Rollercoaster Parenting

Girls on Film

2011-08-12T10:57:00.004+10:00

Ok, not entirely happy with some of the language used in this news piece, but isn't she cute!?

Not a very sophisticated website - you have to go to the left of the page and scroll along the National News to get to the story about carers and the NDIS which ran on the 10th of August.

Stopped Looking

2011-06-21T16:24:00.001+10:00

There are those moments when something happens, and suddenly you see an issue with new understanding and clarity. I had one of those last week – and I thought I’d share it with you. To me, it perfectly illustrates how our system is “underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice” as the Productivity Commission’s Draft Report into Disability Care and Support so succinctly states.

I was inquiring about a particular type of wheelchair, one that comes up to full standing position. This would have some social and therapeutical benefits (don’t worry, I won’t bother you with all the details), so I asked my OT to imagine for a moment that money was not an issue – could she tell me if my daughter would therapeutically benefit from a chair like that.

Her response was practical giving me some pros and cons of such a chair for someone like BooBoo. She explained that she had no knowledge of a suitable support seating system that works in both sitting and standing position. Fair enough.

But then she wrote there may well be something suitable out there nowadays. She wouldn’t know about it, though, because:

“I suppose I have (…) stopped looking at them as Enable won't fund them”.

This hit me square in the chest and left me breathless.

Enable NSW is the government department that manages our state’s disability equipment scheme. It doesn’t have a great reputation amongst most parents I know because many items are not funded, and many expensive items (especially stuff made for people with complex needs, and new, innovative stuff). Most of its funding decisons seem to be based on what their budgets hold rather than what people need.

You may think that’s fair enough. But just know that this programme is chronically under-funded, and funding is NOT based on an assessment of how many people are out there in the community needing things, but on the political goodwill of our elected representatives.

But think about it for a minute. I know a young boy who needed a proper feeding chair, as he would choke and asphyxiate almost every time he was fed (sitting in a car seat). Food would get stuck in his lungs, and he would end up in hospital on a regular bases. A feeding chair, which would hold him in a better position for swallowing was deemed unnecessary! Sure, a feeding chair is expensive. Sure, you can do without. But sure, you will have to pay for the surgery and hospital admissions then. You don’t have to be a maths genius to work out what is cheaper in the long run… But, hospital admissions come from a different budget, so never mind…

Standing is very important for bone growth. We have to monitor BooBoo (and Beaver’s) hips regularly to see that they are not displaced. You see, the spasticity can pull the hips out of their joints, and especially as the child grows, standing is important to let the hip bones grow in the correct position. So there is one major reason for a wheelchair that goes up to standing.

Yes, we have walkers (although not a standing frame – and I’m not exactly dying to add another piece of equipment to our household furniture). But kids need to be taken out of the chair and placed in to the walker, which can be a bit of a job (especially as they get older and heavier). I do this whenever I can, but not nearly enough (lazy me). And at school they are not allowed to put BooBoo in her Hart Walker – it’s bad for the staff’s back, apparently (eh, and mine!?). So BooBoo spends a lot of time in her wheelchair. Surely it makes sense to keep her there and bring her up with one push of a button? Or am I not thinking straight here?

In any case, I have told my OT I want one of those chairs on the list we look at. It may not be for her, but that needs to be a therapeutic decision, not a financial one… If a chair like that benefits her, and will beg, borrow and steal to get the money...

Anyway, back to that line of enlightenment.

My OT (and she is fabulous let’s get that straight here) has stopped looking. Because even if it would benefit her clients, she knows the government wont fund it. And therefore the kids won’t get it (except maybe the rich ones who can buy their own, or the lucky ones who can find a charity that will buy it for them).

This makes me wonder.

What else is there out there for our children that we don’t even know about?

What else is there they could benefit from that even our children’s therapists don’t know about because the government won’t fund it?

Isn’t it a very sad sign when professional curiosity and development) gets killed off by a lack of funding?

We need an urgent reform of our disability services.

We need proper needs-based funding.

We need some long-term thinking.

And most importantly of all, we need the decision making power given back to the people with disability and their families/carers in the case of children.

We may not be able to expect long term thinking from government departments. But we can do that, we can plan and save and work out short-term costs versus long-term benefits. Because we are parents planning our children’s future, not bureaucratic departments balancing budgets.

We know these “costs” are actually investments.

We need an NDIS!

An email i sent today to the CEO of my service provider

2011-06-09T16:46:00.003+10:00

Dear Rob,

On 11 January 2011 I ran Pathways [the intake service] to put BooBoo on the OT wait list as she is out-growing her power chair.

Today (9 June 2011) I rang Pathways again to find out where we are at, and if there is any chance we can progress this issue. After nearly 6 months now, the chair is now on its maximum settings and unfortunately BooBoo is just not responding to my requests to stop growing.

I was told by Maria from Pathways that she could see our application on her computer (thank heavens!), and she will forward it to the committee again to see where BooBoo is at. She told me that she could give me no further information. She could not tell me when this committee meets or if they could progress our request in any way.

I know exactly which power chair I want for BooBoo (the next size up from her current one, simple really). Writing an application to Enable [the government agency that provides disability equipment] should be a fairly straightforward issue – but in reality, I know we need to trial some other chairs to satisfy Enable’s bureaucratic paper-hunger. From experience, that will take some months of careful coordination between BooBoo, her school, her OT and the one and only supplier of her chosen brand of chair (Permobil). Accounting for some forgotten paperwork and intricate details that no doubt will need to be produced, we will be nearing Christmas by the time the application reaches Enable. Once there it will sit on a desk for some more months before it is even looked at, and then filed in the “expensive items” pile, which moves at half the normal speed – and that is impressively slowly as you probably know. At this rate, I fear she will get her P plates before her new powerchair.

I understand you cannot control Enable (such superhuman feat would possibly earn you a Nobel Prize from a number of mothers I know). But surely it is not too much to ask to be able to make an appointment to put a wheelchair application in for a five year old child within a 6 months timeframe!? I’m not even asking for therapy sessions, just one meeting to get the process going.

What am I to do when she outgrows her chair in a few months time? Take away her mobility? Or come and clean your offices to earn enough money to buy one myself?

We have been your clients for nearly ten years now, and I am still as frustrated as ever with the system and the endless waiting to get appointments.

Please Rob, I know you are a busy man with much on your plate.

But can you for once and for all sort out Pathways and the referral/waiting list system please.

Frustratedly Yours,

Heike Fabig

Right Royally Pissed Off

2011-04-12T22:45:00.002+10:00

I am right royally pissed off! And I just have to write this off my chest. So here goes. It could probably do with some editing, but I have to get it out.

Recently, my friend Sue O'Reilly wrote a guest piece for The Angry Cripple on the ABC Ramp Up site. Ramp Up is a fantastic site full of disability news and opinion, and Sue has written for them before. That should not come as a surprise to anyone. Sue had things to say. She's an excellent writer and therefore says them well.

She wrote about the realities of housing for people with disabilities. She pointed out how our ideological positions have actually resulted in less opportunities and choice for people with disabilities. I totally agree with her article, and I knew she'd cop some criticism for it (as I'm sure she did), that was to be expected. But when it came, it came from an unexpected corner, and in a most unexpected way.

Todd Winther is an astute commentator with whom I have previously agreed (Todd Winther is a PhD candidate in political science and can be found blogging at Thoughts of a Frustrated Visionary). So imagine my surprise when he attacked Sue's position, and in a way I consider totally unfair.

Before he dismisses Sue's comments, he dismisses her personally as only a carer and implies the often heard comment that the disability advocacy field is held hostage by carers. Todd wrote:

"[Sue] claims that funding organisations and governments should pay more attention to those with disabilities. Instantly I saw the latent hypocrisy in this argument. How can someone who does not have a disability suggest this? "

I am just so tired of this cowdung!

I could explain to you why I think this argument is rubbish. Some of it you can find in comments I left (two, as I thought the first one had not come through). Suffice it to say that for a PhD student he really needs to revise is course notes on post-modernism and authenticity of voice. If he follows his own argument to its logical conclusion, he can only speak for angry Anglo young men with a physical disability and no-one else. Could only women argue for the women's right to vote or stand up against domestic violence? Could only slaves denounce slavery? Can white people not be against racism? Do you HAVE to have a disability to see the system needs fixing!?!?

But really, what makes me so angry about all this is that it is so bloody judgemental.

Let's get one thing straight here. I am not a carer. Let me just say that again. I AM NOT A CARER. I do not belong to any carer organisations. I have not even voted for the Carer Alliance - even though they are one political party that speaks for me - because their focus is a bit to carer-focussed for my liking. I shun every organisation with the word carer in it. Why?

I am not a carer.

I am a mother.

If we had a decent disability system, in which my disabled children get the same opportunities and chances as my non-disabled child gets, I will not need to be a carer. If we had a decent disability system, in which my children receive the therapies they need on a timely basis, I would not need to be a carer. If we had a decent disability system and my disabled children would get the equipment they need, I would not need to be a carer. Add equality of access, education, acceptance etc. You get my point.

I am a carer by default only.

When will people with disability get this? Like many parents, I am not in the disability community for my entertainment. Nor am I in it for me - even though I sometimes joke that I'm only in it for the parking. Or does anyone really think those $45 dollars a fortnight of Carers Allowance is such a phenomenal treat? When I advocate for education for kids with disability, when I rally for an NDIS, can you believe that I realise this in not about me? That it is about the people with the disability?

Believe it or not, I do actually know that. But you know what? They happen to be my kids, and if I don't stand up for them, who do you think will? You can have my Carer Allowance, you can have my time, you can have my frustration and my anger. Just give my kids what they deserve, and I will happily shut up and go back to my previous life. I have yet to meet a parent who woudn't give the world to be able to leave all the advocacy, and fighting, and fretting behind and just be a parent.

Don't get me wrong, I know where this resentment comes from, and to a large extend I understand it.

People with disabilities have long fought, and are still fighting, to get heard, to be treated as equal human beings. People with a physical disability in particular are rightfully fed up with being ignored and written off as useless or unable to speak for themselves. Things are especially hard for those who have difficulties with muscle control or speech - they know what they want, they know what they want to say, and just because they have difficulties articulating it, society writes them off. When people with disability are upset about people speaking for them, these are the situations they are referring to. But at the same time, there are those who cannot speak for themselves. When my friend with her 20 year old son with an intellectual disability stands on the barricades to demand appropriate housing for kids like hers, she does so, because firstly, there is no where for him to go except his parents house (and where is the choice in that for a young person) and secondly, because he can not. Sure, he can speak, but does not understand the concept of appropriate housing or would not know how and where to advocate for it. When my young son tells me he does not like school because he's behind the other kids and wants to quit, it is my job as a parent to keep him in school and advocate so he gets the help he need to finish his education (he is only 10, you know).

What actually takes place here is discrimination on the basis of disability. How on earth can it be ok for people with a physical disability to deny the needs of people with an intellectual disability just because they cannot articulate their needs and have them expressed by people who love them but, shock horror, are not disabled. Of course people with disability need to be heard. Of course, nothing about them without them. I would never dare to speak But people with a physical disability are not the only ones that need ti be heard.

One of the comments on the Ramp Up site, written by CARO, puts it beautifully:

"The Angry Cripple (...) said that s/he saw this column as an opportunity for all those fighting for a better deal for pwd to raise issues/concerns/subjects of topical interest in the disability field. AC didn't say "As the name of this column makes crystal clear, I'm only interested in issues affecting people with cp, ms and spinal injuries who use wheelchairs - anyone with an intellectual disability can go whistle Dixie". Nor did s/he say that families of pwd could and should go jump. What do you think parents/carers are fighting for when they advocate for an NDIS? Do you think they think it will mean free facials for the rest of their lives and regular paid holidays somewhere sunny? Or do you think they might be fighting for a better deal for people with disabilities? If so - where's the conflict? Where's the problem."

The other thing is that it is so bloody divisive.

As longs as we continue fighting, we loose. Instead of standing strong as a community, instead of pooling our political power, we squabble with each other. We refuse to see our commonality and focus on where we differ. We don't stop to see what we are actually saying, or asking for, because we are too busy attacking each other. And then we are surprised that the disability community carries so little political clout!? That politicians ignore disability? That our system is broken and there seems little interest in fixing it?

Give me a bloody break!

Can we just cut the crap and get on with the incredibly big job we have ahead of us.

Just stop for a minute, Todd. Stop for a minute and listen to what people are saying, before you judge them on who they are. Like my friend Sue, I am a parent - you would probably call me a carer - and we have seen eye to eye on other issues (like that ghastly add by the CPA) and you are a person with a physical disability. Yet I think you would be surprised how often we would agree - and I think we could make a good team. We might even get a decent disability system together.

Inside my Head

2011-03-23T13:48:00.003+11:00

So I'm sitting on a stool, holding little Boo Boo on the big toilet. Yes, she has a fancy schmancy toilet and shower chair, but the girl wants to sit on the big toilet like everyone else in the family. Of course.

She does her wee wee proudly, and then pulls the toilet paper towards her with her left hand. When she has a decent size piece in her hand, she transfers it to her right hand and uses the left hand to pull hard. The toilet paper rips and she proudly holds it in her hand.

- Oh, where did you learn to do that? I ask. Did they show you that at school?

- No. Me think about that inside my head.

Smart kid eh?

Variety Club Youth Choir Flash Mob 'I am Australian'

2011-03-15T21:12:00.000+11:00

Running for the dogs!

2011-02-11T21:10:00.001+11:00

Oh, and by the way, did I tell you what I've been up to recently? Have a look here.

So far, I've raised $1,600 for the doggies.

Finally!

2011-02-11T20:31:00.002+11:00

The day has come at last!

We tried many many times over the last few years. We kept slamming into a brick wall which seemed to consist mainly of money.

With "we" I mean parents. Parents of children diagnosed with Cerebral Palsy; some of them with the spastic type, some with the floppy muscles, some with a bit of both. Many of us were not exactly happy with the name. I mean, we all know how it works, derogatory words will always be with us. But it is bloody hard to tell your child that they should not take anyone call them "a spastic" when you then take them go The Spastic Centre for their weekly therapy... Most frustrating though is that the organisation in it's name is not inclusive. I mean, society does a very good job of excluding people with disability. Surely a service provider should be the one place that is inclusive...

As I said, many parents were not happy with the name. Some of us met with some of the organisation's senior management in 2003 and our discontent with the name came up. We were politely told to bugger off.

So we changed the name ourselves. In our family The Spastic Centre became known as The CP Centre. Sometimes we only-half jokingly referred to it as The Floppy Centre.

And being aware of the money, I wrote my will to leave money to the organisation only if it changed it's name. Told the fundraising people I'd not give them a cent until they changed their name. I think some other families did the same.

In any case, the message did get through. I remember another meeting in 2008 I think it was, where the same issue came up again. Their was some acknowledgment that the name had outlived it's usefulness and their was a gradual transition in place. The organistion had just changed it's logo to have Cerebral Palsy big on the too, and TSC in smaller letters underneath. We were told It would evolve from there.

And so now, finally, it has happened.

The Spastic Centre of NSW is now no more.

We now have the Cerebral Palsy Alliance.

I'm not crash hot about the Alliance bit. Sounds a bit like a political party to meWho exactly is in this Alliance? Or they are in alliance with who exactly? Certainly not parents!

But hey, better than The Spastic Centre eh?!

Invisible People

2010-12-17T07:54:00.002+11:00

We all know how discrimination works. But we tend to think about the big moments of discrimination, you know, not serving someone because they are Aboriginal, letting black people ride on the back of the bus, or park benches for whites only.

But we often forget about the little things - especially where practicality or cost offers a seemingly legitimate reason. Most people would find it unacceptable that a building would have a sign saying "female entrance around the back". Or imagine that people wearing glasses are only able to take every third bus that comes by because the majority of busses are build in a way that makes them unsafe for people with glasses. Would it be acceptable that women need to book special taxis that can take hours to arrive?

Silly examples? You may think so, but daily reality for people with a disability. Not only are many buildings only accessible through the back door, people with disability are meant to be grateful for it. As they are supposed to be grateful for the few limited accessible public transport.

As a mother of three children, two of which have a disability, this attitude makes me mad.

My children face inaccessible places on a daily basis. Have you ever noticed how many shops have steps? Even basic amenities such as doctors surgeries, chemists and post offices in my suburb are inaccessible. On a daily basis, this is annoying, inconvenient, and psychologically denigrating for my daughter.

But mostly highly discriminatory. It's the constant knowing that we are left out and ignored. In the end you are left with the feeling that we are the ones being an inconvenience to others. In the best case scenario we are stared at, whispered about, or pitied.

When she does get noticed it is often in a "poor dear" moment. We get those sideways glances or sad smiles. My young daughter regularly gets free sweets and treats - she obviously inspires people to feel pity for her because she cannot walk and uses an electric wheelchair to get around.

But the small discrimination goes deeper than access or pity. It's so small and insidious that most people, just like that one step into the shop, never even notice it.

Recently something happened that illustrates well what I mean.

My local newspaper, the North Shore Times, proudly reported the opening of a local accessible bushwalk. It was a nice article, about a nice event to mark the International Day of People with Disability. The photographer took a nice photo, and an upbeat article was written about "creating the opportunity for people with disabilities to enjoy the experience of trekking through the bush". Look, here is the link:

The photo has four people in it. In the foreground are a young girl in a yellow powerchair and an adult male in an electronic wheelchair. Their faces are clearly recognisable. In the distance behind them are a man and a woman, talking. Their faces are not clearly recognisable, but locals would not find it difficult to see the man in the suit is local MP, and Leader of the Federal Opposition, Barry O'Farrell

In the original version online, and in the print version of the newspaper, which goes to every household in my greater area, the credits for the photo stated as follows:

"Ku-ring-gai MP Barry O'Farrell has congratulated Ku-ring-gai Council on its wheelchair accessible bush track."

Every person in the North Shore Times pictures gets their name published. Why not the two wheelchair users in this photo? Are they not worth of basic politeness? Would the newspaper do the same in a story on people who use glasses? Or mental health? I suspect not, I have a feeling it's just the wheelies that don't count. Are the chairs they use more important to the photo than the people who use them?

That happens to be my daughter, Billie Boele, to the left, and Professor Simon Darcy, to the right. They are people in their own right, not just props for Mr.O'Farrell's picture.

Wheelchair users are people like you and me, they have names and lives. To deny them that, their very names, it's utterly disrespectful to say the least! It's the small, little discrimination at work. Many people don't even don't notice the anonymous wheelchair users' names are missing.

I wrote a letter to the newspaper's editor to ask for an apology to Ms Boele and Professor Darcy. Nearly two weeks later, I haven't heard peep from them - although the editor kind of apologised in the online comments and their names have been added. But no apology in the printed version. I am still angry and am not going to take this lying down.

But really, what I would like is a change in attitude all round.

Yes, it can be expensive to build a ramp at the front of a building to make it accessible. Yes, changing the layout of public transport will take money and time.

But the one thing we can all do, right now, is to stop ignoring people with disability. Don't stare. Don't pretend you haven't seen us. Just see us as one of the many expressions of human diversity. Don't deny them their lives. Please stop pretending people with disability are invisible.

Some Images

2010-08-29T20:09:00.003+10:00

I've not been well. I have been going to bed early the last few weeks, exhausted by the combination of our busy life and me coughing, sneezing, having fever, etc. So no big stories on the blog. But here are some pictures that allow you a glimpse of what we've been up to.

We took the kids to the circus again (we seem to go regularly, the kids absolutely love circuses) and as has become habit, the kids promptly put on their own act. Boo Boo likes the floor gymnastics, Beaver's act of course involved dancing, and Possum is carving out his position of Clown in the family, as you can see...

Our new roof not only looks good, it's working hard. Sure is. There are now 24 solar panels on our roof, generating about 5 kW of electricity a day. The panels are connected to an inverter so we can use the energy we generate in the house, and are also connected to the national electricity grid. Our government pays us the electricity we generate (whether we use it ourselves or not) and the system should pay itself back in about 4 years time. The evacuated tubes for the hot water are back on the roof too. They have heated the pool the last few years, but now they will also be connected to the hot water system in the house - thereby providing hot water for showers and the dishwasher, etc. We also aim to connect a heat exchanger to this system, which will generate hot air in winter and cold air in summer, which will be connected to our air conditioning system. The sun will then heat or cool our house without the use of electricity. On top of that, we now have a 5,000 litre rainwater tank on the side of the house. It's been connected to two of the three toilets in the house (and it is my dream to turn the third toilet in to a compost one, but that's a whole other story), the washing machine and the dishwasher.

