Great stories and one huge event
Here’s our personal picks from the past week’s stories. Take a look and add your own
Search Results for: rare disease
SNJ’s favourite stories this week – Add yours too!
Here are links to this week’s stories that we liked enough to share on Twitter brought to you all in one story in case you missed them or you’re not …
Your views needed on supporting children with medical conditions at school
The upcoming Education, Health and Care Plan that will replace SEN statements, is intended to integrate a child or young person’s needs into one statutory document. It is, however, education-led, meaning …
Help for parents worried about their child’s development
It’s always a scary time when you realise your child isn’t developing at the same rate as the children of other parents you know. Sometimes it’s obvious, other times it’s …
The parents working to find a cure for deadly Sanfilippo syndrome
Jonah was born in 2008 to excited parents in New York City. But at his first year check up, his pediatrician noticed his head circumference was large for his age. …
How growing up with disability can lead to a life of compassion
We often wonder at SNJ, as we all must, how our children with chronic illness, rare conditions or additional needs will cope when they are adults. How will their difficulties …
Is This It Mum? Forever?
Have you, as a parent, ever sat down and thought “is this it?” Have you ever sat in despair wondering if it would ever get better? It’s heart breaking and …
Autism Acceptance? It’s so much more than that…
It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t. No one expects to have a child with an ASD/ASC, whatever …
Special Needs Jungle has a new LinkedIn group!
We have exciting news! Special Needs Jungle now has a brand new group on LinkedIn. While there are a couple of other SEN groups there, the Special Needs Jungle group …
Doing your best is all you can do
Today I’m feeling a little sad. Youngest is off school again with joint pains in his legs. We’ve just been for a blood test and he is awaiting an appointment …
The SEN bill’s future is in the hands of.. well, what a welcome surprise!
The last week has been really hectic with my boys going back to school and a huge workload, but I’ve just been prompted by a blog comment to write about just …
Volunteering: The best way to spend your summer
Tania says: We’re heading off for Italy this weekend and because both kids are autistic, we’ve always rented a villa with a pool and taken their Grandma and Nonno along …
Research, articles & opinion – special needs news from this week
An incredibly busy week, so I missed my Wednesday post as I was in Brussels to speak at a EURORDIS workshop on social media for rare disease organisations. I was …
Neurodiversity and Ableism – a young person’s perspective
With Kyle Thapar Kyle Thapar is a young teen who attends a mainstream provision. As he is neurodivergent, Kyle recently chose the topic of neurodiversity and ableism for a presentation …
Government plans for Level 2 courses leave teenage learners with SEND out in the cold
A high proportion of 16–19-year-olds on courses at Level 2 and below have a special need or disability (SEND). So you might expect improving programmes for learners with SEND to …
Why children with SEND in penal detention routinely fail to be given educational needs support
The majority of children who find themselves in penal detention have some form of special educational needs. These needs are routinely mislabelled, unrecognised and unmet. That’s the conclusion of a …
Is NHS England breaking a promise to roll out eye care for disabled children in all special schools?
with Aylee Richmond, National Eye Care Information Officer, SeeAbility A few years ago I woke up with vision loss in one of my eyes. It was frightening, but I was …
Fabricated or Induced Illness (FII) and Perplexing Presentations – New guidance for social work practitioners
with Sally Russell, Trustee, The PDA Society Scientific rigour in medicine is, thankfully, the rule rather than the exception. We want our medicines, procedures, and treatments to be based on …
Schools White Paper: what are the implications for SEND?
The Government’s Schools White Paper (herein SWP for short) has just been published, the day before the long-awaited SEND Green Paper will finally arrive. It’s been emphasised that the two must …
SNJ Report: The casual bias and daily discrimination faced by disabled children and their families from ethnic and marginalised communities
A new SNJ survey has highlighted how racial discrimination and unconscious bias are everyday experiences for disabled children and their families from ethnic and marginalised communities. Parents say they, and …