New glasses

I finally picked up Charlotte's new sunglasses from Moorfields. 

They have done a great job on getting the colour really dark.  It is not red so much as a very dark brown.  When she put them on, she was peering around the room, appearing to look at things in a whole new way.  I do hope that the prescription increases her vision and her visual interest in things.

The only issue with them is that the lenses are much heavier than her plastic sunglasses.  They slide off her face and I don't think she likes wearing them that much.  Hopefully they will fit her a bit better as she grows.

Monoculars

I'm fascinated by other blind people.  I can't get enough of watching them and trying to glean information.  We went bowling recently and witnessed another low-vision kid there.  He was much older than Charlotte, maybe 8-10, and he was using a monocular to see the scoreboard screen.  He wore it on a string around his neck.  I suspect he had Ocular Albinism because his hair was very fair.  I watched him for a while, he was with a group of much younger kids, helping them with their balls and checking the scoreboard for them.  I'm not sure if he could see the pins or not, he didn't use his monocular to look at the end of the lane so I decided that either he didn't need it or it was no use.

The most interesting experience for me was the different reactions of those close to us.  It was my mother-in-law who pointed him out to me.  Then she said, "He's having a terrible time."  I watched him for a bit and then decided that he was managing extremely well.  I guess she meant, he is having a terrible time seeing the scoreboard without assistance.  It is so interesting how we could have had two totally different points of view about exactly the same situation.  Perspective is everything.

I really wanted to go over there and ask him all about his monocular: where he got it, when he started using one, how it helps him, etc.  But it would have been inappropriate so I didn't.

UCL Research

University College London have a page covering their genetic research for retinal diseases.  They have updated for Achromatopsia CNGB3 and it looks like they are planning on moving forward with a clinical trial.  I am not certain if this is the same one as Moorfields are doing.

Achromatopsia link here.

Statement application

The school have asked me to put in an application for a Statement of Educational Special Needs for Ch.  I'm happy to do it because I think she really would benefit from some 1:1 support in the classroom.  She is clever but I think many of the concepts pass her by because she can't comprehend them visually.  Plus, what child wouldn't learn better with 1:1 support?

I've sent a letter to the council requesting that they assess her for a statement.  Now they are in the process of gathering information, they will contact the school, maybe her doctor and then make a decision.

Apparently it can take 3-4 months so I am not expecting a quick answer.

In other public services matters: since she turned 3 she is eligible for the mobility component of DLA and her rate has duly been increased.

CNGB3

...is the gene that is causing Charlotte's Achromatopsia.

This is the most common gene AND the one that they are in the process of planning a clinical trial on at Moorfields.

Good news - it's the right one to have!

School love!

I have to write a gushy post about how happy we are at the girls' new school!

In fact, it is more about her older sister than Charlotte.  We had a difficult school year last year where we thought we had sent her to the best school ever.  There is no such thing as the perfect school but it turns out that this particular one was very pushy, very academic and results-at-all-costs.  Thanks to Charlotte's low vision teacher, we found this one, they could take E at the last minute and now the two little girls are happily at the new school. They are so caring, so mindful of the girls wellbeing, so intent on the best possible pastoral care that I can't imagine they will get anything but the best from all of them and shape them into marvellous human beings.

The funniest part is that Charlotte will end up looking after her big sister!  She told me that next year they will share a playtime and can play together, when I relayed this to Charlotte, she said, "No, I want to play with my own friends!"

Prescription lenses

Charlotte has been prescribed lenses now, +4 in each eye.  After finding the Noir eyeshields online and ordering them from Misouri, I was quite worried about not getting her the right type of lens tint.  Everything I've read from adult Achromats has said that their childhood prescriptions were never as useful as dark sunglasses.

I went to Moorfields to attempt to get the prescription filled there.  I know they customise lenses and also have great frames for kids.  As we are patients there, I thought we had a pretty good chance of being seen.

They were utterly superb in their service!  I feel so fortunate that we have the most marvellous healthcare for Charlotte, they checked the tint, offered to custom tint to try and match the colour, had an exceptional range of frames and were so patient with her when she was being unco-operative.

I can't wait to pick them up and see how they look...