Friday, 30 May 2014

dickensian squalor

Revving up to close of play two weeks after I last spoke to anyone from County and I finally have an email from them. They can't find anyone to take N to school in her wheelchair.
I note that you have now ordered an electric wheel chair for N but I am afraid that I have to tell you that the LA has exhausted all options to find an operator which can transport her in the electric wheel chair. There are simply no vehicles available which will be able to do this.   .......   this will mean that the family will have to ensure that N's electric wheel chair is transported to and from school.  
It makes it sound like we're getting her a powered chair for the hell of it, doesn't it? Just to do a few wheelies the playground at lunchtime.

I am so bloody, bloody, BLOODY fed up.

I have written back, but I can't bring myself to put it up here. I've spent a large amount of my time this week writing letters to people telling them how poorly N is and it's just depressing. This batch has included the one to the LEA; one asking Motability to change our policy to an open one, so anyone caring for N can take her places; one to Cerebra asking for funding for her riding therapy.

I feel like a beggar, whining on about how crap our circumstances are, how sick our poor little girl is, how we need all this help and please, please, pretty fucking please, can't you drop a shilling in to the hat?

The Motability van has arrived, though. N likes the tail-lift.

Friday, 23 May 2014

picture this

L's houses!
I am so, SO proud of my wonderful, clever children. 
I've just had an email from the Children's Hospice South West to tell us that the pictures they made the last time we stayed at Little Bridge House have been sold at a fundraising auction for five thousand pounds. I'm all weepy. Although that's partly because L's dancing round the living room shouting "FIVE THOUSAND POUNDS FIVE THOUSAND POUNDS FIVE THOUSAND POUNDS!" so loudly my ears are thinking about bleeding. 

N's feet and L's hands
I was miserable about UKIP and the poor polling turn out and the rain and the escaped rabbits and school transport not getting back to us and the stupid grumbling woman at L's school drop-off and all sorts of stuff. But this is a fantastic end to the week. 
Remember that I'm waddling in the Rainbow Run in aid of the hospice on the 8th of June. And you can donate here

Wednesday, 21 May 2014

futile venting

Dear Community Police Office

Thank you for your letter, sent to all parents, regarding drop-off and pick-up outside L's School. I understand the concerns of the resident who has made the complaint. Parking at the school has been a contributory factor in our choosing to move our severely disabled child from the school to a different local primary, where disabled parking is actually provided for parents. If your complainant is the same lady who has button-holed my husband on more than one occasion as he was unloading our daughter on the edge of the zig-zag lines outside the school, with her two wheelchairs, her three bags and her walking frame, you can assure her that her attitude had the desired effect and we have given up our attempt to keep our child in the same school as her brother.

However, her six year old brother does still needs dropping at school and we are reluctant to leave our daughter, who is at continual risk of choking, in the car unattended whilst walking him up the hill from the village hall car park. We are also reluctant to allow him to walk up from the village hall car park by himself.

Him being only six and all.

If you have any suggestions to resolve our dilemma, I would be most keen to hear them.

Yrs etc

Ranty Lady from Rantyville

Saturday, 17 May 2014

food responsibility, ducks, cricket and cat-mint

Today's quiet day puttering about at home started off okay; but then rapidly descended in to agricultural chaos.

I've weeded the asparagus; caught and killed the escaped rabbit that was eating the strawberries and the spinach; set the mincer up so that B could mince the rabbit; taken a small girl to see the very tiny rabbits and helped her cuddle one; entertained a visitor for tea; sold two pullets; and showed the buyers round my parent stock.

Entertaining the visitor involved getting her to help me catch the duck that had flown across the road on to the cricket pitch, much to the village team's amusement. Luckily they had already broken for tea. 'Duck stopped play' probably doesn't happen very often anywhere else - I'll be clipping her wing this evening.

Rabbit capture/killing also involved comforting a small boy who witnessed the execution. It was badly thought out on my part - I was so stressed about the rabbit squirming away again, as it's done a couple of times over the past week - that I killed it immediately I got my hands on it, rather than attempting to keep hold of it and move away from him. He was very upset and after I had handed it off to B, I sat on the ground with him in my lap and we talked about it.

He was upset because it had squealed. If you've heard a rabbit make that noise, you know it's awful. I hate killing them, partly for that reason. We are open about the fact that we raise and kill the animals to eat; but up until now, he has never seen it happening. He is on board, in the abstract, with the idea that some animals are 'livestock' and they don't have names and they may end up on a plate; and some animals are 'pets' and have names and that won't happen to them. And he knew, logically, that the rabbits came in to the former category.

