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Dear Blogosphere wish fairies…

7 May

Dear wish fairies,

Thank you very much for my 10 hour uninterrupted sleep last night, as requested in my blog post yesterday. I really appreciate your immediate action on this issue.

Seeing as you seem so willing and able to help me out, I just have a few other requests.

I have this gorgeous little4 year old boy who can’t walk independently yet. It would be great if you could just help him out a little and give him the strength, balance and coordination to take off on his own.

Also, he finds talking quite tricky. If you could help him out with his oral-motor control and give him the power of easy speech, then that would be great. Taking care of his saliva control would also be appreciated.

In fact, I know quite a few beautiful children who could do with similar help. If you’re not too busy, a cure for cerebral palsy would be fantastic.

Oh, and finally, and sorry to seem a little greedy, but I have about 5 kgs of weight, mostly around my middle that I just can’t seem to budge. If I could wake up tomorrow and find that gone, then that would be great too.

Yours very gratefully,

Dianne

Football

15 Apr

Football Season has started here. Torn hamstrings and two-week suspensions have taken over the news bulletins. Sigh.

Time to confess that I have never much been a football fan – not of the round ball, and despite living in a football mad city, not even Aussie Rules. I just don’t like watching blokes bowl each other over and I really don’t like the blokesy nature of football clubs. My LEAST favourite program on TV is ‘The Footy Show’. Puke.

I have also not much been a fan of footballers. I have long had the general feeling that they are overpaid,  arrogant and not particularly good role models.

However, in recent times, I’ve seen a different side. There have been AFL footballers at the Longest Cake event both years we’ve attended. This year we met a player from my aunt’s favourite team so we could get his autograph for her. He was polite and friendly and had a good little chat with BC.

And following the recent bushfires here and then at the annual ‘Good Friday Appeal’ to raise money for our city children’s hospital, there were lots of moving shots of kids meeting their football heroes. Kind of got me thinking. Maybe I’ve been a little unfair.

And then, just today, I came across this lovely video featuring English footballer Phil Neville talking about his daughter who has cerebral palsy.  I found it really moving.

In light of all this evidence to the contrary of my long held opinions, AND as a mother of boys and wife to a soccer mad husband, I have finally decided I better get used to football being around so I have even picked a team in the AFL to support this year (go the Bulldogs!).

I chose the team for 2 reasons. Firstly because the team nearly went under about ten years ago and was saved by the working class community around it who fought tooth and nail to keep their club alive. I like that the team has such spirit behind it.

And then because I read this article about one of their player’s last year who is step-father to a little girl with CP.  He seems like a good bloke. Yes. Another one. And yes, I am starting to realise I’ve been very unfair to the Footballer, falling into the trap of accepting a stereotype. Not any more. I’m giving the game and the footballers another go.

BC has decided to join me. We don’t really understand the rules, but we watched the game together on TV on the weekend. We learnt a few of the players names and BC decided he liked the colourful player number 21.  I googled him and his name is Jason Akermanis. And he’s fluent in Auslan so he can communicate with his deaf inlaws. Yep. Stereotype is out the window now. For sure.

I still had to wince at the roughness of the game but I actually enjoyed it and I think BC did too. Especially because they won ;-).

You never know, we might even go along and watch a game later in the season. Although that will probably have to wait until next year. I think  I have to take this just one step at a time…

Happy Birthday Little Bean!!

25 Mar

Today, my beautiful little Bean turned 2.

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

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

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

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

little-beans-birthday

Happy Birthday my gorgeous boy!!!!

Brag-a-bit Tuesday

17 Feb

I am generally quick to post about things not going right, but not so good when there’s something good to share, so here’s a few things I am very proud of BOTH my boys for achieving lately:

BC:

Is no longer wearing ANY nappies. YEP, not even a night-time nappy!! When the weather hit 44c recently and not much cooler at nights, I just decided it was too hot for nappies AND can’t believe that we’ve had not one single accident since. Hoorah!!!

