Wednesday, 25 June 2014

you can't take the sky from me

I feel really weird about the fact that a friend's just-one-year-old has started walking this week. I loved the little video clip my friend posted on facebook of her tottering around, completely determined to make it across the carpet. But I am also having a small but perfectly formed pity party on the behalf of N, because she never even managed to walk like that, back before all of this became a three ring circus.

I don't want my friends to stop including me in those sort of moments of joy in their own lives and feel they have to self-censor, because that would be crap quite frankly, for both them and for me. I think it's probably a perfectly normal response and I don't want to blow it out of proportion. But it's still there.

I think that I have been more than usually introspective about it because this afternoon I spent a while talking to a chap called John Vorhaus, a philosopher from the Institute of Education, who is working on ideas around disability. He found my 'Welcome to fucking Holland' piece whilst researching the original 'Welcome to Holland' by Emily Perl Kingsley.

I was surprised because he seemed to think that I was voicing a very edgy and radical thing that I might get flack for. Essentially, his premise was that social constructs around disability mean that the first thing people say when asked how they are coping is 'I'm doing fine' and that carers are very reluctant to say that they are having an utterly, utterly crap time, are totally exhausted and are almost at cracking point.

My experience, though, is that there is an Inner and an Outer world.

The 'Inner World' is one of the people who understand how you are living. It is composed of people with similar lives that you meet at the hospice or the disabled parent support group; in the Consultant's waiting room or at the Wheelchair Skills Training Course. Even, as happened with us last weekend, riding a pony past where we were picnicking up on Exmoor. You may also have a few close friends that are also in your 'inner world', who you can vent to, who get it.

Your child's professionals may or may not get it, it depends on their experience, their empathy and how closely you work with them.

And then, there is everyone else. They are in the 'Outer World'. They are the people who you keep a smile in your pocket for*. When they ask how you are doing, you don't tell them that you were awake four times turning N in the night and then spent twenty minutes scrubbing feed off the carpet and had to bath and change her before you went out because she tried to help you hold the bolus and her co-ordination was so poor this morning that it went everywhere, so you were late taking L to school again and he was unsettled and didn't want to go and you were late getting back to pick N up to take her to her short-notice Orthotics appointment you got because her splints are so painful that she can't walk in them - and therefore at all - and so you didn't have time to park at the hospital and you fumbled getting N from the car seat to the wheelchair and ricked your back and she was grumpy and wouldn't let the Orthoticist look at her feet without you holding her whilst she screamed and ... so on.

You just get the smile out, paste it on and say 'Oh, we're fine! How about you?' Because you know that if you do start talking, you'll start crying with exhaustion; and they aren't close enough to you to have to deal with that.

I have to trust you a very great deal to let you in to my inner world  in real life; and I suspect that most other parent-carers are the same. On the one hand we are desperate for practical help. And on the other hand, we have that creeping fear that so many 'ordinary' parents have that we are not good enough for our children and that if we tell people how truly desperate we are feeling and how close to the edge we sometimes are, then our children will be taken away as a worst case; and that as a best case, people will think we are weak.

B and I are lucky. We are an effective tag-team. In fact, B is currently trying to get N to go to sleep; I have just done a forty minute shift, which included the usual giraffe-kissing. But on top of that I had to remove three flies from the room. She is terrified of flies and bees and becomes hysterical when they are in her bedroom. B is on shift two. I don't think there are any left in there; but she's in such a state now that that doesn't matter. If I was a single parent, as so many parents of disabled children are, I'd be hitting the gin by this point.

This life, this twilight zone that we are inhabiting, is dim and difficult for people outside to view. I think that that is part of the reason that our relationship with B's parents broke down so comprehensively. They simply didn't get it. Family quite often don't, as far as I can see. They have all their historical preconceptions about you to get over as well not inhabiting the Inner World themselves.

So I say, to you 'Outer World' people who may read my piece that actually, parents-carers of disabled children do talk about this sense of desperation, of grief, of mourning even, for the child and family that we could have had. We do talk about our sense of failure, of our exhaustion, of the sheer frustration of having to ring the County Council for the umpteenth time to chase up something that should have been so simple and so someone else's job. We talk about the anger and the desperation.

We just don't talk about it with you.

