Wednesday, 24 December 2014

the land doesn't change


I am curled up in front of the fire this morning, fighting off a migraine and trying to sort out the music library on my laptop so I can play some carols through the stereo. In the meantime we have seasonal DVD on. Silent Night is playing at the moment, which always brings me to the brink of tears - my maternal grandmother died in the early hours of Boxing Day in 1990 and one of my final memories of her is of the hospital choir gathered around her bed on Christmas Eve.

I find it very hard to look forward with hope at Christmas and New Year. However, when it comes down to it, that is all you can do. You can't just stop.

In the second half of this year, two amazing women that I first 'met' through blogging nearly ten years ago have lost their partners. Watching them continue with their lives one day at a time in the face of their different griefs has been an inspiration to me, even through the window of social media.

Other friends have coped with other things - large difficulties and small sadnesses, day to day and month to month. We all just keep moving forward, a step at a time - sometimes the step is as big as a week, sometimes it's a day. Sometimes it can just be moving along in five minute slices of time and breathing in and out.

I'm not sure what I want to say here, really. I think I'm just putting a marker out there to acknowledge that a lot of the people that I see as part of our family of choice, or our friendship and support network have also not had the easiest of years. And that together, we have made it through. Of course there has been happiness and joy in large measure as well and it has been a pleasure and a privilege to share that with the same people.

Looking out my window, I see the fields stretching in to the distance to the Blackdowns and the winter sunlight casting it's long shadow from behind the hedgerows. There are already catkins on the hazel. The hens are coming back in to lay. The wheel is turning and we have made it to the top. The days will lengthen now and although we still have January and February to get through, from here it is downhill to the spring.

Underneath us all, under all our happiness and all our griefs, the bones of the land remain the same. Slow and steady, warming and cooling in a perpetual routine with the fading and returning of the sun. Those hedges out there have had the winter sun through them like this for a millennia. People in this village have looked across the Vale and seen them same outline of the hills beyond for longer than that, probably. We endure, as does the land beneath us.

You lot out there, who have been there for us this past twelve months in whichever way, you are loved, very much.

Friday, 5 December 2014

statement of festive intent

Right then.

Let us take a moment of silent acknowledgement to pay tribute to the fact that I have actually put aside this morning to clean the house.

Thank you. Now we can move on to my displacement activity (or what I am doing whilst I wait for the dryer to finish, I guess?)

Because of Circumstances, we are going to have a financially curtailed Christmas. I'm cross about it but I am also determined to give the children the best bloody Christmas ever, thank you very much, despite everything; because it's not about cash and presents and material stuff, it's about family, peace, hope, joy and love. I've never bought in to the 'mountains of gifts' things; I am angry because that option has been taken away from us should we have wanted to splash out a bit.

However, although we have no liquid cash, we have a tank half full of heating oil, a log-store full of logs and a freezer full of food. I have ten cockerels ready to slaughter so I don't need to worry about buying a turkey or a goose. We have decorations in the attic, including an artificial tree I bought last year in the sales when I saw my arse about getting pine-needles out of the sofa. We are going to the hospice for New Year anyway, and will get looked after there.

So here is my plan.

1. Get the decorations down from the attic tomorrow and start putting them up. Not doing the tree until next weekend, but I like having the lights up.
2. Christmas music on the stereo from now on.
3. On Sunday, SWAN are having a Christmas get-together in Bristol. It's free and I think we can budget for the diesel. B is all set to take the kids even if I'm not up to going.
4. Next weekend we are baking Elizabethan Gingerbread shapes to hang on the tree. We did this two years ago and although they were so hard they were practically inedible, they smell *fantastic*. I also have plans to make paper chains with the kids out of coloured paper we have stashed in the Make-and-do Box.
5. School Nativity is mid-week next week. N is on percussion. Be scared, school, be very, very scared.
6. We are going carol-singing at the steam-train station with school tomorrow afternoon. I have plans for Possets-and-biscuits when we get home.
7. Before all this hit, we had arranged to go and see Santa the evening before Christmas Eve at Hestercombe Gardens. Still going to do that. The garden are lit up. I am going to take a thermos of cocoa and biscuits to have there post-Santa.
8. We are going to Ma's for Christmas Dinner itself I think.
9. I am watching a couple of wooden marble runs on eBay for N. We are all about the marbles.
10. I plan to make truffles and little gifts like lavender pillows for friends and Ma and Sister Natalie.
11. I have an elaborate and too-pornographic-to-blog-about planned present for B ;).
12. L wants me to knit him some mittens. I have the wool for it, I just need to make the time.
13. The kids like doing wet-felting. Expect lop-sided felted superheroes, everyone who knows us.
14. We have various films - Nativity, It's a Wonderful Life etc.. And B has found Box Of Delights on youTube, which the children are entranced with.

So stuff the cash. I can scrape together enough for a few books and sweets and stocking fillers. Sister Natalie reliably buys the children lovely, lovely presents and they aren't going to go without. We found a stash of games in a charity shop last month so we can play chess and monopoly and scrabble til it's coming out of our ears. I also have a box of wine left from my friend's visit in the autumn when she did a Lidl-run on her way over from France. I have mulling spices.

If you know us in real life and are passing, drop in. Open house. Tea and biscuits on demand. Friends old and new welcome - provided you don't mind being sent away if we are up to our collective arses in muck and bullets.

Bring it on.





Tuesday, 2 December 2014

dark & light


The last week has been frantic; lots to do and people to catch up with, but we have at least managed to approach it all a bit more calmly after having a break.

In summary, a lot of quite stressful things:
  • I have gallstones and need my gallbladder out - I had a scan. This explains why I feel sick all the time and have been getting abdominal pain.
  • B's parents have served us with court papers regarding contact with the children because our best attempts to sort it all out via mediation didn't work out. Merry-fucking-Christmas - Legal Aid doesn't exist any longer and we're going to have a severely curtailed few months to pay for a solicitor. I will not be writing any more about this for obvious reasons, but it's all still going on in the background. 
  • Social Services have finally been in touch. They have replaced the Social Worker who was so confrontational with another one and they want to come and have another assessment meeting. We have said that that is fine so long as our advocate can attend. Children's Services in Somerset are in a right mess generally and I think some of the hassle we have been having has been part of the fall-out from that.
  • N had casts put on her feet and lower legs yesterday. This is positive in that it will correct her leg/foot position and therefore help her mobility. On the down side, though, she has to be recast every Monday between now and the New Year and, despite being a very fetching shade of hot pink, they are really, really uncomfortable to sleep in. She screamed literally ALL night and we are all absolutely ragged this morning. Hopefully she will get used to them quite soon. 

