Some people have a hard time with being different. I think it’s natural, we are all human.
For me I do find it hard at times. I see all my friends eating and I’d love to eat, but it makes me sick. When I am feeling this way I try to remember the things I can do.
I can read, I can write, I can have intelligent chats with people.
I am mostly a positive person, but I tend to worry too much about what people think of me and obsess on it. This pushes people away. I know it can happen to lots of people, I think because everyone wants to be perfect and we aren’t.
I have always been overly sensitive and family members health issues hasn’t helped. I have to do something to avoid the things that trigger my OCD, usually by doing something different. For example if I’ve been on my computer to long, I’ll go and read.
To relax I love to swim, read or listen to nice relaxing music. The heat makes me very uncomfortable. I also get antsy with a change in routine or if I think someone is annoyed at me.
Relaxing helps me to stay calm.
I am lucky to lead a fairly good life. I try to keep my self occupied most days. Monday’s and Wednesdays
I am lucky I lead a fairly good life. I try to keep myself occupied. Mondays and Wednesdays I work at AFFORD. AFFORD is a sheltered workshop for people with different disabilities. AFFORD has many different services. I go to the factory in Marickville. I do many things such as labeling and packing boxes. I have been there since 2006 and quite like it, though at times the factory gets very hot and I need to go and cool down.
Tuesdays, Thursdays and Fridays I do Lifeskills at Northcott. At Lifeskills there are around 20 clients, all with physical disabilities and all are my friends. Each day we start with excersises, then after morning tea we do different things. Tuesday I do cooking and then art. Thursday is my swimming day. I love swimming; I feel relaxed in the water and I can let go. Fridays are my outing days. I love Lifeskillsl, they help me in so many ways. I also attend Respite at Northcott once a month. This gives me and mum a break from each other. I get to go with my friends I’ve known for years from Lifeskills and at times make new friends too. I love respite at Northcott; everyone has fun and we all love being with each other. I used to attend another respite but did not like it as much, as I didn’t really mesh well with the people there. I felt this would make me act out. The staff were lovely, but I felt they thought everyone was on the same level, in terms of disability, which would lead them to gossip about others in earshot of me. I felt that they thought, “You’re deaf, you won’t hear me”, but I did. Once they had a meeting about another client and sent me out into other room, but let the others stay. This made me feel that they were talking about me; all clients should be treated equally, no matter the level of their disability. Northcott is nothing like that. We are all equal there.
On weekends I go out with mum and my family. Every second Saturday, a Northcott worker takes me out for a few hours, and we go anywhere I want. We use trains, busses, the carers car, anything that works.
When I’m home, I like to go on my computer or ipad and look at Facebook. I look at my group chats and relax. I also love to read and swim, as well as take a good bath.
Life is very good and I enjoy all the things I do.
Once again I am preparing to go to the CHARGE syndrome conference in America. It gets me thinking about how it can be more complex for someone like me to travel than normal people. Not only do I need flights and accommodation, I also need to make sure the place I am going is accessible.
The CHARGE conferences make accommodation easy; you can stay at the conference venue with a special fixed rate. Usually the venue is in the suburbs of a fairly populated city and families spend time before or after exploring the area.
I did this in the USA twice and it was a great experience. I have also been to Fiji, Hawaii and New Zealand.
I have also been around Australia many times. I love seeing new places and people. As always, when going anywhere you need to know where you want to go. Then can
you work out everything else.
Some countries have rules about what you can and can’t bring in and out so I always get a Doctors letter for my medication. If you can, sometimes it’s a good idea to get large items shipped ahead. We used to send my formula to my aunty in New Zealand, so we didn’t have to worry about how to pack it.
We also always take extra hand luggage; you never know what will happen.
For my next trip, I am going to be at the confrence hotel. I am taking one of my support worker from my Lifeskills program. We will get to look around Dallas, see the sights, as well as attend the conference.