Inspiration comes in many forms

http://www.ted.com/talks/caroline_casey_looking_past_limits.html I'm not sure how I feel about this woman's experience. She is clearly an inspiring speaker and will do a lot of good in the world. There is no such thing as too many positive role models! The part I feel most confused about is how her parents decided not to tell her that she was (is) blind. That is an incredibly brave decision to make and I don't think I could do it. But I worry that I should do it. This woman is a high achiever, David Blunkett (a former politician who was the Home Secretary) said he grew up not knowing that he was blind. Is that what it takes to achieve in the real world? A belief that you are no different from anyone else, a belief that can only be truly obtained if you really are never told that you are different? How is that even possible? Able-bodied people are all different in their own ways and many people have huge insecurities and self doubt. To me, making the most of what you've got is a huge part of attaining real maturity. Besides, I could never maintain a secret like that. I am naturally an honest person and I would feel like I was keeping a secret from her. I don't want her to feel like she has to work 20-100 times harder. She has a right to ask for help, in the classroom, in the workplace, get low-vision aids working for her, get disability allowance, get that fabulous blue badge for parking! Those things don't exempt her from a social contract, she still has to work hard, love others, do her best and make her life what she wants it to be. If she chooses to fake vision (as she well might) I understand but I can't do it. Is it my own selfishness, my need to talk, vent, explore, come to terms with this? All I can hope for is that we raise a well-rounded, confident child who loves herself. I'll let you know how we get on!

Pre-school plans

Charlotte has been offered a place at a little Montessori nursery from January. After all my angsting about schools for her, I am pleased that she has been accepted somewhere. She will be going three afternoons a week and we will see how she gets on. In fact, while I am interested in Montessori for her, this particular one isn't my first choice. I'm planning on moving her if she gets accepted elsewhere. It is fine for now and, if nothing else, it will get her used to being around other children and socialising that way. I'll report back when she starts.

Too dark!

I've been very neglectful of this blog recently. Life has been good, Charlotte is a total cutie who makes us laugh every day, and I have not had anything to say about Achromatopsia. No news is good news! I thought I would share this cute anecdote from this evening though: I had the light off in the kitchen and on in the hall outside. Charlotte said, "Too dark! Ligh' on in ki'ken!" So I had to turn on the light.

Disability Living Allowance

Charlotte has qualified for her DLA. She is getting the middle rate and we can apply for more when she is 3. I'm pleased for her, we'll save it up and hopefully it will make a difference to her future. It feels strange, she seems so normal. I guess she is one of those people who the government will move from disability to jobseekers benefits. Probably right, she probably doesn't really qualify but while she does, we'll save it up for a nest egg for her.

Disabled parking

This thing is not without it's silver lining: Charlotte has qualified for a disabled parking permit. Never mind the fact that she is too young to drive and doesn't have good enough vision to qualify for a licence anyway, she gets parking perks. I'm sure we'll be suitably grateful if she has significant mobility issues in the future, but for now they're perks.

Now, where we live, these parking perks are particularly valuable. We can park in any resident's parking bay almost anywhere in London. Given the fact at there is no free parking anywhere in central London, this is huge! To put it in perspective: if we go for a playdate by car, we would normally have to put the car on a meter; I have to buy an annual parking permit just to park the car outside our own house. Thanks to Charlie, I never have to pay for parking again!

Baby ride!

Charlotte is doing fantastically well this summer, she is having a good time in the garden every day, doesn't care if she is in the sun or the shade, wants to run races against her older sister, loves to go swimming, climbs to the top of the tallest slide and sends herself hurtling down. She is quite the thrill seeker and a bit of a daredevil but she really seems to know her limits and to test herself on them. She is not just doing crazy things because she doesn't understand the consequences, she genuinely appears to weigh up the risks and act with courage. She is also tenacious and insists that we don't help when she is pushing herself to master new things.

My favourite thing I've done with her this summer was when we hired bikes with child seats on the back. Emily didn't like the tipping feeling she had before we took off and took forever to settle down during the ride. She cried so much we should have turned back. Charlotte, on the other hand, loved it from the start (OK, she had a tantrum when we made her wear a helmet), she thought she was riding, grabbed her little handlebars, wouldn't let me touch them, and chatted the whole time. She kept saying, "Baby ride!" She can't say her own name and calls herself Baby, her other favourite was "Whee!" every time we coasted down a hill. I can't wait to take her horse riding!

