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Mother’s Day

8 May

I know Mother’s Day isn’t officially until Sunday, but in our house, Mother’s day was today.

Why?

Because today was the day of the Mother’s Day lunch at BC’s kinder.

He’s been looking forward to it since he first told me last Wednesday.

Every day since then he’s asked me about 20 times – ‘When is Mother’s Day at kinder?’.

He was thrilled about me, and all the other mums, coming to kinder to have lunch with all the kids. He was also very happy about the (secret) present he was making for me.

It’s the first time he’s been excited  about Mother’s Day and I was surprised by how much it touched me.

This morning, from the moment he woke up, he was super, super excited. He asked me several times when I dropped him off what time I would be back. He even said ‘Don’t forget Mother’s Day lunch’.

He needn’t have worried, I’ve been far too looking forward to it too to forget!

I returned at 11.30, as scheduled, with a very sleepy little Bean (who’d been dragged from his morning nap to unwillingly attend).

We firstly did a dance with all the other mums and kids. I was proud that BC knew most of the moves.

We then dined on vegetable soup and damper, prepared by the children (both very delicious!) and a yummy slice made by a parent.

We ended with us being given a gift made by our children, which is still sitting on the top of the bookshelf.

BC insists I should be opening it today because today is Mother’s Day.

And I think he’s right. It feels like Mother’s Day to me.

But still, I am going to wait until Sunday to open it, only because I want to hold on to this warm fuzzy feeling just a little longer.

Since my own mother passed away when I was 17, Mother’s Day has always been a sad kind of day for me. All the advertising and happy family images just rubbed salt in the wound that I didn’t have that special person in my life any more. I’d learned to steer clear of the media in the weeks leading up to Mother’s Day. (I had, and still have, other special days when I remember and celebrate my mum).

For this reason, Mother’s Day has never really mattered much to me since actually becoming a mum myself, but now that it matters to my child, it suddenly seems like a really, really special day to me.

I will look forward to Mother’s Day in future years when both BC and later on Little Bean want to celebrate this special day with me.

Happy Mother’s Day (for the ‘official’ Mother’s Day on Sunday) to all the mothers out there!! I hope you get spoilt rotten! You deserve it xo

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

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

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 ;-).

Access all areas? NOT in Sydney!

28 Feb

I have so much to say about our recent trip to Sydney, especially about our foray into learning about ABR, but that will have to wait – it will be  a LONG post, and I don’t have much time here.

What I DO have time for, is a critique of the Sydney rail system. Actually, the words  ‘damning report’ might be a little more suitable!

It’s not the first time I’ve been to Sydney, but it sure was the first time I discovered just how ridiculously inaccessible the train system is for physically disabled people/parents with prams etc. And this in turn has made me realise just how incredibly GOOD access is in my home city, Melbourne.

The main problem is that at most suburban train stations there are stairs in Sydney (going UP from the platform) as opposed to ramps in Melbourne (going down from the platform). I know that they can’t totally be blamed for this design flaw, as the system was built a very long time ago. However, I am appalled by how little has been done to rectify the problem and makes things more accessible.

Unfortunately, several of our destinations required us to arrive and depart from stations with no access. This meant we needed help to get up and down each set of stairs. THANK-YOU to all the kind young gents of Sydney who offered this help (especially to the guy carrying a large guitar case over his shoulder as he helped haul 15kgs of BC + pram down the stairs!). Thanks also to the lovely ticket seller who left his booth to help us up a nearby short flight of stairs, apologising profusely as though it were entirely his fault that the stairs were there in the first place. He grumbled that they could easily have placed a ramp there instead and yes, most definitely they could have!

Unfortunately for us also, when we arrived at one of the main central train stations which DOES have lifts from every platform, the lift that we needed was out of order. I asked one of the staff if he could help us up the stairs. ‘Easier if you take a train to the next station’ he said. ‘The lifts are working there’. Easier for who?? Not us, as the station we were at was right where we wanted to go. When I then asked the staff member if HE could help us up the stairs (unfortunately there were no young Sydney gents around to offer), he pointed to BC and said ‘Just get him to get out and walk up. Then you can carry the pram’. I pointed out that he would if he could, but he can’t walk. To which he replied, ‘Well, how was I supposed to know?’. Then shrugged, and walked off. SO I carried him up the stairs myself. SIGH!

Even more unfortunately we found ourselves back at that exact same train station a few days later. I was sure there was NO way we could need the SAME platform with the broken lift, and anyway, surely the lift would be fixed? This was one of the biggest stations in the city! But nope. No lift. And yep, you guessed it. We needed to get to that same platform. Fortunately though, we found some much more helpful CityRail staff who gladly assisted us to the platform. I asked one how long the lift had been out. ‘Over a week’, he said. ‘They’ve been and looked and reckon it’ll be a lot longer too. She’s stuffed’ (Aussie speak for very broken, possibly beyond repair).

I was going to raise with him the question of why there weren’t announcements at every suburban train station heading to that platform that the lift was out of order, but realised that it was hardly his fault, and he’d been so helpful that I didn’t want to seem ungrateful. BUT I am drafting a letter to the powers that be at CityLink (and the Sydney Morning Herald) as we speak.

So, is this a case of good old Melbourne/Sydney rivalry? I don’t think so, at all. As I said, I honestly had no realisation about how GOOD access is on the Melbourne rail network until I discovered how BAD it is on the Sydney network.

And even though I’ve been mostly focusing on the physical access to and from the platform, there’s loads more. Poor signage, poor access to ramps to and from trains, less staff  for assistance – I could go on.

And you want some stats to prove my point? Well, here they are:

Train station accessibility in Melbourne – 100%

Train station accessibility on the Sydney and surrounds CityLink network – 36%

There are definitely still problems in Melbourne. A percentage of our famous city trams are hard to access because of steps and only 50% of buses are wheelchair accessible.

BUT in the 4 years since having children (and regularly using public transport) we’ve not faced as many challenges accessing transport as we did in our 4 days in Sydney. Sort it out Sydney!!!

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