Death

Sorry, not really the cheeriest topic.

But, the subject of death has been the hottest conversation point in our house over this long weekend. S has been grilling me with questions about death, including questions about the death of Jesus and wanting to know how many Australians died in the First World War, telling me ‘look it up on the Internet when we get home mum’,when I couldn’t tell him. (In case you were wondering, just over 60,000 Australian soldiers died throughout the whole war, with over 8,000 dying at Gallipoli. When I gave S this answer this morning, he replied ‘What about the Second World War’? Back to google for that one later…)

These aren’t the first questions Master S has had about death. In fact, he has developed quite a fascination with it. It’s a fairly healthy fascination, not particularly morbid, just incredibly curious.

It started a while ago, when we passed a large cemetery near the city centre and he asked what it was. Now, every time we pass that same cemetery, he hits me with more and more questions of increasing complexity about the subject of death, the afterlife and the fate of those who remain left behind.

But yesterday was the first time since then that he had actually stepped inside a cemetery since his fascination has begun.

Every year on Easter Monday my extended family take part in a tradition that we’ve enjoyed ever since I was a child – we attend a small town Easter parade and also have a family gathering at a lovely picnic spot nearby. And in between these two events, we now also visit the nearby cemetery and have a cup of tea ‘with’ my great uncle who is buried there. It is kind of an odd family tradition I will admit, but is a lovely way to remember a lovely man.

Being up so close to the gravestones led S along a whole new wave of questions both while we were there and after we left. Here’s just a sample of the questions I can remember from the drive back to Melbourne (believe me, there where more, many more – it was a long drive).

Who digs the graves? What are people buried in? How do they get to the cemetery? What do they wear? Who writes on the gravestones? Who decided what should be written on the gravestones? What is inside a grave?….

Leading of course to the more complex questions which, with my lack of concrete faith always pose challenges to me. I’ve summarised my answers so as to explain the follow on questions.

What happens when you die? (Some people believe you go to Heaven) Where’s Heaven? (No-one really knows) What do you do in Heaven?  (No-one really knows that either, but people say it’s a very happy place where you have a lot fun).  What happens to your body when you die? (It is in the ground where it gets buried). Why doesn’t anyone know what you do in Heaven? (Because you don’t come back from there). Why not? (Oh look at those cows! Aren’t they big? Wouldn’t it be great if we had a cow so we could get fresh milk every day?). What do other people believe? (About the cows?) No, about what happens when you die? (Some people think you come back in another body). Which body? (Just a new body, like a baby). Do they remember about before? (Some people think so). What happens to your old body then? (It gets buried, or in some places, they burn bodies when people die) But what happens when you die? (I told you, you get buried or sometimes burnt). No, I mean when you are dying? (Oh. Your body stops working.). When will I die? (Hopefully when you are very old). How old? (Like a hundred). Why didn’t your mum die when she was a hundred? (Some people die when they are younger). Where is your mum? What is she doing now? (I think she is watching you, thinking what a gorgeous boy you are.) Are you sure? (I think so, but I can’t be too sure).  But why? Why aren’t you sure? (We just don’t, because when we die, we can’t come back). But you just said some people come back in another body. (Oh, I just remembered we have more Easter eggs! Who wants another Easter Egg?!!??)…

And so on.

Further along the road, as planned, we stopped at the cemetery where my mum is buried. It was the first time I had taken the boys there, but  not the first time I had felt such sadness that she isn’t here to share in her gorgeous grandchildren. She would have loved them. And they would have adored her.

My sister, also on the long drive home, joined us at the cemetery with two of her kids. We placed some flowers (which I had just picked overhanging from the fence at my childhood home nearby) and some Autumnal leaves from a nearby tree at the grave and reflected momentarily.

Until the kids got cold. The sun was already dipping beyond the horizon. The kids laid their hands on the gravestone. We all said goodbye to Grandma Penny.