And here are some pictures of the kids with Jenna. She has walked into our house (and lives) as if she has always been here. She's a lovely girl, and the kids adore here. As you can see, even Possum is in love!

She is the sweetest, most loving dog. She walks up to everyone ready for a pat and a play. She's great with the animals (the wild ones, I mean the non-human ones) and pretty much just ignores them. She even ignores Monty the snake! The chooks don't like her - and we don't let her into the chook run, but only because Jenna keeps stealing the poor hen's food. Charlie the bird is not too impressed with Jenna, but Jenna couldn't care less about the bird, and Charlie is slowly getting used to having this big black monster about...

Jenna is very well trained. She goes to the toilet on demand, sits and lies down when told, only eats when told (and doesn't really beg - although it's hard for us the keep the kids from spoiling her) and generally behaves impeccably. The only time she barks is at night, when there is some dastardly intruder (like people visiting the neighbours or a passing possum) outside and we need her total protection. I am currently talking to some doggie trainers to start her "re-training" as an assistance dog for Boo Boo.

Jenna

2010-08-08T12:09:00.003+10:00

See this?

This is not Jenna. This is a photo I 'nicked' from Wikipedia.

Why did I do that? Well, because Jenna is coming on Friday!

You may recall that we tried adding a dog to our family. It wasn't very successful. Yes, yes, I hear you. A dog is a whole lot of extra work. But there are some pretty important positives too. You see, Beaver has mates but what he lacks is a "buddy". Possum is scared of dog, and in general a shy and frightfull child. And then there is Boo Boo.

After our disaster experience with a rescue dog, we figured if we try a dog again, we better do it properly.

Everyone knows about the fantastic work Guide Dogs (also called Seeing Eye Dogs) do. But dogs can do more. If you read or say "My Sisters Keeper" you know about dogs alerting people to a pending epilepsy attack. You may have seen Companion Dogs in Old People's Homes or hospitals. You may have heard about Autism dogs. Or Assistance Dogs. All these dogs provide some service for people with a disability. We were quite interested in the idea of an Assistance Dog, which specifically help people with a disability to gain more independence, but it was an impossible idea. Assistance dogs get co-trained by their adult owners, so that would mean many more years to wait. And on top of that, the service is so popular that the waiting lists are closed.

Thankfully, the Guide Dogs Association of NSW has a wonderful programme called "Pets as Therapy". In a (simplified) nutshell, this means that the puppy dogs that don't make it at Guide Dog training are given to people with a disability as a very special pet. You still end up with a clever dog and we thought we'd take it to puppy classes with Boo Boo and teach the dog to open doors and pick up things.

Mid last year I contacted the Guide Dogs Association to have Boo Boo assessed for the Pets as Therapy program. A lovely young lady called Sam came over and we had a long chat. At the end of it, I asked her what we needed to to for the assessment and how and when we started it. To my surprise, she said the assessment was done, and Boo Boo qualified and was now on the waiting list. I nearly choked in surprise. Most government or charity programmes take endless paperwork and assessments, and a long waiting time to find out if you qualify or not. Sam told us the wait was in the time it took matching a dog with a family, and warned us it would be about a year, but it can take longer. As we have pets - chickens and a free flying bird at time (we didn't have the snake then) and visiting wildlife, I figured we would wait quite a while to find a dog that would suit.

So imagine my surprise when I got a phone call from the Guide Dog Association last week, almost exactly a year after I initially approached them. Were we still interested? If so, Sam had found us a dog.

Yes. Sam had found us a dog!

I was so excited and nervous and scared all at the same time. But yes, we were still interested! So on Friday (the 13th of August, very auspicious day!) Jenna will join us.

Jenna (or Gemma, I was so excited on the phone I didn't quite get the spelling, but Jenna is stuck in my head now) is a female black Labrador. She is two years old and has worked for about a year as a Guide Dog. Unfortunately Jenna developed a small cyst on her eye. A specialist surgeon removed it and she is fine. But this means she can not work as a Guide Dog again. She's currently with a carer recovering from her surgery, and the carer has a bird which flies around in her house. Jenna has shown no interest in this bird, and equally ignores the cat that lives there, so all of this made Sam think that Jenna would be suitable for our crazy house.

Sam will bring her over on Friday.

So, how lucky are we!?!

We get this wonderful, trained dog. Once she is settled with us, we will teach her to open the door for Boo Boo and pick things up that she dropped when in her wheelchair. We were hoping to get a doggy smart enough to teach those things to, but with Jenna having worked as a Guide Dog, I see no particular problems there.

Yes, its a big job. Yes, it means extra work for me. Yes, it is a bit daunting.

But I think it will be more than worthwile. This is one special dog, and you don't get an opportunity like this easily. This is a wonderful gift for our daughter - in fact our whole family - and I will do everything it takes.

It's very exciting, and the whole family is counting the days till Friday!

Sitting

2010-08-03T21:24:00.003+10:00

If you know my BooBoo, our you have a child with CP, you will immediately understand how amazing these pictures are.

She is sitting in the bath, with no help, not even an anti-slip thingy under her bottom.

She loved it - especially when Jess taught her how to splash water agains the wall to make a big mess.

The only problem was the tears when she had to get out. "No! Me more wimming in the baz!"

Technology

2010-06-09T20:48:00.003+10:00

Don't we live in interesting times with regards to technology for kids with special needs?

Little BooBoo still struggles with speech. She knows what she wants, she knows how to say it, but the words just don't come out in a way that people can understand properly. This creates frustration and leads people to assume that she doesn't understand them. They then talk to me about her, and all of that frustrates her even more.

She goes to speech therapy twice a week, and the girl is working really hard. She's getting there with the "s" and "f" sounds. In fact, she going so well with her speech that the therapists are starting to think that maybe she has a physiological problem in terms of air flow management, and we have made a tentative booking with a specialist at the Cleft Palate clinic at the children's hospital - but that's another story.

We have been discussing that the time may have come to try some technology to help the BooBoo Girl along in her attempts to communicate with the world.

Meanwhile, I have been gratefully plugged in to the collective brains of the CPecialparents.

The things those parents know, you wouldn't believe it. And there are some serious experts on augmentative and alternative communication (AAC) devices.

I had heard a bit about a great app for the iPod Touch called Proloquo2Go. Unlike many AACs, which can cost a few thousand collard, you can download it for just over $230. It's a deceptively simple program where you touch a series of pictures to make a sentence and then the computer speaks it. You get audio feedback when you touch the picture so even non-readers can use it.

There are a number of categories and there is quite a complex set of words, concepts and phrases in the program. Being digital, you can move things around, you can delete and add new words and categories, and you can add your own photographs. For example, you can take a picture of family members or a child's favorite toys and add them to the program.

As we had a small iPod Touch in the house, we decided to give it a try. And it worked a treat. BooBoo got the idea very quickly and very much liked to use it. She was even inspired to copy the computer voice and try out some new words. The only disadvantage was that the speaker in the iPod is not too great, so to really make it work, we bought a small external speaker, which was a bit fiddly to carry around and set up. And it has to be said, that the buttons on the iPod are a bit small. While she can manage, we knew it could be easier.

I was eyeing his new iPad. I soooo want one, it looks like such a wonderful thingy.

I know it's not quite a laptop, but in tandem with a desktop, it seems to me the perfect solution. Small, light and versatile. And I can confirm it's all that.

I am typing this on an iPad. Not mine, mind you, BooBoo's.

BooBoo's Opa Pieter loves technology, and of course he has an iPad. When we saw him on Sunday, the girl got to have a play with it, and Opa was most interested to see how quickly she was off and running with the thing. He mentioned that the Proloquo2Go would be so much easier for her to use on an iPad. I agreed wholeheartedly - but added that my finances simply did not stretch to one and the conversation moved on.

That evening, I'm doing some tidying up in the laundry (what is it with that place, I seem to do that regularly, and yet it always ends up in a mess).

And suddenly there stood Opa Pieter with an iPad in his hands!

You should have seen the sparks in that girl's eyes when he gave it to her!

School

2010-06-08T21:55:00.002+10:00

I had a decision to make, and it wasn't easy.

Boo Boo is turning five next year which means she is eligible to go school next year. She doesn't quite have to - it's all to do with the NSW legal age at which you have to start and when her birthday falls, I won't bore you with it. And he question is, is she ready?

I really have the sense that she's a bright little button and another year of preschool might not challenge her enough, but I wasn't entirely sure that big school was the right thing either. So, what to do?

In NSW we have a parallel school system for kids with special needs. And the rules there are a bit different. Due to the special needs of kids with disabilities, they are allowed to start school a year earlier, in what is then called a transition year. Speical schools tend to be small, have smaller classes and have a high student- staff ratio.

BooBoo is currently enrolled at a preschool program at a special needs school for children with physical disabilities and medical conditions (which is fully set- up for a cheecky four year old power chair driver). It's a wonderful place and I am more than happy with it - in fact I can highly recommend it.

But now, what next?

Parenting is an interesting journey. You start with certain ideals and as you travel along the road you find yourself adjusting to your childrens personalities and needs.

So despite my strong belief in inclusion I found myself In the school office of fhe special needs school enrolling BooBoo. And now I am desperately hoping that she will get accepted.

Confused?

This is what I'm thinking.

Another year of preschool will not be stimulating enough for her. She's not ready for kindy at a mainstream school. So if all goes according to plan, she will go to kindy at the special school next year. Which means 5 days a week, in a class of about 6 kids and two teachers (and it's free, which is a nice bonus). And if she gets accepted, we may get the last school term at preschool free too as it would qualify as the special needs early transition to school thingy.

After her year of kindy at the special school, she will then re-do kindy at the mainstream school her brothers attend. She will then already have had a head-start on the academic side of things, and will be able to free up some brain space for the all important social interaction and getting used to being in a very different environment. And nowadays there is plenty of flexibility in the system. If we feel she would benefit from another year at the special school, then we can do that too (and go to Year One in the mainstream school).

Does this mean that I no longer believe in inclusion? No, not at all.

But it does mean that I have learned to leave my ideology at the door when it comes go doing what's best for my children. Inclusion is the ultimate aim. I want my daughter to get an education so that she can be fully included into society. What I have learned is that different kids have different needs, and as a parent I need to do what's right for her at any given time.

I admit, I walked out of the school office with tears in my eyes. I never thought that I would one day enroll my child at a special school. And not only that, actively hope she gets a place.

Parenting is an interesting journey!

Mad as Hell media

2010-06-06T22:19:00.004+10:00

I have written before about our Australians Mad as Hell campaign for the introduction of a National Disability Insurance Scheme (NDIS).

We're starting to get some positive responses - so far we have collected nearly 15,000 pledges from people who will only vote for a politician who supports an NDIS.

The newspapers have taken up the story of these "Mothers from Hell" with their kitchen table revolution. And so has television.

And if you follow the links below, you can see that we've started to attract some media attention.

First there was this one, on daytime TV on one of our commercial channels (Channel ():

http://www.youtube.com/watch?v=cqDSMiwKEoo

And then this one (it' so long we've had to cut it in half to post on YouTube) on the national broadcaster (ABC):

First half) http://www.youtube.com/watch?v=3gB83VP55HU

Second half) http://www.youtube.com/watch?v=tS4Xa_YPHto

They wouldn't, would they?

2010-05-11T11:52:00.003+10:00

They wouldn't be reading my blog, would they?

Surely not.

It must be a coincidence.

This is what I saw yesterday as I drove past TSC.

Strong wind?

Replacing the sun-faded sign with a bright new one?

Or? Could it be that....

Nah! Probably not. Surely they don't give a toss about what I write. But I admit, my heart skipped a beat when I saw the sign on the ground. Until reality came calling.

Funny though eh?

Conflict of Interest

2010-05-06T14:42:00.007+10:00

As you know, we have kids with a disability that presents very much like Cerebral Palsy (CP).

Our son Beaver, now 9, started therapy at The Spastic Centre (TSC) when he was about 3 or 4. I was never overly impressed with the services we got there but it’s not like there is much choice (apart from having loads of cash and going private – but that’s another post altogether). The only consistent therapy he attended there was Conductive Education – although it is the only therapy TSC does not offer to everyone, nor is it free. That too, is another story. While I was not awed by the services for Beaver when he was young, things have not improved since our daughter Boo Boo started accessing TSC services, on the contrary – and I’m being polite here. And don’t get me started on the organisations’ name… But really, all that warrants a serious post of its own later.

This (long –sorry!) post about an ethical issue that really bothers me. I hope it won't get me into too much trouble...

When you drive into the headquarters of TSC you see a huge big sign. It features two cute kids with CP and some basic information. It informs people that “there is no pre-birth test and no known cure”.

So what, I hear you think.

Well, I’ve always wondered about that line, the one about there being no pre-birth test.

I’ve always more or less read it as “CP is not something you can test or plan for. It could happen to everyone – including you” or even a reassuring message to all the parents of children with CP out there “It’s not your fault honey. Come in, you are welcome here, we do not blame you here, we will help you poor dear.”

But there has always been a niggling uneasy feeling that something was not right about this message.

As I have travelled this road of disability, I have come to understand that disability is just one of humanity’s wonderful diversity. Sure, our kids have a harder life than others, and by extension, so do we parents. But on the whole their bodies are not the disabling factors. Society’s response to them – inaccessibility, exclusion, prejudice - is. Ah yes, political awareness.

So now we come to the very point of what bothers me about this “there is no pre-birth test” message outside TSC offices.

You see, TSC created an entity called The Cerebral Palsy Institute which, as its website says “aims to find a cure for CP. And establish a pre-birth test”.

I have no problem with anyone trying to find a cure.

But a pre-birth test? What is that all about?

Supposedly a pre-birth test is to better inform and prepare parents. Yeah, right!

Let’s have a very brief look at the mysteriously disappearing babies born with Down Syndrome. About 77 percent of pregnancy terminations in NSW are associated with a chromosomal abnormality (the most common being Down Syndrome) in pre-birth tests. As the director of the Catholic Archdiocese of Sydney’s Life, Marriage and Family Centre wrote in a recent newspaper article:

“The significant reduction in the number of people with Down syndrome is not due to an increased capacity among our medical healers to treat or ''cure'' those affected. Rather it is because of our improved ability to weed them out.” (Chris Meney, The Sydney Morning Herald, 29 March 2010).

Now, I don’t care much about his dogmatically anti-abortionist stand, or the way he waffles on about the special gifts children with a disability bring to their specially chosen parents (bwehh!) without ever acknowledging the daily struggle of people with a disability and their families in a government system that is fundamentally underfunded, crisis driven and dare I say exploits the love of parents and family member have for their disabled kin and does its best to ignore them.

But the man has a point. As he wrote:

“Children should be welcomed unconditionally for who they are, not for what they look like or what they can do. History has revealed where attempts to measure human dignity on the basis of functionality or appearance can lead us.”

He is of course referring to the eugenetics movement, as practices in many countries under laws of forced sterilization of people with a disability and in particular the policies of Nazi Germany, which would simply gas people with a disability as they were not worthy of life, and most certainly not procreation.

Thorny moral issues eh?

And while I really do not want to get into a debate around abortion, or abortion of a child with a disability, or even medical sterilisations – what bugs me is that the very same people who are meant to ‘provide a future for people with CP are also the ones who “envisage a future without Cerebral Palsy”

But back to The Spastic Centre and The Cerebral Palsy Foundation.

The top banner of The Cerebral Palsy Foundation states:

“We are taking on the global challenge to find the prevention and cure for Cerebral Palsy”

The website further clarifies the Vision of the CP Foundation to create “a future without cerebral palsy”. Followed by this quote from Marelle Thornton AM, President of The Spastic Centre and mother of a child with cerebral palsy:

"Surely this is the dream of every parent of a child with cerebral palsy (CP); that tomorrow no child should be born with CP."

Maybe we can, one day, cure (some forms of) CP, through stem cell research, or a new medicine, or whatever. Sure, like every other parent, I would love it if my children’s life could be easier. Sure, if a cure could be found for CP that would be grand.

But I get the sense the Foundation is appealing to our emotions and (deliberately?) confusing the difference between a cure and a pre-birth test.

Curing the CP of a child that is born is, however, quite another thing from not letting a child diagnosed with CP in utero live.

Apart from the bigger issue that it’s unrealistic to get rid of all disability, I question whether we should. Would we dare to get rid of any other minority on the basis that their life is more difficult?

No, Marelle, it is my dream to have my children, and others with CP, and others with other disabilities, unconditionally accepted and included in society.

It is my dream that people with a disability are accepted as part of our wonderful human diversity. Given therapies and equipment to improve their lives. Given education and jobs, and live life to the full. Not denied life. Not “weeded out”.

But what makes this all so hard for me to swallow is the conflict of interest between the aims of The CP Foundation and the stated aims of The Spastic Centre.

The two organisations are closely linked. Both organisations use the exact same logo of a colourful logo of a handprint with a geographical outline of Australia. The CP Foundation website enlightens us that

“The Foundation is a public, non-profit, tax-exempt organisation established by The Spastic Centre of New South Wales. The Cerebral Palsy Foundation Pty Ltd is a proprietary company limited by shares (Australian Company Number 069 475 387) and the sole shareholder is The Spastic Centre of New South Wales, a company limited by guarantee (Australian Company Number 000 062 288). The directors of the Cerebral Palsy Foundation Pty Ltd are appointed by The Spastic Centre of New South Wales. The CP Foundation currently has two directors: one who is also President of The Spastic Centre and Chairman of the Board of Directors, and another who is the Vice President of The Spastic Centre. Of The CP Foundation’s 11 honorary governors who assist the Cerebral Palsy Foundation with its fundraising initiatives, 5 have a close link to TSC.

We know from the website that “The Spastic Centre founded the Cerebral Palsy Foundation to realise its vision of a future without cerebral palsy.” Yet the 2007-2020 Strategic Plan of TSC proclaims TSC is all about “creating futures for people with CP”.

So, the President of TSC wants, one the one hand, a future for people with CP, and on the other hand, a future without CP.

And this is supposed to make sense to me?

This is not supposed to be a conflict of interest?

Well, bollocks. It is.

How can you provide services for a group of people you aim to get rid of in the first place? It just doesn’t sit well with me.

As it happens, I got an opportunity last year to put this before Marelle Thornton (Chair and President of TSC and one of the two Directors of The CP Foundation) and her colleague Rob While, the CEO of TSC

When my friend Sue O’Reilly and I breached this issue, Rob and Marelle rolled their eyes and assured us that they have extensively discussed this at the board level and it’s fine. Oh, and they have an Ethics Committee, you know.

Well. That’s all right then, isn’t it?

The “trust me” argument always convinces me instantly – that there is indeed an issue.

Some weeks later I bumped into a Board Member of TSC in a local coffee shop. He noticed our daughter, and we started chatting. This issue came up, and the amicable conversation suddenly turned sour. He went all very passive aggressive and assured me again that the board had dealt with all the ethical issues and there was no conflict of interest between the aims of TSC and TCPF. Oh, sure! When I told him that this might be so, but some parents viewed it as an issue, and surely they should listen to their stakeholders and in some way respond, he dismissed that out of hand with an irritated shrug of his shoulders. The conversation ended there, rather abruptly.

I am not convinced.

Just because the board of TSC, in its definitely infinite wisdom had decided all is well, does not mean I think all is well. And I can tell you, I am not the only parent feeling uneasy like this.

I think there is a glaring conflict of interest.

But what would I know? I’m only a parent.

Four.

2010-04-25T10:05:00.009+10:00

It's true. I'm four years old now. Here are some photos of my birthday.

I got lots of cards from friends and family.

And I got to open lots of presents.

Of course, there was a large amount of pink stuff.

And a very special Big Girl present from Tante Anita.

Looks good eh? It's a bit too big, but Mamma will sort that out for me.

