11/52 2018

Week 11
12 - 18 March



This weekend we had a very special outing - we were invited to visit a local recycling firm so that Jamie could admire some bin lorries up close.



Conditions weren't ideal - Jamie is on day 2 of a sniffle, and it was snowing - but from his safe vantage point on his daddy's shoulders he got to have a good look and he definitely did enjoy himself. He didn't quite feel confident enough to sit up in the driver's cab though!



Big thank you to Fortress Recycling.

08/52 2018

Week 8
19 - 25 February



Jamie isn't quite as interested in going out in the yard as he was last year. I don't know why - it could be the weather, it could be that he has more interesting indoor toys now, it could just be that he now has the capacity to give a clear verbal refusal and tell me what he would prefer to do. But this week, we went out in the yard, and we tidied the plant pots, and we did experimenting with the ice on top of the bucket, and we pulled out the Little Tikes car.

For me, seeing him out here again really underlined how much he has grown and how much more mobile he is.

06/52 2018

Week 6
05 - 11 February



I wasn't actually present when this picture was taken. Steve took Jamie for a Daddy Outing to Foundry Wood, which is one of those rare places where I really wish I could go (it's a lovely outdoors natural environment community project with an interesting activities program), physically cannot go (there's only one entrance and that is a steep dirt track way beyond the capabilities of either wheelchair), and yet I can make my peace with the inaccessibility (natural environment, etc) as long as someone ensures that Jamie isn't missing out.

Also, not to put too fine a point on it, while I'm trying to soak up and enjoy all of Jamie's childhood it is also good for me to have a couple of hours OFF every now and again.

Anyway, Jamie and Daddy both loved it. They came home and showed me dozens of pictures of an absolutely idyllic time discovering all manner of interesting things. Choosing just one was difficult but I do love Jamie's happy little face in this one.

04/52 2018

Week 4
22 - 28 January



Another cold, wet playground. But. This is not the toddler frame. He is way up high, and managed to get up there by himself. I was impressed.

03/52 2018

Week 3
15 - 21 January



Another cold, wet, yet cheerful morning at a park. Steve took this photo; I'm the blue and grey blur in the background. Jamie was running back and forth between the two of us laughing his head off.

01/52 2018

After a lot of dithering I decided to do the 52 project again. Yes, it's February already, and a late start. Yes, my timekeeping was terrible last year. From a social media guru perspective I might as well not bother. But from a parent perspective, I really enjoy having a collection that is just one photo a week to enable me to watch him grow without a disproportionate focus on big events where dozens of pictures were taken.

If I ever *really* get my act together I might try and have each year printed up into an actual physical photo book to keep, but my imagination is tempered by low self esteem.

Week 1
01 - 07 January

As you can tell from the rain, the hood, and the colour of Jamie's nose, this was a cold wet morning at the playground. We needed it, though, and he wasn't the only one smiling.

50/52 2017

Week 50
11 - 17 December

The first day of proper snow, Jamie hated it, largely because it was still falling and getting in his face. On the second day, he was adamant that he Did Not Want to go out.

So, my PA offered a Plan. She would go outside and play right in front of the window and attract his attention. I would wait for him to get interested and then wrestle the snowsuit onto him. Then she would open the door and he'd be able to simultaneously break free from me and get a better look at what she was doing and wouldn't realise he'd gone out in the snow until he was out in the snow.



It worked like a charm and he had a great time.

Bonus video footage:

49/52 2017

Week 49
04 - 10 December



Back in the window for this week's picture. The day this photo was taken was the first time Jamie had seen snow, for all it was at the "light dusting of icing sugar" level. He's beginning to draw connections with various books but he's quite fascinated by the way his familiar window views have changed over the last couple of months.

I got him the festive window gels. We don't have much of a tree going on this year - no space to put it! - but we've got decorations on the walls and shelves, and when I saw these window accessories I knew he'd love them. He doesn't like to touch them with his own fingers but he carefully shows me where to place each one, and if one comes off he wants it right back where it was. For £2.50/pack they're surviving much better than I expected.

48/52 2017

Week 48
27 November - 03 December

Steve had to get up silly-early for work this week, and while Jamie usually stays asleep, on this day he woke up, and it's hard to persuade a two year old that it's still night time and he should go back to sleep when he's had nearly a full night's sleep and can hear morning-type sounds.

