Over Sharks and Spiky Objects
@SENDexperiences
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Sharing the journey of my children with additional needs and our #SEND experiences #autism #anxiety #sensory #dyspraxia #trauma #mecfs #pots
Joined January 2021
The most dangerous feat ever known - parenting two teenagers with #SEND. Navigating the broken support system is like hurtling through the air over sharks and spiky objects. This account describes my experiences.
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Ok, so sales have been ridiculously low for the past few weeks, with social media throttling our reach and fatigue kicking my butt. So I'm going to practice what I preach and ask for help. Can you give us a boost to help us stay afloat by: placing an order, sharing our posts, or
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‘The education system likes to put children in little boxes and if you don't fit in that box, you get pushed out’ In our special Woman’s Hour episode live from the BBC Radio theatre, 17-year-old Katie shared her experience of navigating the SEND system ⬇️
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Well done Katie, you speak for so many of us. Thank you for putting into words exactly what is wrong with the current eduction system. I hope you find a way to learn that suits you, because you are amazing and deserve to thrive.
‘Fighting every step is so hard' Katie, 17, is autistic and has barely been to school since she was 13. She joined @BBCNuala to discuss her experience as a child navigating England’s Special Educational Needs and Disabilities (SEND) system, and how it has impacted her.
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‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions
theguardian.com
Maeve Boothby O’Neill’s parents tell of desperate efforts to find help and their desire to improve treatment for others
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ME: we need more funding and more research
theguardian.com
Letters: people with myalgic encephalomyelitis and their carers are calling for a reversal of decades of underfunding
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We need to get #MyalgicEncephalomyelitis patients out of "chronic fatigue" services and into the hands of ME specialists who have multidisciplinary expertise that's capable of properly responding to a multi-system disease.
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All-Party Parliamentary Group on ME @CMonaghanSNP Carol Monaghan, who was MP for Glasgow West and Chair of the APPG on ME, has lost her seat in the general election. This means that we will now have to find another MP who is willing to take on this role and re-establish the
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No Steve Baker, you cannot be proud of your party's education sector achievements. You put results first and children second, and their mental health has suffered for it.
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Goodness me. And in 2019, I was fighting Derbyshire County Council for proper provision for my SEND child, a fight that would go on until I beat them at tribunal in 2021. So they were spending on tribunal fees, but not actual SEND provision.
Head-scratching bit of SEND info in a recent HoC debate on Derbyshire County Council, courtesy of @tobyperkinsmp DCC has a SEND provision shortage visible from space. It has a hefty SEND capital grant from the DfE. But DCC has spent barely any of it https://t.co/LSvY2wfEKc
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So, about those stupid Acu Seed ear sticker things. Apparently they now help you cope with toddler tantrums as well as miraculously curing serious biomedical illnesses like ME. They really do help with everything in life! They're magic! All from little stickers on your ear!
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Very good article showing just how hard it is for families with chronically ill children with the current truancy laws. ‘She wants to go to school’: parents of unwell child fear truancy prosecution
theguardian.com
The Beaks are among the families in England and Wales who have faced fines over health-related school absences
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Interesting that this article implies a rise in special educational needs amongst children. I suspect what's happening is that mainstream schools are becoming less inclusive and that's what is driving the increase.
theguardian.com
Gillian Keegan says parents having to ‘fight to get right support’ as unions say provision falls short of what is needed
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"There is a psychological intervention that could improve the lives of people with ME/CFS: an apology and recognition of the harms they have suffered." Well said!! 👏👏👏👏👏
It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell. A massive and shocking story in this week’s column. https://t.co/apoW7uFGJS
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Brilliant article - spot on! ‘He hates failing’: mother describes lack of help for autistic son
theguardian.com
Kirsti Hadley’s son, 12, had been looking forward to a new school but became burnt out and anxious
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Thought for the day: why do parents get fined if their children don't attend regularly but schools don't get fined if they fail to teach children effectively and cause them trauma?
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The absolute fucking cheek of a provision who say they can't meed need a week AFTER the EHCP annual review.
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Think it's time for V to see what life offers them as an adult and explore whether we can sort out some support that is better than children's services and education.
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I'm in tears watching this and in awe of the bravery of the parents speaking up about how their children were failed by health and social welfare systems. The #Mecfs community is behind you, supporting you. We know you speak the truth and how long overdue this is.
Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up
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Brianna was addicted to social media: teens need online protection - today's front page from The Independent 📰 You can download a digital newspaper every morning with a subscription to Independent Premium Subscribe here 👉 https://t.co/hepOhU5vPy
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When secondary school was intolerable for V, having a smart phone connected them to a lifeline of support, acceptance and inclusivity. They found their tribe online. If we're taking away smart phones from teenagers, we sure as hell need to make the real world better for them.
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