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.


Barbour, L., Borys, S. and Branley, A. (2018). This is Jonathan, one of the thousands worse off under NDIS. [online] ABC News. Available at: [Accessed 6 May 2018].

Lee, M. (2017). The NDIS promised choice and control. [online] The Monthly. Available at: [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.

Tuesday, 2 August 2016

Blackwork adventures with Marknad

I have always loved Blackwork Embroidery. The stark contrast between the black thread and pale fabric allows the embroidery to stand out.

I divided the runner up with a sewing thread running thread. The table runner was sourced from Ikea, in Australia the Marknad was $5 per runner. Great value. The black perle embroidery cotton sits well on the natural coloured runner. The plan for my embroidery is to make four blackwork samples either end of the 40x140 cm table runner.

I have the "Made in France" Blackwork book, it has some lovely designs in it.

But if you don't have access to this fabulous book, check out the Elizabeth Almond Sampler Tutorials and Mary Corbet's Needle and Thread.

Thursday, 9 June 2016

But he doesn't look disabled

When I post pictures of Nicholas online, I am conscious not to post pictures that show him in a negative light. We certainly document "the bad times" so that we can remember what happened and when, but when it comes to posting online I do try and post the most beautiful pictures of Nicholas that I can find.

Pictures that can #sparkjoy

To me, my son is Nicky. I do not know him in any other sense. So when someone meets him for the first time after talking with us about his diability, they often say "but he doesn't look disabled".

Most of the physical indicators of his syndrome are hidden away.

His hypotonia is hidden by his clothes.
His lack of talking is hidden by his smile.
His lack of eye contact is hidden by his long eyelashes.
His lack of social interaction is hidden by his jittering energy.

Our friends, meaning well, will say "oh but all kids are fussy eaters" or "all kids are mischievous". We have even had people say "boys will be boys" when they saw Nicholas dismantle something in their home.

But for us we know that he will essentially always be a fussy eater, he will always struggle with strength, environment, sound and social interaction. All of these factors will influence his ability to play and therefore learn.

But he is Nicky, and I love him to bits and I can't imagine him in any other way.