Tuesday, 1 December 2009
In that eleven months, however, Princess' confidence has grown enormously, something I think we can largely thank her fabulous year at school for. This time, driving the power-wheelchair she was suddenly braver, more daring and more able. It was awesome to watch. The smile couldn't be wiped off her face (well, except for the one time she crashed hard into the wall, but that's another story). (She's fine now).
One other thing we learned is that Princess isn't always going to be the polite, demure little girl she usually presents as. We had her practising her skills in the power-chair in some open space near our house. We happened upon one of her teachers, who eagerly watched Princess independently maneuvering herself all over the place.
As Teacher and I were chatting, Princess hurtled towards us, stopping perfectly in time as we lavished praise upon her. Then, just as Teacher bent down to her to continue lavishing praise, Princess looked at us cheekily and started doing tight donuts in front of us. Round and round she went, with me requesting that she stop and make eye contact while Teacher was speaking to her...but no. Round and round, giggling as she went.
Hurrah - she's obnoxious too! Go Princess!
Sunday, 1 November 2009
So you can imagine the inspiration I feel when I read about people who not only dream big, but actually achieve great feats, seemingly against the odds.
People like Hilary Lister, a woman with severe quadriplegia who has sailed solo around Britain using a 'sip and puff' system to control her sails and steering. Here's the video of how she does it.
I hope one day Princess can feel that sense of flying and freedom that spurs Hilary on. That she will have the drive and 'never say die' attitude she will need to achieve her great things.
Meanwhile, I'd love to know - who inspires you?
Tuesday, 13 October 2009
Once at our tea-room-and-gardens destination (before the return trip) the train theme continued, with Princess' wheelchair being transformed into the P.P.No.6 - Pink Princess No.6 Engine, o'course. Little Man driving, with Princess and Chuckles shovelling and stoking, as you do.
Anticipating the 'toot'.
The Station Master and Drivers gave us some old railway magazines to fuel Chuckle's obsession. He LOVES them. Thanks to all at the Durundur Railway, Woodford - a thumbs up from all of us!
Tuesday, 29 September 2009
Yep, it's been ten and a half weeks since my last posting (how Catholic-sounding of me), but I'm gonna try REALLY hard this time to keep a regular commitment.
Ok, so life's been very full over the last few months. Nothing new in that. Well, apart from my brother's wedding interstate, at which ALL THREE of my kids were in the bridal party, and I was MC! Eeek! No pressure! It was a wonderful time though, the kids rose to the occasion and we all had fun catching up with LOTS of family, old and new. Thanks Unca J and welcome to the family Aunty C!
Then there was our holiday to The Snow. That was hard work, but fun. Kind of. Might have been more fun if we hadn't arrived in the middle of a blizzard, but hey, now we can look back and laugh. Golly, it was cold. Beach next time.
What else? Oh yeah, the usual flurry of school routine and activity - the massive annual School Fair, school projects, after-school sport, playdates, therapy appointments, toddler gym, International Talk-Like-a-Pirate Day, oh, and work. And lots of other stuff in between.
And then there was that horrible week when my Darling Hubby was rushed to hospital with a sudden and life-threatening problem that was finally resolved by surgery after he lay in extreme agony for three days, before developing a secondary problem which was also very serious before he finally got better enough to come home. Thank goodness that week is behind us.
So, during all this I've been playing with my new toy - an iPhone. MY iPhone. I'd been interested in getting one so Princess could have something to access and play with. The touchscreen really is quite fab, and Princess does have some fun with it. I'm scouring for applications all the time that are useful for her and the boys. It's so easy!
What caught me by surprise is how much fun I'm having with it! It's great! Not so much as a mobile phone, but as a hand-held touchscreen computer it's beaut.
Little Man likes to borrow MY iPhone to play games on every now and then. Sometimes he gives it back to me with a maniacal laugh, and it took me a while to work out why. I recently opened the 'shopping list' application (daggy but handy) - you may have already guessed, this post's title is what I read on my shopping list...
Chips. for me.
Ahh, eight-year-olds...don't you just love 'em?! Can't wait to discover what else lurks in there.
Friday, 17 July 2009
It seems I’ve been missing for a bit. Life has a tiresome habit of getting in the way of regular blogging! So here's a simplified update on what we've been up to - the very ordinary lives of, well, us.
