Tuesday, 30 April 2013

jam jar etiquette : lesson four

Jam AKA The Trouble Maker

Sound a bit odd, but it's true.  There are some aspects of jam making (jammin', jammin', I hope you like jammin' too...) that should be absolutely straightforward, but oh no no no, that would just be too easy.  The universe dictates that something so yummy has to have some rubbishy things to balance it up ~ this is a recognised phenomenon, often referred to by clever science bods as the 'no pain no gain' theory.  So, jam is delicious, but there a couple of points where you need to stop singing into your wooden spoon microphone pretending to be delete as appropriate Beyonce / the Weather Girls / Oasis / Meatloaf (or is that just Mr Manley?), and concentrate on the jam.  I know it doesn't seem fair and you love this song and you haven't heard it for ages and you're right, dancing along in the kitchen very definitely does count as exercise, but just for a minute, focus on the jam!

What's all this about saucers in the freezer?

This is to do with testing to see if the jam will 'set' ~ which means  whether, when the jam has cooled in the jars, it will be that kind of semi~solid consistency.  To a certain extent this comes down to personal preference ~ I like jam to be runny so it sinks into the toast or crumpet or scone, but Mr Manley likes it thicker so it sits on the top all lumpy.  However you like your jam, you need to know how it will be once it's cooled, but the catch~22 here is that you need to know while it's still hot, and this is where the saucers come in . . .

Monday, 29 April 2013

alphabet boy

A  for appointments, abnormal, and anaesthetics ... sixteen now ~ or seventeen?

B  for blood tests, biopsy, bleeding and bruises, bruises and bleeding ... pale skin marred by deepest purple, blooming as we watch

C  for chromosomes, consultants, constant attention ... so many things you never seem to have enough of

D  for dribble, dysmorphic, dislocation ... developmental delay growing week by week, and year by year

E  for epicanthic folds, endocrinology and elbows that don't fit together

F  for fused bones, falling over, fevers and fits ... so familiar, so frighteningly routine

G  for genetics, and glasses ~ bi~focals ... constantly smudged with weetabix finger marks

H  for hemophilia, hydrotherapy, hypermobility ... joints that go the wrong way, it still turns my stomach to see you bend

I  for incontinence, infections, injections, intravenous hydration ... your eyes go wide, we hold you down...if only you'd drink

J  for jaundice, and joints ... no problems with joints I say, then remember...except jaw...hips...elbows...wrist...ankles...

K  for keppra, karyotype, and those kidneys of yours ... fused one into the other, and in the wrong place

L  for lumbar puncture, lopsided features and learning difficulties ... letters and numbers just marks on a page

M  for medication, makaton, mutations ... heartbreak wrapped within words of cold science

N  for neurologists,  nutrition, nosebleeds, nappies ... bigger every year, every year less acceptable to those outside your world

O  for occupational therapy, out of hours and orthotics ... supporting your joints, lending you strength

P  for paediatrician, plaster casts, pain ... pins and plates buried deep within your bones

Q  for quiet ... those days of silent shaking, of eyes that can't focus and ears that can't hear

R  for retarded growth, resuscitation, reactions to meds ... unexpected, unpredictable, un~undo~able effects

S  for special school, scoliosis, surgery, seizures, splints and scars ... hips to knees, abdomen, wrists, chest ~ reminders of surgeries past

T  for transfusion, temperature, tubes, tonsils, tripping up ... and falling down, meeting the ground face first

U  for understanding, unresponsive, unknown ... unknown everything, no one offering answers, no one sure of anything

V  for vaccinations, veins and vertebrae ... an op for after you're grown, pushed to the back of our minds for now

W  for walking frame and wheelchair, within and without ~ within your world, without compare

X  for x rays ~ hips and spine and wrist and elbows and feet and hands and skull

Y  for yawning ... we all hold ourselves tense til your jaw lines back up, no trips to A+E this time ...

Z  for zig zag ... up and down and up again ~ heart rate, o2 sats ~ zig zag, zig ... zag ...

