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!)