Our "little holiday"

The girls and I went on a little holiday this weekend. I won a hotel stay through an event at work and I couldn't get a Saturday night so I took a Friday instead and M took the train to join us after work.

So I set off alone with the girls and drove almost across the country to our hotel. They were absolute angels and such a pleasure to be with. We picnicked in the grounds, then went for a swim, ran around the gardens some more and went out to dinner together before I put them to bed, all of us in the same room. Every night at home, I go in to their room to look at them before I go to bed. I smell their lovely smell and wish I could just roll out a mattress on their floor and spend the night there. That's what I got to do last night (but with a real bed!). Today, we had breakfast together, another swim and then packed up and drove home. A little holiday.

I need to work more on appreciating the here and now with them. Too often, I wish away the time or wish I was doing something else. They are the most precious things to me and yet I don't always feel grateful for the time with them. I must read more stories with them, laugh with them more, shout less and generally enjoy the present more. Not because I have to but because I want to. These thoughts have been on my mind a bit recently and someone at work told me about The Happiness Project this week. It sounds pretty good and I'll have to look into that some more. It's probably why SouleMama is so popular: whatever our lifestyle differences, her writing is all about appreciating the here and now. We saw a terrible accident on the motorway on the way home - they had landed a helicopter on the road to transport the casualties - I was (and still am) so affected by it. People's lives have just been changed forever. I am so happy with my lot, I just need to stop, remember that, and savour it.

Adaptive technology

Great video from the Achromatopsia Convention on one of their sessions here. Thanks for uploading guys - can we have any more?

It is a session showcasing adaptive technology available to Achromats and it's a bit salesy but I don't mind.

Products to remember:
Digital Handheld magnifier - quick, easy, small and light, shows you anything up close.
Colourino - who knew, a machine can tell you what colour something is!
CCTV - while I am not sure many Achromats actually need them for reading, the mobile arm could make a big difference in seeing across the room as well as up close magnification.
Voice-to-text software - to make typing email or notes quicker

But to my mind, the very best thing about this video is the presenter. It's not shown in the conference materials and it took me a while to work it out, but I think he is an Achromat. I only worked it out because he was talking about what works for him, otherwise, he looks like a regular but super-confident guy: giving a presentation in front of a room full of people, seeing hands raised for taking questions, talking about his grad school, his wife - yay! I looked really closely and wondered if he was wearing red lenses but couldn't really tell and he dislike of peer into reading materials, but nothing that would make anyone point and stare.

Point to remember: other people don't notice or care. He told the story of being self-conscious using his monocular in class and the guy sitting next to him for a 10 week course noticing on the final day!

Achromat Kindergartener

I am (slowly) widening my circle of Achromat families and contacted someone through the Facebook group. She has a four year old who is about to start school. It was so great to see him in action today, he is a totally normal kid and all the kids had a great time at the soft play and the cafe that we went to. It is really good to compare notes with other mothers and find out about their situation. They are with the same consultant that we have, which is cool, and it was also interesting to note that he hasn't got a Statement for special needs for schooling. It really is a spectrum between lots of intervention and getting on with life as usual and each family falls somewhere along the line for different things. I was so interested in finding out as much as I could, because they are two years further down the road that we are on, but we ended up chatting about completely unrelated things about our kids and lives! I guess it's as good an endorsement as any that life goes on just the same.

I do want to write down one fantastic thing that she passed on to me: the head teacher at her son's new school said to her that every family has an issue, in some cases, it's obvious and in others it is more subtle, but all families have things that they have to deal with. Such a lovely, reassuring thing for him to say, and I really want to remember that.

Uh oh!

We've been having such a good time these holidays, the two little girls and I. They are so delightful and (mostly) so easy to be with that I am wondering why I am not spending all my time with them over the summer. There's not even enough time for me to do the things that I want to do with them over these few short weeks.

As they get older and both go on to school, I am thinking I might ask work if I can take the summers off without pay. I am sure they would agree, we are so quiet that I am getting pretty bored. But little kids are so cute and I want to be with them now! I might not like them when they are older and they definately won't want to be with me so why can't I do that now?

