Wednesday, 23 July 2014

sunrise in South Bristol


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One positive aspect to having difficulty sleeping is that it means I'm (far too) often awake when the sky starts lightening around 4:20 and, on mornings I feel up to it, I take my camera out to the field behind the house.  

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Standing still at the highest point, breathing deep and slow as the day starts around me, watching as the air changes colour and the soft clouds separate, making patterns across the sky.

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Sunrise in South Bristol - beautiful.

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Tuesday, 22 July 2014

my Field of Dreams moment

I would like to think of myself as a mostly good-ish person.  Not perfect but, you know, mostly good-ish.  Not, you know, all the time, but most of it.  And then I was in a situation earlier today that ... well, actually, I'll start by explaining my mostly good-ish-ness, so that perhaps I will make some kind of sense.  Or perhaps not.  It's been that sort of day.

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I subscribe to a loose system of faith based on human kindness - vague allocations of karma points are involved, as are wooly pseudo-theories such as what comes around will go around - fingers crossed anyway.  I truly believe that if everyone just cared a bit more, the world would be a better place ... Pay It Forward, you know? (incredible book by the way, highly recommended whether or not you've seen the film - after all, most films struggle to do justice to their literary counterparts).  This uplifting belief in the strength and power of a united focus is tempered on a regular basis by recognising the inexplicible damage that people can do to one another, both physically and emotionally.

With this in mind, I try to help.  Sometimes someone specific, more often the system as a whole, but I try and be good-ish.  Mostly.  I know - it sounds trite, but that's the way it goes together in my mind.  So, here are some of my good-ish practices, with apologies for any sickening sweetness (but don't worry, my grumpy self steps in at the end, and stamps her foot and everything)

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I rarely say things for the sole purpose of confusing or upsetting other people, and if do then I feel hugely guilty about it afterwards, and tend to overcompensate.

I give blood, or at least I did until they decided they didn't want my blood anymore, what with the Brain Cloud and everything.

I say please and thank you and often tell people that their hair looks fab, or that their child is just gorgeous, or ask their opinion on the book they're reading, or ask where they got that tattoo.  Not necessarily always strictly the truth, not necessarily of great personal interest to me, but always with the intent of engendering a genuine feeling of pride and positivity in the complimentee.

I've okay-ed blood being taken from Smiler to use for research purposes, every time they've been taking some for some other actually-connected-to-his-wellbeing reason.  I've also given blood myself for these slightly mysterious research purposes when asked, and I'm definitely not getting anything out of it!

We've had medical students visit at home and school two or three times a year, every year, to talk about raising a child with a disability, answering their questions honestly, and sharing our thoughts on whatever topic is the current top trend  from prenatal testing to the financial implications of a disabled child to the emotional toll a child with complex health needs can have on a relationship.

When I was in hospital on the neuro wards I agreed to be poked and proded by the students, even though I was in a lot of pain and answering their questions did not help in the slightest, the opposite in fact - going over and over the presenting symptoms was incredibly draining.  But they're only going to learn by doing, and although I was not at all a happy bunny I was also aware that there were plenty of people around sicker than me.

Petal and I raise money every year for Bristol Hospitals - bake cakes, decorate cakes, sell cakes, rinse, repeat.  Over £500 raised over two years, and trust me when I say that is a whole lotta cakes and biscuits and flapjacks.

I'm involved at various levels with trying to improve services for disabled children and their families in Bristol.  I read reports, attend training, make notes, provide feedback, go to meetings, talk to parent carers, support other parents, draft emails, carry out research - all under the general umbrella of improving services.

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I'm not trying to label myself as some sort of holier-than-thou martyr here - I do get something out of all these things, particularly if you subscribe to the Joey Tribbiani (vs Phoebe Buffay) school of thought which holds that there can be no unselfish deeds, as even if you seem have nothing to gain then in performing an apparently entirely altruistic act you benefit from the sense of satisfaction received.

But earlier today I was in a meeting where I had entirely unsuccessfully tried to balance those competing interests of participation for the greater good and a specific situation with my Smiler.  After behaving with a distinct lack of grace I reentered the room (don't ask), having caught my breath and decided that the most important focus was working together with service big cheeses on the issues at hand.  Big picture Lucas, big picture.

A short while later a comment was made that even if by our forays into uncharted service provision and organisation we suceed little other than to have made the path an easier one to tread for the next parent to come along when my mind began to reverberate with comments made by Kevin Costner.  No, I wasn't slipping into some kind of manic state, a middle aged housewife getting my knickers in a knot over the Postman, but instead sharing a moment of intense frustration and selfishness at a world that sometimes has the gall to demand so so much from us and give so very very little in return, and have the blithe insensitivity to expect us to be satisfied with our lot.

