MyGuide with Guide Dogs

I have finished my volunteer training with Guide Dogs and I have been matched with my first My Guide client. We are going to meet on Fridays just after lunch and mainly go out for walks to give her an opportunity to get out and about.

The service is pitched to volunteers as one that helps clients meet their goals. They might have toned it down a little bit now because I've noticed that most of the clients appear to want to use it as another means of getting out and about. This is a fine goal, and one that I am happy to help out with.

Volunteer training for Guide Dogs

I've been getting ready to work as a volunteer for Guide Dogs UK, as a sighted guide. Although most people know Guide Dogs by their obvious association - guide dogs - they actually provide all manner of services to blind people, including many different types of mobility service.

One of these, My Guide, is the service for which I am in the process of getting ready to volunteer. It matches a blind person with a sighted guide (me) and we meet for 3 hours a week to get out and about and help the person meet certain pre-agreed goals.

I've completed the application, phone interview, reference check, DBS check, online training and the MyGuide training, I am just waiting to attend a half day Safeguarding training before I can be matched with someone and be their guide.

I have wanted to do some volunteering for a long time, and this is an organisation that is close to my heart. Being able to volunteer for just 3 hours a week is great, because I don't have a lot of time to give. I would like to do more, but at the moment, this is about what I can manage. I am planning on squeezing it in on a Friday afternoon.

I'm both nervous and excited about doing this. Nervous because I'll be working in a one on one situation with someone that I may not have much in common with, or may not even like very much. I'm hoping that it won't be the case that I would be matched with someone really grumpy, or depressed, or so elderly that they can barely walk anywhere. But, if I am, it will still be good to do it, and to help them out. People are people and I can work on my social skills as well as feeling good about doing someone a good turn.

Disneyland (CA) - Accommodation for Blind People

Picture shows Mickey's Fun Wheel at Disney's California Adventure park.

Disney used to be famous for allowing blind people to jump to the head of the line. Boy was I keen to experience that with Charlotte! But they have stopped the practice and now blind people have to queue like everyone else.

But Disneyland did give us a few perks when we asked nicely for them. These all took the form of preferential seating for live shows, of which we saw three during our four day visit in California.

Here’s what we saw, what we did and how it all worked.

Fantasmic at Disneyland

Fantasmic is a nightly show in the Disneyland park. The week we were there was expected to be a busy week for the show because it was the first week that annual passholders had re-entry to the park after the summer high season and Fantasmic had only re-debuted a few weeks ago.

We used our Magic Morning (hotel guest early entry) to queue for spots at the Frontierland rope drop. This was so we could get Fastpasses for the 9pm show. Perhaps it wasn’t best use of our first Magic Morning, but we did go straight to the ticket machines (escorted there by “Cast Members”) and got our tickets. That’s step one. To get any special accommodations for the show, make sure you have a Fastpass for that particular viewing.

When we came back for the show, at about 8:20pm, we approached one of the “Cast Members” (I can’t bring myself to drop the inverted commas!) who was manning the roped off queuing area. I told them we had someone in our party with a visual impairment and asked if there was any special accommodation they might be able to provide. First they confirmed we all had Fastpasses, then they seemed to get a bit confused about what sort of accommodation to provide. They are well set up for wheelchairs, but an ambulant disabled person was a bit perplexing. But they were good about it. I just asked if there was anywhere that we could stand to watch from closer so that she would have a shot at seeing the show.

They directed us to the wheelchair queue for the show. For reference, the main queue is on the dock for the Mark Twain Riverboat, and the wheelchair queue is just to the left of this, when you are facing the dock. It feels a bit weird to be standing around with the wheelchair users. It’s times like these I think we should carry her cane with us. I told Charlotte to “act more blind” and she told me she was going to act exactly as she always did. Good girl!

After the rest of the Fastpass audience have gone to their section, they direct the wheelchair users, and their carers, into a separate viewing area. The area is to the side of the main stage, but right at the edge of the water. The wheelchairs line up along the railing and the carers stand behind them, leaning on another low railing. Disney insist on the space in between being left open, and are very strict about keeping non-wheelchair users off the front railing.

