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.

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.

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.

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?

What a clever girl!

Charlotte can see so much more than I realised! She was emptying the kitchen cupboards again yesterday and started handing me plates. Then she wanted to put them up on the counter. This is delightful because she is mimicking me - our kitchen is brightly lit and her chair is a couple of meters from the counter. So this is marvellous vision indeed!

A normal kid

We are too boring to be interesting to medical professionals. I love that! Charlotte was discharged from the Developmental Paediatrician today. We were going as a monitoring exercise and he has seen us twice. While he was examining Charlotte today and she was co-operating, chatting, making eye contact, smiling, he looked at her and said, "Look at her, what can I say?" I said, "She looks like a normal kid." Exactly. Move along folks, nothing to see here.

She also has a new tooth and it seems to have been bothering her because she was in the sweetest mood today. We had a lovely time and she is such good company. Emily was off sick from school today so I didn't get the long Charlotte-day that I was hoping for. But Emily wanted to sleep much of the day so Charlotte and I did have lots and lots of one on one time. She is just darling!

Now she's cruising!

And getting ready to climb. She only started crawling about 3 weeks ago. She's ready to head off on her own. Emily was nowhere near this advanced, she didn't take any weight on her feet until 13 months. But Charlotte still only has 4 teeth and doesn't really speak so it just goes to show how different they all are.

"Ma-ma"

Going to the hospital on Tuesday did affect me more than I thought it would. It was a pretty sad day. But after a little cry that evening, I've been ok since.

Because I was feeling so down, I worked extra hard to get Charlotte to say Ma-ma for the first time, and she did!

She said "Da-da" a while ago but doesn't say much very often. (She probably has no opportunity with Emily around, making so much noise.) But when I was bathing her that evening, alone, she was making lots of sounds so I worked on having her watch me say "ma ma". She stares intently at my lips when I am making sounds, like she is really trying to look at how they are made. I am surprised by how visual it seems to be for her. I guess I thought that speech was mostly aural and she would just start making proper sounds on her own. I think I will have to start spending more time speaking clearly very close to her face so that she can see my lips moving properly. This is something I guess we take for granted in a fully sighted child who can see our lips moving across the room.

Crawling cutie!

Charlotte started crawling this weekend. She has been at it almost a week now and is finally getting the hang of it. She looks so adorable, crawling away from me with her bum wiggling from side to side! I've never had a crawler before - Emily was a bottom-shuffler. Emily thinks Charlotte is hilarious and they were so cute this evening, crawling along together. She doesn't think it's so hilarious now that Charlotte can get into her stuff. We have to work on having Emily doing unsuitable-for-baby things on tables and distracting Charlotte with other activities. She is just so darn stubborn, she has her father's stubborness and her mother's fiestiness - oh boy!

I have always had high hopes that mobility would give me better clues about the light levels around the house that Charlotte feels comfortable with. Tonight, she was quite willing to go through patches of the passageway that were quite well lit. I was really pleased because I expected she would avoid them. Maybe I can open the curtains a bit.

I am also hoping against hope that this newfound mobility will end the extreme fussiness and separation anxiety that has been going on around here for the last few weeks. Whenever I put her down, she cries instantly, then I pick her up and she squirms to get down. Actually, I think she squirms to get closer to what she wants to see and she wants me to take her there rather than put her down. Sorry kid, not going to happen, you're on your own now. Off you go!

Miscellaneous ramblings

I've got lots to write about today, sometimes I think I don't have anything to say but if I really think about it, I can usually come up with something. Today, I have lots of somethings.