Maybe it is time to re-think work? I could join every parents' activity at school to secure Charlotte the best chance of getting in to Emily's phenomenal school. (Just wait, tomorrow morning they will be little horrors and I will long to get out the door on Monday!)

Disability Living Allowance

Today I sent off Charlotte’s application for Disability Living Allowance (DLA). 
 
I have been going through a lot of conflicted feelings about it in general and have put it off for over a year now.  But that’s not fair on Charlotte so I have to do the best I can to secure her any money that she might be able to claim.
 
My conflicted feelings centre around guilt, that handmaiden of mothers everywhere:  she seems so capable and is developing so normally that I feel guilty claiming disability for her, like she doesn’t need it and might be taking it away from someone who does.  I counter that by remembering that she does have significant difficulties that will slow her down in life and she is entitled to support for them.  I have been answering the questions on the application form based on her abilities when she is outside in daylight, without adaptive eyewear/assistance, I realise how helpless she really is and am grateful for the aids and support that she can receive.  I also feel guilty for claiming benefits when we are a family with a good income. 
 
I expect that she might be granted the middle rate of allowance which, at almost £50 per week, could quickly add up.  My intention is to put it in a bank account for her and keep it as a nest egg/trust fund for her when she is older.  She will probably have extra expenses in her life (eg sunglasses, taxis, living in central London, might find it difficult to find employment/a sugar daddy etc) so I hope that this money can make a little difference to her in the future.
 
Hence, my desire to put these benefits aside for her future and not fritter them away ourselves.  I believe in the welfare state and universal benefits should be available to all regardless of means.  Plus, family means do not always translate into future personal means and who knows what circumstances any of us may find ourselves in the future.  I’m reminded of the Chinese proverb, “From rice paddy to rice paddy in three generations.”

Scared of the dark?

How ironic!

When we were away recently, we arrived in the town after dark. Both children were a little overwhelmed to be arriving in a strange town and told to get out of the car in a church square to walk down the street (I love small town Italy!). When we got to the house, we took them out into the garden so they could see the stars - poor little London dwellers, never get to see the stars - but they were having none of it and just wanted to be taken inside.

I thought Charlotte would love to be outside at night but it appears that familiarity and security are more important to the almost-twos than being able to fully explore. I can wait until she is older to start our night time explorations together.

Playing outside

We've been away recently and Charlotte was having a wonderful time playing in the garden. She spotted a ball across the lawn and ran after it, argued with her sister over who was going to play with it, won the battle and ran off with it. Earlier she was picking tiny flowers from the lawn and handing them to me - in full sunlight! It was wonderful, so encouraging. What parent of a blind child ever expects to be handed flowers like that? The red lenses from Noir were great, she wouldn't go outside without them and always asked for her hat too. She can now ask for and put on her own hat and sunglasses and a new word is "bight" (bright). She went swimming outdoors for the first time, she didn't want to get in but then she didn't want to get out and loved being tossed in the air and caught in the water! She ate gelato every day and pasta every night so all in all, it was a fab trip.

What was obvious is how she really can't see changes in the level of a surface. The garden wasn't completely flat and the slopes caught her totally off guard. She knew this and wouldn't venture outside without a hand (han') to hold. But she has proved herself sensible, adventurous and tough over and over again so she's doing just great!

OT: Discharged

We have been discharged from yet another service! Great news because Charlotte is doing so well, but on the other hand, I have found it really reassuring to go to these professionals to have them pronounce her fine and I am going to miss that kind of contact.

Charlotte sat there and performed every task in the test so well that it was a case of "what are we doing here?" What was remarkable was how she couldn't fathom a colour recognition test. She clearly didn't have the first clue what to do so it does show that for all her wonderful coping skills, she will need significant help in some areas.

White cane travel

Paddington Station is quite the location for white cane spotting today, we've been here 5 minutes and I've already seen 2!

One of them was a Dad with his wife and two kids and they were clearly on a family day out. I find that so encouraging: he's got a partner, he's got children, they're doing regular stuff, he must have a job (because they weren't dressed in rags) and that is really the things I want in life for both my children. It's great to see blind people living normal lives.