Princess particularly enjoyed getting 1st place in the wheelchair race (between her and one other boy who'd recently had complex surgery on his foot) - it helped that her 'pusher' was a fit young student teacher, keen and raring to go!
She also had fun in the Prep Relay race, the Jumping Ball race (with the ball between her legs while one of her friends pushed her chair, jumping), the Egg and Spoon race (holding the spoon ever-so-tightly!), Throw the Bean-bag in the Bucket, and of course cheering on her team for other events. She took a keen interest in the tallying of house points and was keen to scorn the other houses at any opportunity - we will teach her about good sportsmanship for next year!
Princess also ended Term 2 of school by receiving a Student of the Week award at her mainstream school! She was awarded for speaking up and answering questions loudly and clearly without the pregnant pause we've come to expect from her. Or, as her teacher put it "Patient [Princess] perceived the perils of Prep, prudently, quelling a penchant for prattle and proceeding with precision" (apparently the preppers really dig alliteration). Yay for Princess!
We were present at the whole school assembly at which she received her award. We were worried how Little "everyone in the WHOLE school knows HER, and nobody even knows I'm her brother!" Man would feel about it. So it was really extra special when Mr C, the school principal, invited Little Man up to the front of assembly as Princess' Important Older Brother, to assist her in receiving her award. I couldn't really see what was going on for the tears in my eyes, but I could tell Little Man was happy and proud to receive the acknowledgement he's craved all year, and Princess was genuinely surprised and thrilled. Of course, it was right at that time that my camera battery failed, but thanks to my good friend Merc, we have a picture to show...
During the school holidays, Little Man finally got a haircut (never thought it would happen, thank goodness he's open to bribes!), but even better than that, we celebrated his eighth birthday! We took him and a bunch of his good friends to the movies, followed by a feast of sushi, chips, vegie sticks, cake and lollies (all his faves). I've never heard the "you look like a monkey" version of Happy Birthday sung in such spontaneous unison before, and with such gusto! Little Man couldn't have been prouder. Awww. Here he is opening presents...
Happy Birthday Little
And finally a mention for wee Chuckles. Well, not so wee any more. Chuckles is bounding along - he's a happy fellow who adores his older brother at all the worst possible times, reveres his older sister but not enough to not steal toys/food/mummy's cuddles from her, and has the audacity to yell back at her when she yells at him for these misdemeanors! He often gets shuttled around from one commitment to the next, and it turns out he is a great companion throughout the day. And he is soooo adorably cheeky, he just always puts a smile on my face.
So that's a very small bit about us for now. Will try and post more often - easy to say, harder to do...
Tuesday, 16 June 2009
Here's a classic case in point, from a New Zealand TV Program. It's a great, hopeful story(for the most part). So it makes me wonder WHY did the headline have to read "Cerebral palsy patient gains, then loses, her voice". What's wrong with saying "Girl with cerebral palsy gains, then loses, her voice"? The girl in question was not ill, so she's not a patient. She's a GIRL.
People with disabilities are PEOPLE first. All with individual abilities, interests and needs. There's no need to stereotype anyone into being a condition that they may have - the CP boy, the autistic girl, the mentally ill man. Instead, the boy with CP, the girl with autism, the man with a mental illness.
This is called People First language. Sounds like common sense to me.
Monday, 25 May 2009
"No Mum" he said, removing his dummy from his mouth and adopting a posture of authority. "Dis NOT boooos. Dis JAZZ."
And with more coolness than Miles Davis himself, Chuckles popped his dummy back in his mouth and continued staring out the window as if he hadn't spoken at all.
I wish I had even a little of that confidence.
EDITED TO ADD: This morning Darling Husband remarked upon some clever little thing Chuckles had done. "You're a cool dude!" he said. Chuckles hit back with "No, I'm AWESOME!".
He is pretty awesome though : )
Thursday, 21 May 2009
Last Friday afternoon she had an inexplicably swollen ankle, but was tight-lipped as to how or when the cause of it happened, or even if it was hurting her. Finally, after a discussion about going to the doctor for an x-ray she blurted out that it DID hurt but she didn't want to go to the hospital (which we unfortunately ended up doing because no other x-ray places were open).
