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Sunday, 28 February 2016

{our Disabled Facilities Grant} still ... the saga continues


The lack of momentum with Smiler's bedroom and bathroom is starting to get to me - we seem to be standing still.

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I think we're at the final stage with the paperwork, but I've thought that before, only to get a 'yes, but' type email or phone call about something else that has to be done before we can start.  That dream of moving into our house with Smiler's bedroom with his things in and bathroom of his own complete with the equipment he needs seems to be moving further and further away, even though surely surely it must be getting closer as time passes and the process plods on.

Before Bristol City Council will award the Disabled Facilities Grant, you need to demonstrate that you have the rest of the money in place to complete the work.  With a maximum of £30K from the DFG, we needed to prove we had the rest - the other £26K.  The council Accessible Homes Team referred us to Wessex Resolutions, a "community interest company", who basically look at your income and outgoings and do a slightly less tick box style assessment than traditional high street lenders. This meant that Mr and I found ourselves sat in front of a representative of Wessex, asking to borrow the maximum £20K, surrounded by bank statements and letters and bills, with our fingers crossed.  Although several different councils use Wessex, Bristol has an amount of money set by so that while they don't award the discretionary DFG top up that other councils might, they instead pay the interest on loans from Wessex taken out to pay the shortfall on DFG works.  We were given a decision in principle that day that we'd been approved for the £20K for 15 years at 0%, so emailed the surveyor and attached a photo of a bank statement which showed that we had the rest of the amount covered.  

This is where even more red tape ridiculousness comes into play, along with pointless paper pushing.

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At the very beginning of this, way back in August when I first spoke to the surveyor he told us to get two quotes for the work, he and his manager would look at them, then approve the grant.  We gave two quotes, they told us to get two more because these were so high, and use one of their preferred companies.  Did that, and it was even higher.  Told them we wanted to go with the first (and cheapest) quote, then we're told we need to demonstrate all the money is in place before approval can be granted.  I specifically asked at that point if there were any more steps, whether the file would then have to go on to someone else to be approved, and I was told no, it was just a case of he and his manager agreeing to award the grant.  So we sorted the loan, showed the the rest of the shortfall was covered, and then got a pre-approval DFG letter by email to sign and return.  Did that - literally printed / signed / scanned / emailed back within five minutes, then heard nothing for a week.  Last contact was a short email from the surveyor on the 19th, telling me he had "started the ball rolling to get grant approval".

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Still don't have an approval letter, still - presumably - not yet awarded the DFG,  so still, according to their policy (which I've been asking to see for three weeks) not able to start any of the work.  And in the meantime, still carrying Smiler up the stairs to use the bathroom.  Still lifting him in and out of the front door.  Still carrying him to and from the car.

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Tuesday, 23 February 2016

Petal reviews The Shadow Keeper by Abi Elphinstone

Petal loves to read (watch this space for We Are Reading), and reviewed Abi Elphinstone's first ever book, The Dreamsnatcher, last year.  This week the next novel in the series - The Shadow Keeper - is released, and Petal literally screamed when a copy arrived in the post for her to review.  


Petal got to keep the book in exchange for her review but understands the importance of being honest about her thoughts, and has promised to be truthful.  She told me last time that she likes the idea of other parents and young people choosing - or avoiding - something based on her recommendation, and that she wanted to share her opinion because it might help someone else make up their mind.

As with The Dreamsnatcher, Petal devoured the book in a couple of days and asked me to give her a list of the questions from last time (standard book review type questions from around and about).  She typed up her responses and I've cut and pasted them here, but they're all Petal's own answers in her own words (apart from a minor edit marked with ** to retain a little mystery!).  


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Introduce your book.



This book is called The Shadow Keeper. It's by Abi Elphinstone, and is the sequel to The Dreamsnatcher that I read last year. It's an adventure and friendship story to be read by young people my age (I am 11) or a bit younger.


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Summarize the book without giving away the ending.


Moll is a gypsy, forced out of her home forest by the Shadow Masks. Moll now lives in a secret cove by the sea with some of her camp. She is the most recent Guardian Of The Oracle Bones, just like her parents were before her, which means soon she will have to throw the Oracle Bones and go on a quest to find the next amulet, containing her ma's soul (her pa's was in the amulet she found in The Dreamsnatcher). Luckily her wildcat, Gryff, will be with her every step of the way.


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What did you think of the main character?



I really like Moll because she is so feisty and fierce and funny.

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Which character could you relate to best?



I find Moll the easiest character to understand, because we have loads of things in common with each other, like we both care a lot about a lot of things, like our human friends and the animals we're friends with. This isn't from the book, but I did a test on Abi's website and it said which character from the books you're most like, and I was most like Moll.
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Petal dressed as Moll last year for World Book Day, complete with handmade catapult and fluffy wildcat

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Were there any other especially interesting characters?



