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.