Archive | April, 2009

I’ll do it myself, toilet training takes another step…

30 Apr

Last night BC decided he would take himself to the toilet. As usual, I told him I would come and help, but I was told “No, I’ll do it myself”.

Regardless, I tried to follow to help him, but I was once again told to “go away”. So I did (well at least I hid behind the door and tried to sneak some peeks at how he was going).

He was able to get himself upright at the toilet and, with much effort to pull his pants and undies down while he was standing up, something I’ve never seen him do before.

The story doesn’t end as well as it started. Once his pants were down, he was kind of stuck about how to get himself actually on to the toilet and time was running out..

And let’s just say that although it started so well, it ended with me, a bottle of disinfectant and a mop. Luckily it was just number 1.

Still though, I’m not complaining. I was very impressed. And he took the accident in his stride and didn’t get upset.

So now I realise it’s now time for us to update our toileting ‘system’.

We currently have one of these step/seats for him to use on the toilet.

bambino-toilet-training-step

He can sit on it very steadily and holding the rails can stand up, but getting on and off is just too tricky because it’s narrow and not very stable.

We now need to look at getting a new set up that will make it easier for him to access the toilet on his own.

I’m guessing that we’ll probably need to get something made (or make it ourselves) to fit our particular needs.

Fortunately, BC’s early intervention centre is brilliant and they do home visits. Fortunately too, we are almost due for a home visit so the OT and I can soon plan a new set up that will hopefully lead BC towards even more independent toileting.

Yippee!

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.

Mary and Max

26 Apr

mary-and-max-11

I went to the cinema today. This is not something that happens very often.

I wish it happened more. I LOVE going to the cinema.

It’s my own fault it doesn’t happen more often. I forget to arrange time out for myself to see a film when there’s something out I really want to see.

And then when I impulsively plan to go see a film, there’s nothing I want to see, or not at the time I want to see it.

But I had a free ticket to see a film (thanks Carers Victoria!) so I invited a friend along and we went to see the wonderful claymated feature film ‘Mary and Max’.

This film touched my heart. It was very beautiful.

mary-and-max-3

It’s the story of a very unlikely friendship between a lonely young Australian girl living in the Melbourne suburbs and an obese middle aged American living in New York who has Aspergers Syndrome.

It is funny, poignant, tragic and incredibly heartwarming. It’s also beautifully constructed. It’s awe-inspiring to consider the hours (and love!) that must have gone into its creation.

I’d be interested to know what anyone who has Aspergers thinks of the film. I don’t know much about Aspergers, but I thought the subject was dealt with with compassion and considerable thought. It was an important part of the film, but more importantly an integral part of the character who at one point (and this isn’t spoiling the plot in any way) expresses his dislike of Aspergers being considered a ‘disability’ OR something that might be cured in the future. He says “I do not feel disabled…I like being an Aspie.”

I am guessing that Max would also have disliked the Sundance Film Festival summary of the film which says he ‘suffers from’ Aspergers Syndrome.  Instead, for him, it’s just part of who he is, and without it he wouldn’t be himself.

It’s a great film. If you get the chance to see it, I’d highly recommend it. Take a friend. And a tissue or two.

mary-and-max-2

A star!

25 Apr

Remember how we attended the ‘Longest Cake’ event in Melbourne?

Well, BC scored his picture in the Newsletter about the event. He is at the bottom of the first page.

What’s The Buzz April Newsletter

It’s an interesting read, but the whole document is a big download. Sorry!

They raised an amazing $53,000 for the event! Not a bad effort!

I tried to cut and paste the pic on it’s own, but alas, I lack the technical skills. Maybe someone knows how I could do it?? ***Edited to add: Thanks to Ellen ( from To The Max) for adjusting the pic so I could insert it into to this post. I really appreciate you taking the time to do that for me Ellen!)***

So thanks to Ellen, here’s the pic on its own if you just want a quick peek:

bc-at-longest-cake

Stem Cells Again…

25 Apr

Another family from Australia are in the media to talk about going abroad for stem cell therapy, this time to China. (I mentioned this family in an earlier post)

I’m not sure it’s a path we’re interested in going down (too expensive for us for a start!) but, it’s definitely interesting so I thought I would share.