At more length, some positive things:

Our first sleep-in with N's carer on Friday night went extremely well. It was a 'waking night' because N was so restless and so she went at 8am rather than taking N our for the morning. I woke once and so did B, to administer Calpol and check on her; but the rest of the time my subconscious seemed to be happy to let E get on with it and trust that she'd wake me if needed. I am so, so grateful to our friends who have made this possible for us by starting and or joining the Hundred Club on our behalf. It means that E will be coming in once a fortnight and we will at least have that much guaranteed sleep. I am still furious that Social Services are not sorting this out; but I guess that this is 'Big Society' in action - government lets you down, your community picks you up. We are lucky to have friends like this and I can't really express what it means to us to know we have that support - and that belief in us. I have taken the conscious decision not to ask who is involved because a part of me feels awkward accepting charity from friends. But I am still very grateful. I hope that makes sense - I know it's not entirely logical.

Also charity - the Well Child people phoned yesterday. They are going to come in January and revamp the area around the patio in to some raised beds so that N can do some gardening. She can no longer get down on the ground to garden in the 'ordinary' beds and she does enjoy it. There is also a suggestion that we could put a tiny bantam house for some teeny tiny bantams up on a level that means she could collect the eggs etc.. I have some Barbu d'Anvers bantams that would be a perfect size to fit. They are coming to do a site visit in the first week of January. I need to speak to our landlord; really hoping they are going to be as good about it as they usually are about this stuff.

We have had a brilliant weekend. Sunday was a beautiful day and we went up to Fyne Court on the Quantocks and had a leaf-collecting competition. The boys won with fourteen versus our thirteen, but no-one was particularly upset - it was more about chasing each other along the wheelchair path and seeing if there was anything in the pond worth dipping for. It was one of those 'golden days' that stay in your memory for ages.

We are taking a less proactive approach to dealing with our three-dozen-ish professionals. We are going to try to have one day a week as 'appointments day' and herd them all in to that*. That will mean that we have more time to spend on basic, day-to-day stuff.

For today, that is all. 



Apologies if you are one of our professionals reading this - I am picturing you as perfectly charming Maine Coon cats that can be tempted with small titbits rather than ornery sheep that need your heels nipping, honest!


Tuesday, 25 November 2014

kindness of strangers again

We have had a holiday. A proper family holiday.

We went to the hospice for four nights, then we spent six nights at the Finlake Holiday Park near Torbay, courtesy of the Torbay Holiday Helper Network. The hospice is always a much needed break and gives us time to sleep and spend time with the children that isn't just about making sure all of our basic needs are met.

The holiday was something else. I was dreading it in one way because of the change in routine - I was worried that N wouldn't sleep and that it would rain and we would be trapped in a damp static caravan with two cranky and overexcited children. However that wasn't what happened.

What happened was that the caravan was huge and heated and lovely with lots of toys and games and DVDs. There was a fully stocked fridge with vegetables and meat so that we didn't have to plan meals or shopping. There were sheets and towels and a fully equipped kitchen with a hand-blender so that we could blend food for N's tube. There was a big file of leaflets from local businesses that are part of the network that donate free entry or meals to families who are staying. There was a letter with contact information for other people like massage therapists who offer free sessions to guests. There was free entry to the swimming pool on site and half-price riding sessions for the children at the local stables.

It was amazing.

When we decided to take up the holiday offer, B and I were determined that the children would have a memorable time, regardless of our sleep levels and stress. However the fact that everything was just *laid on* for us and there was nothing to plan or struggle with made it wonderful for us as well. We were in desperate need of some time out of our routine and really miserable and feeling unsupported by both family and social services. The day-to-day interactions we had with the members of the THHN made up for some of that - truly the kindness of strangers who had no connection with us personally except a desire to help families like ours.

We have come back feeling as if we *do* matter, as if we *are* being heard and acknowledged and have simply been held a bit, just for these few days. It has made a big difference to how I am feeling about the things we have come back to - the usual grim grind of meetings, phone calls, appointments and letters.

But I'm not going to talk about those, in this post. I am going to talk about the good stuff.

We have decided to make a few further changes to the business, to consolidate the remainder of the birds here rather than down the road at Ma's. This will mean more time for us and less pressure to keep everyone else happy rather than pleasing ourselves.

We have a new helper arrive who is very pro-active and efficient at the outside work - she is currently putting compost on the garden. Having the vegetable garden bedded down properly for winter will mean that I don't have to dig it in the spring and can just get planting, which will a) be fun and b) mean that we will save money because we will have lots of our own food.

The children are both very settled at school. L was happily telling the hospice staff how much he liked it; massive relief. It turns out that his mild sensory issues are helped immensely by squishing him with a large gym ball for a few minutes - he is then much calmer for ten to fifteen minutes. It's amazing. And, obviously, consensual ... non-consensual squishing is bad ... he is very keen on having it done. He is also enjoying hanging from a chin-up bar in the doorway, which has the same calming effect. Once again, thanks go to the Integrated Therapies Team in Taunton for diagnosis and practical advice.

B and I have had a chat with the counsellor from the Compass Team this morning and chewed over the idea of trying to organise more frequent breaks for the two of us. I didn't realise how stressed and wound up I had become until I throttled back down a bit.

This morning I have woken up to the fuss about Jack Monroe's tweet re David Cameron using his disabled child to shut down debate. I think she is right. I think that his experience of having a child with complex needs is so very different to mine and those of families like mine. We are all different. Our children are different. Our needs are different.  None of us can really speak for the others of us. We do not speak for him. How dare he speak for us?







Friday, 7 November 2014

there are no elephants in my alps

I'm a bit stuck, words-wise - it's been an incredibly stressful week.

L has been settling in to his new school - it was never going to be an instant thing, but we're getting there I think. The school are a million times better at communication than his previous one and have an understanding of sensory processing issues, which is a big step forward. Also, they don't appear to threaten parents who write about their school experiences on the internet with the wrath of the County Council in vague and portentous terms, so that's also an one hundred percent improvement.


The Social Services OT has visited to fit N's sleep system and discuss ceiling hoists in her bedroom and the bathroom. The sleep system needs tweaks - I was up three times turning her last night, but I think we will get there eventually, it's just a matter of fine-tuning. As far as the ceiling hoists go, it depends on the joists. There's a man coming to look.


The same OT has put the stop on N going riding and swimming from school. This is because they say that she can no longer be lifted in to a normal car seat - because she weighs more than fifteen kilos - and is not able to safely transfer herself from her chair to a car with the help of an adult - although we tried it during half term and it worked okay. One of her concerns was that N would get wet or cold doing it like that during the winter. This leaves school in the position of not having budget to hire a wheelchair accessible vehicle to take her. They are going back to the county council to try for more funding, on the grounds that if N was at the local special school, she would get a wodge more cash allocated to her than she does at the moment; and that could be used for the transport costs. She needs the hydro and riding to help keep her mobile.