Oh, wow, look at my birthday cake. I'm blowing out 4 candles.

Hip Hip Hurahhhh!

Me Four Now! Me Big Girl Now!

Mad as Hell

2010-03-27T23:54:00.002+11:00

Time to make YOUR vote count

We want to inform you personally of the launch of an Australia-wide, grassroots, web-based political lobbying campaign to support a National Disability Insurance Scheme– a no-fault insurance scheme designed to fund the essential services and supports needed by people living with a disability.

This would transform Australia’s broken disability support system and finally give real hope and control to millions of Australians affected by disability. Full details of this electoral campaign are available now at the campaign website - aptly named Mad as Hell .

The Mad as Hell campaign is directly relevant to:

Ø More than one million Australians with permanent disabilities

Ø Over 500,000 family members who are primary, full-time carers, plus extended family members, including sons, daughters, brothers, sisters, aunts, uncles and grandparents

Ø Tens of thousands of health professionals, teachers, therapists and disability workers who witness each day the devastating impact of Australia’s dysfunctional, crisis-driven support system on people with disabilities and their families

Ø Thousands of Australians working for the disability service organisations that now overwhelmingly support the introduction of an NDIS

Ø Every Australian now and in the future – because none of us is immune to disability arising from accidental injury, chronic illness or from birth

The Mad as Hell campaign will harness the voting power of every person who understands the need for fundamental reform to Australia’s broken disability system. The numerical strength of our combined votes can make political parties commit to full implementation of an NDIS – regardless of which party is in power.

The Mad as Hell Campaign features a Pledge of Voting Intent at the next Federal and State elections. The Mad as Hell Pledge states:

I pledge that in the next Federal and State elections, I will only vote for a political party which publicly promises to transform Australia's broken, inefficient, crisis-driven disability support system.

All Mad as Hell Pledge postcodes will be matched to Federal and State electorates, and candidates standing for election in these seats will be notified of the number of Pledges made by electors – with particular attention paid to marginal electorates.

How you can help Mad as Hell achieve an Australian national disability insurance scheme

To support the Mad As Hell campaign you don’t have to give any money to anyone; you don’t have to write to your Federal or State MP or local newspaper; you don’t have to become a member of any organisation or political party; you don’t have to march in the streets. All you have to do is:

1. Go to www.australiansmadashell.com.au

2. Click on the Pledge, enter your name, email address and postcode, then click Send.

Millions of people = Voting Power

Ordinary Australians have just one moment of power in a democracy – when we cast our votes on election day. Proposals for a transformative National Disability Insurance Scheme are now being considered by the Federal Government, and a Federal election is due later this year. So now is the time for all NDIS supporters to unite and harness our combined voting power to ensure fundamental reform of Australia’s disability support system.

Remember, there are millions of us who are directly affected by the dire state of Australia’s current disability support system. We belong to one of the most numerically powerful groups in Australian society, united by the anger and outrage we feel at the grave injustices we see all around us every day; and united by our wholehearted desire for sweeping, transformational change, justice and equity, in the shape of a no-fault, entitlement-based National Disability Insurance Scheme.

Lazy Saturday Afternoon

2010-03-14T22:57:00.006+11:00

The boys had gone to their cousin's house for a play.

Hubby had gone for a haircut.

So mother and daughter enjoyed a quiet afternoon in the garden.

First, Boo Boo read Dickie Duck and me a story.

Then she went into the Cubby House Cafe and made me some pancakes and coffee.

And some tea for Dickie Duck - who needed to be fed, of course. Dickie Duck was very tired from playing with the green ball, you see.

All the while, the girls (Princess Leia left, and Hannah Montana, right) were having a lovely dust bath and tried hard to ignore us.

Some days, life is hard eh?

Aimee Mullins: The opportunity of adversity | Video on TED.com

2010-03-04T22:17:00.001+11:00

Aimee Mullins: The opportunity of adversity | Video on TED.com

If you have the time, watch this. Spot on. Language is soooo powerful.

(with thanks to Terrible Palsy for guiding me there)

Sorry!

2010-03-04T22:05:00.003+11:00

I know, I know.

It's just been crazy. I have too much to do, and the days are too short.

Yes, we are all ok. The kids are pottering along. I will try and write a quick update post on them this week. There is also a post coming about a new campaign, an ethical issue that keeps bugging me, and a wonderful new gadget on Boo Boo's manual wheelchair.

You will have to wait a tad longer. Sorry. But I'm on to it...

Christmas Spirit?

2010-01-11T21:14:00.000+11:00

Christmas. The season of goodwill and all that. Yeah, right.

Put some (parents of ) people with a disability in a room together, and it won’t be too long until they start telling each other parking stories. Well, have a I got one for you!

I pulled into a multi-storey car park of a very busy shopping centre in a nearby suburb in the days before Christmas (I know, I know, what was I thinking?). It’s one of those fancy ones, where they have green and red lights above the parking spots to make it easier to find a spot. The level I wanted to be on was close to the walkway over the road to the shops, and filling up rapidly. There were three disabled spots free to choose from (they have blue and red lights, incidentally). I chose the furthest away since I was not intending to let Boo Boo drive herself in this Christmas shopping mayhem and opted for the manual wheelchair. I proceeded to unpack all my kit: empty shopping bag, nappy bag, wheelchair (which comes out folded and with the seat needing to be re-assembled). Then I picked up my beautiful little girl and carried her to her chair.

As I closed the door, a salt-and pepper coloured blonde woman with a big lime green pram walked past. She looked at me and muttered under her breath – but loud enough so she was sure that I would hear.

She said “Pffff, pop the kid in a wheelchair and get guaranteed parking space.”

I was so gobsmacked I did not manage to respond at all, which was probably a good thing. I mean, really, I’ve hear some dumb comments, some nasty comments but surely this one takes the cake.

Did Blondie think I was faking it? Bought a three and a half thousand bloody dollars wheelchair (not counting the seating system!) to get easy parking? Or does she really think access to disabled car parking spaces makes up for my child’s extra difficulties in life? The extra costs and heartache, the knowledge that every little thing for my daughter is – and always will be – more difficult? Or even impossible? That my three year old girl looks longingly at other kids running and skipping and dancing knowing she can’t do it?

For an effing parking space?

I spend the rest of the day thinking about what I should have said to Blondie. In the end I am glad I said nothing. I was so shocked I would have made a rude remark. But really, this woman with the lime green pram is a very sad person to be thinking like that.

So at the end of the day, I think the best retort would probably have been to go up to her and give her a hug. I’m not sure Blondie would have understood. I hope life gets happier for her.

Any other good comebacks? Suggestions anyone?

Invisible

2009-11-25T18:20:00.002+11:00

Yep. It's been quiet here.

Not because we had nothing on. Quite the contrary.

In the school holidays, we took the kids to the movies. Or, well, Boo Boo and Beaver to the movies. Possum is not much of a movie-goer, he gets scared easily by the stories and doesn't like the darkness and the noise very much.

Anyway. Beaver likes movies that have singing and dancing in them. So we took him to see "Fame". You remember that? It follows the stories of some kids at a performing arts high school. It's inoffensive drivel. There is lots of singing and dancing, lots of self-affirmation and growth though overcoming adversity and hard work. All that. All fine.

But on the way home it struck me. There were white and black kids, and Asian kids. There was a token overweight one. A nerd, a cool kid, a Jew, and a gay kid. But not a single disabled one.

Young people with a disability clearly have neither talent nor ambition.

We often watch High School Musical, Camp Rock, some Hannah Montana (notice a theme here?) And it's the same there. All sorts, but no disabled. Surely movies with music as a theme can fit in a piano player using a wheelchair or a blind drummer? Many other movies too could surely accommodate a disabled character - say a deaf baseball player, a blind dancer, a teacher using crutches? And no, I don't mean a baddie with a disability as is traditionally the case. I mean just someone in the crowd. One of the minor characters.

It can be done. There are examples. Did anyone see that cheesy show British about the church choir? One of the sons was clearly on the Autism Spectrum (although it was never mentioned beyond him being "different") and a small person. They were just part of the characters. Nothing special. Just like in real life, they were simply "there:.

You know, it's very odd for disabled kids not to see themselves on TV. Not to have their hopes and lives and dreams reflected. To only every feature as "baddies". What sort of signal does that give? Can you imagine a show, any show, or any movie, that would not have a black or Asian character in it?

I am fed up with disabled people being invisible. I've written about this before. About how different races and different religions and sizes are nowadays well represented in popular media. Adds, books, movies, TV shows.

Well, I've had it with disability being invisible. With my kids being invisible. It's time for action. I'm starting a campaign right here, right now, to make disability visible in the media.

Just like once was the case with black people, I want to see a "token disabled person" in eveyr movie, TV show and book illustration - everywhere - in my lifetime. Whaddaya think my chances are?

Random Holiday Thoughts

2009-10-16T13:27:00.004+11:00

I promised the boys a "Dutch sandwich" (aka nen boterham me hagelslag, or a sanbo with chocolate sprinkels) if they tidy up the house a bit. So, they are busy in the living room, and I have 5 minutes for some random thoughts.

- School holidays are anything but holidays for mothers!
- The weather has been crap, we've hardly been swimming.
- I made a chook run, the one and only thing I managed to do these holidays
- Tante Anita is in the country, and we had a nice two days together. The kids look forward to her coming back in two weeks and spend more time with her.
- We had a lovely 5 days away in Avoca on the beach. We did pretty much nothing. It was heaven. Even Beaver sat in his chair and just looked out of the window for a while. Unheard of!
- I have a lovely big Waterdragon in care at the moment. Gorgeous boy!
- We have got funding for Boo Boo's manual wheelchair (well, actually, modifying Beavers' old one to suit to her needs, but that will be another post soon).
- I have found a Shotokan Karate Club in the suburb next to ours. Dojo hours are just after kids bedtime, and on those evenings Hubby does not go to Yoga, and not the day our regular babysitter comes. How good is that! Finally everything has come together. I can't wait until next week to start again.
- Congratulations to Lieve and Stefaan for the birth of their twin boys, Tibo and Siebe! Well done mum and dad, two brand new future Aussie beach bums!
- We are still finding dust everywhere in the house from the dust storm. I think we still will for weeks to come
- Can you believe it's only 17 more days (yes, the boys made me count the days) until Oma Helma and Opa Manfred are here! I better start tidying up downstairs asap!
- Boo Boo said just before the holidays 'NO MORE NAPPIES". And true to her word, she has not worn nappies since (except in the night). We still have heaps of accidents, but she will tell me when she need the toilet (using the "toilet" sign and saying "poo poo" or "wee wee"). I am very proud of my clever big girl!
- I am reading some interesting articles, and thinking about starting a PhD year after next. Hmmmm....
- Shakespeare is just around the corner, and I have lots of props to organise. Anyone have a spare fake log lying around that I could borrow?
- Tonight we're having fish and chips with Oma and Opa on Manly Beach.

That's all for now folks. Boo Boo is awake, the house is tidy (I think) and I better go and make those promised sandwiches. Bye for now.

Dust storm

2009-09-23T13:11:00.007+10:00

This is the view that greeted us as we got up this morning:

A dust storm had blown in red sand from Central Australia. The weather was perfectly calm (we were in the eye of the storm) and the sky blood red. As I drove the kids to school the wind picked up and the rest of the storm started blowing the dust away again. Sydney looks nearly normal again. It was eerily beautiful.

Our house in the sand.

View across the street towards Pat's house - which is bright white!

Nintendo DS

2009-09-14T20:33:00.004+10:00

We have a Wii. Yet the boys, especially Possum, are intrigued by the Nintendo DS. Can you tell?

Possum came home from school one afternoon and made this. His very own Nintendo DS, with shooting-down-spaceship game and all...

I had a star chart for Beaver. Every time he made it through a Friday he got a sticker. And after 20 stickers, I promised him an Nintendo DS. Three weeks ago he finally made it. And promptly decided he didn't really want a DS, a notebook was just fine. And do you want to know why?

He wanted to know how much a DS cost. He looked aghast when I told him. He decided there and then that that was too expensive. Can you believe this kid? Must be his Dutch genes...

Me pway caw

2009-09-07T20:24:00.009+10:00

Playing with the cars. First, line them up; this way and that way...

Then we park them, all the colours together.

Then one car goes "boom"

Then they all go "boom". Followed by a fit of the giggles...

See? It's true!

2009-09-07T20:10:00.003+10:00

Just in case you didn't belive me, here is the proof:

Possum on the top, Beaver on the bottom.

New additions to the Family

2009-08-25T17:49:00.004+10:00

Look. Our family has expanded.

This here are Princess Leia and Hannah Montana. As you can see, they are two much loved new family members.

We decided a couple of weeks ago to have a go at having chooks. I found a company called Rent a Chook. They make it very easy. You buy a chookpen, food, hay and two chooks, take the whole lot home and see how you go. If you don't like it, you can return them within 6 weeks and you get your money back (minus the $100 deposit).Not a bad deal. I went for a small mobile second hand coop, as I really want the chooks to roam around freely.

The kids think they are the best pets. Nice and big, relatively easy to catch and hold and pat and cuddle and kiss. Within weeks they started laying eggs, first one, and now two eggs wait for us every morning. And yes, fresh eggs are something else! The kids open the chook pen every morning when we head off to school, and close it when they come home (and before it gets dark and the fox comes calling!).

The only trouble is, they like going to the neighbours' gardens, and some of them are not too keen on the mess the girls make. I shoo them away whenever I see them, and put the hose on them if they are in range. They should learn quickly - and then of course, I will placate the neighbours with a monthly fresh supply of eggs.

Beaver Boy

2009-08-19T14:34:00.003+10:00

Beaver Boy is having a good patch.

Last week, he received a Headmaster's Award for Courage at school. Handed to him by the headmaster, in full assembly. The boy was proud.

He also got a Star of the Week at Drama classes that Saturday. And this week, he was awarded Merit Card for helping a mother at the school who was looking for something she lost, of his own volition. Proud again. He has also learned to button his shirt.

Yes, he's having a good patch. He's happy, cheeky, boisterous, and very busy learning his lines for this year's Shakespeare play. He has 5 solo lines, and then about 20 as part of the Chorus, which I assume involves a big group. Possum is learning his lines too, so it's all Ye Olde English in this house at the moment. The kids are doing shows again and they've even started writing their own plays in the school playground at lunchtime play. Finally something at lunchtime play Beaver loves to join in with. Today he took a silly hat for their play, in which he plays "a baddie". That's all I know. That's all I need to know. His class is playing something, and he's a part in it. Unbelievable.

But the most amazing development is in the bedroom.

Yes.

Yes!

Beaver is sleeping in his own bed again!

Two weeks ago he suddenly decided that he would like to sleep in the same room as his brother, so they get to chat in the dark together. We put the boys to bed, fully expecting Beaver to turn up after some minutes. He didn't . We figured he'd come when we go to bed. He didn't. We expected it to last only one or two nights. It's been more than two weeks now.

I've probably jinxed it by posting about it today, but we're starting to get hopeful here.

And we're enjoying the new found freedom of being able to go into our bedroom to get a jumper. There are no longer bedsheets on the sofa.

We still live in wonder at such mundane things...

I know you can't quite believe it either. So tonight, I'll take a picture. Ok?

Things to do in a Hart Walker

2009-07-08T15:08:00.006+10:00

When you get a Hart Walker you get to experience the world in a different way.

You can stand up with your hands free. This means you can do so much more.

You can play Wii Boxing with your big brother:

Or you can help mop the floor:

Or dress up, and give an all singing and dancing show with your brother.

Hart Walkers are fun!

Hart Walker

2009-06-18T18:50:00.007+10:00

How is this for a story!

Boo Boo was recently approved to receive a Hart Walker. This is an amazing piece of kit. At first view, it looks like some torture rack from the days of the Inquisition. But it's actually an ingenious machine that teaches kids how to walk the way you and I take for granted. In that sense it's a gait trainer, once strapped in you have to walk by moving your knees up and down and keep your legs apart. No tip toeing, no knee knocking and no skateboarding like on the Kaye walker. You see, with the Kaye walker you use your hands to move the walker forwards, and as long as your legs support you and keep you upright, you walk. But many kids end up using their legs to push off in any sort of way, there is no need to do the normal walking movement. Well, the Hart Walker is designed to make you do that. This way, the brain has to work out that walking comes from the legs and not the arms. And your legs build up muscle memory of what walking means.

We were very lucky that Boo Boo was approved for the scheme. I was expecting to either spend many months on a waiting list, or pay for it ourselves, yet again. But we got even luckier - the Australian Lions Children’s Mobility Foundation agreed to fund a Hart Walker for our Boo Boo.

She was very exited to get this - and you should have seen her face when she realised she had her arms free with this walker, and all movement had to come from her legs...

So, this is the first piece of kit ever - yes, ever, for both our kids - that we did not cover ourselves or within our extended family.

While for us this is amazing in itself, just wait until you hear who did pay for the walker: Vic did!

Look:

This on the left is Vic. Yes, he paid for the walker. And no, we had never met Vic before.

Vic is an 87 year old retiree. Who decided to donate some money to the Australian Lions Children’s Mobility Foundation so that a child he had never met before got a chance to learn to walk.

Vic is at an age where, in my view, he is totally justified to think about himself and his own health only. Yet here he is, unselfishly donating money to help a total stranger. What a man eh?! He is an inspiration!

Vic might have donated money to a stranger. But he's no longer a stranger to us.

My Dave Moment

2009-06-02T17:17:00.003+10:00

On Sunday, I had a "Dave Hingsburger moment."

For those of you who haven't "met" Dave yet, you simply must have a look at his fantastic blog. Dave is a long-standing and very powerful disability advocate, who does not shy away from confronting people who are discriminatory towards people with a disability. I read his blog and admire not only his insight and analytical powers (not to mention how consistently articulate he is) and wonder where he finds the courage to do what he does.

Well, on Sunday evening, from somewhere deep inside me, came that same courage.

Hubby and I decided to go to the movies at the nearby Mall. It was a cold and wet Sydney evening, and the car park was kind of busy. We joked about how inconvenient it was that we didn't have our kids with us (not really, we were enjoying a night out together) because the only close parking spot was the disabled one. So we parked further down and walked back in the rain. Just as we got there, two young guys in a brand new black shiny Audi parked themselves into the disabled spot. Not a permit in sight.

And something came over me.

I stopped.

I looked at them. And I stood there. I shouted to hubby to go along, I'd come later, when I was done there.

The driver's mate looked embarrassed and focused intensely on the floor. The driver tried to ignore me. I stood there. The thought crossed my mind that he might come out and sock me one. I decided to stay nevertheless.

After a few minutes the driver couldn't take it any more and came out. Asked me what the problem was.

I told him I didn't see a disabled permit. He explained that he was just picking someone up. I explained to him that that is not ok. That he might be the difference between someone with a disability being able to enjoy an evening at the movies or not. Someone like my daughter. Or maybe his grandma. I told him that what he was doing was just as illegal as driving through a red light. And I told him that I would report him, and took a photo of his licence plate with my mobile as I said that.

He was not impressed, clearly couldn't give a toss.

And then I said:

"You are a very arrogant young man. I'm glad I'm not your mother, I would be deeply ashamed of you".

And that's when I "got" him.

His face twitched and I could see I had hit a nerve. Family was clearly important to him, and I had just shamed him where it mattered.

So I walked away.

He stayed put, of course. Wouldn't move his car for dear life.

But I got him. I think he won't ever park in a disabled spot again without some sense of shame.

I don't know what came over me, why I decided to challenge him. But I'm glad I did. Maybe I'm getting more radical in my old age. Maybe I'm just plain silly. I would never thought that I would dare to do this sort of thing. Maybe it's the the consistent reading of Dave's posts that have crystallised into action.

All I can say is "Thanks Dave!"

(and yes, the movie was nice. Especially since it was ages since my lovely hubby and I went out together).

Au pair pickle

2009-05-21T12:34:00.004+10:00

This is not an easy post to write. But the thoughts are bopping around in my head, and I need them out. So here goes. Sorry.

