Thursday, April 28, 2011

Stay tuned

This year I will be blogging on May 1st about Disabilism.
For those who want to join in, go to the link here:

Blogging Against Disablism Day, May 1st 2011

Monday, April 25, 2011

Easter and the gift

Because I haven't posted many photos for a while, I am going to make this post fairly photo heavy. I have decided to re-neg somewhat on my no-photo-posting rule. If I start getting stupid messages and spam again, I will just delete them.
The kids had a great easter. Lot's of eggs for their egg hunt, but more importantly, they got books, PJ's and a dressing gown. Plus E. Bunny left behind some of his...erm...tail that gave them something to be excited about.
We then went out to David's parents house and took all the cousins fishing. Ryley especially enjoyed the long walk through the old diggers holes.
Me? Not so much due to the fact that I was carrying him!
Bloody good workout though!

I have also included some pictures of the kids new cubby house.
It has been nicknamed the 'Taj Mahal' because it is so big.
We got it given to us.
Yes that's right.
For free.
It is hard to explain how incredibly lucky we feel that someone out there thought of us.
It actually belonged to friends of our next door neighbours. We have only met them a couple of times, once we gave them a heap of plums.
David had to go around to their house and pull it all apart and remove it himself.
That was it.
They wouldn't accept anything at all.
So even though they probably won't read this.
Your kindness has made a world of difference to us.
In amongst the stress and caos that is filling our world lately, we have something that makes us smile.

Happy Birthday to Mum.

Easter Bunny Left instructions

Another chocolate!!

Ryley's hunting now

Here Mum, hold this while I pick all these up (note how it is still dark outside-it is only 6am)

The Taj Mahal

Kids loving it!

Thursday, April 21, 2011

Good Friday Appeal

I write a post every year about what the Good Friday Appeal means to us. And this year will be no different.
As regular followers of the blog know, we spend a lot of time down at the Children's.
It is very much a second home to us.
Ryley is a fairly well recognised child down there, which is not neccessarily a good thing!

The thing that I tend to always write about is how fantastic the medical practitioners are down there. The nursing staff are mostly exceptional. Without our team, Ryley wouldn't be where he is today.

I appreciate that it is impossible to donate to everything. But even $1 will help make a difference to fund more equipment and research so that the hospital can continue to save lives and improve the quality of life of those with complex medical issues and disabilities.

It is also a pretty good place to socialise (!!) Nearly everytime I am down there I am catching up with friends over coffee. The place is just comfortable. There is often so much pain, sickness and emotion inside those wards. But there is also hope, comfort and love.

So, please, dig deep and give if you can.

Tuesday, April 19, 2011

Update on previous post

Thank you to everyone who offered their support and comments about my previous post. It really helped me sit back and analyse the behaviour as opposed to just getting frustrated.
Here is what I came up with:
  • Ryley wants to wear underpants like Braeden
  • Ryley doesn't want to be changed on the floor
  • Ryley hasn't always finished his toileting when I am ready to dress him
  • Ryley knows that despite him being in a vulnerable position, he holds an incredible amount of power over me because he can kick me and move his body in such a way that I find it difficult to hold him. He likes to assert himself and have the control.
The solutions?
  • Change Ryley on the spare bed. He happily climbs up and lays down for me.
  • Once I remove his nappy, take him into the toilet and sit him down. He currently only sits for about 2 seconds, but it's a start.
  • I have looked in to using pull ups, but they are not practical at the moment due to the cost. I have an appointment coming up soon with the continence clinic and will enquire about cost effective solutions (ie. what are they going to do to help?!)
  • I did try changing him standing up in the toilets, but he had too many seizures and it was very difficult for him. So I will keep trying that occasionally as we progress a bit more with toilet training.

I did get kicked in the face again this morning, but I will persist with the changes. Ryley's behaviour in general is pretty bad at the moment, so I am hoping this phase will pass.

Thanks again for all the suggestions! I love how the blogosphere is so supportive!!

Friday, April 15, 2011

Next time

Next time you wonder why I need to exercise and keep fit, ask yourself if YOU could wrestle a 24kg kid 6 or 7 times a day just to change his dirty nappy.
If I don't keep fit, I can't do the basic things I need to do for my 9 year old child.

Have you ever tried to change a child who locks his body or kicks you with all his strength in your face or chest?
It is not easy.
It leaves me trying to catch my breath.

I can't yell at him.
He pretends he doesn't understand if I tell him to stop.

So tell me.
What is the solution?
I have tried distraction.
I have tried getting him to help me.
I have tried giving him something in his hands.
I have tried my timeout method.

For those who have an adult with a disability who is still in nappies/diapers and is able to kick you, how do you manage it?

Tuesday, April 12, 2011


He is such a sweet kid.
Tonight, whilst in the bath, David and I hid and listened to the conversation.
It went like this:
B: "I like it when you say Mum Mum Ma Ryley"
R: "Mum Mum Ma"
(giggles between both)
B: "I know what it means Ryley"
R: (smiles) "Mum Mum Ma"
B: "It means you love Mum"
(more giggles and both of them chorusing together Mum Mum Ma")

There were tears from me.

Thursday, April 7, 2011

Blog break

Another blogging break. Without warning.
My world is chaos at the moment. I desperately need a personal assistant. Or just someone to do everything for me. Because right now, I feel like I simply can.not coordinate another thing.
I have to when I am at work. Because. Well. I get paid to do that.
But in terms of everything else...

So, I am taking a little break from blogging. I have several blog posts that are almost finished so they will go up at some stage over the next week or so.
Unfortunately when life gets in the way, the blogging is the first thing I have to step away from.

Friday, April 1, 2011

Zucchini anyone?

After the week I have had, I think it is time to lighten up the blog with some funny, witty, fluffy posts.
I probably won't be able to deliver on the funny or witty. But the fluffy I will give a red hot go.

Our backyard is currently being overtaken by zucchini's. We have three different types: Dark Green, Green and light green (you didn't think I would actually know their real names did you?).

At first, the giant zucchini's were great. I would pick a small one to use with tea every night. Letting the two big ones grow until they were big enough for me to stuff.

But then, something happened.
There was rain, there was sun, there was neglect.
And then there was too many zucchini's to eat ourselves. We have given plenty away already. But there are still more!

Seeing as all the cool blogs have giveaways, I am having one too.
You don't even have to enter and hope desperately that you are going to win.
All you have to do is reply to this post and BAM! You got one.

In all seriousness. If you are reading this and want a mega zucchini, or even just a regular sized one. Let me know please. I will even deliver them too you (not if I have to catch a plane though-sorry).

PS. Did I mention that I also have tomatoes, pumpkins, broadbeans and butter beans?

This is my secret garden. So overgrown that it really is a secret.

There is actually a path through there somewhere.


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