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.

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.