Now which one of these boys shall I sleep with tonight, she wonders....

Little Big Man

Yesterday Possum had his first morning at "big school".

It's one of those orientation mornings, where the kids get to visit their classroom, walk around the school and, most importantly, get to meet their teacher and classmates.

Little Possum was pretty nervous about it. He comes to the school almost every day to drop off his big brother, and has already met both his teachers. It's a small school with a strong community feeling, and he feels pretty comfortable there. But still, this was a big event for the little man.

He was very worried about having to do some writing, and not yet knowing all his letters. Poor little fellow. I had to explain to him that that's what school is for, to teach him these things, and that he's not even supposed to know any letters and numbers. That made him a bit more comfortable, knowing that he was ahead of schedule.

That morning, I pulled out his new school bag and showed him the special pencil case I had ordered for him. It contains lead pencils, coloured pencils, a ruler, an eraser and some scissors, all with his name printed on it. The bag has the school logo on it, and off one of the zippers hangs a redback spider (you know, preserved in resin, on a key hanger). Boy was he proud!

So I dropped him off and went home, taking Boo Boo to bed. What a luxury, a whole Thursday morning to myself, and only one school drop-off. Heaven.

I went back to school at lunchtime to pick up Possum after his big adventure (and Mister Determined, who had a follow up appointment with the plastic surgeon who stitched his finger back together - and by the way, all is healing well. We have a long way to go, but Mr. D. is happy that he is now allowed to swim).

Possum walked out of the class, looking proud as punch. When I asked him how his day had been, he just said "fine" and was not keen to tell me much more. He was happy to show off the work he did - some numbers and colouring in, but was very tight-lipped about what he actually did. It was only in the car on the way back, and again this morning on our way to take Mister D. to school, that Possum was answering his brother's questions about what he did that day. The only other information he was willing to give me was that there was a boy in his class with the same name as his Daddy (as in Hubby) and that that boy used to live in the old house on the school grounds, which will be demolished during the holidays and replaced by 4 new classrooms (the boys is the Deputy Headmaster's oldest), and that there was a nice boy with a Wiggles hat, whom he liked a lot. He also told his Daddy later that evening that "school is a little bit boring, there is lots of learning but not much time to play". Well, he's got that right.

What he completely failed to mention was the plastic bag of wet undies and pants I received from one of his teachers. The novelty of going to the toilet when it's toilet time, having to ask outside toilet time, and the total excitement and novelty of "big school" meant that the little man did a little wee in his pants. Poor tacker. Guess I'll have to spend some time teaching him to go when it's convenient rather than doing a quick dash to the dunny at the very last moment.

Here is a picture of him in the class.

The Election with the Missing Disability Policies

It's Election Fever in Australia, the nation will be going to the polls on the 24th of November to elect a national government.

Did you know that there is only one political party in Australia (not counting the newly formed Carers Alliance) that has an actual disability policy?

I was surprised by this fact.

For many years, the two major parties – Labor and Liberal – have ruled this country, and neither seem to have found the need to have a comprehensive policy on disability issues. Or at least, none that I seem to be able to find on their publicly available websites.

I did a quick search this morning, and it is sad but true.

The Liberal Party has one statement on disability issues on their website. It announces the annual payment of $ 1,000 to people with a disabilities and their cares (about which I posted previously in the post Thanks But…) and the extension of the Utilities Allowance to all those receiving Carer Payment (but not Carer Allowance, the lower government subsidy, which is what most people qualify for). There is also an announcement of additional funding for people with a disability, but that is actually the same announcement as the thousand dollars one. Nothing else. Hmm. A bit minimal if you ask me. Here is a suggestion I will take to my local member and John Howard. There are nearly 4 million people with a disability in Australia (that is one in five Australians) and 2.6 million people (many parents) who care for them. Maybe we deserve a bit more of a coherent approach?

The Labor Party has nothing. Zero Zilch. Not a single reference to people with a disability or their carers. Guess if you don’t work in the monetary economy you don’t count much for labor. Here is a suggestion I will take to my local member and Kevin Rudd – move with the times and beyond the old divisions and be a bit more inclusive. Please.

The only major party that has a comprehensive policy is The Greens. And it’s a good one too. Yes, I have to declare that I am not entirely impartial. I am a member of The Greens, and I have briefly been a member of The Greens Disability Working Group (before baby Boo Boo was born, in the days that I actually had some time) and was involved in starting the review of the old policy. I cannot claim any credit for the actual policy, though, as I have not been involved in drafting it, bar maybe two e-mail I sent with my five cents worth on the first two drafts.

Anyway, it is an excellent policy. You can find the whole text on The Greens website, but here is the quote that makes this policy so good – finally a positive definition of disability:

"there are a variety of medical, societal and environmental reasons why peoples' individual abilities differ; disability arises when society fails to accommodate these differences and creates, or fails to remove, barriers to equitable access for all."

Exactly.

I admit to being a long-time Greenie, but I know they're not everybody's cup of tea. But it seems to me that if you have a disability, or are a carer for someone with a disability, the major parties are not interested in you or your vote. In a political climate like that, is anyone really surprised by the formation of the Carers Alliance? I have my reservations over their emphasis on carers over people with a disability (although I wholeheartedly support their efforts to give carers a voice), but I feel tempted to join their party. Something to think about.

Caring Can of Worms

It seems that a can of worms has been opened in the Australian disability sector. A new political party has been established. It's called the Carers' Alliance, and it aims to give carers a louder voice.