Overall, it was a good viewing spot, better than we would likely have got in the Fastpass section. The girls could see over the heads of the wheelchair users, and we got to lean / sit on a low railing. This is very welcome when you are waiting 30+ minutes for the show to start. The side view was restricted because it was far to the side, but it was nice and close to the water. We could see Mickey on the island, and the dragon, but the main action there was too sideways to feel very powerful, and much too far away for Charlotte to see anything. What we did have a good view of was one of the side screens. Much of the show is projections of favourite movies on to a screen of water. They have three of these screens set up, and the wheelchair viewing section is right in front of one of the side screens. Charlotte could see this pretty well. Some of the action is on barges that move along in front of the audience so we had a good view of the barges as they went past. Some of the best moves performed by those on board are saved for the premium viewers in the centre, but it was still a good vantage point.

Conclusion: well worth asking for this accommodation at Fantasmic – for the opportunity to lean on the railing alone!

World of Color

This is the nighttime show at California Adventure park. With dessert packages selling for $80 each just to have a central seat and a plastic box of sponge cake and grapes, I figured this was a show not to be missed.

As for Fantasmic, I set off to get our Fastpasses early in the day. There wasn’t such pressure for passes for this show, quite likely people were keen to see Fantasmic as it had just re-opened. Lucky for us who wanted to see World of Colour.

We returned for the 9pm show at 8:15pm and went to one of the cast members who was manning a roped off area. I asked her what accommodation they might be able to offer for a visually impaired person. She had no idea, but she asked her colleague, and together they went off to call their manager. He was a lovely man who asked us what we needed. I explained that seeing up close was the best possible solution for us, and said that otherwise, we were fit and healthy. He asked if me minded getting wet and when we said it was fine, he took us to the ‘WET ZONE’, plastered with signs warning people that they might get wet. I think we might have been able to walk up near to the spot we had for the show, but bless him, he took us to a small roped off staircase, marked ‘Reserved’ and told us this area was entirely for us.

We felt like total VIPs! We reclined on the stairs, with a (close to) front and centre view of the water. A nearby Cast Member offered us warm hugs and reassured us that the wet zone might be a bit of a mist of spray, rather than a half hour downpour. (It was somewhere in between.) We snapped and connected some more glow sticks, and got ready to watch the show.

Then we experienced our own taste of the famous Disney Magic. A security woman came up to us and sought out Charlotte. She told us that her colleague, who showed us to our “seats” had told her that this child was to start the show. She gave Charlotte a magic torch and showed her a button to press. Charlotte was to hold the torch out towards Mickey’s nose on the Ferris Wheel and press the button. “Not now! You don’t want to start the show now! When I tell you, I’ll come back in 10 minutes and tell you when. In the meantime, you practice with the other button.” She just made it back in time to count Charlotte down from 10 and she started the show beautifully. Sob! During the show, Charlotte told me that it was the most beautiful thing she had ever seen, and she couldn’t believe that she had made it all happen with her magic! We were lucky enough to see the man the following day, so I was able to go up and thank him for making it so special for us.

Frozen at the Hyperion, California Adventure

The third show we saw was the stage musical of Frozen in California Adventure park. We arrived just under an hour before the start of the show. They have a ‘holding pen’ where all the audience waits, in their selected section: Orchestra, Stalls, Balcony. I was going to go for the Orchestra section, but thought it was worth asking one of the staff who was there at the queue. She was happy to take the decision straight away that we should go through the disabled seating area, saying this queue got let in first and were able to choose their seats on arrival. Happy days! There weren’t too many others there, I didn’t even notice the usual array of mobility scooters. Once they let us in, we headed straight for the front row and Charlotte had a great view of the performance.

Dark rides

Another quality that Achromats, in particular, will appreciate is that Disney has a large number of rides that take place indoors, usually in very dark areas. I presume it is due the cinematic heritage of the company, and the fact they are recreating parts of their films. We didn’t spend much time in Tomorrowland, and Space Mountain was closed during our visit, but that section seems to me to be almost entirely indoors. Fantasyland has lots of the kid story rides that take place indoors, we went on Mr Toad’s Wild Ride, Snow White’s Scary Adventure and Pinnochio’s Daring Journey. Adventureland has Indiana Jones, Pirates of the Carribean plus the Tiki Room while even Splash Mountain is more indoors than out.

Overall, our Disney trip was very successful. As a family, Charlotte’s eyesight doesn’t really limit us and we typically carry on and do whatever we choose, with Charlotte joining in too. People don’t realise she is blind and we always watch her closely to her to make sure she doesn’t trip over kerbs and such. We didn’t go there expecting special treatment, but it was great to get a better viewing position at the three shows. She still liked the rollercoaster best.