And it's not because we are deliberately excluding you - at least, that's not my reason**. It's just that it's such a huge thing to explain that it's simpler to paste on the smile and talk about other stuff - to smile at your baby's first steps along with you and share the joy of the simple ordinary thing that we didn't have ourselves. And in actual fact, I consider the friend who I am talking about - and who I hope is reading this - one of my Inner World. I feel privileged to be able to share that sort of stuff with her and I feel safe enough to open up in real life, rather than through the relative anonymity of the web.

Looking back at 'Welcome to fucking Holland' now, I can see that I was in a very dark place when I wrote it - I was at rock bottom. And since then, we have had a lot more support put in place, we have a routine visit to the hospice every eight weeks, we have respite care about to kick in fortnightly, school transport has finally got itself sorted out and N's new school is working out brilliantly for both children. I still feel like that occasionally; but I am in a much better place about it now. Retrospectively, I feel that it was a position I had to go through in order to come to terms with what is happening to us all.

If serenity is my aim, then Reinhold Niebuhr's prayer speaks for me:
God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
Reinhold Niebuhr (1892–1971)

My friend Emily's phrase, not mine.
**I think it's really important to state that this blog is my life, viewed through my rose-tinted spectacles. I can only speak for myself and voice my own experiences and feelings. YMMV, not every disabled family is the same, not every child is the same, not all friends are the same. Etc etc etc..

this much I know

On Monday, we went to Bristol Royal Children's Hospital for N's six-monthly Neuromuscular Clinic appointment. They have run out of stuff to test for and are referring us to Great Ormond Street. There is a team of four consultants there who will do an in-depth set of assessments and report back to either Bristol or Musgrove.  It will be a possible two or three day stay, with accommodation at the hospital.

Things they may ask for include a Muscle MRI and more DNA tests. If she has a muscle MRI they will probably do another brain MRI to compare to last year's one that revealed the issues with the Cerebellar Folia. Because she has a mix of muscle weakness and ataxia (ie, lack of muscle control from the brain), they are focussing on mitochondrial conditions.

The consultant said that issues with the Cerebellar Folia can only be seen over time and "I was expecting to see a swifter progression* and having seen her today, I am pleased to be seen to be wrong". Progression of conditions involving the Cerebellar Folia usually display physical deterioration before cognitive deterioration. Her reluctance to close her eyes, for example when you wash her hair, is probably a product of the cerebellum issue - her other senses are working doubly hard to make up for the fact that her balance is shot.

Her Complex IV enzyme is very slightly low, so they are going to retest that to see if it was an anomalous reading. Again, a low level of Complex IV points to the issue being with the mitrochondrial DNA. Mitochondria are symbiotic bacteria tied in with DNA. Cells need mitochondria to provide them with energy. Mitochondria get energy from five different Complexes, which create the energy via something called a 'Respiratory Chain Complex'**. If the Mitochondria aren't getting the energy they need from the Complexes, then the cells aren't getting the energy they need and her brain therefore can't develop properly.

As I understand it, a lack of a particular enzyme is just a throw-down in the genetic lottery, a blip in the matrix if you like. There is currently very sparse treatment for this sort of thing, but for one particular thing you can have injections of something called Co-Enzyme Q, which helps. They are going to start testing for that, by the sound of it. It's on my list to ring up about tomorrow.

So. Now you know as much as I do.

* ie, deterioration in her condition
** absolutely nothing to do with breathing. Think of it as something that allows mitochondria to breathe, that kind of works.

Friday, 20 June 2014

imperialist leanings

Did I mention that I have taken possession of two British Giant rabbits that needed a new home? They are gorgeous and very tame; two does of about a year old. Also, big.

The task this weekend is to make a pen for them and for the existing Two Mrs Rabbits in a spare corner of the garden. I have been doing some reading around the concept of keeping rabbits in colonies rather than in individual hutches and I have a space that is about twenty four feet by eight feet that would be ideal. To start with, it's in an unused corner of the garden and there are very few plants there to be rabbited. I am very conscious that we have a lovely garden and I want to keep it in good condition. This corner gets over-run with nettles and thistles every spring and I have toyed with various ideas for it. The current hot weather and the obvious discomfort of the New Zealand Whites in their hutches has brought me to colonies.

I have four does and a buck, plus one rescued buck that is being castrated on Tuesday*. In the last twelve months, I have put the two original does in kit three times. They are averaging nine kits per litter, each. The kits can be killed at eight weeks, as 'fryers', where you use the back legs and the rump as you would chicken wings. Or you grow them on until about eighteen or twenty weeks, when they are 'roaster' and can be used for pies or mince. In practice, we are mincing most of ours, because that is the most versatile form of meat if you have small children. Rabbits can kindle pretty much the nano-second they give birth; so clearly I won't be able to keep a buck in with the does and I will have to separate the youngsters out at twelve weeks.

