adds: "Don't worry, my Mamma will write you a letter soon to explain some of the issues we face and you could help us with".