Archive | May, 2008

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!)!

:-)

Escaping to another country for a few minutes..

26 May

This is totally unrelated to anything, other than my current wanderlust (I’ve been looking through too many old photo albums).

But I had to share this website, which I am loving:

http://www.panoramas.dk/

So far this morning, I have been ‘visiting’ St Peter’s Cathedral, Carnival in Rio and the Damascus Mosque. Some of the pics even have atmospheric music…

Armchair travelling at it’s best!!

Oh, and because I am hopelessly always looking for ‘therapy’ potential in everything I do, BC had good fun playing with the mouse and moving the photo around….

Right, gotta go. I am off to Piazza San Marco (might have a latte while I am there…..)

Sunny Sunday #1

25 May

I have ‘borrowed’ this idea from another blog I admire (Thanks Following Elias ).

Seeing as I’ve been feeling a bit grumpy, I’d like to focus each Sunday on the things that are bringing some sunshine into my life.

So today.

I got to sleep in until 7am. This was great for two reasons. Firstly, the boys have been waking at 5am every morning for most of the week. Too early for me. And secondly, we’re having record low temp mornings. Too cold to get up too early! So thank you boys!!!

I swam 1.25 kms today. It was great. I am aiming to get the pool 3 times a week but it doesn’t always work out that way. Today’s swim was pure bliss.

I am finally NOT waking up with a sore back every morning. Thank-you to my chiropractor and very expensive new mattress (more on that later!).

BC is mastering the art of climbing. He LOVES those rope ladder walls they have in playgrounds and is surprisingly good at them. I will post some pics soon.

Bean has learnt to kiss on command. So of course I have been requesting them often ;-). They are a bit slobbery, but still definitely worthwhile.

Rice milk was on sale this week! I bought 20 cartons. I kid you not.

There is no washing pile in the laundry and all washed clothes have been put away (a fleeting moment of domestic control).

And because I refuse to end on the note of housework, I will add one more thing – I read Stepford Wives this week and it really made me smile….

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.

The letter they shouldn’t have sent

10 May

Having a child with a disability means many things in day to day life. As my blog title suggests it’s nothing but everything. It’s nothing because we’re just so used to it. It’s the way it’s always been since BC arrived in our lives. Sometimes I forget that what we do is different to what goes on in other families.

But when I’m reminded of just how challenging things are for us sometimes, the heaviness of the everything wears me down.

Which is why it was so great for us last year to have my sister-in-law come out from Indonesia to help us. Twenty-one, full of energy and enthusiasm, older sister to 8 younger siblings, the perfect helper and houseguest. Everything amazed her. The autumn leaves, hot running water, trash and treasure markets, the beach. AND the boys adored her. She became Bean’s second mum while we attended BC’s early intervention. She became BC’s partner in crime eating ice-cream and learning English from the Bananas in Pyjamas.

She stayed 6 months and we all cried when she left.

So we decided to bring her back. For 12 months this time. We don’t have much family around and we knew it would be great for us all to have here again.

We never thought the government would reject the application. We’d thought they might ask for more information, they might tell us she could only come for 6 months, they might make us pay a bond to ensure that she left when her visa expired.

But they did none of those things. Instead, they just sent us a letter saying the visa was refused. NOT because they didn’t think we need help. In fact, the letter accepts that we DO need help. But because they don’t believe that she’ll leave or that she won’t try to work while she’s here.

I can’t tell you how cross I am. Or how mean spirited I think this visa refusal was. How unfair I think it is that a family in need can’t invite a family member to come and visit them, help them when they really need it.

They shouldn’t have sent the letter. If there were doubts, they should have approached us first and given us a chance to present a stronger case. They should have shown compassion and common sense.

But instead, we’re faced now with the option to appeal – for a $1400 fee – or to look at a different visa category. And face long paperwork gathering, lengthy delays and possible refusal again.

I’m off to see my local MP on Monday. I’ve never done that before and I have no idea whether she can, or would do anything, but at least it will give me a chance to express my dissatisfaction with the government and their meanness in this case.

And we’ll have to break the news to my sister-in-law that she’s not allowed to come and spend time with her brother and her nephews. I’m only glad I’d not told BC about the chance of her return.

The nothingbuteverything is weighing very heavily tonight….

Going Straight to the Pool Room…

9 May

OK, so perhaps you need to be Australian to recognise the title. It’s a line from a great Australian film ‘The Castle’ , most recently reprised by pint sized Bindi Irwin when she received a TV Award (Logie) last week.

It refers to what you do with prized possessions, tokens of achievement.

We don’t actually have a pool room. But that’s not important.

What’s important is that BC came home from child care today with his first ever ‘award’. It was a certificate for being the ‘Helper’ in the Kinder room today. This is a role that rotates around the different kids in the room and basically means they get to choose songs, games, books etc as well as helping to set things up. It’s the first time BC has been the ‘helper’ and when they told me it was his turn in the morning when I dropped him off, I was worried about how he’d go with the attention and the responsibility.

Turns out he THRIVED. He loved it. He used his communication book and his growing voice and made lots of active decisions and was apparently a great helper setting up activities.

And they gave him a little certificate for being the helper today. He BEAMED when I picked him up this evening. As soon as he saw me he made a bee line for the certificate to show me. He was so proud.

Me too. And it’s going straight to the pool room (well to be more precise, in the absence of the pool room it’s now stuck on the fridge) :-)

The studies I trust

8 May

These days I am only interested in research that supports what I’d like to believe is true.

So today, I am loving the research that suggests chocolate is good for you if you’re pregnant (because you never know I may be again in the future, and it validates all the chocolate I ate through my last pregnancies)

http://www.theage.com.au/news/world/sweet-tidings-for-pregnant-chocoholics/2008/04/29/1209234861933.html

But I’m choosing to dismiss the research that says breastfed babies are smarter. It might seem strange this isn’t one I’d like to validate given that both my boys are breastfed (and smart) but it’s because listening to the radio yesterday I heard a woman from the Australian Breastfeeding Association gloat about the results and make the statement that anything other than breastmilk is inferior for babies.

SO I breastfed my babies and I think breastmilk is good stuff BUT she’s missing the point totally in my opinion and that is what of all the mothers who WANT to breastfeed and can’t. I so nearly fell into that category with BC. It took him a long time to get his suck and swallow reflex in sufficient order to breastfeed and I was preparing myself for the fact that it might not happen. And I know for lots of mums for a variety of reasons it doesn’t happen. In my mums group of 12, 6 mums were unable to breastfeed. They all tried and could not for one reason or another. And then there’s my mum. She had inverted nipples and breastfed me (painfully) for just 6 weeks.

I’m all for supporting breastfeeding when you CAN. I know it frustrated me when we visited Indonesia to have women from the village ask me why I wasn’t feeding BC formula when I could afford it (the Nestle legacy of believing formula is SUPERIOR to breastmilk).

BUT I don’t see the point in beating up mothers any more than necessary. Formulas are pretty handy substitutes in my opinion and do a darn good job.

I support the IDEA of such a study and the Australian Breastfeeding Association’s mission to HELP mothers breastfeed but not for them to use these studies to make women feel bad about NOT breastfeeding.

SO for the sake of women who can’t breastfeed, for my sake as a non breastfed mother, I am here to state categorically that the methodology of the study was most definitely flawed. For all you mothers out there who DIDN’T breastfeed, allay any EXTRA guilt they’ve just thrown at you. You are wonderful mums and have provided brilliantly for your very smart children. AND maybe have some chocolate. If it’s good during pregnancy, it’s got to still be good for you now ;-).

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