The advocate leading a summit to make patient and medical collaboration less ‘rare’

The advocate leading a summit to make patient and medical collaboration less 'rare'

In the most devastating, impossible-to-imagine grief of the death of loved ones – especially your children – it would not be unexpected for a person to turn inwards, away from the rest of the world. You couldn’t blame them for it. … Keep Reading…

What parents wish teachers knew about their special needs child

what parents wish title

Teaching children with autism is one of the biggest worries faced by many teachers and even Special Needs Coordinators (SENCos) as they feel they have not had sufficient training in the condition. It’s recently been announced that in England, the … Keep Reading…

Join the discussions that are connecting the rarest of rare diseases

discussion group

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 87 multilingual communities for different conditions, including those whose disease … Keep Reading…

SEND Inspections: Are they bringing accountability? Your views needed

SEND Inspections: Are they bringing accountability? Your views needed

As you know, we’ve been following the development of the SEND inspections developed jointly by Ofsted and CQC. Barney has even written a helpful guide for parents to help you understand what they’re about. The inspections began in May and … Keep Reading…

The special education conundrum: When parents fund an independent special school place

The special education conundrum: When parents fund an independent special school place

When is a child with special educational needs, just not special enough? It’s when the local authority decides the child’s SEND aren’t severe enough to warrant taking over the placement funding at an independent special school where they’re already thriving. Especially when the parents … Keep Reading…

SEND reforms a botch job? Another report shows families are being failed

SEND reforms a botch job? Another report shows families are being failed

The SEND reforms are failing to meet the needs of autistic children, according to a new report from the National Autistic Society.  The report, written by Catriona Moore, says far too many parents of the 120,000 children on the autism … Keep Reading…

What’s WRONG with her? A rare special needs parent’s dilemma

What's WRONG with her? A rare special needs parent's dilemma

Many of us know what it’s like to be questioned intrusively by complete strangers because of our child’s disability – whether it’s their behaviour or an obvious physical difference that’s “wrong”. Some parents get cross, or upset. Others learn to shrug … Keep Reading…

Showcasing Rare Diseases and Roald Dahl’s 100th birthday!

details of BCH tea party

A shout-out for a couple of events today. One is for parents of children with rare and undiagnosed conditions and one aimed at patient groups and professionals interested in the field. On Saturday 10th September, Birmingham Children’s Hospital is hosting … Keep Reading…

Exam Access Arrangements: what are they and who gets them?

access arrangements

It’s that time again when students anxiously await their exam results. We all hope for good passes all round, but not every student will have achieved the grades they’d hoped for. Some instinctively know that they will not have done … Keep Reading…

Teacher’s Petition to include Speech and Language in teacher training

Time to speak petition

A specialist speech and language teacher in Lincolnshire has launched a petition calling on the government to include Speech, Language and Communication Needs (SLCN) as part of any initial teacher training package. Emma Broddle, who works for the county’s ECLIPS service, says: “I … Keep Reading…

How Yoga can help your special needs child

How Yoga can help your special needs child

We’ve run a couple of posts on SNJ from Lorraine Senior about Reflexology for children with special needs. They were really appreciated by readers so I’m delighted to be able to bring you a similar article about natural therapy, this time Special Yoga. … Keep Reading…

What if my SEND teenager doesn’t get the grades they need for their chosen course?

What if my SEND teenager doesn’t get the grades they need for their chosen course?

I wrote recently about how Son1 made a silver lining out of the clouds created by the grades in his  disappointing AS results a year ago. With this, and upcoming exam results in mind, it’s worth printing this information in a past newsletter … Keep Reading…

Join the world’s first fully-inclusive, fantastically fun, Super Sensory race!

dad and child

Tania’s note: Jo Grace is back to tell us about something you may like to get involved with! Parallel London is the world’s first fully inclusive fun push/run event being held at the Olympic Stadium on the 4th of September … Keep Reading…

Promises, promises: Bercow’s Speech and Language Report: 10 Years On

Promises, promises: Bercow's Speech & Language Review: 10 years on

The children’s communication charity, ICAN and the Royal College of Speech & Language Therapists have announced a review of John Bercow’s Report on services for children and young people with speech, language and communication needs. Another review of Speech & Language Therapy … Keep Reading…

More EHCP research: DfE sends “Experience” survey to families

Image shows mock-up of an EHCP plan cover

From today many parents of children with special educational and young people who have Education, Health and Care Plans will be receiving letters from the Department for Education containing a survey on their EHCP experience. The survey is taking place … Keep Reading…