Challenge 1 Complete!

12in12

My legs are aching and my eyes are a bit bruised from wearing my goggles too tight but I’ve done it! I completed the North to South Pier challenge yesterday! 1.6 miles/103 lengths in less than 90 minutes and I managed to achieve it in 81 minutes.

A big thank you to all of you who have donated and supported 12in12 so far. We’re already at £599 at the time of writing this post and I can’t wait for the next 12in12 fundraiser to push this closer to the £12,000 goal. Every single one of your donations is going to have such a positive impact on those benefiting so thank you!

Standby for the first in the 12in12 series, more info on upcoming fundraisers and an exciting event in the pipeline for September!

In the meantime, if you’ve got a spare couple of quid you can put it to good use

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Politicians and Conferences: A review

The Diary of a Not So Ordinary Boy

Yesterday I had a lovely day. I hurried around That London feeling very pleased with myself (apart from the bit when I was squashed into an underground train and there were too many people and my feet were hurting) and generally surprised that I was doing what I was doing and going where I was going and it was actually work. My head has been full of it all day; fractured impressions I can’t quite order into jigsaw pieces. My thoughts are like broken glass, scattered, rather than collected.

It’s been a busy month. I’ve been to meetings, to conferences (well, ‘summits’ – Head Teacher’s Roundtable and WholeSchoolSend), I’ve observed not one, but two education ministers (if you don’t count December, where my young colleague took photos of Justine Greening from a distance and we lobbied Nicky Morgan up close, and I gave her a copy of my book)…

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A survey of Teacher Prejudice?

starlightmckenzie

CABLE CAR RESCUE PRACTICE

This morning I woke up to news that GL Assessment had published a report that stated a large majority of the 810 teachers surveyed, (57 per cent) thought there was a misdiagnosis of SEN, and over three-fifths of teachers (62 per cent) thought those children with genuine need were missing out because resources were being diverted to those who didn’t really need help.

‘As our survey of teachers makes clear, there is a widespread feeling in schools that there is a misdiagnosis of SEN and that parental anxiety, however understandable, doesn’t always help with an objective evaluation. It is not that teachers think that SEN is an inflated problem, rather that some children who deserve support are not receiving it because it has been diverted to others who do not need it. At a time when school budgets are under pressure, this misapplication of resource should not be allowed to stand.’

It is…

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The Hardest Part is the Assumptions.

I am River

SONY DSC

When you are a parent, worrying pretty much comes with the territory. We all do it; it’s just part of the job. When you are the parent of a child with special needs, this worrying intensifies a thousand times over, because everything you’ve taken for granted for your typical child no longer applies. It becomes unsure. I’ve always taken for granted that Skyler will get a good education, make friends, get a job, travel, get married and have a family. Of course nothing is set in stone and it’s not guaranteed, but I think this is what we all envision for our children. But I can’t assume this for River who has Down syndrome, because none of this is certain. Is it possible? Yes, absolutely, and I will always encourage and support him to do whatever he wants in life. Unless that involves him wanting to ride a motorbike. Not…

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The Things down syndrome has brought to our lives, and the things it hasn’t.

I am River

SONY DSCWhen I first started to write this, the plan was to write about 10 positives that Down syndrome has bought to my life and 10 negatives. I wanted to be honest, show both sides of the story and not be quite so ‘everything is rosy’. But I really struggled to come up with 10 negative things, like really struggled. There are the obvious issues that make life harder, like medical issues associated with Ds, society’s perceptions and worries about what will happen to your child after you die. Those are real significant worries for any parent of a child with special needs and I don’t take them lightly. It’s always a worry to me about what would happen if suddenly I wasn’t here anymore, but that’s actually that’s for both my children, not just River.

When I was writing, I found that I had to force negative points into it…

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A Letter of Complaint

The Diary of a Not So Ordinary Boy

Heard

Believe it or not, I am not given to complaining. Not officially, anyway. I think it must have something to do with my Britishness; I don’t like to make a fuss. Either that or it’s because I’m inherently lazy. I don’t like to have to exert myself. Or maybe it’s because, like many disabled people who find that bits of the world they are negotiating are just not accessible, it’s easier to simply turn away and take my money elsewhere.

Or maybe it’s because there is always a little bit of me that wonders if it wasn’t, somehow, my fault. Getting the wrong end of the stick is entirely possible. I’ve always got half my mind occupied on something else; I live so much in the present moment that things like the start and end of school holidays or bills have a tendency to creep up on me. I’ve…

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The Fear of Food

The Diary of a Not So Ordinary Boy

I read a post the other day, a simple, factual piece about the reality of parenting a child with complex needs, and it struck me, again, how much less I would know if it weren’t for my Sam.

I can use a great deal of what I have learned over the last sixteen years together in my professional life. Reading behaviour, the tiny expressions that flit across the face of a child, gives me insight into how they feel without them having to utter a word. I have learned when to press and when to back off because someone has had enough, as well as honed my ability to see the small steps in learning and look for the next.

Some of the things I learned though, the things I wouldn’t have learned if he wasn’t there, are faded. They slip into the recesses of my busy mind, and…

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