Hearing: still not out of the woods

We were back at the ENT hospital today for yet another hearing checkup for Charlotte. While I am wholly grateful to the NHS for the first class treatment we have been getting for free, the waiting times each time we attend a clinic are phenomenal. But today it was pretty good: in and out in less than 2 hours. But no discharge yet.

Charlotte still has some mild hearing loss. In reality, she is probably no worse off than many children her age but because we got into the system, they can't discharge us in good conscience until she is testing normally. Today's tests went particularly badly: it was nap time, she was crying and carrying on too much to hear the sounds and hated having headphone-type sensors put in her ears. But we got the best results yet so hopefully next time, with more co-operation from her, she will get a good score.

Blog post

I wanted to share this blog post about mothering a disabled child. It sums up my feelings very well.

Famous navigators

Christopher Columbus, Ferdinand Magellan, James Cook? Oh no, my little Charlie is the best of them all!

Without her, Granny wouldn't have found her way to pick Emily up from school. She was heading into the completely wrong classroom and Charlotte grabbed her hand and started pointing and pulling her into the right room. Granny had no idea why she was making such a fuss but was so proud of her for being such an expert navigator. Not bad for a toddler!

Little rocker

Charlotte went to her first concert today. As I suspected, she rocked out!

Aside from the typical naughtiness expected from the under twos in public, she seemed to really enjoy herself. She danced along, looked at the lights, enjoyed the darkened surroundings and was generally an exemplary concert participant. I thought she would enjoy it because even in Starbucks, she bops in her seat to the music!

It was pretty clear she couldn't see the stage and was probably completely unaware that there were people on it but even Emily had difficulty grasping the concept of a live performance. Maybe binoculars would help her in the future, but, hey, who can see properly at a live performance?

Who did we see? The Wiggles!

Achromatopsia playdate

This week Charlotte had her annual get together with her little friend Harvey. We can only do this during school holidays because they don't live very close to us but it was worth the trip. It is so nice to get together with people who are having the same experience as us and even if Charlotte and Harvey have nothing in common as they grow up, hopefully it will be a comfort to each of them to know that there are others in the world like themselves. Plus, it is fab to go to someone's house where they also keep the curtains closed!

Airports

I've been I've been travelling on business this week and thinking about navigating airports with a visual impairment. i was noticing the special assistance given to some passengers and wondering if Charlotte would avail herself of it in airports.  They seem like they might be great in some ways and terrible in others. The lighting is really bad but all the floors are level and smooth with wide corridors; but the signage would presumably be a problem: reading the departure boards would be a nightmare. But they have those great golf carts for assisting passengers who need it.

I would think that is she wants to be an independent soul, she would navigate airports on her own but if she feels like a big of pampering (as I do at my age!), she could book some assistance and get all the benefits of being driven to the gate and queue jumping. This would presumably not apply with a discount airline.

Of course, once she is on the plane, she has proven that she loves, loves, loves the rod lighting!

More pre-school stuff

I had a very nice phone call today from the principal of the pre-school of one of the schools we applied for. She said she was calling to find out a bit more information about Charlotte's condition and if there was anything they could do in the assessment to enable her to have a better experience. We talked for a while and I tried to explain as succinctly as possible. She offered that they could assess her one on one in a room with the blinds drawn. I'm impressed! The suspicious cow in me wonders whether she was calling to find out more information to decide if they are going to assess her or not, but if I take her words at face value then I like their attitude and they are climbing to the top of my wish list! I am sure she was also impressed with my wonderful document full of positive statements about what Charlotte can do and how high our expectations are. I hope that there are some schools out there that would be proud to brag about how clever one of their disabled students is and feel good about educating a blind child so successfully.

More gene therapy trials

Another publication of a successful clinical trial here. This one is only mice and apparently large mammal trials are always a better indication of moving closer to human trials and actual therapy.

I never know whether to get excited about these kinds of reports or not. On the one hand, a treatment will be possible one day and will be a wonderful thing for all those patients and families that it will benefit. But I always read the part about it having success only in young animals and believe that treatment will always come too late to benefit Charlotte. Then I get depressed again. It is sometimes better to have no hope than false hope.