Is taking 6-7 almost controlled steps regularly and even though he’s still a long, long way from being an independently walking boy, he tries to maneouvre his way around by walking – holding on to things (walls, furniture, a hand, his walker, a trolley, toy lawnmower, his brother’s head etc) instead of  immediately opting for crawling.

Is talking all the time. His speech still needs an awful lot of work, but he’s developing a definite spoken vocabulary and a will to speak with a wide range of people. On the down side, he’s learnt the art of complaining – apparently his kinder bag is ‘very very very heavy’, his dinner last night was ‘very very very yukky’ and his little brother was ‘very very very very mean’ to him…. not that I am complaining about his complaining…

And my lovely little Bean:

Is FINALLY saying a few words. Still not linking any two words together, but he’s got a growing vocabulary in both English AND Indonesian letting us know what he wants which is welcome relief from his previous strategy of just screaming while I thrust all possible choices in front him and just MAYBE guessed right every now and then ;-).

Is a dancing star. He knows all the movies to most of the Wiggles songs and when we went to see live music in our local park on Sunday evening got claps and cheers as he boogied his way up the front to some funky jazz beats. I really must record some of his moves and post them. He’s very groovy ;-).

Is going to turn 2 next month. I don’t know where that time has gone, but I can’t wait to celebrate turning 2 with him. He doesn’t always get the fairest deal and I am looking forward to us having a very very special day just for him.

A rumble in my tummy.

5 Dec

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 ;-).

Seven steps!

18 Nov

That’s how many steps BC took on his own in the living room this morning! We’ve been working very hard at a ‘one step and stop’ technique to allow him to regain his balance after each step instead of propelling forward into what would be better described as ‘falling with style’ than walking.

His steps this morning were very wonky, but every time he got very close to losing his balance, he was able to regain it and continue. I think he could have gone further, but got the giggles because I was so excited ;-). He’s a long way from independent walking, but every step is still like a mini miracle to me – yay to you BC!!

More about the Second Skin.

30 May

We’ve had BCs second skin for about a month now now. And we are starting to learn a bit more about how it works. So I thought I would share.

The second skin is described by the folks who make it as a body splint. I think it makes clearer sense to call it a supportive body suit. It has boning in it to help keep his body straight and the suit supports him while he does a wide range of activities because it allows him to have better balance and body control.

It’s recommended he wears it 6 hours a day, for 5 days a week (weekends off!). So far, we’re probably averaging about 4 -5 hours a day. He has only once requested that he didn’t want to put it on in the morning, but if he has a daytime nap (which he does once or twice a week these days) he usually doesn’t want to wear it again once he wakes up. I’ve decided not to force the issue at all. I think if he wants to wear it most of the time, that’s good enough for me.

What we LIKE about the suit is that immediately I can see his posture has improved – especially when he is standing (eg at a table doing an activity). He also looks fabulous wearing it when he is sitting on the horse at his riding sessions. His back is so straight and his body so tall. I am sure this not only helps with his strength and balance but also his confidence. I am also noticing a definite improvement in his endurance when he walks in his kaye walker. These days, he can walk a lot longer and further – which I guess makes a lot of sense because he’s getting that extra bit of assistance keeping his body ‘together’ – not so many things to concentrate on at once!

What we DON’T LIKE about the suit (at the moment) is the zips at the legs. I will confess now that for the most part, he has these side zips undone (I will try to post a pic later today so show what I mean). He finds it difficult to move around with the zips done up. They are not designed to always be zipped up anyway – we should be zipping and unzipping for different activities, but in reality, I only do the zips up when we are doing standing activitites together at the table (painting/playdough etc) because otherwise he is constantly demanding my attention because he doesn’t ‘feel’ as though he can move freely. I understand that this is because the suit promotes ‘correct’ movement so he needs to relearn a little. I’ve just opted to take it slowly with this too ;-).