As a result, the nap that usually happens in the afternoon, happened in the morning, and by 2pm Jamie was fully rested, fully fed, and ready for whatever the world had to offer on this muddled-up day.



What it offered was this: the really good park in Stratford, practically empty and glowing with a winter sunset. We stayed until dark (about 4pm, sniff) and even then he didn't want to leave.

Yes, he did end up having a second mini-nap.

03/52 2017

We don't have much of a garden to speak of, but there's a paved back yard which is a good place for a toddle and some fresh air when we can't get to the park.

I've long had a few plant pots out there, although I must confess that last year they were appallingly neglected due to baby - if the baby is awake, you're too busy to go and water the plants, if the baby is asleep then there's no way you're going to risk waking them by opening doors and wandering in and out!

This year, though, it looks like Jamie will be old enough to participate in tending the plants. I'm not getting overly invested in it, not least because of a story my mother has often shared about how I, as a toddler, pulled the heads off every single daffodil along the length of our garden path. But we might be looking into getting him his own watering can and maybe figuring a way of having a bit of earth that he can dig and poke about in. Recommendations welcome!

46/52

Much as I love the green and blue jacket Jamie has been wearing for the last couple of months, the clocks have changed, the days are shortening, and now there's every possibility of us being outside at dusk or even when it is properly dark.

Combine that with Jamie's growth, and his ever-increasing mobility, and it was time for him to get more visible.



So, one dazzlingly bright orange jacket in size 12-18 months. What surprised me is how much more relaxed I feel even in the middle of the day, having him this visible.

I am still trying to work out the correct combinations of outerwear: the full body waterproof (but not warm/lined) splash suit, the full body warm (but not waterproof) snowsuit with button-on mittens and soft bootees, or the wellies, or the properly fitting how expensive?!?!? shoes, and when is it time to put tights/leggings under the thick fleecy trousers if he's not wearing the snowsuit and... at this rate I'll need a team of Sherpas to carry Jamie's wardrobe options to go places.

Eden Project - Time of Gifts

(picture heavy)

Steve recently finished what I shall tactfully describe as a "gruelling" work contract (and yes, that is putting it mildly) which took a toll on both of us, and we decided that we were owed a little break before getting into the fun of preparing for Christmas and trying to figure out where our life goes next.

Given a free choice of anywhere to go, nine times out of ten I will pick the Eden Project (the tenth time I will beg to stay in bed and be brought cups of tea). In the last year we've been to Cornwall three times, and on each occasion we've visited the Project for two or three days, and I still always feel sad to leave.

Last time we went was in May, when it looked like this:


In November, even inside the Biomes, it's more like this:


I still get a great sense of peacefulness and well-being from the Project. And the access. Oh, the access. No being sent round the back, no staff tutting at you if you can't keep up, no "special" holding pens areas, no leaving you sitting by the bins while they try to find out if anyone knows where the keys for the service lift have got to. Universal design, access is front doors and main paths all the way. The slopes can be a bit of a workout and there is a certain amount of mileage involved in getting around the place, but they have scooters and powerchairs which can be booked in advance. November being the off-season, they weren't all booked out, so at the gate I was politely offered the option of using one of their powerchairs "if it would be easier." More importantly, my choice of sticking with my own chair was accepted without fuss.

As he tends to, Steve took hundreds of photographs of all sorts of beautiful plants, flowers, sculptures and suchlike, and I'm sure soon he'll load them up to his Flickr stream which will be much better than me trying to describe. But he's let me pop a few onto my own Flickr stream so that I can blog this.

The second day of our stay, the Friday, was the beginning of the winter celebrations at Eden, which they call the "Time of Gifts". There is, of course, a Father Christmas with a cohort of elves and a stable full of actual reindeer, much of which is centred around the Sami people of Northern Europe. I was more interested in the goings-on within the Mediterranean Biome, though - storytelling, music and craft activities particularly. There are definitely worse things to do on a Friday afternoon than to sit and make Christmas decorations and chat with a bunch of friendly strangers, listening to live music and surrounded by the gorgeous smells of Mediterranean plants. As it got darker, Steve returned from his photography spree and brought me a hot chocolate to warm me up while we listened to the evening story and music.



