Here is the finished product, the knobs and doors went back on yesterday.
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| How cute are the little utensils on the hooks! |
Monday, August 8, 2011
Little kitchen!
DinnerDad and Lolly made a play kitchen! We scoured second-hand shops a few weekends ago and got a lovely little cabinet with shelves, which DinnerDad cut down and reconstructed a little, before painting and making a sink, adding a tap. [Excuse the dark phone shots, I'm super lazy with the good camera lately!).
Here is the finished product, the knobs and doors went back on yesterday.
We love it!!
Here is the finished product, the knobs and doors went back on yesterday.
Sunday, August 7, 2011
Letting it out
I've been doing a lot of stuff for Snail lately, in the background, and occasionally let out some of my frustration while in good company. After a couple of long whinges, just as I am warming up, really, I start feeling like I am the world's worst conversationalist, a champion whinger, Boring McBorey-pants, and all round slack friend.
I should probably say up front, this is NOT about anyone making me feel this way, this all comes pre-installed. No one in my life is actually rolling their eyes or plotting their escape, swearing never to see me again [I don't think...]. Oh no, this is all just what I'm telling myself as I'm talking.
I usually shut up round then.
It's just all really, really big. And sometimes awful. Funding sucks, medical people are not always awesome, no one seems to get anything done, or know what to do, and if you don't ring, and ring, and ring, you don't get called back. Some things are funded and other, really useful and obvious things, aren't. Administration sucks.
For example: in the past couple of weeks, I've been HOURS on the phone dealing with money from a rather large government department that got paid to Snail's mother that should have been split equally between her and DinnerDad, despite every other bit of funding for Snail in the past 8+ years being split 50/50 (as is her custody). Apparently, this payment can't be fixed. "Sorry!" Another government payment got over-estimated, and there goes another two, hour-long conversations, with two different government workers down the time drain (otherwise known as my life).
Here's a selection of what I'm doing or organising at the moment for Snail:
- a stroller style chair which we hope will be more suitable when we're out and Snail has seizures - like these ones!
- a tiltable but still self-propelling capable wheelchair
- dealing with the fact that the funding agency only wants to fund one chair, and also, not yet, as her current chair isn't 5 years old, so should, apparently, still be fine for her (!!)
- picking the chair
- trying to trial different chairs
- getting various physiotherapists to advise on the chairs
- applying for the chairs
- new restraints for our car
- researching adapting our car for wheelchair travel
- boggling at the fact this is funded in at least two other States in Australia, but not the State we live in.
- getting new orthotics prescribed, funded, and fitted (including casting)
- referral and appointments for a big CP centre to see an orthopedic specialist and get a gait assessment
- trying to get an appointment with her old paediatric neurologist, who now no longer takes private patients
- getting her medical records from said specialist
- referrals and appointments with a new epileptologist
- referrals and appointments with the Children's Epilepsy Centre in Melbourne (the only program of its type in Australia)
- the variety of tests (including MRI under general) that need to be done for all these appointments
- trying to coordinate this stuff, as she also needs a hip x-ray (also under general) and we only want one procedure to do both tests
- a new shower chair
- a switch adapter for the Mac
- getting an iPad prescribed and funded (in QLD, the funding body don't fund iPads)
- trialing new nappies, as Snail has grown heaps, and her current ones aren't absorbent enough
- sorting out the funding for nappies (see the above, whoops, we paid it to the mother phone call fun!)
A lot of this stuff takes time, and is frustrating, or turns out not to be possible, or we have to pay for it ourselves, and so on and so forth, ad infinitum. Add on top of this that we don't get on with Snail's mother (at all), and that some of the stuff that Snail deals with now that makes it all necessary is just really fucking sad and depressing and never-ending and worry-about-the-future-ish, you can see that if I start talking about "my day" or "what have you been up to," and I don't stick strictly to the awesomeness of my three year old, that I suck as a conversationalist.
Because what I've been up to is this: I've been dealing with seizures, or DinnerDad's bloodly ex-wife, or some government department, or some medical department, or trying to pick a new wheelchair because Snail gets so many seizures and her current chair is so wildly unsuitable for this that I'm practically housebound in case she seizes, and, and, and..
Now I have to apologise to my blog for boring it to death with my stuff.
I should probably say up front, this is NOT about anyone making me feel this way, this all comes pre-installed. No one in my life is actually rolling their eyes or plotting their escape, swearing never to see me again [I don't think...]. Oh no, this is all just what I'm telling myself as I'm talking.
I usually shut up round then.
It's just all really, really big. And sometimes awful. Funding sucks, medical people are not always awesome, no one seems to get anything done, or know what to do, and if you don't ring, and ring, and ring, you don't get called back. Some things are funded and other, really useful and obvious things, aren't. Administration sucks.
For example: in the past couple of weeks, I've been HOURS on the phone dealing with money from a rather large government department that got paid to Snail's mother that should have been split equally between her and DinnerDad, despite every other bit of funding for Snail in the past 8+ years being split 50/50 (as is her custody). Apparently, this payment can't be fixed. "Sorry!" Another government payment got over-estimated, and there goes another two, hour-long conversations, with two different government workers down the time drain (otherwise known as my life).
