Keris Stainton's Blog, page 78

Harry on the Royal Wedding

Thanks to his crush on Kate Middleton, Harry insisted on watching the wedding. He actually lost interest about an hour before anything actually happened and – thanks to his rudeness – we ended up having a shouting match during which he yelled: "All these years you been a beautiful lady and NOW look what you done!" I laughed, he laughed, peace was restored and he sat next to me to watch Kate arrive at the Abbey.

On seeing the bridesmaids: "KIDS are getting married?! I wish I was there. I'd just eat pizza as I was walking."

On the choir: "I didn't know there were angels in the church!"

On Kate walking down the aisle with her father: "I didn't know she was marrying that man. I thought she was marrying William!"

When I explained that her father 'gives her away': "I don't get it."

On the ring: "The ring's saying, 'Hey! I don't want to be on someone's finger! Get me out of here!'"

And… finally: "I heard there was a person say 'you may kiss the bride'. We should pretend to do that."

Harry's Wordle

In the interest of fairness, here's Harry's Wordle.

This was made up from a combination of Harry's own tweets and my 'stuff Harry's said' tweets. Click to embiggen.

(And in case you're new to this blog: Middy is me )

Joedle

Walking home on Monday, Harry asked how many words Joe knows and we started listing them. Turns out he knows loads more than we'd realised, so I decided to make a note of everything he said and make a Wordle out of it. I originally planned to do it for a week, but it turned out a day was plenty. Blimey, he never stops!

This photo was taken yesterday on the way to pick Harry up from school, so this blog post is a snapshot of Joe Arthur Stainton, aged 2 years, 3 months and 1 week.

(And, no, he's not speaking in sentences yet – though he does sing the Something Special theme tune – but Harry didn't talk AT ALL until he was three, so we're happy.)

UPDATED: Emma's story: what may happen if Disability Living Allowance is cut

27 April 2011: Read an update following the publication of the government's response to the consultation on Typecast 

This is a bit of a departure from the kind of thing I usually blog about, but I read this post on Nickie's blog Typecast (it was posted on 15 March 2011), and asked Nickie and Emma if I could repost it here. It's long, but it's incredibly important. Please read it.

We are scared. We are utterly terrified.

We have three children with 'multiple, complex additional needs' to quote the headteacher at school. Broadly speaking these encompass Autism, ADHD, Hypermobility and visual and hearing impairments. Once you've factored in that only one of those three is in full time education (we have one we are trying to get into full time but it's not working out) and the ensuing multiple daily school runs, along with at least five different kinds of medical appointments per child on a regular basis it is completely impossible to find work that will accommodate the demands of our childrens' care needs.

At the moment we are able to survive financially owing to us being in receipt of Carers Allowance.  This means that we get additional assistance with the costs of living which really do make a difference. However our receipt of Carers Allowance is reliant upon our children being in receipt of Disability Living Allowance, which the Coalition now wish to change to a new system called Personal Independence Payments.

The aim under the new system is to cut expenditure by around 20%. This is due to George Osborne's assertion that "three times as many people claim it [DLA] today than when it was introduced eighteen years ago", a claim countered and dispelled on the Ouch! message boards. DLA is actually under claimed by around 40% and has a fraud rate of approximately 0.5%, far from ideal but very much lower than other benefits, mainly due to the sheer amount of evidence you need to provide from health professionals and others to back your claim.

They propose to reduce the paperwork and evidence by introducing an assessment by ATOS. However ATOS assessments have already been shown to be extremely flawed and not accommodating of individuals with impairments such as Autism. There is very little confidence in ATOS given how they are currently faring with their contract to perform medicals for Employment & Support Allowance; see here.

I believe that whilst the current DLA system requires an overhaul the evidence required from specialist professionals is actually more credible than a single 20 minute appointment with an assessor who has never met the claimant before and possibly has zero experience with the claimant's actual disability. The ATOS system of assessment appears to purely be a cutting claimants exercise.

Initially the changeover to PIP is for adults, but my response to that is that firstly our Autistic children will grow to be Autistic adults. Secondly they are considering implementing it for children at a later date, and then taking into account aids and adaptations when making payment, so if they have a wheelchair (like our son) then you lose a bit of money, if they have additional support at school they lose a little more money, and so on and so on until it has all been whittled away. The threat is very real.