She then told us it had happened the night before (I remember the likely incident - had no idea she had actually HURT herself!). In hindsight, she had been teary that morning, but I couldn't pin-point why. All day at school she had quietly endured the pain, and after school she remained tight-lipped - all because she didn't want to go to the doctor. And who can blame her?
Sigh. A child's logic can be so heartbreakingly logical.
End result: No broken bones. Probably stretched ligaments. Definitely a much wiser mother. And Princess is all smiles again.
(PS. I know I'm not the only parent of a child who thinks things through...)
Saturday, 9 May 2009
Naturally, most of what has been taking up my time is kid-related. The school-day routine, the taxi-ing around. Dealing daily with what goes on inside a child's mind (it's never predictable). Appointments with schools, doctors, therapists, squeezing in the odd playdate, a brief moment of respite at the park with Chuckles. Every couple of days there's the '8-hr break' I call paid work. (That's a joke, actually. Not much of a break at all, though coming home to bathed children and a cooked dinner is a huge plus!). And then of course dealing with things coming out of nowhere that have to be dealt with asap! And they seem to happen more and more frequently.
Phew. I admit I had no idea this was what it would be to be A Mother.
But I'm not alone - I'm supported by my Darling Husband, who knows I know he does more than his fair share. He keeps me afloat. Save him for Father's Day.
I'm also lucky enough to have the support of my own Mum. My Mum, who has been there for me, always. Who, in addition to all the normal expectations of a grandparent (ie, loving, fun and caring towards grandchildren), has once again added routine child-care, taxi-ing, important appointment accompanying and provision not only of meals and baths (see comment above), but also provision of occasional family holidays and child-free weekends, to her formidable repertoire of skills. And there's so much more I haven't mentioned. What a woman. Mum, thankyou.
And while I'm at it, I must also add the support from my sister, Aunty T. She too is always there for us - a fun and reliable child carer, and quite often a saving grace. Definitely gets an honourable mention for Mothers' Day!
I've already been quite spoilt by the kids - Little Man and Princess have been busy beavering away at their gifts for me - not to mention Mothers' morning teas put on by Princess' Prep class and Little Man's Scouts troop. More homemade chocolates and coconut balls than you could poke a stick at!
I feel very blessed indeed.
And so to all the mums out there reading this, especially mine, I wish you a very happy Mothers' Day.
Thursday, 16 April 2009
In the meantime, some food for thought (and a bit of reading):
Some weeks ago, Sue Corrigan, journalist and mother of a teenage son with Cerebral Palsy, wrote an article for The Australian about the sorry state of disability services across Australia.
A few days later, Bill Shorten MP, (federal) Parliamentary Secretary for Disabilities and Children's Services gave this speech at a Press Club lunch in Canberra.
It's time for action.
Wednesday, 25 March 2009
This is the front of a home-made birthday card given to Princess by one of her new best friends, Miss J. They're in the same Prep class at the mainstream school. Here, Miss J is on the left, Princess on the right, obviously.
What I love most about this picture is the HUGE smile on Princess' face - Miss J nailed the portrait right there, pigtails and all.
And the sheer acceptance of it.
Tuesday, 10 March 2009
I can't believe how the time since she was born has flown by. What a beautiful little grown-up girl we have now. And the ups and downs we've had in those five years. The many moments of Princess's life that I replay over and over again in my mind, whether I want to or not. The guilt I feel that because of unknown circumstances in my body before and during her very premature birth, she has permanent physical impairment and there's not a damn thing I can do about it. Life-changing for us, and for her, in a way she will never fully be able to appreciate the way we do.
To be honest, I sometimes feel I'm as much in shock now as I was five years ago. When we first learned that not only did we have an extremely premature baby, but that she would have 'special' needs. That 'special' is a pretty big word.
And special she is. Princess is a delightfully cheeky kid, a happy little girl who loves imagining big stories, yelling at or with her brothers, playing with her school friends... And all the friends she has, child and adult, who delight in her achievements and enjoy her wry observations.
I've often wondered what she thinks about having a disability. There have been hairy questions from her in the past, and no doubt there'll be many more in the future. But she surprised me recently...