Improvements stem from cell therapy (boo for the bad pun!)

Comic Relief

24 Apr

We’re a little under the weather in our house this week.

Nothing serious, just a tummy bug that we are sharing around with each other.

But, it means we’ve had to put off a start to kinder for the term and there have been LOTS of requests for ‘cubbles’ on the couch. (We’re still working on that middle ‘d’ sound). And, there’s been a lot of self entertaining.

We’ve read a LOT of books and watched a LOT of Wiggles and Bananas in Pyjamas, but when the kids have been asleep, I’ve been watching some tv myself. Mostly online as it seems there’s never anything I want to watch on TV at the time I have to watch it.

I’ve been really enjoying this program from the ABC – warning, that it does contain some strong language – but it has such a beautiful heart. Very entertaining.

Choose your Own Adventure – Lawrence Leung

And while I am talking about watching funny things online,  here’s something to make you laugh -comedian Steady Eddy on youtube.

I’ve also been reading articles by my favourite funny columnist at the Age newspaper, Catherine Deveny. She’s very irreverent but always makes me smile because her take on life is so funny but true.

I hope we’re all better by the start of next week. I have another week of work lined up and I am looking forward to it as I am rather sick of being housebound and could do with a week of heading off to the city with the other grownups!

The Beach

23 Apr

Last week, we went to the beach for a few days to visit a friend.

I love getting out of the city and seeing different places. I also love spending time with good friends.

It wasn’t quite beach swimming weather, but it was perfect weather for playing in rock pools, looking for crabs and of course, stomping in the shallows.

It’s great having a brother to splash around with.img_3941

“It must be so hard”

19 Apr

Phew, exhausted.

We’ve had a busy weekend of kiddy birthday parties.

It’s very special to me that BC is getting invited to birthday parties. I cried when he got his first party invite last year. I don’t know why it matters, but it does. It’s not that I think he needs to be wildly popular, but I hate the thought of him being excluded from events because parents might think it could be a challenge to have him there or because his peers didn’t want him around.

So I was happy that he received a couple of birthday invites.

And BC was thrilled.

Yesterday afternoon’s party was a lot of fun. BC had a ball.

But.

It was at McDonalds. Not so much a problem in itself (although I am not a McDonalds fan, that’s for sure).

The problem started with the indoor play area which was pretty much impossible for BC to navigate on his own, but which, of course, was where all the other kids were playing.

So, while the other mums were sipping lattes and chatting,  I was clambering through the play equipment with all the kids.

BC had a blast, and I didn’t really mind being up there. It was kind of fun.

The problem was when I got back down and the kids were all eating their food. I joked to one of the mums that I always spend most of a kid’s party half way up the play equipment.

Joked. My point was, it’s funny.

Her reply, shaking her head, unsmiling “It must be so hard”.

The other two mums standing next to her nodded along grimly.

Sigh.

And no, I didn’t reply.

They’d so missed the point.

It’s not hard for me scrambling up play equipment instead of sitting and chatting with the other parents. Well, at least it’s not hard for me anymore. I’m used to that. And I like playing with BC. He’s fun.

What is hard for me is comments like that.

I don’t want anyone to feel sorry for me! I don’t want them to feel sorry for BC or think he’s a burden in any way.

I want them to joke with me about being the biggest kid on the play equipment or to laugh and say they wish they had an excuse to get up there and play.

I guess I just want what is normal for me to be normal for them.

And just to show how hard it isn’t, today’s party was at a hardcore indoor play centre where the play area looks like this:

rare-bears

It’s not the best photo, but I forgot to take my camera. This is from their website. There are about 4 levels of crawling, climbing and clambering to explore. And after me going through the levels all the way to the top with BC three times, he did it TOTALLY on his own twice – pulling himself up high steps, climbing through tunnels, clambering over partitions that were nearly as tall as him, and finally, going down a steep slide.