Firstly: Charlotte and her injuries. It's still not normal and not right. I took her to the doctor yesterday. He was nice about it but didn't really feel that it was so serious that it merited further investigation. He recommended damage limitation and wait and see. That's ok with me for now. While it is concerning that she would rather do the action than avoid injuring herself, it could be a bad habit, it could be a way of stimulating her senses, it could be soothing and hopefully, it will just go away on it's own. At least I have raised it with someone and I don't feel like I should be doing any more right now. The Dr pointed out that if anyone is going to work with children with negative behaviours, it would be when they are older anyway. I am still going to mention it to every professional that we go to see and I am going to call her VI teacher about it again when the summer holidays are over. Also, it is good that I know about these sorts of injuries before the new nanny starts, it would be very disturbing to have random bruises and scratches appearing on my baby with a new caregiver in the picture. I'll have to talk to her about them when she starts (one more week - can't wait!)

I finally got up the courage to start going through Charlotte's baby photos in preparation for producing a baby album for her. I haven't been able to look at photos from her first three months. All I think about is how we were so happy and we had everything we ever wanted. Well, no one ever has everything they ever wanted and we are still happy now. One of the things that Martin articulated when all this first happened was that he lost the feeling that he had always had that life would only get better. I think we are back in a place where we do expect that life will continue to get better. We really do have it very good. Still, the photo viewing did make me sad. But I am looking forward to producing a nice album for her. Since no one has given me a nice album, I think I am going to get a photobook online. Filling it with pictures of a second baby is always a challenge - there are almost none of them alone!

I finally took delivery of another Achromatopsia-related book today. It is No End in Sight, My Life as a Blind Iditarod Racer by Rachael Scdoris and Rick Steber. Rachael has Achromatopsia and I'm looking forward to reading it. In fact, I have read about two chapters already, as I finished undoing the packaging - even though I was supposed to be making dinner. I'm going to sit back down to it as soon as I finish this blog post. I think it will be a pretty fast read and I'll post a review when I am finished.

A good article about Blind Football was published by the BBC today: http://www.bbc.co.uk/news/magazine-10914782 I don't know if I am more attuned to it now, but I do see mention of Blind Sport from time to time in the mainstream media. I guess it is one of the more intriguing things about blindness - most people know about Braille and guide dogs. I think it is good exposure and I really hope that we are going to be able to hook Charlotte up with sports associations in the future to help her build confidence and physical skills. Of course, if she wants to get out there with the fully sighted, that's fine too! I think I will be paying closer attention to the Paralympics, looking for blind athletes to point out to her.

The Yahoo Group has posted some early ideas about an Achromatopsia Conference that they would like to plan for next year. There have been a few in past years. It sounds like a good idea and I have been wondering if I can lend my event-planning skills in any way. Mainly, I am wondering if I can bring any money to it by finding willing sponsors or exhibitors for the event. I'm not sure, there are two companies I can think of who would be flogging their products and services to Achromats and they know they are already well known by the community so I don't know how much they would pay to get in front of them. Maybe to preserve exclusivity?
Sponsor types:
-Ophthalmologists
-Low Vision services
-Sunglasses
-Genetic testing services
Something to think about anyway. I wonder how many people they are expecting? I don't see us going but I'll follow along with their progress.

Mwah

Mwah, mwah, mwah. That's the kissing noise that Charlotte makes every time she sees me! It's so adorable! I think that is my name at the moment because she can't yet say "mama". It's because every time I pick her up, I kiss her, usually about 3 times!

She's still doing the stretching and tensing. It's not normal :(

Not normal

Charlotte's tensing is really bothering me right now. She does it constantly. So much so that Emily has now started doing "ballerina feet" - she sits on the edge of a chair, crosses her ankles, points her toes and stretches her legs out. It would be very cute if it weren't so worrying.

I mentioned it to our Achromat-friend's Mum and she said that he used to do it too. I was so concerned that I phoned her over the weekend to talk about it some more. I wonder if it is a coincidence or if it is indeed related to their vision. He doesn't do it now that he is walking but he does keep some tension in one of his hands which is clenched in a fist some/a lot of the time. I hope she does mention it to Professor Cone because I would be really interested to hear what he has to say about it.

