Monday, 28 April 2014

a walk in the woods {a family photo story}

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We went for a sensory guided walk in the woods, making smelly pots; doing leaf and bark rubbings; and meeting trees.  

Country Kids from Coombe Mill Family Farm Holidays Cornwall

The rest of the day will be in another post, featuring a four day old ring-tailed lemur - if you want to be sure you don't miss it, type your email address in the box near the top of the right side bar, and the post will magically arrive in your inbox when it's published.

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Sunday, 27 April 2014

Saturday, 26 April 2014

do's and don'ts {disability and communication}

I've had a bit of a week of it with Smiler, and the general public have not been helping.  Sometimes having a child with special needs feels a bit like being eight months pregnant - complete strangers feel they are entirely justified to share their personal expertise with you (although, to be fair, they don't tend to grope me at the same time).  There's a post in the works about the advice that I don't need, but here are a few tips to be going on with that I think apply to a number of situations that parent carers face on a depressing frequent basis.

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If my child is having a complete meltdown, screaming and kicking and crying and rolling around on the floor, I get that you might not know what to say.  

Especially if my child is fourteen.  

And I get that your toddler (or child, or teenager) may well stare, entranced by the (relatively) grown up-ish type person behaving like this.  

My personal preference would be for you to concentrate on your own shopping and ignore the spectacle unfolding in aisle nine, but if that seems like an impossible request, perhaps the following suggestions will help.

Yes, you may rise an eyebrow, or even two if you have a particularly low shock threshold.

Yes, you may tell your toddler that this is none of your business, and lead them away with a mental note to return for tinned sweetcorn once the fuss has died down.

Yes, you may look at your (ordinary) fourteen year old and think to yourself 'okay, maybe he's not so bad after all'.

Yes, you may crane your neck to look around the annoyingly tall individual in the way of you seeing what's going on, should you really feel the need to do so.

Yes, you may talk about this situation with your friends and/or your significant other this evening, if this is the most interesting thing you can think of to discuss.

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But you know what you do not get to do?

No, you do not get to walk past me and tut, shaking your head and looking disappointed in my clear complete lack of parenting skills.

No, you do not get to take photos of or video my child - this situation is not your ticket to Youtube fame.

No, you do not get to comment to the person next to you about 'some parents, these days...' while they wisely nod their head in agreement.

No, you do not get to speak to my child, in an attempt to teach him the error of his ways - trust me, if it was that easy, I'd have sorted it by now.

No, you do not get to whip out your phone, call 118 118, and ask for the number for social services (yes, this happened to someone I know)

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Chances are, the next screaming teenager or child being tube fed or baby on oxygen that you spot will not be my child - but they will be someone's.  Someone who is tired of their family being a curiosity, tired of being judged by strangers, tired of explaining.  

For the sake of that somebody and their family, please pause for just a second, and consider your next move.

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If you are that somebody, I'd love to hear what you think - have you been reported to social services recently?

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Friday, 25 April 2014

Word of the Week

So, linking up to Jocelyn for Word of the Week as it is Friday after all, and this weeks word is:

learn·ing   (lûr′nĭng)
1. The act, process, or experience of gaining knowledge or skill.
2. Knowledge or skill gained through schooling or study. See Synonyms at knowledge.
3. Psychology Behavioral modification especially through experience or conditioning

I don't mean school learning, or training for a job.  I don't mean a specific skill, such as learning to drive or learning to play the piano.
I mean reaching an understanding of something within yourself, learning the how and the why you are the person that you are.
Coming from my start point of an abusive childhood, and then looking at where I am now, I'm starting to challenge some of the thought processes that I learnt at a very early age.  Recognising the source of those internal voices is very different to beginning to learn how to deal with them.  Some of these soundbites are lifted directly from remembered conversations, some are my own negative thoughts, voiced by the people I knew in childhood.
It's time to learn a different way to be,
and that learning -
that's going to take a while.
But I can do it.

