Horror stories: Recent SEND research for your summer reading
…Vuelio :-). We certainly don’t want to abandon it, but it’s very hard to keep up with everything, given my Ehlers Danlos syndrome and the other demands we are all…
Search Results for: ehlers danlos
SEND inspections: what do Ofsted and CQC inspectors really think?
There have been a few happenings recently that I have intended to write about but meetings and other commitments, plus the good ol’ Ehlers Danlos, have meant it hasn’t been…
Good news to inspire your SEND parenting in 2018
…social media and PR business to fit in alongside the ever-present impact of Ehlers Danlos syndrome. What would help is you offering to tell your own stories here on SNJ….
Parents’ top tips for summer serendipity with your disabled child
…Did the first one three years ago, doing a second this year – Benedicte Our son has complex Ehlers Danlos syndrome (EDS), is a wheelchair user and has special dietary…
Special needs parenting: Love, determination and fury
…and clinging. But, eventually, they had the same core diagnoses: ADHD and Autism (then as Asperger’s) and, more lately, Ehlers Danlos syndrome (among other individual diagnoses). The big difference is…
The SEND crib sheet: How you can help school help your disabled child
…Ehlers Danlos, like myself, but it wasn’t diagnosed, though its symptoms were already becoming clear. At this point, he was just going through a statutory assessment. Tips to manage my…
Review: Controlling pain with the PainPod
…live with chronic pain from Ehlers Danlos syndrome that affects everything I do and can severely limit my energy and mobility. I rely on very strong painkillers to retain the…
While you’re reviewing “Children in Need”, can you fix SEND too please?
…written about this sooner but my “part-time” EFL TESOL teaching course, on top of Ehlers Danlos syndrome = total exhaustion.* I have to say, I have a new respect for…
Racial discrimination and SEND: Why was I accused of harm?
…Ehlers Danlos syndrome, which causes easy bruising, have been unjustly accused of FII. Some have had their children removed, leaving them to fight through the courts to get them back….
It’s all about the school.
Yesterday, my son was discharged from regular check ups with his nurse practitioner at his specialist clinic, a cause for celebration. She has been a wonderful support to us…
Abigail’s rare childhood disease that she won’t outgrow
…Day: Son2 has Ehlers Danlos Syndrome Read all our articles about rare disease Sign up for SNJ new post alerts Enter your email address to subscribe to this blog and…
Holly’s autism film starring role helped raise her classmates’ awareness
Last week, I said Autism Awareness had graduated from a day to a week. Dear reader, I was wrong. It’s a month. Look, if Ehlers Danlos syndrome, a rare disease…
Rare Disease Day: My son has Retinopathy of Prematurity
…raise awareness to parents just going through a diagnosis. Read our other Rare Disease Day posts: How Dan’s rare disease didn’t stop his mainstream education Son2 has Ehlers Danlos Syndrome…
A personal take on depression: Would you recognise it in your child?
…be part of illness Anxiety and depression are also features of Ehlers Danlos Syndrome, with which both Youngest and I have now been diagnosed, so I was predisposed, in any…
Rare Disease Day: How Dan’s rare disease didn’t stop his mainstream education
…was extra important so as not to become isolated… Read More of Dan’s story on RareConnect Read our second Rare Disease Day post: My son has Ehlers Danlos Syndrome…
Add the power of your voice to #ThisIsMyChild
…other via our blogs, Facebook, Twitter and online communities – for example, I’m a volunteer moderator at RareConnect for Son2 and my Ehlers Danlos Syndrome – it would be good…
Help for parents worried about their child’s development
…my younger son has Ehlers Danlos Syndrome & Postural Orthostatic Tachycardia, as do I. While we’re talking about rare diseases, don’t forget we’re supporting Rare Disease Day, coming up at…
The child inside: Do we need to label disability?
…been shaped by their surroundings and family. They have more in common with you than they do another child with Down’s syndrome, or Cerebral Palsy or Ehlers Danlos syndrome, or…
Protecting education for children with medical conditions and life-saving heart equipment for schools
…rights reserved I get a lot of questions sent to me by parents of children with Ehlers Danlos Syndrome that my son (and I) also have, because this is also…
SEND Commencement Day is finally here. A new era in Special Educational Needs starts today!
…training and lasts two hours. Contact us for more information. Speaking personally, I am entering the second week of physical rehab today. It won’t cure me- Ehlers Danlos Syndrome is…