If our children lose their DLA then we lose our protected status, and are therefore going to be expected to find paid employment. There is no way we could get affordable childcare (special needs childcare when it's even available – which it often isn't – is routinely at least double that of other children because a child with additional needs is deemed to take two places). Even if we could, is that childminder going to to and fro from the school for the medical appointments? Are they going to cope with being spat at, kicked, hit? Our childrens' needs will not have gone away, we will have no other way to support them and no money coming in, potentially no roof over our heads…. what then?

Plus, right now, where is the work? Particularly for someone who has largely been out of the workplace for seven years due to caring needs…..

As well as facing the potential removal of our entire family income, we are having to contend with the real consequences of the cuts towards mainly education and health for our children.

The government's lift on ringfencing monies for the disabled was supposed to be so that local authorites could then provide a 'joined up service'. Far from it. Because the monies are no longer ringfenced our daughter has had all early years support removed. Her preschool used to have access to the FIRST team for help and advice on how to include her and accommodate her needs, and she used to have Portage at home to develop skills which are lacking as a result of her developmental delay. These services have either gone or are going within the next term. Our sons were receiving support from the Aiming High for Disabled Children scheme, this took the form of a charity called Spurgeons who provided our sons with 'buddies' to befriend them and take them out for a few hours at a time, to teach them social skills and to give us some much needed respite (which has not been provided to us by our local social services despite at least four referrals from several health and education professionals). Spurgeons has had their funding from the local authority cut completely and therefore the scheme will be ending in June unless a private benefactor can rescue them.

As far as healthcare is concerned, our daughter has a cardiac conditon known as a patent ductus arteriosus. She will eventually need surgery to correct this, but at the moment is under annual review and has an echocardiogram to assess how she is doing. This echocardiogram was due to be performed in November last year. When we'd not heard by December I started to chase. Over the months of December, January and February I chased the GP, paediatric consultant and cardiac consultant's secretaries only discovering last week that there are no cardiac clinics in Brighton for the forseeable future. We managed to get our little girl on the London list to see the Cardiologist at the Evelina and are hoping this will happen soon. However it will still be a minimum of five months late before she is seen and very squeaky wheel tactics had to be deployed to secure this.

Our little girl also has potential visual problems and was booked into an orthoptic clinic in May to see a consultant to decide whether or not she now needs glasses. Given that she already has hearing impairment and social communication disorder causing problems for her learning we want to minimise the effects of anything treatable to help as much as we can – Autism is manageable but not curable. Vision and hearing can be aided. The May clinic got cancelled and we were given an appointment at the June clinic. The June clinic has now been cancelled and we have an appointment for October, some six months after she was due to be seen. Apparently key changes in the eye occur between two and three years, the point of development our daughter has now reached.

The Community Paediatrician that sees our three is retiring in December and there are currently no moves to replace her. This means that key assessments that take place every six months to identify potential issues which may become problematic just will not take place. Potentially our younger son will not be monitored six monthly as he is now whilst he takes Methylphenidate for ADHD. Our younger son requires additional speech & language therapy input, however at NHS level they no longer offer this beyond the age of four due to 'lack of resources'.

Our younger son is not thriving in a mainstream school, therefore we are having to jump through hoops to try to obtain Statutory Assessment for him so that he may attend either a mainstream school with specialist Autism unit or a special school to try and ensure the best possible education for him. All this knowing that Statements are actually going to be abolished next year.

Since our eldest was diagnosed with Autistic Spectrum Disorder some five years ago we have had to fight and fight hard, for an income, for our children's health and education, even for continence products. It's humiliating and we have to contend with media assertions that we are somehow scroungers and a drain on the system like we're doing this somehow deliberately….

Prior to the General Election we saw our local MP Francis Maude door to door visiting. I told him our fears of cuts to services and benefits for the disabled and their carers, and he told us that we had nothing to fear and that we'd be protected due to David & Samantha Cameron's experiences of having had a disbled child. I did not believe him then and so it has proven to be. The concept of protecting the vulnerable sadly does not sit well with Conservative ideology. I also felt rather nauseous at his use of the Camerons' situation to obtain votes. It didn't work in this case as it happens anyway.

It is utterly soul destroying. We are worried sick, stressed, not sleeping through worry. We have tried to highlight our case publically as generally people really do not know what the disabled of this country are facing under the Coalition. We have contacted the Guardian and have asked Mumsnet to highlight our situation to no avail. The Daily Mirror did feature a snippet in less than 100 words that I felt didn't really address the issues fully. All I want is for people to be aware of what is happening, anyone can become disabled in the blink of an eye so the "couldn't/wouldn't happen to me" argument is null really.