Swimming Goggles

Charlotte got some new swimming goggles today.

The lovely dispensing optician at Great Ormond Street helped us out with them. I asked about goggles when we were there for glasses. I baulked a bit at the price (£120), but then decided that I should go ahead and get them.

They are made up to her prescription and custom dyed to the full light transmission factor that we want. I think these are 40% with a grey tint. Charlotte doesn't like a brown tint because she says it distorts the colours. I don't understand, but I don't question her judgement of what she can see and what she likes.

One of the best things is how the rubber edges come all the way up to the front of the lenses. Normally, the glass piece is flat on the front, and wraps around the sides towards the strap. These are flat on the front and then the side piece is solid. No light transmission. It might make her a bit tunnel vision, but should be great for bright conditions. I think she really likes how dark they are, but we won't get a chance to test their effectiveness until the summer. 

Hope she doesn't lose them at school!

You can see how wraparound the rubber is here.

White Cane Assessment

Charlotte has had an evaluation for a white cane. I set it up because I want her to have access to all the tools that she might need but I think I was also hoping that the verdict would be: "She's fine, she doesn't need a cane." 

Not so, she does qualify.

We took her to an area with a grassy bank, a step and a pathway; very uneven terrain and quite a steep slope. She tried out a little cane - which was actually too large for her - and she got the hang of it quite quickly. She seemed very pleased to have a new piece of equipment and she also completely understood how it could help her navigate the ground.

The instructor is going to get back in contact and arrange some times for training in the streets around  our house.

I really worry about this step for us. It feels so huge. It is such a visible marker of blindness. People don't see the person, they only see the cane. I want them to know Charlotte first, not her equipment. It is a tool that I want her to have if she needs it, but I really hope that she won't need to use it.

Will this make her less physically adventurous? What about riding a bike, or going for a run? How do you those things as a cane-user? She jumped down the front steps this morning, will she suddenly stop doing that because she wants to feel the surface all the time?

But... it was clear, from the moment she had it in her hand, how much it would help her on uneven and unfamiliar ground. She was so confident with it. When she handed the cane back to the instructor she immediately reached for her hand as a replacement. I was struck by the difference.

I think I need a bit of an attitude adjustment. This is not a marker of blindness, this is a tool which will give her greater independence.

Movie Review

Verdict: who knows?

Charlotte's first trip to the cinema was not a great success. I admit, I had high hopes. After reading a few adult Achromat comments about how they loved the movies, I was expecting that she would be enthralled by the size of the screen and the darkness of the surrounding room.

I let her choose the row we sat in. We had row B. Actually, I lie: she wanted to move forward one more row but I drew the line at the second row. I think she wanted the front row because she thought someone might sit in front of her.

She tried looking at the screen with dark glasses on and off, and eventually went for off. She often chooses to wear them at home when she is watching TV. She seemed to see fine but she was completely bored less than half way through. She had one particular character that she liked so she pointed her out to me every time she came on screen.

I guess she just didn't like the movie.

Press Clippings

More Achromatopsia in the news today. I am in danger of turning this blog into a clipping service!

Local newspaper article about two sisters living with Achromatopsia. This previous article about one of them is better written and is, to my mind, more interesting.

This week, the BBC featured research into retinal ganglion cells: Drug lets blind eyes see light. It does not refer to Achromatopsia but includes a magnificent picture of the retina.

Gene Therapy in The Economist

I always find it exciting when I see an article on gene therapy in The Economist.

Yes, they like to report on new technology early, but they are also not going to risk their reputation on reporting unpromising studies or research.

The article, Gene Therapy: Ingenious, fixing a body's broken genes is becoming possible, published this week, is a general gene therapy article but the first two success cases mentioned are both related to blindness. They don't reference any Achromatopsia gene therapy, but report positive results for choroideremia and Leber’s congenital amaurosis. Additionally, both studies appear to have the same delivery mechanism as would be used for Achromatopsia, although the article is not specific on method used in the first case. (I also like the picture accompanying the article: clever and cute.)

I always feel a surge of optimism when I read these types of articles, I start to believe that there is hope that Charlotte will be a recipient of treatment. I don't know when, or how what difference it might make but I like to know that there are people out there working on this stuff and there is money being found to pay for it. All of my previous hesitation around such a new technology still applies but it is nice to have a little boost once in a while.