More on the zips – there are LOTS of zips on the suit. 1 for each arm, one down the front, one at each side of the groin, one at each side of the leg and one at the back for toileting. That makes 8 in total and the suit is VERY snug when it’s on and the last few zips are often very tight to get done up. We are getting faster at it, but we do have to allow for a few extra minutes of getting dressed time and I’ve taken to putting it on him in front of the TV so he’s distracted if I am having trouble with a zip.

The suit is supposed to last 18 months and they have given us two inserts which can be attached to the suit if he grows too much within that time. I am no seamstress, but I can tell by looking at it that the stitching is of top quality and it’s designed so that it’s virtually impossible to accidentally zip up bits of skin when you are putting it on (thankfully!).

I was also worried because BC has eczema but the material is fantastic and he’s not had any irritation so far. The same mob also make suits for burn victims (I believe using the same material) so I’m guessing that skin comfort was one of their very early priorities.

One lovely thing about the suits, is that you get to ‘design’ your own. They have several different colours to choose from and they have a whole book full of patterns/images to choose from. Naturally, BC chose a train, but I’ve since seen a gorgeous flowery one on a lovely little girl and another friend with a space design. It’s nice for kids to have this ‘ownership’ of their suits in designing them and it also makes it look just that little less like a therapeutic device which I think is great.

We were happy with our appointments and their follow up and I think I am right in seeing we will now have 3-6 month appointments to check how it is all going. My only wish was that we had a little more time with a Second Skin “expert” pyhsio or OT these sessions to get a few more ideas about the best way to maximise the suit as I felt a little lost in those first few weeks about what we were/weren’t supposed to do – but I do feel more confident now and maybe these appointments are something that will happen in time.

Lastly, for anyone whose interested in the details, I’ll quote from the material given to us by the Second Skin folk about what goals they expect us to achieve with it:

*Improve postural stability and symmetry at pelvis, trunk and shoulder girdle

*Reduce impact of increased muscle tone on posture and movement

*Increase sensory awareness of body posture and movement

*Assist in developing dynamic sitting skills with concurrent arm used in play, self-care and desk top tasks

*Develop greater dynamic standing balance and endurance with concurrent arm use.

*Improve general mobility skills – balance, stability, confidence and safety

*The arm components can be worn separately to, or together with this body splint. They can be used for play activity time, desk top activities, access to technology and for communication devices, meal times etc.

And here’s their website (not the greatest one in my opinion but it does have some good info and pics):

http://www.secondskin.com.au/

I will keep you posted about how we continue to meet the aims and whether we feel like we’re getting the money’s worth for our kind beneficiaries who funded the suit (Thanks again to them as we could never have afforded it on our own!)!

:-)

The right thing to say

22 May

I never know the right thing to say in an awkward situation, or when someone is upset, has had some bad news or is feeling low. I always want to say something, because I really would like to help in some way. But it’s hard to get it just right.

I remember after BC was born. Lots of people tried to say the right thing while he was in hospital, clinging on to life and desperately ill. A lot of people expressed sympathy. I know they meant well, and I was grateful that they were thinking of us, but I didn’t want sympathy. My baby was not dead and he was not going to die. I wanted positive, affirming messages.

I mention this now, because I have been a bit low lately (hence no posts) I have been feeling a little overwhelmed and lacking motivation and energy. I don’t really know why. It might be because I am still upset about the visa not being granted, it might be because the season is changing and it’s getting cold. It might be because it’s the middle of the year and I’m tired. Or it might be because I’m going to get my period for the first time in nearly 2 years. Who knows. What I do know though, is that I’ve told several people and just one of them found the ‘right thing to say’.

I told her that I was feeling a little overwhelmed by everything I need to do for BC and that I was feeling a little sad about how slow progress was with his speech. She responded by saying: “However long it takes BC, he’s an amazing little man. He just looks like he’s here to spread happiness in the world!”

