Vision – Rett Syndrome – Monday 29th May 2023

Vision – Rett Syndrome – Monday 29th May 2023

When you are a child you have no way of knowing that how you see is different to others. As you get older you see others doing things you can’t do and you can’t understand why.
I recall going to the Penrith show when I started highschool (or it was Luna Park) and we went into this room that put a film on an entire wall.
As soon as it started I fell over (helicopter going over a mountain) and then I knew something about my vision too was different.

I also noticed that if someone turned the light off (night time) I lost balance and would freeze, even though I knew where I had been walking. I didn’t know why others didn’t have this problem either. It wasn’t a priority because back then I just wanted to be able to do things others did, I couldn’t even play hopscotch and felt like a huge goof.
When I found Rett Syndrome, my feeling was oh thank goodness I know what this condition we have is finally. We have a group we belong with.
But we were different. Sean was a boy and I could communicate. And unfortunately, I couldn’t convince the Australian group to give me an opportunity to explain our case.
Overseas was much more receptive, though they also had never encountered cases like ours.
I remember thinking, what is something that only someone with the syndrome could know that wasn’t yet apparent to the medical and science field connected to RS.
Then I recalled my need for vision and light in order to move and related what happens if the light is suddenly turned out. I couldn’t be the only person with the condition who needs vision and light to move. That was almost two decades ago and I do not know if they ever tested it, if they did I never heard.

It isn’t pleasant, so I recollect suggesting just to test it briefly and only once or twice. I wouldn’t say everybody with RS has this issue, but I would lean toward it being an issue for many. It helps to understand this for your child if so.
Fiona MacLeod (C)