* * * * *

This is my 'people who don't know Smiler' alphabet ~ the 'people who do know Smiler' alphabet will be making an appearance soon!

Wednesday, 24 April 2013

noah and me

This was at Lawrence Weston Community Farm a couple of weeks ago ~ Smiler was watching the goats, trying to push his hat up a little because it was pressing on his glasses.  Noah knew I was taking pictures, and kept making faces ~ I think he was trying to put me off!    Petal ~ well, I have a feeling this is a glimpse into her future, and I'll see this expression very very often once she's crossed that bridge to  Teenage~dom...

Out of the three, it's Noah that stumps me.

I have struggled to be what he needs me to be, so I don't often get to see this playful side of him, this wonderfully innocent child, full of the joy of making mischief.  To be completely honest, it makes me sad to think of Noah coming to the end of those years of hugs and chocolate~y faces ~ I feel like I should have done more of the fun stuff with him, and I worry that as he grows he'll look back on these early years and all he'll remember of me is the shouting and telling off, so that's who I'll be to him.

Noah and I ~ I'm not sure quite how we got to this point with one another, and I'm not sure how to fix it.  Have any of you ever struggled to have a positive relationship with one of your kids?

Monday, 22 April 2013

make it monday : making faces

Another not quite typical make it monday today, but the camera people have my camera and, fingers crossed, I should get it back soon.  But for now, making faces ~ I know it's pretty tenuous, but hey, it's the best I can do.  It could be worse.  And it will be, if I don't get the magical time freezing picture machine back soon!

First ~ Petal.  She can get that tongue up her nose ~ actually up her nose.  Gotta get a photo of that to embarrass her with in years to come . . .
. . . and this is her scary face. Uck!  Pretty scary!  If you ignore her hands pulling her eyes down, she kind of looks like a candle, melting ~ there's even little droopy bits on each side of her mouth!

Noah makes some great concentrating faces . . . Don't know what he was doing here (apart from it clearly involving glue), but he must have been focussing really hard!

Friday, 19 April 2013

bristol brownies : post four

Didn't take long for a reply from Ms Girlguiding this time, so here it is:

Hello Lucas

Thank you again for your comments, as I have explained stepping down from the role of Unit Leader at the age of 65 is current Girlguiding policy, however the Executive Committee are committed to ensuring that this policy will be reviewed regularly in order to ensure that the policy reflects the needs of both the girls and Volunteers. If Hillary would like to make a direct complaint about the policy then please do encourage her to do so.

Kind Regards

 So, it looks like that's it.  I said at the beginning that I didn't know how far we were going to get, and it certainly seems like Ms Girlguiding thinks this is the end of the road.

Thursday, 18 April 2013

not a victim : going back

{although not explicit, this post may contain triggers for those individuals who have personal experience of abuse ~ please take care of yourself}

So I went back to Crawley, to the social worker who had driven me away from that house three years earlier.  She introduced me to Jane from the Child Protection Team, who was fantastic.  Thinking back, I can appreciate the way in which I was encouraged to take  control of what was going on ~ I choose where we sat, I choose when to take a break and have a drink, I choose when to go out for a walk to get some fresh air and have an ordinary conversation about films or books or anything else unconnected.  Jane's open questions gave me the chance to drift off on a tangent when I needed a few minutes breathing space from the pain and humilation of describing my father raping me.  A whole raft of simple  psychological tactics to empower the individuals making statements,  designed to allow them control over telling their story, in clear contrast with the lack of control they had at the time.

* * * * *

not a victim

. . . I've gathered all the posts here which contain more than a passing reference to the violence and sexual abuse in my past.  I am lucky enough to be able to use words to slide the memories and experiences out of my head and onto the paper ~ or screen, in this case, and for me it's therapeutic, but I am very aware that others might struggle with reading these.  I hope that you're able to take a look ~ I don't tend to be explicit, but if you'd like to know more before reading, just drop me a line and I'll do everything I can to help.

