Not lost, just on a different path.

Today was my birthday. Yay!

As my best friend recently arrived from London for a few months, I decided that we should spend the day together. Just the two of us.  I felt a bit bad deciding to ditch the family for my birthday, but then again, one of the few good things about having your birthday so close to Christmas is that you have recently spent a LOT of time with your family.

So my friend and I decided to head to the hills – the nearby Dandenong Ranges to go for  ‘a walk in the bush’ (less serious sounding than ‘bushwalking’, we decided).

We didn’t really know where we were going to walk to, but we  had decided on our starting point and had a fair amount of confidence we could get some good advice and pick up a map along the way.

The advice we got was vague, but enthusiastic, and the map was colourful, but greatly lacking in detail – like the names of tracks and an accurate scale.

Nevertheless, we set off confidently with two bottles of water and leaving a message with the lady who gave us our advice that if we weren’t back by 5pm, she should call the police.

We walked along a path towered by old gum trees to a beautiful waterfall, then down a steep, winding path next to the river before totally expectedly, taking a wrong turn and getting thoroughly and absolutely disorientated. But we didn’t worry. Really. There wasn’t so many different paths that we COULD take and we knew that the worst that would happen would be that we would walk a lot longer than we had anticipated. We knew we’d eventually come out on one of the main roads and walk back to the car from there.

And that’s what happened. Our plan of a casual 2 hour amble, turned into a hardcore 4 hour slog.

But it was brilliant. We hadn’t seen each other for 10 months and we had a lot to catch up on. We didn’t stop talking the whole way. We never got flustered or upset about where we were and we were exhilarated moreso than exhausted when we finally made it back to the car and headed off for a well earned (and very delicious) lunch and TWO cups of coffee (unheard of in an afternoon for me!).

It was such a lovely day, reminding me of both the importance of friends and also of getting away from it all and being my own person, not just a mother, for a while.

And it struck me in the car on the way home that our walk was a good analogy for life since  BC entered the world so dramatically just over 4 years ago. It’s been quite a journey along a path that I wasn’t expecting to be travelling down – a longer path with more steep gullies and slipperier surfaces. A path that I was ill prepared to travel down yet full of enthusiasm for. And yep, there have been times where I’ve not known which way to turn and have just opted for what seemed like the best (or least difficult!) track at the time. And weirdly, whilst there have been days when the path seemed too steep or too slippery it’s true too that there’s never been a time when I’ve felt fully, totally, impossibly lost. It’s just a different path, that’s all.

And now I am off to soak my another year old limbs in a hot bubbly bath (right after I finish off the last of my yumcious ‘Persian Love Cake’ birthday cake that BC helped me make this morning -he’s a particular fan of cracking open eggs.)

A science lesson

Our festivities didn’t finish with our Boxing Day family Christmas do. Yesterday we had a family christening.

It was a great day. As I said before, we’re a close family and I loved the chance to see them all again so soon.

BC had an absolute ball at the after party. It was held in a reception centre and there was lots of yummy food and music. He took to the dance floor in his walker and impressed everyone with his 360 deg turns and boogying skills. He even joined in with some traditional Greek linking hands dancing with me holding him with one hand and him holding one of my cousins hands with a free hand. He barely stopped laughing the whole time.

Best of all, were the balloons. The ceiling was filled with helium filled balloons with ribboned tails which were just within reach if you jumped.

BC had 4 balloons tied to his walker and we tied a few to the little Beans shirt, which he thought was hilarious.

Back home later though, the balloons caused some stress with the tired little boys. Firstly, one got away as we opened the car door. Then a little later in the evening a few of them lost their magical UP in the air powers and were just normal old boring balloons. This made BC rather upset. He insisted on me getting them back up in the air. And cried inconsolably when I couldn’t.

Then, he asked my help to tie one of the still airborne balloons to a plastic sandpit bucket he got from santa, which I did. Then there were tears, tantrums and anger. I couldn’t understand why. There weren’t any words. Dad had to be called in to interpret the situation.