Nothing wrong with that you'd say. Yet it seems many disability rights advocates are upset.

An article in this weekend’s newspaper outlined the struggle.

The article defines the people behind the Alliance as “an angry new breed of parent-carers" and outlines the divisions that have grown between the parent-carers and people with a disability. ‘What is good for the carers may not be goog for their sons and daughters. Division is growing between two groups - longtime disability rights advocates whose primary focus is the person with disabilities and new agitators [such as the Carers' Alliance].’

The "angry new breed of carers" feel let down by the established disability rights groups, such as People with Disabilities and Family Advocacy ‘because they have not provided sufficient help for their disabled children. The longtime disability rights advocates in the mean time, feel that the carers “threaten to shift the focus from the rights of people with disabilities to the interests of carers.’

Much of the disagreement seems to be over housing. While the carers are fed up with carrying the full burden of looking after their disabled children, and there is nowhere for them to go once they become adults. Since institutions have been closed down, parents have carried the can, and there are people in their seventies looking after their disabled offspring at home. The waiting lists for the small housing projects with support staff are years long, and many adults with a disability remain at home. The new breed of cares despise this situation (for their and their children’s sake) and want the kids to move out. Under the current financial constrains, they have ‘proposed a cheaper [housing] model known as “congregate care” or “cluster housing” where 10, 20 and in one case 60 people with disabilities will live together. To the disability rights advocates these are “mini-institutions” hardly better than the old gulags.’

One mother, clearly one of the “angry new breed” responded in a letter to the Newspaper:

‘I have been a full time carer for more than 42 years, with no hope of ever retiring. I am so over the claptrap of the disability advocates who oppose special-purpose facilities for young people with profound disabilities now living at home, screaming that they would be “institutions”. There are at least 55,600 people with severe or profound disabilities over 34 years old and still living with aged parent carers because no one else gives a damn. My deaf-blind and profoundly disabled adult daughter has no more choice about living with me than I do with her – there is nowhere else for her to go (…) More than 92 percent of all cared accommodation is still provided by family carers because the right services do not exits. Get real, disability advocates. What have you done to change this in the past 30 years? Talk about rights to people who have them, because my daughter and I have none.'

Isn’t this absolutely appalling. How did we end up with this division between the carers and their disabled children. All I can say is that this is the sort of crap you get when you don't look after people properly. But then, maybe it's a deliberate technique to silence the disabled community with the old "divide and rule" tactics. The cynic in me wonders if the government is happy. I don’t’ know, but this makes my blood boil. Such needless agony and suffering, of both the disabled person and the carer-parents. Could this really not be avoided?

I've been thinking about this since I've read the article and the response. I have a lot to say about this. Some of it goes into big political debates, some of it goes into the minute detail of daily life for people caring for a child - which becomes and adult one day - with a profound disability. This morning I was hacking away at some weeds and their roots with my mattock, putting all my frustration into it. My brain was racing with thoughts, trying to put my feelings into coherent sentences. I'm not sure I've fully managed to mull things over, but I had to write this out of my system.

In the end, I composed a letter to the Newspaper. I’m sure it won’t be published, but here it is anyway:

Since when did parents become the enemies of their disabled children? Can we pause here for a minute please? We have made many gains with regards to the rights of, and services for, people with a disability. Let’s not forget that many of these have been advocated and achieved by parents. Who created organizations such as The Spastic Centre? Parents. Who brought therapies such as Conductive Education to Australia? Parents. Equipment such as the Hart Walker? Parents. Who set up Special Schools, and fought for the inclusion of disabled children in to mainstream schools? Parents. We don’t want our kids in institutions. We want them at home, at school, at work, in the community – and one day, living their own lives. Independently.

Like any other parent, we love our children. Most of the time, we would shudder at the thought of labeling them a ‘burden’. But we would also be dishonest if we did not admit out loud that, like any parent, we have those moments that we don’t cope too well.. Those moments that we need a break. Carers need help, especially those caring for adults.

This is not just a purely selfish thing. The most heartbreaking moments in parenting a child with a disability are those when you realize that a small achievement towards a full an independent life will never be part of your child’s future. They may never move out of your house. Fall in and out of love. Get a job. Start a family. Drive a car and get a speeding ticket. Have mates to go out into town with and get drunk. All things most parents take for granted. Young people need to move out of the house. This transition is fundamental to becoming an adult.

As long as there are options, disabled adults can chose the type of living accommodation that suits them best. Why could young adults not live in semi-independent bigger groups, in campus style accommodation with recreational and sporting facilities? Many of us had a ball at university. Others will prefer smaller groups. Some will move from bigger groups to smaller groups (after falling in love, say) or vice versa. The operative word here is choice.

So give me a break. Can disability advocates and carers organizations please get off their high horses and start working together to lobby our government for adequate services and facilities for disabled people. If there were decent options and choices with regards to services, work places, and especially living accommodation, the only conflict between parents and their disabled offspring I know of is a well known phenomenon called a generation gap

There. I feel better now.

SOURCES:

Horin, Adele, 2007, An Angry Breed: Handle with Care, The Sydney Morning Herald Weekend Edition, October 20-21, 2007, page 33.

Tops, Jean L., 2007, Claptrap over Carers, The Sydney Morning Herald Opinion and Letters, Monday 22 October 2007, page 16

Thank you, but...

