Archive | March, 2009

Be honest with me.

27 Mar

Well ahead of schedule BC’s stroller was ready for us to pick up today. YAY!

We decided we might as well go and get it straight away as we WEIRDLY didn’t have anything else on this afternoon.

The lady I spoke with told me we could drive into the hospital car park as there’s a little parking bay for collecting equipment and the first 20 minutes is free.

Great.

When we arrived, BC wanted to walk in. I was a little worried about our 20 minute limit, but figured that we still wouldn’t be long and the walk wasn’t far anyway.

The lady was waiting for us, she helped adjust the chair and told me quickly (rather than showing me) how to fold it as BC decided he’d rather sit in the chair back to the car instead of walking.

The stroller  is great. It’s easy to push and is comfortable. BC was very impressed.

We had a very brief discussion about the stroller, and about the process for getting a different stroller, or wheelchair that he can push himself, in the future. It sounds like the process of changing over in the future will be easy. Great.

It was so refreshing for everything to be so easy and well organised. Fantastic.

But then.

When we got to the car, it turns out that I hadn’t paid very good attention to how to fold the stroller.Not the first time a piece of equipment and a simple set of instructions has bamboozled me.

So, it took a while.

This meant, when we drove around the corner to leave the car park, we’d been there for 24 minutes.

That’s 4 minutes over the ‘free’ time limit allocation.

And they wanted me to pay $5.00.

I explained that I was only over time because I couldn’t fold a piece of equipment that I was here to pick up. The attendants were so close to where I had parked, I was surprised they hadn’t been watching me do battle with it (or heard me. I am a potty mouth when I get frustrated).

They said it didn’t matter. They said they couldn’t ‘override the system’ and asked me to pay.

I refused.

It wasn’t about the $5.00. It was because I felt a little common sense should have prevailed.

I would be happy to pay IF we’d gone to the onsite McDonalds after getting the chair (and no, I am not joking. We really do have a McDonalds in our city Children’s hospital). Or if we’d been late because I’d had to take BC off to the toilet. Even if we’d been really over the time limit because it all taken a lot longer than anticipated.

But everything had gone so smoothly up until the car. And it was only FOUR minutes.

It just didn’t seem to make much sense to me. And I really hate it when anyone turns to the mighty power of the ‘system’ that a mere mortal has apparently no control over.

They rang their supervisor who told them if I wanted to get a waiver from paying I had to drive up to the main building, park the car, take the kids out,  find her office, fill in a form and ask for the $5.00 to be waived. It was already 3.30pm. If we left right then, we might miss the worst of the peak hour traffic. But not if we had to do that.

I spoke to the supervisor and laid down my case. Finally, she agreed I could leave my driver’s licence details and a phone number with the attendants and the manager could call me later. That sounded fairly reasonable to me.

I still haven’t heard from him. I am half expecting not to but also half expecting a bill for $5.00 in the mail (or maybe more – administration fees?).

So now.  Home. Not stressed by a stroller that I couldn’t fold. Not facing the prospect of peak hour traffic. And realising that $5.00 really isn’t that much money after all. I feel a little silly. I think it’s very possible that I could have been in the wrong.

After all, they were just attendants. Maybe the ‘system’ would have docked their pay if $5.00 was missing. And I was after all, over the limit.

So. I need you to be honest with me. Did I overreact?

Happy Birthday Little Bean!!

25 Mar

Today, my beautiful little Bean turned 2.

I know he doesn’t get a lot of attention on this blog. I wish in real life I could give him more attention too.

He spends a lot of time in the car, a lot of time at appointments that are not for him. A lot of time being told ‘no’ and ‘wait’ and ‘later’.

Let me tell you about a few of the things he likes to do. He likes to sing. He likes to dance. He adores the Wiggles and knows most of the moves to most of their songs. He loves to twirl and twirl around until he gets dizzy and falls and then gets up and does it again. He loves to laugh. He loves to eat bananas and apples and chicken and watermelon and rice-crackers, but not much else. He loves to go to the park and swing, and swing, and swing. He loves to give kisses and cuddles. He loves to watch trains, travel on trains, even to see a train track. He loves to take his brother’s kaye walker for a spin, but always gives it back when his brother wants to use it. He loves to take his father for a walk (fabulously the other evening, all the way to the shops, with his dad already wearing pyjamas). He loves to stand and watch elevator doors opening, clapping at the people who come out like they’ve just won a race. It always makes them smile. He makes a lot of people smile. He makes ME smile.

Thanks for being so beautiful little Bean. And so patient. And so caring. I promise that we will have more time together to do special things for just the two of us.

little-beans-birthday

Happy Birthday my gorgeous boy!!!!

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.

Stem Cells

21 Mar

One of the (many) reasons I’m inclined to forgive Obama for his stupid ‘Special Olympics’ comment is because a couple of weeks ago he lifted the ban on stem cell research.

I don’t know a lot about stem cells. And I don’t know if stem cells hold the answers to effectively treating cerebral palsy and other conditions and diseases.

But I also know that they might.

Obama said on the day he lifted the ban:

“Ultimately, I cannot guarantee that we will find the treatments and cures we seek…But I can promise that we will seek them”

That’s enough for me.

