They say the NDIS gets easier each round. I think this is right but you still have to remember something. One very important thing to remember is prices do go up, so while you think you have enough, and fortunately I do have enough, service providers do need to raise costs to go with the times.

You also need to keep a close watch that you are on the right track before you get to the end of your plan and find there’s heaps left or it is all gone.

For me this is looking like another good year. This year we are concentrating on renovating the house to make it easier for me long term. We are getting a walk in shower so people don’t need to help me out of the bath giving me independence. We are also getting ramps installed for easy access in and out.

I also got lots of respite and some individual respite with a support worker

The meeting was good last year with a very knowledgeable planner and I find that is very helpful in working through what is needed.

The NDIS gets a bad rap at times but it is good when you know how to work with it. I am hoping with each year it will one day become perfect for everyone.

I like to exercise in what ever way I can. It keeps me from loosing strength and mobility. With CHARGE sometimes some parts of my body don’t work as well because I have no balance. I have to know where I am to be able to get where I am going.

One thing I can’t do is things like jumping. I need to have both feet firmly on the ground. When I am in the water i find it much easier to move and I feel the water holds my weight and i cam just float.

I am having swimming lessons because I have trouble swimming on my tummy with out swallowing water. I blow bubbles and i can put my head up but in between i tend to swallow water.

I also like walking and stretching. Walking helps my tummy pain to as things pass through quicker. The more i move the stronger I get and am able to do more.

We are now in to 2020 and people are thinking of highlights. In my efforts to stay positive this year and not take everything so personally I want to think back on my good times. 2010 I started to plan for my first ever US charge syndrome conference. Also I went to the Australian one in Perth.

2011 my cpp programme house got a big renovation which made it bigger and easier for everyone to use. I also had my first trip overseas with out mum and went to Orlando for the international CHARGE conference.

2012 I went to the CHARGE conference in Sydney and I had fun with friends.

2013 I went to Arizona for another CHARGE conference and traveled around the USA.

2014 I went to New Zealand for another CHARGE conference.

2015 I started thinking about the NDIS and attending workshops to prepare for it. I also went on the Northcott ski trip and had fun.

2016 I went to the Gold coast for CHARGE conference and spoke on the adult panel.

2017 I planned for my NDIS and went on it.

2018 I started respite at Northcott Roselands and left my old respite. I also went to Melbourne for the CHARGE conference.

Last year s highlight was definitely Dallas and Hawaii.