Wednesday, 13 June 2018

Weekend Respite

The hubby and I stole a few days away in Sydney last weekend, by ourselves. No kids, no real commitments just both of us together. 2018 has been one hell of a ride so far and we both felt that we needed time to stop and recoup.


Sometimes as a special needs parent you tend to forget to look after yourselves. I'm back at work full time this year, so I don't have that quiet time on a Wednesday that I used to get. The plus side is that I guess my career is taken more seriously because I am full time (but that is a blog post for another day). Hubby is part time and taking over the primary caring duties. The role reversal has been interesting, along with the assumptions and statements made to me about this arrangement for our family.

As Tori gets older, we can see that in a few years time she will be wanting to get more independent, making her own way to school and back. She can basically take care of herself at the moment, she knows all the university food group basics; scrambled eggs, 2 minute noodles and toasted cheese sandwiches. She helps with the cooking and cleaning and is happy to bring the washing in when asked.

As she gets older, the irony is that Nicholas is getting harder to manage. He is still not toilet trained at seven years of age; despite working on it for the last 4 years.  Still non-verbal, he can point to wanting a drink or something to eat, but there is not much "conversation" beyond that.  He will "pinch" us when he is not getting his own way and he has started to show signs of frustration, but it is hard to reason with a 25 kg non-verbal seven year old. He is slowly developing, but it is a at a glacial pace. He still needs constant 24/7 supervision and a highly structured environment. In another life I would have two kids who would be learning their way to independence. But alas, that was not the card that was dealt to me.

And then there is the NDIS happening, which will probably happen at the same time as the NBN and cause us a whole world of pain.

In the mean time, we will try and grab respite whenever we can, be it 2 hours on a Saturday or a weekend away (which happens very very rarely). 

Friday, 25 May 2018

Man it was Mean

I've loved Steve Harley and Cockney Rebel for as long as I have had my Morris Minor. A regular on some of the mix tapes and on my record player, a lot of the songs and messages are dated but the melody and lyrics are just fabulous.

As I rotate playlists through my smartphone, albums come and go and Steve Harley found it's way back onto the playlists before Easter.


When I went hunting, I was surprised to hear that Steve Harley is still performing (and alive!).


I came across this video, I hadn't realised that Alan Parsons put his golden touch on their first album!

One of my favourite Harley songs is Sebastian ... it is beautiful the way that the strings and harpsichord engulf you and carry you along on the journey.


Monday, 21 May 2018

But don't worry because NDIS will be here to save the day

The NDIS is being rolled out in our area in September, 2018. The promise of a new land, a new landscape of disability funding is being touted. But until then, everything has come to a grinding halt. Any applications for equipment that we had in the works, such as Nicholas' stability suit, has stalled; paperwork 'lost' in the bureaucratic nightmare.

But don't worry because NDIS will be here to save the day.



My anxiety is building slowly for the NDIS rollout. Trying to stay positive is a hard act as I read articles about fellow Phelan-McDermid suffers like Jonathan Gladstone who has had his funding cut by 25% on his second-round NDIS application, people such as Micheline Lee who have documented their struggles with the 'NDIS system' and the NDIA flip-flopping over their definition of what a disability entails. My anxiety levels are building.

I agree that we need to move to a more centralised method of funding. The funding landscape at the moment is a patchwork of services. Equipment funding through SWEP, individual respite through a variety of other providers such as Alfred Health Services and Windamere and other one-off services through both state and federal departments.

The NDIS will, from a governments point of view, streamline the allocation of funds.  NDIS will theoretically give the power back to the family or person with the disability, but only if they can navigate the application and management process of the funding. Both my husband and I are university educated and we are finding the process complex and onerous; we feel for those families who might have English as a second language as they will automatically be disadvantaged by this process.

I guess this is where my anxiety kicks in. It might be because "us" as a family will have to manage my son's disability funding like a small business. Having separate banking accounts and strategies to manage funds in and out of his NDIS account. Perhaps it is the foreboding administrative pressure that we will endure that is kicking my anxiety into gear. Reflecting on how Centrelink has wrecked people's lives with false claims of debt, we worry about not "getting it right" and getting either short-changed or accused of misusing funds. At least with the current system, we know that once we get access to the equipment or service there is no question that it is needed.

So we are waiting and attending NDIS information sessions in a quest to find out as much as possible about the "system" so that we can get the most out of it.

References:

Barbour, L., Borys, S. and Branley, A. (2018). This is Jonathan, one of the thousands worse off under NDIS. [online] ABC News. Available at: http://www.abc.net.au/news/2018-05-01/third-of-ndis-participants-feel-no-better-off/9716282 [Accessed 6 May 2018].

Lee, M. (2017). The NDIS promised choice and control. [online] The Monthly. Available at: https://www.themonthly.com.au/issue/2017/august/1501509600/micheline-lee/art-dependency [Accessed 6 May 2018].

