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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