On the other hand, as this kind of therapy becomes more widely used in the future, they may be able to make smaller and smaller gains with less risk. This might mean that even though she wouldn't have normal vision, she might be able to have a slight improvement which would still be worth it.

I really should go and sort out getting genetic testing for her. We've been meaning to for ages and we want to be ready to hit the button should anything really become available.

Assessment update

The school assessment went much better than I expected. By that, I really mean that Charlotte didn't cling to me and cry and refuse to be put down. She was even happy to sort of play with toys that were scattered on the floor. The Admissions Secretary (I know, I know,) was even nice to me! She even suggested that Charlotte might start in the nursery in January with a view to staying on there for an additional year. This is something that I am quite keen on even though M has a knee jerk reaction against her "repeating" a year. We should find out quite soon if she is going to be offered a place. In the meantime, I am going to keep applying elsewhere because while I think the nursery of this school is great, as they get older, I think the school is a bit too large and the premises too small.

Whew! I'm just glad it's over!

School assessment

I forsee a run of school updates coming along so look away now if it's boring! I do think it is important stuff though: education of disabled and blind children must be forefront in most parents' minds. We want to give them the best possible start in life and the best possible education that we can. Ironically for Charlotte, I often think that however much we want her to go to a private school, none of them will take her and she will end up at a local school. Before anyone gets all socialist and lefty on me, I'm all for socialism but not in London schools where outstanding government schools are few and far between and high schools on the whole are pretty dire. Most parents end up moving out to the home counties by the time their children are school age.

But I digress. The school that we most want Charlotte to attend is the one that Emily is at now. But we have given our notice that we are moving Emily to a different school in September. After many meetings and phone calls, I've finally wrangled an assessment for Charlotte there and it is tomorrow. I am pretty sure that we are not going to get her in; the person in charge of admissions has a reputation for not being particularly accommodating towards parents and Charlotte is so young, she has barely started walking and doesn't really talk at all.

Still, I am going to go through with a charade of expecting that we will get in and see what happens tomorrow, she will probably cling to me and cry and it will probably all go quite badly.

On the other hand, I am making quite good progress with my admissions for other schools, I have called a few and got on a few lists already. I have also typed up a document detailing Achromatopsia, it's limitations and the accommodations that can be made to ovecome them. I have tried to keep it brief and upbeat and emphasise how committed we are to securing the best education for her. I think I'll take along a copy tomorrow.

Have I let her down?

Already?

I am having a bit of a panic about school applications for Charlotte. We want her to go to the same schools that Emily has been to but that is looking increasingly unlikely. The trouble is that we haven't put her down for anywhere else as an alternative. Because we are removing Emily from her current nursery, Charlotte will not be guaranteed a place there, indeed, I am hearing from parents that even those with siblings who are staying in the school are not being offered places. This is all leaving it a bit late to put Charlotte's name down for other schools. She seems like such a baby to me, she only started walking last month, I forget that she would be eligible to start in January and the schools are starting to look at their intake now. They are also starting the intake process for proper school in more than 2 years time. I'd better set aside some serious time on Monday to start requesting application forms for every school in the neighbourhood.

The assessments themselves are a topic for a future post.

Networking

Do you ever feel tempted to stop someone in the street just because they have a white cane or a guide dog? I do. I realise how inappropriate this is but I am still tempted to introduce myself to this one particular man whom I see at least once a week. He has a daughter at a local school and I see him frequently on the school run. But what to say? "Hi! You're severly sight impaired! So is my daughter! I don't know any real-life blind adults. Can we get together for coffee so that I can ask you lots of personal questions about your life?". Yeah, right.

Do blind people acknowledge each other when they meet, compare conditions and commiserate? Someone did tell me that he can always spot a visually impaired person even though he is blind. But I guess I should just mind my own business (this is London, after all) and wait for a time when our paths might actually cross or when Charlotte is not in her pram and he might notice her and introduce himself. That would be nice. In the meantime, it is nice to witness an essentially normal Dad, walking his kid to school, taking her and her friend home again, going to the gym, talking to people in the street, talking on the phone and looking for all the world like any other person in the neighbourhood. (I did say I see him a lot - I swear I am not a stalker!)