And when he arrived, he laughed and laughed. He knew straight away what BC wanted. He knew that BC wanted the bucket to float up to the ceiling along with the balloon.

A first science lesson at the end of a long day…..

Perspective

Every Boxing Day, we have a celebration with my extended family. We rotate who hosts the event between my father and his three siblings – so every four years it returns to the same place.

This means that yesterday, we were back at my aunt and uncle’s house where we spent BC’s first Christmas – December 04.

Being there bought back a lot of memories. Memories of family members not quite sure whether or not they should be congratulating us or not. Family members who greeted me with hugs that lingered a little longer and who I occasionally caught looking at me with a curious kind of sadness. Family members unsure about whether or not they should ask to hold BC and who didn’t quite know what to say to these two new parents and their new little boy.

This is not a criticism at all. We are a close family and they had all followed BC’s journey until then. They knew that he nearly died. They knew that he had sustained a brain injury. They knew that it was really still far too soon to know what that meant for this little bundle of curly hair and little pink fingers. And for us all.

But those bittersweet memories are not what stands out most from that day for me.

Many people will recall that Boxing Day was the day of the terrible earthquake and tsunami that caused such havoc across Asia and even parts of Africa.

We saw the early news reports during the day that day, news flashes on the TV, which was switched on as always in the background so family members could check up on the scores of the first day of the Boxing Day cricket test.

We had more than a usual reason to be interested in this news.  My husband is from North Sumatra. That’s where we met. We had actually only returned to Australia a few months before (my husband arriving for the first time). We knew the area where the first earthquake struck. We’d been on holidays there. We’d swam in those beaches and eaten fried prawn cakes in the nearby warungs (cafes).

But during the day, we didn’t pay too much attention because the news reports were minimal. The true devastation of the event hadn’t yet been realised.

It was only later than evening, when we returned to the city and were watching the more detailed news reports that we learnt just how devastating it was.

And a panicked phone call to my in-laws confirmed that they had indeed felt the earthquake. My mother-in-law and sister-in-laws had been washing clothes in the river when the quake struck. Such was its force that they fled, leaving the washing to be washed downstream. Their village rumbled for what seemed like an age.

But then it stopped. They were far enough from the epicentre and far enough from the shore to be spared what came next – that enormous tsunami that took so many lives and caused so much destruction.

We watched the news over the next few days, numb. It was horrific. We heard stories from people we know. My brother-in-law had been working in one of the villages that disappeared. He’d only just arrived to visit his parents a few days earlier and been spared. We heard of families who lost all their children. Children who lost all their remaining family members. Babies swept from their mother’s arms while trying to escape from the torrents of water. Whole villages destroyed.  Sheer, utter devastation.

And so, this brought me back to where I was, watching TV, sitting in my safe little home in suburban Australia, nursing my gorgeous little 3 month old baby. Who was HERE. Who was ALIVE. Who was SAFE.

It brought everything back into perspective for me. It made me realise that whatever came, whatever challenges we faced, whatever ways his brain injury affected him, we were lucky.

We were lucky to be together as a family and to have him in our arms.

Four years on, yesterday, BC played happily with his cousins. He sat with them on the table as they tore apart the traditional gingerbread house and giggled and shrieked along with them too as the walls fell in and snatched at their favourite lollies.

He pulled Christmas crackers and laughed in glee as the cracked, collected all the trinkets inside and insisted on wearing the paper crown from inside the cracker on his head even though it was about 10 sizes too big.

He helped unwrap presents, marvelled at his own gifts, walked around everywhere in his walker with a gorgeous little wind powered mobile attached to the back that his Nana had brought him.

None of the family members were awkward about what to say to him, what to do with him, how to play with him. He is just BC. A part of a family,  just another one of the kids, having a ball.

We had a beautiful Christmas  and we are truly blessed.

I hope you and your families also had a very safe and happy Christmas too.  xo

Christmas Eve musings….

