Archive | November, 2008

A big train…

24 Nov

Both Bean AND BC love trains. In fact, the sign for ‘train’ was the first one BC learnt after ‘finished’ and ‘more’. They both get to travel on city trains very often because their dad gets free public transport as part of his job. SO whenever they so much as go past a bus, tram or especially a train, they usually get a ride. Also, if I happen to be working, dad seems to find it a lot easier to take the boys off on train rides than staying at home (yes, this does mean not a scrap of housework gets done, but at least no more mess is made either!).

Despite the frequent train trips, there’s still no change in the excitement in BC’s face every time a train arrives at a platform and a journey is about to begin.

And there’s only one thing that’s a more exciting adventure for BC than going on a train – and that’s going on a ‘different’ train. A good friend of ours gave BC a brilliant DVD for Christmas a few years back called ‘Here Comes a Train‘ which features all different kinds of trains. The DVD was such a hit that last time we headed to Sumatra, we changed our travel plans so we could have a day long stop over in KL, JUST so BC could travel on a monorail. We went back and forth the single route about 5 times with him calling out ‘STOP’ and ‘GO’ (with an enthusiasm that did not wane at all) at every station. I am pretty sure the driver thought we were quite mad (or very lost).

BC confidently tells me he wants to ‘fix trains’ for a living when he grows up AND the favourite toy of the moment is a wooden train set that BC got for his birthday WHICH I must add proudly, he’s become incredibly adept at putting together all on his own.

So with all this in mind, tomorrow is a very special day for BC because we are going on a ‘big train’ – meaning an intercity/country train – for a few days holiday. According to BC, the most exciting thing about a ‘big train’ is that it has a toilet on board. So this means several trips to and from the toilet for ‘maybe’ toilet needs each journey.

This trip will actually be the longest train journey that BC and Bean have ever had – about 3 hours. I am really looking forward to our little trip away but also REALLY, REALLY hoping that the novelty of being on a train doesn’t wear off for them both after the first hour. If so, it’s going to be a REALLY long journey!!

I hope everyone has a good week and I’ll be back to tell tales from our trip (and share a few photos) at the end of our journey!

(Oh and Ellen, I still haven’t forgotten my books post – I will finish it off when we get back xo).

Toot! Toot!

Seven steps!

18 Nov

That’s how many steps BC took on his own in the living room this morning! We’ve been working very hard at a ‘one step and stop’ technique to allow him to regain his balance after each step instead of propelling forward into what would be better described as ‘falling with style’ than walking.

His steps this morning were very wonky, but every time he got very close to losing his balance, he was able to regain it and continue. I think he could have gone further, but got the giggles because I was so excited ;-). He’s a long way from independent walking, but every step is still like a mini miracle to me – yay to you BC!!

BC has a girlfriend!

15 Nov

On Friday when I went to pick BC up from childcare the staff told me effusively what a great day he’d had.

They described him as a ‘chatterbox’. I can’t tell you how thrilled that makes me! He’s been doing lots of talking at home, but he’s not been very brave about speaking outside of the house. So it’s great that he’s feeling confident enough with his voice that he’s speaking more and more.

And it’s lucky that he’s got more to say, because this week he got his first Voice Output Device – a ‘Minimo‘ which is like a little computer that he can tap messages into (using picture prompts) and that then speaks for him. Unfortunately, our Minimo has a few bugs – it keeps freezing and slowing down – but the potential for it is awesome, because even though BC is speaking much more, he’s still got a LONG way to go with his speech control and it’s often hard to figure out exactly what he’s trying to say. The Minimo will be a great complement to help him get his meaning across. AND if anyone worries that a device like this might take away the initiative to speak and leave it to the machine, then don’t. Come around to our house and watch as BC constantly speaks alongside the Minimo ‘voice’. It’s made him want to talk even more.

The other news the staff had for me was that BC had spent the whole day playing with one of ‘older’ girls there (heading off to school next year), Miss K. I have met Miss K before. She’s a lovely, happy girl who usually rushes to get BC’s walker if I arrive to pick him up and it’s not nearby. Apparently on Friday, she and BC had spent most of the day playing together – dressing dolls and ‘cooking’ in Home Corner, playing in the Sandpit and doing puzzles together. I could tell they’d had a great day, because of the huge smile on Miss K and BC’s faces.

I have been ‘warned’ by other mothers and carers that it’s common for a confident girl to take a child with special needs under her wing and mother them a little. AND I will be wary of it happening at school if it means that he’s not being assertive and gaining confidence to do things on his own.

But for now, I am just very happy that BC has a playmate and is having so much fun. And if she’s part of the reason he’s feeling so much more confident to speak, then she definitely sounds like the perfect first girlfriend to me! ;-)

kite flying (and a belated happy birthday BC)

9 Nov

It was BC’s birthday over a month ago now. I have been wanting to write something about his birthday since then, but every time I try, I can’t. It’s just too hard.

