Thursday, 26 February 2009

All's well that ends...

I have previously alluded to the fact that Little Man wasn't an entirely happy camper when he started the new year at school. He's in a different class to most of his friends, he's suspicious of his teacher's motives and worst of all, suddenly everyone at his school knows his little sister and he's "just a nobody". Ouch. Life just is not fair.

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


We recently returned from a brief and very busy trip to Sydney, where we attended a therapy clinic for Princess (apologies to our family members there, we simply didn't have time to try for a catch-up!).

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


I have lots to post about, but just can't get away from the horror of the bushfires ravinging Victoria.

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

Only twelve more years to go!

Well it's been more than a week - a long and interesting and fairly exciting week - since school began.

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...

The excitement was palpable...

...and she wasn't let down. As we all arrived at our local school and began walking/wheeling up the path to her classroom, we were joined quite coincidentally by one of Princess's 'best friends' from her old kindy. Instant relaxation. It was just like old times! On entering her classroom, although busy, a lovely sense of excited calm pervaded. Princess had her 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...