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Thursday, 31 January 2013

hairdressing 101


I was wondering through the rarely visited archived photo files on our family computer (which, it turns out, can in fact work when it feels like it, just not when I want it to), trying to come up with names for the dust bunnies in there that don't sound as if they are working in the adult movie industry, when I spotted these.  Unfortunately I had just taken a sip of my tea and had to do that choking spluttering thing that always looks so attractive.  Fortunately, the tea was, as usual, cold because I have the concentration span of the average two year old in a toy shop, so at least I didn't burn the inside of my nose while snorting and dissolving into a giggle puddle on the sofa.

* * * * *

With two older brothers and a tomboy for a mother, I anticipated  Petal going one of two ways:

Option a ~ Be extra super ultra girly.  Pink, fluffy, twinkly.  Like  soft squishy marshmallows.  Soft squishy marshmallows covered in glitter.  Soft squishy marshmallows covered in glitter singing  Norah Jones.  A complete rebellion against the march of the blue/black/grey sick brigade.
or
Option b ~ Walk the path of least resistance.  Live in jeans that hang so low you wonder what she does when they do actually fall down.  Learn to burp the entire alphabet on just one beaker of fizzy drink ~ the louder the better.  Dig around in the garden to find worms in the soil, and then keep them in a box on the back of her bike as pets (I did that).  Avoid  voluntarily climbing into a bath filled with hot water and anything approximating soap (I did that too).

                                                            (great picture of Petal! ^)

Before anyone starts jumping up and down in rage at my gross generalisations and sexist drivel, I'd like to draw your attention to the fact that this is the point ~ I thought she would throw herself entirely to either one extreme cliché or the other, as a reaction to the rest of us!

What I did not anticipate however, was that Petal would create Option c ~ go fairly girly, and take everyone else with her!  

So, the next time it's raining outside, and you can't find the pencil sharpener to make those colouring pencils use~able again . . . or  the trousers Fred has on are just too filthy to allow him to be seen wearing them out in public . . . or you were planning on playing some wonderfully healthy family board games but you open the cluedo box and some bright spark has nabbed the dice (does this stuff really only happen to me?) . . . 
       
   . . . instead, tip out that drawer or box or bag of hairbands and ribbons and clips, and have some fun!  Its up to you how far to take it, but if you have a wonder round a couple of pound shops at some point you could probably find yourself a salon cape, some of those bendy foam sticks things (I did mention the tomboy~ness earlier remember ~ I have no idea what they're supposed to be called) and a spray bottle!

            Try to convince your little people that this isn't supposed to be an opportunity to get their own back for you having to nit comb their hair last month, and encourage them to take turns.  Clips are do~able for younger fingers, and those that aren't quite so dexterous, while others might enjoy the challenge of plaits and pony~tails.  You could probably call it occupational therapy if you felt so inclined ~ improving hand/eye coordination,  refining fine motor skills, a sensory experience for both the individual doing the fiddling and the fiddle~ee . . . fiddle~er . . . you know what I mean!  

Two very important things to remember though ~ 

          First, hide the scissors, for reasons of safety (so they don't hurt themselves) and sanity (so they don't cut each others hair off ~ or yours.  Yes, you do have to join in.  That's the rules.)

          Secondly, keep the camera handy.  Photographic evidence is a wonderful thing . . . if you're in any doubt, tale another quick peek at Mr Manley . . .

Tuesday, 29 January 2013

my story


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?"

I was originally taken into care for 'a break'.  The words that went unsaid might have just as well been ten feet tall in flashing neon ~  yes, a break for me from them, but mainly, a break for them from me.  I quite simply didn't care ~ I was out, and that was good enough.  One of the difficulties for social services was that in every other situation I was fine ~ academic overachiever, polite, well mannered, but, according to my parents and brother, once at home I morphed into some kind of devil child, uncontrollably angry, violent, and self harming to a worrying degree.  As much as I might wish I could proclaim complete innocence,  some of their claims had grown from a seed of truth ~ I didn't eat at home, I didn't sleep.  Instead, I sat on the floor of my bedroom, with my back against the door.  Every night.  All night.  Doesn't  take a psychology degree to analyse that one.