Our beloved nanny Jessy is going to do some volunteer work overseas. Good on her, she has my full support in this. But of course, I will miss her terribly. We've had some friends staying with us recently, and I realised how much I enjoy having someone else in the house. It's just fantastic what I can do while little Boo Boo is asleep. A quick trip to the shops, or to the vet. Go down in the bush to collect some foliage for the animals. Or even go and pick up the boys from school without having to wake her up. And then there is the joy of having someone else to talk to, to share a coffee and a chat with. Add to that the idea that this someone in the house could actually help with the chores (you know, running a load of washing, hanging up laundry, taking out bins, that sort of stuff) and the idea of an au-pair was born.

As our kids take a while to get used to a new person, I decided that we should get someone before Jessy is off. This would also allow a bit of an overlap period for the au-pair to get settled while Jess was still around to help out. And thus it was organised.

Unfortunately, things have not worked out that way. The au-pair never really settled in, as she felt overwhelmed by the whole thing, and was repeatedly unwell and homesick. After seven weeks, I finally asked her if she thought she'd last the distance until Jess would come back, and to her credit she was honest and admitted that no, she just really wanted to go home. And thus I told her to book a ticket that very day, and I took her to the airport last night.

And now, I realise how much emotional energy this whole thing has cost me. You see, despite her being quiet and shy, I liked her when I got those glimpses of the person underneath the wall of silence. While I have to admit that I started to worry early on, I was not prepared to give up that easily. At the same time, I found it very emotionally draining to have to manage the household and think about the health and welfare of someone else who was clearly not coping and not communicating. I think I just have enough on my plate and felt not capable of taking on more. Of course I can manage someone with an illness. But very early on I got the sense the underlying issue was a fundamental unhappiness of being here, and an unease of dealing with kids. I admit, I found that simply too much to deal with. And I think she really just didn't like us and did not manage to connect with us – especially not with the kids, which is kind of important!

Now I admit, Beaver in particular can seem difficult. But then again, he's such a sensitive soul, he picks up insecurity a mile off. And like any other animal, he goes in for the kill. It took him a long time to be ok with the fact that the au-pair was in a position to tell him what to do. He eventually came to understand that. But at the same time, he knew full well that she did not quite know how to handle him, and he exploited her weakness in this regard and pretty much ignored her. You know, like a dog can just smell a person who is afraid a mile off – and promptly bark and bite? Possum on the other hand is an easy child – anyone willing to listen to him or play Lego with his is his friend instantly. Boo Boo is unhappy with anyone who is not mummy as long as I am around, and happy with anyone playing with her while I'm out of sight – and probably still young and cute enough to get everyone to like her.

Anyway, it didn’t work out. I keep having these conversations in my head where I am arguing with myself why it didn't work, or whether I tried hard enough. My rational side tells me to stop this, but my mind keeps going – and I hope that as always, writing about it will help.

It just didn't work, end of story.

But of course, this has landed me in a bit of a practical pickle. Jessy is off in three weeks time. That is not enough time to find and organise another au-pair. And on top of that, Jess will only be away for seven weeks. She intends to come and work for us again after her trip, preparing for work and study next year. And I would dearly like our Jess back, and don't want to much her around. But seven weeks, that's not enough time for an au-pair to come. I mean, I can hardly get someone to come from the other end of the world for 7 weeks, can I. So I'm looking for someone who is already here and would like to stay a bit longer. They are far and few between. Or a nanny to help out for a few hours a day, or a few days in the holidays. This too is not easy. It's not easy to find someone, and Beaver is not very happy about the idea at all. You see, when I suggested to him that I get someone else, he burst into tears, saying he did not want a stranger in the house, a stranger to pick him up from school. Well, I can understand his reluctance. It always takes him a long long time to get comfortable with a new person.

So, what to do? Hubby is away for a week and a half soon. Thankfully Francine has offered to come and help me out, and her lovely family have agreed to her staying here a bit longer (dankjewel Monique, Pieter, Caroline, Thomas, Myriam, Sam en Tim!).

But what to do in the school holidays? It's a very busy time for hubby, and we're not sure how much time he can take off. I can't stay at home with the kids for three weeks, we will all go mad! Going places on my own with them is hard, what with Beaver tending to want to get into trouble, Possum enthusiastically running off to explore something, and Boo Boo in the wheelchair. Both boys always want to go off in different directions, and Boo Boo wanting something else altogether. Just going to the zoo is a major undertaking. And no, playdates are not that easy either. Possum is fine but Beaver doesn't get invited for play dates, and when he does, he won't let me go - which doesn't work for the other kids.

So, what to do?

Can't say I'm looking forward to the next school holidays….

They say that when a door closes, another one will open. I'm desperately waiting for that opening!

Or maybe I could try hibernation until August?

Invisible People

2009-05-18T20:09:00.001+10:00

Last Friday I went to an ad agency. They're preparing a brief to bring disabled kids "out into the open" in a community campaign run by a major corporation. I might be able to tell you more about that later. But for now, let's stick to my visit to the add agency. I was there with a friend who is also a mother of a child with a disability (we both work as volunteers for ACD NSW). The creative team of this big agency wanted to get a bit of an insight of what life is like as a parent of a disabled kid.

Well, it was kind of difficult to explain to three very creative and clever young people what that's like. Most of the reference points are those where you make comparisons with other parents, and since none of these young people are at that stage in their lives, it was kinda tricky.

It's tricky anyway. You want to give people an idea of how hard things can be. But at the same time make it very clear that our kids are neither charity cases nor burdens. That the burden is the way society responds to their disability. That the true disability is the exclusion by society. The negative language used to refer to people with a disability – and it's all so casually done that people don't even realise how hurtful this language can be. You know what I mean. Terms like "the spastic" or expressions like "don't be a retard" or reducing people to their disability 'the blind boy" or "the spina bifida girl".

So I made one comparison which I often make, one younger people seem to be able to relate to.

I explain that disability is natural. It is one of the many facets of humanity. It is just one of those things that make up diversity of people. Yes, people come in all sorts and shapes. White, black and in-between coloured brown. Christian, Muslim, Hindu, Jewish, agnostic. Liberal, Conservative, Socialist, Green. Gay, Straight, Transsexual.

Isn't it funny how we have come to accept all those differences with so much more tolerance, especially amongst younger people? Many of them don't give a fiddlers fart about people's sexuality (indeed, many are prepared to experiment themselves with more fluid identities) or political background or religion.

It is, thankfully, no longer ok to use derogatory language to describe people of a different religious or ethnic group than yourself.

Why then, is it still ok to use hurtful language to describe disabled people?

It is, thankfully, no longer ok to ask black people to entre a building through the back door or basement loading dock.

Why then, are wheelchair users supposed to be grateful there even is a back entrance?

Why are ethnic jokes no longer ok, but disabled jokes are?

I think I know partly why. There are many reasons, but there is one that stands out for me. And in the context of the add agency, I feel the need to write about this.

We have become used to seeing people with a different skin colour. Our society has become mixed, we grow up together, got used to each other, realised that we were just all simply people. As "the other" become visible, they become known, and the barrier starts to break down.

Do you remember your primary school books. Pictures full of little blonde, blue eyed kids with traditional names. And then, slowly, slowly, appeared the brown and black faces with different names. One by one. From the token black guy to a mix. My kids' books have Asian, African and European faces all together.

But no disabled kids.

They are just not there. They don't seem to exits. They are invisible.

No wonder then, we get stared at when we go to the shops. No wonder people feel it's ok to make stupid comments, use vile language. No wonder people haven't got the first clue of how difficult it is to get decent services and equipment.

People don't know about us.

Because we don’t exist.

Honestly. We don't.

Or tell me, when was the last time you saw a disabled character in a children's book (and I mean just there, in the background. I'm not even asking for a prime role here).

When was the last time you saw an add on TV with a disabled kids - excluding those for charities and awareness-raising. I mean, an add for MacDonald's. Or breakfast cereal. Or toilet paper for heaven's sake. You know those cute kids, happy faces that seem to look at you everywhere in major department stores or your local supermarket? Ever seen a face with Down syndrome on them?

People with a disability are invisible,

If we want things to change, people to care, we need to become visible. We need to be seen, so we can be heard.

So there is a challenge to all add agencies. Show humanity in all its diversity. Show us.

Zoo Station - Book Review.

2009-05-12T19:15:00.004+10:00

You've probably noticed, it's quiet here on rollercoaster parenting. I'm way too busy riding the rollercoaster at the moment. Hubby is travelling, kids are taking turns being sick - as is poor Sanna, who hasn't been well much since she came - and I'm way way behind with all my work. Thankfully it's winter, and there aren't that many animals around!

Regular readers will remember the Transnational Disability-Inspired book club run over on Chewing the Fat, Dave Hingsburger's must read blog. I have managed to read the book, but just can't find the time to write a review - so I will have to throw up my hands in defeat and pass you on to Dave's post and my (small) comment on it:

http://davehingsburger.blogspot.com/2009/05/zoo-station-ctf-book-club.html

Ok. Back to that long list of e-mails I need to attend to...

Funny Girl

2009-04-28T14:42:00.002+10:00

Boo Boo is very much taken with her new baby cousin Willow. So she thought she'd better check if Willows car seat capsule is comfy...

Phew.

2009-04-15T20:30:00.005+10:00

Phew. Sometimes it's hard to catch your breath.

I've been a bit busy. Beaver to anxiety psychologist, kinesiologist and physiotherapist (finally, after requesting some in 2006!). Finding a soccer club for Possum. Boo Boo and Beaver to get splints (AFOs), appointments for wheelchairs, walkers, shower chairs. And then some meetings with politicians and journalists to get some things happening, some ACD work I need to prepare, moving around furniture to make way for some desks for the boys and sorting out clothes to go from summer to winter school uniform – and all that in the school holidays! And of course, Boo Boo has come down with a fever tonight.

Thankfully, I've had some extra help. Francine has been around – and boy does an extra pair of hands make a difference – and Sanna has arrived and is settling in well after an initially difficult start with jet lag and a stomach bug. And thankfully things have been quiet on the animal front, just one concussed bird and one blind possum. Phew.

Boo Boo's third birthday and birthday party has come and gone. Yep. She's three years old now, that girl. We had a lovely little party for her, with some friends from preschool and kid she'll go to primary school with (they have siblings in the boys' classes or we know them from the school community). She loved every minute of it, she rather likes being the centre of attention. I do wonder where she gets that from? One visitor in particular was a highlight: Patrick, her love from preschool. I kid you not, she squealed in delight when he arrived, and actually screamed "Pa-Rick" when she saw him coming. And walked up to him to give him a big kiss. Yep. Preschool luuuurve…

Being three years old also means, of course, that her disability is now magically gone. Yes! Well, at least, that's what our disability service provider seems to think. You see, you turn three, and suddenly early intervention stops, and you have to go on the waiting list for services. You will still get some until you are five, but once you hit school age, it's all over. Early intervention is done. All you then get is "maintenance". Hmmm. I am so happy with the state of disability services in NSW. ..

Thankfully, Boo Boo's therapists are very nice human beings. We have been trying to get a shower chair and a manual wheelchair sorter for her. You see, she's getting a bit heavy (11.7 kg) for me to hold in the shower. Especially when soapy and wet. And the IKEA high chair is getting a bit small. I do wonder if PADP would approve my request for a shower chair. Someone told me about another mother who was told by PADP that a shower chair was not going to be funded. When the mother asked how she was to wash her child, the person from her PADP office told her "there is always the local pool." I kid you not!

Also, I'm keen for her to start using a manual wheelchair so she can develop some upper body strength. There is really only one wheelchair for little toddlers that I like (because the wheels can be turned back to front) but nevertheless, if I want to ask PADP to fund the chair, I need a therapist to tell me this is a good chair. So we did not manage to make this appointment (me, Boo Boo, my OT and a guy who supplies the chair) to get in one room together before her service plan ran out. So they have kindly extended her plan bu two months to finish off the shower chair, wheelchair and walker choice without me having to go and waste more time on a waiting list. Phew.

But then, of course, even if we decide on the wheelchair next week, I will still need to decide if I ask PADP or not. Seeing that I gave them a hard time in the recent parliamentary inquiry, it could go both ways. They can thing "better give that woman something" or "that trouble maker woman ain't getting nothing from us." And then, if they accept, the average waiting time for a wheelchair is 18 months. Do I really want to wait that long? Or shall I just start saving instead? Kafkaesque though, don't you think?

You are probably wondering why I am looking at blimming wheelchairs again. Haven't we just been there, done that? Well, yeah. But that was a power chair. A power chair is very important for her independence. But I think a manual chair is equally important, for her strength. My aim is to get a chair that is easy for her to use, and then add a lever system to make it even easier (not tried before in Australia with kids, as far as I can tell, but someone's gotta be the first one). I want her to build strength in her arms and shoulders, to be able to self-propel without the need of electronics. And also, to work on her arm strength needed for her walking.

Yes, you read that well, arm strength for walking.

You see, at the moment she's doing unexpectedly well in a Kaye walker with arm rests. See?

(Gorgeous photo by Robjess)

Some of you out there may remember Beaver used to use one of those. Look, here he is. Yes, that's him (in June 2003, age 2.5)

So my aim for this year is to have Boo Boo walk in the basic Kaye walker without the arm rests. And maybe one day, we can move on to quad sticks. And maybe one day – STOP.

Stop right there. One step at the time.

Fringe Dwellers we are

2009-03-31T15:21:00.001+11:00

He's a tricky customer, that Beaver boy. We recently took him for a psychometric assessment a couple of weeks ago. You know, kind of an IQ test. We're not so much interested in his IQ as trying to find out how the boy thinks and learns. He're really been struggling the last few months ( he's very dissapointed in his own slow learning, and his teacher is trying to find new ways to help him learn).

I have to say, these test are hard for the parents! Of course, Beaver did not want me to leave the room, so I sat through the whole thing. Beaver loved every minute of it – it's his dream come true. Doing work with an adult giving him on eon one attention! He did well, got though the whole thing without getting fed up, and kept his cheerful self up throughout. Of course he got tired towards the end, and of course he did not too well on the test scores. We're still in the "borderline to mild" intellectual disability side of the graph. But compared to the last test he did he seems to have jumped up a couple of IQ points.

The biggest surprise was that for some tests he was actually pretty bang on normal. Where he seems to struggle most is to integrate the different parts of his knowledge and thinking. He knows things but cannot easily connect two related things from different knowledge areas, especially with regards to more abstract thinking. Like, he can tell you about birds – and for example, the difference between native birds and introduced pest - and butterflies, but when asked where birds and butterflies are alike, he can't deduct that both fly. The testing psychologist felt this was more a neurological issue than a straight IQ issue s – he kept talking in terms of finding what "switches" Beavers' brain connections on and then the rest will click into place.

The psychologist compared Beaver to someone who's having a vision test and can not roll his eyeballs or shoulders, or turn his head or neck. It's found the patient has perfect eyesight (Beaver's "vertical" logical thinking is fine) but no peripheral vision (the "horizontal" thinking that compares and integrates facts). It might be a difficulty in using both sides of his brain and pulling information across from the right side to the left side, which is why he suggested we might try some kinesiology.

One thing that has come up again and again is that Beaver has retained almost all of his primitive reflexes. There is some chiropractic work that can be done on this and we have started on that track. I have also booked an appointment with a kinesiologist who works on learning difficulties and other neurological things and has done some work with primitive reflexes. It is very interesting to note that Beaver's Moro reflex has got markedly smaller since our chiropractor worked on it, and at the same time, Beaver's reading has taken another jump…

But basically the psychologist said Beaver does not fit in any clear label or tick box. And there is some suggestion that his learning difficulties may have nothing to do with his physical disability but might be just plain bad luck. There may well be something out there that helps him, but he's not a clear case, and according to the psychologist, it may well be that traditional therapies don't help Beaver much. He told us we might have to go and look in strange and unusual places, check out 'the fringe' as he called it and try out some things.

Isn't' it lucky that we feel quite comfortable in the fringe?

Touch and Go

2009-03-24T14:09:00.000+11:00

Have you noticed how all new appliances seem to have touch screens? Or totally flat buttons? My electric cooking plate has them , and I do find them fabulous, s easy to clean! But it did occur to me that all this touch screen stuff is no good for those amongst us who don't see too well. Since the arrival of the iPhone, touch screens seem to have become the new standard; many other new phones have no more buttons. It's all touch and slide and choose and what have you. But there is something to be said for good old fashioned buttons people with vision impairments can feel.

Jealous

2009-03-18T21:40:00.002+11:00

Beaver, Possum and their cousin Kelpie were playing bowling on the Wii.

Kelpie kept loudly checking the scores after each bowl, making sure he was winning. Possum didn't look to happy, but played on. And Beaver got quieter and quieter.

About half an hour later he came to me, looking sad and dejected.

- Mamma, I am a bad person

- No you are not! Why do you say that darling?

- Because Kelpie kept winning on the Wii, and Possum was always second, and I was always loosing. That made me jealous. And being jealous is bad. Being jealous makes me a bad person.

I told Beaver that being jealous sometimes is ok. We all feel jealous sometimes. It's not bad. It's only bad if you let it take over, if you let it rule your life and make you unhappy. It's ok to be jealous if you can understand that you are jealous, and then let it go. I told him that he should play the will to have fun, and if he wins, that's nice. If you only ever want to win, you can only ever have fun when you win. And I assured him over and over again that feeling jealous is normal, and does not make him a bad person.

Sensitive little soul eh?

Giraffe Girl

2009-03-14T21:33:00.008+11:00

Last week, I had to take a bird to Taronga Wildlife Hospital (for the full story, have a look at my wildlife blog).

We have a Zoo Friends membership.This means we paid lots of money up front and then you can go to the zoo any time you like. So I left the kitchen sink dirty. I left the huge pile of laundry. I packed up Pinecone the bird and Boo Boo my daughter, dropped the boys off at school, and drove to the zoo. I handed the poor little birds in at the Wildlife Hospital (who performed a miracle over the next few days) and then took my daughter to the zoo. It was absolutely lovely.

It was the first time ever I had taken her to the zoo on her own. Normally we have the boys there, and between them, they pretty much dictate where we go and what we do. Not today! The madam was calling the shots, and she was loving it. We saw the Koalas. Their cages were being cleaned, and Boo Boo pulled a funny face and said "wee wee" and crumpled up her nose at the smelliness. We saw many birds she knew from my aviary, we had a look at the lions, monkeys and elephants. When we got to the giraffes it was their feeding time, and Boo Boo was intrigued to note that hey eat grass.

She pointed at the grass on the side of the giraffe enclosure, near to the bench we were sitting on for a sip of water. So I picked her some grass, and she promptly popped it in her mouth. And there was Boo Boo the giraffe. See?

But probably the highlight of her trip to the zoo was the ride in the little pretend train. I have to say, the train is a silly little money spinner. It is a short ride and costs $5, but boy, it was worth every cent. Boo Boo sat in the train (on my lap) like a princess and looked left and right, commenting on everything she saw (in her mix of basic words and sign language). She waved at everyone. Human and animal alike. This girl was surely a queen in a previous life! At the end of the ride, she gave the driver a big smile and said "an-ouw" (translation: thank you) with the sweetest face which melted the driver's heart – and had him waving bye bye until he was out of sight.

She charms the pants of anyone, that girl.

One Step Forwards, Two Steps Back.

2009-03-06T12:25:00.002+11:00

Remember some weeks ago when Huby and I tried to have this day together?And Beaver went haywire? That was on a Friday. Ever since that day, Beaver plays up on Fridays. He cries in heaving sobs. There is no reasoning with him when he gets like that. I guess it's a full blown anxiety attack. Things get so bad they have to take him out of his classroom and a plethora of special ed teachers and teachers aides have to look after him.

The one thing that calms him down is knowing that mum will come and pick him up. I've done this a few times, and on the days it wasn’t' too bad, insisted he stayed at school, trying desperately not to get into a "if I cry I get a day off" routine. Last week I had a meeting with the special ed teacher and she said she's work out a schedule of what to do when this happens again.