I got two letters from the Australian Government recently. The first one came from Centrelink, to let me know I was about the receive a letter from the Hon. Mal Brough, MP, to inform me about the Australian Government’s new Disability Assistance Package. Centrelink then cheerfully informed me that I will be receiving a Child Disability Assistance Payment of $1,000 each year from now on. The letter states that:

"the Australian Government recognizes the importance of assisting children with a disability and their families, while understanding these families have diverse needs which change over time. The payment is intended to assist carers to purchase assistance that best suits the needs of the family."

Some days later, the letter from the Minister for Families, Community Services and Indigenous Affairs came, informing me of the same wonderful news. It went into a bit more detail:

"The Australian Government will provide [this money] at a total cost of around $721.2 million over five years. This will assist almost 130,000 children with disability (sic) and their carers. It will contribute towards purchasing necessary support, such as a wheelchair, hoists, home or vehicle modifications, communication aids, therapy and respite. Importantly, the payment provides families with the flexibility to choose the type and level of support they need."

Sounds nice eh?

So why am I pissed off?

Look, thanks for thousand bucks (hang on; with two kids qualifying, I might get twice that. Let’s see). It’s welcome, don’t get me wrong. I’m not exactly ungrateful. But let’s face it, a thousand dollars a year is a drop in the ocean. Let’s have a closer look at some prices, as listed on the Independent Living Centre’s website or from our own experience:

- A manual Quickie Children’s wheelchair: $ 3,000 and a bit
- Extreme Powered Wheelchair/Magic Mobility motorized wheelchair: price guide $ 12,000
- Alpha 200 Hoist (Pro-Med) bathroom hoist on wheels: price guide: $ 3,260 to $ 3,620
- A home modification, say, to make a bathroom accessible: $ 16,000 (that’s how much ours was, and this did not involve any hoists or complicated changes)
- A vehicle modification is between $ 35,000 and $ 50,000 (not counting the purchase of the car!) depending on the vehicle and the type of modification
- A Pathfinder Plus (Prenteke Romich), a voice output communication device, which consists of a keyboard and a built in touch screen display. The device has the capability to produce synthesized and digitized speech. Price guide: $ 13,634 to $ 15,143
- Private Speech Therapy: $140 per hour after an initial assessment of $ 220 per hour (and an assessment takes about 2 hours).


So, a thousand dollar doesn’t stretch that far. And in any case, I’d rather not receive this Child Disability Assistance Payment.

Let me tell you why. Let me tell you in a nutshell what I’d rather have.

Either, I’d like to see a decent, well funded system where people are assessed on their needs, and high quality therapies and services are provided promptly to address these needs.

The other option is to give families loads more money (maybe an annual wage for carers) to run their own affairs. I’m talking a couple of hundred thousand dollars over a child’s lifetime, not the odd thousand here or there.

A third option is a combination of the two, where families have the choice to either opt for the first system – say, where the family needs and wants a relatively standard set of services and equipment – or the second, where families prefer or need more flexible arrangements.

Utopian. You’re dreaming, I can hear you say. I know.

Still, there are counties which use this model (generally the combination option). It can be done.

Maybe one day, Australia will come to realize the long-term savings of decent disability services. Maybe one day.

In the meantime, thanks for the little extra help.

Rolly Polly and other Achievements

The young lady in our house is turning into quite a princess. She's become very vocal, nattering on all day. And when she really wants something, or really does not want something, she yells the house down to get what she wants. We've seem many little developmental leaps over the last few days. After weeks of not much, suddenly Boo Boo is doing a few new things in the space of just a few days.

She's trying out some more new sounds - we've heard "Mel" (the name of our lovely nanny), "bye", "car" and "baba" for "water". She has also started using the sign for "water" when she wants a drink. Another thing we noticed it that we play a game once, or explain something, like posting an item in a tin can, or asking her to chose a toy and give it to Mum. She seems switched on, this girl.

Even when very hungry, she will not eat when she's being fed (unless maybe chocolate). She must and shall do it herself. This has extended to food that needs a spoon. We got two bendy spoons and madam now eats all by herself (well, with a little help from Mum putting food on the spoon at this point in time). Off course, she makes an unbelievable mess - I'll take a picture after a particularly messy feed and post it. Thankfully, it's nice and warm outside, so we eat on the deck as much as possible, where the mess doesn't bother us and makes the birds happy. And inside, well, that's the blessing of a wooden floor and the wonderful invention called a washing machine.

Not content with insisting on self-feeding, Boo Boo has added another skill to her repertoire. Just the other evening, she decided she should roll over from her tummy to her back, and even back - which is much more difficult, as it involves moving her body off her arm, which gets stuck under her tummy when she rolls from her back to her front. She has also managed to swivel around clockwise when on her tummy, and has started to pull herself up. She hasn't quite got the balance to do it, but the fact that the will and intend is there is good news as far as we are concerned.

I know, I know. Most kids her age walk around by now, and here we are, getting excited about a skill most babies acquire in their first few months. Still, for our lovely Boo Boo, it' s a major achievement. And she's pleased as punch with her new skills, rolling around with a michievous grin on her face (especially at bed time!). It means some changes in the routine, as I can now no longer let her sleep in our big bed safely, so she's learning to go to bed in her cot every time. And I get to have Hubby back in bed with me. Yipeee.