Sure, it took him a long time but the other kids from the party waved and smiled and chatted with him as they whizzed past.  He had a ball. And I had a ball watching him.

And it wasn’t hard. It so, so, so wasn’t hard.

It was exciting and amazing and fun and I couldn’t believe he had the confidence, the strength, the balance and the persistence to do it on his own.

So happy birthday to BC’s little friends and thanks for the great weekend BC. You can be my play date any day ;-).

New Shoes!

18 Apr

BC’s new shoes have arrived!

I can’t believe how fast the cogs of funding moved on this one.

I was so sure the process of application, approval, funding availability and delivery would take so long, that I chose these sandals instead of a pair of winter boots:

nextstepsandals-blueleather

Never mind. They look cute enough with socks on, and these days, our winters are so short that it will be well worth him having the sandals through summer.

Also, because they have velcro rather than buckles or laces, he can take them off himself (and hopefully will later be able to put him on himself too).

The whole process took 3 weeks. WOW! The way it should be, really.

The boots provide excellent heel and ankle support and help with keeping his feet in a good position for walking.

After looking everywhere for a supplier of these European made shoes, I discovered the main supplier in my city is within walking distance from our house! This meant going in for a fitting and collection was barely a chore at all.

The saleswoman said he’ll probably get 12 months wear out of them. After which time, we SHOULD be able to apply for further funding for another pair.

Just two days after getting them, I can see him walking better in his kaye walker.

Yippee!

Football

15 Apr

Football Season has started here. Torn hamstrings and two-week suspensions have taken over the news bulletins. Sigh.

Time to confess that I have never much been a football fan – not of the round ball, and despite living in a football mad city, not even Aussie Rules. I just don’t like watching blokes bowl each other over and I really don’t like the blokesy nature of football clubs. My LEAST favourite program on TV is ‘The Footy Show’. Puke.

I have also not much been a fan of footballers. I have long had the general feeling that they are overpaid,  arrogant and not particularly good role models.

However, in recent times, I’ve seen a different side. There have been AFL footballers at the Longest Cake event both years we’ve attended. This year we met a player from my aunt’s favourite team so we could get his autograph for her. He was polite and friendly and had a good little chat with BC.

And following the recent bushfires here and then at the annual ‘Good Friday Appeal’ to raise money for our city children’s hospital, there were lots of moving shots of kids meeting their football heroes. Kind of got me thinking. Maybe I’ve been a little unfair.

And then, just today, I came across this lovely video featuring English footballer Phil Neville talking about his daughter who has cerebral palsy.  I found it really moving.

In light of all this evidence to the contrary of my long held opinions, AND as a mother of boys and wife to a soccer mad husband, I have finally decided I better get used to football being around so I have even picked a team in the AFL to support this year (go the Bulldogs!).

I chose the team for 2 reasons. Firstly because the team nearly went under about ten years ago and was saved by the working class community around it who fought tooth and nail to keep their club alive. I like that the team has such spirit behind it.

And then because I read this article about one of their player’s last year who is step-father to a little girl with CP.  He seems like a good bloke. Yes. Another one. And yes, I am starting to realise I’ve been very unfair to the Footballer, falling into the trap of accepting a stereotype. Not any more. I’m giving the game and the footballers another go.

BC has decided to join me. We don’t really understand the rules, but we watched the game together on TV on the weekend. We learnt a few of the players names and BC decided he liked the colourful player number 21.  I googled him and his name is Jason Akermanis. And he’s fluent in Auslan so he can communicate with his deaf inlaws. Yep. Stereotype is out the window now. For sure.

I still had to wince at the roughness of the game but I actually enjoyed it and I think BC did too. Especially because they won ;-).

You never know, we might even go along and watch a game later in the season. Although that will probably have to wait until next year. I think  I have to take this just one step at a time…

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