Siddy is really interesting - he has an unusual name which I liked because my name is unusual too. He is a bit odd because his dream is for his pet worm, Porridge the 2nd, to win a race. I also like Scrap because she is funny and clever and loyal, which is a really important thing for a friend to be.

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From whose point of view is the story told?



The story is told from the third persons perspective, so when you read it you find out about everything that happens. You get to find out what everyone is thinking as well, so it's as if the third person can read everyone's mind and be everywhere at the same time.


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Were the characters and their problems believable?



The story was written in a believable way, but I don't think that very many people have a real life as exciting as Moll's. But it isn't impossible that there could be gypsies who get forced out of their forest and go and live on a beach. Also, you could be scared that some people are trying to kill you and your cat. I love stories where you get sort of pulled into someone else's world and their life is really exciting and then when you've finished the book your own life and thd real world seems a bit boring compared to the book world.

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How did the main character change during the novel?



Moll grew up a lot in this book, and she realised that you can't always understand why people you care about do things you don't like, but that your friends are really important and you should trust them, even if you don't understand why they are doing what they are doing.

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Did you learn something new from the book?



I learnt that gypsys aren't just in forests and fields, which is what I kind of assumed in the first place.

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Was the book different from what you expected?


No - I expected it to be really good because it was written by Abi, and I loved her first book.  I thought that it would be about finding another amulet because at the end of The Dreamsnatcher Moll still hadn't found the one with her ma's soul in, but I didn't know what her adventure would be like.

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What alternative title would you choose for this book?

The Secret Cove
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Share a quote or two from the book.



"And then Hermit had come along - a crab who terrified of absolutely everything, even his own pincers." and " "I'm going to pack" Siddy frowned "Pack what? All you own is a bunch of catapults."
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Share a favorite scene from the book.



My favourite scene was on the island when they are going to The Blinking Eye and they rest by the Oak tree in the den. I don't want to give away any surprises but when they are there some of the characters heal another character and that part makes me really happy because I like the character that they heal.



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What did you like most about the book?


What I liked most about the book is the sense of constant adventure. There was always something exciting happening, and I like stories where lots happen. I also liked the way Moll carried on being the one in charge, who didn't wait for someone else to come and help her when she was in trouble. Instead she got on and did it herself.

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The original catapult that Petal made last year...

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What did you like least about the book?



The thing that I liked least about the book was **[a character]** dying, because that made me feel really sad for Moll.

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Did you like the way the book ended?



Yes, I thought the ending was really good, because it sort of finished off that part of the story but made sure you knew it wasn't completely finished yet because there's another book still. Except for **[a character]** dying. I didn't want that to happen.

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What do you think will be your lasting impression of this book?



My lasting impression of this book is that it's a really enjoyable read and I definitely need to read the last one in the series when it is published. 

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Would you recommend this book? How would you rate it?


I would recommend it to people who like adventure stories and books about friendships and learning about how to take care of yourself. I would rate it five out of five stars.

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...and this year new and improved version (excuse the poor quality pic - camera tech issues!)

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Is there anything else you'd like to say about the book?

Sometimes when I've finished a book it's just finished and I don't want to read it again but I think I will read this book again and again and again. It's like when you spend time with your friends, and you do the same things so you know what will happen. It's like that, a book that's a friend that you have fun spending time with.

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The Shadow Keeper is available from, as they say, all good bookshops, and Amazon.  If you'd like to find out more about the author, Abi Elphinstone, check out her website or her publishers, Simon and Schuster UK, or say hi on Twitter (@moontrug) - she's friendly and real and would love to hear from you!

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Wednesday, 10 February 2016

Why I love my earphones



Like a lot of people, I've been accustomed to a certain level of background noise while I'm getting on with whatever I happen to be doing.  Whether that meant having the radio on when I'm cooking, a favourite playlist on repeat while I was studying, or the TV on while I did household paperwork, I kind of needed it - it helped me to focus.  

The Brain Cloud changed this completely - any sounds while I was trying to concentrate would throw me completely - I just couldn't follow a train of thought.  I could be halfway through a sentence and Eli would bark, I'd stop talking and Mr would be left in suspense - 'and then what?' - I couldn't remember what I'd just said, never mind what the next sentence was going to be.  I couldn't handle a conversation with two other people - trying to skip between two people talking - often, as conversations tend to, interrupting and talking over one another - I just ended up utterly confused. 

Other times I would be listening to someone, hearing the individual words that they were saying, but not understanding what they meant.  I don't mean I didn't understand what they were getting at, I mean I didn't know the words they were using.   It was as though they were speaking in a foreign language - I could hear them, I just couldn't get their meaning.  As you can imagine - hugely frustrating for someone whose job relied on good communication skills, and picking up on what was going on between the lines.  Irritating for everyone around me too of course - cue several years of eye rolling, deep sighs, and "I've already told you this mummy.  Twice".  