She has never met BC. In fact, I have never met her. She’s a friend I’ve met through an online group totally unrelated to disability issues. I don’t know why her comment really hit the button, but gee, at the moment I read her email, it was just the perfect thing I needed to hear. And I am starting to feel better already.

I promise more regular posts.

My little lamb

19 Apr

BC’s hair grows very quickly and it’s thick (that’s the Indonesian in him). But he also gets eczema on his scalp.

And so every 6 weeks or so, I get out the trusty clippers and lop off his locks.

The first time we cut his hair I was really sad because when his hair is long he has lovely kinky curls. But we didn’t have much choice. The only way we could get the itching to stop was to lather his scalp in the most wonderful product on the planet ‘Dermeze’ -an ultra moisturiser designed by the Royal Children’s Hospital. And with long hair, or with pretty much any hair it just gets too messy and too hard to apply.

So we shear him.

I thought he’d hate getting his hair cut with the clippers. The clippers are loud and I thought the feel of it would irritate him. But he LOVES it.

Today was shearing day.

I went to the garage to fetch the clippers and unravel the extension lead we use. When I returned a few minutes later I couldn’t believe what I saw. There was BC, sitting outside on our back verandah, in his little chair, waiting for me, with a big grin on his face.

This might not sound unbelievable to you, but for me it was staggering and wonderful.

Here’s why.

This means that in the 5 or so minutes that I was in the garage, he opened the back sliding door, dragged his little chair from the kitchen out onto the verandah and then climbed himself into the chair and into a perfect sitting position, with his bottom against the back of the chair, his feet out in front and no sign of a slouch.

Still not impressed?

This is a boy who can’t walk independently, can only stand on his own for a few seconds and who really takes his time to move about. So this was unprecedented, amazing, brilliant.

My little lamb is now shorn, slathered up with Dermeze and sleeping peacefully. And I am one proud old mummy sheep who will now stop gushing – or should I say bleating on ;-).

The tipping of the scales

16 Apr

I have two boys. One is 3 and a half, and the other turned 1 two weeks ago.

And now, one of my boys has learnt to walk independently. This is great. It’s a wonderful milestone to have achieved. I am thrilled, excited and proud.

But yet.

It also makes me a little sad.

My walking boy is 1. He has been trying for weeks to move off on his own, away from the furniture and his little trolley full of blocks. So yes, he’s worked hard to figure it out and build up those little leg muscles and his confidence. And well done!

BUT then there’s his big brother. He is hard working, enthusiastic and energetic. He embraces physical activity and relishes any chance that he can get to help get his body doing what he wants it to do.

But his body just won’t – yet.

And me, the mum who like any mum just wants the very best for her children just thinks it’s not fair.

It’s not fair that the scales have now tipped.

They’ve only tipped a little. There’s still lots and lots of things that the big brother can do that his little brother can’t. And we will of course continue to celebrate each of their own unique milestones and achievements. And I know that how long it takes to do something isn’t really that important – nor is it the be all and end all if some achievements are never made – but now the scales have tipped I’m learning of a new challenge I need to face as a mother of a child with a disability – one which I’m not quite sure I can put into words.

Is it because I am now waiting for the big brother to ask me why he can’t do things that his little brother can?

Is it because I now can see how easy it is for a ‘normal’ child to achieve goals – does that make me frustrated that the big brother has to work so hard to and we have to put so many hours, money and effort into therapy?

Is it because I am frustrated that any sadness should be twinged with the joy I feel for my baby boy’s achievements?

Or is it because I know that I just can’t, shouldn’t, musn’t make comparisons between the two of them but that I don’t know how to not?

Whatever the case, we’ll muddle through. And as always, look at the bright side. At least the big brother won’t have to fight with his little brother any more for rights to his Kaye Walker.

And as soon as I can figure out how to do it, I will just throw the scales away. And get back to just unreservedly enjoying both my wonderful boys ;-).

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