Back to School

We're back at school, and the kids are stuffed. They were happy enough to go back - to see their friends, and have the familiar routine back. But at the same time, the first week is always a bit of an adjustment and seems to take it out of them. This tiredness comes with one important bonus. With summer approaching, it's light very early in the morning and Mister Determined wakes up with the Kookaburra's just around five-ish. Now, we manage nearly a whole hour extra in the morning, which is a nice bonus for mum and dad.

Just before we started the holidays, Mister Determined wanted a serious word with me about school. One of his teachers, Mrs T. has been helping him with his work, especially with writing. He still struggles quite a bit with it all, and Mrs T. has been dotting out Kai's work, so that he could trace the words. While appreciating Mrs T.'s help, Mister D. really felt like having a bit more of a go. So he asked me to talk to Mrs T. when school started again this week. Which I did. And she was quite happy to give him a bit more time to do his own writing. And guess what. He's done rather well!

Aren't they gorgeous?

Mister Determined

Possum

Boo Boo

Hurting Heart

Isn't it amazing, how kids have this ability to express the world in such clear and simple ways?

This morning my sister-in-law and her family came over for brunch. The kids absolutely love it when their cousins - let's call them Kelpie and Lady Pink- come for a play, so there are always popular events.

Our two boys were born two years apart, and their cousin Kelpie came about in the middle, so he's very close to the boys. Kelpie and Possum are especially close - they are only 9 months apart, have been to Family Day Care and Preschool together, and are into the same toys and games. Unfortunately, things are a bit more difficult with Mister Determined. Although technically older than Kelpie, Mister D. admires his cousin and mostly allows him the leader spot. Despite his adoration of Kelpie, Mister D. finds is hard to play with him, not being able to understand the games, or having really no interest in the things most boys are interested in, like cars, trains, and dinosaurs. So it often happens that Kelpie and Possum end up playing together - and they play really well together - while largely ignoring Mister Determined, who hangs around being frustrated. Of course, it doesn't help that Mister D. loves playing the teacher (or, more recently, the movie director) and shouts at them, telling them what to do, often accompanied by a bell or a whistle. This has been so for the last year or two, and Possum and Kelpie have mastered the art of ignoring Mister D. Generally, he ends up playing with little Lady Pink, tagging along with her, trying to "teach" her things or "look after her". Recently however, he has been making an effort to join in with the boys, driving cars, and building dinosaur worlds, but the other two boys studiously continue to ignore him.

This morning, Mister Determined came up from the playroom looking sad and grunting unhappily.

- What's up honey?

- The boys are not sharing with me. They are not letting me play. That makes my heart hurt and I feel sad.

Didn't he just put that nicely? Mine too, Mister Determined, mine too.

Voor Oma Helma

Wel, zoals je kan zien, zo af en toe krijgen we toch nog iets gedaan hier, ondanks het feit dat er geen Oma Helma is om te helpen. Het betekent natuurlijk wel dat de keuken een rommelhok is, maar ja. Dat kunnen we 's avonds opruimen als het buiten donker is.

Het stuk naast de voordeur is gedaan, en de andere kant, die met de vuilbakken, is bijna klaar. The Man with the Van is gisteren en vandaag langs geweest en heeft alle bouwvakkers rommel van in en naast de garage en al het tuin afval meegenomen. Het ziet er al stukken beter uit!

En kijk, hier zijn we ook al aan begonnen. Ongeveer een-vierde is gedaan. Flink he?

Master Builder

Possum is in that age where he just loves his Lego. He's still using mainly Duplo, and "little Lego" is on the top of his wish list for his birthday and Santa. Here a picture of a space ship he made recently, and Bindi's tree house and a tree.

As much as Mister Determined would like, he just can't play with Lego, not even the big Duplo. He just doesn't have the fine motor skills to click the blocks together easily - he will manage if he keeps trying, but by then he has long lost interest. In addition, he just cannot imagine something and then work out how to build it.

I spent most of my childhood building things - cars and boats, cities and rockets. It is one of the lasting memories of my childhood, hours and hours enjoyed away while building. This is not for Mister D. He mostly feigns disinterest, but every so often, he will try to play with his brother, especially if Possum has made two of something, like the other day. Possum made two rockets, that transformed into trains, which the two boys then drove up and down from the Blue Mountains to Sydney. They are rare moments - Mister D. tends to avoid things he finds difficult, and Possum is so used to playing on his own, and so used to his brother's clumsiness, that he prefers to play alone (or with an adult who lets him be the boss).

One of those small, insignificant things that comes with CP. It' s nothing, in the big picture of things. It's nothing compared to how CP affects some of his little mates. Yet at times it still breaks my heart.

After High School Musical comes Bindi the Jungle Girl.

The boys had seen her show once on TV, and were totally impressed with all the animals, especially the dangerous ones. Then, on Monday morning, all three of our monkeys woke up before five o'clock, and we decided to walk up to the little cafe near the train station that is open really early for breakfast - and two coffees. The nice young lady serving us was called Bindi, which made her instantly popular with the boys. Later that day in the supermarket we saw a cheap Bindi the Jungle Girl DVD. What with it being school holidays, how could I ignore the coincidence?

So now I find myself endlessly explaining that yes, they are all real. Bindi and her mum and brother are still alive, but her Dad (aka the Crocodile Hunter) is dead. But yes, they are real. The tree house, however, is not real, the outside is a drawing, the inside is created in a studio. Yes, all the animals are real, except for the obvious toy animals. And then i get endless questions about which animals are "good ones". I try to explain that all animals are "good" as long as they are in their natural environments. Outside their natural habitat they become pests (they get that, as we have been through that extensively with regards to plants and weeds). Possum is especially impressed that even dangerous animals are "good" - he finds it hard to get his head around that one. And then there are hundreds of animal-related questions that make me realise I really should have paid more attention at school.