I gave up trying to watch TV as it was too difficult to keep track of what was going on - my memory was atrocious anyway, so I could take the kids to the cinema in the morning then suggest that afternoon that we went to see the same film - they would tell me what happened and it would not ring even the smallest bell in my mind.  The words spoken on screen seemed to stream straight out of my head - they just didn't stick.  I had to concentrate on the actors faces to remember who they were, and it was as if my brain could only deal with one input at a time - if I was focused on what I was seeing, I couldn't hear anything.

Another aspect to the intermittent disconnect between my ears and my brain was the times that info did go through, but seemingly at a hundred times the volume.  As soon as anyone raised their voice or got even a little annoyed, it was as if they were screaming into my face - I was completely overwhelmed.  You know how some people have issues with certain sounds - nails scraping on a blackboard, that kind of thing?  It creates a physical reaction, and often an emotional one too.  If anyone got annoyed, I started to have a panic attack - I couldn't breath, I felt sick, I would shake and turn pale.  And I don't mean if people were having a screaming shouting argument - I mean when Petal would grumble about whose turn it was to brush the dogs teeth.

My hypervigilence caused all kinds of problems, but the over sensitivity to sound meant that I jumped out of my skin at any unexpected noise.  The doorbell going or the phone ringing was like torture, to the extent that my phone was in a drawer for a year, and the doorbell was unplugged because I couldn't control my reaction, having panic attacks daily and the panic attacks were happening every day.  

It wasn't until I was talking to somebody last year about Smiler's Sensory Integration Disorder that I suddenly made the link between my extreme reactions and confusion and the fact that they were all triggered by, or related to, auditory input.  It was as if the clouds had parted - now that I had realised the common factor involved with many of my meltdowns, I could do something about it.

I tried a few different types of ear plugs before I found some that muffled sounds enough to make them managable without cutting them down to a level that I couldn't hear enough to understand what was being said.  Now if I'm going somewhere I know will be noisy but I won't need to pay attention to the sounds - a supermarket for example - I put in earplugs before I go in, and return them to a little case in my pocket when I get to the till.  If I'm having trouble following a group conversation I asked people to slow down, and tell them I have Auditory Processing Disorder (a sense specific type of SID).  Practising techniques I've learnt help lessen the panic responses I have to other people getting angry or annoyed, and putting the subtitles on whenever I watch the TV means I can (mostly) follow what is going on.  When I need to concentrate, I put familiar music on so it blocks out any unexpected sounds.  Usually earphones, usually loud, it means I can cope with being in the same room as other people.  

Right now, for example, Noah and Petal are playing a complex version of Monopoly Deal, with extra rules that they've agreed before they started.  As well as the obvious shouts of joy and annoyance when each of them gains and loses millions, I know 'heated discussions' are likely to break out.  A year ago I would have either left the room, realising I wasn't going to be able to handle it; or stayed put, and ended up upset or panicked or annoyed when the inevitable happened.  Instead, I pulled out my earphones and started a playlist that I know will overlay the sounds they're making, so I won't crumble {Nickelback, by the way. Nice and shouty}.

If I hadn't been able to work out ways of managing, I don't know where I would be right now - very possibly hiding from the world (and the kids) in bed, or maybe somewhere else completely, unable to be around the people that I love.  That's one of the aspects of PTSD that ends up being so isolating - when you can't make sense of what is going on around you, and every instinct you have is telling you to run or fight, when that might well end up making everything so much more difficult.  My earphones mean I can be around people - it's as simple as that.  

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Thursday, 4 February 2016

Disabled Facilities Grant daftness

I hate red tape.

You know, bureaucracy for the sake of it.

We're at the point now where we've applied for the DFG, and it's been approved (yay) and we have a shortfall of just over £25K (boo).  Council procedure is that when there is a shortfall, they refer you to a loan company which lends to people who can't get credit elsewhere.  I don't mean Wonga type loans, I mean an ethical company which looks at your financial information and - if you can demonstrate that you can afford the repayments - lends up to £25K.  With neither of us working right now (me medically retired because of the brain cloud, Mr looking after me and Smiler as well as Petal and Noah) we'd be unlikely to get approved for a loan through any other means.  IF we get this, we still need to find about five grand, and we're hoping that small amounts from a few charities, together with what we have put by, will mean we're sorted.

The problem?

The charities can't make an award unless a DFG has been approved. Fair enough.  So I asked for a letter from the councils Accessible Homes team to send to the charities.  But they can't give me that until ALL the funding is secured - the whole of the £25K shortfall.  So I need to secure all the funding before I can get a letter that states they are awarding the DFG.  If I could secure all the funding, I wouldn't need to be applying to charities.  

Did you ever see a film called The Secret of My Success, with Helen Slater and Michael J Fox?  He's trying to find work and ends up asking an employer (who has just turned him down because "we need someone with experience") how he is supposed to get experience when he can't get a job to get any experience until he has experience (fab film by the way, so long as you can get past the eighties hair and shoulder pads and casual sexism).  

That.

I hate red tape.

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