Travel during COVID

One thing I miss not doing during Covid is having a holiday. This year I should be going to the USA for my CHARGE Conference. Insteqd it is now online.

Ir is also hard to travel within Australia because border restrictions can change instantly. This leaves NSW.

For these reasons I am hoping to take a driving holiday to the area my dad grew up in to see some extended family and also an old friend that i met in hospital many years ago.

I also want to explore the area as I have not been there since I was about 7. I want to be able to see more of the state I live in.

To go I either need a support worker or one of my cousins that can drive. I also need a car that will fit my wheelchair. I also need a place to stay, a good hospital in case my tummy plays up. This kind of holiday will be easier than an international or interstate holiday because no plane fairs required also I will be around people I know that can come help out if needed.

The hard part will be which way to go using NDIS support workers or family. Family could be better as they know me but I do like a break from them.

Happy new year

Happy new year. I certainly hope this year is better than the last but I think it will be as good as we make it to be. It will still have some bad points especially with the pandemic but I plan to try not to worry about what will happen.

I had a very relaxing Christmas and nye. I got lots of nice things and just relaxed.

My goals for this year are to try not to take everything personally. I need to not worry about everything so much.i hope to stay healthy and keep my tummy working.

I hope to be able to keep doing all the things that I enjoy. While COVID is still around I think it will be limited at times but I will stay positive.

A year in review

We are almost at the end of another year. This year has been different to other years for most but for me you could say it mirrored times when I was much younger.

When I was little I spent many months in hospital with my gut. We had to be careful as any illness could have an impact on my stomach.

So this year for many like me was quite normal but for others it wasn’t.

This year I missed out on lots of things but I was able to keep doing my Lifeskills programmes even during the lock down. I was able to enjoy respite with friends and go on outings with my carers.

I didn’t have a great year with my health but I have so far avoided COVID so for that I am happy. I am also stable for now.

I have not been able to go to my CHARGE conference this year but we did have an online catch up that was good fun.

COVID changed lots of things but it made people change the way they do things. Some of these changes were for the better but some changes made things harder. I had trouble with telehealth with my hearing and my Drs had to do face to face so this was hard in the beginning. My NDIS meeting was done via video conference which didn’t work. When technology doesn’t work it can be hard to do things.

Even though I couldn’t do many things I was at least able to do. Next year will hopefully be much better for everyone because I always believe everyone will have good days and bad days.

The value of the CHARGE community

This year the CHARGE syndrome association is taking a moment to reflect on the last 30 or more years association. It was founded in 1988 by a group of families including mine. We had our first conference in 1994.

Over the years we have supported many families in Australia,NewZealand and south east Asia with recourses and support.

To me being part of the community is an amazing feeling. In our community every one gets your situation and is very supportive. We are like a big family. Every meet up or conference is like a big reunion. We share in the highs and lows. We volunteer our time in different committees.

For me I love being w part of the CHARGE family. I have loved watching it grow from just a few families to the wonderful community we are today. Now every thing is online it is much easier to keep in contact which has been great in the time of COVID. we were able to have video meet ups where even regional families that may not attend our local meet ups can attend. We gave been able to develop and take an amazing online course all about CHARGE syndrome. We have also had support from the worlds top experts and to this day are still learning.

Thanks to all who have got us to where we are today. You are all appreciated and loved very much

Qualities for a good support worker carer

I know I have written about what makes a great service provider, but even though the provider might be excellent it doesn’t mean the workers are. The majority where I go are the best hut I have had some bad ones. So here is what makes me feel comfy with someone.

First any worker needs to understand disabilities but not just disabilities. They need to realise that though there are things we may be limited in a lot of us have other ways of doing things. Some might be non verbal but they will still understand. When talking they need to try to remember to talk in a way that is appropriate to the age they are working with. It is good to treat each person as the age they are not put them down by speaking as if we are babies.

A good worker needs to actually want to be there and not make people feel bad for needing help. I have had workers who seem to just be there for the money and would rather talk on the phone than work. I had a worker once who even though I said I wanted to go to the park, drove the van to her friends house I was ok if her friend were to meet us at the park but I don’t think I should have to change my outing to suit them unless there is a good reason.