There is a very real danger of throwing the disabled and their carers into poverty and removing their dignity. At the same time access to decent healthcare and a basic education is also being swiftly eroded. I feel so helpless and invisible, and that the country at large just cannot see us.

Postscript from 4 April 2011:

Under the new Government Universal Credits system we WILL lose half of the disabled child premium we formerly received under tax credits. This is not proposed, it is definitely happening. See http://www.touchstoneblog.org.uk/2011... . So whereby we previously received a top up to our tax credits of £52.21 per week we will now only get £21.06. It went through extremely quietly and has been completely missed by most of the media.

We are dependent on every penny. Even without the DLA reforms we now have to find something to cut back to accommodate this. Water and electricity bills due to continence issues? Fuel to get to and from hospital appointments? Clothes to replace those wrecked when they were having a screaming meltdown or chewing them? Which would you cut? Having a disability is more expensive just to put you on a level playing field with those without disabilities lifestyle wise. It's not a question of luxuries.

The Other Royal Wedding

I was 10. I was very excited. I thought Lady Di was wonderful and Prince Charles was sophisticated and gallant.

The day before the wedding was hot and windy. I was standing in the doorway of our lounge and the patio doors were open. A gust of wind blew the door shut with my hand still on the jamb. I distinctly remember the pain and flicking my hand out, you know, the way you do when you've hurt your finger. But when I flicked, blood sprayed…

The next thing I remember is my dad holding the wound – thankfully only one finger had been squished – directly under a cold running tap. And then we went to hospital. My fingernail was gone – not broken off, gone. My mum – who'd been out when the accident happened – found it on the floor. I remember seeing it, but I don't know why she saved it. Anyway, it was the first time I realised that there was more nail than you could actually see. In fact, it went down as far as the first knuckle (if that first bit is a knuckle… the first bend anyway).

Can we just take a moment to think about my mum? This was 1981 – no mobile phones. Mum was out and came home to find an empty house, blood sprayed up the living room wall and door, a note saying 'Gone to hospital' and a fingernail on the carpet.

I had six stitches right across my finger, about half a centimetre down. That night, I watched the fireworks, my bandaged finger resting on a cushion and throbbing.

The next day I watched the wedding and wished I was there, tragic finger and all, on The Mall watching the royals go past with a souvenir periscope. But it wasn't to be.

It all makes me sad to think about now. Just that photo of Charles and Diana above makes me ache with nostalgia. For 10-year-old me with my scabby finger and my scrapbooks. For my mum and dad who, then, were not much older than I am now. For poor Diana and William and Harry. Not so much for Charles. He lost me when he asked his mother for permission to kiss his own bloody wife and things just went downhill from there.

I didn't actually intend to write about this – I was just going to tell you that author Lucy Coats… actually, no. Just go and read her posts – Part 1 Part 2 and Part 3. Even now, knowing how it all turned out and not being a royalist at all, I'm still incredibly envious.

This was my favourite picture when I was 10. I was so jealous of those bridesmaids. Love the little duck face on the first girl on the left. (Is it India Hicks? How sad will it be if it turns out I've remembered that for 30 years?)

Did you want to be a princess?

Remember this Princess?

There was an article in Saturday's Guardian called The Princess Problem. Written by Nick Duerden, it's about his uneasiness with his daughters' fascination with all things, you know, pink and sparkly. Fair enough. But then part-way through, an author named Jerramy Fine pops up to tell him that girls grow up wanting to be princesses. She says, "It is something all girls feel at an instinctive level. They don't continue to obsess us because Disney endlessly peddles it. They continue to obsess us because it is truly, deeply what all little girls want."

I admit I didn't read the article originally. I'm as bored of the whole pink/sparkly discussion as I am of anything Royal Wedding-related, but when my friend Alex tweeted about it, I read Fine's comments – and her reply to Alex on Twitter: "you can't deny that princess fixations existed well before Disney – for centuries in fact…" and have been thinking about them since.

All girls? It's what ALL little girls want? I asked Harry if the girls in his class want to be princesses and he said yes, they do. All but one. So not "all" then. (And that was a pretty small survey – I think there's ten girls in H's class. When I started naming names, he wasn't sure about a couple of others either.)

I was fascinated by Princess Diana, was glued to the TV on 29 July 1981, collected memorabilia and went to see the dress when it toured the country, but I don't remember wanting to be a princess. I do however remember wanting to be the blonde one from Abba, Pamela Ewing and a Charlie's Angel (I would've preferred to be Cheryl Ladd, but my sister was blonde so I got to be Kate Jackson).

