Archive | September, 2012


24 Sep

Eight! I can’t believe my big boy turns 8 today. Bit of Maths (not my strong point so hope I am right!) suggests that means he has been in my world for 1/5 of my life. How is it possible I lived without him, or my other beautiful boys, for so long?

When asked what he wanted for his birthday, all S requested was to have a party with his friends. We booked a party at an indoor play centre and invited half his class. He had the most sensational couple of hours playing and eating with his friends and it’s a testament to both how far his mobility has come as well as how great his friends are that I barely entered the actual play area itself. It’s a smaller play centre but still one with ladders,Tunnels, slides etc. He was able to navigate his way around with just the occasional push, pull, helping hand or simply words of encouragement from his friends. They fought over who sat next to him and who would play with him. He was utterly spoilt with gifts and I can absolutely confirm slept very well last night :).

Today is his actual birthday. He requested pancakes with maple syrup for breakfast. After I prepared those I headed out for a 10km run. It’s been months since I’ve run that far. I have a run event coming up to train for, but I think the long run for me on this day in particular was more my little way of respecting all that Satria achieves so quietly and without fuss. It’s often important to me that I remind myself just what a challenge simple activities are to him. Also to remind myself to not get impatient or lose my temper with him when things don’t go quite right for him and instead get out there, do something challenging for me and challenge myself to not complain, to not give up and to just get on with it.

(Almost on cue, just as I finished that paragraph S knocked his brother’s bowl of lunch off the table with a stray flaying arm. Not his fault. His control of his limbs is compromised by his athetoid CP and associated movement that comes along with it. But still, in a busy household it can be easy at times to forget this and get cross regardless. Not proud to admit it)

After the run, I had a coffee in a cafe for my own quiet little reflection (and treat!) I returned home to find the house in chaos and S and his brothers in arts And crafts heaven – birthday requests had been for Art supplies so that’s what he got – in abundance! Curse you Mister Maker and your super neat doodle drawers! We have glitter, googly eyes, stickers, texts etc etc all over the lounge room floor.

But also lots of artwork that all boys are proud of and they’ve played together all day almost without incident and are now all asleep together tucked into the double bunk bed (yes I did start the post earlier at lunch time, sorry to confuse you!)

I think that’s what this birthday really celebrates for me. Not just that my beautiful amazing boy is turning 8 but that he has 2 wonderful brothers who adore him and who loved so much sharing these special days with him. It’s the first birthday we’ve had since we’ve become a family of 5 that all the boys have shared the same excitement, the same anticipation and the mutual appreciation that comes with such an occasion – its super special for all of them. Not just the birthday boy.

And I am such a proud, happy and lucky mum to get to share days like this with all my boys.

Happy Birthday to you S. You are awesome xx

(and now to find the broom and start somehow sorting out this crafty chaos!)








19 Sep

When S grows up he wants to be a ‘writer who travels the world’. He has told me this is his dream for as long as I can remember.

So he was thrilled when he won his first ever award for writing this week.

He won an encouragement award for a book writing competition held at his school. He was awarded a certificate and a lovely Mem Fox book as a prize.

I will confess that I haven’t SEEN the book yet, let alone read it. It’s on display in his school library along with all the other prize winners. I was going to head in there to have a look at it today, but instead I have a tired, coughing boy on the couch so we are having a quiet day at home (well quiet all except for the 2 hours Social Skills program we all went along to with M this morning – no days are ever completely quiet in our world!).

S was so, so very proud to accept his award and I was proud of him. It’s such a small achievement in the bigger scheme of things but a beautiful slice of normality for me to be clapping proudly at the school assembly as S went up to collect his prize. And rightly named as it is indeed very encouraging for him to believe in his dream for the future. And for me to be able to share in that dream with him. Isn’t that all any parent hopes for?

It never completely goes away…

14 Sep

It’s less than 2 weeks until S’s 8th birthday (8! Impossible yet true!). These days I so rarely reflect on the details of his birth or if I do, it’s no longer with that dreadful sadness but rather with a sort of surreal detachment and a sense of wonder at how amazing it is that he has come so far from such an awful start to life.

Which is why it’s such a striking, terrible blow when something happens that suddenly take me back there to that room, shivering and terrified about what had happened to my precious little boy.