I would go into each lesson at school and sit down, trying so hard to keep my eyes open.  The teachers' voices were muffled, distorted, as though they were underwater . . . or I was ~ drowning on dry land, struggling to suck in enough oxygen to keep going, always questioning why I was bothering to fight, wondering what it would be like when I stopped. Not if, just when.

In retrospect, I'm not sure anyone realised how fragile that thread was, binding me to life.  Stretched thin as spider silk, brittle as spun sugar, such a precarious link between me and the world other people seemed to inhabit so comfortably.

By ten minutes into the lesson, I would be asleep, my head resting on my arms.  Teachers would wake me up at the end of lessons once the others had cleared out, and give me the homework assignments.  Of course, my homework was always done very thoroughly ~ it wasn't as if I  had anything else to do at night.  I would light candles on the floor next to where I was sitting, holding my hand a foot above the wick, so that I could feel the heat.  It was one of my many strategies to stay awake, to stay safe ~ if I started to fall asleep my hand would drop closer to the flame so I'd be pulled back into consciousness by the pain.

I know now what it was, that intangible thing that stopped me from walking in front of a car, slicing through my wrists, swallowing bucket loads of paracetamol (actually, I did that a time or two, but then threw up ~ turns out five years of bulimia has a bright side ~ it does an excellent job of teaching one how to vomit on command!).  As wretched as I felt, I couldn't bear to make it that effortless for them.  I could picture their tear~stained faces, clutching at one another's hands, desperately mourning the tragic loss of their daughter ~ so convincing, a family united in grief.  Ironically, one of the more useful personality traits I inherited from my father was a never~ending supply of sheer bloody~mindedness.  It was this which, in combination with the absolute inability to let anyone else have the last word created a perfect storm of sorts ~ an immense capacity for anger and stubbornness, stirred up over and over and over again, providing me the impetus to keep breathing.

I can look back at it now and see the humour, but also the tragedy of a teenager so isolated that she had no one to tell what was happening.  Shortly before I left Crawley for university I asked a teacher why I was never in trouble for sleeping during lessons. "You were always so pale, so clearly in need of sleep, and we [the teaching staff] all knew you were having trouble at home".

Trouble at home . . . such an innocuous phrase, as if carefully constructed to dampen down a teenager's natural predisposition to melodrama.  I had often overheard peers complain about parents, commenting on how utterly unfair their draconian rules and restrictions were, how deeply they hated these adults whose entire purpose in life was clearly to wreck and ravage the dreams and enjoyment of their (of course!) entirely innocent offspring.  When you live with real hatred instead of the exaggerated enemy dragon of a fairytale, people can't hear what you say, they hear instead what those words mean to them.  While I looked at you and saw fire and flame, others saw only harmless puffs of smoke, until they realised my skin was blistered and raw, for they could no more comprehend your nature than I could ignore it.

So, father of mine, you were right after all ~ I was bitter.  I still am, even though I've now lived away from you for longer than I lived under your roof.  The day that tipping point was reached, I thought of you and your anger and your lies.  I thought of your hands, bruising me.  I thought of your whispered endearments, confusing me.  I thought of you, and I thought of me.  And I paused . . . and then I moved onwards.  You see, I have achieved something I could never have forseen all those years ago.  I won.  I'm still here.

The best revenge
is to live.

Sunday, 27 January 2013

blanket of stars


Since before christmas I've been knitting (well, technically crocheting) a blanket.  The plan was to finish it for Petal for christmas, but it ended up being put aside for all the other things for people who don't live in the same house as me.  I hadn't really thought it through, and could only work on it when none of the children were around because they would have wanted to know who it was for, and Smiler and Noah are definitely not known for the ability to keep secrets.  Me and my bright ideas!  Clearly November is the ideal time of the year to start that kind of project.  It's not even finished yet, as January has been really packed too, but I thought I'd post about it as an incentive to keep going.

Initially I had four different shades of pink, and also a silvery grey.  I knew I wanted to use hexagons, without too much open space so as to keep it as warm as I could, and found this hexagon pattern.  I considered making each hexagon a different shade, but I liked the star shape in the middle, and thought it would just get lost unless it was picked out in some way, so decided to use the different pinks for the stars, and do the last two rounds of every hexagon in the same grey.  