Child Views

I have to share this. It is an transcript of interview with Charlotte where she has been asked her opinion about school.  I can just imagine this conversation unfolding and her answers are so adorable!

What I feel about my class
"I like it because it is higher and closer to Year 1."

I like ...................
"I like playing with my friends. I run around in the playground and run after my friends. 

I don't like ..............
"No"

My friends are ...............
"I like them because they are fun and they play games with me."

............... helps me
"No one helps me. Sometimes teachers help me when we set the tables at lunch time."

............. listens to me.
"Everyone listens to me."

I can do this ..............
"I am best at playing and drawing."


Lucky her, I wish everyone listened to me!

Fireworks night

I hope all the achromats in England had a good time at Bonfire Night this week.

We took Charlotte to her first firework display and it was so gratifying to watch her sweet little face lit up by the fireworks as she looked up and took in the display.

First Magnifiers

I'm constantly amazed, and humbled, by the generosity of the NHS. If Charlotte needs it, she gets it. We were back at Great Ormond Street Hospital this week for an appointment for magnification devices and visual aids. I had been expecting that we would purchase these for her, but they were all freely given.

This was her first appointment of this type. At 4, she is just old enough to start to make use of them, including understanding them and looking after them. Plus, at 4, she has started her first year of school.

First up is this little beauty: Coil Bright Magnifier, 5850 (the magnification is not shown). She was able to use it immediately, putting over a page and identifying the objects underneath. It is sturdy and she can handle it very easily, she just slides it over the page. I think we will leave this one at school where she can use it for looking at detailed pictures and maybe letters and numbers. It would not be great for reading, it would be a pain to slide it between the lines, but I believe older children use them for reading maps and anything where the details are concentrated in one place.

She was also given this stand magnifier to try out: Coil Stand Magnifier, 5123 (7x magnification). She liked this one better than the dome, perhaps because the magnification is strong and maybe because the dome adds a lot of light to the image underneath. (She kept her sunglasses on for the duration of the appointment, including all eye tests). I'm a little concerned about the durability of this one so I think we will keep it for home, rather than sending it to school. Tonight, she used it to explore the back cover of a Mr Men book, getting a good look at each of those tiny Mr Men.

This is my personal favourite: Eschenbach, Microlux 4x13 Monocular (4x magnification). It is teeny-tiny, light as a feather, has auto-focus and fits into her little pocket like it isn't even there. This could be the thing that she wears on a string around her neck for the rest of her life. Right now, she can use it ok but she doesn't seem to find the world fascinating. It works better for much longer distances, it doesn't focus within a few meters. I love how it folds even smaller by pressing the sides together.

She was also given some binoculars to try but she didn't seem to get the hang of them. They might be useful when she is older. Magnification is kind of an abstract concept, when you think about it. You look through a lens and the picture appears closer, but it isn't inside the device, when you take the device out of the way for a closer look at the object, it recedes and you can't see it properly. So strange!

She had her eyesight tested again. The measurement of her visual capabilities has been an ongoing curiosity for me, so I was really pleased when she co-operated so nicely and was willing to identify smaller and smaller pictures held at a distance. Eventually, she couldn't make out what the pictures were and she kept trying to get off the chair to get a closer look. Her range came out at 6/38, which is far, far better than the 6/60 cutoff for Severely Sight Impaired/Blind. Apparently, children are registered differently from adults and we are not going to change her registration right now.

The appointment was really great, our best visit ever. Everything she tried and liked, the answer was, "OK, keep that one. What about this one?" I could hardly believe it. I certainly wouldn't go shopping like that, it's usually an either/or, but not for this outing. She went home, her monocular tightly zipped in her pocket. She proudly showed her family all her lovely magnifiers, before putting them safely in the cupboard with her sunglasses.

Acroma-Summer

It's timely to give an update of how Charlotte has been getting on during the course of our summer activities.

As each year passes, she gets older and becomes more independent; we get a clearer idea of what is in store for her.  I've been more conscious about what goes on at school but I don't often take the time to document what is going on in other areas, particularly outdoor activities. 

I'm pleased to say that she is busy living an active life, playing hard, having fun and we don't notice many areas where she is limited in what she can do.  To most people she is a normal child who wears cool sunglasses.