The other point that I wanted to make was that I haven't separated these off because I'm ashamed or embarrassed, because I'm neither of these.  I know my openness about what happened in my childhood makes other people feel uncomfortable, and I wonder what I can say to let them know that it's okay ~ really ~ it's okay.  Until sexual crime is no longer a taboo in our society, individuals will fear being stigmatised ~ not wanting to be known as 'that girl who got raped' is an effective deterrent to reporting sexual assaults of all types, and it shouldn't be.  Rape is never, can never, be the 'fault' of the person that was raped.  Language featuring highly for me in this area too ~ I'm not a victim, I'm not a survivor ~ I'm not 'the woman that was raped', any more than I'm 'the woman who just bought bananas in Asda', or 'the women who grew up in Sussex'.  I flat out refuse to let what someone else did to me to define who I am.  

So I went back to Crawley, to the social worker who had driven me away from that house three years earlier.  She introduced me to Jane from the Child Protection Team, who was fantastic.  Thinking back, I can appreciate the way in which I was encouraged to take  control of ...

Once I was out, I never planned to go back ~ as far as I was concerned, it was time to start over.  I moved to Bristol to attend university, but for all my idealistic daydreams, being by myself was more difficult than I had anticipated.  Everybody else had somewhere to go for the holidays, family to spend christmas...
Happy Mother's Day.

Just one sentence
but so many lies

Were you ever happy?  Really?  Inside?  Or only on the outside, only when people were watching?  That was all that mattered after all, the way it looked, the way we looked...
The last time my father spoke to me, he was on the doorstep of the foster home I'd been living in for over a year.  His forehead  furrowed and his head tipped quizzically to one side as he looked me in the eye and quietly asked "I just don't understand . . . why are you so bitter?"
What is it like, to spend sixteen years being a parent, and then for  that to be over?  Not in a tragic, terrible way, where you can be furious at the stupidity and carelessness of a drunk driver, or cry bitter tears at the cruelty of an agonising terminal illness...
I remember the first time I realised other families didn't work the same as mine.  I was eleven, and having tea at a friend's.  Sophie and I were both from a fairly 'well to do' background ~ to everyone on the outside, we were an ordinary family.

Tuesday, 16 April 2013

Bristol Brownies : post three

Another email today from Girl guiding, in response to this one from me ~ I've cut and pasted here in full, the numbered answers relate to the numbered questions in that second email I sent them.  Confused yet? 

Hello Lucas
In answer to your questions:
1.     Volunteers over the age of 65 can continue volunteering in any role except for the role of Unit Leader – we do not prevent Members over the age of 65 from Volunteering and are therefore inclusive of all ages.

Monday, 15 April 2013

thinking allowed explored

We are all bombarded every day with huge amounts of information and a wealth of other people's opinions, and it is easy to take these at face value.  Maybe because of my history I'm loathe to do that ~ put in the simplest of terms, things are not always as they seem.  Taking the opportunity to consider issues which catch my attention helps me feel better informed about the world we inhabit, as well as the society we're part of.  

Thinking allowed is where I plan to collect those posts that are just me, thinking my way through life ~ contemplating those social issues and ideas that come up from time to time in the newspapers, or that I wonder about for whatever reason.  Some of it is sparked off by personal experience ~ I'm a parent, a friend, a wife, a lover.  I've cried over nothing, and smiled when it felt like I was dying inside.  I have a child who is unique ~ but then aren't they all?  I had a rough childhood, but some people tell me that's a good thing.  By revisiting experiences and setting aside time to ponder the what~ifs along with the who, why and how's, I'm hoping to get a better grip on the things that are most important.

As you probably know if you've spent much time hanging around here, my eldest child, Smiler, is not exactly General Issue.  As soon as Mr Manley and I were parents, we were parents of a child with complex needs, and our outlook on the world was irrevocably altered.  Issues relating to children with disabilities,  with the concept of disability itself even ~ these were not, being completely honest, something that had I had thought very much about.  Suddenly, these became personal ~ as personal as it gets.  Instead of dry text on the page of a medical book, or theories and opinions being argued by councillors and politicians, this was my gorgeous son : this was his potential; his blood and joints and heart and brain; his communication, his medicines, his appointments ~ his life.  There is always another crisis on the horizon, another struggle on the way ~ of one type or another.