The Reading Residence

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Tuesday, 22 April 2014

a PE bag for Smiler

At the beginning of the new school year I made Noah and Petal simple drawstring bags to keep their PE kits in - they live on their pegs, and both kids have commented that they like having a bag that isn't the same as everyone else's in the class.

But I didn't make one for Smiler (bad mummy, bad bad!) - he has hydrotherapy weekly, but PE doesn't happen often, so there seemed no point in him having one.  But - he is now going to be going to Exercise Club on Mondays after school which means, of course, he now needs a PE bag!

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Smiler has a thing about moustaches - I blame the In The Night Garden episode where Mr Pontipine's moustache flies off and lands in various places, including on the carousel.  Hysterical.  Apparently.  So, when wondering through one of my favourite online fabric shops - Prints to Polka Dots - I spotted this, and how could I possibly resist?

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Sunday, 20 April 2014

easter eggs and treasure hunting

Although we don't do the religious aspect of easter, we do take advantage of a couple of local egg hunts (both at garden centres for some reason) and enjoy the overall chocolate-y-ness of the season.

  As you can see, Smiler, Noah and Petal all get into the cutting and sticking side, and a couple of years ago I got a huge haul of craft sets from Tesco very very reduced - as in 4p for a pack of pompoms, foam shapes and googly eyes that would have cost £2 immediately before easter - bargain!  To get ready for our annual egg hunt in the garden the kids made rabbit ears, and there was a bit of singing going on too...

When the kids were little we hid plastic eggs around the garden and then let them loose.  In each egg were two or three mini eggs, so although they needed Mr Manley or I to open them up, they then got to eat their bounty - yum...

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When they got a bit bigger we assigned each child a colour, and they could only gather eggs of their colour - this meant we could hide the eggs in places accessible to that child, and everyone got their fair share.

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silent sunday

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Saturday, 19 April 2014


I took this last week, and I love it.

In lots of ways, it's nothing special.  A boy, and a dog.
But look at that boy's face, and his joy.

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Smiler is 12 now - 12½ to be precise, and is starting to grow up.  He understands that Eli likes his ears rubbed, and Eli knows Smiler is a safe bet, and often seeks him out.
Smiler wasn't expected to smile, but he does like to prove the specialists wrong, as you can see.

Over the years I've taken hundreds of photos of Smiler, but often pressing that button just a second or two early, or else a second or two too late.  He's turning his head, or dribbling, or staring into space - as much as I love him, photogenic he is not.  Unless you catch that split second, that instant where he is calm and happy and relaxed, and doesn't know you're pointing a camera at him.

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There are people who look at Smiler and feel pity for him.
There are people who see the things he can't do.
There are people who see the struggles he has faced.
There are people who see how different he is.

But this is my son,
the way that I see him.

Full of joy
Full of life
Full of love

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This post is linked to the weekend portrait photo linky
hosted by the lovely Helen of Actually Mummy...

Expressions - Actually Mummy...

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Friday, 18 April 2014

Word of The Week

It's Friday, so it's time for Word of The Week!  A busy week for lots of us, with kids off school, easter egg hunts, roast dinners and plenty of beautiful sunshine!  So my Word of The Week is:
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sleep   (slēp)
a. A natural periodic state of rest for the mind and body, in which the eyes usually close and consciousness is completely or partially lost, so that there is a decrease in bodily movement and responsiveness to external stimuli. During sleep the brain in humans and other mammals undergoes a characteristic cycle of brain-wave activity that includes intervals of dreaming.
b. A period of this form of rest.
c. A state of inactivity resembling or suggesting sleep; unconsciousness, dormancy, hibernation, or death
(sourced here)

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Whether you're getting enough, or not; whether it is a quickie snatched while your toddler snoozes, or you get hours of it at a time; if it's good, or bad - it matters to all of us.  And so does sleep  ;)

Sleep is something that I have struggled with as long as I can remember.  When I'm low I can sleep for twenty hours a day.  Or else I go the other way and get just a couple of hours in 24.  