Do you know that Kevin Costner film, Field of Dreams?  I should point out that this wasn't supposed to be a tour of my brain as it links to the American film and tv industry, but hey, sometimes you start out and you're not really sure where you're going to end up.  You remember the bit where Ray Kinsella (Costner) gets angry with Shoeless Joe Jackson (Ray Liota) and shouts about how he's done all these things, all that had been asked of him, and never once asked 'what's in it for me?', and Jackson says "So what are you saying?", and Kinsella replies "What's in it for me?!"

I've spent twelve years doing what's asked of me, routinely going a step further by trying to be mostly good-ish and use the skills that I have to improve services in Bristol, to make things better for families, and now I want to know... 
What's in it for me?

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Monday, 21 July 2014

Point + Shoot


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Smiler at Briarfest; double choc brownies & lemon and white choc blondies; seagull on Cascade Steps, Bristol City Centre; Noah & Petal on Clevedon Beach; baby blue tit in the garden.

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Saturday, 19 July 2014

Word of the Week

A bit late with my Word of the Week post, but never mind - this week it's all about
leaving

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leave 1   (lv)
v. left (lft)leav·ingleaves
v.tr.
1. To go out of or away from: not allowed to leave the room.
2.
a. To go without taking or removing: left my book on the bus.
b. To omit or exclude: left out the funniest part of the story.
3. To have as a result, consequence, or remainder: The car left a trail of exhaust fumes. Two from eight leaves six.
4. To cause or allow to be or remain in a specified state: left the lights on.
5.
a. To have remaining after death: left a young son.
b. To bequeath: left her money to charity.
6. To give over to another to control or act on: Leave all the details to us.
7.
a. To abandon or forsake: leave home; left her husband.
b. To remove oneself from association with or participation in: left the navy for civilian life.
8.
a. To give or deposit, as for use or information, upon one's departure or in one's absence: He left a note for you. Leave your name and address.
b. To cause or permit to be or remain: left myself plenty of time.
9. Nonstandard To allow or permit; let.
v.intr.
To set out or depart; go: When can you leave?
Phrasal Verbs:
leave /let alone
To refrain from disturbing or interfering.
leave off
1. To stop; cease.
2. To stop doing or using.
Idiom:
leave no stone unturned
To make every possible effort.


sourced here

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So Noah is leaving.
Leaving drawers and topic books.
Leaving pegs with your name on.
Leaving weekly spelling tests.
Leaving reading schemes with different coloured stickers on the spines.
Leaving a school where, if you're lucky, you will have earned your 'pen licence' and no longer have to write in pencil.
Leaving people you've known since you were four.
Leaving a place where you're the big fish.

Maybe it's more helpful to look at it the other way around - instead of leaving one school, beginning at another.  Moving on, growing up.

Leaving is definitely the word of this week though - and not just because he left his pe kit hanging on that peg, with his name on a sticker next to it.

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The Reading Residence

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Monday, 14 July 2014

In which no one asks if I abuse my disabled child, damn them

Smiler is what is officially known as a regular attender at A&E, and although sometimes it's been because of seizures or nosebleeds, a couple of years ago I got a bee in my bonnet because he'd been seen a number of times for what I (with my social worker / child protection head on) classed as potential non accidental injuries (NAIs), and no one seemed concerned.

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As an example, one day Smiler was playing in his room quite happily (as in, he threw all his toys and books on the floor), and later, when he was sat up at the table having tea, we noticed that he wasn't using his left hand to stop his plate from sliding around.  "Come on Smiler, hold your plate please, you're going to make a mess".  Five minutes later we were telling Smiler that he couldn't have pudding if he didn't at least try to hold the bowl, and when he wouldn't, so we realised something was going on (and fed him his pudding, cos we're not that mean).  Back in the living room I checked his left arm - shoulder fine, elbow fine (when I say fine, it's kind of a relative term - it's dislocated and the bones have fused, so he has no rotation and can't straighten it out), wrist fine, fingers looked a bit swollen but he could still move them all and there was no bruising, so we decided to leave it until the next day and check him over again.  The following day Smiler's fingers were clearly swollen and he still couldn't use his hand as usual, so of we went (after breakfast, of course) to the accident and emergency department of Bristol Children's Hospital.

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So, what did he do?
No idea.
When did it happen?
Yesterday afternoon.
Was anyone with him when it happened?
Nope.
When did you think he might have done something?
Teatime yesterday.