Then it was time to leave the Biome and get ready for the lantern parade. There were large sculpture lanterns being carried mostly by staff and volunteers, but anyone who wanted could join in the parade with a pyramid-shaped lantern on a stick, with a candle inside it. Anywhere else, I'd have assumed I couldn't participate. At Eden, no one batted an eyelid. So here I am, in front of the big Christmas tree outside the Core, carrying a lantern wedged between my legs and my wheelchair, waiting for the parade to start:

And modelling my own handknit hat by the light of my lantern:


The procession began with large sculpture-lanterns coming down the ZigZag path towards the Core building, where we were waiting. It was an impressive sight, although with a slightly hairy moment as a nearby child forgot to pay attention to his own lantern (my reaction of "excuse me! please don't set fire to me!" made me realise just how incurably English I can be). As the sculpture-lanterns and their accompanying drummers came past, we were filtered into the procession. It was quite a strange experience to be actively participating in something like this, being one of lots of little bits. There was a very carnival atmosphere.


The procession wound around the gardens outside the Biomes, lit by flame torches with occasional groups of non-participating onlookers. It ended by a gazebo of fairy-lights, where the Eden Choir were waiting to perform. Since the wheelchair makes me an honorary short person, I was ushered to the front with the kids so we could see.



Listening to the Eden Choir was lovely, and some of the drummers joined in ad lib. Then there was a short and unexpected burst of fireworks which sent Steve whirling around to try and catch a shot:


Finally, this lovely piece of fire art, lit while the choir sang, reminded me very much of the Paralympic closing ceremony which meant that in a strange way it reminded me of summer again.

Keeping Warm

I just got my blog stats and found that a lot of people have been turning up here looking for information about help with heating bills.

So, I thought I'd do a recap with information and useful links double-checked for 2010.

There are two types of help with winter heating. One is the Winter Fuel Allowance, the other is the Cold Weather Payment.

The Winter Fuel Allowance is a one-off tax free payment of between £250 and £400 per household. It is paid to everybody over the age of 60 who is normally resident in the UK. It is not means-tested and payment is automatic (Peter Stringfellow got some cheap headlines by offering to give his back). Recipients don't even have to be living in the UK during the winter - it will still be paid automatically even if the recipient is a millionaire who decides to go on an extended holiday in warmer climes for the next few months.

Winter Fuel Allowance is NOT paid to anybody under the age of 60 in any circumstances.

The Cold Weather Payment is a bit more complicated. It is a payment of £25 paid out to eligible people if there is a "period of very cold weather", which is defined as when the local temperature is recorded as below 0 degrees Celsius for seven consecutive days.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment will be made. People do not need extra heating in this circumstance as this is not considered by the government to be a period of very cold weather.

You can find out whether the government thinks your local weather has been Very Cold by using this handy DirectGov tool. Just type in your postcode and then click on the orange "Submit" button that is down and to the right.

My postcode is deemed to have had one period of Very Cold Weather during November. However I'm not eligible for any payment. You see, eligibility is rather more complicated as well.

The over-60s on pension credit get it, on top of their Winter Fuel Allowance. From there on in, it's breadline only. People on Income Support or Income-based Jobseeker's Allowance may be eligible if they also have a disability or pension premium, a disabled child, or a child under five years old. It is also available to most disabled people on Income-based Employment Support Allowance.

It is NOT paid to people on contributions-based benefits, nor is it paid to people on benefits like Disability Living Allowance or Working Tax Credits of any kind, unless they are also on those named income-based benefits and they meet the additional conditions described above.

Both types of payment are automatic - if you are eligible for it, it will be paid. The unfortunate news is that unless you're over 60, you're probably not eligible for anything.

Getting on with 2010

Life has been (mostly) nicely full since my last post.

The biggest nice thing was that Steve and I went on a little weekend jaunt to the top left north-west corner of Wales. There wasn't a special reason beyond "getting out" and in many ways I think that made it even more enjoyable. We were supposed to have another friend with us, but unfortunately he had to drop out at the last minute... in retrospect that's probably a good thing because I don't think Steve's car was built to hold more than two adults for long journeys.