We are still going to and fro with Social Services regarding overnight respite. They are now saying that the horrific meeting we had was only the beginning of the review process, not the review itself. Which begs the question 'if that was the case, why was our request for additional support turned down out of hand at the end of the meeting?'. But still. We have been taken on by an Advocacy service and I am just handing it over to them. Any future meetings will be with our Advocate involved. I am cc'ing copies of correspondence to both him and to our local MP. So far Social Services have responded to an enquiry from our MP with a letter that basically says 'because these people suffer from depression they are mental and they need to pull themselves together and spend more time with their children rather than be allocated more support'. No-one has actually bothered to reply directly to me about anything I've written; presumably because I am mental and therefore it's okay to write to my MP about me, but I'm not worth communicating with directly.

After all that, N's physio texted to say they want to start serial casting on Monday. This means a couple of weeks of discomfort for N, but in the long run, a better foot position and easier movement. And today I ended up literally in tears on the phone to the nappy nurse because the re-ordering process is so tortuous. Oh, and the consultant wants a sleep study done now-ish, to determine whether we need a SATS alarm at home for night-time.

There are several things in the positive column.

We had a really nice Halloween party for twenty two six and seven year olds on Sunday, with bobbing for apples, face painting, graveyard cake with jelly-baby corpses, a treasure hunt and trampolining. 

We have been given charity funding for a spare bed for N's room, so that when we sort out overnight care for her, there is somewhere for the carer to sleep. I don't want her room to turn in to a hospital before it's absolutely necessary and wanted a 'day bed' set-up that her dolls houses could live on when it wasn't being used. And because of the kindness and perseverance of one particular professional and her contacts with local charities, that has happened.

We are relying a lot at the moment on kindness, both of professionals and friends old and new. We have a really good set of people in our life, although some of the older friends are spread out all over the country. We are having a really shitty time, with lots of stuff to sort out - although it's moving forward, it feels really overwhelming. 

I have taken on board a new motto, courtesy of Hannibal and his Alpine elephants: "Aut viam inveniam aut faciam" - I will either find a way or make one. There is a way through all of this - through the tortuous practicalities of ordering your quarterly nappy delivery a month before you need them and finding they take two months to arrive; of being told that you are not deserving of more respite because you suffer from depression and should just spend more time with your children; through the broken nights and the paperwork and the phone calls and the appointments. 

And there is also a way to be found or to be made through the emotional turmoil and the exhaustion and sheer distress of watching N become weaker as she grows. Around the alpine feelings of guilt because I cannot lift her from the ground any more to hold her without hurting myself; the tiptoeing around L's questions about why N isn't walking or talking, trying to answer truthfully but without giving him nightmares; fitting in enough attention to our marriage so that it doesn't shrivel and die; curling around rocky outcrops of guilt, exhaustion and blank-eyed terror about the future.

We have no elephants in our Alps. But we do have friends. From those who give us a quick wave when passing in the car or on the internet; the people who bring us vegetables and meals to reheat or invite us round to eat; those who take Leo out for an afternoon when they take their own children to the cinema; to the group of wonderful, wonderful people who have formed a Hundred Club to try and help us pay for some overnight respite care.

What is happening to us is unbearable, all the more so because we have no choice but to bear it. And the kindness of friends and of strangers is making is easier to carry. 

So thank you.






Friday, 17 October 2014

with intent

B and I have been off in Wales for a five night break this week. Ma and my sister had the children and we slept and slept and slept. And watched superhero movies and ate and then slept some more. It was blissful. Over the course of the week I have felt myself gradually unfolding and coming back to myself.

The couple of weeks before we went was very tough. N has had a long period of waking up between three and six times a night and we were both beyond exhausted. I had confided in the hospice how awful I was feeling, which triggered an off-the-cuff visit from N's disability social worker and advice to B that he should not leave me alone with N over the weekend and that he should make sure I got plenty of sleep.

A few days after that, we had a scheduled review meeting with N's Disability Social Worker, staff from the hospice and the Community Nurses. Everyone updated everyone else with N's state of health and how we were coping. We spent a couple of hours on it. The hospice people had travelled an hour and a half in each direction to attend.

We currently get four hours respite a week, which we save up and use roughly every other Saturday - N's carer takes her out and we try and spent some quality time with L. We wanted some overnight respite, so that we could both get some sleep at the same time. One night a week or fortnight.

At the end of the meeting, the social worker said that she was sorry to tell us that they were unable to give us any more respite. They had various reasons to justify this - but essentially they were just that - justifications. They said that in their opinion we are coping; we have respite support from Ma (despite her age); there are two of us and we can take it in turns sleeping on the sofa to make sure that we get a good night's sleep; that we already have respite from the hospice and they take that in to consideration in their assessment; that they are concerned that if they give us any more support it will lead to an 'escalation' and we will need more and more; and that waking between three and six times a night is normal in a child of six. It was clear that they had made the decision before they came and the meeting was just a rubber-stamping exercise.

I was so angry and upset - and distressed -  that I asked them to leave. And B pretty much shouted at them, which is about the sixth time I have ever seen him get that angry in the seventeen years I have known him.

It's taken me all week to get enough brain-power back to work out what's going on. I keep coming back to what a friend of mine told me a couple of years ago, when we were first nose-diving in to this alternative life. She said "Until you are in this situation, you think that there is some sort of safety net for when this kind of thing happens. And there isn't". This week, I have realised that I had forgotten that. I had started to believe what Social Services were saying about being there to support us and that support is available when families need it.

I realised that the reason that I had got so, so distressed when they said they weren't going to give us any additional help was that they were judging us. They were looking at our situation and saying that we should be able to cope with the support we have in place. They were saying that in their opinion we are failing because we are crap - crap parents, crap people, crap carers. That with the level of support we have, anyone else would be coping.

That is what upset me so much.

And a bit of sleep has provided a bit of perspective, because actually, that's bollocks. We aren't failing because we are crap. We aren't even failing. We are managing an emotionally untenable and physically draining situation in the best way that we can.

A very long time I learned over a period of years that actually, when it comes down to it, you can't rely on anyone but yourself. Other people can give you a hand, but when the shit hits the fan, you can't rely on them to be there for you. This is for a variety of reasons, often good reasons, not just them being flakes. This goes for people and it goes particularly for institutions.

So this week I've decided - the swingeing letter I sent to our social worker and cc'd to our MP not withstanding - that I am done with begging for help from institutions. B and I are in this together and we are going to have to deal with it by ourselves. I'll take the four measly hours a week we're getting through the Direct Payments Scheme and I'll take the hats and footwear and the school transport. But I am done with fighting with people who are judging me for wanting help for my daughter. I am done with justifying myself to them. I am done with trying to explain to people who don't have a fucking clue about our life, that actually, it's a bit crap and we could do with more support than we are getting.

I am going to find someone to come and sleep in one night a week so that at least we get that respite. I have no idea how we're going to pay for it - I'm going to have to sell a metric fuck-tonne of eggs and a couple more chickens a week I guess, or finish my novel or get a paid-for column in a newspaper.