Survivor's Guilt

I was with my sister this week and we were talking about parenting Charlotte. She said to me that sometimes she feels bad that she has four healthy children (and I don't). Just acknowledging the thought was enough to make my negative thoughts (and I have had some in the past) evaporate. It's amazing how powerful words can be.

I replied that I don't begrudge other parents their healthy children, and I realised I really don't. No family is perfect, no child is perfect, and we are all just muddling through as best we can. We love Charlotte and love having her in our lives. The only reason we would wish things were any other way would be for her sake, not ours.

Outdoor progress

What do you know? Charlotte really likes being outside! She takes our hands and leads us outside. And it's really, really bright out there right now. She is particularly fond of pacing up and down one particular corridor of decking, complete with step, which she loves to navigate.

She seems to be enjoying her Noir sunnies too. After losing two pairs of sunglasses in two days, she is having to get used to two new pairs at the same time. (By losing, I mean tossing out of the pram while I wasn't looking.) Very upsetting but as long as the 50 pound + Noirs don't go the same way, we'll be ok.

I'm delighted that she is enjoying being outdoors, with or without vision. Just a few days ago, we went outside and she had her first barefoot walk and she hated it! My little tenderfoot English children!

Why do I work?

Good question. How about this one: Why are our children the most precious things in the world to us; the things we love more than everything and yet, sometimes (often even) we can't wait to get away from them and do something else? And then we miss them terribly.

I like to work because I like:
-talking to grown ups about things that have nothing to do with children (even if we don't always talk about very grown up things)
-reading whatever I want on the tube for 20 minutes, twice a day, 3 times per week
-having an excuse to wear makeup
-having a place to wear high heels
-carrying a handbag that has only my things in it
-having a reason to wear clothes that would pick up lint if I sat on the carpet
-having a to-do list that does not include "unloading the dishwasher"
-completing at least some of the items on said to-do list
-making money
-feeling productive
-expanding my horizons
-increasing my knowledge
-interacting with people of different ages and in different stages of life
-disagreeing with people who can properly express why they want something different from me (sometimes)
-having some quiet in my day
-sitting down for 8 hours a day
-appreciating the fact that a bad day at work or a bad day at home is fleeting because tomorrow I will be in a different environment
-knowing that I could support my family if I had to

Glue ear

We spent hours at the ENT hospital today. The clinic was insanely busy and I had insanely taken both children with me to the appointment. They were good as gold though and I would have worried about getting back to Emily had she not been with me.

Charlotte still has fluid in her ears, one is completely blocked and this does cause some degree of hearing loss. Hopefully time in Australia will clear it up a bit and then going into summer will be good for colds too. This could explain her slight delay in speech so hopefully she will catch up fast if we can get her ears cleared up.


She did really well on one of the tests that went so badly last time. Her vision is clearly much improved, she was interested in the light up boxes of toys. I don't know if she liked the lights or the toys but she was very interested and smiling away.


Unfortunately, this means we have to go back to the hospital in 3 months time and do it all again. Hopefully they won't be so busy that they can't even move patients through the rooms. Also hopefully a long, long plane ride won't do her ears any harm. Note to self: Charlotte really calms down if I cuddle her and sing softly to her (so the other passengers might be listening to many, many verses of The Wheels on the Bus).

Small steps

I am getting increasingly worried that Charlotte is falling behind in her development. She is still progressing (which is the main thing) but she is a few days short of 19 months and she still doesn't walk or talk in any meaningful way.

That said, she did toddle from the bathroom to her bedroom tonight. That is the most steps she has ever taken by herself and the first time she has taken more than 2 steps that weren't to another person. Also first time she has ever walked from one room into another. So great strides are being made there I guess! Two side notes: 1. she is a very good climber and 2. naked toddling is pretty much the cutest thing I have ever seen, after naked crawling.

Then the talking: for a special kind of torture, I consulted the excel spreadsheet I used to keep of Emily's words when she started talking (yes, yes, I know). She is a child genius, of course, but she had so much more vocabulary at 17 months than Charlotte does at 19 months. But Charlotte is still acquiring words slowly, not one a day by any means, but acquiring nonetheless. Emily was an early talker too, she had very intellible language by the time she was 2. I guess I was hoping for that for Charlotte. We have a second hearing test for her on Wednesday. Maybe it's the Glue Ear from the perpetual colds they have had ever since the summer. I'm pretty sure she can hear, she does now turn towards the source of a sound. She can hear something quiet, like the click of my phone.