It used to happen a lot. I’d see a program on TV, I’d read something in a book or I’d be in one of those far too frequent positions where I was being asked directly to convey details to some specialist or another about what had happened during S’s birth.

I can fairly safely say, I cope with any of those situations pretty well these days – maybe the sheer repetition of those experiences prepares me, shields me and it has been so long that I have been struck with grief and what I suppose really is a kind of post traumatic stress response, that I guess I have felt safe from it ever happening. Or maybe it is just true that time does heal.

But then today, a friend gave birth at the same hospital, in the same family birth centre within that hospital and she posted photos on Facebook.

Don’t worry, her baby was fine, perfect and healthy. Gorgeous.

But I took one look at the photos and I suddenly found myself a blubbering mess. It wasn’t the beautiful baby and the happy family, but the room – the curtains, the couch, the posters on the wall. I couldn’t stop shaking and crying. And I had this pain and tightness right in the pit of my stomach. I felt such sadness and grief, old but yet somehow new because it’s been so long since I have felt this way.

I am sorry for blogging my sadness but I feel I have to in order to let it go – put it in writing so I know it’s just a moment in time. It will pass. It is part of the process.

And in a weird way it is a grief I never fully want to forget – after all, it is not the much worse sadness it could have been If he hadn’t made it through those first hairy, scary days of balancing between life and death.

But he is HERE. He is vibrant and funny and imaginative and resilient and strong and loving and loved and kind and caring and thoughtful and adventurous and cheeky and charming and affectionate and determined and beautiful in every way. He is perfect.

So I think I have to feel glad about what happened today. Maybe I just really needed to cry, to remember, to feel sad for a moment.

And now I can get back to the business of enjoying the wonder of having my gorgeous boy in my life and prepare to spend his 8th birthday when it arrives so soon focusing only on love and laughter and most of all gratitude that from such a beginning, we have so much joy and bliss to celebrate.

Access All areas?

7 Sep

Well we are definitely back home and back into business. Apart from the inevitable bills, the only mail waiting for me was disability service related and ditto for the few messages on the answering machine. And as well as the therapy sessions we’ve already had for M yesterday, much of my time since our return had been caught up with sorting out disability related issues – setting up a school meeting for S, school preparation holiday programs for M, chasing up new wheelchair (still waiting after 5 months gggrrr), sourcing new funding for Second Skin suit, changing school visit times for therapists, buying and trialling new Social Story app for M, trying to source funding for A to have additional child care day next term so he doesn’t have to tag along to all of M’s therapy sessions – etc, etc.

And the TV viewing that I’ve caught up on over the last few days? Big Brother? Home and Away? Nope. A Four Corners documentary about autism, a Sunday Night special about a young child with CP, an SBS Insight special about families relinquishing their severely disabled children to state care and on a more fun note, enjoying bits and pieces of the Paralympics.

So yeah, while as my blog name suggests, disability is the nothing but everything in my world – by which I mean it affects our lives every day but I choose to look beyond it as being just part of our “normal”, sometimes it really is “everything”.

Usually though, on holidays, it’s much much more of a nothing. No therapy, no equipment (other than the absolutely necessary) and as much as we can, we ignore the disability. Instead, it’s all about us enjoying time as a family.

But this trip was the first of our overseas travels where disability was just impossible to ignore, as much as we tried – and believe me, we did try.

When we were planning the trip, early on we decided NOT to take S’s walker. We have found in past trips he’s either too tired to walk far and the terrain for much of our time away is just not suitable for a walker anyway. And as much as it shouldn’t be a factor – the bulk of the walker just makes it difficult to travel with too.

It was a more difficult decision to not take his wheelchair either. S’s current wheelchair is not great. We’ve had to add bulky blocks to the footplates just so his feet can reach them, it’s a cheapie and bits fall off it all the time (was worried how it would survive the flights!) and again we questioned the terrain knowing there would often be times when S was in the chair that there would not be access to all areas so we’d end up having to carry the chair as well as him – and as I have touched on in previous posts, that’s exactly what kind of situation we occasionally found ourselves in. :(

So instead of the wheelchair we took a simple fold up umbrella stroller – just a cheapie that I found which happened to be slightly longer than others. S is quite short for his age (he wears size 4 trousers) and he only weighs about 17kg. This meant that we could get away with this option despite it not being the most ideal. But it meant we could easily fold up the lightweight pram and carry it under one arm with S under the other if we really got stuck. It also meant catching taxis and public transport was easier than having to find a way to transport the wheelchair too.

