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Research

28 Apr

Even though we are busy, I think it’s good for BC and I to be involved in research about matters relating to CP when asked to.

I feel a little unfair committing him to being involved in research activities that involve him putting in some effort, but so far, I’ve found that all those involved in studies have been lovely people and BC has found any tasks he’s been required to do really enjoyable.

I wouldn’t get involved in any research that was invasive or experimental, but those that are more about gathering data and information that will provide better understanding of CP issues are more than fine with me, as long as it’s fine with BC.

I think I mostly like us being involved in these kinds of studies because if there’s one thing that I have learnt since we’ve started our journey, it’s that there is a hell of a lot unknown about CP. The more research, the more that will be known for us and for others.

Since BC was a toddler we’ve been part of a 5 year study looking broadly at his gross motor development. We go in every 6-12 months and BC plays some games and they coax some movements from him in order to measure his abilities. He gets lots of attention and praise. He loves it. Each of the sessions is recorded on video. They’ve suggested that after our last session (later this year)  we might be able to get a copy of the video footage from all the sessions. I hope we can. I’d love to be able to watch how he has progressed over that time. I bet BC would love to watch it too.

Recently, we spent a morning taking part in a study designed to look at the ways cognitive ability is tested in children with CP. There was lots of looking at pictures and choosing involved. Some of it was a bit tricky, but BC really enjoyed that too.

I wanted to be involved in this study, looking at possible genetic causes of CP. However, BC is not the right age, and I later realised that because my husband is not from a Caucasian background, we are ineligible anyway. If you’re interested in playing a little role in research, I think they are still looking for help with this study, from Aussie families with and without CP.  (Note the very brief youtube cameo from Jimmy Barnes on the website ;-).

Today, I came across this research study from Europe about participation in ‘life situations’ (weird phrasing) of 8-12 year olds with cerebral palsy.  It makes for quite interesting reading.

I was saddened to read about the number of children who regularly experience pain. And also saddened by how many have low participation in a range of activities.

It sounds like Denmark is on the right track.

I wonder how Australia would compare.

I  like how the research paper draws on the UN Convention on the Rights of Persons with Disabilities in its introduction:

“Articles 23-30 of the 2006 UN Convention on the Rights of Persons with Disabilities, so far ratified by 34 nations, state that children with disabilities should be able to participate on an equal basis with others in family life, health maintenance, education, public life, and recreational, leisure, and sporting activities”

Now that’s a paragraph I think everyone, especially politicians and policy makers, should research and study very carefully.

Obama. Disappointed.

20 Mar

Unusual for me to write two posts in quick successions, but I’ve just been catching up on the news and I read this about Obama’s very recent appearance on Jay Leno.

He was talking about his poor performance at a bowling event (he bowled a low score of 129) and he said:

“It was like the Special Olympics or something”.

Booooooooooooooooooo!!!!!!!

I would have expected this sort of gaffe from his predecessor, but not Obama. He is erudite, intelligent and well educated. All the things GWB was not.

I know that he’s said he is sorry. I know that he rang the Chairman of the Special Olympics before the program had aired to apologise.

It’s great that he wanted to control the damage, that he realised (or was told) pretty quickly that he shouldn’t have said it BUT I can’t help but wish that he had known better than to make the comment in the first place. It just shouldn’t have been a comparison that came into his head.

As the Special Olympics chairman himself is quoted as saying:

I think it’s important to see that words hurt and words do matter

As I raised in a post a while ago, I totally agree.

Obama can still make amends though.

As disappointed as I was to read about his comments, I have been pretty happy reading the press that has followed.

It’s great that he’s invited Special Olympics competitors to visit the White House.

It’s even greater that a Special Olypics champion bowler has challenged Obama to a game.

I hope it happens. I hope it gets good media coverage. And I hope when the other guy, Kolan McConiughey, wins, it might give more people some food for thought before they make off-hand disparaging comments.

Maybe then I will forgive you Mr President ;-).

********* WAIT!!! There’s more*********

A late edit!!

I never usually add anything extra to a blog post once it’s out there, but THIS WONDERFUL LETTER written on a blog by a recent high school graduate called Sarah in response to Obama’s comment that I found via a recent post by Ellen over at To the Max (thanks Ellen!) really, really needs to be shared with as many people as possible. As I wrote in a comment on Sarah’s blog, her letter should have a place in the New York times. Everyone should read it. It’s a perfect response!!! Great work Sarah ;-).

Adventures of the (wishing) chair.

13 Mar

adventures-of-the-wishing-chairDoes anyone remember the ‘Adventures of the Wishing Chair’ books? In case you had an Enid Blyton deprived childhood, they are a series of books about a couple of kids, a pixie called Chinky and a flying chair. They were amongst my favourite books. I’ve been looking for them lately because I want to read them to my boys (and see if they still rate as highly for me now as they did when I was a kid!).

If only a flying chair were one of our options now. THAT would be fun.

Back to earth now, thanks to everyone for their comments about my last post about getting a chair for BC. Special thanks to Heike, Jacqui and Rich for their great thought provoking comments about different chair options for BC.

For anyone who didn’t read their comments on my last post, they all wondered why I wasn’t looking at a chair that BC could push himself rather than a stroller type chair.

Which got my thinking the same thing. Why not? I really love that blogging can give me such immediate and thought provoking feedback ;-).

I’ve thought long and hard about the chair again, taking into account when in reality BC will probably use a chair and I have decided that FOR NOW we will stick with our original plan for the Convaid stroller.

Why you may ask? Why don’t I want to get a chair like this that he can push? Why don’t I want to give him that freedom and that upper body workout?

quickie-kidz

The Quickie Kidz Chair

OR a chair like this that I can send him into battle with (love this chair Rich, thanks for sharing!):

tank-chair

Tank Chair

Well, mostly because as I said in my last post, the main reason we will use the chair is for when he is too tired to walk. I know my boy. If he is too tired to walk then he will be too tired to push.

I am also not convinced that he has the upper body strength and coordination to push a chair. I will definitely be revisiting that later though. It wouldn’t be the first time that I had underestimated my boy if I’d got that wrong ;-).

Another reason, purely practical, is that we have a 4 door hatchback car. There is a) no way we can afford a new car right now and b) no way one of these chairs would fit in our car (along with the walker, stroller for little Bean etc etc).

But really, if I thought that the Quickie chair would be the very best for BC, I would overcome the problem with the car. Somehow.

BUT with BC consistently making such great gains with his walker and choosing to walk more and more, I think at the moment, he really needs a chair for when he needs a break.

So, as I’ve said. Thanks again so much for the suggestions and sage words of advice. I really do appreciate the brain food!

I am sure this won’t be the end of our chair adventures, but for now, we’re back to the Purple Pusher ;-).

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/

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