Here's a selection of what I'm doing or organising at the moment for Snail:
- a stroller style chair which we hope will be more suitable when we're out and Snail has seizures - like these ones!- a tiltable but still self-propelling capable wheelchair
- dealing with the fact that the funding agency only wants to fund one chair, and also, not yet, as her current chair isn't 5 years old, so should, apparently, still be fine for her (!!)
- picking the chair
- trying to trial different chairs
- getting various physiotherapists to advise on the chairs
- applying for the chairs
- new restraints for our car
- researching adapting our car for wheelchair travel
- boggling at the fact this is funded in at least two other States in Australia, but not the State we live in.
- getting new orthotics prescribed, funded, and fitted (including casting)
- referral and appointments for a big CP centre to see an orthopedic specialist and get a gait assessment
- trying to get an appointment with her old paediatric neurologist, who now no longer takes private patients
- getting her medical records from said specialist
- referrals and appointments with a new epileptologist
- referrals and appointments with the Children's Epilepsy Centre in Melbourne (the only program of its type in Australia)
- the variety of tests (including MRI under general) that need to be done for all these appointments
- trying to coordinate this stuff, as she also needs a hip x-ray (also under general) and we only want one procedure to do both tests
- a new shower chair
- a switch adapter for the Mac
- getting an iPad prescribed and funded (in QLD, the funding body don't fund iPads)
- trialing new nappies, as Snail has grown heaps, and her current ones aren't absorbent enough
- sorting out the funding for nappies (see the above, whoops, we paid it to the mother phone call fun!)
A lot of this stuff takes time, and is frustrating, or turns out not to be possible, or we have to pay for it ourselves, and so on and so forth, ad infinitum. Add on top of this that we don't get on with Snail's mother (at all), and that some of the stuff that Snail deals with now that makes it all necessary is just really fucking sad and depressing and never-ending and worry-about-the-future-ish, you can see that if I start talking about "my day" or "what have you been up to," and I don't stick strictly to the awesomeness of my three year old, that I suck as a conversationalist.
Because what I've been up to is this: I've been dealing with seizures, or DinnerDad's bloodly ex-wife, or some government department, or some medical department, or trying to pick a new wheelchair because Snail gets so many seizures and her current chair is so wildly unsuitable for this that I'm practically housebound in case she seizes, and, and, and..
Now I have to apologise to my blog for boring it to death with my stuff.
Friday, August 5, 2011
Thursday, August 4, 2011
A Plug for Mission iPossible
Readers in the special needs realm will have heard (or been personally affected by!) the iPad donation snafu rocking the disabled kids blogosphere the last couple of weeks. I wasn't personally affected, but have read along in a kind of drop-jawed horror as it all unfolded. The interested might view this post (and the comments) at I Love Max, or Blogzilly's take on things. It seems to me (from an outsider's perspective) that a bunch of families got promised an iPad for their disabled child which was not delivered (and perhaps never intended to be delivered in the first place). Money was raised and promised broken. It all sucked.
Meanwhile, some awesome bloggers decided this wasn't really okay, so formed Mission iPossible to raise money and ensure that everyone promised an iPad, gets one. Any money raised goes via a registered charity (so no tricks), and the process is tranparent, including some simple verification procedures about who ends up getting the iPads.
It's a seriously tear-welling effort that's made of awesome. Head over to the blog or facebook page and add yourself to the people who want to make this a bit less sucky a thing to have happened. And let's hope the truth surfaces, eventually.
Grab this Button!
Meanwhile, some awesome bloggers decided this wasn't really okay, so formed Mission iPossible to raise money and ensure that everyone promised an iPad, gets one. Any money raised goes via a registered charity (so no tricks), and the process is tranparent, including some simple verification procedures about who ends up getting the iPads.
It's a seriously tear-welling effort that's made of awesome. Head over to the blog or facebook page and add yourself to the people who want to make this a bit less sucky a thing to have happened. And let's hope the truth surfaces, eventually.
Grab this Button!
Wednesday, August 3, 2011
Pop has a party
It was my Dad's birthday in July, and we caught up on Sunday to celebrate!
Both Lolly and Snail are, to put it mildly, HUGE fans of my parents... HUGE!
DinnerDad made an awesome Japanese feast.
I made a cake. A ginger and spice cake, with cream cheese icing. It's probably important at this point to know something key about me: I'm not a cook. I was actually of the School of Burning Toast in my earlier years. Eventually I had to suck it up and learn to cook some things, especially since the kids, but lately I've got more into actually enjoying it. Or at least, not wanting to poke my own eye out as I do it.
Now, apparently, I'm a recipe adapter, and someone who thinks "oh, I've got that leftover buttermilk (note it was LEFTOVER, I'm clearly made of the awesome cooking stuff with buttermilk) that I'll sub in for yoghurt there, great." Buttermilk!
I also have my own way of making cream cheese icing. My own way!
If I sound chuffed with myself, it's just showing how NOT a cook I was. I'll be on Masterchef next...
Oh, and happy birthday, Pop!!