Well, it happened again last Friday, and she wasn’t there, nor was there a programme, nor had the other teachers been briefed as far as I could tell. So I ended up having to take him home. On the way home, it all got too much for me, and I had to pull the car over to have a big cry. Every Friday this malarkey. He still doesn't sleep in his own bed – he goes to sleep in our bed and will only go to sleep if I am lying next to him and read my book. If I don't he'll stay awake until we go to bed, and he sleeps on the sofa ever night (we transfer him there when it's our bedtime). I am tired and worn down.

Aren't things supposed to get a bit easier as kids get older? Boo Boo is getting more and more independent. She now no longer cries when she is dropped off at preschool. She just pulls a sad face, waves bye bye and drives her wheelchair into the courtyard for outside play. I am so proud of her! I have taken on the wildlife work and some disability advocacy, trying to do something useful and carve out a bit more of a life for me. And then there is Beaver nibbling away at the edges. Arghhhh. Combine that with some really bad behaviour recently - hitting, lashing out, punching, and endlessly saying things like "I hate you" and "No, I don't care" – and I am really at my wits end.

Yes, we do see a psychologist with him. He loves it. He sits in her comfy chair, legs casually crossed, and chatters away about all matter of unimportant things, avoiding the real issues and lapping up the attention (I know, he wants me to stay, another thing I'm gradually trying to change). That's fine, but it's $160 a pop!

I guess I just had a bit of a "what about me" moment. I have not worked for 8 years, I have put my PhD on the shelf (well, bin really) and been a full time parent; all with the idea to be there for my kids, to give them lots of love and stability so they will he happy and secure. Yet there is Beaver, giving me the big "na-na-na-na-nah". What else am I supposed to do? Oh man!

Of course, this whole thing is not really about me, it's about the boy.

Thankfully today (Friday again) was a bit better. He seems to manage to stay at school with a timetable the special ed teacher made for him to give him structure and security. I will come a bit early to do a final session of work with him, and praise will fly around as if he has just won the Nobel Prize.

Seana put it well. Beaver is "stuck in a groove" about Fridays now. He can't seem to get out, and by being stuck in it he deepens the groove. This week he started on Thursday evening, getting worried about Friday.

I'm going to have to find a way to get him our of this state. I've cleared my diary for the next few Fridays to be on hand. I'm not going to take him home anymore; I'm going to stay with him at school. And we are going to celebrate every little achievement with one of those old fashioned star charts. There will be little rewards on the way (like crossing the road with me this evening if he gets through today, his current "thing"), and lollies, and the final goal, a Nintendo DS. Yeah. I don't particularly like these things, but I'm willing to pretty much sell my soul here in desperation. He's a tricky customer, that boy!

There. I've written it all down now. Please don't feel bad for me, I've had my moment, I'm ok. It just sometimes helps to have a cry, have a self-centred moment. And it makes me feel better to write about it.

But if you have any ideas on how to deal with anxiety attacks, feel free. I'm needing to learn here….

Big Brother

2009-02-25T19:42:00.005+11:00

Some little girls are very lucky. They have a big brother.

When mamma gives the little girl a shower, a big brother can walk up and say "Mum, can I do it?" And then the mamma hands the hose to the big brother, and he washes his little sister's hair. And back. And ears.

And that's heaps of fun!

Things to do with a girlfriend

2009-02-23T13:26:00.002+11:00

Beaver says:

- Mum, the boys in my class say girls are yuk and they don't want a girlfriend.
- Hmm, is that right?
- The boys say that they don't want a girlfriend, but I tell them that they're wrong and they will change their minds when they get older.
- Sure thing!
- Mum, when you have a girlfriend, you kiss them, don't you?
- Yeah.
- But mum, when you have a girlfriend, you do much more than just kissing, don't you?

I brace myself thinking "oh boy, here we go." I keep a straight face and a neutral voice and reply:

- Yeah.

To which Beaver responds:

- Yeah. You also go shopping together, and all that. You do the laundry, and get petrol for the car, don't you mum?
- Sure thing Beaver.

Phew!

Arranounbai

2009-02-10T12:30:00.003+11:00

Yes, you are all waiting to hear how it went. So here goes...

Unlike with Beaver, we chose to send Boo Boo to a special school. The local preschool was quite happy to take her, but it would be at least another year until they had a spot for her. Also, they were rather nervous about her power chair. What if she drives over some other kids' toes and breaks one? They would have to get a full time aide for her, and that costs loads of extra money and in my eyes separates Boo Boo from the other kids, who don't have an adult tailing them the whole time. Arranounbai Special School for Children with Physical Disabilities and Medical Conditions is a purpose built school, fully wheelchair accessible, and with staff trained for various medical emergencies (the school has its own defibrillator, will you believe it) and used to a wide range of disabilities and special needs. Not only that, their preschool program runs a reverse integration which means that they also accept "normal" kids. The idea is that the disabled kids learn from the others and in turn they learn to accept disability as normal. Pretty good eh? Staff are happy for Boo Boo to bring her power chair, and the small class sizes and high teacher-staff ratios mean that Boo Boo does not need an aide, but also won't get lost in the crowd. And as luck has it, there are twins in her year (a boy in her class and his sister in the other class) who will go on to Primary School with her. How good is that?

Anyway, Boo Boo was dead keen to go. She was very disappointed to go a week later (we had to wait until she was no longer contagious with the whooping cough) and very excited on the morning. She knew "mamma would go bye bye", and then she would play until "mamma would come hi". That was ok - until the moment that mamma did indeed go "bye bye" and little Boo Boo dissolved into bitter tears. I just walked out without looking back and drove straight home. Boy, I'd forgotten how hard this is! The whole day I was on edge - and I kept hearing her in the babyphone, or so my brain would have me believe. When I went to pick her up that afternoon, I could hear her at the end of the corridor. She had driven her wheelchair up to the tray with red paint, and was alternating between crying and wanting to have a go with the paint. The relief on her face when she saw me was both sweet and painful at the same time. Staff told me she had only cried half the day and had some moments of fun - and the laptop with pictures of the day confirmed that! They were very impressed with her ability to communicate and thought she seemed like a bright little girl. We went home, utterly exhausted. She had red rings around her eyes from crying, and I was a nervous wreck.

The next day, hubby had taken a day off. The plan was for us to go for a bush walk, then have a nice lunch and pick up the kids together. Well, best laid plans...

The boys were not too happy at school drop-off. Beaver simply did not want to go. There have been some minor changes recently, and he doesn't like that. Also, the thought that Daddy had a day off did not sit well with him. Possum has come down with a cold, and was trying to convince us he had to stay at home - until he saw his friends, and off he ran. At preschool, Boo Boo wanted to show Daddy her room, and the sandpit and the water play. And then when we left, she burst into tears again of course!

Hubby and I had just got to the beach for breakfast when the phone rang. School. A tearful Beaver on the phone, and a teacher who did not know what else to do with him. So back in the car we went to pick up the boy. Hubby spend the rest of the day with him, tidying up the house and doing some shopping while I painted the gutters above the deck until it was time to pick up Boo Boo and Possum. Not quite the day off we had in mind!

Possum had a fine day at school, and really, so had Boo Boo. There had been a few tears, but all in all she played well that day. At one point she played in the toy kitchen making teas with James and Patrick and according to her teachers, she thoroughly enjoyed the attention of the two boys. That bodes well for the future when she hits her teens!

I am sure there will be tears again this week. But I am also sure that in a few weeks time, she'll be happy to go, happy to wave me bye bye.

Tomorrow

2009-02-04T12:59:00.004+11:00

Tomorrow is a big day for little Boo Boo.
Tomorrow she's off to preschool, yoo hooo.
Separation fears.
I expect a few tears.
From Boo Boo - but possibly Mamma too ...

I can do it by myself

2009-02-03T21:56:00.002+11:00

Yeah, well...

Summer Pictures

2009-02-01T22:32:00.006+11:00

Going to the beach.

Running with the waves.

Building sandcastles.

Seeing friends...

Floating ...

Blowing bubbles in the pool

And eating ice cream.

Summer!

Back to School

2009-01-29T14:18:00.003+11:00

Yesterday was the first day back to school.

Beaver didn't understand why everybody made such a big deal about it. School was fun. He knew about school.

And then he said goodbye and burst into tears. And spend most of the rest of the day in tears. Thankfully various teachers took him under their wing and he managed to get through the day. Hopefully today is better, he had a little cry when I dropped him off and then seemed to get over it.

Possum sailed into his classroom, happy as Larry (does anyone know who Larry was?).

And Boo Boo? How did she go on her first day at preschool?

Well, Boo Boo, she's at home. Waiting for the doctor to call with the results of the test for whooping cough we had done on Monday.

Life on hold...

Whoops

2009-01-19T21:10:00.003+11:00

Whoops is the word of the moment.

- We were doing well on the sleeping. And then I messed it up. Beaver kept hassling Charlie, so I said "if you do that one more time I won't let her sleep in your room." And of course he did it again. And I had to follow through. And of course he didn't go to sleep. And we had a few more difficult nights. Whoops! Thankfully, we found a compromise. Beaver now goes to sleep in our bed, and when it's bedtime for us, we transfer him to the sofa. In a few weeks he will go back to his bed.

- You see, things are complicated by the fact that Beaver has Whooping Cough. Before you ask, yes, he was vaccinated. But there is a bit of an epidemic around and the vaccine seems notoriously unreliable. Now this is not a funny cough. It can last up to six months. And as the name suggests, it comes with an almighty "whoop" when trying to breathe in. The coughing fits can last for minutes, and kids can faint (and very young children die) from lack of oxygen. Beaver coughs until he goes bright red. He doubles over, even falls over. And at times he vomits and gets nose-bleeds from the intensity of the coughing. It goes on all night, and doesn't make his sleeping any easier. It's partly why he sleeps on the sofa at the moment. His coughing fits wake up Boo Boo (not Possum he sleeps through everything) and it's easier for us to come to the sofa then go to the other end of the house to help him out with midnight vomits (and changes of bedsheets) and nosebleeds.

- Whoops also in our search for an au-pair. Yes, we have decided to get ourselves an au-pair. The kids really love having someone else in the house, and I would like the help and the company during the day. Ideally we'd like a Dutch-speaker from Belgium or Holland. I found two possible candidates through a website. They sounded very nice, both had some experience with people with a disability. So I contacted them and told them to go and read my blog to get a bit of an idea about us, and then we'd talk. Guess what? Haven't heard a thing. Whoops. I must have scared them off. This blogging business has its drawbacks, clearly. I find it strange though. I write about the funny bits, the annoying bits, the bits that make me angry, the unfair bits. But most of the time, we are just a normal family. With some gorgeous kids. Don't you think - have a look at Boo Boo the puppet show lady...

- Whoops just one more week and school starts again. This year is especially exiting, since Boo Boo is starting two days at preschool. She will go to a special school which is purpose built and fully accessible. The school is ok with her taking her powerchair, and have extensive experience with various disabilities and medical conditions. They run a reverse integration preschool, which means they also accept a certain number of neurotypical kids. And as luck would have it, two of them will go with Boo Boo to the same primary school (as they also have older siblings there) and might even end up in the same class. How lucky is that!

- And finally, whoops, I am about to take on the presidency of a disability advocacy organisation. The organisation will have to do a bit less than the previous president did - I have neither the time nor the stamina to live up to her high achievements - but I shall do my best to keep the organisation going and ready to grow. Another challenge. I wonder what adventures this will bring. Oh well, here we go...

Reality Check

2009-01-04T18:28:00.003+11:00

No dog after all. Not yet.

You remember when you had your first baby? When you were pregnant, and people kept telling you how it would change your life, and you nod your head, but don't really believe it? It's only when you hold that baby in your hands and have been through your first sleepless night that it begins to dawn on you?

People told me having a dog is like having a baby. I said yes. And thought, sure, I can take another kid. And then Kenny came home.

At first all went well. The kids loved having him here (although in all honesty, Boo Boo wasn't too impressed). Then ran around with him on the leash, playing happily. Kenny was happy to play too. Dinner was ok. Kid's bedtime was not good. Charlie bird moves to Beavers' room when he goes to bed, and suddenly Charlie was within reach of Kenny. Who thought that chasing a bird was fun - can't blame his, he's a terrier cross. Well, Charlie didn't see the funny side, and Beaver totally freaked out that the dog was trying to kill his bird. Hmm. We'd had some funny moments during the play when Beaver frightened Kenny who growled and tried to nip at Beaver. Clearly the poor dog has had some bad experiences - I'd say he'd been hit - and suffered some trauma from that. We got a sense that a rescue dog might not be as easy as we had hoped.

And with the kids in bed, Kenny was restless. We tried to feed him, but he was not interested. So I took him for a nice long walk. We sniffed and weed at every second tree, did the big business, and an exhausted little dog came home. He finally drank some water and then fell asleep in front of me in front of the TV. All good. But then it was time to go to bed.

Well, Kenny wasn't having any of that. He just wanted to go home. The playing and walking was fun. But sleeping in our house? No way.

So he started barking. Loudly. And tried to bite me.

Hubby noticed the little dog was shaking, so he picked him up, held him tight and stroked him. That helped. Doggie calmed down. It's just that an hour later, Hubby was still sitting on the side of the bed caressing a frightened dog. He'd put him down, and instantly Kenny would bark again. He would not let me hold him but barked at me and tried to bite me. So Hubby sat there most of the night with Kenny in his arms, until the poor thing was so tired that he fell into an exhausted sleep. And snored. And not just a little bit!

It was one of those nights where I came face to face with my limitations. At about four a clock in the morning I realised that we had made a mistake. As much as I want to do this, now is not really the time. We have so many other things going on - Beaver's anxiety, which will of course not miraculously go away from having a dog, Possum's insecurities about his place in the world, and Boo Boo about to start preschool next month. Hubby's business facing potentially funny times. And my wildlife work and disability advocacy work I am about to take on at the end of this month. I realised Kenny needs a lot of time and a lot of love to settle into our house. He's a very sweet and smart little dog, and he is a perfect fit for our family. I could see how in six months time we would have a happy little dog that would be a real joy to have around. But staring those next six months into the eye that night in bed, I realised that I just can't do it. It's not Kenny's fault. It's just that I can't cope with giving him what he needs and deserves right now. And the reality is that much of the work will need to be done by me, and I can't.

So we agreed that the best thing to do was to take him back that very morning, before we all got too attached to him and he settled into our house and family. The kids were disappointed, mostly so Possum, who had really formed a bond with Kenny. Beaver was happy with the decision after Kenny had another growl at him and tried to catch Charlie again. Boo Boo couldn't care less. Beaver did shed some tears over his worries whether Kenny would find a loving home, since clearly his life had been troubled - we had to explain to the kids that the dog had been mistreated by his previous owners so that they understood that Kenny wasn't being mean or nasty but just scared. He does have a gentle heart, that boy.

I bawled my eyes out when I took him back. Kenny however was happy to be home. He sniffed excitedly when he came out of the car and realised were we were. He went straight in to play with his doggie mates, and never looked back. Probably just wondered why those doggie walkers wanted him to sleep in their strange house that evening.

I do not feel proud about this. I do feel like I deserted a loving and well-deserving dog. And I do feel like a total goose for not having listened more carefully to people's warnings. And sure, I feel ashamed for giving up so quickly.

But I know it was the right decision.

There will be a time that we bring home a rescue dog to add to our family. Just not quite yet.

We've had a few big talks over the last two days. This year will be one of consolidation. Getting the kids settled at school and preschool. Starting the advocacy work, slowly but steadily. And getting Hubby's business on a sound footing. And in three or four years, when Boo Boo is at school and Beaver is mature enough to understand the difficulties of settling in a dog, we will go back to the doggie rescue place. And do it properly, knowing what lies ahead. And we will only go when we know we are ready.

I still feel sad about it.

I am sorry Kenny. You are a good boy and deserve better. Hope you find a loving home soon.

Kenzo is coming

2009-01-01T20:57:00.007+11:00

Ok. So he's not exactly what I had in mind. He's not exactly what I was thinking about. He's probably not the one I would have picked out of a crowd.

But here is our probable new family member: Kenny.

When we got to Monika's doggie rescue today, we met a big shaggy old grey dog. The kids loved him straight away. He was no rescue dog though but someones pet. But then when the first possible dog was brought up to us, she jumped and barked full of excitement. Boo Boo pulled a face, Possum hid behind his Oma, and Beaver ran back to the car. Not a good start. There was no way Beaver was coming back. So there was some discussion between Monika and her volunteers. And then they brought out Kenny. My first thought was "Oh no, not another little yapper. And such a stupid name" (you know, that dunny guy movie spoiled it for the name Kenny!).

But Kenny was quiet and sweet. Possum was straight away happy to pat him, and even keen to take him for a walk, holding the lead. Beaver was instantly smitten with Kenny. Kenny ignored Boo Boo's powerchair and the other dogs and came walkies with us, happy but not overly excited. Didn't bark once. He stood out from the crowd. Hubby liked him straight away too. And I was warming to him. Thinking, he's small. Compact. Sweet. Easy to transport. Happy in our fenced pool area for a while if I need to go shopping. Possum is comfortable with him. He doesn't bark much, so Beaver likes that. He's not scared of the wheelchair.

Yes, I still want a beautiful Golden Retriever. One day. But I had to admit, Kenny was a perfect fit for our family at this point in time. And then he came up to me and put his two paws on my legs and looked at me lovingly.

Yes, a smart little dog. Knows where his bread is buttered. So Kenny it is.

Tomorrow Hubby will go to the hardware store and get some wire to put along the pool fence so Kenny will not be able to squeeze through. And when that's done, we will go and pick up Kenny.

Who will be renamed Kenzo (a perfect big Aussie name for a little dog).

Dog

2008-12-29T12:38:00.002+11:00

We're looking for a dog.

Beaver's anxiety has subsided a bit. He is sleeping again. He takes his time falling asleep, but at least he does it, and doesn't wake up endlessly. But we have a long way to go yet.

One of the anxiety solutions that crops up again and again is the idea of getting a dog. You know, a boy and his best mate, and all that.

The benefits of owning a dog are well known. And there is a reason people train companion dogs for people with a disability. There is no doubt that Beaver would benefit from having a dog. And there is no doubt our pet cockatiel Charlie would benefit from us having a dog. Currently, Beaver treats her like one, and Charlie's not always too impressed with being hugged and kissed and cuddled.

There is one major issue we faced though. All my life, I have been allergic to all furry creatures. Dogs. Cats. Horses. Even mice. All my life I have wanted a dog. But I only ever had birds, since they were the only safe animal for me (well, not counting a goldfish, but how boring are they?).

Well, guess what?

I've had hypnotherapy for my dog allergy.

And it's gone.

Let me just say that again.

It's gone. Gone!

I went to the vet yesterday. Normally I snivel and sneeze within seconds of walking in. I sat there for about half and hour while the vet examined (and euthanised) a little ringtail possum with a spinal injury. I talked to the man sitting next to me with his injured cat. I patted the cat. I patted two big Labradors who walked in. Nothing. Then I touched my face with my unwashed hands. Nothing.

You can not imagine how exited I was walking out of that vet yesterday.

So. We are going to buy a dog.

The big question is, which one.

I like the idea of a Golden Retriever. They are beautiful dogs, known as very obedient and excellent family pets. They were bred to retrieve ducks etc. shot after hunting, and so if they pick up other animals, they do so gently. They like to swim. And although they have long hair, they shed relatively little - less so than a short-haired Labrador.

But they are expensive, and older dogs are hard to get (I don't really want to do the puppy thing if I can avoid it!). And they may need a fenced garden.

I also like the idea of a rescue dog. You know, giving a dog another chance at a good life. They are way cheaper. And they are older and you know the animal's temperament. Problem here though is two-fold. There are mainly smaller dogs and most of them are what I - surely unfairly but still that's how I feel about them - walking barking toilet brushes. Or oversized rats. And of course some of them have had a rough life, and I'm not sure they would be OK in our already busy family life.

I have e-mailed some retriever breeders and kennels to see if any of them have older dogs for sale. Of course I thought about the companion dog thing - but the waiting list for one of them is about two years and I don't fancy waiting that long... Also, we can afford to buy our own dog, so it would feel wrong to take one of those very special dogs.

We might end up with a rescue dog we fall in love with (we're planning to go and have a look later this week). Or we might end up with a little puppy after all.