And as we walked back to the car to drive home home, S had one more question for me: ‘So what is written on Grandma’s gravestone?’

You left us with memories so rich.

It is a line from a poem I wrote as a 17 year old in mourning. A poem I read at her funeral and knew by heart.

But yesterday, as we crunched through the Autumn leaves with a chill in the air on our way back to the car, I realised I hadn’t thought about those words for a very long time.

For the rest of the drive home, S’s questions weren’t about death, they were about life – my mum’s life. There was lots of laughter and joyful questions and answers. Memories still so very, very rich.

I hope you and your family have shared a very special Easter together xo

Recovery

Last Sunday I took part in the Run For the Kids – a fun run raising money for the Royal Children’s Hospital here in Melbourne. I ran 14.38kms along with thousands of others. Not exaggerating there. I finshed the run in 1:28:04 minutes and I was the 9,873rd person to cross the line. There were just over 20,000 runners in total.

It was a beautiful day and a gorgeous run – taking in quite a few of a the city landmarks. The mood was jovial, with some runners dressed in costumes and lots of supporters along the sidelines – including my faves holding a sign up to mark the ‘last bast#@d hill’ before the finish line. A lot to smile about.

I also loved that I ran with my sister and my best friend. Well, we started the run together and met up again afterwards. It was too hard to stick together amid the crowd while we were running.

For the first 5kms of the run I felt great. Really strong and in control, but my power slowly lagged. Got a bit of an extra kick (and a good giggle) with the boost of ‘Eye of the Tiger’ bursting loudly through speakers along the Docklands section of the run, but by the time I neared the 12km mark I was exhausted. I had never run more than 10kms before and my training for the run had been pretty ordinary. Sick kids, busy schedule, appointments, therapy, laziness….I just hadn’t prepared as well as I should have and my legs were feeling it.

But just as I was seriously considering walking for a bit (or stopping at a nearby cafe for a strong latte!), I approached the 12km point. There was a banner to mark each kilomtre and each banner had a photo of a child, a patient of the RCH. And on the banner for the 12km mark was a little girl in a kaye walker. Very much the same as the walker S has used since he was 2. That smiling, cheerful little girl looking down at me from the banner urged me on. I ran the last 2 and a bit kms with extra effort that come from I don’t know where and I didn’t stop thinking about her and about S until after I crossed the finishing line. Exhausted, but happy.

I still have no idea who the little girl is, but like S she’s clearly someone who’s been lucky enough to get care from the great team at RCH. We can’t fault the medical support we’ve had for S (and in more recent times M) for everything from all things CP related, to his teeth, their skin etc etc. It’s an amazing place and we dug deep again today to make our donation to the Good Friday Appeal. We feel so lucky to have a hospital of this quality available to us. And watching bits and pieces of the appeal today, I also realise how very lucky we are that our visits are fairly few and far between.

Almost one week on from the run, I am still recovering. My body is still sore and I have been going to bed mighty early every night and sleeping like a log. I can’t believe how much I am still feeling the effects. I tried going for a short run yesterday but my body was just not up for it. If I can convince my body that I’ll treat it more nicely and it will let me run again, next year, I will be sure to train more seriously and schedule an appointment with the chiropractor and a lovely massage for the day after too.

Seeing as my energy levels are virtually zero, it’s a good thing that the boys have been happy to have a low key week too. They are all still recovering from gastro and colds, so we’ve been spending much of these hols at home, sadly cancelling quite a few scheduled play dates.

As much as we’ve been sorry not to catch up with people, it has been nice to spend so much time at home. My husband has been building our front fence (finally!) and the boys have been doing lots of playing together, running shops and holding concerts, making biscuits and doing puzzles, playing on the iPad and watching TV and DVDs (Belinda, just for you – Pontypandy is town where ‘Fireman Sam’ lives ). We’ve had lots of days where we’ve been in our pjs all day long. Love it.