So this busy busy week, sleep has been a big deal.  Not just my sleep, the kids too - with the usual routine of school and home and clubs thrown out of the window, everyone is a bit unsettled.  And I'm not sure whether a weekend covered in chocolate is necessarily going to help, but I have my fingers crossed that all the excitement will wear them out, and maybe convince whichever part of my brain is working against me to cooperate - I could really do with a good long stretch ... and some sleep ;)

The Reading Residence

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Thursday, 17 April 2014

sewing simple drawstring bags

I ran out of steam a couple of times when I was working on this and, with typical abstract logic, decided rather than take a break and tidy up the small wool mountain by the side of the sofa, I would instead sew myself a few project bags to split the mountain up into separate hills.

I chose fabric from Fabric Rehab, keeping the costs down by selecting some main prints and matching them up with various colours of spotty cotton.  I figured that by mixing and matching I would end up with several bags which complement one another, without looking identical - I'm hoping this will make it easier to keep track of what's in each one.

I could work out how to make the bag, but not to line it, and rather than spend hours trying to work it out, I turned to Google.  This was the tutorial I choose to use - straightforward, enough photos to follow what's going on, and explanations so you know why you're doing what you're doing when you're doing it.

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Tuesday, 15 April 2014

picnic time! {a family photo story}

So beautiful outside that even I went out to enjoy the sunshine today - okay, yes, I had to go out because that was where the food was.  But it was (and actually still is) very very sunny out there...

Poor Mr Manley is not very well, and Smiler doesn't look that impressed either, but let's just put that down to my photography skills being lacking - looking up from someone's feet is never going to be a flattering angle...

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The snack-y picnic-y food went down well - the breadboard covered in crumbs was actually full of bread and crackers at first, I just didn't get the camera out quick enough to catch it!

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 Note the guinea pig run - Sam chose to hide every time I pointed the camera at him though... He's our one remaining guinea pig, so if anyone has a solo pig at home who would like some company, give me a shout - free to a good (local) home and all that!

I have no idea why there is a cardboard box on a stick.  My guess would be some kind of den, but they won't tell me - apparently it's a secret. 

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Monday, 14 April 2014

professional parents {communication and disability}

As the parent of a severely disabled child I have learnt, over the years, how to get along with the professionals Smiler has brought into our lives.  I was the professional going into peoples homes for several years, and (to a certain extent) I know the system.  I know decisions aren't made overnight, I know how important it is to keep up to date phone numbers on file, and I know that (whether it's fair or not) if you treat the professionals with respect and don't let it get personal then you are more likely to get what you want.

Depending on the needs of your child and the system in the county (or indeed country) that you live, you might end up with stacks of professionals, or very few.  Smiler had, the last time I counted, nine medical consultants (three of who are surgeons) - actually ten consultants (always forget about the urologist!), four therapists, and a social worker.  And because I can't help but expand on that last one, he has a social worker who is with the Disabled Children's Team - it's not because there are any child protection concerns.  The individual personnel have changed occasionally over the years, with one of the longest lasting being the social worker (who I won't name here as I haven't asked permission), who we've had for five years.  Doesn't sound like long, but plenty of reviews and phonecalls and emails traded over those years meant it was a comfortable partnership - he knew I wouldn't leave a message saying it was urgent that I speak to him unless it really was, and I knew that he'd fight in our corner for anything he genuinely agreed that we needed, and if he didn't agree then he'd tell us that upfront (not that this ever happened).

Friday, 11 April 2014

Word of the Week

Hosted as always by Jocelyn of The Reading Residence, the Word of the Week Linky is an opportunity to reflect on the last seven days and sum your week up in a single word.  For me, this week was dominated with trying to finish up a stack of various different types of projects, and having to manipulate myself to make this happen (and I don't mean in a dirty way!), so my Word of the Week is


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dead·line   (dĕd′līn′)
1. A time limit, as for payment of a debt or completion of an assignment.
2. A boundary line in a prison that prisoners can cross only at the risk of being shot.

tr.v. dead·lined, dead·lin·ing, dead·lines
To govern by setting a time limit: "He was never going to be deadlined by a day, or even a month" (New Yorker).
The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2009. Published by Houghton Mifflin Company. All rights reserved.