And I'm going to stop wasting my time on people and institutions that don't actually want to help us, just protect their own position - this includes L's current school.

All that time I am not fighting, I will have to spend with the children, with B, on my business and with my friends.

It's a huge relief, having made that choice. Now I just need to stick to it.


Thursday, 9 October 2014

in need of a SHIELD

Dear Person-who-is-not-really-Phil-Coulson. I realise this is weird and slightly stalky and I do promise that I am not going to turn up in your kitchen with a rabbit in a pot. Or at least, not a pet rabbit in a pot. Maybe a skinned, jointed, lightly sautéed rabbit with some shallots and a few carrots and lardons. But definitely not a pet rabbit. Really. I promise.

I have a lot going on in my life at the moment and I have decided that obsessing about the Avengers and SHIELD is as good-a way as any to practice avoidance. Because, you know. Other people's issues are so much easier to deal with than your own. And large, scary monsters and over-large, competently characterised superheroes are about as far away from my own experience as can be at the moment.

I wish that all our issues could be solved with a robotic suit, or an arrow, or a hammer or a widow's bite. I wish that there could be some sort of logical progression of a story, clearly defined roles, an enormous dust-up and a happy ending. I wish that the professionals who I need to rely on to sort things out for me to get on with my job were all as quietly competent and as quick to find solutions as Coulson.

I wish there was a group of superheroes around me that would bail my arse out of the fire when I need it and who would help me get things straight regardless of the odds.

More than anything, I wish that coming mysteriously back from the dead against all the odds was really possible.

You see, my six year old daughter has a non-specific, progressive, neuromuscular condition. We have no diagnosis. She is fed by tube four times a day. She has calipers and a walking frame and an electric wheelchair. She's prone to respiratory infections. She wakes needing turning between three and six times every night. My husband and I haven't had a full night's sleep for months. We've got a lot of good medical professionals giving us support and helping. But when it boils down to it, B and I are on our own in the middle of the night, listening to her breath and wondering if she's going to keep going or stop.

I spend my days trying to juggle all the normal things that need doing as a parent of a young family, managing a small smallholding and dealing with my daughter's professionals. This week we have had an unsuccessful go-round with social services to try to get overnight respite and I have emails and phone calls coming out of my ears. Last month, I spent time trying to get her orthoses sorted so she could walk – she was off her feet for three months because the order was wrong. The month before, I spent trying to get school transport sorted to take her and her electric wheelchair to school and back.

Sometimes, I want out. I want to live in a tower with a multi-millionaire who can throw money and a brain the size of a planet at my issues and have magical screens that pop up and down with a gesture and know I have invincible people at my back to lean against regardless of what monsters are coming out of the walls.

Sometimes this is all too hard and an imaginary world is so much less painful than the real one.

So, Person-who-is-not-really-Phil-Coulson, I owe you thanks for the space you give me inside my own head when I put that DVD on. That possibility that actually, the people behind the superheroes are real. That the dramatis personae bleed through in to real life and somewhere there is a group of people who do actually have each others backs and give each other support and I can pretend – and I promise, I do known it's pretend – that I could have that too.


Wednesday, 17 September 2014

nappies and sleep

We get N's nappies on prescription, every three-ish months. When we are getting to the end of the stash, we ring up and order some more. This has never gone smoothly, mostly because she grows between orders and we therefore need to get a bigger size.

You can't get a bigger size without the nappy nurse telling them to change the order.

About a month ago I told the Compass Team that we would need a bigger size in a few weeks. The Compass Team passed the message along to the nappy nurse. I assumed our order had been changed.

This morning I rang up the order-line number to order some more.

It was dead.

I rang a number I had for the nappy nurse, which turned out to be adult continence, not paediatric. I was given the paediatric number.

I rang the paediatric nappy nurse number.

The paediatric nappy nurse said that she had told the Compass Team that they needed to speak to the school nurses to get a reassessment done.

At that point, one of the Compass Team was actually here in my living room, and she said she'd not been told that when she contacted the nappy nurse.

The paediatric nappy nurse gave me the number for the school nurses, who are in the office next door to her with a one digit difference phone number. Apparently I am not really supposed to phone them myself and it's not her job, the Compass Team should have done it.

She also gave me the number of the new provider of paediatric continence products, because they have swapped over and the letters have not all gone out yet - that was why the phone number was dead. I should have got a letter when we were due to reorder.

She told me that I should ring them and trigger an order of too small nappies so that I had some anyway and the sizing was slightly different on the different brand 'so they may be okay' and then arrange for a school nurse to visit N and check the sizing.

I can check the bloody sizing, it's not rocket science to see that my child has grown and needs a Size Five pull-up for children of fifteen kilos instead of a Size Four for smaller children.

This is stilted and grumpy and just a moan really; everything seems such a struggle at the moment. N was awake six times last night and more than that the night before. If you don't go in and resettle her when she murmurs in her sleep, she wakes up properly crying and it takes more time to get her to go back down. B is so tired that he actually fell asleep in our counselling session yesterday, which is funny only in retrospect. My back is still bad, but not as bad thanks to a Bowen session I had on Monday. The damage to the van turns out to be more than the wing mirror - the driver's side door handle and lock has come off completely although the central locking still works. It is L's birthday tomorrow and he is so excited that he's running wild.

We are going to the hospice for three nights from tomorrow and I am hoping we can catch up on our sleep.


Friday, 12 September 2014

lightness of being

Holding Daddy's hand in case he was
 a bit worried about having the blood taken
We got back from That London at eleven last night, all shattered and with another bust wing mirror that happened whilst we were parked up overnight.

I have nothing good to report, although the people we saw were very competent.

On Wednesday afternoon we spent an hour with the Physiotherapist and then another hour with the Registrar, who took a thorough case history. Then yesterday morning we spent two hours with Professor Mutoni the head of the team, the same registrar and a specialist nurse. They were thorough, competent and approachable; and they were happy with the investigations that have already been done.

Their conclusions are as follows:

1. There is a brain development issue evident from the MRI done two years ago, with a mis-shaped Cerebellar Folia. This could be caused by Mitochondrial DNA depletion and needs re-checking. This can be linked to a Co-enzyme Q10 deficiency and if that is the case there may be some mitigating treatment possible. They are going to check for this in her blood and look at the lymphocytes. This is not as reliable a test as from muscle tissue and they will also look at the remains of the frozen tissue taken in her biopsy.

2. She has a condition that resembles Centronuclear Myopathy, but does not have the condition of that name. They want to look at the rest of the biopsy to check this as well. Although Vici Syndrome itself was ruled out by specific genetic testing, there are a number of 'sister syndromes' that are linked to it. There is a group researching this at Guys and both her DNA and blood from B and me are being sent to them.

3. They want to do a single fibre muscle biopsy if they don't get anywhere with the above tests. He thinks that it may be that the nerves and muscles don't talk to each other and this would be another avenue of exploration, although this is less likely than the above two scenarios. If they find nothing in the next six to eight months then this biopsy would be an option.