Even if no treatments and cures are found, or even if they are but don’t happen in my lifetime, or BC’s lifetime, the research should be allowed.

I am glad that it is.

Because the limited research done so far, is promising.

Last week I read about this little girl from Australia who has been to Germany for stem cell treatment.

It’s expensive. Very expensive. But this family says they’ve seen results. They are already fundraising for more treatments. See their blog here.

I hope further funded research leads to further success, lowered costs and ready access for all to any successful treatments available.

I know that any successful widespread treatments that result from any research done could be 100 years away. But then again, it just might….it just might be around the corner.

Bring on the research!!! Like many others I’ll be keeping my eyes open for for news.

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 ;-).

Coincidences

20 Mar

I have had a week of weird coincidences.

On Monday, I was talking to another mum, telling her how much trouble I was having finding a swimming teacher for BC who has some training teaching kids with physical disabilities.

She told me how great her son’s teacher was. How she had some training in special needs swimming education and what a difference she’d made to her son’s confidence and ability in the water.

I had a pen ready before she’d even finished. What’s her name? Where does she work? We’ll travel to the other end of the city to see her.

Only to discover, she has just started working at a little pool less than a 15 minute walk from our house.

(We’re arranging to meet her next week).

Then on Wednesday when I was having a grown up day working in the city, I ran into a friend of my husband’s. Not so uncommon you might say. Except for the fact that he’s from a small Sumatran village and last we heard was living in the Solomon Islands.

On Thursday morning when I was still working, I needed to stop in at an office in the city to sort out a personal business matter. I only had a 1300 number, so I rang them from the building I was working in and asked them where they were located – it was THE BUILDING NEXT DOOR. I got the job  done in my morning tea break!!

Then, on a more serious note, on Friday, the day after the tragic death of Natasha Richardson  from what had seemed, at first, like a minor head injury, I  slipped over and fell heavily, giving the back of my head a very good thud on the floor.

Like Ellen over at ‘To the Max’, these days I take a lot of interest in brain injuries so I had been reading a lot of the media covering what happened to Ms Richardson, including this article about ‘Talk and Die syndrome‘ (who names these things??).

So, whereas a week ago I would have just popped a panadol and probably not given the consequences of the fall much more thought, I took myself to the doctor.

I did feel a little foolish going there, seeing as apart from a headache and a sore neck, I felt fine. But they were great. They got me in to see a doctor straight away and took my concerns very seriously. The doctor even told me he’d been speaking to a colleague and they’d been discussing how they hoped the tragic incident might encourage people to take head injuries more seriously in the future.

It’s a shame that’s often what it takes.

He checked my pulse, my pupils, my balance, my left eye/right eye vision, my sense of touch and of course the part of my head that hit the floor.

He gave me a list of warning signs to look out for over the next few hours/days, but told me the odds were that I would be fine.

I still have a bit of a headache and a sore neck this morning (apparently common from jarring of muscles) and a bruised ego – I can’t believe I slipped over on the kitchen floor.

I feel fine, although very grateful I am alright and that I have such a good, caring medical clinic nearby. Mostly though I just feel humbled yet again by the precarious and delicate nature of the human brain. And the randomness and unexpectedness of a fall.

My thoughts are with the family of Natasha Richardson. She has two young sons. She was young. She had a lot to live for. Sometimes life is very unfair.

And yes. I will be more careful in the future. No more running in the house :-(.

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. ;-).

Attention, Attention!

18 Mar

I don’t like getting attention, but we often get attention when we are out, regardless. I know people are curious seeing a little boy in a walking frame. I know they wonder what it is and why he has it and that some are curious enough to ask the dreaded question “What’s wrong with him?” (to which I replied, honestly, just a few days ago as he raced along a footpath at the peril of anyone in his path ‘He ate far too much cake. He’s having a sugar rush. Don’t worry. It will wear off soon.”)

So on the train on the way home from work today (yes! I am having another couple of days playing with the other grown ups!), I couldn’t believe that I read there are people out there, in the good old USA PAYING money, and lots of it, to be followed around by a pretend gaggle of paparazzi, all for the sake of them  getting a kick out of the attention from onlookers wondering what celebs they are.

Really?

YES.

And I take it the company is reasonably successful seeing as they operate in several cities and with a wide variety of packages.

I honestly, honestly, just don’t get this at all.

OK, so that’s probably partly because  IF I were famous and followed by the papps, I’d be the weekly feature of all those ‘Blooper’ style sections with my undies accidentally tucked into my skirt, picking my nose and showing off chunks of cellulite.

BUT it’s mostly because I can’t see the attraction of being watched and wondered at by strangers. Not even a little bit.

Instead, I wish longingly for days when no-one thinks of looking twice.

I hope it’s one of the great side benefits of inclusive education that the kids at BC’s kinder won’t look twice if they see a child in a walker in the future.  That’s it’s just another kind of normal to them.

So no. I won’t be spending $3000 US on the ‘Celeb 4 a day Megastar Package‘.

Still not convinced? Just for fun (and to make us mere mortals feel better about ourselves) here’s some more reasons why I just don’t get why anyone would pay for paparazzi attention ;-) :

ABC ENTERTAINMENT ‘Rich and Famous caught off guard’.

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 ;-).

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