By the end of the conversation, he was telling me that he *knew* some animals are livestock and we eat them. But he hadn't like the noise it had made and he didn't want to eat that one. And I told him that that was fine, it was his choice whether to eat meat or not.

I wonder, is this something that all children go through, probably to a lesser extent? Realising that the meat on your plate is from a living thing is a big thing, whether or not you are as a close to the process as we are.

I was vegan for a while in my twenties, because I couldn't reconcile eating meat with my abhorrence for preparing it. I felt that if I was going to eat it, I should be prepared to kill and prepare it myself at best; and at the very least, know about every single step of it's journey to my plate.

I told the small boy that we know that the meat we eat has led the best life it is possible for an animal to live. And that he doesn't need to eat it if he doesn't want to; and that I was wrong not to tell him that I was going to kill the rabbit; and that I should have taken it away so he didn't have to see.

And then we went and picked some cat-mint to see if we could get the cat to chase it and start drooling like his Auntie's cat does.

Friday, 16 May 2014


By close of play last night, I still hadn't even had a holding response from the County Council in reply to Tuesday's email. So I put in a formal complaint to the Parliamentary and Health Service Ombudsman. I have a case number and everything.

And then when I came in just now for some lunch, a response from the Learning and Achievement Operations Director was sitting in my inbox, promising to follow up what was going on and get back to me. And a few minutes after that, the SEN Statutory Services Manager phoned me. He had had a copy of my email forwarded to him by school and was calling in response to that.

They are going to go back to the first tender they had, weeks ago, that was so expensive it was dismissed out of hand. He is going to ask for a breakdown of the costs and if it makes sense, rather than just being a company trying it on,* they will take them on, on the basis that they will continue looking for someone more local and therefore cheaper.

This seems to make sense. Why could they not have done that in the first place?

Anyway, I have written a 'thank you for following it up and I have made a formal complaint to the Ombudsman about this because it should never have got this far' email. And I guess we'll see if anything actually happens.

Around all of this, I have spent the day moving livestock. I'm hoping the sun is over the yard-arm; it certainly feels as if it should be.

* My words, he was more formal.

Thursday, 15 May 2014

drawing of lines

I haven't had a response from anyone in the County Council yet to the email I sent on Tuesday. 
Dear Mr <Learning and Achievement Operations Director>
I am writing to ask for your help in getting my daughter to school and to and from her physiotherapy activities.

Our five year old, N, is severely disabled with an undiagnosed, but progressive and life-limiting, genetic condition. We have just moved her (this term) from < > school to < > because < > has a greater breadth of experience and track record dealing with children with complex needs than her previous school. Her intellect and delight in social interaction mean that main-stream school is still best for her rather than sending her to a 'special' school.

One of the other things that was important to us in our choice, rather than < > School, was that County transport would be available for her. This is set out in a letter from < >, our SEN Caseworker, on 17th March. N needs to travel to and fro in her wheelchair, which is the standard type that goes in and out of vehicles. She can also currently travel in a specially adapted car seat, but this has become problematical because she is getting bigger and there are manual handling concerns transferring her across.

It is now going on eight weeks since this decision was made and we are still waiting on County to fulfil their obligations. I understand from both < > at Transporting Somerset and from < > SEN Caseworker, that tenders have been received but they are 'unsuitable'. The latest reason cited is that they can't find a vehicle with a tail-lift.

I appreciate that there are budgetary concerns and I appreciate that eight weeks is not very long in County Council terms. However, in terms of my terminally ill five year old, this is, actually, quite a long time. And it is an additional stress that my family can do without. We are attempting to do our best by N - in fact, my husband is currently taking her swimming at < >'s pool in the absence of LEA-provided transport, in order to keep her as mobile as possible for as long as possible. He will also be taking her to riding for the disabled on Thursday, for the same reason. These therapies, to work on her balance and her muscle tone, are vital to keep her quality of life as high as possible for as long as possible. These are appropriate physical therapies, not merely bones to throw to a disabled child who will lack the life experiences of her peers.

I understand that to the County Council, N is just a minus-figure on a balance sheet. However, to us, and to the people who know her, she is a bright, funny, happy little girl who deserves as much support as she can get, for however long she is with us. We are doing our best to meet our obligations, practically and morally, to our daughter. We would like the County to do the same.

I would appreciate your help in swiftly finding a solution to these issues.

Yours sincerely 

I sent it to the following people:
  • The Learning and Achievement Operations Director
  • The SEN Casework Manager
  • Our SEN Caseworker
and I copied it to our other key professionals and our (most excellent) local councillor.