It all worked reasonably well and S was happy. But it was definitely a tight fit in the pram length wise, so this is not an option we will be able to take on future trips. He will have a better wheelchair by then or we may even look at purchasing a second hand special needs older child stroller just for our travels.

And whilst 17kgs is light for his age, it’s not light for any extended carrying. After his dad carried him up and back down the steep jungle path to the orangutan feeding in the jungle, he needed a few serious massages and I doubt he’ll be able to do that again on our next trip.

It makes me a little sad that S’s physical limitations are clearly going to become more of an issue on future trips but it also makes me even more determined for us to find ways for him to not miss out on any aspect of our travels that he wishes to be part of. I can see that much more forward planning will be necessary.

In addition to S’s physical limitations, this trip also greatly accentuated the challenges of travelling with a child on the autism spectrum too. M had many brilliant days where his behaviour was faultless and I am sure anyone would find it hard to believe he has ASD. But, and it’s a big but, on the bad days, things were really bad – exhausting and frustrating and a cause of stress and friction for us all.

We know that what M eats can directly affect his behaviour. And on the road it’s harder to ensure that he avoids food that trigger poor behaviour in him. His behaviour also deteriorates if he is in any way unwell or is overtired or too hot and/or cold. We are lucky that he isn’t an ASD child who requires the sameness of routine to keep him calm and happy but he does struggle with waiting in queues, traffic, in restaurants etc. So for all these reasons we would have days where there was a lot of screaming, tantrums, refusal to do certain things. We are lucky he is generally not violent in any way, but it can be exhausting resolving a situation so that M can calm down and explaining to him that we can’t jump a queue, make food appear sooner, fix the traffic jam etc doesn’t always make a difference. More screaming. More tantrums. And in places such as airports, shops, he sometimes just simply refused to move. So we would often have S and M in the strollers with one of us carrying A while pushing a stroller at the same time. Not ideal and pretty hard work.

As well as being stressful, it’s heartbreaking to watch M lose his cool and confidence. We know it’s not him. Our M is a beautiful boy who loves new experiences and adores travel but when things get too much for him he is just so distressed. It’s impossible to ignore and pretty much impossible to reason with him once he’s reached that point.

As I’ve said, fortunately we had more good days than bad. But oh how those bad days took it out of all of us!

Of course having a neurotypically demanding 2 year old on board just added to all our fun. He is a great traveller but very keen to have his own way too and equally as hard work as his big brothers when overtired or unwell.

So all in all, we can see that future trips will pose more challenges but that doesn’t mean we won’t be taking them. We’re just starting to prepare for them already ;).

Home sweet home!

5 Sep

Our last afternoon in KL required an activity that would suitably wear out the kids for our big overnight flight home but not be too far away from our hotel so we could make the most of the time we had left.

The initial plan to return to KLCC to go to the Petrosains Discovery Centre was thrown out when I found out they are closed on Mondays. A quick google search led us to the nearby Berjaya Times Square mall to check out their indoor theme park. There is a monorail station directly connected to the mall, but after our previous experience we decided to take a taxi instead.

The theme park covers a couple of levels at the top of the mall. The lower of the levels contains the high adrenalin rides for older kids and grown ups. We bypassed that and headed to the Fantasy Garden on level 7. The kids had a ball enjoying the wonderfully colourful rides including a train, a jeep ride, magic bus, swinging pirate ship, bumper cars and flying bees. I was super impressed with both M and S’s driving skills and A I had extra turns on the merry-go-round to account for the rides he was considered to short to try. There weren’t many kids around so there were no queues and we could readily flit from one ride to the next. We spent a really fun 2 hours here until S got a bit green from M spinning him around to much inside a spinning cup on the Merry-go-round.

The pay-once unlimited rides entrance ticket would have been amazing value if we had gone on rides too but I though a bit steep for adults to pay same price regardless of whether or not they go on any rides. Dad did suggest he was going to go on the roller coaster (which made me feel ill just watching!) but at the end claimed we had run of time much to the kids’ disappointment (and his relief I think hehe).

After a quick dinner we headed back to the hotel to pick up out bags and take a different taxi out to the airport.