Part of me is really excited to finally have a dog. Part of me thinks "Gosh, do we really need another creature in this mad household?" But there is no doubt that all three the children would greatly benefit from having a dog, and hubby would have a companion to take on his early morning walks.

The things we do for our kids eh?

And a Post Script for Oma Helma: Ja, het werkt echt. Als we inderdaad een hond kopen betalen WIJ voor jou hypnotherapie om van jou allergie van af te geraken. Hier of in Belgie, dat is eender. En ook voor Tante Anita als dat nodig is. Het werkt echt hoor, net zoals stoppen met roken...

Wii Kids

2008-12-22T21:22:00.005+11:00

We bought a Wii.

We have studiously avoided buying any of these game things before (whatever they were called, Game Boys, XBox whathaveyou). I figure kids nowadays need less time sitting in front of the TV than more. But the Wii is different.

It has been used in rehabilitation and as a physiotherapy tool. Unlike with other games, you hold a remote which picks up on your movement and translates that into the movement on the screen. So it's far more active.

To give you an idea, here is Beaver boxing (with a remote in each hand). And you know what? He was pretty good too. Very fancy footwork. And a mean right hook punch.

Possum is more a golf player, and also surprisingly good at the game, given he's never even seen a game of golf played. He also likes the car racing games, of course. W

And Boo Boo? She loves them all. You should see her "boxing" her little arms around like a mad woman. It's a sight to see...

Transformer

2008-12-16T21:21:00.003+11:00

I don't know what's going on with that boy at all at the moment.

After the big sleeping showdown, we've had a bit of a turn-around.

On Tuesday, Possum had a playdate with one of his classmates. I intended to drop him off, then take the other two kids to release a Blue Tongue Lizard, go to a cafe for lunch, possibly shop a bit, and then pick up Possum. As it turns out, there was another classmate, and his mum was there, so we all ended up chatting. Later another mum joined the group. And we mothers, we chatted. And the kids played.

Now if you know Beaver a bit, you know how amazing those last two sentences are.

You see, normally Beaver sits with me and the mums. He joins in with our chats. Tries to steer the conversation towards one of his favorite subjects of the moment.

But no. Beaver was playing with the other kids. For two hours, I did not see that boy once. Then he came to ask where the toilet was, and off he was again. He played with the other kids. The other boys. He played with transformers! And bionicles!

As if that is not a miracle in itself, he told me when we got home that he was now going to play with boys toys, and wants a bionicle for his Christmas. And he gave his handbag away to his brother. Can you believe that? His handbag!

He told me he's still into boots and lipstick, but also transformers and cars and bionicles. He still likes girl things, but he now also likes boy things. Ok.

And it gets more amazing.

He's sleeping!

That night after the big showdown, he slept straight through. After a big chiropractic reflexes adjustment (thank you Mel! And it was lovely to see you!!) he slept through again. And all the other nights, he's been up once, done a wee, and came to Dad to take him back to bed. And promptly went to sleep again.

Mind you, during the day he's a handful. Pestering the birds. Pestering his brother. Pestering me. That boy, he's full of testosterone at the moment. I wonder if it's that that makes him play with the boys and sleep a tired sleep afterwards.

In any case, it's an interesting and not unwelcome change!

That boy, he never stops amazing us, one way or the other...

3:18

2008-12-12T11:32:00.002+11:00

Earlier this week I'd had enough.

I told Beaver that, after two and a half months, I would go back to sleeping in my own bed. He wasn't happy, but a kind of compromise was reached that he could sleep with Charlie the bird in his room. For a few nights he went to bed ok, although as soon as he would wake up in the night, generally between 12 and 2, he'd come over and end up sleeping the rest of the night on the sofa.

Last night I said:

- No more sleeping on the sofa. You want to be a big boy, you sleep in your bed like a big boy.

Big boy said:

- No.

He didn't like that.

So we got him to sit on the living room coffee table. Not in the comfy chair or on the sofa. No, sitting in the most uncomfortable spot. He still listens and stayed there. While we were lying in the bed, waiting for him to fall off the table asleep. And waited.

Let me just say my son is more stubborn than me.

At about two o'clock in the night, I couldn't take it any more and ended up a blubbering heap sitting on the kitchen floor bawling my eyes out. I have to admit, I am exhausted, and I am at my wits end. All I can conclude is that I am not very good at this parenting business. Bummer it's too late for a career change. Hubby heard me of course and coaxed me back to bed with a stack of tissues.

Back to the waiting.

At 3:18 Beaver came into our bedroom.

- I am ready to go to my bed now Daddy.

So hubby took him. And we all went to sleep. Until 6:30 that morning, when Beaver was up again, bright eyed and bushy tailed, ready to start the day.

Oh my!

Standing Up

2008-12-11T21:49:00.002+11:00

We went to softplay today - I needed some stuff from the Mall, and it was a rainy sort of a day. The boys like softplay very much, and Boo Boo mostly enjoys the ballpit.

We all climbed up to the top level and gathered in front of a suspended tunnel. Possum was contemplating crawling through but wasn't entirely sure.

Suddenly two kids came from around the corner.

- We are lions, and we're not letting anyone in they shouted. To which Beaver replied

- Nonsense. We are tigers, and we're coming in.

Hearing the word tigers, Boo Boo roared, and we all chimed in. The kids looked stunned. Then Beaver climbed in. And the kids ran away.

I was shocked.

I think this is the first time I have known Beaver to stand up to strange kids, let alone strange kids that challenged him. I just couldn't believe it!

And then another amazing thing happened. My two boys - who normally would happily murder each other - ganged up against those two kids, and spend the remaining time chasing them, and being chased by them. A united sibling front. Just when I thought it would never be possible.

In the end, the little girl threw Beaver a final challenge on her way out.

- I'm four you know, she said.

- Yeah well, I'm eight replied Beaver. And then went for the final kill to the crestfallen girl

- And we're still playing, and you are out and going home, ha ha.

My son the bully! Just being a pesky little boy to some other kids. And staning up for himself. Can you believe it?

Holiday

2008-12-05T13:02:00.006+11:00

It's hot. About 32 degrees.

The pool is warm. We have new swimmers and rashies, ready for the season.

There are mangoes and strawberries in the fridge, and icy poles in the freezer.

We bought a large box of sunscreen and pulled the hats out of the drawer.

The Christmas shopping is done (only wrapping left).

And most importantly, school's out.

7 long weeks of Summer Holdiay!

The kids need it...

Mum will survive it...

Anxiety

2008-12-03T13:22:00.002+11:00

Beaver is in the middle of a serious bout of anxiety attacks. He's struggling with his difference, and is still not convinced it's not his fault. He's not a happy boy, and his behaviour reflects his inner turmoil.

Here is what he says:

- I hate my life
- I am a bad person
- I don't like people talking about me and my CP
- I hate myself
- I feel sorry for my mum and dad, that they had to have me.

Well, what the hell do you say to that!?

He's to anxious about bad dreams to go to sleep - I have slept in his room since October now. He's obsessed about being late. And he's obsessed about what happens next. As in, he wakes up in the morning, and ask ten times "what's for dinner?"

We knew this was coming. But we were kind of expecting it in his teens.

On Monday we took him to a psychologist at the Macquarie University Anxiety Clinic. Thankfully he loved the opportunity to talk to Doctor Zoya and is happy to go back next week and the week after. And the summer holidays start tomorrow.

I hope this helps. God, I hope this helps.

Sad Possum

2008-11-24T20:41:00.006+11:00

My sad little Possum. He's holding a little Ringtail Possum that had to be euthanized, it was way to young to survive the death of its mother (click here for the full story).

Possum was very sad to hear nothing could be done. He decided to say a few prayers for them, and promptly recited the Peace Prayer in Sanskrit, very very quietly.

Beaver said he did not want the possums to be killed and, very perceptively, noted that "They didn't have much of a life". He too said a prayer so that they may have a good next life.

Doing this work as a Wildlife Carer is certainly introducing the children to Life and Death (apart from such issues as the human impact on our wildlife). I tell the kids in simple terms what happens. I told them that they will go to the vet who will kill them with some very special green medicine that takes all their pain away quickly and then they die.

With Beaver not wanting to go to sleep, I feel I can not use words like "go to sleep" or even "drift off". I don't want him to fear that he's going to go to sleep and die. Besides, I don't really like euphemisms like "pass away" and all that. It seems to negate death, and really, death is such an important part of life, how can we deny it? Without the one, there would not be the other, and dealth, like life, deserves respect. And to be called by its real name.

At the same time, I have to mention to them that it's done with an injection. The stuff the vets use is bright fluo green (hence it's called "Green Dream") and I tell them it's special green medicine. Thankfully most children's medication (cough medicine, paracetamol etc.) is not generally green! And with Beaver's fear of nightmares, I don't use the term "Green Dream" either!

I realised before I started this that parenting would be tricky. But why did no one ever tell me that you need a linguistics degree?

Birthday Hit

2008-11-19T20:34:00.005+11:00

The song was a hit.

The musical was a hit.

The movie was a hit.

And as a birthday present for Beaver, it was the biggest hit of them all.

The boy enjoyed opening various presents, some that had travelled a long way to get to him.

But the very best one was the Mamma Mia DVD that I had bought for him in the local supermarket some weeks ago.

He's seen the movie twice in the cinema. He's acted key scenes out many times. He sings the songs in the car on the way to school in the morning (I know! And the poor boy has inherited his mother's non-musical voice). And now we watch the DVD most afternoons after school. Sometimes twice. Boo Boo and Possum like the movie too. Boo Boo has even learned to say "Mamma Mia". And sometimes Mum and Dad turn the TV right up, and we all dance in the living room. It's a sight (and sound) to behold.

And no, I won't post a video of that.

Mamma Mia indeed!

Chickenpox

2008-11-12T13:42:00.002+11:00

It seems that both Boo Boo and I have come down with a case of the dreaded Chicken Pox.

For a day and a half, I was hoping that we had been bitten by bird lice or mites (see my new blog http://wildliferescuestories.blogspot.com/). But I went to see my local GP, and she doesn't seem to agree. Apparently it can take a week or more between feeling ill and the appearance of the first spots. Which makes me wonder if last week's virus that caused my vertigo may have been the early stage. Who knows. In any case, we're contagious right now...

Which means a seriously reduced social life.

It means a forced holiday from the therapy rigmarole.

It means no family get-together to celebrate Beaver's birthday this Sunday (thankfully he decided not to have a kids' party and wants to go to the movies with his Dad instead).

It means a very attractive rash on my neck, chest and arms, and Boo Boo's face, neck, ears and tummy.

And off course, it means lots of itchy moments, trying not to scratch.

Oh parenthood. It's full of surprises.

Wildlife Carer

2008-11-11T20:57:00.003+11:00

Some people have been shaking their head at me.

Not busy enough yet? they ask. Want to become a saint? Can't get enough of being a carer?

Well, bollocks to that.

When I first came to Australia hubby and I toured around for some months. Like most new visitors I was amazed with the native wildlife - how different it was, and how much of it there was around. And I vividly remember my first roadside sign that asked people to call a certain phone number to report injured local wildlife. Hubby explained to me that if you hit a kangaroo with your car, you should go and check the animal - including its pouch for joeys. There were people out there that would take care of the animals and nurse them - or rear them in the case of babies - until they were ready for release again. In Alice Springs we ran into a lady that carried a baby kangaroo with her in an old tea cosy and fed it every few hours. What a great idea, I thought. I would like to do that!

So two weekends ago, I did the basic training course. And now I am a registered Wildlife carer for Sydney Wildlife this new journey on my new blog:

http://wildliferescuestories.blogspot.com/

Shakespeare

2008-11-10T19:26:00.005+11:00

Last week was Shakespeare Festival, the long awaited week in which the children perform their play on stage at the local theatre.

Possum did phenomenally well. Last year, he couldn't sit through his brother's performance without whining. What a difference a year makes! He stood on stage and loved every minute of it. And he watched the other classes' plays with great interest (especially the sword fighting scenes). He didn't want the festival to end.

Beaver was a bit more of a mixed bag. He knew his lines perfectly, but on the night, he got nervous and swapped them around (thankfully he wasn't the only kid in his class who got his lines muddled a bit). But the biggest problem was that he developed some sort of stage vertigo. On the day of the general rehearsal, he could not walk onto the stage for fear of falling off. I don't know where this came from, he had no such issues last year. Maybe it was some sort of performance anxiety. I took him to the stage a few times to run around on it. At home, I got him to stand on the coffee table and proclaim his lines. He stood on a stool on one leg. Yet as soon as he got on the stage, he got wobbly. Oddly enough it only happened while he stood still, not while he was moving on the stage. He kept bending down as if he was about to fall. His teacher solved some of the problem by getting him to hold hands with the children next to him, and in the dance scene, he was placed to the back of the stage. Most people in the audience noticed nothing in particular. They just assumed that's the way he stands. Lots of people commented on how well he did. Maybe they were truthful, or maybe they were just being polite. But I knew better, and I found it painful to watch. I was praying the whole time that he would manage to stay upright and not fall down. Phew. It was hard. But, he got through it, and seemed to have enjoyed it. He did not want to come off the stage, or leave the theatre. And already wants to know which play his class will do next year. We have enrolled him into drama classes on Saturday mornings, in the hope that it will increase his confidence (and he does love drama, that boy).

So, here are some photo's my Father-in-Law took. There is no video or flash photography allowed in the theatre (although both were taken by a professional photographer for us to buy later in the year) so these shots were taken without a flash and are a bit grainy. Still, they give you an idea.

Possum (aka Puck) in A Midsummer Nights' Dream

Beaver (prologue and Count Paris) in Romeo and Juliet

Obama 08

2008-11-07T10:28:00.002+11:00

OK. So I'm not an American. I've only ever been to America once, and that was for about 2 hours. We were visiting Canada, and popped across for dinner. The restaurant had a sign saying "no guns allowed" and a porn pictures vending machine in the toilets. I wasn't too impressed (although this is by no means a verdict on the whole of that country).

But what did impress me was US President-elect Obama's victory (can't deny that I had a little tear in my eye) and his victory speech. It was good. In fact, it was impressive. Here are the opening lines, with the bit that is so amazing:

"If there is anyone out there who still doubts that America is a place where all things are possible, who still wonders if the dream of our founding fathers is alive in our time, who still questions the power of our democracy, tonight is your answer. It's the answer told by lines that stretched around schools and churches in numbers this nation has never seen; by people who waited three hours and four hours, many for the very first time in their lives (...) It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled - Americans who sent a message ...."

Yeah!

A presidential victory speech that mentions disabled people! Wow.

And the guy has a pretty impressive disability policy too!

Listen and learn, Australian politicians!

Heartbeat

2008-10-26T19:31:00.002+11:00

We've been struggling this week.

I've been in bed mostly, with a nasty case of the gastro which made me very weak, dizzy, and gave me vertigo. Not funny. I couldn't do a thing. I would lie in bed, holding on to the wooden sides of the bed frames. Of course I knew I was in bed and wouldn't fall, but I couldn't help myself. At times, I thought I would faint. Seriously not funny. I spend three days in bed, with Hubby, Jessie and Oma and Opa coming to the rescue, looking after my house and family for me. I don't know what I would have done without their combined efforts... And many many thanks are due.

Hubby is stressed at work (all these stock marked crashes aren't helping, so can you all stop selling now please?). The stress gave him insomnia. The insomnia made his heart race.

Hubby went to the doctor, who agreed that it was stress. Still, best to do some basic tests on the heart - you never know. Two out of three kids with a disability, big mortgage, running his own small business - does sound a bit like a heart attack stuff, doesn't it?

But not to worry, all was fine. Blood tests fine, heart scan and monitoring fine. All hunky dory. Just stress.

When Hubby went for his last test, they hooked him up to some equipment. Suddenly he heard his heartbeat. And promptly burst into tears.

The technician came up to check if he was all right. Yeah, yeah, he was fine.

Thing is, when he heard his heartbeat, it took him straight back to that very first moment at the midwife's. That first time you hear your children's heartbeat. That very first real connection (well, for men, certainly. Most of us women have been heaving for a few weeks by then and have a real connection thank you very much). Hearing his own heart beat brought back the memory of hearing his children's' for the first time. And my lovely sweet husband burst into tears.

Ah, that sooo sweet, said the technician. Make sure you tell your wife

He told me.

And I'm telling all of you. Because it really is sooo sweet.

Mixed up

2008-10-20T20:17:00.003+11:00

Life at the age of nearly eight must be confusing.

The boys go to a school that is a bit unusual. It's run by a lovely mob called The School of Philosophy and I could probably best summarise them as Christians that follow a Guru from India. Combining the best of the East and West, and all that. So the boys have been introduced to this concept of "God" and some various off-shoots such as Jesus, Mary, Noah, and Moses and such figures. All of which get mixed up (once Possum insisted that Mary was God's mother and Moses was his brother. Hm).

At home we are Buddhists, and as such, we don't believe in an external entity called "God". We strongly believe in Karma, and off course Reincarnation.

We talk about religion regularly. At school the kids read the Bible and the Badvad Gita , and regularly encounter stories from the Aboriginal Dreamtime. We explain to them that there are many other religions. Beaver has a godmother who is Tibetan Buddhist and a godfather who is Jewish, and Possum has Tibetan Buddhism and Amanda Margi followers as godparents. We're trying to find a Christian and/or Muslim to take on a similar role for Boo Boo - but that's another story for another time. We tell the kids the Divine is a treasure, and there are many different treasure maps for people to find their way, and they will all have to find their own in life. This in fact is very easy to explain when you have walkers, wobbly walkers and wheelchair users in your family. One can just run up, the other needs to take the stairs with railings, and the other takes the ramp, all to get to the same place, all in a way suited to who they are.

The boys have a bit of a thing about arguing who and what they believe in. Generally Beaver is a God follower, while Possum goes for Buddha. Except if their brother states a strong opinion on the other idea, in which case they are both happy to switch sides just to be in opposition to their sibling. Yep. Sibling rivalry trumps religious loyalty every time.

Anyway.

Beaver has been thinking about the whole "why do I have CP " thing a fair bit again. Since I told him in our latest discussion that it's not his fault he has CP he's been very interested in finding out whose fault it is then. He wasn't too happy with the explanation that in a way it was Mummy and Daddy's fault, because he knows we didn't consciously chose this for him, and if we could take it away, or take it ourselves, we would.

So yesterday in the car, Beaver said to Possum"

"It's God's fault that I have CP. He made me like this. I do hope that he will not give me CP in my next life though, I'm really fed up with this CP thing."

Who said all these various religions can't happily co-exits? Even in the mind of a nearly 8 year old...

Surreal

2008-10-12T16:13:00.005+11:00

Last week, my sweet little possum had a friend over for a play date.

The boys had fun. At one point, they were busy in the sandpit, making a castle.

Suddenly, Possum came out with the opening lines of his role in the coming Shakespeare play.

And his mate responded with the next lines. Possum joined in. These are not their lines, they belong to some girls in the class. But the children have practiced their play for the school's big Shakespeare Festival in November so often, that the kids pretty much know the whole piece.

And so, we were treated to two five year old boys, sitting in a sandpit, reciting an abridged version of "A Midsummer Nights' Dream".

Wonderfully surreal!

Puddle

2008-10-08T19:47:00.007+11:00

What does a two year old do when they see a puddle? Jump into it.

What does a two year old who uses a wheelchair do when they see a puddle?

As you can see from the tyre tracks, many many times.

In and out of the puddle. Fun!

Yee Haa !

Break

2008-10-02T19:16:00.004+10:00

It's been a busy first week of the school holidays.

Yesterday, I went to the NSW parliament, a visit which made it into our newspaper.

After that, Hubby and I went off on our own. We put the kids to bed and left them in the capable care of my parents, while we had our second night away from the children in the last 8 years. The last time we had a night away we made Boo Boo, so we've been a bit reluctant to do this sort of thing again but we're safe now, so off we went. It's a bit sad, isn't it. I've had 4 nights away from my children in the last 8 year, two of which were with my beloved, the other two with a dear friend. We resolved yesterday that we would aim to make this an annual event.

One of the reasons we would like to do this again lies in the venue. You see, we have long known about the gem that is the Q Station (as the project is in the hands of a friend of Hubby's sister) but had never got round to visiting the place. Well, all you Sydneysiders out there, it's a must do.