All good signs, I know, I am just feeling a bit frustrated that her progress seems so slow. I was hoping she would be walking properly by now and talking a lot too. We'll be with my mum in a few weeks and I am hoping she will get some good one on one face time with her which should help a lot with the talking.

And so it begins

I had my first meeting with a potential school for Charlotte yesterday. I was actually meeting with the teacher to tell them that Emily is leaving but I wanted it not to be all about that. I want Charlotte to go there if possible so I want to be on friendly terms with them. It sounds a bit funny that I tried to do that by talking about my disabled child. They were sort of interested-but-distant. I think they were probably thinking, "why are we spending time talking about this stuff when she is not going to get in anyway because you took your other child out". Maybe I'm being overly paranoid about all this but the whole admissions process that goes on around here stokes that fear and paranoia among parents. This is just for nursery school! Which is the basis of the reason why we have moved Emily - she will now be going to a school which will educate her for the remainder of her school life and we never have to go through another admissions process with her again.

Surviving Great Ormond Street

We've been at Great Ormond Street Hospital today for a routine checkup for Charlotte. For various reasons, I've been dreading it for ages but, thankfully, it was nothing like as bad as I expected; and the news was even slightly more positive than I expected.

Firstly, it seems that the ERG test that Charlotte first had when she visited won't be repeated. This is the more painful one with the flashing strobe light and apparently it is used to diagnose other conditions that have now been ruled out for her. So the test that she now continues to have involves looking at a screen of moving black and white squares while they measure her brain activity. The most painful thing about that test is the pain all the adults in the room have: trying to get a toddler to wear electrodes, wires and a stretchy bandage to hold it all in place without pulling the whole thing off her head; and then getting said toddler to look at the damn screen long enough for them to get any meaningful readings. But we got there in the end!

The good news is that her rod function is still normal. Phew! AND... she might even have some faint cone activity. Whoo hoo! I'm not getting my hopes up but any cones are better than none at all. She might be an incomplete Achromat. Like everything else here, time will tell and life goes on regardless.

I wasn't that keen on the Dr who saw us, she is a fellow of our main Ophthalmologist (whom I really like) but in the NHS, you don't always get to see the consultant but one of their underlings. She didn't seem to handle our questions very well and it kind of felt like we knew more about Achromatopsia than she did. I think it was down to lack of communication rather than lack of knowledge but it might as well have been the same thing. At least we are not new to all this any more.

We'll be back at GOSH in a year or more. Fine with me, I'm in no rush to go there ever again. It is so heartbreaking seeing the children there. I've learned that the larger and more complicated the wheelchair, the harder I need to try to not look inside. :.(

Ball!

Charlotte saw something from across the room today!

Granted, the room in question is about two meters across but it still counts in my book!

She looked over at a small soccer ball and said "baw!" She was pretty excited to see it and I was pretty excited that she saw it!

I really do feel like her vision is improving every day.

A love of Audiobooks

One of the things I love about my new iPhone is how accessible it has made audiobooks. There are so many free titles that I think I will be listening for the rest of my life.

I would never have downloaded or purchased this kind of thing without a phone hence, my love of the phone.

I would hope to get the whole family involved in my listening pleasure. When we eventually get our first car (this summer), I hope we will listen to children's audiobooks during the school run. In the evenings, not caring much for TV (you never can tell when your favourite shows might feature children getting hurt), I now love to sit and listen, and knit, and hope that the children will join me in these peaceful evenings as they get older.

Not that we expect our children to mirror ourselves and our tastes, but I do take great delight in the fact that something that is so enjoyable to me is so completely accessible to Charlotte.

New Achromatopsia Blog

A welcome new blog from someone with Achromatopsia:

http://factoidz.com/what-is-achromatopsia/

I'll be following along with interest because I can never get enough information from first-person experiences.

Maisie love

Charlotte just loves books. She is particularly enjoying Maisie right now. I just love watching her find the arrows to pull them to make the pieces move. The illustrations are perfect too: lots of black outlines and a plain white background. I'm so pleased that she is into books, I have always been an avid reader and I really worry that her vision will make books a painful experience rather than the pleasure I have always found them.