The kids were all great on the overnight flight, mostly sleeping except for M waking with a blood nose and S needing the toilet. I didn’t sleep at all – have never ever been able to sleep more than a 5 minute catnap on a plane – one of the many reasons I hate flying!

We were super impressed with the service we received at the Melbourne Airport where we were met at the gate with a wheelchair and given priority access all the way through until the exit but equally unimpressed by the 2 very selfish women in line in front of us at immigration. At that stage, M was desperate for the toilet and A was crying too, yet when asked politely by the lovely lady who was assisting us if we could possibly go through first, they sniggered at each other and then ignored her request. Sure hope they get the same treatment if they are ever in a position of need!

We had left our car at a long term nearby car park for the trip and we had tears from all 3 boys in the car on the way home. M and S were crying because the wonderful holiday was over while A was crying because he was suitably unimpressed to be returned to the confines of his Australian car seat.

But once home we were all happy to see our home and garden – and so lovely to arrive home to such lovely sunshine and to see Spring had definitely arrived in our absence.

Thanks to teachers strike no school today so we are all having a rest day before preparing to get back into the swing of things tomorrow.

Thursdays = school for S, speech therapy, swimming lessons and OT for M with A in tow so yep, back to business tomorrow. Sigh!

Good thing we are already planning a little trip away for the school holidays just over 2 weeks away. :)






KL public transport – the ups and downs of the ups and downs

3 Sep

For an aspiring modern city, coming across such epic accessibility fails in Kuala Lumpur is disappointing and really hard work!

Our main motivation to come into KL (apart from breaking up the journey a bit) is to give M a chance to satisfy his train passion with a ride on the monorail and other trains in the city.

We even booked our hotel in central Bukit Bintang based largely on how close it was to the nearest monorail station. So the walk from hotel to station was easy (great footpaths by Asian standards and pedestrian crossings that were actually – mostly – observed. But that’s where the easy access ended.

There is no lift up to the platform. There is an escalator which helps a bit – if it’s working. It was the first of several escalators we encountered on the day which had an apologetic sign on it. Not working, waiting for spare parts. Great.

So a long walk up. Then more stairs at the top from ticket sale point to the platform. The ticket booth was unattended so we purchased tickets via machine, which is fine but a map detailing which stations would provide most accessible transfer point from monorail to separate line for our destination. (KLCC) would have been appreciated.

We made the (as it turns out terrible) decision that the KL central station would be sure to offer the best transfer – but nope. Wrong. Another broken escalator, long walk from monorail to train station and then yet another broken escalator. There may have been a lift there (must have been!) but there was no staff to ask and the few locals we tried had no idea.

From there things got a little easier, though the fact different train lines exit from different points adds another factor of confusion.

Once at KLCC we were exhausted and enjoyed a lovely long long in the large food court overlooking the water display – impressive as ever! We had planned to finally visit the Petrosains Discovery Centre but boys were all a bit tired from the walk so we decided to look around then head back to hotel for swim in the pool.

You would think our trip back would have been more successful – but not. I think the staff member we got advice about best route back to hotel thought we said – make it as difficult for us as you can please! Or perhaps he just had no idea what it means to need an accessible option. It was harder than our trip there. Sure we saw a couple of wheelchair lifts to get up/down stairs but no one with a key and our “easy” transfer involved taking an overpass over a busy road – again with no working escalator. By the time we got the the hotel I have never been more pleased to see a pool! A relaxing afternoon followed.

I shouldn’t make it all sound doom and gloom. We did have fun. The boys loved the trains, the views, the tokens used to enter and exit the stations and they enjoyed KLCC – loved the food, the lifts, the hustle and bustle of the big city.

This morning M demanded more monorail, so headed off on his own with dad while the rest of us chilled out at the hotel. We were happy to have a quiet morning before our busy afternoon/evening (flying home tonight!) but even if the other boys had really wanted to go again there’s just no way we could have.

I have searched online for accessible transport options for disabled folk in KL and over and over with the same option: taxis – but even they aren’t always willing or able to take on wheelchairs.

Pull up your socks KL! Being an international city means international standards of accessible transport options should be available. So pleased to see some steps in that direction but a long way to go. At the very very least, a simple map outlining which stations are truly accessible (and we did find a few) would be super handy.