I started by making the stars, as that seemed the easiest way to keep the project fairly small and portable in the early stages, and also give me time to try and finding a method of joining the hex's together.  The hex blanket I made Smiler taught me the importance of planning the joining method you're going to use, as I hadn't with that and really regretted it!  By fairly random googling I found moonstitches tutorial for using the last round to join the hex's, so the game was afoot ~ pink stars in a silver grey sky.

Then Petal told me she didn't really like pink anymore, she prefered purple.  Cue deep breath and somewhat forlorn glance at pile of pink stars.  Uh oh.  Rather than frogging it all and starting over with purple, I grabbed a few purple/lilac shades from Get Knitted (which fortunately can be a stop off after dropping Smiler at school or before picking him up), and kept on going.

It's definitely still growing (maybe 120 hexs measuring 5½ inches across), and I prefer the wider mix of colours, although I've given up on the idea of it belonging to Petal as since it's been gradually maturing in the living room (keeping it secret seemed pointless after christmas had come and gone) it has been commandeered by each of us, and it really is very snuggly!  This isn't the best photo but it does show the shapes off ~ unfortunately for it to be really useful it needs to be probably two or three times the size it is now!  Having put the time in that I have so far I wouldn't want to wish it was bigger every time I looked at it or tucked it in around a poorly child on the sofa, so there's a few more hours of hexagons in my future . . .

Thursday, 24 January 2013

perspectives on routes into disability


I'm sure many of you will have read 'the thing about Holland' as it seems to be known, a lovely piece of writing about how it can feel when you don't quite get what you signed up for.  While I applaud the overall positive message, I've found that I seem to retread some of the emotional upheaval every so often ~ you know, the whole 'why did this have to happen' thing.  Something else I've thought about over the years (in that fatalistic way we humans tend to) are the different introductions into the world of disability, and whether the path you start off on has any influence on the rest of your journey.

* * * * *

Mr Manley and I found out Smiler was going to be different shortly after he was born, and given a definitive genetic diagnosis, along with an extremely pessimistic prognosis, very early on.  As it turns out, Smiler has far surpassed those early expectations ~ are they still called expectations if they're things that they say won't happen? ~ anti~spectations? non~expectations?  Well, anyway, that great long list of things he would never be able to do included smiling, recognising people, walking and talking ~ fortunately he likes a challenge, and obviously the scientists in those early days were not as omniscient as they appeared to be (or wished they could be perhaps).

* * * * *

As soon as we were parents, we were parents of a child with disabilities, and were recognised as such ~ we didn't have to argue with doctors and other professionals about whether or not there was anything wrong.  It must be soul~destroying, having to fight to get people to see the problems that you can see within your child, pointing out negative behaviours for them, maybe keeping a diary of day to day life . . . dear diary, today I had to get milk from the shop.  I spent forty minutes explaining to Fred, and it took an hour to walk there since we had to stop at every manhole cover so Fred could look at the writing.  Once we got to the front door of the shop, the automatic doors weren't working, so Fred refused to go in.  I tried to tell him it was okay, but he got upset and started screaming and tried to hit me.  An elderly lady walked past and went into the shop shaking her head and tutting at me, and she must have said something when she got in because the security guard came out and told me he had called the police, so I should let go of Fred's hands and go inside with him.  Fred pulled away and ran into the road in front of a car, but as usual the driver was shaken and Fred hadn't even noticed ~ he was looking at the labels on the recycling bins.  When the police got there they said they were going to phone social services, and I think they thought I was bluffing when I told them to go ahead, because social services  weren't interested in helping.  The police drove Fred and I home, but I couldn't have a cup of tea because we didn't have any milk . . .  I don't have any qualifications about that kind of thing, but surely common sense tells us that having to repeatedly list our child's 'negative attributes' must have an impact on the relationship you have with that child ~ do professionals recognise that do you think?

* * * * *

Another route into this disability maze is through some manner of acquisition ~ a child who suffers a brain injury during a car accident perhaps, or survives cancer but is different when they come out the other side.   This has happened to someone I know, and for the family, they struggle to manage her behaviour and additional needs every day, alongside a very real (although socially unacknowledged and unacknowledgable) process of grieving for the child they no longer have.