About twenty years ago, I regularly looked after four children – two boys and two girls – and I don't remember the girls wanting to be princesses. Before that I was a nanny (okay, a "Mother's Help") to a particularly "girly" girl, but I don't remember her wanting to be a princess. I don't remember my three female cousins being princess-obsessed. My aunty – who is quite the royalist – has never mentioned wanting to be a princess, nor, as far as I can recall, did my mum. I think if I'd asked my nan if she dreamed of being a princess she'd have laughed in my face. But maybe I'm just remembering it wrong.

So did YOU want to be a princess? Tell me. I'm dying to know.

Rude awakening

If only we could keep him in a cot...

It may seem that after saying I had nothing to say I've done nothing but post on here, but I'm trying to get back in the habit of blogging more things that I tweet and facebook since it's much easier to find stuff again on a blog. So…

For most of winter, Harry slept in our room with us. His room can't have a radiator (long story) and is FREEZING from about October to February. Because we're wusses, we let him stay until mid-March and since he's been back in his room, he's been getting up and coming in to us at least once a night.

Last night he appeared at my side of the bed at ten past one. I was already aware of him and when I opened my eyes, there he was: lips pursed for a kiss. I kissed him, told him it was the middle of the night and escorted him back to bed.

What seemed like just a few minutes later, I heard the bedroom door opening and waited for him to come round again, but instead I heard him say: "I really really–" before David let out something akin to a frightened bellow. It was pretty loud. I jumped and said a couple of inappropriate words and Harry, understandably, burst into tears and threw himself on the bed.

Harry had been about to say, "I really really had a bad dream" – because that's what he says every night – but David had actually been having a bad dream, featuring Harry, and then Harry was there, waking him up and giving him – and, it turned out, all three of us – quite a start.

I told Harry he could stay with me and David could clear off to his bed.

"That scared the heck out of me," Harry said, once he'd stopped crying.

Of course then Harry went straight to sleep and I lay fretting for quite some time. Gah.

Prettifying pavements and potholes

Artist Juliana Santacruz Herrera walks around Paris, patching up pavement cracks with wool. (You can watch a video here.)

Artist Pete Dungey plants gardens in the potholes on British roads…

Since our local council announced they'll no longer be filling the holes in our roads (at one point there were 4000 of them, but I don't know how many there are now…) maybe I'll have to start doing something similar…

{via A Cup of Jo}

Easily pleased

One of the things I love the most about Harry (and there are lots of things I love about Harry) is how easygoing he is. He nags at us for stuff ALL THE TIME (at the moment it's a trip to Legoland Windsor – "Look, Middy! Kids go free on selected dates throughout the year!" – and a Zooble or twenty), but he's never that bothered when he doesn't get it. As I may have already mentioned here (if not here, then certainly on Twitter and Facebook), he declared our recent weekend staying at a Premier Inn in Liverpool better than both Butlins AND Disneyland Paris.

We were supposed to be having a pyjama day today – well, originally we were supposed to be going to the seaside, but a combination of less than impressive weather and David's late night last night put the kibosh on that – but then we decided we needed both fresh air and food and set off to walk to our nearest Tesco. It's about a 45 minute walk and after I'd done the shopping, we stood outside eating the Magnums I'd just bought.

"Look at us," Harry said. "One big happy family, eating ice cream at the shop."

Reading… Caddy's World by Hilary McKay

I'm lucky enough to be sent lots of books to review. I almost always* try to read the first chapter to see if it grabs me before deciding what to do. If I like the first chapter, the book goes on my (enormous) TBR pile. If I don't, it goes on my (equally enormous) give away pile.

When Caddy's World arrived, I thought it was a very pretty cover (and it's a hardback with the cover printed directly on rather than on a dust jacket – I like that) and sat down to read the first chapter… and then just kept on reading. I can't ever remember doing that before!

If you've read any of Hilary McKay's Casson Family books, you'll know just what to expect, but I hadn't so I was just… The quote from The Guardian on the cover says "Entrancing" and it's exactly right. I was entranced.

I finished it this morning in tears and I can't wait to read the rest of the books in the series. It's just a sweet, funny, clever, sad and magical book. I absolutely loved it.

* Sometimes I don't read the first chapter. Sometimes I don't even read the back cover blurb. Sometimes I only have to look at the cover before a book goes on the give away pile. Like this one.