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
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.
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.
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.
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.
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.
I am getting ready to end my 3rd NDIS plan and work on my 4th plan. This year will be different for me and many others because of COVID and the precautions needed to be taken to stay safe.
Every year they say we have to use all the money allocated or you will get less next round. This year though this didn’t happen so hopefully they will understand.
My plan expires at the end of October and I still haven’t got a meeting time. I know I didn’t use all my money so I am using it up by having more respite and outings. There are some things though I couldn’t do which i still want to do next year
Another thing that is hard with COVID is I may not be able to attend the next CHARGE syndrome confrence in the US because international borders may be still closed and the conference may be canceled to make sure no one gets sick. So I want a holiday but am unsure where I can go.
For my next plan i also want to continue with everything I am doing now and do the things I couldn’t do this year.
One of those things was an AUSLAN course so I can communicate better with signing people and the other was a behavioural management plan to help people who support me know how to best help when I get anxiety and OCD.
I hope it will all go well and I won’t have to wait to long for my new plan
My gut and bowels stopped working again earlier this month. They have now involved the neurology team. A lot of people with charge have Neuro issues including me.
Neurological type problems don’t just involve the brain but the nerves all over so for me they are starting to believe that this plays a part in my problems.
They tried nausea meds which gave me terrible seizure like activity that required tests. The tests came back normal but when I was little I did have them.
Some people need meds to help control neurological problems but I am lucky i just need my meds for reflux and anxiety.
For me there are no obvious neurological answers to my tummy but they think there is some kind of nerve involvement that no one can see and this could be why things slow down and stop working. Many people with Charge are the same as me.
Sometimes they can remove parts but they cant remove everything so they find other ways around it.
Some things that have worked for me are cranial therapies like oestepathy kinesiology and also massage to loosen everything up. i find if I miss a few treatments everything doesn’t work as well.
Every year on the 21st of September the CHARGE syndrome foundation hosts a day to remember. This is international day of kindness. On this day we remember those gone to soon and it is an opportunity to something nice for someone.
2020 is an extra special year because in the time of the COVID pandemic many have worked very hard to keep everyone safe. So I want to acknowledge some of these people who have helped me this year.
First there is my wonderful family and friends who love me unconditionally and put up with me in my worst times.
Next there are my amazing carers and support workers at home and at Life skills and respite. These lovely people support me to be a better person and have helped me have a life during a lockdown. Northcott gave me the opportunity to see my friends online and do something nice. My personal carers take me out and help me at home.
I also am very thankful to my Drs and nurses and all the staff at hospital wheather its a radiologist or the wonderful people at the entrance,cleaners porters and the rest they are truely amazing.
In this time it is good to tell people you appreciate them. You never know how much better they will feel. I love all the people in my life and don’t tell them enough how i feel.