Ball Sports 101

Charlotte and I played our first ball game together today. She has a great throwing action and fantastic timing. (But we've known that for ages by the flinging of dummies out of her cot when she doesn't want to be pacified!)

She didn't want to just roll the ball back and forth today, no, she wanted to bounce-pass it; and she did so just beautifully! So she can move the ball, she'll just need to figure out some tricks to receive it.

Achromatopsia Convention

Some of the hard-working Achromats who network heavily through Yahoo Groups have arranged themselves a convention.

While we won't be able to attend (Chicago is a bit too far), I do want to give them a plug: it's 1 - 3 August and while the website is obviously still being compiled, the registration looks like it's working: www.achromatopsiaconvention.org

I like to think that one day I would have the guts to turn up at something like that. Go achromats!

Famous blind people

I love hearing stories about famous blind people. What I love even more is when I have had no idea that they were blind.

3 particular cases:

1. David Blunkett, former Home Secretary of HM's Government.
This guy held one of the most important posts in the government and was in the news almost daily. He resigned from the government twice and was in disgace for cheating on his wife. I probably read at least 50-100 articles about him before I read one that mentioned (in passing) that he was born blind. While I don't agree with his politics or his morals I absolutely love the fact that a blind man is so famous for everything except his blindness. I still haven't exactly figured out (or bothered to find out) what his exact condition is.

2. John Kay, lead singer of Steppenwolf (Born to be Wild).
I got this one from the Achromatopsia.info website because he actually has achromatopsia. I don't personally remember a time when he was famous but I definately know the signature song. Apparently he now lives in Vancouver - maybe we'll stop by with our blind child next time we go to stay with M's mother!

3. APL.DE.AP, singer with the Black Eyed Peas.
I've noticed their quirky glasses but didn't realise one had nystagmus. Thanks to James from the Nystagmus blog for posting this story from The Sun.

Balloons are scary?

Why are balloons scary? Is it because she can't see them properly and they look like people-less heads bobbing in the air, or is it because sometimes toddlers find random things-they-don't-understand a bit frightening? Is it a bit of both? Either way, Charlotte finds them a bit offputting, along with teddy bears (but not Emily's teddy).

She is toddling a few steps here and there. Not many, she doesn't have much confidence although she is much more physical than Emily was at the same age. She is climbing. That's a real worry! Cute, but dangerous. I love seeing her lift her little chubby leg and foot up high and really believe that she can scale the side of the bathtub!

But she did crawl into a wall at the neighbours house on Sunday. She was wearing her sunglasses too. I always worry that she won't be ok. Please be ok, little one.

Denial is a river in Egypt

She can see where she is going; she can see where she is going; she can see where she is going. Why does she fall down steps?

As Charlotte's mobility increases, I get more and more worried that we are going to find out the truth that she can see very little indeed. We have been having a wonderful time with her, she is funny and cheeky, she loves looking at books, she plays with all her toys in ways that seem extremely normal to me, she has been making great progress with both gross and fine motor skills, she is starting to talk a little bit. Aside from her sunglasses or squinting, I really don't notice much that's different about her.

But she doesn't look across a room, ever; and she has a tendancy to fall down steps. Before you get all concerned, she doesn't take a tumble down a flight of stairs, she seems to see them ok. It is a single step that appears to come out of nowhere for her and end up with her face down on the floor. Even in our own house, which she knows best of all, (where there is only one step in the entire property) she has crawled off it.

I don't really know where this falls under normal toddler behaviour and where this is happening because she is a blind child. In my parents house, there is a particular step that my Mum had to put a black piece of tape across because fully-sighted people kept falling off it.

Will a few of these tumbles make her more careful or will she end up needing a cane to walk around people's houses?

Happy Solstice!

What great days for Achromats! With these dark mornings, early evenings (and even a solar eclipse!), these are the perfect conditions for Charlotte. As she gets older, I can imagine us taking her outside during days like this. She can learn how to ride her scooter or her bike in the dark, run all her errands as an adult and generally live quite a lot of her life in real twighlight here in the UK. If only it wasn't so cold, it would be perfect.

Happy Winter Solstice to Achromats everywhere - stay away Spring!