Now, as I said, with a professional background in Child Protection, I figured we would be raising red flags all over the place.  Parents who didn't see what happened, didn't know what he'd done or how he'd done it, didn't seek prompt help, all along with a child who was non verbal - who couldn't give any explanation or correct anything inaccurate that had been said - classic non-accidental injury circumstances.

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The other perspective I have on this is from having been the child who was being physically abused within the family home, and seen several times a year at A&E - well, sort of... Both my parents worked in the hospital - after a fight my father would drive me to the hospital, chat to whoever was on the desk, explain how I'd managed to fall down the stairs / trip over a paving slab / shut my hand in a door again, and I'd go straight through to x-ray.  I'd be plastered if there was a break, splinted for broken fingers, (often with bruised arms and or legs), given the usual advice for cracked ribs.  No follow up appointments, nothing on file, even though I was on what was then known as the Child Protection Register, recognised as being at risk of physical harm within the family home.  No one asked how I had managed to slam my hand in the car door again, or why I had a split lip along with those cracked ribs.  My parents were plausible - my mother particularly, a midwife, a sister on the labour ward, while my father gave the impression of being a slightly cowed husband, amiable, maybe a bit dim, but certainly harmless.  Confident and complete explanations were freely offered to school and anywhere else that might notice I seemed to have more than the usual number of trips and falls, and no one saw anything odd in this.

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So here I was, regularly presenting to the hospital with a child in a situation that ticked every box on a cause for concern sheet, and no one seemed concerned - this scared me, terrified me in fact.  I knew no one was hurting Smiler (who had in fact broken two fingers somehow).  I knew the reason we often didn't know how long ago he'd done something was because he has an incredible pain threshold combined with disliking hospitals and would often tell us 'fine, fine!' and use his hand (or whatever) to prove it, because he knew otherwise it meant going to the hospital, which he hates.  I knew the reason for the delay in getting him seen was because although we often suspect he may have hurt himself, but wait until the following day to give us a chance to observe him using (or avoiding using) that hand / arm / leg.  It was once suggested that we took him in each time he fell down, to get him checked over, but once we explained he falls to the ground maybe four or five times on an ordinary day, this was recognised as being untenable.  Still, I wanted ... needed even to know that these situations raised red flags, and that those red flags didn't get ignored.

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Never before have I seen a professional so utterly confused as the day a couple of months later that I asked why a social worker hadn't come and asked me if my son was being abused, and if not, why he had sustained so many injuries.

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My thinking was that I know Smiler is okay, but also that part of the reason no one was querying his injuries was that I come across as a caring, involved parent, intelligent and well versed in the potential medical implications of his condition - in other words, I was able to provide plausible explanations and appeared to be concerned with his welfare.  Exactly as my parents had.  No one is abusing Smiler, but I don't know if the same is true of the next non verbal child whose parent doesn't bring them in until the next day, and who cannot say for certain what happened to cause their injury.

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To their credit, the hospital took my concerns seriously, and reviewed Smiler's notes with a view to whether child protection concerns had been raised, or should have been raised.  Smiler (and I) were the topic of a specially convened meeting regarding child protection concerns involving disabled children, looking at whether the systems in place were robust enough, or whether the 'oh you're so good with him (I don't know if I could cope)' putting parents of children with significant additional needs on pedestal thing was blinding staff to potential abuse.  I was offered (and accepted) the opportunity to discuss this in depth with one of the department leads, who talked me through the procedures and how cases were progressed when there were any concerns.  Smiler had been flagged at one point and discussed, which made me feel better, and it was clear that the measures in place make it incredibly unlikely (never say never) that a child could slip through the cracks of the system.  I was thanked for my honesty, which seemed strange, but it was explained that they value the opportunity to check their system through, and that they had never before had a parent ask why they weren't being investigated, who wanted to talk through what had and hadn't been looked at, by whom, and why.

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I'm sure my childhood has influenced plenty of my decisions over the years, and this is, to my mind, another reaction to that time.  While I knew Smiler isn't being hurt by anybody, I don't know that about every other disabled child being seen in that department.  I struggle with the idea that a parent can run interference and prevent reasonable questions from arising in the minds of others, and I'm relieved to find that the procedures in A&E are more robust than that.  I'm glad that my questioning triggered a conversation, a reminder for staff about the possibility of a disabled child being abused.  Smiler is still a regular attender at A&E, and we still usually don't know exactly what he did, so I guess we still keep raising those red flags, but I'd still rather be asked awkward questions every single time, knowing that those same questions might also be being asked and those same discussions might be being had about someone who does need help.

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What do you think?  Have you ever felt staff in A&E or school were suspicious of your care for your child?  Do you think they should be more trusting of parents - were you offended?  
Feel free to disagree with my point of view - everyone I love does so on pretty much a daily basis after all!

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