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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.

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!)

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…

Talking lesson.

23 Mar

It’s been AGES since we’ve had a speech therapy session.

BC’s early intervention centre does a lot of individual assessments in the first term of the year, so it takes a while for actual therapy sessions to get started.

I’ll be honest and say a big part of me doesn’t mind the break. It’s exhausting fitting everything into our week. We spend a lot of time in the car.

Also, these days, I feel a lot more confident about helping  BC developing effective communication skills because let’s face it, I know a lot more about this sort of thing than I did 4 years ago ;-).

Having a background in teaching English as a Second Language has helped a little too.

I know what a phoneme is. I know what a plosive is.

But, now that we’ve had a break from therapy and BC’s speech has made such gains, it was great to get some feedback on where we are at the moment and also build on  some new strategies.

BC’s speech therapist was VERY impressed with his willingness and ability to attempt making long sentences. It has reminded me that this time last year, we were really happy if he’d just say single words.

A year ago, if he wanted something to eat, he would use the makaton sign and maybe say ‘eat’. These days, he says ‘I’ve got a rumble in my tummy’ (thank-you Bananas in Pyjamas!).

A year ago, he never asked questions. Now, he asks them all day long – ‘Where are we going tomorrow?’, ‘Where are we going after that?’, ‘Who’s looking after me today?’, ‘What are we having for dinner?’.

His articulation is still not great. I understand most of what he says, but others often get it wrong.

He has a PODD communication book. Man, are these ever great. Now that BC is a little older, he LOVES his book. He brings it to people, he navigates his way around it and he gets frustrated when he’s unable to use it to find what he wants to say.

BC’s speech therapist was very impressed with his progress. She was able to point out some things that I don’t know much about -like the fact that he has much better control of his jaw movements. That his tongue is moving more independently. Cool.  We’re going to do some work on his open mouth ‘oo’ sounds and his ‘b’, ‘p’, ‘f’, ‘d’ sounds which he’s still having a lot of trouble controlling. Saliva control remains a priority too.

I’m also going to do some training in the ‘PROMPT’ system that his therapist uses. I LOVE this system. I can’t wait to learn more.

In the car on the way home, BC asked ‘Mum, when are we having a talking lesson again? I love talking lessons’.

Me too BC, me too.

This woman walked into a pram….

19 Mar

So, this woman walked into a pram…….

Sounds like the start of a bad joke, but was actually what happened to us at the pool this afternoon – I had my first ever experience of ‘pram rage’.

I was standing with Bean in the pram, waiting for BC, in his walker, to catch up with us in the foyer of the swimming pool, when a woman who was walking past, not watching where she was going, stumbled over the pram.

She looked at me.

I looked at her and smiled.

She looked at me again. She shook her head.

Then she said “Well, don’t you think you should say something?”

I considered ”Um….nice towel?’ but got the feeling that wasn’t what she wanted to hear.

“You just ran into me with your pram!” she shouted (loudly enough for people to stop and stare).

Stunned (but still smiling) I told her “Actually, I wasn’t moving. You walked into the pram.”

“You’ve got an attitude problem!” she shouted. “Sort yourself out!”

Sigh.

I didn’t bother saying anything else as she stormed out the door, but part of me really, really would have loved to mail her video footage of the ‘alleged incident’ so she could see what actually happened. It’d be nice to have my name cleared (I have a clean pram driving record up until now).

It reminded me of an incident that happened years ago when BC was still a baby and in a baby carrier on my chest. I used to talk to him all the time, telling him everything I was doing (stimulate those neural pathways!).

A woman walking past with 2 small children heard me say ‘No, I don’t like the look of those” (I was talking about some mouldy punnets of strawberries) and she was CONVINCED I was talking about her children.

She called me quite a few names unprintable in this G rated blog. I tried to tell her I was talking about the strawberries. But that just made her more cross. So, again I just smiled and sighed with relief when she walked away.

I ran into that woman (not physically of course!!!) quite a few times after that. I always felt very awkward and guilty as though I actually HAD done something wrong. Thankfully I haven’t seen her for ages.

I really, really hope I don’t see the pram rage lady again. She was scary.