While Mr Manley and I pictured our child as ordinary and run of the mill (while also being wonderful and intelligent and kind and gorgeous of course) for the period of time before he was born, this family had this ordinary run of the mill (wonderful etc etc!) child for several years, and she is now so different they struggle to reconcile this child with the one that became ill.


There are infinite angles on this, even when you restrict yourself to the disabled children/parent perspective ~ you can have an individual who knows prior to the birth that their child is going to live a difficult life, those (like myself) who found out immediately after birth, others who feel something is wrong and (sometimes) struggle for considerable length of time before that is recognised by professionals (medical or educational), and still others who have an 'ordinary' child until . . . just until.

* * * * *

Over time I've come to believe that there is no universally easy way to enter the disability arena, partly because every single one of us, parent or partner or child or sibling or grandparent or friend bring with us the total of our own life experiences.  So much is dependant on elements over which we have no control: the impairment or disability or illness itself; the amount of related experience we have; public perception of the disability.  The only sweeping statement that can really be made is that the first step on this road is entirely unique ~ as entirely unique as each and every individual that takes it.

Monday, 21 January 2013

hi Petal, say cheese!


Petal's birthday is in the summer, so she's one of the youngest in her year at school (year four in UK school speak).  Now eight and a half, she seems to alternate between being sensible, responsible and trustworthy (possibly more so than her older brothers), or else putting on silly voices and insisting she is absolutely unable to do up her shoes by herself (which she's been doing for several years now)!


* * * * *

Being a girl with two older brothers, Petal has a certain place in the pecking order, an image to uphold ... she's in charge.  Pretty much all of the time.  She told me just before Christmas that she prefers purple to pink now, as pink, "well, it's kind of babyish, don't you think"?

* * * * *

She loves anything involving glue or pipe cleaners ~ she's a proper craft addict, and right now is particularly into junk modeling.  I worry slightly that she's gong to end up on one of those 'hoarders', since she really struggles to throw anything out ... or to let us throw anything out ... "but I could use that to make something!"


* * * * *

She's extraordinarily patient with Smiler, often offering to read him a book or dance with him to a favourite song on the radio.  She's picked up the habit Mr Manley and I have of echoing Smiler's speech back to him, filing in the blanks.  He adores her, and it's clear from watching them together that she feels the same.


Petal decided a couple of years ago that her ambitions in life meant she would have to have two part~time jobs, since she couldn't pick between the two.  So her life plan is to work as a teacher, and then (two days a week) drive a train.  She has the schedule worked out and everything ~ I love the lack of cynicism, the utter failure to acknowledge any boundaries of her imaginary future.  She has retained a genuine sense of wonder, a rare thing in an eight year old living in our sarcastic age, where children grow up so quickly!  To be perfectly honest, I could see her teaching ~ maybe primary age children, or else children with special needs.  


So, she's officially (chronologically anyway!) the littlest of the bunch.   If I had one wish for Petal's future, it would be that she manages to hang onto her (up to this point) enduring faith in human nature and learn to temper it with the determination she shows us at times (the most inconvenient of times of course).  My one wish for the people who love Petal ~ myself included ~ is that we develop resistance to her budding manipulative skills!








Saturday, 19 January 2013

... a new friend ...




Found a fantastic gnome tutorial, by another UK mum in fact ~ thank you Monko, for letting me pinch it!  Check it out ~ it explains what to do and why, but without getting overly complicated or technical.  I made a few adjustments ~ made the body shorter and wider, added hands and sleeves, nose and (the idea of) eyes, and lengthened the hat ... a lot!









Friday, 18 January 2013

Smiler vs the unexpected


Smiler had a routine neuro appointment back in May 2009, where his consultant at BCH said that he thought he could see a curve in Smiler's spine ~ a fairly common issue in children with neurological conditions.  So, I did what so many of us do and know that we probably  shouldn't ~ I googled!

Thursday, 17 January 2013

neither snow nor rain nor gloom of night . . .

No matter what the weather is up to, Eli still wants to go out and about, so who are we to argue?!



Look, Eli shiny and clean ~ needless to say, he was not quite as shiny by the time we got back home . . .

* * * * *

The field behind our house was just made an official village green, and they're going to have big rocks at each entrance telling everyone so.  I'm not entirely sure why.  But hey, we think we may have found one of the rocks . . .