I don't want to get into the debate around Bindi - but Mister Determined reckons that she's cute, with a very beautiful mouth. So there you go. She's all right then.

So, in the spirit of all things animal, here is a picture a friend of mine send round for some light relief (she's desperately trying to finish her Masters Thesis - keep it up and good luck Michelle).

Pack of dogs attacking a crocodile near Richards Bay.

At times nature can be cruel, but there is also a raw beauty, and even a certain justice manifested within that cruelty.

The crocodile, one of the oldest and ultimate predators, normally considered the "apex predator", can still fall victim to implemented 'team work' strategy, made possible due to the tight knit social structure and "survival of the pack mentality" bred into the canines.

See the remarkable photograph, courtesy of Nature Magazine. Note that the Alpha dog has a muzzle hold on the croc' preventing it from breathing, while another dog has a hold on the tail to keep it from thrashing. The third dog attacks the soft underbelly of the croc'.

Not for the squeamish!

More High School Musical

An exclusive photo of the High School Musical cast (see earlier post).

Note the very sophisticated microphones. Mister Determined (aka "Ashley") holds a bob of green string, while Possum (aka "Luke") has stuck a pen (with an inverted cap) to his cheek with some sticky tape.

Some Recent Photos

Here are some shots from the "holiday" in the Mountains, starting with "that" door - and a close-up of the bloodspot where the finger got caught. And there is a piccie of the little man in his hospital bed, knocked for five. I do have a picture (taken on my mobile, so the quality is not too good) of the finger itself - if there are any requests, I'll publish it.

And how cute is this shot. Can you spot the odd one out?

What about this pretty pair? Aren't they gorgeous? The birds here in Australia are stunning. For my European friends and family, they are both King Parrots, the red one is the boy (showing off, as they do) and the green one the girl.

And this is why we keep coming back to the Blue Mountains....

Para versus Special

Here is something I have been thinking about.

One of the CPecialparents recently passed round this request from the CEO of the Special Olympics, as it appeared in their August 2007 Journal:

"This year, the Prime Minister will call a federal election. Whatever your political views I ask you to consider the future for young Special Olympics athletes and bring it to the attention of your local representatives.

Australia is a great sporting nation recognised for the Wallabies, Socceroos, Opals, Hockeyroos, and many Olympians and Paralympians who make us proud. But when the disability world (and the 170 Special Olympics programs around the globe) look at Australia, they see a heartlessness and meanness in government support for people with an intellectual disability to be involved in sport. They see major inequality in funding among the disability groups and a lack of consultation, understanding and direction.

Despite a lot of recent activity there has been NO NEW FUNDING from the National Review of Disability Sport. While we are grateful for the $0.1 million annual funding from the government this is just 5% of our income and compares to an annual $5.5 million which the Paralympics receive.

Given the benefits Special Olympics brings to sport, health, education, social inclusion and volunteering we believe government should support our work so that we can reach out to more of the 174,000 Australians with an intellectual disability.

(…) please raise this with your federal member during the coming election."

This request got me thinking. Why is it that the Paralympics get more funding than the Special Olympics? The only answer can be discrimination.

It is one thing to realise that people with an intellectual disability are more discriminated against than people with a physical disability. It is another to realise I have been guilty of this myself.

When our first child was diagnosed with CP we went through a rough time, as all parents do in this situation. I am not proud to admit it, but there was a sense of relief that his disability was physical – it seemed somehow easier to deal with. I remember one conversation with a physiotherapist, in which I told her I really wasn't too fussed about him needing a wheelchair – if only he would be able to talk. I also remember my deep disappointment when an IQ test failed to deliver the "he's definitely OK intellectually" result.

As a society, we place great importance on education. I hold three university degrees obtained in three different languages and was working on a PhD before motherhood totally derailed me. So I know what I'm talking about here. My Hubby is a bit of a thinker too. Brains are important for us. Stupidity or slowness was not something I tolerated very well. And then my firstborn came along to teach me a lesson or two about life, and I came to realise that how you live your life is what matters. How you love, and are loved. How you interact with others. How you value the simple fact of being alive, being there with and for others.

I have come to know children with an intellectual disability as the children they are. We have shared therapy and leisure time at the Special Needs Swimming Club and Riding for the Disabled, and I have learned that they are kids like any other, live normal lives in normal families, and there is nothing to pity (although the families could do with a bit more help). The kids just simply are.

Yet I admit there is still some prejudice I struggle with. The word "stupid" is banned in our house as one of the naughty words. It's partly because of my heightened awareness of the discrimination in the word, but I have asked myself if it is some sort of guilt reaction for still valuing intelligence over love. I still tell people that our son has a physical disability that comes with developmental delays and some learning difficulties, but he's intellectually "normal". I tell myself that I do this because I don't want people to treat him as if he's stupid – and really I don't – but is there not also some prejudice in me there? He's perfectly capable of showing people who he is, and doesn't really need me to pre-empt things. I tell myself that I want to "educate" people that being "a spastic" refers to a muscle condition and not intelligence. I am at pains to tell people about my son's friends with CP who are smart and have above average intelligence. But am I doing my bit for the "image" of CP here, or am I doing a disservice to people with an intellectual disability? What do you think?