We were driving out to go shopping when I remarked that I'd forgotten to put our blue 'disability parking' sticker back in the car, having removed it earlier. Quick as a flash, Princess asked "Mummy, if we don't have the sticker, does that mean I don't have a disability anymore?"
My mind raced into panic. This was another of those moments, like the time she wanted to dance like her baby brother all by herself without anyone helping or any equipment near her, all by herself and wouldn't take "let's do something else" for an answer. I had to have a well-worded response. Be gentle but honest. Think...Think!
Then I heard a giggly chortle from the back seat. Looking in the rear view mirror, I could see a broad grin on Princess's face. Oh good one, honey. You got me. Phew.
"What do you think?" I asked her. Smiling her broad smile, she said "No, of course not! That would be silly!" Giggle. Oh bless you, my wonderful, understanding and well-grounded daughter. Until the next hairy question anyway.
So, like our darling boys, Princess has her life and we help her live it. She is quite truly one of the most delightful little souls that ever came onto this earth, and for all the ups and downs, I cannot imagine my life without her. We truly are so very lucky.
Happy birthday my oh so SPECIAL little girl.
Thursday, 26 February 2009
So, after his first week at school, and a weekend jam-packed with fun, Little Man succumbed to Sunday night-itis, and gee whiz, he's only seven. Sigh. He announced he didn't want to go to school anymore. The next logical step was to pack his bags and run away. This was at dinner time on a Sunday night - I asked if he wanted to eat before he left, and he told me no, he'd get something on the road. Oh, okay, if you're sure then.
We watched him go, laden down with his gear. We had hesitatingly kissed him goodbye, then spied through the front windows, hoping against hope this was going to play out in our favour.
It did. He got as far as the end of our driveway (about 20 metres from the front door) and stood there watching the sunset for a few minutes, no doubt contemplating the un-fairness of life. Then he shrugged to no-one in particular, trudged back across the front yard, rang the doorbell and greeted us with a huge sheepish smile. Well, maybe he might have dinner with us after all, and leave tomorrow when it was lighter. Good idea, Little Man, we all agreed. It's good to have you home. (Of course, by next morning, the whole thing was forgotten, and it turns out he had a great time at school. Phew!).
I'm pleased to say that the kid knows how to pack well - every contingency covered - clothes for all kinds of weather, spare undies and socks, a torch, a book (on science experiments - go figure), sunscreen and a hat, even a pen and paper to write home!
On that note (no pun intended!), Princess had been getting increasingly upset as Little Man had begun packing. She was in awe that he was attempting such a feat, but getting chin wobbles at the thought of him going too. Until, that is, he told her not to worry about him - he would write a letter to her every day, maybe even twice a day! "Really?" She was getting excited. "Well, off you go then! Don't forget to write!" She was yelling with excitement now. "Mummy, Little Man's running away from home and he's going to write me a letter every day! I'm going to get lots of letters!" (This actually comes out as "wots of wetters'. Very cute). She simply could not contain her excitement. Not exactly the support I was hoping for.
Lucky for us, Little Man's internal compass still points to home, no matter what.
And (completely unrelated) he makes a dapper Qui-Gon Jinn, I reckon. The ensemble below was put together for a 'space' themed costume day at Joey Scouts. Every child there turned up in a Star Wars themed costume. The Force is strong indeed.
Tuesday, 17 February 2009
The clinic was another chapter in a long journey we began two years ago - that of ABR. Put very simply, ABR or 'Advanced Biomechanical Rehabilitation' is a unique therapy which improves tone, strength and volume of the musculo-skeletal structure in children who have moderate-severe physical impairment due to brain injury.
We began it with Princess when she was just 3yrs old. We travelled to Singapore to learn the therapy technique, which is like a form of compression massage, and since then have been striving to complete many hours per week of hands-on therapy. We also use what's known in ABR circles as 'the machine' (actually a small compressor with bladders attached which are wrapped onto Princess's body while she sleeps) to help deliver the therapy to her in every spare moment!
It sounds whacky, and we were a little sceptical when we first heard of the therapy a good eighteen months before we decided to give it a go. But we wanted to be in the driving seat where our daughter's future was concerned, not at the behest of doctors, or relying on intermittent therapy from over-worked and under-funded service providers. We knew it would be completely up to us to carry out the therapy. We knew it would take time, years even, before we saw results.