The place is spectacular, a wonderful restoration of a heritage place (the old Quarantine Station where new immigrants were kept for weeks on end to keep diseases out of the country) and the view is stunning.

Have a look at this picture of Hubby outside our room door. That is Sydney harbour reflected in the window of our room, and Manly behind Hubby.

Go. Book now.

And tomorrow, we're off with the whole tribe - us five plus all the grandparents and aunties and uncles and cousins - for 5 days to the Kangaroo Valley.

I can't wait.

I have to admit, we've had a hard year. Moving house, renovating a house, buying expensive equipment, and in amongst all that some worries with Hubby's business. We are all exhausted.

So.

See you all next week....

Loser

2008-09-22T20:34:00.005+10:00

Beaver came home from school today all upset.

There have been a few small issues recently, and today they came to a head. It might be because he's got a bit of a cold and is struggling. It might be because he hasn't been sleeping well recently. it's the end of the term, and he's exhausted.

His remedial teacher has been talking to his grade teacher to change some of his homework (in essence, give him less). The kids in the class have been given their next maths book, and he has not. And we've just had the sports carnival, always a stark reminder of his difference and limited physical abilities. It may be that many of the parents and teachers and staff at school admire him for his guts to have a go, but he's acutely aware that the kids have no such insights. And like any boy, he just wants to run and win. Today the kids played soccer, and some boys did not want him in his team.

So Beaver came home in tears.

"The kids say I'm a loser".

"I don't want to be different."

"I am the slowest runner in the school".

"I don't want to have CP."

"There is nothing special about me."

"I want to do the same work as the other kids. I need some help, but I want to try to do it."

These are just some of the things that came out. Possum was doing his homework with Jess, Boo Boo was chucking a tantrum - so I took Beaver to our bedroom and had a long chat with him.

I told him that, yes, he was the slowest runner in the school. But also the bravest.

I told him that maybe he wasn't great at soccer, but he's a good actor.

I explained to him that CP is part of his life, and we have to find a way to live with it. That everyone is different, and we all need to work out what we're good at in life. We discussed maybe trying some special needs soccer. Or maybe another sports, like archery or something that the CP Sport and Recreation Association offers. And I promised him that I'd have a talk with his teacher about the homework issue, and that maybe we can do his special homework and then I can help him with the other. I explained to him that our upcoming appointment with the Physical Disability Clinic specialist is to help him manage the effects of his CP, and to make living with it easier. And that it will not ever go away, as the doctors have not found a medicine to make it disappear. But they are trying to find one, and in the meantime, we have to just live life as well as we can, and do what we can, and try, and enjoy life, and be happy.

I told him that he was special in my eyes, because I love him very much.

And I told him that his CP was not his fault. At which he looked at me in total and utter surprise. I told him that it was mum and dad's fault, because when we made him, we made him with his deep dark eyes, his thick hair and his CP. It had never occurred to him that having CP might not be his fault! Oh God! Poor lad!

How could I have missed making that point clear to him earlier !?!

Run boy run

2008-09-17T20:25:00.007+10:00

We had fun at the school sports carnival today.

We are not a sporty type of family, but we do enjoy a good laugh. Possum was very worried about not winning any races. Beaver was a bit dejected knowing he would win no races. So this morning I talked a lot about how everyone has different strengths, about the fun of participating, the courage of taking part even if you can't win, and having fun, and about entertaining the audience if you know you're going to loose anyway.

So come race time, Beaver ran. He ran the 50 meters

and then he ran some more. He ran the 100 meters

And, believe it or not, he then ran the 400 meters.

I was so stunned to see him in that race that I forgot to push the "record" button on my video camera!

Pretty soon into the race, Beaver lost puff. I ran towards him, and got there just when he had to stop because of a stitch. I lifted him on my back, and together we finished the race!

In the mother's relay race, our team was one person down, so in the end I had to run twice. Needless to say we didn't win.

But we had fun.

Tomorrow, I will post some footage of the egg and spoon race, where you will see all three children take a starring role...

Rare Moment

2008-09-17T11:04:00.002+10:00

All three kids - and even Charlie bird - playing together....

Tooth Trouble

2008-09-15T20:29:00.002+10:00

I'm sorry about the silence here - I've been having some teeth trouble.

I had to have two wisdom teeth on my left pulled two weeks ago (wasn't a very nice experience) and while the top one healed fine, I managed to loose the blood clot in the bottom one after Possum accidentally whacked me in the face while we were playing, and I ended up with a nasty case of dry socket. It basically means that there is a hole where the tooth was, with the bone exposed. And the whole thing is now healing much slower than if there had been a blood clot protecting the bone and providing a structure to heal around. Awww. This is not funny, and seriously hurts.

The only up-side (well, sort of) is that I've been off in la-la land and legally high for the last week. I've had to take high levels of panadene and codeine, and got through this last week in a daze of pain and drugs. I don't think I was a very nice or responsive person to live with ...

Anyway, today is the first day I have managed to come out of the fog. Phew. Now I have some bills to pay, load of e-mails to reply to - and then some blog posts to write!

Can't wait to get that last remaining wisdom tooth out - NOT !!!!

Awards

2008-09-06T20:09:00.005+10:00

Who's a lucky girl then!

This week, I have been given two blog awards.

The first award came from TherExtras. This award for excellence in the expression of values in a blog! How is that for a great award! Mind you, it needs some serious thinking on my part before I pass it on. The rules of this award (posted in the comments section) state that I need to share 6 values that are important to me, and 6 that I don't like before I pass the award on. Hmm. Ready?

Values that are important to me: Inclusiveness, tolerance, environmentalism, generosity of spirit, staightforwardness and helping kindness.

What I don't like is: intolerance, discrimination, hypocracy, greediness, selfishness and any form of trying to impose values on others

That all sounds a big grand and serious, doesn't it?

The second award I received this week is called "Sharing the Love" was kindly given to me by Mommy-Dearest over at The Quirk Factor.

The award is for blogs that you love, that uplift you. You know, the blogs that everyone should read, so you want to share the love? It's very nice to receive an award like this, and to know that there is some person out there in the bloggosphere that likes what I write! Especially from someone whose blog I love!

The trouble with these blog awards is, though, that you're supposed to pass them on. I don't know that many bloggers, though, and those that I do know are such "big" bloggers that it feels like an intrusion to give them an award. Wil lthey not think it too cheeky of little old me? Will they have the time to pass the award on? Will they get annoyed that I'm bothering them?

So, I feel very pleased with my awards, but slightly awkward at the same time...

But still, rules are rules (although I'm going to cheat a little and hand out only three awards each).

I bestow the values award to Equal Not Special, Terrible Palsy and Chewing the Fat of course.

And the "Sharing the Love" will have to go to Life with Ben, Hey Dad and a blog written in Afrikaans called Windpompe en Vygies. No doubt about that either.

Called to the Teacher

2008-09-05T08:33:00.006+10:00

I took the boys to school.

Possum's drop off was straightforward, he blew me a kiss and ran off with his best friend. Beaver however still likes to be taken to his class.

When we got there his class teacher, Mrs. D., called me over from the other end of the playground.

"Mrs. Fabig" she shouted, "I would like to have a quick word with you before you go!"

Oh dear, what's happened? I thought as Mrs. D. came striding over.

Mrs. D. asked Beaver to join us, and off we went to his desk. She winked at Beaver and pulled out his Scripture book.

"I really wanted to show you this" And she opened the last page in the book. I looked at it blankly. Some Year 1 kid had written some lines about "a time to live and a time to die". So?

Then Mrs. D. told me in a proud voice that it was in fact Beaver who had written these clearly recognisable words. He had copied them from the blackboard in the same time as the other children. The words were clear and well formed. They were good. Very good. In fact, according to Mrs. D. some of Beaver's class mates in his little scripture discussion group clapped spontaneously when they noticed how well Beaver had written his words.

Beaver looked mightily pleased with himself.

Mrs. D. was proud as punch.

She turned around with slightly watery eyes and gave me a big hug.

"It's happening" she said. "He's got it, it's happening. His writing is really getting there."

Mrs. D. was proud as punch.

I was proud as punch.

Messy Muffin Morning

2008-08-27T21:16:00.009+10:00

Hubby truly is a brave man.

On Sunday morning, he decided to make some muffins. Beaver was keen, and went to the shops with Dad to buy eggs, the only missing ingredient. Then he lost interest, so Possum and Boo Boo were the remaining two bakers. Now, Possum has done this many times and is quite the muffin maker. He knows what to do. But this was the first time for Boo Boo.

So, here is how to make apple and cinnamon muffins as demonstrated by Boo Boo.

First, you sift the flour, mix eggs and cinnamon and sugar and whatever else Daddy has put in a bowl in front of you, and mix the whole lot together.

Then you add apples - and don't forget to eat some, and then some more.

Mix it all together, and spoon into baking tray.

Then Mamma takes you in the shower to wash the flour out of your hair and the muffin mix from between your fingers, while Daddy pops the muffins in the oven. Daddy and Possum play cars while you and mum get dressed, and Beaver pretends to read a Bible (the only Bible we own is in Ogoni language and not very useful for him).

Then you eat the muffins - and need another hose down.

From Dog to Diva in 10 Minutes

2008-08-21T19:59:00.003+10:00

This girl, she's fun!

Cannot cope

2008-08-19T21:38:00.005+10:00

I've been painting and thinking today.

I've been painting the window sill and back door of the garage today. I find it very relaxing to move the brush up and down, each brushstroke another small step to changing the colour scheme of the house. And while I concentrate on keeping my brush steady and straight, away from the glass window or brick wall, my mind goes wild. The more tricky the painting, the wilder my brain goes. Backwards and forward through the different sides of the argument, while the brush goes slower and ever more steady along the brick wall.

This morning, I read another one of Dave Hinsburger's excellent posts on eugenetics and screening out babies with a disability before I cleaned my brushes. One of the comments he collected stuck a chord – and stayed in my head:

Some people simply cannot cope (her emphasis) with a physically or mentally handicapped child, for many complex reasons and it's not my place or anyone else's to pass judgement on them.

I think this one stayed with me during my painting session because this is one of those comments we get a lot.

You know the "I don’t know how you cope" comments. I never know how to respond to such things. I generally say something non-descript about how we all get our challenges in life or some such nonsense.

Today, while painting the left garage window Pearl White, it hit my how I really want to respond. People say they couldn't cope with a disabled child. Well, it's bullshit.

Excuse the language. I know it's not very diplomatic, but that's just what it is.

If you had told me 8 years ago that I would have a child with a disability, I would have told you that I wouldn't know how to cope.

But you know what?

You grieve for your child, for how much harder things will be in their life. You scream and cry. And then at some point, you move on, and you cope. What other options are there? Like with everything in life, you somehow eventually simply cope.

I think it's called growing up.

Perth

2008-08-14T08:51:00.002+10:00

On the Monday afternoon Possum and I were talking after we finished his homework. The conversation went to Oma and Opa, who are soon coming to visit us from Belgium. He wanted to know how many more weeks until they are here, and how long they would stay.

Possum was pleased to hear it's only 3 more weeks till Oma and Opa arrive, and even happier to hear that they are staying for nearly 7 weeks. Then I told him that they would be going to Perth for a week and a half while they are here in Australia.

And Possum, tired from his first day back at school after being sick, promptly burst into tears.

And said, in a sobbing voice:

"They love Perth more than me!"

The cost of language

2008-08-10T21:34:00.009+10:00

It's been an interesting weekfor me. I've been at the receiving end of a cyber-bollocking. I've not been sure how to react which is why it took me some time to write about it. I'm still not entirely sure about all this - but it's time to post. Maybe the process of writing will help to enlighten me further.

An e-mail group I belong to has been vigorously debating the post-modern idea that the personal is political and the political is personal.

You see, some issues came up on the group that have dealt with language around disability. I have been very vocal on language issues and have very strong feelings about this. I don't like it when my children get reduced to their disability. I encounter people on daily basis who refer to my kids as "the CP boy" or "the little CP girl" and to us as "the CP family". The same battle is fought by other families who try to eradicate terms such as "the Downs girl or "the autistic boy" because they reduce a person to their disability. I mean, come on, you wouldn't find it polite to refer to your colleague as "the breast cancer woman" your sister as "the bipolar girl" or your grandfather as "the Alzheimer guy". Make the analogy with race, and see if it sounds discriminatory…

I constantly have to tell people that my kids are kids, and we are a family foremost, and yes, we happen to deal with CP, but that is not who my kids are or what our family is about. Of course these tings are very real, but we can choose our words carefully.

Language is important. I think it's a vital tool in acceptance and inclusion, and the power of language cannot be underestimated.

Well, a lady on the group took exception to my political posts.

This mother has a young preschooler with complex medical needs, and spends a lot of time in hospital, trying to survive. This is increadably hard for her and her entire family (the other children have to miss their mother for long spells while she is in hospital with their sick sibling). That she's not too interested in the politics of language is obvious, she has more pressing matters to deal with.

Last Thursday I send the group a report by Access Economics on how much CP costs the nation (follow the links here to view the full media release from CP Australia ( PDF - 23 KB) or download the full report, The Economic Impact of Cerebral Palsy in Australia in 2007

The report is a good thing. It gives us better weapons to ask for better services, funding to disability programs (like PADP) and of course, better payment for Carers. I mean, compare $306 average weekly cost to the $90.45 fortnightly Carer’s Allowance. It's an interesting report and a vital lobbying tool for parents and carers We need this sort of information. We just have to be careful that it doesn’t get mis-used. Just because they are disabled doesn’t mean my kids are costly scroungers….

So I added a note to the group that "I’m not so happy with having our children analyzed only in terms of what they cost" and referred to a post by some of the group members on the Carers 2020 website where they argue that it's time to change our thinking. The money spent on disabled kids (therapies, equipment, etc) is not so much a "cost" but actually an "investment" in their future. Help them out now, and one day they may be bringing home silver medals in the Paralympics, run a business, be a father, or get a job and pay their taxes.

My comment on the "cost" language came after some other posts on language, and was one too many for her. It doesn't really matter what she said. I probably should have thought "she's havign a rough time" and let it pass, but when she claimed that the whole group was unsupportive and dragging her down, I got defensive. I felt that was unfair to the group, anyone, that includes her and me, is free to post about any issue that is relevant to their situation as parents of children with CP. So I replied, and one thing let to another, and ended in some messages that were not nice (and I am equally guilty as accused). Best not said too much about it. But one of the things she wrote to me in her anger did rather upset me.

She wrote

You know, really Heike, I just think that you just don't get it. Whilst you are so worried about every label and anything that you can twist around to take offence at, there are other people in this group who are just concentrating on meeting the needs of their children so that they survive another day or week or year.

At first I was a bit offended by the "reverse competition" of "my kid is worse than yours" in the commnent. I didn't think that was very useful in a support group, and it's not really the level I want to decsend to.

But then of course, she is right.

I am very lucky that none of our kids have any medical issues to deal with. I don't have a clue what she, and others like her, have to go through. If my kid was in hospital, or having regular seizures, or whatever, I probably couldn’t give a toss about language either.

Yet.

As far as I am concerned, they are all different sides of the same coin.

There are those of us struggling very hard to keep our kids alive and in this world. There are others who are just trying to stay functional in this world. And others - with less life-threatening issues at hand - who are trying to make that same world a bit of a better place for all our kids, and all those who are "different" from the norm. And we all go through periods where different things take priority.

Language matters, for all our kids. One day, these kids will no longer be quite so medically fragile and go to school. Or the shops. Or the playground. And come home in tears over something others have said.

Language matters to me.

Where is the line between “disabled kids cost that much” and “disabled kids cost too much”?

Thief

2008-08-01T19:52:00.007+10:00

We have a thief in the house.

Last Saturday, Daddy and Beaver had a sleep in the big bed and Possum, Boo Boo and I went to the park. After the park I bought the kids some ice-cream, and after they finished, I got a take-away one for Beaver, and a really nice biscuit for me. Which somehow ended up on the kitchen bench top while I was attending to other matters.

Until Possum screamed "Mam, she's got your bikkie"...

Now you see, this wheelchair we've got for Boo Boo has this nifty little control that lets her move the chair up higher. Like this.

This means she can access the table - very handy when visiting a cafe - or the sink - good for washing hands - or even the kitchen counter - not so handy when mum is cooking dinner and an exploring two year old comes driving along.

Or when there is a yummy biscuit on the kitchen bench top. You see, like this.

And so, the young lady spotted the bikkie, drove up to the counter, raised her chair, picked up the bikkie, lowered her chair (neatly obeying the "don't drive with the chair up" rule) and then drove herself off to a quiet corner to secretly munch on my special treat. Only to be thwarted by her equally eagle eyed brother!

Well, I took it off her, and she laughed. She knew darn well it was not hers to take. Cheeky bikkie thief!

Dunno.

I'm re-considering all this independence stuff....

Dancing Queen

2008-07-31T13:30:00.005+10:00

Thanks to the organisational skills of our friend and old neighbor Shannon and her two gorgeous girls, Boo Boo and I went to a small Hi5 concert in a nearby suburb.

Boo Boo loved it and has been bitten by Hi5 fever again.

She asked to watch a Hi5 DVD on TV yesterday evening and jived away in her walking frame.

See?

Make an on-line slideshow at www.OneTrueMedia.com

Sanskrit

2008-07-30T17:09:00.003+10:00

There was a time that the idea of Beaver reading and writing seemed like an impossible dream.

Now, he's doing both. Slowly. At times haltingly. But he's doing it.

One of the quirks - or perks - of the school we chose to sent the kids to is that they learn Sanskrit. As regular readers know, the kids pray in Sanskrit, and have an annual school Sanskrit competition. Beaver does well in this, he was one of the finalists this year.

And now, have a look at this

It's the letter "a" in the Sanskrit alphabet.

Pretty good eh?

Fluffy

2008-07-25T09:21:00.004+10:00

Susan, mother of Molly - you know us too well. You win. Now, what shall I give you as a prize?
Fluffy is a Burnese Boa (who had been fed before the photo session) and was remarkably soft (although not fluffy) to hold. If only you didn't have to feed snakes live mice, I'd consider getting one as a pet...

Ozzie Beauties

2008-07-22T19:38:00.010+10:00

Over the holidays we ganged up with some family members and visited a nearby animal park, where we saw these beauties.

One big fat crocodile, one red-bellied black snake (the same ones as live under our pool) and a very friendly wallaby (so used to kids around that it didn't mind some patting from Boo Boo).

They had some nice reptile shows - the kids loved it. Beaver quietly stood on the side looking at it all, Possum sat on the fence (literally) and watched intently, but touched not a single animal. Their two cousins sat on the fence too, touching whatever they could, and volunteering to help a number of times (although to their big disappointment, they did not get chosen). I held up Boo Boo, who was very interested and keen to touch all the reptiles. One of the baby crocs was a bit aggro and kept biting the ranger's shoes - and Boo Boo pointed at her shoes and said "me!"

At the very end, only one of the children was game enough to pose for a photo with Fluffy. Any guesses which child, and what type of animal Fluffy was?

Have Wheels, will Attract Comments

2008-07-21T20:53:00.006+10:00

We're taken Boo Boo out in her wheelchair a few times now, to the shops and to the park.

Mostly, people stare in wonderment at such a small child driving a mechanical device. I admit, she's tiny. And she's totally in control. it is awe-inspiring.

Quite a few people think she's cute, especially if she drives over to people's tables in a cafe to check out the food they have on their tables. She will smile one of her big grins at them , pointing and saying "yummy". A bit like a big eyed puppy dog that comes begging to your table.

Other kids are fascinated and find it hard to keep their fingers off the wheelchair. The joystick especially is very hard to resist for many kids. I don't mind too much if other kids touch it - Boo Boo is quite happy for them to have a feel. I think she enjoys being the centre of attention. If they fiddle with it too long, she sweeps their hands away and says loudly "bye bye". She' s perfectly capable of telling other kids when it's enough. Most of the parents, though, are mortified their kids touch the wheelchair. Probably fear it's contagious.

Mind you, if any adult dared touch her wheelchair controls like someone did with Moo over at Terrible Palsy, I will probably lynch them!