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| Pop! |
Both Lolly and Snail are, to put it mildly, HUGE fans of my parents... HUGE!
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| Party time |
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| Presents! |
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| Snail uses a balloon for a pillow. This does not always end well... |
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| Lolly is musical with chopsticks |
Now, apparently, I'm a recipe adapter, and someone who thinks "oh, I've got that leftover buttermilk (note it was LEFTOVER, I'm clearly made of the awesome cooking stuff with buttermilk) that I'll sub in for yoghurt there, great." Buttermilk!
I also have my own way of making cream cheese icing. My own way!
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| Let me repeat for emphasis: My own way!! Buttermilk!! |
Oh, and happy birthday, Pop!!
Tuesday, August 2, 2011
Soccer, Picnics, and Epilepsy
Saturday is school soccer day round these parts, this weekend Smash's game was at the Gold Coast (an hour or so from our place), and we had a picnic to go to for lunch, so our Saturday was loading up the kids and having driving adventures.
It was a gorgeous day, and the school's soccer fields were literally right on the water.
The girls were cute. And Smash's team even won (I'm not big on watching the soccer games, I confess, I have to ask him after the game is over. 4-nil apparently...so, Go Team!).
One long drive back into West End (where DinnerDad has the awesomeness that is a carpark for work) and an even longer walk along the river to go to the Cerebral Palsy League's Picnic in the Park. I should have reconsidered the long walk given my current lung capacity. *gasp, cough, splutter* Damn colds.
Anyhoo, after much whinging (me), and wheeling (the girls) we made it to the CPL picnic, got ourselves some delicious woodfired pizzas for lunch, and that's when the seizures started. Nothing too major, seizure-wise, but enough that Snail was pretty floppy and disinterested in stuff, getting short seizures, laughing and limbs flailing, and so on. We gave her some meds and beat a hasty retreat, as short seizures are often the precursor to big, tonic clonic seizures, and dealing with major seizures in the middle of the city is never our idea of a good time. She missed out on riding the Liberty Swing *sad face*.
One quick bounce for Lolly on her first ever giant bouncing castle was all we managed. And while she was on there I was finding meds for Snail and generally making a shitty face at life.
5 minutes of actual fun at the picnic, then we all turned round, walked the long walk back to the car, and came home.
If I ever meet Epilepsy face to face, I'm kicking it in the balls.
It was a gorgeous day, and the school's soccer fields were literally right on the water.
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| And they have a coffee van. Awesome. |
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| Smoochy |
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| I love this po-faced cafe set shot of Snail. She's about to sneeringly judge someone's fashion, whilst reading the New Yorker. |
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| Snail, generously sharing DinnerDad's coffee with DinnerDad |
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| Wheelchair on the water |
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| DinnerDad, Snail, and Smash on the boardwalk at Southbank (Brisbane River) during an enforced rest. |
One quick bounce for Lolly on her first ever giant bouncing castle was all we managed. And while she was on there I was finding meds for Snail and generally making a shitty face at life.
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| Being a "green horsey" on the bouncing castle. |
If I ever meet Epilepsy face to face, I'm kicking it in the balls.
Monday, August 1, 2011
Cool reads from my feeds
I'm sharing the interwebz lurv today, with some funny and cool stuff I've been reading.
First up, on Doing art with kids, from Parenting. Illustrated with Crappy Pictures. This pic looks a LOT like Lolly's last art sessions. And the blog is all round awesome and hilarious [thanks to Rachel from spinnering for putting me onto it!]
Carl Thompson from Working At Perfect, on Electric Wheelchair Etiquette.
60 [mostly] cool 404 error messages, at Hongkiat.com [many are average, but some are awesome!]
My friend Kestrel made me lol with this on Facebook, from Unhappy Hipsters, Montessori peeps will love it.
No bibliophile or sefl-respecting atheist/agnosic can go past the Amazon reivews of the King James Bible, the LOLZ, they hurt!
Finally, Stickman Communications' Hannah Ensor is working on a kid's picture book with wheelchair kids in it! Hooray!
First up, on Doing art with kids, from Parenting. Illustrated with Crappy Pictures. This pic looks a LOT like Lolly's last art sessions. And the blog is all round awesome and hilarious [thanks to Rachel from spinnering for putting me onto it!]
| © 2011 Amber Dusick |
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| (C) 2011 Lolly |
Carl Thompson from Working At Perfect, on Electric Wheelchair Etiquette.
60 [mostly] cool 404 error messages, at Hongkiat.com [many are average, but some are awesome!]
My friend Kestrel made me lol with this on Facebook, from Unhappy Hipsters, Montessori peeps will love it.
No bibliophile or sefl-respecting atheist/agnosic can go past the Amazon reivews of the King James Bible, the LOLZ, they hurt!
For those of you who don't know, this is God's second novel after the Old Testament. It's a marked improvement, in my opinion. He got rid of a lot of his previous angst and scorn, and has really begun to show some of the maturity present in his later works. He's become a much more loving and kind God....
Finally, Stickman Communications' Hannah Ensor is working on a kid's picture book with wheelchair kids in it! Hooray!
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| (C) Hannah Ensor via here. |
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