Monday, August 30, 2010

David and I have been busy looking for beach houses to buy and we found one that we loved down at a little place called Yanakie, which is at Wilsons Prom. So we decided to head down on Saturday and have a look at it!
Yanakie is a bit over 3 hours drive from us, but seeing as my sister lives in Meeniyan we decided to see her, and then visit my parents in Melbourne on the way back.
The kids had an absolute ball!!
It was so so nice to get away from freezing Ballarat.

The house was great, but it wasn't close enough to the beach, and David wasn't happy that he couldn't go fishing due to the fact that the inlet is a marine park (so protected), so we will keep looking.
But it was so worth the drive.
It has reminded us how much we do love going for day trips in the car and how much the boys love it.

Thursday, August 26, 2010

People First

I often wonder if people actually understand what this means.
Sometimes, I can almost hear the collective groan when I mention it, or, if I correct a person.
I can see the eyes roll, and people look at me with 'that' tone of voice in their eyes.
You know what I mean.

The thing is, I am serious when I correct people. I choose to educate and encourage people to stop looking at someone with a disability as though they are nothing but that disability.
Just because someone may look different, may not be able to talk, or may have a label whacked on them, doesn't mean that they are not PEOPLE FIRST.
Imagine if someone judged you purely on your hairdo (which, not surprisingly does actually happen, just ask our caretaker prime minister), instead of talking to you, they looked at you and decided you were just that girl with funny hair who probably can't talk.
Which leads me to assumptions.

Why do people assume the things they cannot know? For example, there seems to be many people around me that make up things in their minds, or assume things about me that just aren't true at all. Most of the time, it's water off a duck's back. You develop a very thick skin when you have child with a disability, which is probably because you get used to people judging you. But every now and then it makes me sad.

When I am talking about People First language, I am simply referring to calling people by their name. Ryley, for example, doesn't want to be referred to as 'That kid with WHS whose name is Ryley'. He wants to be known as Ryley. His disability doesn't define who he is. He is a person in his own right. He just happens to have WHS. Just like I happen to have brown hair.

One of the things I try and educate people on is using the phrase "child with a disability", not "disabled child". If you think about the two phrases and say them out loud, I am betting that both conjure up different images.
Now imagine a real life person who happens to have a disability. Imagine how they would feel being known by their disability. Despite what many people assume, those who have disabilities are not stupid. Some may not be able to talk, but they sure can understand tones of voices, gestures, and behaviours, and usually what is being said.

Changing people's attitudes is hard work. Unfortunately, as a society, we have ingrained in us a desire to outdo each other and try and make others feel bad because of our own insecurities. People who are on the 'margins' are easy targets. Until we have a government that respects people with disabilities, it is going to be an incredibly slow process.

Wednesday, August 25, 2010

I am still here in blogging world...just.
I know I said I wouldn't have too long of a break, but, well, clearly I am.

Think I might change the blog around a bit. Might inspire me to write again.

A quick update:
  • Ryley's ratio on his Keto diet has been increased to 2.5:1. This is a miniscule change, because he has always been on 2.25:1. But it has certainly made a difference to him. We are seeing less seizures again and more bubbly happy Ryley.
  • Braeden is testing every boundary known to humans. Funny, crazy, and frustrating all round. He did draw a picture of David the other night. I kid you not, he even gave him fingers on his hands. How amazing to watch neurotypical development unfold. I sit in awe of him.
  • Braeden and Ryley just keep on loving each other (with lots of wrestles and fighting thrown in). I don't ever get tired of watching them both zooming around the house on their little trikes. I can see that Braeden will be talking for Ryley in the very near future.
  • House renovations are so close to be finished (well not the bathroom-that isn't even started yet!). We are starting to the get the flooring all done now. Which means I can then move my house around and clean it properly for the first time in years!!
  • It is STILL cold as cold. It seems like it is never going to warm up ever again. Every now and then I get a smell of spring in the air. And then it rains.
  • Finally, I am getting motivated to start running and riding my bike again. Yay!

Tuesday, August 10, 2010

No School Monday

Ryley had a day off yesterday. Given that he also had Friday off to go to the RCH, he was pretty happy to head back to school today!

I haven't put any pictures up here for a while, so I thought I might put some up. Ryley is just developing so much at the moment. It seems he is having a real spurt. He is behaving himself and happy most of the time and it just so nice to see.
Braeden on the other hand...well...let's just say that is currently The Toddler versus The Stinking, Stupid, Mean Mum at the moment. Most days he can be found screaming blue murder because I have told him No. Or he will be screaming blue murder because he doesn't want my help, but he can't do whatever it is he is trying to do.
It is obviously very hard for him as he tries to be completely independent, yet still needs a bit of help. Plus he just can't regulate his emotions that well yet, so he spend a fair bit of time in a crying state.
But anyway.
We are all desperate for some warmer weather. It is just icy here at the moment. We are loving the rain though, it looks like our drought might finally be starting to break. This is our best rain in 13 years!!! So that is something to be very happy about!

Yes, they are riding their bikes in the house. No, I'm not worried given the fact that that is concrete and not our nice new tiles that are not yet laid..!
They are loving given each other cuddles lately.
Braeden hiding up on the couch and Ryley trying to catch him!

Thursday, August 5, 2010

When you drop your children off at daycare, kinder or school, you assume that the people caring for them will guide them through their day, teach them new things, care about their wellbeing. You place your trust in the teacher’s ability to ensure they are included, that their needs are being met.

This trust becomes vital when you have a non-verbal child with a disability. In many ways, you have to cast aside your own fears and allow someone else to meet your child’s needs.

So what happens when that child is being purposely excluded? When they are being treated as though they are a disease and made to spend most of their time in a passageway or outside in the cold and rain. The other children are encouraged to not include them in their games, or even go near them for that matter. No part of the curriculum is being adapted to meet their needs. In fact, it seems as though the child is actively being excluded.
No, this isn’t happening to us. Let me be very clear about that. Ryley has a wonderful time at school and I am confident his needs are being met and he is well cared for!

But somewhere, right now, that is exactly what is happening to a little boy.
Outrageous! I can hear you all think. Surely that kind of thing doesn’t happen to kids with disabilities. Especially ones that aren’t even school age. Surely in the current social and political climate that we live in, that kind of thing doesn’t actually happen.

Yes. Yes, it does.
Am I doing something about it? Bloody oath I am.
Will there be an investigation, a ministerial perhaps? Oh hell yes there will be.

Obviously, as a social worker and a mother of a child with a disability I have a fire in my belly like none other. But given that I work for a disability organization, it is being taken all the way.
I still can’t believe a child is so obviously being discriminated against. Who does that to children? Who does that to children with a disability even more so?


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