So we spent Saturday trundling as far as Bangor, where we stopped overnight at a Travelodge, and then on Sunday we picked up a load of leaflets from the foyer to see if there were any particularly appealing attractions. Which there were, but for some unfathomable reason most of them aren't open until Easter. Tsk. So we decided to take our trek to the top left north west corner to extremes, and headed over the bridges to Anglesey, and thence to Holy Island.

On the way we stopped in at Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and got a couple of postcards, because we couldn't not. The sun was shining and it was a beautiful day, so we then continued on to the bird sanctuary at South Stack. There was wheelie access right up to the clifftop (and probably right off the clifftop if you weren't careful) and it was lovely to be able to sit there watching the sun, sea, waves, lighthouse, birds, boats, and also looking out for our own noses falling off with frostbite because it was COLD! Still, that's only to be expected for January.

Steve tucked me back into the car to defrost while he ran about taking more photos. I got out my phone to amuse myself and was a little disturbed to find a text message from my mobile phone provider welcoming me to Ireland and advising me of the Euro Roaming Charges. I don't know whether to be peeved at the lack of local signal, or be impressed that my phone was getting a signal from over 60 miles away.

The rest of my enjoyment of the beautiful scenery was from inside the car, but it most definitely was beautiful. We found time to stop at Trefriw Woollen Mills which was nice in a "yay! found yarny!" way, but again, most of the features apart from the shop were closed up for the winter.

Poor Steve obviously had sole responsibility for the driving which meant that he was as shattered as I was by the time we got home. A substantial part of last week was spent with me taking it as easy as possible during the day, to make sure that when he crawled in after work in the evening I wouldn't have to ask him to do as much.

Then on Friday, just as we were picking up again, we both came down with the latest illness sweeping around his office! It was a really nasty one with fevers and yuck - one of those ones where you decide you can't cook, order a takeaway, and then it arrives and you just look at it, knowing that you should eat, but unable to bring yourself to actually do it. Happily it was just a two-or-three-days one and we're both feeling a lot better now.

The business stuff is all but ready to go now, thanks to the help of the Prince's Trust. There's still a few chains to be completed, silly things like: I want to pay for my insurance, domain name, etc, from the business account; I'd rather not start charging things to that account until I'm certain that the capital I paid in has cleared; I won't know if it's cleared until I've had a look in the online banking; I can't look at the online banking until I have all my login details. But the bits and bobs are in place. Mainly I just have to man (woman?) the heck up and take the plunge of registering.

Winter Heating

As some of you may have noticed, it's been rather chilly in the UK lately. At the risk of stating the obvious, this has an impact on people who can't keep themselves warm properly. There are all sorts of reasons why a person might have trouble keeping warm, but the main ones are connected to age or illness. For instance, there are conditions and medications that play havoc with your 'internal thermostat', there's the issue of poor circulation, there's the issue of being unable to move about enough to adequately boost your circulation, and of course there's the issue of poverty, which disproportionately affects elderly and disabled people.

Never fear, the BBC reassured us:

... the government said it would be making cold winter payments because temperatures had been low enough for vulnerable people to qualify... ...Minister Helen Goodman said: "The payments are automatic so everyone entitled will get them and should not worry about turning up their heating."

But who is entitled?

Well, there's two different payments. The first is the Winter Fuel Allowance. This is for all UK residents over the age of 60 and is made every winter. It is automatically paid for anyone on a state pension or pension credit, other people who are old enough can apply for it separately regardless of wealth. The payment is between £125 and £400 per person depending on your exact age and how many people are in your household, and has an effective minimum of £250 per household.

The second is the Cold Weather Payment. This is more complicated. More people can get it. There's the pensioners (again, and on top of the Winter Fuel Allowance already recieved). Then there's people on Income Support, Jobseekers' Allowance or ESA who also have a child under five, or a pension or disability premium added to their basic eligibility.

However instead of being paid every winter, it is only paid when there has been a "period of extreme cold weather", defined as seven consecutive days on which the average daily temperature at your postcode's weather station was zero or below. If this happens, a payment of £25 is added to your benefit for each seven-day period.

If there are six days where the temperature is below freezing, and then one day where it creeps up to one or two degrees above, and then another six days of freezing - no payment. You do not need extra heating in this circumstance.