Despite the ‘pram rage’ incident, once we were in the pool, we had a GREAT time.

And I have some exciting news (exciting with a little ‘e’).

BOTH my boys blew bubbles in the water for the first time.

YAY!!!!!!!!!!!!!

Water baby Bean did it first. Because there were lots of claps and cheers, BC decided he had to have a go too.

He blew bubbles twice until the count of 10. This is the first time he’s even TRIED to blow bubbles.

They were both so thrilled. It reminded me, yet again, of what great motivation sibling rivalry can be. ;-).

Connected by cake and krupuk..

16 Mar

Sundays are good days. I love them. I love lazy Sundays when we just loll around the house and I love busy Sundays when we get out and about and do fun things. Yesterday was a busy Sunday.

We headed into the city by train.

longest-cakeThe main reason we went in was to attend Melbourne’s Longest Cake – an annual event to raise money for the Cerebral Palsy Support Network - that  involves a LOT of people volunteering time, expertise and a lot of flour and eggs to make a very, very chocolate big cake – it was 100 metres long last year. I haven’t heard how big this year’s was, yet. But it was big.

I think the idea of the event is very clever. Money is raised by people and organisations sponsoring a section of the cake and also by people who attend the event and buy a piece of cake. There is also live music, guest appearances by footballers and Australian idol finalists etc.

Last year they raised $60,000. Not a bad effort for a cake stall!

The last few years the event has been outdoors, but because the weather wasn’t looking very promising it was moved indoors to a very fancy room inside the Crown Casino. Even though it was a shame it wasn’t set up on the busy (and pretty) bank of the Yarra river where it was quite a spectacle and could attract the attention of passers by, I loved the indoor venue. It was much more accessible indoors and there was a real party atmosphere.

However, the music was played way too loud and it was barely possible to talk. Which was a shame as I’d arranged to meet some lovely friends there and we had to do an awful lot of shouting. And worse, BC couldn’t cope with the noise. He wanted to leave as soon as we arrived. He didn’t even want to eat cake. This, after him asking me every 15 minutes for the past week, ‘When’s Sunday? I want cake’.

A couple of friends told me their children  also found the noise a little overwhelming. I don’t know how widespread this sensitivity to sound is with kids with CP. I’d be curious to know. I’d be even more curious to knobc-longest-cake2w how we could overcome it. And don’t worry, there’s already a draft of a letter to the organisers to advise them about possibly reconsidering the volume control for next year ;-).

Despite wanting to leave, BC was a trooper. Ibc-eats-cake think he got a little more used to the noise (or resigned to it?) after a while and we ate cake – a couple of huge slabs of it.

We even had a little dance to Carl Riseley – a runner up on Australian Idol a few years back. He was fun. And we got my aunt the autograph of a well known Australian Rules footballer. Pathetic Melbournian (home of Australian rules) that I am, I had to ask a friend to point out to me which one he was (thanks Belinda!). My aunt will be thrilled.

When we left, the Longest Cake was considerably shorter but I am sure my thighs were already considerably chunkier.

From there, we headed across the river to the city Immigration Museum for an Indonesian festival, which was already in full swing.

tari-payungWe had some lovely sate and krupuk (similar to prawn crackers), watched some great traditional Indonesian dancing and even caught a little of a Wayang Kulit performance (shadow puppets).

I love taking the boys to Indonesian events. I value them feeling as Indonesian as they do Australian.

Whilst these two events had no apparent connection, it later occurred to me that they were actually very connected. Connected because they were both events that we attended with a real sense of belonging. And it occurred to me just how important that is to me. Belonging.

It’s great being in a place where I can have an animated conversation with a stranger about the benefits of fixed or swivel wheels on a kaye walker, where BC is one of many making continued and effective use of the  makaton sign for ‘more’ (as in more cake ;-)) or where I know everyone else is also wondering why on earth there wasn’t a ramp leading up the stage so it would be accessible to all prize winners and guests. OR where I can speak Indonesian, discuss whether sate is better eaten with lontong or  rice, drink es cendol and compare favourite traditional dances – mine is Tari Saman from Aceh.