A recessive condition is the most likely scenario - just bad luck and bad genes. Apart from the Q10 thing, there is no treatment for any of this and because there are so few people with the conditions known about, there is no body of statistical evidence to draw on for things like life expectancy. With the sister-syndromes to Vici Syndrome, it would depend on how damaged the gene was. However, of the fifty or so children worldwide with *actual* Vici Syndrome, none of them are older than the age of ten.

We decided coming home last night that finding out what's going on may not impact on N. But it will be helpful for L to have any information in case this is something that he can pass on to his children.

I can't find any words to express how I feel about any of this, except that I am on the verge of weeping all the time.

We are bearing it because there is no alternative; but really, this is unbearable, isn't it?



Tuesday, 9 September 2014

great ormond street

Tomorrow we go to Great Ormond Street.

We are going up in the morning, seeing the Junior Doctor and the Physio in the afternoon, staying overnight at the hospital and then seeing the Consultant on Thursday morning before coming home.

We both have very mixed feelings. GOS is the holy grail of children's hospitals; and if there is help to be found anywhere for N, it will be there. However, it is also the end of the road. If they can't help us, no-one can.

The uncertainty of it all comes up and whacks me again and again and again. I don't know how to deal with it except with rigorous compartmentalisation.

My day to day life is all about the laundry and the dishwasher and feeding children and chickens. It is talking to school, talking to the hospice, talking to the hospital. And then there is this, this dark patch in the corner of the room that is always there just out of sight, sliding away when I try and look at it directly. How long have we got? What is going to happen? How's it going to end? When's it going to end? What will we all do afterwards? Where will we live? How will L cope? What will I do?

What will I do?

Day to day, all we can do is put one foot in front of the other and deal with the issues as they come up. Return phone calls, keep appointments, do tube feeds, stretching exercises and nappy changes. But inside both B and myself, a part of us is screaming; and I have no idea how to deal with that, because it's always there and it's not going to to away until it's all over.



Thursday, 21 August 2014

well that was quick

In very fast reply to my last email/post I had an email from the head of the trust saying that someone from the department would phone me. I responded saying (in summary) that words were all very well but they wouldn't solve the issues the department had.

Then the orthotics manager phoned me - from the PALS office, where she had come in on her day off - and told me that they were chasing the Challico boots daily and were going to try to have them here next week. She then told me that the Orthotist had explained to me in the appointment where the boots and calipers were decided on that Piedro were taking up to six weeks to come when I chose them. I replied that this was not the case and that we were shown a page from a catalogue with three colours of boots on it and N chose the hot pink ones. At no point did anyone say there were other kinds available or that there was a ridiculous lead time - in fact, I had asked whether there were others available because my eye had been caught by some purple ones on the following page. She persisted that it had been explained to me. I have sent a further email to her reiterating that it wasn't. We are now waiting to see what happens next week.

I feel harangued. The orthotics manager has clearly been on some sort of training course where she has been told that including people's names frequently in conversation is a good communication tool. She spent a lot of time saying things like 'I feel I have to disagree with you there' and 'that is not what happened' and 'I have to correct you on that point' and asking 'who exactly said that to you?' all in an pretty confrontational fashion. Her technique is to keep talking and talk over you. I told her that anecdotally, we are not the only family who is unhappy with orthotics; and she responded by asking me the names of these people and telling me that I should get them to put a complaint to her so that she can put things right.

In the end I snapped and turned it back on to her, not letting HER get a word in edgeways for a couple of minutes and telling her that at the end of the day, it is the responsibility of her department to sort out N's boots and they have failed to do so.

Things I didn't say included the fact that it's clear her entire department has a culture of arse-covering and are prepared to lie to make sure that trouble slides off them; and that I don't appreciate being effectively told that I am not telling the truth.

I came off the phone with adrenaline shakes of an extreme nature and I am so very, very fed up.



no orthotics at all, in fact


Continuing Orthotics trauma. Luckily N has a spanking new powered chair that she is whizzing about in, that is making up a bit for her inability to stay on her feet for long. But it's a different thing, for a different reason - she needs to be on her feet.

Dear <head of the local NHS Trust>
As a follow-up to my email to you dated 1st August 2014, I continue to be extremely unhappy with the service we are receiving from Orthotics for my daughter.

Up until this week I have been happy to remain outcome focused and to just be grateful that someone in Orthotics was communicating with us. I appreciate that N is a complex case and that there is no 'off the shelf' solution. However, I have now reached the point were I have serious reservations about the Orthotics department as a whole. I feel that we have been repeatedly fobbed off; given unrealistic timescales simply to get us out of the department and off the phone; told on one hand by the Orthotist that there were no free fitting appointment for modified splints and then later told by <the orthotics manager> that this was not the case and that N should have been fitted in - with the blame being laid on the Orthotist rather than the appointment system; and even given clinical advice by the administrative staff over the phone. It appears to me that the department is at best treading water and at worst detrimental to the children who require orthotic support - despite the best efforts of the Orthotists and Physiotherapists who appear to be doing the best job they can within an obstructive and chaotic framework.
My child has now been without ankle support since the middle of the summer term. This means that she has not been able to walk. After our last appointment and subsequent meeting with <the department director>, despite his hope that N's boots and calipers would be available in two to four weeks, we took matters in to our own hands and travelled to Exeter to have some soft boots hand-made for N that give a modicum of ankle support. These cost us close to £100 in total and have meant that we have had to make choices about where that money came from. We are lucky that we have the option to budget for it and to easily travel. N still can't walk long distances with them; but they are better than nothing. 
I chased Orthotics on Monday evening and left a message for <the orthotics manager>, as they had failed to contact me with any information about the boots/calipers arrival. It transpires that both <the orthotics manager> and <the orthotics director> are off this week, however, I received a call back from someone in the department and I spoke to <the orthotics's director>'s PA and to PALS. PALS liaised with <the orthotics manager>, who is apparently picking her emails up from home. <the orthotics manager> spoke to the Piedro account manager, who said that Piedro were now refusing to give a date for the boots.

I am unclear why Orthotics were able to say three weeks ago that they were hoping the boots would be in around 15th August and the lastest they would be in was 1st September if now it transpires that Piedro are not giving delivery dates. It seems unlikely to me that Piedro were giving dates three weeks ago if they are unable to do so now. 
<the orthotics manager> has now arranged a delivery of Challico boots to Peacocks, which are alleged to take ten to fourteen days to come in and then a few hours to be modified by Peacocks to take the calipers. Again, I am confused as to why Challico are now being proposed as a solution, as when initially when the AFO boots and calipers were proposed we were told that Piedro were the only boots that were suitable for modification to take the calipers.
The Orthotics Department at Musgrove Park Hospital is a shambles. We are not the only family that is being let down; but not all the families are as articulate and persistent as we are and I am pretty sure others are slipping through the net. If <the orthotics manager> and <the orthotics director> have been in place for eighteen months as he told us in our meeting with him, I would expect them to have put their stamp on the department by now. If this is the case, then the Trust has the wrong people in post.

