Tilly’s “tried on” lots of diagnoses, but none fit her mystery ultra-rare condition
Happy Undiagnosed Children’s Day! Did you know that around 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare …
Category: Columnists
Act now to protect the NHS funding of rare disease medicines like Ava’s
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 …
Co-regulation in Autism: synchronising emotions, intentions and thoughts
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 …
Rare disease research is vital to patients. Now let’s use it to improve services.
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 …
Our children, “managed” out of mainstream schools and denied support
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 …
Putting Social, Emotional and Mental Health at the top of our schools’ agenda
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. …
Ofsted Local Area SEND Inspectors: The good, the bad & the ugly
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 …
Ofsted/CQC SEND Inspections and Parents: More Than A Feeling?
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 …
Tips for talking to children with language difficulties about their school day
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 …
Supporting a child with Addison’s Disease at school
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 …
Removing the barriers to bedtime for children with disabilities
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 …
What autistic schoolgirl Lucy, did next: An explosion in development
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 …
Tips to help a bullied child: Anti-Bullying Week
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 …
Draft Plans and Working Documents in an EHCP
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 …
The high costs of living with a disability, especially if it’s rare
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. …
A World Without Down’s Syndrome? Where do we go from here?
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 …
Not co-production: Was your child’s Education, Health and Care plan outsourced?
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 …
Top tips for keeping your cool when parenting styles conflict
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 …
Review: Building Language Using Lego Bricks
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 …
Join the discussions that are connecting the rarest of rare diseases
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 …