If your child over five is sent home from school, and you have to heat the house during the day for their sake - no payment. You do not need extra heating in this circumstance.

If you are disabled in a way that affects your body's ability to keep warm, but instead of being at home and claiming benefit, you are working from home (either permanently, or because you cannot get into your workplace in the snow) - no payment. You do not need extra heating in this circumstance.

Today Helen Goodman, the Minister for Work and Pensions, was supposed to answer questions in a No 10 webchat. This was keenly followed over on Ouch! and Twitter and unsurprisingly we were all left disappointed. Polite, well-typed and specific policy questions like "What is the specific reason for Winter Fuel Payments not being available to the most vulnerable disabled people as well as pensioners, please?" were ignored in favour of the type of questions that are already very easily answered with a quick search of DirectGov, the type of questions that allowed the Minister to promote the Warm Front Scheme, or questions about individual circumstances such as this gem:

melita:
hi this Cold Weather Payment is it for everyone as on the directgov web page its as if u have kids under 5 in witch i have 2 kids under 5 so would that mean i get the Cold Weather Payment x

Helen replies:
Melita,
If you are on Income Support and you have a child under 5 years old, you will get a Cold Weather Payment. The same applies if you are on income based Jobseekers Allowance, with a child under 5.

Quite how people like "melita" have the capacity to find out about, submit questions to, and watch a government webcast, yet were unable to contact their local Jobcentres to check their specific eligibility, is beyond me.

Disabled people were told that they already get Disability Living Allowance (DLA) to pay for increased heating costs. It's quite astounding the amount of shortfall that DLA is meant to cover. As Lisy put it:

We're only granted DLA for "care" and "mobility". There's no "heating component" of DLA or an "any other costs" component of DLA. Please explain how we're supposed to pay for heating if all our Mobility component is taken by Motability and all our care component is taken by Social Services?

Another question there that, unsurprisingly, the Minister chose to not answer.

Prepared

I knew there was a reason I'd put so much time and effort into getting ready for Christmas well ahead of time... we went to a big family meal with a handful of children small portable germ warfare agents present, and now Steve and I are both suffering from Winter Lurgy. Yesterday in particular was hideous, with a mother of a migraine that actually made me throw up (usually they only make me feel nauseous).

Thankfully, having everything sorted out already, along with me not being "at work", has meant that I've been able to properly rest up every day so I'm nothing like as floored as I would be if I was still thrashing myself to pack CDs. Since I'm not that wiped out, I'm able to tackle a bit more of the household stuff than I otherwise would, which in turn gives Steve half a chance to recover when he staggers in from work.

It does mean I've had to put the business development stuff on hold. Again. Yup, the hopes and dreams I had for that referral to the Council for Disabled People being the business development support I needed were unfounded. It turns out that this particular project is set up to help "voluntary and community organisations supporting disabled people" rather than helping disabled people set up businesses that intend to serve anyone, disabled or otherwise. It was a completely inappropriate referral and all we can guess is that the person who referred me was just panicking and opting for the first project with "disability" in the title.

So I'm pretty much figuring it out on my own now, with some helpful printouts from Business Link and any number of PDFs on the HMRC website. Most of the basics are in place - including, today, the good news that my PO Box will be up and running at the beginning of the year - but I have kind of lost momentum. I think I may be best off calling it a proper Christmas/New Year holiday and picking it up again after my birthday.

Also in the New Year, I'll be interviewing for a new PA, as the lady who has been working with me this year has gone on Maternity Leave. I'm quite hopeful, and a lot more confident now that this is the second time going through the recruitment process.

Despite the various setbacks, I'm still feeling really positive about things, and as usual I'm very much looking forward to Christmas. So let's round off with my really awful snapshot of my really lovely Tree.

(edit to add title!)

I am that good

Feeling rather pleased with myself at the moment.

I've more or less stopped flustering and panicking about self-employment (remember that five weeks ago the concept hadn't crossed my mind) and I'm making good, steady progress towards being set up and ready to go. I've completed about half of the online business course, and about two-thirds of my business plan. I've taken care of a number of practical issues (things like the VOA assessment for whether I'd have to pay business rates) and I have some sensible questions to ask the advisor I'm meeting with this week. I've picked a name, set up an email address, installed a suite of office software, done some market research, got some quotes for logo-type artwork... the list goes on*.