And guess what? ABR works. Simple as that. We can say this now, two years in, because we have seen positive changes in Princess' body that were hitherto unpredicted by our 'mainstream' therapists, and certainly never expected by us.
For example, in 2007, just before we started ABR, we had been warned by doctors, surgeons and other therapists that Princess' hips were misaligned to the point of being in grave danger of severe dislocation - this would no doubt cause scoliosis in her spine (which could already be detected) and other stresses on the rest of her body. We were urged to consider radical boney surgery, sooner rather than later. If we hadn't resisted, this painful surgery would have taken place in Jan 2008.
We did resist the surgery. And at an orthopedic hip review last month, Princess' hips, although still misaligned, were not as bad as they had previously been. There's no worsening of the scoliosis. We don't need to go for another review for six months!
In addition to this, until eighteen months ago Princess had a track record of being hospitalized with bronchiolitis a few times a year. Any virus going around would go straight to her chest and bam!, hello hospital. Again. Well, without wishing to jinx anything, I'm pleased to report that Princess has had nary an issue with her respiratory system, or anything else for that matter. She is more robust than ever, her body is filling out, her muscles are gaining bulk where there was none previously. She's a healthy, happy kid!
All this is great, and we believe we can thank ABR for much of it. However, it does come at a price. The clinic fees aren't cheap, not to mention the cost of travelling to the clinics (thankfully we are able to attend clinics in Australia now, rather than having to travel to other parts of the world). Most of all though, it's the investment with our precious time that is the hardest one to make. But we do try hard. And thankfully, we think it's worth it.
NOTE: I feel I need to add that although we have chosen ABR as an on-going therapy for our daughter, we do not by any means discount the work of other therapists/therapies that may also have benefits for her. We willingly accept advice from all our therapists (unless they mention surgery!!), knowing that Princess is constantly learning and growing from their contributions.
Tuesday, 10 February 2009
It's an unbelievable tragedy, still being played out. Our hearts go out to the victims who are left with nothing - who are still seeking loved ones, have lost loved ones, who have lost all their possessions, their homes, their communities. The nation is grieving with you.
Wednesday, 4 February 2009
I am pleased to report that things are going well. For Princess, things are going better than expected (so far!). Maybe not so much for Little Man, but we're working on it. He didn't really want to participate in our first day photos and was pretty cool about going up to his new classroom and just getting on with things, but we all know still waters run deep, and that's a whole other post... Overall though, they've both had a good start to the school year.
For her Prep year, Princess is actually attending two schools - three days a week our local state school, and two days at a nearby special school (officially an ECDP, but don't ask me what that stands for!). We're hoping this combination will cater for her needs socially, intellectually, physically, etc. By the time she begins Grade One next year, she'll be ready to hold her own in the mainstream world!
Anyway, Princess's first ever school day began at home like this...
factory default face on, but she was clearly happy to be there.
We met her teacher, the fantastic Mrs A, and her new teacher aide, the lovely Ms L. We are really pleased that Ms L is a full-time aide to Princess (as well as another little girl in the class), for the three days she's at that school. Ms L has many years experience working with kids with extra needs, and they've been getting along well.
Thankfully, her teachers already knew lots about Princess before we arrived. The previous week, our OT, AVT:PI (that's Occupational Therapist and Advisory Visiting Teacher:Physical Impairment, respectively) and myself had given a powerpoint presentation all about her to the entire school staff, taking up a fair amount of their pupil-free day too. (Now staff come up and say hi to me all the time, and I haven't a clue who they are! This happens a lot around Princess).
Her OT and AVT:PI were also there on the first day, making adjustments as necessary to the two posture chairs and corner seat acquired for the classroom. A tradesman had been putting the finishing touches onto the purpose-built cubicle in the adjacent bathroom, big enough to accommodate a toilet chair for Princess, with an accessible sink, and we managed to put together a makeshift change table in there as well.
Parents were welcome to hang out for as long as they needed. I stayed quite some time, not because Princess wanted me there - she couldn't have given two hoots! - but it took a while to get the equipment set up right and I was asked to give my input, so I did! I saw Princess happily listening to Mrs A during circle time on the floor (albeit in her wheelchair on the first day - now she sits in her corner chair on the floor with the other children).