At this point in my research I started to think it was all a bit complicated.

The downside of colonies is that you don't get as up close and personal with the does as you do in hutches; so you don't handle them as much and you don't get to see what condition they are in under their fur. If you keep the bucks and the youngsters in the main colony, you end up with uncontrolled breeding and that is a Bad Thing with any livestock.

On the plus side, the additional space gives the rabbits room to run around, to jump and to keep busy. It's a much more natural and therefore less stressful way of rearing them - and if I am going to rear my own meat, then I need to do it in as humane way as possible. Otherwise I might just as well be buying Tesco two-for-a-fiver chickens.

So my plan is to create what I am hoping will be the best-of-both-worlds. I am going to have a main colony for the does and their kits up to twelve weeks. Then I will have what seem to be called 'grow-out-pens' for the youngsters, with the sexes separated, from twelve to twenty-ish weeks. And my buck will be in a smaller hutch-and-pen setup inside the colony, so he can hang out with the does but not mate them**. Does to be mated can be popped in with him, so I can keep track of who's due to produce when. And poor castrato Bungo will go in with the does as a kind of rabbit eunuch, to provide sherbet and frozen grapes at appropriate intervals.

I can't see myself every wanting more than four does. I wouldn't have ended up with four except these two lovely ladies turned up on one of the facebook groups for rehoming. I am going to put them to our NZxCalifornian buck initially, just to see how they are as mothers; and then I am going to look in to getting a British Giant buck for them and phase out the NZs if the Giants grow to a good killing weight in a reasonable time. Commercial does breed six or even seven litters a year; I don't want to do more than four, probably only three. Having at least two does that kit at roughly the same time is good because you have a foster mother to take over if one has problems. Hand-rearing baby rabbits is a ball-ache and not dreadfully successful.

So there you go. Tomorrow is Colony Construction Day. I will try and remember to document with photos.

I am very much trying to focus on the positives in my life at the moment. I live in a beautiful place. I have beautiful children. My family are extremely supportive and very close by***. I am gardening and raising animals, which is what I have wanted to do since I was at school thirty years ago. I need help to do it effectively currently, but that's okay. It has been a lovely few weeks of summer weather and I am planning a weekend trip out with the children to Big Fun Place which is a spot on Exmoor with a stream and place to picnic. Despite all it's challenges, there is a great deal of positive stuff in my life.

And now I need to go and remove the rabbit from the coffee table and the child from the bath.

* I am using my birthday money to fund this. For my birthday, I am buying a rabbit a castration.
** I will probably need double-wire to ensure that this doesn't happen.
*** Although quirky and emotionally constipated.

Monday, 9 June 2014

formal complaint time

I hate that this has got this far, but I haven't heard anything from the county since I had a holding response a week ago, so I have made a formal complaint. I also contacted a couple of local media outlets late last week, but haven't heard anything from them. I'm relieved in a way; it's just another thing to cope with; but I really have reached that peak of frustration.
To whom it may concern

I would like to make a formal complaint about the behaviour, actions and attitudes of SCC regarding school transport for my disabled daughter.

My daughter is five years old and is now a wheelchair user. When she changed to her catchment school three months ago, it was on the understanding that the LEA would transport her. This was agreed in a letter dated 17 March 14, from our SEN Caseworker.

Our most recent communication, on 2 June 14 from the SEN team, said that the LEA were unable to transport her wheelchair to school or to provide an escort for any sort of taxi service. I responded to this email saying that in the short term, we would accept this method of transport; but by the new school year we would expect the LEA to be able to undertake their legal responsibilities and take her and her wheelchair and her other equipment to school. I received a holding response and have heard nothing else in the interim five working days.

Not only is the county council's response time appalling, you seem to think that a holding response is all that is necessary to any correspondence.

I understand from local taxi firms that the LEA have a structured amount that they pay for school taxi services, based on how long the children are in the vehicle. Because we live in a rural area, there are no appropriate taxi firms close to us and no 'cluster' of nearby children to use them to make it cost effective. Therefore transporting her is going to cost the LEA more money than they want to pay.

