Wheelchair lego! 2 things that needed to be combined a long time ago

Lego has finally released its first wheelchair minifigure! I rejoice every time I see toys in the shop that recognise the disabled community as it helps our kids to not feel “different”.

Its all thanks to a petition which has more than 20,000 signatures.

Read the full article from ABC here:


Enter your postcode to find out when the NDIS is coming to you…


BREAKING NEWS: first NDIS roll out plans released!

In news just in, the NSW and Victorian Governments have just released their NDIS roll out plans.

In one of the first acts of Malcolm Turnbull as Prime Minister, he stood with the Premiers from NSW and Victoria in Canberra to sign the bilateral agreements that will make the NDIS a reality for thousands of people with disability in NSW and Victoria.

This is a significant milestone on the road to the full roll out of the NDIS across Australia.

see the full article here: http://www.everyaustraliancounts.com.au/breaking-news-first-ndis-roll-out-plans-released/

A great inhome care service for our children

I have been using NSW inhome care for over 2 years now and they are an absolute lifesaver!
I’m sure a lot of other parents are in the same boat as us and there aren’t really a lot of people who can care for our special needs children while we have a break, work or attend to our other children. Day care isn’t an option for us due to my daughters very high needs and seizures, and not to mention the germ factor. So when I was sent information about NSW inhome care I was very keen to see if we qualified!

We have had some amazing carers/educators from the service come out to our house over the past 2 years. I have trained them to help me with my daughters physio, getting her into her different equipment, sensory play, and using her ipad head switching apps. It has been a HUGE help as I have a 2 year old who requires a lot of attention. I would never be able to accomplish all of her therapy goals without the help.

You can find out more information about the service here: http://nswfdc.org.au/nswihcs/about-us

Below are some photos taken by Magda Jansen from NSW Inhome Care of our Educator Basma Maskaleh.

DSC_0185 DSC_0099 DSC_0109

HelpKidzLearn iPad and Android Apps. Great site for special needs childrens apps

These site was recommended to me by our speech pathologist. We are currently working with our daughter to use a switch with her head as she doesn’t really have much arm function.

There are only a few apps that are really suitable for her due to her low vision and capabilities. My 2 favourites are listed below, but please have a browse through all their apps as they are all fantastic and they have a great range for all levels.


Big Bang Pictures

Developed in conjunction with specialist teachers in the field of visual impairment, the activities have been specially designed for use with children with low vision, including those with cerebral visual impairments and complex needs.

High contrast animated images and great sound effects designed to provide visual stimulation and to develop and assess visual preferences. With a choice of three styles of image and a choice of eight basic foreground and background colours, including black and white, these activities are ideal for assessment of picture recognition and colour preferences.


Big Bang Patterns

Developed in conjunction with specialist teachers in the field of visual impairment, the activities have been specially designed for use with children with low vision, including those with cerebral visual impairments and complex needs. It is an ideal tool to assess preferences and develop visual skills.

Big Bang Patterns contains four specially created sets of animated patterns, each containing twelve different animations, accompanied with a choice of music or sound effects.


NSW Paediatric Palliative Care website launch

Last Thursday we were lucky enough to be invited to the NSW Paediatric Palliative Care website launch which was officially launched by The Health Minister Jillian Skinner.


This website is a valuable resource for parents and clinicians. I think it will help break the barriers some families face when first hearing or thinking about palliative care. I know when we were referred we were a bit reluctant, but we were lucky enough to meet a lovely team at Sydney children’s hospital who really care about our daughter and the rest of our family. I know there are families who will get referred and may not have any support or a great image of Palliative care, I think this site will definitely help with that introduction.

We were also interviewed by Prime 7, you can see our interview here https://au.prime7.yahoo.com/n3/news/a/-/national/28261022/website-helps-inspiring-families-video/

And of course I had to get a photo with the Minister for Health 🙂


My favourite pieces of equipment from the ATSA Independent Living Expo Sydney

I went along to the ATSA Independent Living Expo Sydney and was really impressed by some of the new pieces of equipment I saw.

One of my Favourite suppliers, GTK rehab had a great big stand and some new things I love:
Now I really wanted one of these when I had my second baby as my daughter could not go into a standard stroller, it’s finally available, a Phil and Teds double stroller, the top part has all the great support you need: head support, pelvic support, lateral support. And underneath a snuggly spot for baby 🙂 The baby pod is removable.

A beach buggy of course! Who doesn’t love the ocean?

I love anything from Leckey!
This is my Favourite as my daughter uses it all day long, its great for side lying, tummy time and sitting.

This next stand really excited me as my daughter loves the swing! We had to get one shipped from America and its now not available anymore. These guys have a huge range of play equipment for special needs kids of all ranges.

The Tank 🙂

There were some cool trikes, the seat is moulded to your body shape.

Last but not least was the bed that turns you!!! – The Freedom bed
First time in Australia. Its height adjustable. Head and leg elevation. Has voice control. Can be set with a timer.

Now we just need someone to fund them 🙂



The R Word

The R Word gets thrown around all the time, and most of the time people don’t realise how it affects parents and carers with special needs children. We really need more awareness around how it makes us feel and any children who understand that the word is being used to criticise someone.

The word always makes me cringe and makes me upset and angry all at once, hearing it spoken or just seeing it in print.

This article is a great read:

My beautiful sons are why you need to stop using the word ‘retard’
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How Variety Club has helped us

Just recently we have been funded some fantastic equipment through Variety Club, an iPad, and a Rockerski, which all have been a HUGE help in keeping Amara happy and calm. Which can be a hard task some days. without Variety club we would not be able to afford these items. I am forever grateful to them for their ongoing support 🙂


Cerebral Palsy Misdiagnosed

I read this article yesterday and I am still gobsmacked about what happened to this woman!

She spent 30 years thinking she had Cerebral Palsy when she really had dopa-responsive dystonia (DRD), a rare muscle disorder that can be treated with one pill!!

She isn’t angry and doesn’t regret the surgery she had on her hips. My daughter had the same surgery when she was 2 years old and I remember the pain she went through and all I wanted to do was take it away for her. I am in awe of this woman, I know I would be angry and wanting to blame someone for the 30 years lost, but she doesn’t, she has no resentment or anger towards the doctor who made the mistake.

Read the article here: http://www.dailymail.co.uk/femail/article-3047729/Woman-spent-30-YEARS-fighting-debilitating-cerebral-palsy-discovers-misdiagnosed-symptoms-cured-just-one-pill.html