Bali Safari and Marine Park

2 Sep

The Bali safari and marine park came so highly recommended from my many Bali connected friends that it was an easy choice as our one big outing for our week there.

It took us about an hour from our hotel to get there. We made sure to get there early as we knew it would get hot and we also wanted to be sure not to miss any of the special shows on offer.

The boys loved the safari bus that takes you from the front entrance to the park itself and the live traditional Indonesian music played as you get off the bus is a lovely touch.

The marine park is rather small – still in development apparently but it’s well presented and the kids enjoyed seeing some of the unusual fish on display. We stayed for the piranha feeding frenzy – they are actually quite menacing looking fish even before they start eating. They barely move when they swim and just seem to be looking out at you, sizing you up! I hope their lack of movement is natural and not related to how much room they have because the tank did seem rather full. Nonetheless, they didn’t stay still for long once the food arrived! It was astonishing to watch how ravenously and impressively they stripped away a whole chicken to the bare bones.

Next we moved on to the animal show. It was OK, especially watching the birds swoop in to eat, but I am never comfortable with performing orangutans and it seemed like such a poor experience after seeing them in the jungle in Sumatra.

Next we moved on to the elephant conservation show. Again, performing wild animals is not my cup of tea but I will readily admit to being blown away by this incredible show which tells the story of the relationship between man and Sumatran elephants. The show involved incredible action and movement – including an elephant rescuing a man from the water, an act which my boys have not stopped talking about and A has asked us to play out several times in the swimming pool since.

A is definitely our animal lover – especially elephants which seems fitting as I’ve mentioned before that he shares a birthdate with baby elephant Mali in the Melbourne zoo. So it was for him that again, despite me feeling a little uncomfortable about an elephant kept in a very small enclosed space, we paid a nominal fee (about $3 aud) to feed an elephant a bunch of carrots. I so hope that elephant is a happy one because my boys so so loved that opportunity of feeding him.

From there we took the safari bus around the safari track. There was an interesting rang if animals but some didn’t seem to have as much space to roam as you would hope – but that might just be how it seemed from the bus. Still was a great experience for the kids.

From there we had lunch at the Uma restaurant and we were impressed with the range and price of food there. We made it a quick lunch though because we wanted to catch the Drumming monkeys show – relax, not real monkeys! Just a very clever and fun interactive puppet show which the kids absolutely loved (it was a special event and not always there but can recommend it if you ever get the chance!).

And from there we hit the Water park. Seemed a bit of an odd mix to me to have a water play park in the middle of a Safari park, but not complaining at all as we were quite hot by that stage and the kids readily welcomed the chance to cool off and for younger kids it’s a really fun and well set up little water park – probably boring for teenagers but just perfect for our kids. And I was over the moon watching S climb up the two levels of stairs over and over on his own to go down the longer water slide – without even a blink of doubt or fear. Proud mumma moment! Not quite ad proud of how equally brave M was as he chose to climb back up the very same water slide nearly giving me heart failure as I watched from below! And A was super brave too. No sign of any life guards policing how the slides themselves were being used so it was on guard every minute for me and my husband – who had forgotten his bathers but was able to buy some there (quite nice ones actually!) for just $7. Towels are more expensive though so take your own.

From the water park we were exhausted and headed home with both A and M falling asleep on the way back. A highly recommended day out!

A couple of notes: you aren’t allowed to bring in food from outside. They were checking bags and taking any food to a storage area to be returned on departure. We were allowed to bring in our 2 big bottles of water. Wheelchair/pram access is excellent all around the park. However, they didn’t let us take our prams on the safari bus and didn’t explain that drop off was at a different point. Not too far away but too far to carry a heavy 7 year old! I ran back to the start point to collect the prams. The only other tricky access area is the terribly steep ( and wet and dangerous!) stairs down to the grotty change rooms/toilet in the water park. Free lockers are provided there though for safe storage of goods.

So a few down points, but all in all we were big fans. I just hope that their conservation message is one that gets taken home by many and that their actions speak louder than words. When we get home S has already asked if we can research the elephant conservation sites in Sumatra they talked about during the elephant show. You can actually watch the whole show online (google Bali safari park elephant show, a 21 minute video is one of the first to come up.

A few pics below – but none of ours from the water park as was far too busy (and wet!) having fun to take pics.






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