After morning tea, Princess sat in her posture chair with a few other kids at the specially-acquired inclusion table to help make a batch of playdough. Another boy she knew from kindy held the bowl for her, unprompted, when it was her turn to stir. I was impressed.
As I finally left, Ms L was about to take her outside to do some easel painting standing up. I kissed Princess goodbye, she gaily said "Bye Mummy, see you when you pick me up!" and didn't look back. Yippee, I sung to myself. This is great. The school has been wonderfully supportive, and the effect has already been positive.
Long may it last.
Back home at the end of their first day the kids didn't feel like smiling for the camera anymore, preferring to ham it up. But truly, they'd had a good day...
Next instalment, First Day at The Other School, coming soon...
Monday, 26 January 2009
And now I have not only my big Little Man going back to school, but our Princess begins Prep tomorrow too. She's very excited, though she admitted to me tonight that she was feeling "a little bit nervous about it". We're all prepared, her new teacher and teacher's aides are prepared, after two years of kindy I think Princess really is quite prepared. And yet I still have no idea what to expect. Lucky for me though, I know Princess will work it out.
One of the best things that happened during the holidays - Princess finally got her first ever manual wheelchair, and of course, it's pink!
Until recently, Princess has been getting around in a supportive stroller, and while it's been very useful, there was no way she was going to go to big school in a stroller! That's for babies! So after several months of measurements, waiting for funding applications to process and of course the wheelchair to be custom made, we finally have it, just in time for the start of school.
I wondered if I might feel sad about the finality of Princess having a wheelchair - the fact is that she is unlikely to ever be able to walk, though we could kind of pretend when she was only in a stroller like so many other very young children...
But nope, I am actually excited about the wheelchair. A wheelchair means an instant explanation - yes, my daughter is special, yes, she uses a wheelchair, end of story. No need for sidelong glances from strangers wondering why does that child still use a stroller at her age?
She looks great in it too, don't you think? (The pics were taken when we were flying kites on our beach holiday on Queensland's Sunshine Coast).
And the company that made the wheelchair have only just introduced pink as a frame colour, and Princess has the first one out of the factory (they've got orders for at least 12 more so far). We've been told they've officially named the colour after her. How cool is that!
Friday, 9 January 2009
Friday, 2 January 2009
There we were, driving to a friend's New Year's Eve party, our three kids in the back seat, Darling Hubby at the wheel, and me texting felicitous messages from my mobile phone. I commented how quiet it seemed - we were the only car on a usually quite busy road. Suddenly, Darling Hubby slows the car.
And here's the funny bit. A sleek, JET BLACK CAT had decided to step out on the road right in front of us, slowly amble all the way across with its head held high and tail in the air, and having safely made it all the way across our bit of road, disappeared into the night.
Darling Hubby and I looked at each other. Not known for his optimism, DH stated "That's our year ahead, then."
Now, I don't consider myself a superstitious person in general (though I have been known to knock on wood on many occasions).
But I've decided I'm going to accept this Black Cat Crossing Our Path as gesture of goodwill. It's good luck. We didn't run it over, so that's got to be good. It looked happy enough, not sinister or ill-willed, and I've seen some terribly-mooded cats in my time. And in fact, this cat seemed to be so deliberately flaunting its black-cattedness as it crossed our path, I think it was actually saying to us, "Notice me, because I am a portent of all things good to happen for you on this eve of 2009 - a propitious future is coming your way".
And anyway, the next morning we were swimming in my mother's pool when the children noticed four butterflies dancing around us in the bright morning light. Princess rightly pointed out that having butterflies dancing around you is such very good luck, and would make any bad luck caused by any black cat go away. And Chuckles shrewdly followed up this sentiment with "Butterflies eat black cats" (well, it was more "buffwies eat bwack cat", but you get my drift).
So I'm looking forward to 2009.
2008 was a very challenging year for us. And I'm sure 2009 will be no less challenging. But I'm ready to face it with a spring in my step. That black cat didn't appear for nothing.
Not that I'm superstitious.
And I wish you all a propitious new year too.