My daughter is being penalised because the LEA do not wish to spend the money to support her. SEN say that she entitled to transport. We are in catchment, so she is entitled to transport. Equal Opportunity law says that she is entitled to the same treatment as her peers; therefore her wheelchair, which is her main form of mobilisation, needs to be transported - when she gets her new chair, she will travel in it. SCC policy is that disabled children stay in mainstream whenever possible - and if the school can support her adequately, I see no reason why we should move her to a local special school when it is not in her best interests, simply because the LEA do not wish to pay for transport.

I will be escalating this complaint until we get resolution. I will also be complaining to the Local Government Ombudsman if I get an inadequate response from you and I am taking advice regarding our legal position under the Equality Act 2010 in order to get this resolved. I want my daughter to have a normal life for as long as she is with us and I do not wish to spend my time writing these kind of emails or speaking to the media - it wastes what little family time we are going to have with her.

Yours faithfully
There you are. It says on the response I have got from the automated reply-bot from SCC that by replying to, or sending an email message to Somerset County Council, you accept that you have no explicit or implicit expectation of privacy. So I feel like it's okay to copy it here. It helps me keep track of where I've got to, as well, without having to trawl back through all my emails.

In other news, we were Rainbow Runners at Exeter Racecourse yesterday. N liked her dress, had a sausage and an ice-cream and was slightly confused about what was going on. I walked two thirds of the circuit before flaking, which was more than I thought I'd do when I got there!

Many thanks to all our friends who came along and either joined in or cheered, you are fab.

Donations page is still open!

Friday, 6 June 2014

social interaction

We had a visit from our social worker yesterday, to catch up with how things have been going over the last few weeks.

Pretty crummy, is the summary.

For the last eighteen months or so, we have been receiving four hours per week respite care through the Direct Payments scheme, which a) isn't enough now and b) we're currently not getting anyway because the lady who was doing it for us had to give up. She was taking N out for a day every other weekend, so that we could spend some time with L and each other.

We discussed swapping to a different scheme where Social Services provide and employ N's 'Supporter' rather than us being given a budget to manage and finding our own helper. It's proving impossible for us to find someone to take on the role; so we are going to go with that I think.

We also discussed a 'supporter' coming in at night every so often so that we can get an unbroken nights sleep, because it's slaying us. B is mostly getting up to N when she wakes and needs turning; but her crying still wakes me. I feel like I did when they children were tiny and not yet sleeping through - that hazed, dull round the edges, cloudy state where you are continually sub par*. I reckon that B actually feels worse. You can only go on being the stalwart person who is keeping everything together for so long before something has to give.

We have both been and done the Farmers' Market in Minehead today - I haven't been going because I've been so knackered. The theory is that we can both go and get some actual interaction with people who are simultaneously taller than three feet tall and older than six, whilst spending a bit of time with each other. Ten years ago I would never have said that one of my goals was to be able to spend a whole day at work with my husband on a weekly basis. But by increments, our goalposts have moved closer and closer and now, it's the little things like that which are keeping us going.

This Sunday I am doing the Rainbow Run at Exeter Racecourse in aid of the Children's Hospice Southwest. We have guests coming tomorrow night who are also taking part. We are cooking rabbit paella for them; but first we have to catch the rabbit.

* Only without the raw nipples from breastfeeding

Tuesday, 3 June 2014

it's not the size of the ship that matters

I have decided that I haven't actually got a writing technique, per se. I just seem to need to let everything bubble along inside my head for a bit and then clear the decks by downloading all the kibble that's floating around in there on to the blog. And then off I go. I managed six hundred words yesterday by the time I'd finished feeling crap about transport, worrying about the escaped rabbits eating my turnips, dealt with two potential poultry purchasers and failed to plant out the cucumbers.

At close of play last night I had a holding response from our SEN Caseworker by email, saying that they are in 'discussions with colleagues' about how best to support N. I responded with a thank you and got an out-of-office auto-reply saying they'd next be in the office on Friday. So I'm trying to let that go until later in the week.

Anyway, today.

Today, I have attended to the life machines - dishwasher, washing machine, tumble-drier. I have fed and watered all the livestock, which takes on average an hour. I have caught one escaped rabbit and failed to catch another. I have finalised my list for the poultry auction tonight. I am in the process of checking what hatching eggs I have available for a couple of potential buyers. I have emailed a couple of potential helpxers. I have sorted out what I wanted my fortnightly garden maintenance team to get on with. I have signed and shared a petition to stop fracking in North Somerset. I have phoned Ma to wish her happy birthday and arranged to go and have cake this evening. I have checked and updated my waiting list for chickens and realised I have another hatch coming out at the weekend.