I would like to know what the Trust is doing to ensure improvement.



Tuesday, 12 August 2014

flashback

I guess have always used my blog-du-jour to write about stuff that's bothering me. I find that if I write things down, it takes the emotional charge out of whatever it is and it helps me get over myself and move on. So today, I'm writing for me. Not for N, or for people who might read my experiences in the future, or for B, or for anyone else. For me. And I am revisiting something that I have written about in the past that I thought I had done with.

B and I have been having some counselling to help us get a grip on all the stuff that's going on with N. We had a session this afternoon and one of the things that came up was the fact that I find it really difficult to deal with not being listened to.

We were thrashing this out in the context of our relationship with each other and with the kids; and all of a sudden, all I could think about was being date-raped when I was nineteen. Twenty-five years ago.

All I could see in my head was my bedroom at university. My bed was in place against the wall, the cramped sink was in one corner and the desk in the other. I could feel the weight of the chap on top of me. I could hear my voice saying 'I don't think this is a good idea' and him saying 'Don't worry, it won't take long'. And I could feel the physical sensation of him between my legs and the way he moved and the wetness on me and the complete and utter sense of bewilderment that I felt whilst all this was happening, because surely, 'I don't think this is a good idea' is a polite way of saying 'Would you mind awfully taking your penis a little further away from me than it is at present?' and he had completely ignored it.

I couldn't get the images out of my head. They looped again and again for the last twenty minutes of the session this afternoon and then more in car coming home. It's only now, sat on my own sofa in my own house, safe in the present, that I am managing to batten down the thoughts and images.

Sitting here curled on the sofa, with B with his hand on my foot and a hand on my arm, I have cried a few tears and suddenly realised that everything I ever thought I knew is skewed.

For years I have had difficulty trusting people. Particularly men. I dislike being touched by people I don't know very well. I have no patience with lying or with people pretending to be something they are not. I think these are probably fairly standard reactions to being a rape survivor.

On top of that, though, for years, if something or someone hurt me really badly, my mantra would be 'It doesn't matter, it doesn't matter, it really doesn't matter'. I have had really low self esteem and I have self-harmed, scratching or cutting my arms when I felt at my lowest. I had a long period where I found it really difficult to engage emotionally with partners and went out of my way to have brief anonymous encounters.

My rapist was someone I thought I knew well and who I was in love with. Not only did he not stop when I voiced my discomfort, he also told everyone in our social circle at home that we had slept together and that 'it didn't mean anything'. And he also told me that he didn't want me as a girlfriend because I wasn't the sort of person who would fit in with the people he wanted to hang out with at university.

He was a nobber, in retrospect.

But at the time, far from not mattering, it mattered very much. So much that I have carried those coping mechanisms with me for more than two decades.

So now I say, yes, it did matter. It did matter that he didn't listen to me. It did matter that he did something I didn't want. And it did matter to me that he was more concerned with his social standing than he was with my feelings. He hurt me very badly in a number of ways and I don't think I have ever really given myself the space to acknowledge that before. If I have done, it clearly wasn't enough.

So this is me, putting down a marker for myself.


Wednesday, 6 August 2014

need a bigger boat

I'm really miserable about the amount of special kit we have to make room for. It's all useful stuff, but we need a bigger house to fit it all in. Or a wormhole or something:
  • Standing frame (to be strapped in to for an hour or so a day to give her good posture and hamstring stretch)
  • Specialist Davros seat with torso support (to do stuff like cooking or sitting at the dining table)
  • Small chair with torso support (to sit at the little table)
  • Peapod beanbag with torso support (to chill out in when watching TV)
  • Bugzi electric wheelchair
  • Manual buggy/wheelchair
  • Inflatable 'paddling pool' to go around the bed (so she doesn't fall out)
  • Electric hospital bed that goes up and down (to save our backs and take the other kit)
  • Sleep system, to go on the bed and provide support as she sleeps
  • Suction pump (in case she chokes on either food or her own secretions)
  • Kaye Walker walking frame (so she can walk)
  • Toilet frame
  • Electric bath seat (goes up and down and gives her seated support in the bath)
  • Bathroom step
  • General purpose step
  • Ramp out in to the conservatory
  • Three months supply of nappies (delivered quarterly)
  • A gross of Fortini Multifibre feeds, syringes and tubes (delivered monthly)
  • Spare mini button that needs to go everywhere with her in case her button comes out and she has to go to A&E
  • Carrot car seat (to use when she is going somewhere in a non-wheelchair-accessible vehicle)
All these things make our lives easier and we've got enough space, really. But today, there is school-holiday detrius covering the living room, glitter glue ground in to the rug, polystyrene eyeballs all over the room and chaos in the kitchen as B keeps the children occupied (very successfully) for an hour making pizza for lunch. And there is the old mattress on the lawn waiting to go to the tip; and all the old skanky bedding needing bundling up to dispose of ... and so on and so on.

I am really hoping that Make A Wish come through before the end of the school holidays and sort us out a break somewhere.

With babysitting.

Tuesday, 5 August 2014

crazy feet

So, after finally seeing my arse with Orthotics on Thursday, I emailed PALS and Jo Cuddon, the head of the Taunton and Somerset NHS Foundation Trust, and cc'd Orthotics in.

Yesterday we had our appointment and whilst we were in it, I had a phone call from Gervaise Khan-Davis, the Directorate Manager. He met us after our appointment and apologised and told us what they had in place going forward - the lead time on her boots has gone down from six-to-eight weeks to 'hopefully two'. I pointed out that it was only because I was articulate and bolshy that this had happened and I asked what happened to families where parents weren't prepared to make a fuss. He didn't really have an answer, but it was clear that they are aware that the department isn't up to scratch.

I should add, I have no issue with the Orthotists - I can't speak highly enough of the two that we have seen, despite one of them being relatively inexperienced. It's the system.

So, we have night splints.

She doesn't want to wear them at night.

The night-splint-wearing
Cat Princess. Doh.
She and I put them on last night at bedtime - which is a rigmarole in itself because of the criss-cross velcro - and then she insisted on them coming off again before she actually got in to bed. The threat of two hours screaming was enough to make me take them off when she asked.

However, she will wear them in the day and because she can't actually walk at the moment, that's okay - they are aren't robust enough to walk on.

In the interim, I also heard from PALS, the Patient Liaison people. Apparently a 'formal complaint' can take up to twenty eight days to get a response; so instead, I asked them to keep in touch with Orthotics for us regarding the boots.