We’ve had such a crazy whirlwind of Christmas parties over the past few weeks that I can scarcely believe that Christmas Day still hasn’t actually passed.

The parties have all been very different, but what’s been similar is that they have all been  great places to celebrate and spend time with friends, family and other kind, wonderful people who have been a part of our lives over the past year.

I think BC’s favourite new phrase pretty much sums up how he feels about all these parties, and that is ‘I can’t wait’.

The only problem I fear is that his other favourite new utterance ‘What are we doing tomorrow’ is going to lose it’s shine greatly when he realises all too soon that the answer won’t be ‘going to a party!’ as it seems to have been pretty much every day lately.

Only one of the parties ended in tears. It was BC’s child care centre break up party held an indoor play centre. BC had so much fun playing with all his friends that he didn’t even want to stop playing to eat any of the yummy party food (not even a cheezel!). But then, when the party was finished, all too soon, he didn’t want the fun to stop.

There were tears, cries of ‘more, more’ and even showing him that the Jumping Castle had been deflated and most of the others had gone still didn’t seem to convince him that the party was in fact, definitely, over.

Even through the tears (and the way those tears curiously distorted his Batman facepainted visage to look more like Heath Ledger’s Joker!), he still had smiles and hugs for all his little child care friends who all made a point of coming to say good-bye to him. They’re a great group of kids.

Another poignant moment was at BC’s therapeutic horseback riding breakup. All the riders were given a card with individual photos of them on their horse. They were all called to the front to collect their cards in a kind of reward ceremon – clapping, cheering etc. The Little Bean was the best of all the cheerers (he loves joining in on any clapping and whooping!) and BC was amazing with his walker – he sped up to collect his card with his smile beaming from ear to ear. And the photo on the card was gorgeous. He’s so loved his riding!

Another party saw him catch up with some friends at one of their homes. Playing on the jumping castle and trampolines were highlights, as was a visit by Santa.  Although the Little Bean is still definitely not convinced by the man with the beard, it was a special day with special friends.

And yesterday it was the first time ever all the cousins (including my sisters and their children) were all together – one of my sisters lives far away and hasn’t been in town since the Little Bean was born.

Time with cousins is ALWAYS special. There’s something about that family bond that transcends all else for a little kid.

Both BC and the Little Bean had a ball.

And still, there’s tomorrow! A day with family again, and then another on Boxing Day.

And then, a day to rest. But I am not sure if BC will be willing to accept the slowed down pace, the end of the run of parties.

Lucky for him that my birthday falls between Christmas and New Years, so we can have another party before too long .

Merry Christmas Everyone!!!!

Only one

Wrong Title

I love it when I see an article about cerebral palsy in the media. Even more so when it’s an article about kids with CP and how great they are doing, against the odds. AND even MORE so when it’s kids who I know.
I picked up a copy of ‘Mother Matters’ – a free mag – at BC’s child care centre the other day and was pleased to see an article about two of the kids with attend the same early intervention centre as BC. The article was about the difficulties their parents had coming to terms with their diagnoses, but more so about how well their children were doing. I love that it included how one of them used his communication device to describe a football team as a ‘bunch of sooky lalas’.
These kids have spirit! These kids are doing great! Their parents are doing great too.
SO, why am I writing this post?
It’s all about the title.
The title of the article was ‘guilty diagnosis’. It’s a crap title. It doesn’t reflect what the article is about. It reeks of pity and gloom. It says – feel sorry for us. I hate it.
Why can’t the title be uplifting? Why can’t the title reflect the positivity the parents express in the article and the spunk the children are showing for doing so well against the odds?
I have an alternative title. I think it should be called
“We’re no sooky la-las”.
And yes, I feel another letter on its way.

Never funny words.

When I was a kid, we used to sing along to the Police song ‘Every Little Thing She Does is Magic’ thinking we were hysterically funny by singing ‘Every little thing she does is spastic’. I cringe now. We were just being funny, but even then, we knew that what we were doing was laughing about people who were ‘spastic’ – which we believed to mean anyone who had a physical or intellectual disability.