On top of this, I'm also ready for Christmas. Steve's having a bit of a trying time at work right now and tends to come home with his brain dribbling out of his ears, so I took charge. Step one, I made a list of people we should buy presents for and a list of people we should send cards to. Once he'd approved these, step two, I wrote out all the cards for him to add his signature. Step three, we determined who we were likely to see during December and dug up addresses for the others, and I sorted out the envelopes all nice and ready for the postbox. Step four was a list of suggested gifts from online retailers for almost everyone on the present list, approved and purchased.

Step five was an actual shopping-centre trip to dig up gifts for those we hadn't found anything for online. Step six, I've been wrapping and labelling the gifts as they have come into the house. We are now at a point where the completed boxes of wrapped presents have been dispatched to the people we're not going to be seeing this year, and there are a couple of plastic boxes of wrapped presents and a stack of cards ready for the people we are planning to see.

We are, in fact, all set for Christmas, which is pretty good considering that we're still in the first week of December. Steve isn't sure whether to be amazed or disturbed, but is presenting it as concrete proof of my abilities to anyone who asks him what it is I'm planning to do and whether I'm any good at it.

*by the way, one of the items remaining on the To Do list is finding someone to hold my hand through the website process. Any takers?

Keeping warm

So, I'm at home all day now, more or less every day. The thing I currently miss most about work is that it was warm. The weather has turned quite chilly - as one might reasonably expect, what with it being nearly December - and so it's a good time for those of us who maybe can't quite move around enough to keep ourselves warm to remind ourselves of the current advice in the form of the Keep Warm Keep Well campaign.

Okay, so as usual there's ample opportunity to snigger at the naivety of those who wrote it, for example the way they think that despite the level of poverty with which many elderly and disabled people live, we'll all have central heating with a thermostat that works. It's also very easy to get angry about the failings of the Warm Front grants.

Nevertheless there's a lot of good tips and advice in there but some of it does seem a bit... mutually exclusive. For instance:

"Fit draught-proofing to seal any gaps around windows and doors."
"Remember to close curtains and shut doors to keep heat in the rooms you use most."
does seem to clash a bit with:
"If you use a fire or heater in your bedroom at night, always keep a window and door open."
"Keep your home well ventilated."

Am I meant to be sealing myself in, or trying to get a breeze coming through? I'm just not sure any more.

On balance I've opted for sealing myself in - it's warmer that way, and there are worse ways to go than carbon monoxide poisoning*, where from what I understand you feel drunk and then you fall asleep, which is a reasonable summary of my day to day life anyway.

It's a good tip about keeping the blinds or curtains closed, and it makes a noticeable difference. However when you're stuck alone in the house all day, even if you don't have depression or SAD, it's all too easy for your mood to plummet, so I'm making a point of spending at least a couple of hours sitting by the window with the blinds open trying to enjoy what natural light there is.

It's also a good tip about having plenty of hot drinks, although again, not without drawbacks. I know I'm not the only disabled person who, when having a painful day, doesn't drink as much as she should, in order to minimise the number of excruciating climbs up and down Mount Staircase just to pay a visit.

So I've formulated my own advice. Ready?

If you can, spend as much time as possible out of the house and in a place where someone else pays the heating bill.

This slightly contradicts the official advice about not going out unless absolutely necessary, depending on whether you read it as "don't leave the house" or merely "don't spend time hanging around outdoors". And of course for many of us it's impossible - or at the very least, the cost of taxis would outweigh the cost of properly heating our homes. But if it's in any way an option, my inexpert advice would be to do it. Spend an afternoon in the library, sitting by a window on the sunnier side of the building. Go to a shopping mall and sit under the skylight watching the world go by. If possible, find some volunteer work, then there's free tea and coffee too. Join in with a free course at the Community Centre even if it's a topic that doesn't raise your interest. See people, get sunlight, get your money's worth from your council tax, because there are few more frustrating ways of spending a day than cooped up indoors with the curtains closed, shivering.

* I am a very fortunate disabled person who lives in a centrally heated house with reasonably-sized rooms. I am not sealing myself into a tiny bedsit flat with a gas fire, so please do not worry - or at least, not about me...