I think as a family, we are also collectively all still recovering from the reality of the first term of school/kinder. S was so exhausted by the end of term that he couldn’t do much more than sit on the couch and tell me how tired he was. And I think even M was tired from starting kinder. Baby A, on the other hand, has just been loving having his two brothers around all day long so he can follow them and join in their games (and try and take control of them too I might add – he’s quite a fan of Fruit Ninja on the iPad!)

It’s been such a huge start to a huge year that it’s been special to have just a bit of time at home, together. And I can barely believe that we are already up to the final (long) weekend of the hols. We have a few lovely things planned over Easter that should end our quiet hols on a positive note and have us all geared up for term 2 (lots and lots of chocolate will certainly help!)

I hope everyone has a wonderful Easter, however you choose to celebrate it. I’ll be back early next week to tell you about ours xo

Easy English

A good friend of mine runs a company that creates Easy English versions of documents. Easy English uses simple and clear language, short sentences, larger font size and often pictures and symbols. The aim is that it makes documents accessible to everyone, including people with intellectual disabilities, low literacy levels, ESL backgrounds etc. Even for the Uni educated word loving folk, such simplified documents are a great way of filtering through all the $%#!@ jargon that goes along with documents and getting to the facts simply and quickly. A few documents she has been part of are as follows (links are to largish PDF files).

National Disability Strategy

National Carer’s Strategy

And I think it’s well worth check out this picture and attached explanation that won a recent competition my friend ran. I think it describes very clearly how the ‘disability system’ (for want of a better phrase) works and why it’s so flawed.

Keyguard for iPad and Proloquo2go

The most common search that brings people to my blog is for a keyguard for the iPad when using Proloquo2go.

I have good news! There is a US company making keyguards at a ridiculously competitive price for any orientation of the P2go that you are using.

We have one and it’s great. After all, a keyguard is very much a simple piece of perspex with inserts cut out. It isn’t rocket science. The fact we paid over $300 for the one we have for our Dynavox still strikes me as crazy.

The company is called Lasered Pics. Here is their website. And yes, they do ship to Australia for a very reasonable fee.

The keyguard is thinner than the one we have for the Dynavox, but it does the job just fine. It has assisted S with more accurately navigating the page and for $20 US (+ postage), they are a very good buy.

The keyguard is designed for use with the standard Apple iPad cover (which we have) and it is attached to the iPad with small adhesive ‘dots’. My only concern is that I am not too sure how well these dots will hold their stickiness if the keyguard were taken on and off lots of times (if, like in our house, the iPad is used by all members for many purposes!)

Overall though, a very worthy product. I will be ordering another next week for the p2go qwerty keyboard.

The company are also making keyguards for other apps. When I emailed them, I found them to very helpful and professional. They responded to all emails promptly and the keyguard arrived quickly and well package.

If you have other iPad app keyguard requests, I’d definitely be considering dropping them a line.

Also, in other iPad news, some might be interested in checking out this free AAC app – Verbally. The voices are very robotic (so robotic that it can skew the message) and in my opinion the screen seems far too busy for my 6 year old to get his head around, but the fact it’s free and contains good word prediction suggests that it could be a very useful resource if developed over time. I will let you know what Master S thinks of it when he gets to have a play. Hopefully over time they will add more voices and improve the speech to be more natural.

And finally, I (along with S’s 2 aides) will be attending an iPad in the classroom PD on the first afternoon back at school after the hols. Really looking forward to seeing what they have to share.

Words of wis(t)dom

I am back!

I have a new computer.

I needed a new laptop because I spilled a glass of water on my old one. Word of advice – don’t. But if you do: turn it off straight away, wipe off excess water, turn it upside down and put it somewhere to dry out. Don’t try turning it on for at least 2 days.

Or, you could do what I did – swear at the screen and yourself for your stupidity until the screen goes black and will not turn on ever again.

And then get a new computer. Oh, and  have a clever husband who can at least rescue the hard-drive so you have all your files and photos.