The whole thing is extremely frustrating and I now know of three different families who are having similar issues on one level or another with the Orthotics Department at Musgrove Park. If you are one of them, I suggest you email the head of the trust, Jo Cubben (Jo.Cubben@tst.nhs.uk) and/or the Directorate Manager of the Musculoskeletal Directorate, Gervaise Khan-Davis (Gervaise.Khan-Davis@tst.nhs.uk) and include PALS (pals@tst.nhs.uk). I also included the Orthotics department (SurgicalOrthoticsEnquiries@tst.nhs.uk) and the Physiotherapy Department (samantha.reid@sompar.nhs.uk) as cc's.

I hate the idea that there are children who aren't getting what they need because their parents are too knackered or overwhelmed to make a fuss. Perhaps if enough of us who are able, do so, there will be a system change.

Thursday, 31 July 2014

best foot forward

AFOs
During the end of May and beginning of June, it became evident that N's splints were hurting her quite badly. Her protruding ankles and the bony prominence at the top of the foot below the ankle were becoming rubbed raw after less and less time in the AFO. N's physios said that she shouldn't walk without the AFOs on because it put extra strain on her foot - her feet turn both in and under quite badly now. She should spend up to an hour each day in her standing frame, to give a good stretch to the legs and feet; and we are doing stretches three times a day for ten minutes at a time.

So, we asked the Orthotics Department for an 'emergency appointment'. The earliest they could book us in was July. I kept ringing, they kept looking in the diary and eventually, we got one on on the last day of the month, which was the day that were booked in to the hospice. We planned to go to the orthotics appointment and then on to Barnstaple.

The regular chap we see at the hospital wasn't there and so we saw a different, less experienced Orthotist. She told us that we shouldn't have been booked in to see her at that clinic, because they run a Paediatric Clinic in the afternoons with one of the Paediatric Physios and we should have gone in to that. I explained that we needed an emergency appointment and had been slotted in. She looked at N's feet and called another Orthotist in to look. They decided they would modify her existing AFOs with some more straps and velcro to pull the foot in to line. They took her splints away and said that they would be back in two weeks and we would be given another appointment to check the new fit.

We went off to the hospice, with N unable to mobilise at all in her walking frame.

It was crap.

We stopped in Barnstaple and bought a pair of boots with the best ankle support we could find, but they didn't really do the job and walking was a huge struggle for her in them.

That was the thirtieth of June.

A few days later, the Orthotist phoned me and said that the earliest appointment we could have to get the splints fitted was in four weeks. I said, could we come in and get them before then because they couldn't be worse than they had been and we could tell when they were rubbing. She said yes.

So a week or two later we got a call that they were ready and went and got them.

They didn't even go on her feet and the shaping for her protruding ankles had been made on the wrong side of the splint.

So we asked for an emergency appointment.

There were no emergency appointments.

Eventually our Physiotherapist sneaked us in to an appointment she had made for another child who had moved away from the area suddenly.

So last week, ten days ago, we went back. This time it was an afternoon appointment and we saw the chap we usually see and the new person. No Paediatric Physiotherapist, though, because she was on leave. The regular Orthotist looked at the splints, said that they were no good and decided that she needed to be in AFO boots and calipers and some soft velcro splints for the night. He said he would rush the kit through and it would be there when we went for our appointment on 4th August. This is the appointment that we *should* have been going to to check the fit of the modified splints.

This morning, Orthotics rang, cancelled that appointment and said that the splints wouldn't be there.

They gave us another date for the 1st September.

I ranted in my head for a bit and then phoned them to find out what was going on. After speaking to the Admin staff and the Orthotics Manager,  I was told that there is a six to eight week wait for the boots to come from the factory in Germany and no chance of them getting here earlier. They have, however (and I was made to feel as if this was a great favour), 'phoned the factory and put pressure on them and the night splints will be available to be collected on Monday'. They even allowed us to keep our appointment with the Orthotist and the Paediatric Physio to have them checked.

In the meantime, I have taken N to Exeter to the shoemaker there to have some boots custom made to try to correct the bend and roll in her feet. They will be ready next week and should help a bit.

And I have done some phoning round and found a company that have a lead-time of three to four weeks for AFO boots of the same make, which come from the actual factory in Spain, not the fictional factory in Germany. Peacocks, who Musgrove Park use as their Orthotist supplies people, do not seem to use the company that I rang; and they are either liars or they are just crap.

I have written a letter of complaint to the Somerset NHS Trust and suggested they try telephoning the company I have found.

I am so, so, so tired of this constant battling, it really is wearing. B is completely head-fucked over all this - for some reason the splints are one of the things that emotionally effect him. We both seem to have different things that press our buttons and this one is his.

For today that is all. I wish there was a Cider Fairy. I'm too tired to drive to the shop.






Monday, 28 July 2014

once more with feeling

I think that you have to be a special kind of person to elect to work with life-limited children.

We've just had a check-in with N's Paediatric Consultant - the one who is the case lead, that co-ordinates all the care that she receives. He checked her over, we talked about the Neuromuscular Clinic appointment at Bristol last month; we told him that we have, this morning, received acknowledgement from Great Ormond Street that they will be sending us out an appointment; and then he had to look me in the eye and say that even if GOS *do* find something, it'll pretty much certainly be untreatable.*

He must do this every single day, several times a day - his speciality is neuromuscular stuff. He's still engaged, kind, informative and really, really good with N.

I knew what he was going to say when we went in there. We both did. It didn't make it any easier though.

I am so grateful to all the people who work with N and with us. They are truly amazing on all sorts of levels and although it's all shit, the fact that they are so good makes it very slightly less so.

We go back again in six months, to do the same thing again.




* unless there's something they can do with Co-Enzyme Q, which is a stonkingly small possibility.


Tuesday, 22 July 2014

tube feeding chaos

Stuff just keeps on happening. It feels relentless. Bristol Royal Children's Hospital phoned just after my last post, saying that they had a short-notice appointment to change N's PEG to a button. She has been on the waiting list since January. The idea of going for a button is that it is much neater and less obvious and doesn't hang out of her tummy like the PEG, so the risk of her kneeling on it as she is crawling around reduces to zero.

A PEG.
The bit bottom left is what goes inside.
From a clinical point of view, the button is changed every three or four months, by either us or a community nurse and is held inside her by a little balloon that is inflated with water via a port outside. The PEG usually lasts for a couple of years but needs a general anaesthetic in order to get it out of her. They have to cut the tube outside the stomach then fish the thing that holds it inside the stomach out via her trachea. For a variety of reasons we chose to change to button - a sense of having more control over it ourselves if it comes out by accident being one of them. The other reason is that we want to feed 'blended diet' - ie, squooshing up what the family is eating in the blender, adding liquid and syringing it down the tube.

Currently, she is having four feeds  of 'milk', a bit like Complan, every day. It is perfectly nutritionally balanced, 1.5KC per ml and is vile, sticky stuff that is hell to get out of clothes and carpet. We have agreement from our dietician to feed BD for two of her 'meals'. The risk is that if we don't whizz it up enough, it might block the tube. Having a button that we can replace without a general anaesthetic is therefore a plus in that situation.

