Last Friday was jeans for genes day. I actually have a genetic disorder. CHARGE syndrome is partly a genetic disorder as in there is a gene but not everyone will have the gene
It is very complex but it isn’t hereditary and is like a pot luck kind of thing. It can also be diagnose clinically. I am clinically diagnosed as there was no gene when I was born.
Over the years as more has been discovered they have changed the way they diagnose it but basically you need to have at least half of the features
I find awareness is a wonderful thing for many different things. The more we learn the more we understand.
I thought I would give a life update. I am still doing really well with my health. I did have a couple of winter cold things but I have managed to stay fairly good. I even put on a bit of weight.
I am also back to normal with my daily activities after two years of COVID madness. I am very happy with how things are and am happy. My anxiety and other things are less to.
At the weekend mum and me went to Uluru for 2 nights. We wanted to go somewhere different. Uluru is a big rock in the centre of Australia. The rock is a very special sacred place for many indigenous Australians.
On Friday morning we arrived at the airport where there was a huge line for check-in and people everywhere. After checking in we boarded the plane
When we go there we checked into our room and relaxed. In the evening we had a sunset your. The colours were amazing over the rock. There was food and drinks and we talked to the other people while watching the sunset.
On Saturday we went on a sunrise your. Again the colours were amazing after some breakfast we went for a drive around the rock and a walk to a water hole. We also saw a cave which had paintings it was beautiful. The rock is so big and amazing. No one can climb uluru anymore but you can walk around it. The paths are red and very sandy so hard for a chair.
After that, we had a walk around the town centre at the shops and then relaxed in our room. In the evening we did sounds of silence dinner with the field of the light tour. The dinner was a three-course meal and the lights were an installation of amazing lights We listened to a didgeridoo and someone told us about the stars we see. Being in the middle of no where the sky was bright with stars not like in the city where all the lights hide everything.
On Sunday morning we went on a helicopter ride over the rock. It was amazing. We then went to the airport to come home. Our plane was delayed and we got home at 10 pm.
The weather was beautiful lovely warm sunny days with cool nights. I would love to go back and explore more of the area and look at the area.
Ever get the feeling like you are talking to yourself? I feel like that when I post in here lately. So my question is are people reading? Are you enjoying it?
I write the blog to share my perspective on things, get things off my chest and also spread awareness about CHARGE syndrome. I love to know people are liking what I say and are finding it interesting.
For me respite has many good benifits to being in respite. First I get to give my mum a break and some space.
Not only to I get to be with my friends but I get to practice giving people space and doing my own thing.
I also learn independence and get to gain new skills or improve on old ones especially social skills. I have great support workers who help me improve every day.
The best thing about respite is that it is the same house as my life skills programme. This means I can just stay in the same place
July is Disability pride month. It is a month where we educate people about our disabilities. We need to show people that we are all still people with feelings. We just can’t do things the same way others can.
People with disabilities just want to be accepted. I find most people are very accepting and good but there are still some that will not understand me or how to interact with me and my friends.
I think there are a few simple steps everyone should keep in mind when meeting a disabled person. First always assume they can understand. Someone might be nonverbal and communicate but they might be able to carry on a long detailed conversation. Also remember to take the time to get to know the person.
Another step people need to take is open to learning. For me my syndrome is fairly rare so the more I tell people the more aware they will be. When you learn you can then help to inform others
The last tip is to remember that we all have feelings and thoughts too. Always listen and be open to whatever you see. I for one love being with friends and family but some people prefer being alone.
No matter what the disability most of the people I know are lovely, kind, genuine people who love to get out and have fun.
I find one of the hardest things for many people especially those with disabilities is accepting themselves. I find this is true because I have struggled with it.
For me to accept myself and love myself it took time and I still have my days. Firstly I surround myself with people who understand and help me to be a better person.
I also try to remember that we are all unique and what makes us amazing is the qualities we have. I try not to let other peoples opinions get to me.
One big think I did was just learned to be a better more mature person and this helps as I don’t get frustrated with myself as much.
Over the last 2 years, no one has been able to travel because of COVID restrictions. Many people stuck to seeing the state and country they live in. As an Australian person, I have a few places I love and a few I would love to see.
I would love to see more of the state I live in. NSW is a lovely place and I would love to explore more of the regional areas especially the south and central West. I have family up on the north coast so always love to visit there.
I would love to see Victoria more. I have been to Melbourne many timesbut would love to see thegreat ocean road and all the other regions.
I would also love to see more of South Australia, especially the part that joins the WA coast. I have some special friends in WA and it would be amazing to visit them.
I love the Gold coast in Queensland and I want to meet my little cousins in Brisbane. I also want to go to the Daintree rainforest. I want to see the Northern Territory and the place where mum was born.
I love Tasmania and I am always happy to go there.
If I could go anywhere in the world I would go to Europe, Asia Pacifiic, USA, and the UK and I would love to see all the different countries and experience the different cultures. I particularly want to see France, Italy and Greece.
France has some beautiful gardens and spots I would love to see. I have always wanted to see Monets gardens. We have a few Greek friends and I would love to see where they are from. Italy is another place I would love to see because I have seen beautiful photos.
In the Asia Pacific, I would love to see Vietnam, Cambodia, Nepal, Japan and the Pacific islands. I would like to see Vietnam, and Cambodia because they have amazing places and scenery. They also do amazing textiles and homewares. I would love to see Japan for similar reasons but also the cherry blossoms. My favourite carers are from Nepal so I want to see their beautiful place. I love the beach and swim so I would love to see the beautiful Pacific islands. I also love the generousity of the people in Fiji and Hawaii so I feel like I would be content on the other islands.
In the USA I want to visit most of the states especially the ones where I have friends. I particularly want to go wherever my CHARGE conferences are so next year I am planning to see Florida.
In the Uk, I want to see Ireland, England and, Scotland I have English and Irish ancestry so want to see them plus meet some of my CHARGE families there and in Scotland.
There are many different types of hearing aids. Some are implanted and some are on the ear.
Yesterday, I got an update on my superpower Baha hearing aids. Every few years as technology improves they need to update.
I am unable to have implants because of where my veins are in my head so I use a soft band.