Watch me!

One of the benefits of having a blind child is that the endless “Watch me, Mummy!” can be faked.

“Yes, yes, I’m watching darling!”

Except I’m not, I’m looking down at my book/phone/work as one does when one is supervising small children in the garden.

“You’re not watching!”

Huh?

“I can’t see your face!”

How much vision she has is still a source of mystery to me.  We were in full sun and she was moving confidently between light and shade and she could see if my face was turned towards her or not.  Partial Achromatopsia?  She still hasn’t let her Ophthalmologist actually measure her visual acuity.

Statement approval

Great news – Charlotte has a statement from the local council.  She is going to be getting the maximum hours per week of classroom support which equates to a full time classroom assistant dedicated to her learning.  It is going to be wonderful for her progress in school, she is clever and she probably has been held back in the classroom by her vision.  The school are now due to recruit someone for her and I can’t wait to meet them.  It is going to be under review after two terms but hopefully it will be able to become longer term and might last her through her primary years.

She is making great progress in her independence.  I'm sure that having an older sibling really helps.  She sees her sister going to “drop-off” birthday parties and playdates and has insisted that she wants to do the same.  Luckily the last two parties were ones where her older sister was also invited so it was easier to leave the two of them together.  But she has been getting on fine on her own.  It is amazing what a difference that first year of nursery makes to their birthday party participation.  In September, she was lying on the floor, crying; now she is rushing off without even saying goodbye!

She is scooting to school every day.  I have to give her a lot of help with bumps in the pavement but on the flat surfaces, on a familiar route, she takes off in front on her own quite happily.  I would like to get her riding a bike some day.  It will be a good source of mobility and independence in adulthood, if she can be safe in traffic.

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!