Monday, 30 April 2018

5 inspirational hot water bottle covers

Here are some gorgeous hot water bottle covers for inspiration if you are looking to create something for the Opendrawer Hottie Challenge.

1. Fox knitted hot water bottle cover

If only I could knit!

2. Toothless hot water bottle cover

My daughter loves dragons, she would kill for me to make this hottie cover.



Love these PDF patterns for hot water bottle covers, they have a lovely range. However, I haven't tested their patterns. The Sarah the racoon is my favourite!


4. Crochet Grannie square hot water bottle cover.

Foxes Lane has a great tutorial on making a Grannie-hottie.


5. Mushroom House 

I love the feel of this hot water bottle cover.

Wednesday, 18 April 2018

Opendraw Hottie Challenge 2018

It was welcomed news last night to see that OpenDrawer in Camberwell are holding another hottie challenge.

 OpenDrawer Hottie Challenge 2018


In 2011 I participated in their Hottie Challenge and I am seriously thinking of doing it again, it was such a fun process and event to be part of.



Entries have to be submitted by the 31st May and there is a $10 entry fee. Money raised will go towards SisterWorks, a non-profit social enterprise supporting women who are migrants, asylum seekers or refugees to become financially independent and happily settled in Australia.

So if you are interested in a quick crafty project this weekend, knock up a Hottie and support OpenDrawer and SisterWorks.

Saturday, 31 March 2018

Participating in Furious Fiction

Blogging was one thing that I really enjoyed at some point. I used it as a writing exercise, putting my thoughts down on paper and reflecting on things that I had made. When I was predominately at home it was an exercise that I did each morning. I’d sit Tori down in front of the TV and take my half an hour to do some blogging.

The last few years have been busy. I know that we tend to throw that term around a lot. Everyone is busy, engaged and consumed with their life. My downtime has changed from being a time when I could write and sew, to a time when I really need to veg-out and forget about the challenges that face me and my family. But I am going to try and change that around.


I’ve been trying to participate in the “Furious Fiction” challenge. I wouldn’t describe myself as a writer, but I do enjoy writing. So lets see if this monthly challenge brings back a bit more of the peace that I used to find in writing and sewing.


Tuesday, 13 February 2018

My #phelanmcdermid boy


Isn't he gorgeous?



My boy who will never grow up.

My boy who will never want for much more than the basics.

My boy who will never talk.

My boy who cracks up over Dinosaur Train.

My boy who covets biscuits like he has never eaten.

My boy who delights in running around the backyard.

My boy who knows not what jealously is.

My boy who always wants kisses and hugs.

My Phelan-McDermid boy.

My Nicholas.


Friday, 13 January 2017

Celebrate the small things

It is finally 2017 and 2016 feels like a blur. Before the year starts to get busy, I want to just take the time to write out some goals.

I aim to make time to write more.  Even if it is just 15 minutes a day. It is something that I enjoy doing and I want to do more of it.


I aim to finish creative projects.  I am pretty good at starting them, but then things happen and I have to pack them up and then I have to fight for the time to finish them again. Sometimes it is all too hard to continue.


I aim to grow stronger.  Last year I made a start with a personal trainer to build my strength up. It was amazing how much difference it made to day-to-day tasks when handling Nicholas. The ability to just pick him up was liberating. Since then I have ruptured a disc in my neck and then have bruised my coccyx when I fell on it during Rollerskating.


I aim to read with more purpose. Our society reads more than any other generation with social media, but how often do we read with purpose?


I am to spend more time with my friends. Having a child with a disability can be socially isolating. It is hard to get "time out" at home when caring for him, so often I choose a quiet afternoon over socialising. Friendships suffer as a result.


Thursday, 20 October 2016

Moscow Design Museum

Yet another example of Visual Communication being an inspiration for patchwork!

The Moscow Design Museum have some lovely icons to go with their establishment. This images screams patchwork sampler to me.


This blog post by UnderConsideration shows how they came up with the designs, truely an inspiration!

Hope this provides some inspiration!

Tuesday, 16 August 2016

Memories of days past

I have a box of old diaries and poetry books from my high school years. While tidying the linen cupboard I came across them again and spent 10 minutes reading through some of the diary entries laughing at the hilarity of some of the statements and assumptions about life.

Amongst the normal stuff that teenagers go through, there are notes about boys that I had crushes on and tags from things like my first bra, concert tickets and "Anywhere" travelcards.


In one of the entries I mention is the movie Somewhere in Time, as I wanted a boy to take me to see it. I couldn't work out if I ended up seeing it with him. But there was a whole entry on how romantic the movie was.  I still love listening to the soundtrack in the background while I am doing work.


Every once in a while, I entertain the idea of using this material of my turbulent years. for some kind of writing project. Then life takes over and I forget that I have them.