Another hidden feature in CHARGE is dental issues. With cleft lip and palate you get misaligned teeth and sometimes missing teeth. Reflux can cause plaque build up.
I have both of these problems wich has required a lot of work over the years. I have a tight bottom jaw and this makes it hard to clean my upper jaw has got a few funny teeth.
I had bands when I was little and a bone graft to fix the cleft in the bone.
They said they believed I would get my widsom teeth but at a funny angle and possibly late. A couple weeks ago one started erupting so now I have to see a surgeon one is coming down ok the other two need to come out.
I have written about what CHARGE syndrome means as an acronym but it also has many hidden features. One of these features is anxiety OCD and other behaviour problems.
While many people look at me they see a smart intellegent girl. What some don’t see is the underneath. I have mild anxiety and OCD. I am prone to melt downs. There are triggers.
In CHARGE people say look at what is triggering it but i feel because I come across so well people dont relise. For me my triggers are pain mostly gut pain wich ive had all my life, heat, a change in routine, people telling me off or thinking they are and sometimes i just am not sure of the reason.
A melt down for me usually is yelling crying and hitting my self. The problem i have is I try to say it is a part of my disability. It is something in my body thats not right but people dont get it and tell me to stop blaming it on my disability.
To stop it from happening i try to relax. Having neuro feed back has helped alot. I start my 3rd lot of ten sessions this week we are hoping to get to a point where i wont need it. The brain will hopefuly be able to one day maintain the new pathways by itself. Other things that help are working out what may of set me off and avoiding it.
With my tummy pain it is hard to avoid but i try not to eat everyday as i get sick easy. With the heat i stay in the air con or in a cool place. Drinking cold water and swimming helps to. If a routine is going to change i need to be forewarned or someone needs to explain why. With ppl telling me off it is hard to avoid but I try to be less sensitive and be good.
I obsess and fixate on things easily to that can be hard for those around me to but I am much better now days.
i had a good educatio but it was set back with loads of drs and hospital stays.
For primary school I was in a special needs school with people with physical disabilities which later became a mixed disability’s school. This was a wonderful place. Each class had 7 students one teacher and aide. We had structured classes where we were taught at our level. My teacher was a wonderful lady who looked after me well. There was a pool where we all swam and we had physics and an OT. In time the work got to easy and they and mum felt I could be challenged. The school also closed and moved further away.
with help from my primary school teacher mum felt that while I was good I still needed support so they decided that a support unitin a mainstream setting was perfect for high school. I did some classes in the unit and some in the mainstream. A teacher or aide always went with me to main school classes. They would help me with copying board work, staying focused and any physical things I needed. I also had a teacher for the vision and deaf teacher come and help. My hearing teacher would also work on other skills like catching up on missed work, doing listening excersisesshe also tested my aids and would tell mum if she was concerned. She also would go and pick up work and bring it to me when I was in the hospital. My vision teacher was the same but she would organise special paper with dark lines for writing.
In the support unit I did life skills type things as well as regular classes. There were three classes but as I was going to to year 11 the school changed to only year 7 to 10 so I had to move with everyone else. I was lucky some of my teachers and aides came to.
I found the new school hard at first because when I got there the unit was still being built and the school had stairs everywhere. I ended up getting used to it and enjoying my time there. Doing my HSC I was given extra time and room for breaks.
I am fortunate I had a good life