Noah in particular was thrilled about the big rock ~ you can just see the enjoyment on his face.

* * * * *



Smiler had a great time ~ I love that he can get such enjoyment out of something as simple as finding a big stick!

* * * * *

Petal, Noah, Mr Manley and I all wore wellies, but unfortunately Smiler doesn't have any, as he has prescription footwear (no, I didn't know that there was such a thing either!).  



We did look up buying him some, but they're a bit out of our price range at around £500.  Just don't tell the orthotist we walked in the mud, okay?  I'm sure they won't notice . . .


Wednesday, 16 January 2013

like fabric for paper (chains)


Part of our family's christmas tradition is to decorate the house, and to actively involve the children in doing this ~ easier said than done!  One thing that we started several years ago was making paper chains.  Even though Smiler, Noah and Petal were too little at the time to cope with the paper, Mr Manley and I sat on the floor surrounded by packets of 'lick and stick' type chains, and got them to stick their tongues out . . . hey presto, automatic licking devices!  As their motor skills developed, we let them make their chains by themselves, and it was lovely to see how differently they approached the task.  Smiler preferred the shiny paper, and would suck (and chew . . . and swallow . . .) the ends of the strips, so needed gentle persuasion to stay on task.  Petal focused on colour combinations, making sure she repeated the order of the first few.  Noah wanted his chain to be the longest and 'the best', so would surreptitiously slide entire stacks of the least plentiful colours or patterns closer to him, and put a cushion or something on top to keep them away from his siblings!
* * * * *



Tuesday, 15 January 2013

needle felting, or, how to poke a hundred holes in your fingers with minimal effort

For Petal for Christmas, I had a bright idea to try something new.  Never tried needle felting before, so picked up some needles, wool and a board thing~y (there's a small chance that may not be an entirely accurate technical term...) at a garden centre and made a hedgehog.  Unfortunately Eli thought it looked kinda tasty, and ate it before I had a chance to get any pictures.  To be fair, it did look as much like a lump of mud as a hedgehog.  Petal then got a new jumper, with an owl on the front, and started going on about how much she likes owls, so there was a change of plan!  I found plenty of images through google, and decided to give it a go.

He took me about four hours, mostly because I was making what I'm sure are rookie mistakes but that's how you learn, as I remember Mrs Langford telling me in 'domestic science' GCSE (did the powers that be really think that sounded better than 'home economics'? They're the same!).


Pretty cute!  I was limited with colours though, as the garden centre only had various shades of brown, so started googling (is that technically a verb these days?  To google: I google, you google, s/he google, we google, you (plural) google, they google.  I googled, I am googling, I will google).  Anyway, I found The Felt Box, and couldn't resist getting a few of their shade packs ~ a great way to get a mix of colours without costing a fortune, and it arrived in a couple of days, and this was right before christmas ~ pretty impressive in my opinion.

* * * * *

So I had an owl for Petal.  But she's eight years old, wears ear muffs when she's cold, doesn't believe in magic but wishes she did ~ clearly what was required was a fairy for christmas . . .

Sunday, 13 January 2013

nearly, but not quite ...

We went on a trip last weekend, to the S S Great Britain ~ well, when I say we went on a trip, what we did was ...

1.  Everyone got up and dressed (usually we're all in dressing gowns until about 10).

2.  Cooked some sausage rolls to take for lunch (too thrifty / careful / stingy / cheap / broke for lunch out).

3.  Sent Petal and Noah to walk Eli up the road and back again (no dogs allowed on the very very old ship).


Saturday, 12 January 2013

spotty dot biscuits


It's taken me a while to post this variation on the easy peasy biscuits,  but I really hope you'll give this a go. It's really straightforward but looks pretty impressive!  I made these for Smiler and Noah to take into school as part of their contribution to Children in Need, and they were (at both schools) among the first things to sell out!  Some of the pics are from the original recipe ~ the important thing you need to remember is that you need to make one batch of vanilla dough AND one batch of the chocolate dough (or make half chocolate and half vanilla, depending on how confident you feel about manipulating the weights of the ingredients!).  Step 2 is in there twice ~ not a mistake (ingredients for each flavour batch).  The dough is easy to handle and recombines well to be re~rolled, so it's great for kids.  Give it a go, and let me know how you get on.