Having a child with rare disease can mean that you are given very little information about their condition. Parent carers find themselves becoming the expert, rather than the professionals who are …
In a previous post in my series on co-regulation in autism, we looked here at what it is and how important it is to establish co-regulatory roles when working with …
Rosie Collington of Rare Disease UK writes… The UK has a reputation internationally as a leader in rare disease research. Over the past few months at Rare Disease UK, we’ve …
In just 11 astonishing days, the denial of young people’s rights to education, health and care in England has been completely exposed. Evidence of young people being hidden away from …
At Academies Enterprise Trust (AET), where I’m Executive Director for SEND and Inclusion, we’ve been thinking about Social, Emotional and Mental Health Needs (SEMH) in our schools for some time. …
If you’re reading this, then you’ll know that the Government reformed the English SEND system in 2014. Inspectors from Ofsted and the Care Quality Commission (CQC) are checking how well …
Six months ago, Ofsted & the Care Quality Commission began inspecting how well local areas are implementing the September 2014 SEND reforms. At the time of writing, they’ve published 13 …
I always like to try and talk to my son about what he has done at school that day. His normal response is “things and stuff”, unless something very specific …
In October 2016, I attended the Cambridge Rare Disease Network Summit 2016 with Tania. It was very thought-provoking and listening to families’ stories, about gaining a diagnosis for their child …
I have to admit that for a while, R and I joined the ranks of Smug Parents. We didn’t mean to. Most of the time we are running around in …
In my last blogpost, I shared my intention to show footage of other pupils from Bright Futures School. In light of more excellent progress from Lucy, on whom my other …
The Anti Bullying Alliances’ theme this year for anti-bullying week is ‘Power for Good’. What I understand this to mean is that we ALL have the power to help make …
Working Documents (WD) and draft EHC plans are quite similar, although with a draft plan you can negotiate on all of it whereas a WD only (currently) relates to sections …
I don’t need to tell regular readers of this blog that dealing with the symptoms of the condition that affects you or your child is often only half the battle. …
Just over two weeks ago I witnessed an online surge, the likes of which I have rarely seen before. Started by one passionate mum, actor Sally Phillips, her ‘celebrity’ tag …
Tania’s note: Matt Keer, the parent of children who are deaf, is a whizz at figures. He’s written for us before and helped SNJ numerous times. Happily, he’s joining now our team …
One of the things that can cause big conflicts in a relationship, particularly where there is a child with special needs, is differing styles of parenting. We’ve had our own issues …
Elizabeth and I were recently contacted by Jessica Kingsley publishers, asking us to review a new book. When I saw that the subject of the book was Lego and language …
I’ve written on SNJ before about how the online community I help to manage, RareConnect, works to bring together families facing the challenge of living with rare disease. We now have …
Beth McCleverty is the columnist today from Genetic Alliance UK Data, from many angles, has been somewhere near the top of the agenda for a while now. Whether the issue …