In case you’re interested, here’s a youtube video of the dance (a performance on a much grander scale than we saw on Sunday!). It’s a little shaky, but was the best I could find. Hope you enjoy!

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 ;-).

A love story.

2 Mar

I haven’t forgotten about writing my other ‘Sydney’ posts, but I have been really really busy since I returned. I will write them in the next couple of days.

In the meantime, I wanted to share this link to a video of a story that featured on Australian TV on Sunday night – I hope it’s accessible to everyone as it’s a really lovely piece about a couple with CP who married and have two teenaged children. It’s a little bittersweet, as society haven’t always been accepting of them (and listen out for the story about when he asked for her hand in marriage ;-)), but it’s mostly a really lovely story about two very determined and caring people who love each other dearly and who have refused to let their disabilities define them.

‘A different love story (their title, not mine!)

Enjoy!

Guest Posts from the kinder team….

18 Feb

Well, this is SORT of a guest posting…. LET me explain.

We are loving BC’s new kinder. His teacher and regular assistant are FABULOUS, CARING and PASSIONATE about what they do. It’s lovely to watch.

AND BC’s new kinder assistant is AMAZING, DEDICATED, MOTIVATED, INFORMED and just one of the nicest, most genuine people I’ve come across in recent years. She’s also the mother of a 7 year old girl with cerebral palsy, so she knows a lot about CP, inclusion and advocacy. AND she’s a lot of fun. BC told me so tonight.

One of her suggestions was for me to place an exercise book in BC’s bag so she, the teacher and the other assistant could communicate with me. I did as she asked and wrote a short paragraph in there this morning, as I was neither there to drop off or pick up BC today.

About an hour ago, as I was checking through his bag, I remembered the book, so thought I’d check to see if there were any messages left in there for me. I was expected maybe a sentence reminder or something I’d forgotten and a simple sentence about his day….

Guess what I found?  THREE pages of notes, one page from each of the staff members and even a strip of very cute photocopied pics from the day.

WOW.

I can’t tell you what this means to me. This hardest part of having a child with limited communication skills is not being able to share in experiences he’s had when I’m not around. It just hurts that he can’t TELL me what he’s done, what he’s enjoyed, what may have upset him etc.

I’ve been trying (in vain) to get BC’s child care centre to give me ANY kind of information about what he’s done during the day, things I might need to do, bring etc and I’ve had next to nothing.

So THREE WHOLE pages of notes about his third ever session of kindergarten was overwhelmingly special.

Once I read the book, I sat down with BC. We used his PODD communication book, signing and speech to talk about the activities and other things mentioned in the book, looked at the photos and talked about the different kids. WOW. He was so animated and excited. It was AWESOME.

AND just so you know what I know now, I can tell you he had a fab day today. Don’t take my word for it, here’s just a few excerpts from the book:

Ms B (our new assistant)

“He was using his communication book great. I added the word ‘dolls’ to his things list as we had water play outside (washing baby dolls). He then chose ‘sandpit’, ‘swing’ and ‘bridge’. Ms J (teacher) is happy to make a little bag to put on his walker for his communication book. She has some dinosaur material. I asked BC if he would like that he said yes. He also thanked Jenny. He is such an adorable boy and a pleasure to work with”

Ms J (teacher)

“I will take measurements for the bag and make is ASAP. BC has really enjoyed today’s session. Inside he had lots of fun in home corner, pretending to eat fruit and have afternoon tea. He had a fit of the giggles when Miss C was racing in and out of home corner and they pretended to talk on the phone. He did a fantastic job packing up the tea cups and dishes…a very happy session!”

Ms E (regular kinder assistant)

“BC raced after me to check out Miss M’s treasure and then indicated he wanted to go in the cubby house. In there he played with Master L. BC covered him up and he began to snore. BC thought this was a good idea so he got into bed and Master L covered him in a blanket and BC began to snore! It was such fun that everyone wanted to join in. He had a wonderful time”.

It’s all simple, simply stuff, but thrilling in just how ‘normal’ it is (sorry, I hate that word, but I think you get what I mean!) and I hope you can see why I am already looking forward to savouring the next instalment of his kinder diary (as I’ve decided to know call it!) on Friday……..

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