I am absolutely tanting at this point. I don't think I am being unreasonable in expecting some kind of response, even a holding response.

Because I spoke to our helper from the Somerset Parent Partnership after sending her a copy on Tuesday, I know that N was actually on the agenda to be discussed at the SEN Panel on that day.

However, we haven't even heard about that.

Tuesday, 13 May 2014

a sense of obligation

Real life is over-rated in my opinion.

We seem to have spent most of the time since we got back from the hospice trying to get transport sorted out for N, to and from school.

When we made the decision to transfer her, one of the positives was that the County Council agreed to transport. They would not provide transport to her physiotherapy sessions though, so school and/or us need to sort out getting her to swimming and riding weekly - this is despite her physio being of the opinion that swimming and riding are useful to her, where 'ordinary' PE isn't really. Because, you know, she's in splints and can't actually stand without holding on to her frame.

She needs to travel in her wheelchair, because she is getting too big to 'transfer' in to a car seat and is too weak to climb herself.

Since this was agreed eight weeks ago, we have been to-and-fro and to-and-fro with them to try to find a solution. The job was put out to tender, but the tenders received were 'unsuitable'. Currently the sticking point is finding a tail-lift accessible vehicle. I'm pretty sure that if they do get a tender with a tail-lift vehicle, there will be another sticking point. 'Unsuitable' equals 'too expensive', in my experience.

I have spent the morning writing an email to the County Council, to try to get this sorted. It's taken me as long to find the email addresses out as it has to actually write the damned thing, because the County Council website is clearly designed to prevent members of the public access to any of the staff at all.

I am well educated, articulate, bolshy and on a mission; and my disabled child is still not having her needs met by the support services. What would be happening to her, and to us, if I wasn't?

Saturday, 3 May 2014

guilt pudding

I have a hospice-hangover. Chucked back in to our real world, where I've got to be a responsible adult again and worry about the fact that we've run out of nappy wipes, the milk is about to go off and there's a dead shrew in the bathroom.

There isn't, in fact, a dead shrew in the bathroom; but I'm expecting one at any minute.

It's sunny outside and I have a list as long as my arm of things I should be getting on with; planting seeds, setting eggs, putting the final funny-shaped pane back in the greenhouse door, corralling Mrs Muscovy (who's ducklings have grown enough to be a menace to the garden), sorting out better fencing between animals and vegetables generally*, hanging out the laundry, sorting out the train-set to ebay, re-listing the camper van because the man who bought it turns out to not be able to collect it for another fortnight and has zero feedback, going through the children's clothes to ditch stuff because they have both had growth spurts, and so on.

*draws breath*

All this *stuff* is cluttering up my head. What I want to do is be sitting here writing another chunk of my story. I seem to stew on it for a while and then splurge five thousand words at a time. But all the other things overwhelm me and I feel like I'm drowning even when I'm just sitting writing this and drinking tea.

I think I need a morale officer.

Alternatively, I think I might need to offload some more of my responsibilities. The livestock down at Ma's is still a big stress for me - because we're not on site, things happen and we aren't there to deal with them in person. I am seriously considering giving up the large fowl, or at least only keeping a breeding quartet of Barnevelders, just to keep the line ticking along.

I know I beat myself up about things I can't control. I hear Ma's voice in my head when I feel like this, saying 'I don't know what you DO all day, dear!' and it makes me doubt myself. B says I'm being ridiculous and that what we do all day is what any family with two small children, a micro-holding with lots of livestock, a part-time business selling eggs regularly and a severely life-limited child would do. And that I should shove my self-doubt back in to it's box and lock it, firmly.

I'm even beating myself up for not using this space mostly for humour, as I did with ducking for apples. Instead it's turning more and more in to space for a therapeutic brain-dump; and that being the case, I'm grateful for those of you who have stayed with me. Sometimes, I don't feel that I have the humour in me any more. I look back at some of my posts from five or ten years ago and I it seems as if I am reading the life of stranger.

These days my main aim is to get from dawn to dusk without a meltdown by one or all of us, on whatever level - physical, emotional, spiritual. I feel dull and I feel empty. I know logically that it's because my entire system is running in 'survival mode' and that it's entirely understandable given our circumstances blah blah blah. But on days like this, when the sun is shining and the blackbirds are feeding their babies in the bay tree outside the window and the whole garden is bursting with life, I deeply resent that I no longer have the energy to respond to that in a positive way.

That's enough, I think. I will go and plant some tomato seeds instead of wallowing.

* which I can't do anyway because the sawmill has let me down for about the fifth week running with our delivery