Things change when you slide into the 'children with additional needs' subculture ~ you see things from a different perspective ~ the people around you, the places you go, the things that are (and aren't) as important as they used to be.  And the people on the outside ~ they talk about you to one another, they wonder how you cope, they're not sure what words are okay to use in reference to your child ~ at least that's what you hope.  But every so often you get a glimpse through other people eyes...and sometimes you wish you hadn't.

It's the day to day things that often seem to get the wheels in my head turning ~ the invisible barriers, the issues that people outside of this world could not even begin to contemplate ~ like genuinely fully accessible toileting and personal needs facilities for example ~ it's great to see 'disabled toilets' everywhere, but what about individuals, including my son, who have no use for a toilet, but instead require a suitable surface to lay on while being changed, and sometimes hoisting equipment?  Most likely, you haven't ever thought about it, but probably nine times out of ten we have to lay him on the floor.  The floor of the toilet.  Yep ~ breaking the poo taboo ladies and gentlemen ~ give it some thought!

Something else that barges it's way in and occupies my thoughts from that time to time relates to my  experience of childhood.  Those memories that get stirred up every so often, like thick sludge at the bottom of a puddle, disturbed by a curious child holding a stick.  Because of the potential of these posts to trigger reactions for people who have had similar experiences, I've created a separate archive for them ~ please do take a look.

make it monday : needle felting baddies

Not the usual make it monday post today I'm afraid, my camera and I have had a slight difference of opinion, so no new photos.

{in case you're wondering how one has a difference of opinion with a camera, this is how it goes ~
Over breakfast in the kitchen
Lucas: Well, it's make it Monday tomorrow so I wonder what I should make.
Children: Make cheesy feet!  We haven't had cheesy feet for ages ["ages" = two weeks when you're ten]
Lucas: I was going to do something non~food...
Children: But we love cheesy feet!
Lucas: But all my makes have been food for weeks!
Children: But we love cheesy feet!
Lucas: Okay small people, let's make cheesy feet.  You get the ingredients out while I get my camera.

Saturday, 13 April 2013


I know it was last week, and chocolate eggs feel like forever ago now, but here in Bristol the cold and rain seem to be here to stay, so writing this is my way of hanging on to just a twinkle of that sunshine . . .

Amongst the soggy days of the easter holidays we had a day that looked promising so we decided to make the most of it.  The easter egg hunt was scheduled for the Sunday, but we didn't want to bring it forwards ~ after all, we could always do it indoors if necessary, but what else to do with these unexpected blue skies and warming sunshine?  Luckily my amazing Mr Manley had spotted some activities going on at Lawrence Weston Community Farm, so we headed over there.                  

* * * * *

Thursday, 11 April 2013

Bristol Brownies : post two

This is the email response from Girlguiding to my initial email.  

Dear Lucas

Thank you for your email. As an organisation with over 500,000 Members across the UK, Girlguiding receives a substantial amount of attention via social media and blogging sites. We are therefore unable to respond directly to comments on unofficial Girlguiding blogs, websites or social media pages.

The retirement policy was changed in January 2011 with a transition period between January and April 2011 in order to give Leaders the chance to plan and make arrangements for these changes. Girlguiding appreciates all of the hard work that Leaders put into volunteering and aims to be inclusive of all, regardless of age. Prior to 2011 all Volunteers over the age of 65 were required to retire, the current retirement policy allows Volunteers over the age of 65 to continue volunteering in any role except for the role of Unit Leader, Volunteers over 65 are able to continue volunteering in roles such as Assistant Leader and Commissioner if they wish to.

If you have any specific questions about the retirement policy please feel free to get in touch and I will try to answer them for you!