High School Musical

My brother-in-law Jonathan is a Director (his "greatest claim to fame for the kids is Hi5) and has been working on a production of High School Musical in Newcastle for the last few months. This weekend was the opening matinee, and we were invited to attend.

Our recent holiday to the Blue Mountains reminded us that Boo Boo really does not travel long distances very well. So we decided that it would be best if I stayed at home with her, and Hubby took the boys to the show. Now Mister Determined loves shows, but he did not want to go. As it turned out, he was quite interested in the show itself, but did not want to travel that far for one - as he said "Mamma, I don't want to go on the freeway again". I couldn't disagree with him - we had done so much driving over the recent holidays. The drive from Sydney to the Blue Mountains takes two hours (on the freeway) and then the drive from the Mountains to Nepean Hospital was one hour (on the freeway again). We did that first drive twice, and the second one four times. No wonder the kid had had it with freeways.

But then he realised that the whole family was going - well, Oma and Opa, and Auntie Nic and cousins Fin and Saskia. He also cottoned on to the fact that all were planning to have lunch in Newcastle before the show, and dinner after. Keen not to miss out, Mister Determined decided to come along.

And what a good decision that was. Off all the kids, he enjoyed it most (well, Sas might have enjoyed it, had she not been so tired that she'd slept through the whole performance). Possum and cousin Fin got a bit bored towards the end, but Mister Determined sat there, his face glued to the stage, following the story, and bobbing along to the music - with his earmuffs on, of course! He had an absolute ball. The story helped - there was a lady with high heels, and the whole thing was set in a school, with teachers, and rules, and detentions, and some sports thrown in for good measure. Those of you that know Mister D. know that he's very much into these things, and here they all came together, literally singing and dancing!

They returned at 8:30 that night,Hubby pretty stuffed from the twice-two hour drive, and both the boys fast asleep in the car. We lifted them out, carried them to bed, and got them undressed, without them properly waking up. The next morning, Mister D. complained that that had been a bit scary. "I was driving on the freeway in the dark, and then suddenly I was in my bed, and it was morning". Magic eh?

Anyway, the next day we spend at home, doing lots of gardening out the front (yes, Oma Helma, I will take some pictures to show you) and then Oma and Opa came by with Da, to join us for lunch. And one more wonderful surprise - a DVD of the Disney version of High School Musical, the Concert. It doesn't have the whole story, but is a collection of the songs, performed by the cast. It is amazing. There are thousands of people in the stadium, all singing along to the songs. I had no idea how big this High School Musical is in the US. Apparently, the movie is coming to cinemas here soon, and we will take the boys (finally, something to go and see in the movies that won't scare them!).

Anyway, I think you can imagine what life has been like here ever since.

Normally, I am quite strict with the TV. Before our move, the powerboard for the TV and DVD was on a timer, going on at 4pm. Before that, there was no point for the kids to even ask for TV, ' cos it simply didn't work. Although I have not yet programmed the board since our move (and yes Nic, I really should, I know, it saves energy) they are still in the 'is it 4 o'clock yet?" habit. They know there is no point asking for the TV earlier.

But it's school holidays, and we're in week two now, when the kids are starting to get bored. Also, with summer on the way, it gets light here at about 5 in the morning. Despite block-out curtains, Mister Determined gets up with the first rays of light, about five minutes after the Kookaburras. So I am stuffed, and giving in to the temptation of the baby sitter box. Cars and Koala Brothers for Possum. And High School Musical for Mister Determined. Toilet roll in hand, he sings along with the songs (by now he manages some of the lyrics, albeit a bit delayed) and swings his hips, throws his arms around (copying the cast) and thanks the audience in a most professional way. Hours of entertainment!

Thank you very much Jonno, for another wonderful experience for the children. You're a gem.

Young and Old

Today, Possum told me "Mum, you're really old. You're 40!"

And he has been asking his daddy "when are you going to retire Dad?'

Although the latter question has more to do with having loads of time to play with him, I get the sense that the boy has a keen sense of time.

They are so precious at this age, I love it.

Relaxing Holiday part two

Time to continue the story (for part one, see the previous post).

After 4 hours, we were finally dismissed from the Blue Mountains Hospital Emergency Department. We were given some neurofen (to reduce the swelling and pain), some more panadol (for the pain), antibiotics and a letter for the hospital, and at 11 o’clock, were sent back to our cabin. As we walked out, the cheerful young girl and the mother with the vomiting baby were still there – the mother still feeding her small sips of water, the baby still puking it up seconds later.

Mister Determined kept apologising that he didn’t mean to do that. Once we finally convinced him it wasn’t his fault, he got very worried about his family member who closed the cabin door. So that night, Mister Determined pecked sparsely on the food Hubby had kept, and then insisted on going over to the person who closed the door to tell them that it wasn’t their fault. What a kid! As he went over with Hubby, I cried my first tears for him and his finger, and his gentle nature.

We’d dragged the mattress on the floor in the living room of the cabin, so Mister Determined could sleep next to his Daddy. I’m not sure he slept much – but Mister D. slept through all night, not even waking up for more painkillers – I think he was just too exhausted. I certainly did not sleep much. I just could not get the image of that small broken and bloody finger out of my mind. What I wouldn’t have given to take his place.

