Service providers

I often see people posting about how crappy their service provider is or how good. I feel we hear about the bad stuff before the good. It is like we all need to criticise for some reason. I have done it too.

I want to tell everyone my feelings on what makes a good service provider. Firstly a good provider needs to listen to what you want. If you don’t know what you want or need, they need to be able to help without making decisions for you.

They need to listen to your concerns and help you work through them. I have been in a respite where every decision was made for me and they never addressed my concerns. I was even at times made to feel I could not complain just because of my mother’s profession. No one should feel like this. If you do, then find another place as I did and now I am much happier and very comfy.

They should hire support workers who are there for the clients not the money. I get vibes if I feel a staff doesn’t care. This makes me become a worrywart . I have had some wonderful workers and some bad ones. The great ones have fun, know what we like, and support us. The others just will do the job, no interaction at all.

Respecting everyone’s right to privacy and dignity is also a good thing to do.

I love my provider. It has it’s problems but they are very open to helping with anything I need and I am very close to my support workers.

Social media

Often we hear about the impact that social media has on society. For people with disabilities it can be only way to communicate with friends and family.

I first got Facebook in 2007. At the time I was still using my space and msn messenger. As time went on technology change and I used Facebook more and more.

To me having my Facebook means I can keep up with friends and family around the world. I find I use my messenger way more than email back befor all this came I was on a Yahoo group through my email for my syndrome. Wed email back and forwards about anything and everything. If one wanted to share a photo they would email private or through MSN. Some of my CHARGE families had blogs and they would link to others and you would just click to read. When Facebook came this all stopped. Now you ßcan access all your friends photos and join groups for anything and everything.

Instagram is also amazing. At first I got it and was like ok now what now I look several times a day. I think of it as a photo gallery. On this gallery you share everythsing about life. There are hashtags you can use to gain more followers. People can hashtag a disability or illness then you click and see all posts relating to that topic. Some follow from there and make great friends.

I have many friends on both Facebook and instagram.

No matter what there are great benefits to social media and I love it.


I think I am a friendly person. Often people like me have trouble making friends. With me it can be hard or easy. Most of my life as a kid, I was around people older than me, like my family and medical professionals. This resulted in me being more drawn to adults. I am still friends on Facebook with my old nurses, who became like a second family.

I had some good friends in primary school that I still talk to. I went to a school for mixed disabilities. In high school I would try to make friends with people who weren’t disabled, but often people wouldn’t want to talk. My poor hearing didn’t help. Nowadays my friends are a mixture of people with disabilities and people without.

I find it hard to catch up with people, because most live far away and lead busy lives. I find Facebook great for keeping in contact. I have friends all over the world. I play games on Facebook and have made friends through there and through my CHARGE groups.

I love all my friends and it is good having great people. My OCD can sometimes push people away and this upsets me, but the good ones always stay.

My connection to my CHARGE community

I think it’s great when people can connect to others similar to them. It helps others to see what one is going through.

I love my CHARGE syndrome community on Facebook and instagram. I love to help others by telling them what I’ve been through. Everyone is like family.

I am a board member for the Australian foundation. It is good being on the board. I get to connect to new families and organise get togethers.

Being part of my CHARGE community is very rewarding. Others learn about what life is like for me and I see how people do different things.

Every year there is a confrence one year in the USA the other somewhere in Australia or Newzealand. The confrences are amazing you learn so much from medical to education’ therapy and family stories. Professionals and families all come together to catch up and learn new things. It is like one big reunion.

We all celebrate each other’s successes and feel the lows. It is a great thing being part of a community that is supportive.


Every Sunday morning I go walking with a lovely group called Achillies sydney. Achillies is a lovely group of people who are visualy impaired and other disabilities. There are also amazing volunteers who give up a Sunday sleep in to walk or run with us.

I love being with this group of people they are so encoraging and kind. With their help I am now able to walk 2 kilometres with my walker. I have been in the blackbirds. I did the wellness walk and in March I will be in Orange.