Kind Regards

So, they would like specific questions regarding their retirement policy ~ who am I to disappoint?

Tuesday, 9 April 2013

Bristol Brownies :

An open letter to Girlguiding

Were you ever in the Brownies, or Guides, or Scouts or anything?  Petal is a Brownie, and is really enjoying spending time with different people, doing different things ~ all good as far as I'm concerned.

I was initially wary of Petal being exposed to the subtle but persistent religious ~ ification (and yes, I know that's not a word) of Brownies. Since Petal's Brown Owl, Hilary Winterson, was (and I trust she won't mind me mentioning this) clearly an older leader, I was expecting what I should probably carefully refer to as a traditional attitude.  Having met Hilary however, my mind was put to rest.  Clearly a strong independent woman with a refreshingly modern outlook on life, Hilary was not the slightest bit concerned when I mentioned that Petal and I would be writing her own promise, in order that it be relevant to her in her daily life.  Hilary did not miss a beat before telling us she's all in favour of the girls having this kind of input, and agreeing that it was obviously not appropriate for Petal to make a promise involving a god she doesn't believe in.

* * * * *

Monday, 8 April 2013

make it monday : jam cake

I know, I know, it doesn't sound particularly appealing, but seriously, you have to give it a try.

The ingredients are simple, but you have to (pretty minimally) use your head for the weights ~ just scribble the number down and you'll be fine.  Trust me.  You're going to need eggs, plain flour, sugar, baking powder (2 tsp), bicarbonate of soda (½tsp), vanilla flavouring/essence/extract/paste and jam ~ the runnier the better for the jam.  I used blueberry apple jam, which bring a bit of colour to the cake, but you could use lemon curd instead ~ just go with what you like.  The amount of jam you'll use is kind of up to you ~ as a guide I'd say around 8tbsp {tbsp = tablespoons} for the bigger cake, half for the smaller, if the jam is quite solid, more if the jam is so runny that your spoonfuls end up level every time!

Before you start, make sure you've got everything to hand that you'll need ~ take the marg out of the fridge (and eggs, if you keep them in the fridge, although I'm sure I've read you're not meant to), turn the oven on ~ 180°c fan oven, 190°c or your equivalent.

Weigh three eggs.  Take away 15g, and the amount you have left is the amount you need of each other main ingredient ~ plain flour, marg, and sugar.  As long as your amount is around 200g, this will give you two loaf cakes, one small (450g/1 lb) and one large (900g/2 lb).  If your weights are closer to 150g (smaller eggs), it might be best to add another egg, and then take off 20g instead of 15g (for the shells).  Still with me?

make it monday posts

Sunday, 7 April 2013

helicopter museum

Visited The Helicopter Museum near Weston last week, and ... well, there's a lot of helicopters there.  I'm sure it would be the best place in the world for your children (or you!) were aiming to be a helicopter pilot when they grew up, but unfortunately our visit was unavoidably cut short, so I can't really say much more as it's all a little fuzzy.  

I was (as usual) sucked in by the industrial looking  bits ~ check out the photos at the top!
There was a pedal powered helicopter.  No, really.
And a remote controlled flying saucer.  No, really.

Saturday, 6 April 2013

my family

My family are the centre of my entire world ~ the laughter and the tears, the past and the future, the hopes and the reality.  Most days I get frustrated, most days I shout (loudly), and every couple of months I feel overwhelmingly sad, and it all becomes too much so I hide away from the world until the fog lifts.  Our lives are our people ...  those people we share our days and hours and minutes and seconds with; those people who know our most hidden of fears and most treasured of hopes; those people we hold so close they become a part of ourselves; those people that make us real.

My family is . . .