A good worker also needs to respect the rights and wishes of their clients. I have seen staff gossip about other clients even in front of them. No client or worker is better than another we are all equal.

A good worker doesn’t have to share all the same interests but they should share some of them, and at least be willing to work with the individual unless of course there is a safety issue that means they can’t.

Workers also need to respect dignity. In some cases it may be hard to do so but when they can they should.

Even if someone doesn’t appear to understand treat them as if they do because some disabilities mean they have different ways of expressing themselves.

Always keep an open mind and be willing to learn. I love my workers and they are still learning even thought some of them have been around many years.

Being thankful

All my us friends are celebrating thanksgiving this week. For me I am thankful always so I am going to list some of them.

I am thankful for family who support me every way possible and love me know matter what.

I am thankful for my friends who help me always. They encourage me help me and are there no matter what.

I am thankful for my service providers who allow me to lead a normal as possible life and encourage me to be independent every day.

I am thankful for all the medical professionals who have cqred for me and many others. Life has been different this year but they still do all they can.

I am thankful for the simple things and the ability to be grateful for everything. We should never take life for granted especially after this year.


A couple of weeks ago I saw my gastroenterologist for a check up. She was happy to see me doing better. We have halved my lactulose and have agreed that for now I am stable. We are deferring my tube change till next year to reduce anesetic problems.

My hearing has completely gone in the right ear and I haven’t heard properly in over a week. I see the audiologist on Thursday and am hoping it is the hearing aid otherwise I may need a cochlear implant. My ear anatomy is wonky so we want to avoid as long as possible.

My anxiety and ocd is slowly getting better but I still have bad days.

My pain is doing better the new medicine is very hqrd to put down my tube so I don’t know if I am even getting any at all.

I am hoping to stay stable for a long time but time will tell.

NDIS round 4

Time flys when your having fun they say. Last week I had my 4th NDIS meeting. Those who say it gets better each year are right.

This year was different in that it wasn’t in person. My support coordinator organised a Microsoft team meeting wich didn’t work well. I couldn’t hear them and they couldn’t see me or mum so we had a Telle conference. We all used out phones. I found this worked much better.

We had a lovely planner that was able to go through everything and explained everything well. We found out my employment section is now in my core supports rather than its own section.

I also mentioned I wanted a holiday within NSW so we added that in as well as keeping the behaviour management plan and Auslan course.

I am happy we got a ramp approved for the front door and a hand rail for the walkway. The bathroom is also being approved.

I also got money to fix my wheelchair as the seating isn’t right.

I was very happy and surprised to see everything was approved the same day. And am looking forward to another great year. We can’t predict COVID 19 and the future but I know my service providers mum and my support coordinator will work hard to ensure everything goes smoothly for me. We also can’t predict my gut and health but for now I am stable and am doing all I can to stay that way.

General update

I hope I don’t jinx myself by saying I am doing better and have been out of hospital for almost one month.

I wouldn’t say I am all better. I still have pain but have started a new medication which must be helping.

They also increased my anxiety med which is helping a bit. I think I would say I am stable for now.

As well as the meds to keep calm I try to think positive thoughts like if I want to go to respite and have fun with friends I need to stop worrying about whatever I am thinking about. I find this helps also I try to remember to relax my self.

Drinking peppermint tea also helps to keep me calm. I also vent my feeding tube so the air can come out. I would say I am doing better and hope to keep it that way.

Staying positive in hard times

We all know this year is a very unusual year. There is a pandemic that is putting people on edge. Holidays are canceled and we are restricted in where we can go.

One thing I have found is that the more I worry the more likely my tummy will play up. so I am trying to relax more.

We all need to remember we can’t control everything but we can control how we react to certain situations. For me this is hard as I have anxiety and OCD but I do try hard.

One thing I find that helps is the calm app on the phone. It has different meditations that help to relax and calm the mind. Another thing is turning off from what ever might be upsetting and focus on something else.

It is always good to try to be positive but we also have to realise that it isn’t always possible because no one is perfect and we are all human.

My friends and family are good at helping me to be a better person but it is a long slow process and I think I will always work on it.