I want to celebrate that day for what it was – the birth day of my beautiful first born son. However, at the same time I don’t want to go back to that time and place. That night when I should have been holding a squealing bundle of healthy baby but instead I was watching others trying frantically to bring life back into his body at the other end of the room. I couldn’t even see him. And then, seeing him drugged, hidden behind tubes and wires in a monstrous humidicrib being prepared to be taken to another hospital, miles away from me where they would do their best to save his life.

satria-day-2-of-life

It still makes me cry to see this photo. But it also fills me with a kind of awe that he’s come so far since then. And in the four years since he was born, there hasn’t been one day where I’ve felt the same kind of fear and dread as I did that day. I knew from the moment I held his hand the next day that he was going to survive AND that he was going to thrive. And he has.

For his fourth birthday, he received a kite from his Pop. Fortunately for him, his dad turns out to be a real super whizz kite flyer. So we spent his fourth birthday kite flying in the park. Here’s a video and from me, a very very (belated) Happy Birthday wish to my beautiful boy. Love you always xo

Measuring a person’s worth?

6 Nov

This is slightly off topic, and I don’t usually get political, but given my recent involvement with the Immigration Department, I couldn’t NOT share this.

There has been a recent controversy in my home state about a doctor who is being refused Permanent Residency because his son has Down Syndrome. This doctor has been living and working in a rural area, where doctor shortages are rife, for the last few years and is muchly loved and respected in the community.

I am saddened and disappointed to learn that the reason for the visa denial is because of the estimated health care costs that will be incurred by his son.

Much of the media is focusing on the fact that the doctor’s worth should outweigh any costs to society, but for me, it’s goes far, far beyond that. For anyone to be denied the right to live anywhere because of a disability really saddens and disappoints me. Surely, as a nation, we should have moved beyond such discrimination?

Lukas Moeller is a loved member of a family that wants to live in this country and has valid, legitimate reasons to stay here. For me, that’s the end of the story. The disability should be irrelevant.

A review of this particular case is imminent, and I am hoping that given the media attention (and the supportive comments of several standing politicians), it will be successful, but I think there should be a change to laws to take away discrimination of people with disabilities and their rights to immigrate to Australia.

If you are interested in signing a petition about this topic, one can be found below:

http://www.downsyndromevictoria.org.au/

Conversation with a 7 year old…

2 Nov

We went to a park yesterday that we don’t go to very often. We’ve actually only ever been there during the week, so I had no idea it was so busy on the weekends. There were kids everywhere.

As BC walked from the car in his walker, several kids stopped what they were doing to watch him.

One boy approached me and we had the following conversation:

“Why does that baby need a wheelchair?”

“He’s not a baby. He’s 4″

“Oh. I am 7. But why does he need that wheelchair?”

“It’s not a wheelchair. It’s a walker. It helps him walk.”

“Why? Can’t he walk?”

“Well, he can walk with his walker. He just walked here from the car. But he can’t walk without it yet. This is helping him until he can walk by himself.”

“Oh.”

The boy’s sister arrived at that point.

“What’s that?” she asked, pointing at the walker.

Her brother responded wisely:

“It’s a wheelchair for the baby because he can’t walk.”

Sigh.

Thanks for the award, but it’s not a competition…;-)

2 Nov

This week, BC was  given a little award from the Lion’s Club. It’s called a ‘Children of Courage’ award and was comprised of a little plaque with his name on it and a teddy bear.

He was thrilled to be getting the award and he did great on the evening, walking up the front of the room in his kaye walker and accepting the award, in front of a BIG group of people. I was very proud of him for being so brave and confident! It was a lovely compliment that he was chosen to get the award, and I appreciated the flowers that were given to me too. It was a lovely night.

The only downside of the evening for me was later as we were chatting with folk before we left. One of the Lion’s ladies commented that BC was doing very well, which was, of course, very nice to hear.  But she then added (unfortunately) ‘He’s doing much better than the other one, isn’t he?’ (the ‘other one’ being the gorgeous girl who was also given an award on the evening and, who I’d like to add is doing AMAZINGLY).

The other one? Really?

I started to say that there were different kinds of CP and that the two of them weren’t even really comparable, but she wasn’t really listening…What I really, really wanted to say was that it’s NOT a competition. It’s so, so, so not a competition.

I know she probably thought she was giving me a compliment, and it’s not the first time that BC has been compared favourably against another child that someone knows who has CP. A close family member once thought (I think) that she was complimenting BC when she said of another child ‘Well, that one can walk, but he doesn’t look right in the head to me’.

SIGH.

I say again, it’s really not a competition. We love the compliments, but we don’t want the comparisons, especially when by their very nature they are making such a negative, cursory assessment of another child.

Back to the Award, we have put the plaque on the wall and BC shows it to everyone that enters the house. So, thank-you Lions Club!

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