. . . a funny bunch of people that I love very much.  Smiler, who comes complete with a medical dictionary, usually has a cheeky grin on his face, and eyes that alight with sparks of mischief at the slightest provocation.  Although he has faced a  multitude of challenges in his eleven years (and counting), Smiler has retained his sense of fun throughout and, although I'm obviously utterly biased, I think he's a hugely kind~hearted, amazingly determined and completely gorgeous child, who is going to grow up to be an inspirational adult.  Next in line is Noah, a year younger than Smiler.   Very much like his dad (Mr Manley), Noah has a wonderfully relaxed attitude towards life ~ most of the time!  He loves to read, often taking a book to read in the car even on short journeys, and right now is very into Doctor Who.  He and I don't always see eye to eye, but Noah is developing into an enthusiastic and capable individual, increasing in confidence month by month.  Petal is the youngest, a year younger than Noah, but definitely the bossy boots of the bunch.  Loves animals, loves drawing, loves junk modeling ~ bit of a hoarder I think, like me.  Eli is a fantastic addition to the household, and definitely adds to the fun, even just going out for a walk, or taking him to get a haircut, playing in the snow ~ he also doubles as a weighted blanket for Smiler on those days he wants something warm and soft and fluffy and heavy on his lap ~ it's a win win!  Mr Manley is the gorgeous individual I seem to have somehow bamboozled into being with me.  He looks after me when I'm low, and helps me get a little perspective when I need it.

* * * * *

My family is . . .

. . . chaos. Day to day life in a family of five is always going to be teetering on the edge of chaos, and while we usually manage to come down just on the 'not quite there this time' side, there are plenty of times we've been getting on with something and a sudden flash of clarity has left me gazing around, wondering how we had managed to get ourselves into this.  From 'do other people ever do this, or am I really strange?' {trying to get ready more quickly in the morning by putting my socks on while I'm sat on the toilet} to 'maybe if I just completely ignore it, it will go away' {small girl child's verruca} via 'does it really matter?' {that the kids are having beans on toast for lunch for the third time this week} and 'I'm sure I'll be able to knit much faster' {if I bought some fancy new needles}. 

* * * * *

My family is . . .

. . . memories.  Looking back now, I'm somehow surprised that we made it through those first first few years ~ three babies born in less than three years!  Early days with Smiler were busy and complicated, but I think being given such a grim prognosis, combined with him being our first child, actually meant that ever little thing he learnt to do was a huge deal!  We tried do a range of things that would be fun for them ~ plenty of painting and cooking and soft play ~ trying to show them as much of the world as we could.  There are so many memories of daft things we did ~ playing at being hairdressers, and dressing up as sausage rolls ~ by sharing these I'd like to think that someone else gives something equally silly a try!

* * * * *

My family is  . . .

. . . looking forward.  I love how independent Noah and Petal have become over the last couple of years ~ I guess since Smiler has his own timetable we can appreciate the changes in the type of parenting Noah and Petal require, compared to Smiler.  Ordinary family activities suddenly become much more complex when you need to know about wheelchair access and changing facilities, every day trip has to be checked out in advance, which can cut into the spontaneity just a tad!  Petal and Noah can both ride bikes now, which means a little more free fun is on the menu this summer, and since Smiler is doing pretty well on his feet I'm thinking we're going to be out and about a fair bit.

So there it is ~ my family.

* * * * *

Friday, 5 April 2013

not a victim : getting out

You should be aware that this post, although not explicit, may contain triggers ~ please remember to look after yourself.

Once I was out, I never planned to go back ~ as far as I was concerned, it was time to start over.  I moved to Bristol to attend university, but for all my idealistic daydreams, being by myself was more difficult than I had anticipated.  Everybody else had somewhere to go for the holidays, family to spend christmas with, phonecalls to make on mother's day ~ I was still the odd one out, but at least I could wait for a bus without scrutinising the faces in every car that went by, I could take my time choosing a cd and not feel I had to keep track of every person coming in the shop, just in case.