Button, held in place
with a water filled balloon.
So, Wednesday last week, N and B trotted off to Bristol to get it done - it all went well without a hitch and N insisted on going back to school on the Thursday. This was good, in a sense. But it was bad because school hadn't had their training updated in order to be able to use the new kit. So B or I have been going in to school in order to feed her. Previously school were doing two milk feeds, one at mid morning and one early afternoon, in order to keep her energy levels up. We made the judgement call that for these last four days of term we would go in at 12.15 and do one feed. It's worked okay; but I am pleased term has now ended.  School has training in place for early next term and it should all go smoothly from now on.

However. Getting it all sorted is a nightmare. We are under the care of the terminally ill children's team at Musgrove Park Hospital. They are called The Compass Team and are a group of skilled, patient and talented Community Nurses, with additional support staff - counselling support for families, that sort of thing. They weigh N, they are our point of contact for the medical stuff and we rate them highly.

They cannot train us to use N's button, because that has been outsourced.

The training has to be done by the Nutricia Nurse. Nutricia also make the 'milks' that we feed down the tube and we order our milks and our syringes and feeding gubbins from them on a monthly basis. The Nutricia Nurse was unable to arrange to go in to school at short notice for training and so far she has also been unable to come out and show us how to check the fluid levels in the balloon that keeps the button inside N's tummy. We tried to meet yesterday, however, she was unable to book a room at a local GP surgery to hook up with us and SHE CANNOT PRACTISE AT MUSGROVE PARK HOSPITAL, which is where we were, sorting out N's splints, of which more in a separate, equally frustrated post.

It is *insane* that this has been taken away from the competent, involved, local Community Nurses and given to a private company who have staff that cover an area from Gloucester down to Devon and it is *insane* that there is demarcation that prevents them offering feeding support at local hospitals and that technically, the local Community Nurses cannot offer that support to us. I am not implying that the Nutricia Nurses are incompetent - quite the opposite - it's the system. The Nutricia Nurses should be part of the Community Nursing Team, not employed by a private company that is making money out of my child's inability to eat.

Because, in addition, the Nutricia Nurses are not allowed to train people to feed Blended Diet. They are only allowed to train people to use the 'milk' formulae that Nutricia sell.

And school don't want to put blended food down the tube unless they have been specifically trained to do so by a professional - understandable because of their insurance and H&S issues. But the training professional is not allowed to deliver that training, despite the kit N now has being rated to use for Blended Feeding. Because in the US, Blended is the way most families go; because their insurance doesn't cover the £6,400 per year it costs to feed a child the size of N on the milk formula. With older children, it can be twice that amount or more. Here's the link to the Nutricia website where you can see the prices.

The cynic in me thinks that Nutricia has a financial investment in preventing their Nurses training for BD.

I am deeply angry that Nutricia are putting barriers in place that prevent my child eating what we, as a family, want her to eat. Nutricia are controlling N's diet because they refuse to deliver that training. If we want to feed her BD at school, we can go in twice a day to school to feed her. But that's just not practical. The brief period between 8.30AM and 3PM four times a week is all the time that B and I have to sort our lives out; that includes all the admin associated with N's condition, co-ordinating the thirty-plus professionals involved with her care; catch up on our sleep; and, god forbid, earn a living of some sort.

So at the moment, our compromise is that we are going to send in two milk formula feeds for her to school and feed the BD morning and evening. I don't have it in me to fight this battle at the moment - there are other parents out there that are doing this and trying to get NICE involved. I still want to register how ticked off I am at the sheer inefficiency of the system.

I have upcoming posts about Orthotics and Make A Wish. Just putting that in here as a mental note to self.

For today, that is all.

Wednesday, 9 July 2014

transport resolution

We had a week of respite at the hospice last week and this time I think it has actually allowed me to recoup some of my energy. I have been meaning to write this update to the transport battle since before we went away but events got away from me a bit.

A fortnight ago, we finally got some resolution. The Transport Commissioning Manager, the Fleet Co-Ordinator and the SEN Casework Manager came out to our house for a meeting. The solution they proposed was that one of the SCC fleet of minibuses would come and pick N up in the morning and drop her home at night, fitting the run in before they did their other routes. N went off on Monday morning in the bus, with her escort, waving to us all like the Queen. She's absolutely delighted with herself being grown up enough to go on her VERY OWN BUS TO SCHOOL.

I have learned various things from this whole experience.

Firstly, I estimate I have easily put forty hours of my time in to sorting this out. This is time that I could have been using to parent or to work. Or even rest, maybe! If I hadn't been able to carve that time out, we would have been stuffed. We would also have been stuffed if I wasn't articulate, well-educated and bolshy. In my opinion, a way for parents to exchange information about this sort of thing would be really helpful - I have set up a fb group aimed at parents in Somerset for this reason. Linky on the right sidebar at the top.

Secondly, why did I have to raise a formal complaint, get my local councillor and my MP involved? I also threatened SCC with the media. I am not sure which of these, if any, had any effect.

Thirdly, and most importantly in my view - all the other issues fall out of this - why is Somerset County Council's SEN system so inflexible that one person out of commission means the entire system grinds to a halt? It transpired during the meeting that our SEN Caseworker has been dealing with a close family bereavement and has not been in work very much. This explains why they were so difficult to get hold of. It's simply wrong for a public service funded by the tax payer to support vulnerable children and their families to be so fragile. For a senior manager to sit in my living room and say (paraphrasing) 'Yes, it was all a bit of a mess, we couldn't get in to the SEN Caseworker's inbox and when we did there were all these emails!' is simply unacceptable. All along, their communication with me has been pants.

I know budgets are tight and I know that councils are having to tighten their belts all over the place. But I think that a case can be made for Somerset having gone to far. And if they have gone too far in the SEN department, where else have they pared the system back so far that it is simply no longer robust enough to cover staff having time off?

I don't want to live in a society where we don't look after our most vulnerable members. I don't want to be part of a community that has been so divided by biased media reports and government spin that a large number of it's members actually believe that all people on benefits are scroungers. I also don't want to live in a community that doesn't support the unionisation of workers for better pay and conditions - some of the rhetoric on the Bishops Lydeard facebook page in response to a bulletin about the school being closed for strike action tomorrow is mean and spiteful.

I am grateful that this issue is now resolved. But I have no faith at all that I am not going to have to fight similar battles on N's behalf again and again and again over the coming years. My friend N, who blogs at Colour It Green said to me some time ago that 'being the parent of a child with special needs shapes you as a person. This is not necessarily a bad thing'. I don't like the person that I am becoming and I need to find a way to change that.

In other news, my rabbit bite has healed and a long-time blog-friend is coming to visit us for the first time ever, in August. So there are some good things happening.

For today, that is all.


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!