It is important to say, in every setting, Charlotte never, ever, hesitates to get outdoors.  She loves being outside and she loves sunny days.  She does not seek out the darkness, nor does she exhibit a preference for cloudy days.  Sure, she sometimes chooses to go indoors after playing outside, but no more than her older sister, who can often be found reading on the sofa.

I'll break up my outdoor observations into three different areas: at home, out and about, in nature.

At home

In our own garden, Charlotte shows complete independence.  We have some tricky steps down from our back deck to the lawn.  They are different depths, heights and materials and have no handrail.  Nightmare!  She has no difficulty with them because she has memorised them perfectly.  She does take them slowly and gets on to the lawn as fast as possible.

Once in the garden, we have a very flat lawn with no lumps, divots or banks.  But she doesn't restrict herself to the lawn, she loves to explore, climb up in the flower beds, behind the shrubbery, everywhere she shouldn't be!  She is a huge fan of the trampoline and climbs on and off independently.  The only thing she can't seem to do is find her shoes if she has kicked them off willy-nilly and they have landed under the trampoline.

Out and about

Being out of the school/home routine has given me an opportunity to observe Charlotte in unfamiliar environments.  She rides her scooter to school, this takes 7 minutes and covers very familiar pavements (usually being pulled by me).  I'm guessing here, but I think the scooter gives her a lot of confidence because it provides a constant connection with the ground.  When we were away recently, we didn't have the scooter, and she had to cover unfamiliar ground, all the time .  She held on to my hand almost constantly.  I am unclear if this is because I always take her hand, and often insist on it, or if it is because she wants to.  I'm thinking she wants to because when a friend took her hand one day, the reaction was immediate: "Wow, Charlotte, you have a strong grip!"

I am always very clear about telling her every time the ground changes level.  "Step.  Step.  Step" is a constant refrain.  "Big step."  "No step."  I do it instinctively and don't even think about it, until I get frustrated with my husband for not doing it.  I describe how far the step out of the car is, even tell her when there are no steps but the ground surface has changed.  She also benefits from assistance at a new playground, just to find all the equipment.  A big sister is very helpful here and they are soon at the top of the tallest slide.

When we stayed in someone else's home, I put masking tape down as markers on the outdoor steps.  The tape wore off after a few days and Charlotte asked me to replace it.  She told me where the tape used to go, that it was there for her and that I was to replace it or say step-step-step!  She seemed so knowledgeable about the steps that I didn't replace the tape!

In nature

Lumpy ground is really difficult for her.  Going from the car, across a pavement, uneven lawn and on to the beach is quite an obstacle course and I don't think she enjoys it at all.  At the moment, I am trying to get her to lift her feet high when she walks, to avoid tripping and to deal with changes to the surface level.  She is such a shorty that she pretty much needs to lift her knees to her chin at all times.  I'm so pleased that she is in Crocs this summer and not flip flops, they are protecting her from stubbing her toes endlessly.

We tried a little "hike" while we were away.  It was essentially a nature trail through the woods.  It was covered with tree roots and rocks with some steep up and down sections.  She did really well but there was no way she could have navigated it independently.  Walking a nature trail, holding someone's hand is quite a challenge, the path is too narrow to walk side by side so I often had to take the side edges and try not to fall off.  When we got to the rocky river bed, there was no way that she was not going to try to leap from rock to rock.  Little mountain goat!  I'm not entirely sure how the nature walking is going to pan out as she gets older. 

The girls enjoyed walking around on some old train tracks.  I hated it: it was too hot and the going was really slow, stepping from sleeper to sleeper or balancing along the rails.  I talked her into walking along the gravel path beside and we made much faster progress.

She loved swimming.  When we started lessons, I told her teacher that she has really, really bad vision.  I didn't go into more detail than that - there would be other kids who need glasses who have to take them off for swimming.  At the beach, we were paddling rather than swimming and she was always the last to get out of the water.
I do worry that I find myself pointing out details to her older sister and not bothering to show her extra stuff.  I don't know if I should try harder or not.  If I see a crab or a tadpole, I could spend ages trying to point it out to her and she still won't see it, and then it's gone.  Frustrating for her and for me.  Maybe when she's older.