* * * * *

Thursday, 4 April 2013

Monday, 1 April 2013

bristol brownies archive

This page is here to gather together the posts relating to Petal's Brown Owl, a lovely, principled enthusiastic woman named Hilary.  Hilary is staring down her 65th birthday, but Girlguiding policy states that at 65 she must step down as Brown Owl.  Although I've been sucked into this debate on a (very) local level, this impacts on we omen all over the country, so hopefully you'll be able to have a read and show your support.  If you'd like to be involved in a low fuss / no stress way, drop me an email ~ I can send you an {insert name here} email for you to send to show your support for Hilary and all the other women facing this enforced demotion after having devoted huge amounts of time and energy and passion and commitment.

the virgin's guide to jam jar etiquette

Here's the twist ~ you have to get your head around the jars before you start on the jam . . .

jam jar etiquette lesson one asks 'why make jam?'; whether to buy new jars or reuse those you already have; and how to store empty jars should you decide to reuse.

jam jar etiquette : lesson two asks whether you suffer from the stinky jar problem, and showed you a way to triumph over the stinkiness.

jam jar etiquette : lesson three asks 'sterilizing jars ~ why and how?'; there are a few ways to sterilize jars ready to fill them with yummy homemade jam, chutney, or marmalade.  Different methods work for different kinds of jars, so this time the most frequently used type of jar will be sterilized step by step.

jam jar etiquette : lesson four asks 'what's all this about saucers and freezers?' and explains the abstractLucas  method of checking the consistency of your jam.

Coming soon : jam jar etiquette : lesson five asks do I have to do it on my own, all by myself, all alone and lonely?  How to involve your children in making jam
and lesson six looks at how to sterilize jars with rubber seals


And so here's the jam . . . yum . . .

tropical fruit jam
The amounts of each ingredient might look a bit odd, because I've used the weights of the tins and based the recipe around those ~ trust me when I say it's easier that way round!
Whatever apples you have are fine ~ bruises and all.  A bit shrivelled  and kind of soft from sitting in the fruit bowl for too long ~ still fine for this.
So, you'd like to make lemon curd?  How very fortuitous* ~ I happen to have the recipe right here . . .

the story of Smiler

I was wondering through the abstract archive a few days ago and realised that while Smiler is (naturally) mentioned in plenty of posts, there wasn't anywhere specific gathering up the posts about him.  People have been in touch so I know there is interest in the stark medical side as well as the day to day fun stuff, so I'm going to start listing these posts here to make it easier for people to follow him through.

One of Smiler's party tricks is that if he opens his mouth too wide his jaw can dislocate.  I know.  Great fun.  When it goes, Smiler's mouth locks open ~ he can't close it, can't swallow ... presumably it hurts, but this is the boy who self propelled his wheelchair with a broken wrist to convince us he was 'fine ... fine mummy fine' ~ and why?  'Home mummy, home time'.

* * * * *
Smiler had broomsticks ~ upper thigh to past ankle in plaster on both legs, braced with what literally was a piece of wood ~ hence 'broomstick' ~ from one knee to the other, so his lower body was like a capital A.
A couple of weeks before christmas Smiler had a run of nosebleeds and the beginning of a cold ~ you know when you can assessee it coming in the colour of their skin, the look in their eye...

So here's a slice of life from the abstract household, also known as 'They did what..? Why?'

Folks have been asking, so I'm going to try and explain Smiler a little ~ very much easier said than done, so please bear with me!  Everyone take a deep breath . . .

So, poor Smiler, this was what we did to him.  You can imagine all the fun you can have with an eight year old with both legs in plaster...

Smiler had his annual check up in Southampton a few days ago ~ I  genuinely hadn't realised that I'd been worried about it, but the amount of relief I felt when we were told everything looked good ~ it's difficult to explain.
this is my 'people who don't know Smiler' alphabet ~ the 'people who do know Smiler' will be following soon!
always an individual with his own clock, Smiler arrived three weeks late at St Michael's Hospital ...
once you've been on the disabled child merry ~ go ~ round for a few years, you get to know what's coming ...
Smiler had a routine neuro appointment back in May 08, when his consultant thought he could see a slight curve in Smiler's spine ~ a fairly common finding in children with neurological issues ...
I guess many, if not all, children with additional needs go through phases where everything kind of rumbles along, nice and calm, and times when things are more difficult ...