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     (sourced here)

I'm one of those people who has to have a deadline.  Otherwise, I don't do it.  Whatever it is.  It took a while for me to figure this out - two years of A levels, three years of fulltime uni, two years of part time, then about a year into four years of Open University courses I realised that until I could see that end date written in on the calender I had absolutely no impetus to start the work, never mind finish it.

Even babies (although my timekeeping did improve with practice) - Smiler was three weeks late, Noah was one week late, and Petal was only five days overdue.  All their due dates were determined by scans, so it's not even as though my dates were off!

So, with the children off school my time has been much less my own, and I wanted to make sure the time that I did have was used sensibly.

So I set myself deadlines.

Thursday, 10 April 2014

a blanket finished

It's finished!

Apologies for all the photos, but I wanted to show you the way the colours fall.  As it's worked corner to corner, it's striped diagonally, but because the stripes are made up of squares strung together corner to corner they kind of slot into one another.

Wednesday, 9 April 2014

#TheGallery 181

A Photo I'm Proud Of


Because it looks like a christmas card!  
A lucky shot of an unusually cooperative robin in my garden.

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Sticky Fingers Photo Gallery

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The Great Outdoors : watch the birdie!

While I've been working on this, I've found every season of Bones is on Sky on demand, as is Criminal Minds - oh yes, I'm a sucker for the US drama stuff!  When I have managed to move my eyes from the screen I've been watching the birds visiting our bird feeders - even though the big trees just past the end of the garden are gone, there are still plenty around ...

Monday, 7 April 2014

a comfort blanket with a difference

While I haven't been feeling great recently I've been doing some comfort knitting - well, technically comfort crochet I suppose!  A couple of months back I splurged on some yarn I had been seriously lusting after, and made it into a blanket.  Fab for wrapping yourself up in, whether you're contentedly playing monopoly with the kids on a chilly weekend, or hiding from the world on a bad day.  

Unfortunately, everyone else likes it too.

I know that sounds like a good thing, and it definitely is a bit of an ego boost, but it turns out I'm a greedy non sharer as far as comfort blankets go.  I can always invoke the 'that's my blanket, hand it over right now' rule of mum, but sometimes I just can't deal with the puppy dog eyes I get as they do as I've asked, so ...

I decided it was time to make another.  Same yarn, different shade - take a look ...

Pretty, dontcha think?

I ummed and ahhed for a bit over the pattern, but decided to stuck with the one I used last time.  The colour changes are slow so you get a few of squares of each shade as it graduates to the next.

It isn't finished - to be honest I haven't even got to the halfway mark yet, but I find the repetition soothing so I'm confident I'll get there.  I like that it's something tangible that I've made, something that grows bigger the more time I spend on it.  

Saturday, 5 April 2014

animals of clay {a family activity photo story}

This was one of those activities that could have gone horribly wrong, but somehow everyone kept their cool and had a fab time!

Out past Bristol airport is a walled garden which includes a few artists studios, one of which houses Clayability, run by Bill Moore.  We were taking part in a workshop - the plan was for Smiler, Noah and Petal to make an animal each, but (surprise surprise!) it didn't quite turn out like that!

The views from outside the studio was incredible - so many colours, so much texture - easy to see why studios were built there!  The guy in the picture is Bill - a well established potter who has branched out into teaching, and clearly loves what he does.  The group included several young people with disabilities as well as their siblings, and it's safe to say the noise level in the studio was pretty high, and the attention level (at times!) pretty low, but Bill was not at all phased - brave man!

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Petal in particular loves crafty projects, but had some trouble starting off - got there in the end though.  The first part of the process was to make a hollow ball, to be the main body section of whichever animal they had chosen.  Noah went for a bat; Petal, an owl; and Smiler, a minion.  What can I say - the boy loves the minions...

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