The next morning (Saturday), Opa Keith drove us down the Mountains to Nepean Hospital. While not a children’s hospital, we had chosen to go there because it was the closer, so that the boy would have some holiday left. I don’t know if in hindsight it was a mistake, but it certainly wasn’t a pleasant day. To cut a very long day short, we sat there in Emergency all day, waiting. We were seen by the triage nurse early on, and told that the plastics team were in theatre, preforming a complicated surgery fixing up a multiple stab-wounds case. We just had to wait and wait - and off course, Mister Determined had to fast, so Opa Keith and I did not eat either. So we sat on those plastic chairs. At least there were a few chairs without armrests, so Mister Determined could more or less lie down on my lap. I had bought him a notebook and a pen, and he “wrote” some notes, and drew some pictures. We went for a walk on the hospital grounds. We looked at the fancy clothes the ladies wore in the celebrity magazines. We counted to hundred and back. Sang some songs. High on the wall a television was blaring, showing some footy game no-one was watching. People in various stages of distress were walking in and out, some limping, some bleeding. Two police officers brought a beaten up woman, and two others came to collect the clothing of a stabbing victim for forensic evidence. We heard two emergency helicopters arrive. Once all staff were called to a cardiac arrest, and once to the resuscitation room. Thankfully Mister Determined did not understand the true meaning of these loudspeaker announcements.

We sat in that waiting room for five full hours. It was one of those days were I thanked my lucky stars that he has Cerebral Palsy and not ADHD – imagine sitting there all day with a hyperactive kid! These places are really not nice, and totally unprepared for children. My local GP, the local café and many shops – even the tile shop where we bought out bathroom tiles, for heaven’s sake – all have a children’s corner, with some toys, kids television, some appropriate books. Why can a hospital emergency department not do this? Some comfy chairs and sofas? Some toys? Some books to tell kids about hospitals? There as some snack machines, but that’s more torture than help, what with having to fast for surgery.

Then, finally, Mister Determined was called in to come and see the Plastic Surgery Registrar, a tall moustachioed man-in-green who introduced himself to Mister D. as Hassan. He apologised for the endless wait, and was very friendly to my little boy. He confirmed that surgery was necessary, and soon. Realising we were on a holiday, and trying to salvage some of it, he tried to pull some strings to get the surgery underway that afternoon (in which case we would have had to stay the night, but as far as I was concerned, that was worth it) but to no avail. Instead, he booked us in for the next morning in the main part of the hospital. He cleaned and dressed the wounded finger, which by now was not only mangled and bloody, but also very swollen, gave us some more medication, and send us back up the Mountains – just in time for the big family dinner, the one thing Mister Determined was keen not to miss.

So off we went again on Sunday morning. Opa Keith took us again and then went back up to enjoy some of the time with the rest of the family. We were taken upstairs to the children’s ward. The boy was put in a hospital gown – which he thought made excellent dancing clothes – and allocated a bed. At mid-day, they came to take us downstairs for the surgery. Doctor Hassan Sawar popped his head around the corner into the ante-room to say “hi” to “the brave boy”. The anaesthesiologist showed us the mask, and Mister D. got to smell the strawberry smell that hung around the mask. Mister Determined was in a fit of the giggles, getting nervous about this medicine that was going to put him to sleep. He knew I would be there (although I did not tell him that I had to leave once he was asleep) and he’d get an icy-pole when he woke up, but was nervous nevertheless. Once in theatre, he slowly drifted off as the smell of strawberry-infused gas grew stronger. His eyes showed he was worried for a while, but he calmed down as I held his hand, caressed his arms and told him that it was Ok, and I was there. Once he was gone I was led outside to let the doctors weave their magic.

I was called into the recovery room just as Mister Determined woke up. He was a bit confused, telling the nurses that one of the kids at school had slammed his finger in the door, and that he had seen statues in the room (dunno what that was all about). He then started to ask them for his icy-pole, impressing the ladies with is recovery speed. Shortly after that, we were taken back upstairs to the children’s ward, where Daddy was waiting for us, and he finally got his long awaited icy-pole. Two hours later, he was taking his sister for a walk in her pram, up and down the ward. One of the mothers in another recovery room was impressed “didn’t he just come back from surgery?” she asked, amazed that he was running around. The nurses were happy with his progress too, and, having achieved all the important milestones (keeping food and liquids down, and managing a wee) and being ok on all basic stats (temperature, BP, etc.) allowed him to leave the hospital half an hour early – so that we made it back to the communal dinner table just in time!

That night, I finally managed to sleep – more an exhausted sleep than a refreshing one, but at least it was sleep. It was over. All in all, we had spend 18 hours in hospital. I don’t know how many times I had to tell Mister Determined that there was nothing we could do but wait. That other people were sicker and sorer than him, and needed the doctors more. He asked me a million times “how much longer”, “is it my turn now”, “when can we go home”, “will we be in time for dinner” and told me many times “it’s not fair”. I answered equally often “I don’t know”, “we just have to wait sweetheart” and “no, it’s not fair”.

Of course, it wasn’t really quite over yet. We did have a lovely day in Katoomba, going down on the Scenic Railway and walking along the boardwalk in the rainforest valley. The next day (Tuesday) we drove home again – and for once, I was happy the holiday was over. I think Possum had a good time, playing with his cousins, going on the steam train (on the day of his brother's surgery). Mister Determined enjoyed running from cabin to cabin and having dinner together (heavily drugged up, but hey!) and Boo Boo was happy to see her three cousins. The rest of the family had a good time – and we celebrated Romilly and Tsuya’s birthdays with plenty of cake. But overall, Hubby and I had a shit time. The amount of energy it took to keep the boy together, stay calm despite wanting to cry over his pain, and scream at someone to improve Emergency services! The hours of trying to keep him calm during the endless waiting. Knowing that all control has been taken away from us, not knowing what is going to happen next. The mental image of the mangled finger … it took it out of me, and I was completely exhausted. Help! I need a holiday from my holiday!