And of course, the stupid comments have started.

A favorite seems to be "what's wrong with her?". This one generally comes with some good old fashioned staring first before they pluck up the courage to come over and comment. My standard answer so far to this questions is "Nothing". This confuses people no end. Then they go "oh, but i mean, why does she need a wheelchair?" On my braver days, I simply answer "for the same reasons people need glasses". What is it with people, why do they feel the need to know our entire medical history. I'm not asking after their hemorrhoids, so why do they need to know a diagnosis?

Or how about this conversation:

- Hmm. Nice.
polite smile from me.
- How much does it cost?
- Seventeen thousand dollars.
- Whoa. That's expensive. Where did you buy it?
- Northcott Disability Services.
- Oh.
- Yes. It's not a toy
- Oh. Not a toy. Oh. It's very expensive.
- Yeah.

One of the best responses so far was from a pimply youth who works at a games shop in a nearby shopping centre. He watched Boo Boo flawlessly manoeuvre in a tight spot, her hand loosely on her joystick. Then he turned to me in awe and said "Man, she's going to be deadly with the games when she grows up". Yeah! I think she will.

Love

2008-07-15T19:44:00.004+10:00

Boo Boo was in bed, I finished scratching Beavers' back, and now it was time to go and say goodnight to Possum.

Possum told me that he loved me very much. He said he loved me every day, and would love me every day in the future, even after he dies, and even after I die. He promised me that when I die, he will think of me every day. Even after he dies, and I have died, he will think of me every day. And if he comes back in his next life as a mosquito, he will think of his people-mamma every day.

Then he gave me "infinity kisses and hugs", and said "see you in the morning". Such a sensitive little soul.

This morning I had asked him to repeat something I hadn't heard (with the builder drilling outside and Boo Boo endlessly beeping the horn on her wheelchair). He got really cranky with me and told me off for "ruining his day by getting him to repeat what he said".

Isn't he a little gem?

Baby Driver

2008-07-12T22:09:00.004+10:00

Make photo slide shows at www.OneTrueMedia.com

My first ever attempt at video editing. Oh well, we all have to start somewhere...

Bottlebrush

2008-07-12T18:43:00.002+10:00

Somewhere on a backyard terrace in Belgium, an Aussie bottlebrush is happily flowering.

Well done, Oma and Opa!

A Whole Lot of New Gear

2008-07-11T20:15:00.006+10:00

This week was another biggie. Lots of things that have been long in planning came to fruition.

The ramp is pretty much finished, as is some cladding we had done to the house. Our builders have done a great job, and the ramp has actually lifted the whole look of the house from dowdy to inviting. Proof that accessible doesn not have to look bad!

This week also saw the arrival of Boo Boo's wheelchair (her "car" as she calls it) and our new car - the very first brand new car we ever owned. When I drove it home I wondered what the little digital display number 21 in the corner was - until it dawned on me that it was the Odometer. I've never had a car with only 21 kilometers on it!

To Boo Boo's delight we can now easily put her "car" in our car - and there is still plenty of space for the ramp, her pram, a little chair for her, and mamma's shopping.

We've had our first outing to the local shopping centre with Boo Boo (and off course, collected our first stupid comments from total strangers) who loved showing off her driving skills to all the shopkeepers we know. The 5 minute walk to the shops took us about an hour as Boo Boo had to drive into every driveway, check out every fence, letterbox, car, tree and what have you along the way. She was enjoying her new found freedom. I wasn't so pleased though. I had not had my morning coffee yet, and getting to Daeyong's cafe at the shops took way too long for my liking! Still, I tried to hold my tongue, not wanting to spoil the event for her (too much - I admit I'm pretty cranky without my morning coffee fix).

And today we went out to buy a portable foldable ramp to take the wheelchair in and out of the car. We're all set now - and considerably poorer - with all the gear in place! Watch our Sydney, here comes the wild'n weird bunch...

Some Holiday Snaps

2008-07-09T10:28:00.009+10:00

Girls on the ferry to Manly

Boys on the ferry to Manly

Boo Boo loves the sand ...

... especially dropping it on Mamma's pants

Afternoon on Manly beach

Big Week - Thursday

2008-07-08T20:11:00.005+10:00

Just to finish off last week - on Thursday, we went to TSC to trial a Mulholland Walkabout walking frame for Boo Boo.

As you can see from her face, she absolutely loved it.

We were lucky enough to take it home for 6 weeks. While it's probably not the best walker for her at the moment, it's a great way to get her into the spirit of walking, and strenghten her legs a bit more. Ideally she'd try a Hart Walker next, but she needs to grow a bit more first...

Anyway, on Friday morning, she chose her walker over her wheelchair, so the OT's worry that all Boo Boo wants to do now is drive around is only partially true - she does want to drive around all the time, but she's equally keen to give walking a go. It is as if the mobility of the wheelchair has given her a motivation to want to get up and walk.

Charlie

2008-07-04T20:36:00.003+10:00

Let me quicky introduce you to our new family member: Charlie.

She is 5 years old, very tame (lived with a family before) and came to us on the spur of the moment (one of love at first sight).

Already, she is much loved. Beaver especially has appointed himself number one bird boy.

Big Week - Wednesday

2008-07-02T21:45:00.001+10:00

On Wednesday, we had our first meeting with our new neurological team.

When we first took Beaver to the Rehabilitation team at the Physical Disability Clinic at Westmead Children's Hospital, the Dr. Adam Scheinberg made it quite clear that he was not sure we were looking at a "classical" case of CP (if there is such a thing). But for all intends and purposes, Beaver was presenting like CP, and so he gave us that official diagnosis (after we specifically asked for it) in order to access services.

In late 2005 life was getting a bit easier. We realised Beaver was a bit unusual from his peers with CP, and we felt we had a bit more "brain space" left to pursue the cause of his disability. Off we went to a neurologist, who examined the boy, ordered and MRI and spinal lumbar puncture, and a whole raft of blood tests (metabolism, thyroids, etc,) and told us that, according to her, we were dealing with a genetic issue, and we were lucky that Possum was unaffected. Well, that wasn't quite what we wanted to hear – as we had just found out that despite me having my tubes tied, we were expecting Boo Boo. Talk about a bombshell. Anyway, to cut a long story very short, around the 4 month mark, we realised Boo Boo had indeed the same condition as her older brother. And this provided us with some answers.

The fact that we have a boy and a girl with the condition - and the fact that a thorough investigation of Beaver threw up no obvious syndromes or diseases – tells us we're dealing with an autosomal recessive hereditary condition. Put simply, this means that Hubby and I have a fault on exactly the same spot on the same gene. We all have numerous little genetic faults that don't particularly bother us. Hubby and I are carriers for this disability our kids have, but since we only inherited the fault from one of our parents, it doesn't bother us. When we make babies, however, we have a one in four change that both of us pass it on to our kids and they are affected by it, a one in four change that neither of us pass it on, and a two in four chance that one of us carries it on and our kids are carriers.

So that's as far as we got. Then our neurologist left town, passed us on to another one, and a really famous one too. He saw us, suggested an MRI scan as a benchmark for Boo Boo, and that was that. We agreed to a scan, but never heard anything, never got a follow up report.

As we all know, so often in life it's who you know rather than what you know. Turns out our friends Blair and Enrico are friends with a top genetic neurologist, and they were appalled that we hadn't progressed any further. So they gave us a phone number, followed up with a message to the neurologist that we were friends – and we got to bypass the 6 months plus waiting list.

So on Wednesday, we met with Professor Kathy North and Dr. Richard Webster. It was a big day for us. Beaver was very anxious about it all, he's really come to the age where he wants to be left alone and hates it when others discuss him in terms for his disability. I get that. But it's one of those things in life he will be confronted with again and again and again. Of course, the first day after his bullying event wasn't too good for his fragile self-esteem, but what can you do. I wasn't going to cancel on an important appointment that takes months to get.

We talked about it quite extensively with him beforehand – he was very keen to know what they were going to do with him, and why they wanted to see him "because there is nothing wrong with me". But despite all our preparation, we completely forgot that they would want to weigh and measure him and take his blood pressure. What a palaver that was! All he had to do was stand or sit on a big scale (they cater for kids with a physical disability there), stand against the wall and sit in a chair. He steadfastly refused all three and sat, slack as a rag, on Daddy's lap! And that was only the pre-appointment check by the nurse!

Thankfully he settled down a bit after that, and managed to get through the actual examination with Kathy and Richard quite well (I love the Australian casualness, it so helps to reassure the kids!)

And their verdict, you ask?

Well. It’s definitely autosomal recessive. It's physical. And it's probably a protein or glycoprotein that's either not make or made in insufficient levels.

They seemed to think that the problem lies in the white matter of the brain. As wikipedia explains:

"The white matter is the tissue through which messages pass between different areas of gray matter within the nervous system. Using a computer network as an analogy, the gray matter can be thought of as the actual computers themselves, whereas the white matter represents the network cables connecting the computers together. The white matter is white because of the fatty substance (myelin) that surrounds the nerve fibers (axons). This myelin is found in almost all long nerve fibers, and acts as an electrical insulation. This is important because it allows the messages to pass quickly from place to place.

The brain in general (and especially a child's brain) can adapt to white-matter damage by finding alternative routes that bypass the damaged white-matter areas, and can therefore maintain good connections between the various areas of gray matter."

In particular, they were putting their money on cytokines. Turning to wikipedia again

"Cytokines are a category of signaling proteins and glycoproteins that, like hormones and neurotransmitters, are used extensively in cellular communication."

This is fascinating information. It fits with our observations – Beaver has made progress in unexpected areas, which could be because his brain has found new pathways, He also responded remarkably well to glyconutrients (which produce glycoproteins ) so I wonder if there is a connection – and I've put him and Boo Boo back on them.

But is it useful? Well, no. Not yet.

Maybe one day, we can work our which gene holds the mistake, and which cytokines (or protein, if you like) is lacking. And then, we might be able to give that to the kids and reverse some of the damage. Maybe. One day.

For now, the team think we are very interesting case – isn't that nice to know. We do not need to get an MRI for Boo Boo, which is very nice (as it would need to be done under a general anaesthetics) since both kids have the same, and we have a baseline for Beaver. We might do another MRI, or a functional MRI and an MRS (a chemical analysis of the brain) when he is older and can do it without needing a general. They are looking for a research institute that specialises in autosomal recessive genetic disorders to further test us – apparently they are working on a linked DNA test (which should be available in the next five years or so) where all of us would give DNA and they would look for the differences, and then examine those more closely. This would spare us long (and expensive) individual DNA analysis in which we go for an endless fishing expedition because we don't know what we're looking for. Sounds logical to me.

And in the meantime, we continue with therapy – the doctors were very impressed with Boo Boo's ability with the power chair – and need to take Beaver back to Dr. Scheinberg at the Physical Disability Clinic to get his feet checked. His Achilles tendon is so tense that we're going to run into problems some time in the near future, and something (splinting, Botox, surgery) needs to be contemplated.

Oh dear.

Big Week - Tuesday

2008-07-02T19:01:00.001+10:00

Tuesday was the last day of school for this term. It comes quite a bit earlier for our kids than most others, it's one of those quirks of the school we have to put up with – thankfully, it's more than compensated for by all the other positive things.

The boys were ready for a break, they were both getting very tired. After all, at 7 and 5, they are still just little boys in my eyes (but please please don't tell them that) and they need time off to play and muck around and do nothing.

So both the boys were very much looking forward to their last day. Unfortunately, it didn't go too well for Beaver.

At about two thirty that afternoon, Beaver's class teacher rang me. There had been an incident at school, and she wanted to brief me on it before she packed up for the day, for the holidays, and to fly to South Africa the next day to visit her dying father.

During lunch time play, Beaver had been pushed down by one of his class mates and two younger kids from the kindy class (i.e. Possum's class). Then, every time Beaver tried to get up, they pushed him down again, and again. When Beaver started crying, they kept going. At one point, one of the children pushed Beaver's play hat into his face, pushing his head into the gravel. By then, the supervising teacher came running down, and pulled the whole lot apart.

The children all got a serious talking to there and then, and then another one by the deputy head (a lady they all respect highly). They were told this was a very serious incident, and the school was going to ring their parents to inform them of their behaviour. Then, the two classes involved got a serious bollocking, not only about the behaviour but also all the other children were chastised about not intervening earlier; stressing the point that not acting to help is just as bad. And then the teacher called me to let me know about it all.

About ten minutes later, I received the first phone call from the parents of the children. They were devastated and very apologetic. I told them it was ok. Some of them wanted to bring their kids over in the holidays to come and apologise again. I didn't think that was necessary – as far as I am concerned, the school dealt with it swiftly, and dealt with it appropriately.

Possum and Beaver do this at home quite often, where mainly Possum jumps on top of Beaver, and then they have a good old rumble. Possum learned when to stop after one day Beaver (with our explicit permission) jumped on top of Possum and showed him who is the older and stronger boy. So I'm not surprised this happened. I am fairly confident that the whole thing started out as a perfectly fun game that went to far. And this is what growing up is all about – kids need to learn where the boundaries lie. When someone is clearly weaker (i.e. not able to get up) or upset (crying) they need to stop. And pushing someone's head in the gravel is definitely mean.

But kids are kids. They do these things. And then they learn it's not OK.

Doing these things does not mean they are bad kids. Doing these things does not mean they have bad parents.

What happened is not OK. But it's normal. And it's a good learning experience. For the kids, and for Beaver.

This does not mean that I'm happy it happened. Or that I wasn't upset it happened. It does not mean that I did not quietly have a little cry in bed that night.

It saddens me that Beaver was pestered like this. It saddens me that he did not know how to respond to it. I think any parent would feel that way.

But it did make me realise that I need to teach Beaver some survival strategies. Because, let's face it, this sort of thing is going to happen again. He will always be an easy target. And this is just the physical side of things. On a daily basis, Beaver is aware that he's not one of the guys. There are minute little moments every day that he is excluded. It's part of Beaver's life, and it will always be. So as a parent, I need to teach him how to cope. We've got a martial arts place up the road, and I'm going to have a chat with the Sensei about maybe some one-on-one basic survival techniques.

And for those who are wondering – Possum was blissfully unaware of the whole thing, playing soccer with his mates at the other end of the playground. He told me that he was the one who went and got the teacher, but I think that's wishful thinking (after the talk from the teacher about the need to act) as two independent sources tell me he was nowhere near the incident.

And Beaver – how did he deal with it all?

I said nothing at first when he came home from school. I asked him how his day was, and he said "ok" and went off. Half an hour later he still had not said anything, so I called him aside and told him his teacher had called me about what happened that day at lunch play, and would he like to tell me what happened. To which he responded "oh, yeah, I got bullied today" and went off. He tried very hard to pretend nothing had happened, but I kept bringing it up, since I wanted him to know that the school took the incident very seriously, so that he felt safe and school. Then, over the next few hours the whole story came out. And then it became his favourite thing to tell people for a few days, And then, it settled down – he is currently obsessed with the plot and various sub-plots of the movie Curious George, and who does which voice. But it's still there. Yesterday, out of the blue, he told me he still the boy from his class who was involved is still his friend.

Hmmm. Just another day in the life of rollercoaster parting.

A New Friend

2008-06-30T21:07:00.003+10:00

It's late tonight, so just a short post for today. I know I have a whole busy week to catch up with, but with the boys on holidays, life is hectic at the moment. But don't worry, I will get there.

So, let me tell you how lucky I am to have made a new friend last week. When Boo Boo took her Koala for a drive to Oma and Opa's house last week we stayed for a play, and by the time we made our way back home, it was getting dark. The chair comes with some lights, so we figured we might as well turn them on. They were actually quite useful in highlighting the path in front of us. But is also made us very visible to a family living between us and Oma and Opa's house (which is literally just around the corner from our house) returning home. One of the kids noticed the wheelchair and came up, soon followed by his mum. We started chatting, and I mentioned I had an older child with the same condition. The mother wanted to know where I live, and she seemed delighted to discover how close we were.

"I'll come and see you some time soon" she said.

I was looking forward to that, but didn't expect her to turn up the next day. Soon I found out why.

You see, my new friend Susan has nine year old triplets. Yep, three for the price of one! And two of them deal with some ADHD and High Functioning Autism (or Aspergers).

A fellow 'special needs' mum literally around the corner!

And you know what? She's really nice too!

How lucky can I get!

Someone to chat to. Compare notes with. Someone who only needs half an explanation to understand some of the daily, tiny things that make life difficult. Wonderful!

Sure, our kids have different issues. But we struggle with the support services, with other people's prejudices, with the daily moments of exclusion our kids face.

We have since met Susan's kids, and Possum and Susan's boy enjoyed a play together . Boo Boo was delighted to have two older girls in the house, and Beaver just loves another adult to chat to.

The only pity is that she has two dogs. I am very allergic to all things furry and Possum is petrified about dogs. But we will go and pop round anyway. This is just too wonderful.

Big Week - Monday

2008-06-29T20:00:00.001+10:00

On Monday our trial period finished, and Scott from Northcott Equipment Solutions came to pick up the Koala. We had bitter tears, it was truly sad.

"Me" "More" "Car" "Car!" "CAR!" And then lots of crying.

Thankfully, we still had access to the Roller Rad we're borrowing from The Spastic Centre. But Boo Boo knows which chair is better.

That evening, we sat around the table with Oma Ineke and Opa Keith, in which we discussed all the prices and specifications of the various wheelchairs we trialled.

It must be said, we came to a fairly quick solution – the Koala is the clear winner all round. It's such a versatile chair, and the fact that it is clearly designed for young children shows in daily usage. It is a gorgeous little chair, very easy to drive and manoeuvrable, and cute to look at on top. It's lower than most other chairs, which means the child is closer to the level of other children, yet the chair can be moved up to reach a table.

This might not seem like much, but on the weekend we had some kids visiting, and Boo Boo was on their level, which is unusual for her. She also manages to drive the Koala into the pantry, pick up a plate or bowl, and place it on to the kitchen counter all by herself by lifting the chair up. Also, once we hit the shops and cafes, we won't have to transfer to a high chair anymore, or have her sit on my lap while I balance a wriggly child and eat food with one hand. We can simply move a chair out of the way, and raise Boo Boo's wheelchair up to the table.

So, that was an easy decision. Then to the money side of things.

We were working hard on the paperwork to put in an application with PADP, the NSW government programme that funds equipment for people with a disability. But in the end, we decided against it.

You see, the inside knowledge on PADP (coming from someone working for the Department in charge of PADP, the therapists at The Spastic Centre and other parents' experiences) is that they fund powerchairs only about 6 months before a child goes to school. That's right. 6 months before school, to give the kids 6 months to learn how to drive the chair before school. This means the child will be about 5 years old. Yeah, right. Whatever happened to the Early in Early Intervention?

I've been reading up on introducing powered mobility to young children, and basically the research suggests that children with a physical disability should be introduced to a power chair at about the same time other children learn to walk. Children of 20 months were found capable of handling electric wheelchairs if they were taught how to use them. So, with Boo Boo 2 years and 3 months and a bright little button, we felt she was perfectly ready. But our chances of actually getting a chair funded were very small. I thought about putting in an application anyway to make a point, but...

You see, it takes about 3 months or so for PADP to decide on an application. And in the unlikely event that our application would get approved, the average delivery time for a wheelchair is 18 months. So, we decided that wait was not worth it. Luckily we have some very generous family members helping us out (and here goes a big thank you to Opa Keith and Oma Ineke, Oma Helma and Opa Manfred, Tante Anita and Marianne!).

On Tuesday morning, I rang Scott and ordered a Koala for Boo Boo.

And didn't we get lucky!

As it happens the Koala is undergoing a makeover, and a new model is coming out soon. Which means the current demonstration models will not be of use much longer, and guess what, they are for sale! So, we are buying the very same chair we had in the house this week, slightly under the full price. Scott will give it a good service, fix a broken tail light, and add a bumper bar, and when it's ready, he will come and install an attendant control (which is a joystick device which overrides the normal operation and gives an adult control over the chair). Then he will come and deliver the chair early next week. Yes, early next week! Possibly as early as Tuesday. Can you believe that!