Charlotte does hers when she is excited, cross, bored, frustrated and many more emotional states. Everything except calm. I wonder if she does it when she feels visually unable to orient herself in space. For example: She does it on the swings and while she likes being pushed on them, it is probably a pretty strange experience if you can't see what is going on around you but you know you are moving all the same.

We went to another Osteopath today. The one last week was too far and I had to pay for 3 hours of babysitting for Emily just to take Charlotte. For a not for profit, it ended up costing me over £60 which is a bit steep for something I am not even seeing a difference in. There is a college locally and they offer a free children's clinic so I took Charlotte along to that. They were very nice but they don't do cranial-sacral which is what I wanted. I should have asked but because they are students, they aren't able to do it. So I think I'll stop with the laying on of hands and wait for her to start walking. In the meantime, I'll mention it at the next round of Drs visits coming up in September.

I feel a bit like I have Munchousen Syndrome by Proxy. I feel like I am getting all this attention by having a "sick" baby. Nothing is simple when giving a medical history and the list of practitioners that I take her to is long.

Separation anxiety

Charlotte is at the age where she is experiencing separation anxiety. When you don't experience something with the first kid, it seems harder when you do experience it with the second kid. Charlotte's separation anxiety may be worse than usual because she can't actually see me across the room. Every time I sit her down on the floor she starts to cry. This is probably because she thinks I am going to leave her on her own. She is probably right. I am trying to talk to her the whole time I am not right with her and also to sit her down and not leave her on her own every time. I am sure that this will pass, it just feel like forever when in reality it has probably been two days. Funny how they have to become less independent in order to gain their independence.

Blind as a bat

She really is. I don't say it in a mean way and I know she can see a lot, but Charlotte's blindness is becomming more apparent to me as time goes by. I wish I could keep her as a little baby forever and then it would be normal for her to be completely dependant on me. I am going to struggle to move her toward independance as she gets older.

The lights and things that the low vision teacher recommended don't seem to be holding her interest very much any more. She does play beautifully with toys in her close range, she'll happily sit for ages. Her standing is coming along really well and I tested her on it the other night, she was happy to let go with one hand to reach for a toy.

Many of the fears I first had about having a blind child will not come to pass: she won't walk into walls, she will be able to read, she will be able to be independant and mobile and that is all such a gift. But we always want more, don't we?

We have found a wonderful school that I am hopefull the girls will be accepted into. When I say "we have found" that's not really true because lots of people know about it. It is the best school in the country, consistently ranked no 1 in the league tables with 100% of their graduates attending university, 40% of them to Oxford and Cambridge. The founding mission and driving ethos of the school is the thing that impressed me most (more even than the extensive gounds and facilites): it intends to provide an ambitious academic education for women. That's what I keep reminding myself, particularly for Charlotte: aim high (little bat!)

Obvious differences

We saw Charlotte's little cousin yesterday. We get so used to her that we forget just how different she is from other babies. Conrad can see across the room with no problems, Charlotte doesn't bother to look at anything further than arm's length from her face and nothing at all when it is bright. I feel guilty, I feel as though I should spend more time extending her vision. I guess I should stop making excuses and just do it. She's just so content playing with things up close and I figure the rest will come in time.

Something positive that happened yesterday: one of the mothers from Facebook contacted me by phone. I didn't have time to talk but she said I can call her next week.

A real baby!

Charlotte is doing so well at the moment, she is developing beautifully and becoming very active and opinionated. She is trying to grab my phone at every opportunity and gets so mad at dinner time if the food arrives on her mouth too slowly! She is starting to feed herself too and I am trying to bring myself to let her and not care so much about the mess.

When my parents were here, we all noticed a change in her over the month of their stay. It helps that she is getting bigger and her hair is starting to grow too. She seems to be seeing more at a longer distance and in brighter lighting. I am trying not to draw the shades all the time so that she can adapt to more conditions. More about that later.

Future posts: blinds for the blind, red lenses.