We've been having a really good summer and, fingers crossed, it's not over yet.  When I first found out about Charlotte, I thought that meant the end of beach holidays for our family, that she would prefer rainy days and indoor games.  But none of that has proved true.  She is active, outgoing and adventurous and she doesn't, for a minute, think there is anything that she can't do.

Tinted swimming goggles

I got the darkest tinted goggles I could find for Charlotte.  (These ones from Amazon)

She has been wearing them fine at indoor pools but they did not cut the mustard yesterday at an outdoor pool on a sunny day.  She isn't swimming independently yet so they weren't a problem in the pool but when she got out, she was really cautious about where she was walking.  It was obvious that she couldn't see well at all. The contrast with her behaviour once she put on her tinted glasses was remarkable.  Clearly, the glasses make a huge difference.

I'm not sure how we are going to be able to help her with swimming as she gets older.  Contact lenses under goggles seems like they would easily get lost.  She can wear her glasses for casual swimming but not in the ocean, or proper kid swimming where they are jumping in  and going under the water all the time.  Living in the UK, I guess this is not going to be much of a problem on too many days of the year ;)

Article: retinal imaging

Article from Chicago Lighthouse
Applications of High-Resolution Retinal Imaging in Achromatopsiaby Joseph Carroll, PhD
The Eye Institute, Medical College of Wisconsin

I always read these research reports with such mixed emotions.  On one hand, I would love for there to be a "cure" for Charlotte; on the other, I don't want to get our hopes up.  On the one hand, the researchers seem to be making great progress; on the other, any treatment will take a long time to get to market, with many setbacks.  On the one hand, she could have greatly improved vision one day; on the other, her cone cells are deteriorating/dissapearing as she ages and her time is running out.  On the one hand, there will eventually be a treatment; on the other, it will not be without significant risk.

It's such a rollercoaster.   One day at a time...

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Playdate planning

Charlotte has her first drop-off playdate this week.  I have been trying to walk the line between preparing the carer for keeping her safe on the walk home from school and having them to think it is all too daunting to take on.  

I ended up saying "Don't worry too much, the worst that will happen will be that she falls over."  I think I need a one liner about a single task, something like, "Don't forget, she can't see a step until it's too late".

Sunglasses A/B testing

I know there is some variation of opinion about red lenses within the Achromatopsia community but I thought I would share this little experience from yesterday. 

Charlotte is finally old enough to start to make proper decisions and communicate them in ways that I can understand.  We ventured out in bright sunlight, she was already wearing her third tier pair of sunglasses, her off-the-shelf Julbos.  She seems to like wearing them indoors, she often goes and finds them for herself (and calls them her "special brights").  I suspected that she can't see as well with these as her Moorfields pair with prescription and custom tinted lenses (her "school brights"), so I stashed these in my bag as we walked out the door.

As soon as we stepped outdoors, I could feel her hand grip me tighter and her steps get smaller and more tentative.  The difference between that and her ususal behaviour was remarkable.  I stopped her and made her try on both pairs of glasses before choosing which to wear.  She didn't want to experiment but quite quickly settled on the prescription lenses and we set off as normal.

 

New teacher

Charlotte has a new teaching assistant assigned to her.  She will be there 4 days a week which is what the statement funding will cover.  It will be great to see how she makes progress in the classroom with a bit of extra support.

She told me that the new teacher showed her how to draw a bicycle with two wheels and a seat.  It seems as though she was not aware that pictures of bicycles included a seat. 

The plan is that we won't make Charlotte expressly aware that this teacher is assigned just to her.  It will be better for her socially, and for her relationships with the other teachers, if the new teacher is there as extra support for the whole class.

I am so pleased and proud of the school.  So many (private) schools won't accept statemented children; but this one understands that there are benefits for the class and the whole school.  From a purely mercenary standpoint, they have put in some extra work up front for paperwork and meetings and got an additional teaching assistant out of it.  Who, parents and staff, would not prefer their nursery class to have one teacher and three assistants?  By the time she gets to year one, it would mean a doubling of assistant resources across two classes.  (Two assistants for two classes, instead of one shared between two).

I am aware that this is possible because of public funding and I am incredibly grateful for the state support that she has received.  From medical services, through visual impairment support and disability benefits, we have been incredibly fortunate.  Tax and spend, heh?

On a practical level, I briefed the new teacher by giving her a copy of the incredibly helpful Teachers Guide to Helping a Student with Achromatopsia from the Low Vision Centres of Indiana. 

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.