It is so scary when you think you’ve lost all your stuff. BACK UP your files ladies and gentlemen. BACK THEM UP.

I can’t believe that it’s nearly the end of term 1. S is so exhausted. He has spent most of this weekend on the couch watching movies and telling me how tired he is. I don’t know how many days of school he is going to make this week. And don’t really mind if it’s none. He’s worked so hard and he’s ready for a break.

We’ve been more than happy with the school and everything has gone relatively smoothly – with the exception of a few bits and pieces that still need doing (hand rail in the toilet, where are you?!). And one of S’s aides deciding that she needs to cut her days – meaning she won’t be working with S anymore. Annoying because I’ve spent quite a bit of time in the classroom with her, but these things happen and I appreciate her making the decision sooner rather than later. She’s lovely and S has enjoyed working wth her.

Then there was a potential threat to my cordial relationship with the school when the principal suggested to me that she wanted to advertise for someone with a medical/nursing background to be S’s replacement aide. Why? Because he dribbles. Because he’s had a few toilet accidents (toilet rail, where are you?!) and he has eczema that needs to have cream put on it every now and then. Not exactly medical emergency 101.

I was clearly very persuasive in my immediate protestations about how unneccesary and inappropriate I thought that was because at the end of the conversation, the principal told me I must have ‘misinterpreted’ her. Which threw me into a momentary panic that I had imagined that’s what she’d said in the fashion of an incredibly oversensitive and overprotective mother. But no. When I asked her directly, she did concede that’s what she’d said. But she now thought that wasn’t what she meant, or what she should have meant. Or something.

Whatever the case, I’m just glad she saw that she was wrong and that it didn’t go into a job description. My son does not need a nurse or a carer. My son needs someone to assist him with his education.That’s why he’s at school.

And then, lo and behold, along came Mr M -  a male classroom assistant! Experienced working with kids with CP, keen for work and available now.

He’s been with us for a week and we think he’s a keeper. Hopefully next term, he’ll do 3 days and the other aide will do 2.  More on how that goes later, but for now, very happy!

In other news, on Friday we had the long waited appointment with a developmental paed for Master M. It was a long appointment too – over 3 hours.

It seems that M has a severe language delay. It seems he also has some ‘autistic traits’.

He has no diagnosis, and might never need a diagnosis. But we will be back in 6 weeks for a follow up appointment. And we will be starting speech therapy very soon. There is no doubt that he definitely needs this.

I thought I’d come away from the appointment feeling drained and sad, I didn’t.

I will admit that it doesn’t seem much fair that as a family it looks like we are having to tread along a different path to most, again. But you know I think we’re not that bad at being the ‘different’ family. I was never much one for being part of the pack anyway.

Mostly, I just feel incredibly lucky that we have access to such wonderful staff at the RCH. And that S’s paed has kindly taken us under her wing and promised to see M for all future appointments. Having that sort of support makes all the difference.

The appointment made me feel just a little less insane for deciding to take part in the 14km+ Run for The Kids in a couple of weeks. I haven’t set up a fundraising page, but I encourage anyone with a few dollars to spare to throw a few dollars towards the Good Friday appeal. Definitely a worthwhile cause. There are many little kids who frequent the RCH with files bigger than phone books whose families have a lot more reason to pull the ‘It’s not fair’ card than we ever will.

There are so many positives about what M is doing. Even in the last few months he’s made such incredible gains. He’s loving kinder and childcare and is talking more and screaming less. Yes, we’ve got some work ahead with him. However, I am not sure why I feel so certain, but I just know that whatever path he takes to get where he needs to go, he’s going to be OK.

He turned 4 last week and of course we celebrated it by going on a train – to the Puffing Billy ‘Thomas Day Out’. He adored every minute of it. He thought the Fat Controller was hilarious and loved seeing Thomas up so close.

Happy birthday to my gorgeous little Bean. Love you more than chocolate . xo