This word is still used in colloquial language a lot in Australia. In fact, a good friend has just been to see ‘Billy Elliot’ the musical and was shocked and upset that during the show, one of the dance teachers makes fun of a student by saying ‘I don’t care if your mum has cerebral palsy’ and then a short time later scolds a student by saying ‘Stop dancing like a spastic’ – after which, all the audience burst into laughter.

My friend didn’t. She has two daughters with cerebral palsy. Two daughters who would love to dance. Two daughters who SHOULD be able to have the chance to dance without fear of being laughed at or mocked. Imagine if they were a little older and had been in the audience? Whatever way you look at it, it’s just not funny.

A little while ago, there was quite a controversy surrounding the Hollywood film ‘Tropic Thunder’ which was a spoof film about film-makers and actors, making a big budget war movie. One of the storylines involves one of the character’s previous movie titled “Simple Jack” and it’s byline “Once upon a time, there was a retard”. There was a huge backlash in the US from disability advocacy groups, which did see the makers of the film making some concessions.

I imagine, as Patricia Bauer so eloquently puts it, that the defence of the film is that it’s satire. She writes  “Stiller isn’t laughing at people with intellectual disabilities, I can imagine his publicist saying. He’s laughing at the way Hollywood portrays them.”

I haven’t seen the film, but from the trailers and the plot summaries I have read, I seriously doubt it’s just clever satire. It’s just crass, easy joke making at the expense of people with a cognitive impairment. From what I’ve read, the continued use of the word in the film through the additional slogan ‘never go full retard’ reinforces that to me. There’s nothing funny there either.

I am not totally opposed to clever satire on disability issues (or any issues!). I am a huge fan of Australian comedian Chris Lilley and his brilliance in Summer Heights High, in which the revolting self-serving Mr G showed such disdain for the involvement of the ‘Special Needs’ kids in his musical production, that he tried to have the Special Needs unit shut down by depositing his own excrement on their classroom floor in the hope one of them would get blamed for it. It’s hideous and nasty, but I agree with this UK newspaper ‘the Guardian’ reviewer who writes “You could accuse the show of simply mocking its disabled characters, but I’d argue that it employed them to highlight the monstrousness of other characters (mostly Mr G)”. I doubt anyone would walk away from that show and feel compelled towards any discrimination towards people with a disability. In fact, in the closing episode of the show, I really felt the young boy with Down Syndrome was celebrated as the star of the performance.

A few months back, I was listening to my favourite morning radio show. It’s hosted by a couple of comedians. They tell jokes and play fun pop music. It’s a much more relaxing start to the day than listening to news radio as I used to. This program has a regular ‘Letters’ segment. One of the presenters often puts on funny voices when reading the letters. That morning, she chose to use a voice her co-host described as that of  a ‘simple person”. To my ears, it was a voice mocking someone who was deaf or otherwise disabled so they could not speak clearly. It was kind of offensive to begin with, but I could live with that. BUT then after she’d finished, her co-host joked that she was ‘a retard’. And everyone in the studio laughed along with him.

I was sitting over my cornflakes and juice with my two little boys and I really wanted to cry. In fact, I did shed a couple of tears. It just made me incredibly, profoundly sad that this very popular presenter on a popular radio station with a young target audience was making use of such an offensive word for a quick laugh.

It bothered me enough that I wrote them an email complaining. I haven’t heard back yet, and I am guessing I probably won’t. I also sent them the link to this video, which to me, sums up all the nasty, negative connotations that there are around the use of this word.

I think the fact that there are now people making videos like that and creating websites like this give hope that hateful and hurtful language might not always be part of our accepted language. There’s also the encouraging fact that last year, 2 video games were removed from the shelves in the UK after complaints about the use of the word ‘spastic’.

When there’s now research to show that the saying ‘Sticks and Stones May break my bones, but names will never hurt me’ is in fact, not true at all, I hope as a society we’ll be more careful about the way we use words.