Now we are home. On Wednesday, I had to drive Mister Determined back to the hospital for a check-up. To my surprise, it was over and done with in 15 minutes (not counting the hour it takes to drive there, and then the hour driving back). Doctor Hassan came and said “hello” again and looked pleased with the condition of the finger – I must say, we were pretty impressed too. It does look amazingly good, considering. I think it will always look a bit different, but all in al, it will be pretty close to normal. The stiches will dissolve by themselves over time. Mister Determined will need many weeks of physiotherapy on the finger to hopefully regain feeling in the tip of his finger (as tendons and nerves have been cut), and to maintain the ability to bend the top joint. Worst of all, he is not allowed to swim for three weeks – how’s that for torture! It’s 34 degrees outside, the pool is nice and warm – but we’ve left it closed until we can all swim. Finally something we can do to make it fair…

Relaxing Holiday part one

Well, we are back home from our holiday, a long weekend away in the Blue Mountains. And what a weekend away it was….

We’d been to the place before, a wonderful eco-resort in the upper Blue Mountains. There were 16 of us, spread over 5 cabins. For the kids, running between the cabins was the fun bit, endlessly going to “visit” each other. And every evening we all went to the restaurant at the reception building to eat together – walking there and back in the dark with torches, sooo exiting when you’re six years and under. We were all looking forward to a few days of holidaying, especially after my mother left us to go back to Belgium, and we’d worked so hard settling into the new house. On Friday morning, we left at nine in the morning - the kids were just too exited to stay at home any longer. We arrived at three and were settled in no time. Wonderful. Then, around six o’clock, it was time to get ready for dinner. I was on my way to our cabin to collect some torches, Boo Boo on one hip, brushing past the lovely Grass Trees, a Currawong warbling in front of me.

From one of the cabins, I heard someone say “ok, let’s close this door”

Some seconds of silence

And then an almighty scream.

Before my brain had registered it was one of my kids, I was already running. Mister Determined was howling. I had no idea yet what had happened, but I knew it was bad. When I got to him, I hoisted him on my left leg, swapping Boo Boo onto my right. Oma Ine had run off to get some band aids, Aunty Nic to get a towel with ice and some panadol. By the time the screaming had settled down a little bit, it was clear that Mister D. had his left little pinkie caught in the door. I looked at his finger, and new instantly that a band aid would not do the trick. We wrapped his finger in the towel with ice cubes and drove off to the Blue Mountains Hospital. He was shaking in the car, crying and screaming, his teeth clattering in pain – and the drive seemed to take for ever. How often can you say to a screaming 6 year old that it will be all right, and that we’re nearly there.

At the Emergency Department of the hospital we were seen by the triage nurse straight away. She gave him some more pain killers, put a rudimentary bandage over the finger (more so we didn’t have to look at the mangled thing too much) and send us off for an X-ray. Meanwhile, Hubby took Boo Boo back and put her and Possum to bed.

That’s where the waiting started. There was only one man in front of us, but it took a while until we were on. And then we had to wait to see if the pictures were ok. Thankfully, Ian the radiology guy had done a smashing job, and all pictures were ok. So off we went, back to Emergency. Where we sat and waited. And waited.

There was plenty of entertainment. There was a woman with a vomiting baby, who looked as if she’d been there for some hours already. A cheerful young girl, equally resigned to being there for many more hours. A man with a swollen ankle and his wife, who had installed themselves on the one and only sofa, he with his foot up, she with her book. Later in the night, two blokes came rushing in, one with a face full of blood. His half-drunk mate told the whole room that “some geezer smashed a beer bottle into his face, ha ha”. And a sad looking couple – mum carrying a young boy in his pyjamas and dad rolling a suitcase with him, giving me the feeling they had that case ready packed, and this was not a first.

Partially due to the drunken guy with his cut face, who got to go first, we sat in the Emergency room for over three hours. Mister Determined was not allowed to eat anything (although I gave him a chocolate bar and some water when no one was watching, he hadn’t eaten since lunch, and then only a little bit). He perked up when Opa Keith came and joined us in our wait on the uncomfortable plastic chairs. I eyed the sofa, keen to have my boy lying down to recover from the shock, but the old couple were studiously ignoring my glances. There were all these people with young kids half asleep – why could they not lie on the sofa? Sometimes old people can be incredibly selfish, as if old age in itself entitles them to what they want. I had no energy to take them on directly, so we stuck it out in the chairs.

Eventually, we were seen by Doctor Jeff, an older man with a hoarse voice and a gentle manner with kids. He looked at the X-ray, washed the finger, and then looked at us with some pity in his face. Mister Determined had broken the top off his finger bone, and cut through the finger nail, damaging the nail bed. He was going to need plastic surgery to fix this up properly – and straight away, before it started healing all crooked.

- Plastic surgery!? You mean…?

- Yes, ‘fraid so. You will need to go to tomorrow morning for surgery under a general anaesthetic.

I knew then that the holiday was pretty much over