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!
Sunday, 28 August 2011
Saturday, 6 August 2011
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.
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.
Thursday, 4 August 2011
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!
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.
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.
Friday, 29 July 2011
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!)
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!)
Thursday, 28 July 2011
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.”
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.”
Wednesday, 27 July 2011
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.
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.
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