I have also had five cups of coffee and I am now going to get my head down and actually write some stuff for a couple of hours.

Monday, 2 June 2014

some are more equal than others

This is the email I sent to our SEN Caseworker, her boss, the Director of Learning and Achievement Operations and cc'd to our local councillor and MP on Friday afternoon, in reponse to the SEN's email I mentioned before the weekend.

B has just started phoning down a list of Taxi companies with wheelchair accessible vehicles in the local area. The first one he spoke to hadn't been contacted by the LEA and has gone away to see whether they can help.

Why are we having to do this ourselves?

Dear <SEN Caseworker> 
I do appreciate the difficulties that County has been experiencing putting transport in place for N. However, it is simply not acceptable to say that a child who needs a wheelchair as part of her day to day mobilisation is not able to have that wheelchair transported to school.

We have not simply 'ordered an electric wheelchair' for N as a nice, cheery, optional toy for her to take to school with her. She has been referred to the Exeter Mobility Service for an electric chair because as she grows, she is losing the ability to walk. My child is losing her ability to walk. To move around. To get in and out of chairs and cars and her bed and the bath. Already she cannot walk independently. And already walking with her Kaye Walker exhausts her. Being in a powered chair saves her energy that she can then use to do things like hold a pencil. Feed herself. Swallow. And ultimately, breathe. Her day to day kit is, this half term, also going to include a suction pump in case she cannot clear her own airways.
I know that mainstream schooling is the County's preferred method of education for children like N. It is certainly our preferred method - I cannot emphasise enough how much N's speech, language and general confidence has come on in the short time she has been at <school>. Mainstream is the right place for her, because she is an intelligent and sociable child with no behavioural difficulties, despite her day to day challenges. 
Her powered chair is going to arrive in twelve to eighteen weeks time and by then, I expect County to be able to meet their legal obligation to take her to school, with the appropriate equipment to enable her to get the most out of her day.

Until then, we will go with option one on your list - N to travel to and from school in a LEA provided car-seat, without an escort. The driver will have to be prepared to lift her in and out of the car seat because she is not always able to do this herself if she is tired; her current weight is just under 13kg. The driver will also have to transport both her small electric wheelchair and her manual wheelchair in to school on a Monday, bring them back on Tuesday afternoon and then take them in again on a Thursday morning and bring them back on a Friday afternoon. Her Kaye Walker also needs to go with her, as does the suction pump. We will do this because it is important for her to have the sense of independence that transport to school will give her; as well as being one stress that we as a family do not need to deal with.
I am extremely angry that I having to put so much of my time and my energy in to chasing SCC to meet their obligation to my daughter when I should be spending that time actually being a mum.

I look forward to hearing your thoughts regarding the SEN team declining to transport a disabled child's main form of mobilisation to school.

They are backing us in to a corner about this and I am running out of options. The Somerset Parent Partnership have suggested that we try to find someone to Advocate for us and are putting some feelers out on our behalf.  It was they who suggested phoning round a list of accessible taxi companies and seeing what we came up with. The lady I spoke to, who I had cc'd a copy of the email, told me that she had showed it to her managers and colleagues and the consensus is that the County Council are in danger of breaching the Equality Act by not providing N with appropriate transport.

I am so angry and I am so exhausted with fighting for all of this.

Sunday, 1 June 2014

party on, dude

Yesterday we hosted a small children's party. Small in all senses of the word - average age was six and there were eight of them, including younger siblings. There was bouncing on the new-to-us trampoline and a screaming water-fight that featured a paddling pool, a hosepipe and one child thoughtfully getting in to said paddling pool whilst wearing his socks. After that, everyone dressed up in various hats, blankets and tea-towels and were Egyptian Kings In Disguise.

No-one was sick and there were only two screaming tantrums, both of which were by my children, so that was okay. Kind of. 

All in all it was a success and I might do it again. 

Today, we have been chilling out in the sunshine in the garden, taking turns with the hammock (mostly me) and the trampoline (mostly L). I definitely made the right decision to not pursue gymnastics as a career.

It's been a nice, normal weekend and I wish more of our days were like this. I just felt that I needed to register that with the world at large, since I seem to spend a lot of time here whining on about how tough things are.