I’ve stopped listening to my radio show. I might go back to it if they ever reply to my email and apologise. AND I am definitely boycotting Billy Elliot until I hear they’ve made a change to the script. I hope they can find a truly humourous joke to use instead of depending on cheap gags that will offend, hurt and worst of all further perpetuate the idea that it’s OK to make fun of people with disabilities.

These words are just not funny. EVER.

Underestimated….

Have you ever totally embarrassed yourself by underestimating your child’s ability in front of others? That was (oooppps!) me today, but I am very happy to admit it.

We were at (another) Christmas party – for my husband’s work. It’s a big deal – rides, presents, live performances, full Christmas lunch.

It was a fun day.

It was the first time BC agreed to have his face painted. He really wanted to be a pirate (and insisted on a blue eye patch). It took quite an effort to get him to look at the camera and take his eyes off himself in the mirror that the girl handed him when she was done. He loved his new look.

It was the first time he wanted to sit on Santa’s knee too. He’s really got the hang of the idea that this guy is going to give him a present. He loved his present too (a toy car that tows a toy quadbike). Bean, on the other hand was TERRIFIED and very unconvinced that the man in the big red suit was one of the good guys

And it was the first time he really, really, really wanted to go on a ride. The ride was a merry go round sort of ride with cars. I was fine with him going on the ride, but worried about his balance, so sat on the ride with him. Only to be told by the guy operating the ride that it wasn’t possible for me to ride along. It couldn’t take the extra weight.

I told the operator my son had a disability and needed my help. I told him he couldn’t balance well enough to stay on the ride himself. I told him he might freak out and possibly fall off. He told me (quite politely!) that all that didn’t change the fact that I was too heavy for the ride.

My husband told me to chill out and see what happens (he’d watched the ride already and seen it was pretty slow).

So, I backed off. And nervously watched from the sidelines. Nervous for a minute. Then elated as BC proved me wrong on every point. He balanced perfectly, laughed his head off and didn’t look even close to needing (or wanting!) my assistance.

So yeah, I was embarrassed, but happily so. And now altering my expectations. I hope not to underestimate him again!

A Christmas Party…

We had the break up Christmas Party for BC’s early intervention centre CPEC today. It was a lovely day, complete with visit from Santa, a police horse (who poked his head in the window to watch all the kids getting presents from Santa, much to their delight!) and a baby animal petting zoo.

BC was happy to hold a rabbit and a guinea pig but wasn’t very impressed by the pig trying to nuzzle up to him.

It was a special time to catch up with some of the other families we’ve got to know well over the year, but it was also a little sad as our group sessions are going to be changing a little next year and we won’t get to hang out with some of the same kids and parents. AND we’re going to have a change of therapists. VERY sadly for us, that means a different speech therapist. We ADORE our speech therapist and I am really saddened that she’s being moved to work with another group. Her replacement will have VERY BIG shoes to fill .

We’ve always known how lucky we are to attend such a fabulous place for therapy, but days like today really bring it home to me just how integral CPEC is to our life these days.

But ya know, we’re also really, really, really looking forward to our few months off. When we won’t have to rush out the door at 9am, when I don’t have to scramble around to find someone to watch over Little Bean and where BC and Little Bean can have lazy Mondays lolling around the house….

It’s our ‘normal’ family time – and I can’t wait!

A rumble in my tummy.

I know my kids watch too much TV.

I am not proud of it, but I am resigned to it.  Sigh!

I do however monitor closely what they watch.

BC’s favourite TV show is  “Bananas in Pyjamas” and his favourite character on it is ‘Rat-in-a-hat’.

This morning, BC was hungry. Instead of telling me simply that he was hungry (or, what he does most often, use the Makaton sign for ‘eat’),  he told me something else. He said (quite clearly, whilst also rubbing his tummy) I have a rumble in my tummy” .

Go Bananas is all I can say .