The School Toolkit for EDS / JHS: the journey behind it and beyond...
- SEDSConnective
- May 25
- 8 min read
Celebrating the anniversary of the School Toolkit for hypermobility
This week celebrates the anniversary of a significant milestone in educational support for children with hypermobility, then termed Ehlers-Danlos Syndromes (EDS and JHS) and symptomatic hypermobility
Behind this vital educational tool lies a deeply personal journey of persistence, advocacy, and unwavering determination to ensure no child faces the challenges I once did.
My Early Years: Misunderstood and Underestimated
At 16, I left school early with just two qualifications. Teachers and others labelled me as "dim" "slightly weird" "hypochondriac" and also a "missing" student (truant). Paradoxically, I was also told I was "too smart for my own good" This contradiction would haunt me for years as I struggled to understand my senses of pain and alienation.
For years, I meandered through life knowing something was different but lacking the words or diagnosis to explain it. It wasn't until I became a parent that the pieces began falling into place. When my eldest child was diagnosed just before age 3 with autism, ADHD, dyspraxia, and moderate learning difficulties, I found myself navigating a healthcare system with minimal support or belief, just five speech and language therapy sessions spread across two years.
We're hopefully on the road to some help now but feel sad it ever got to this stage. Early intervention could possibly have prevented her being this unwell. I had spoken to the school so many times over the years
Both my children required medical support, one for severe allergies like eczema and food sensitivity, some call it ARFID, but they also had extreme pain eating, swallowing and digesting food. Both my children were diagnosed with tree nut anaphylaxis. My eldest even faced exclusion even from playgroups. As educators and others blamed me for being a "bad mother," I felt the weight of stigma and the absence of understanding or support.
I just wanted to stop in and say a thank you to Jane Green and all those involved in www.theSchoolToolkit.org My daughter has been off school since before the Easter holidays with anxiety, undoubtedly related to the autism and hypermobility.
The Turning Point: Education as Empowerment
Determined to help my children and others like them, I decided I needed to understand more about education and child development. Despite my poor academic background, I was fortunate to receive a second chance at age 39 through the Open University's online programs.
My goal was ambitious: to become an educational psychologist. I did not know how to construct a sentence let alone an argument. This meant starting with psychology while raising my children, by then as a single parent, working in special needs settings, and often going without food myself to ensure my children were fed. Money was perpetually tight, and I was constantly exhausted and injured.
The journey was transformative. I discovered I wasn't "dim" at all, I even won academic awards though I couldn't afford the ceremonies or official photographs for a while. To pursue educational psychology, I needed teaching qualifications, so I studied at Brighton University just cramming in missing GCSEs.
During teacher training at Brighton University, I pioneered something unprecedented: I requested an hour to teach my colleagues about autism and special educational needs. It was the first time this had been attempted, and my colleagues were incredibly grateful for the knowledge.
Professional Growth and Growing Awareness
My career progressed rapidly. I became Head of Department at a special epilepsy hospital school, was offered a place on the Doctorate in Educational Psychology program (sadly had to turn down as my health, pain and swelling was immense plus caring duties) so continued working locally and studying online for my Post Graduate qualification in Child Development and later my Masters degree.
I accepted a role as Autism ADHD advisory teacher for the Local Authority, then moved on to become lead for the southeast region of a leading national autism charity working on the social model in mainstream. Eventually, I became Assistant Headteacher, working across all phases of education nationally. I presented yearly on professional conferences in 8 different locations around the country but only as a professional as no diagnosis. I was always curious why so many neurodivergent children were not accessing school. As well as mainstream, I did work on the first online school, forest schools and combined mainstream and special needs schools and fully supported these.
Throughout this journey, my innovations I had created for my eldest to be educated meant I noticed something troubling that wasn't addressed in our training. Our autistic, ADHD, and dyspraxic pupils consistently showed signs of poor muscle tone, allergies, stomach issues, brain fog, irritability that seemed pain related, constant fidgeting and general "floppiness." There was a pattern. When I questioned multidisciplinary teams about why we couldn't allow these children more movement that I instinctively knew helped because I was constantly moving to keep my own limbs stable and prevent joint sounds, I received no answers or curiosity.
The Breaking Point and Breakthrough
By 2015, years of masking my own pain, injuries, and illness had taken their toll, I had tried to get diagnoses before as I had known they in my heart they were connected from around 2009/2010 but simply unable to have support for these as I did not fit the mould. I had convinced myself I was making it all up because no one believed I was neurodivergent or physically ill. I burned out physically and had to take medical retirement from my career.
Only then, at ages 53 and 54, did I finally receive my diagnoses for hypermobility (EDS3) and autism, later ADHD. I was very ill and I feel lucky to still be here. The validation was good but I was immediately discharged. I knew that decades of suffering could have been avoided with earlier recognition and support.
As a headteacher and parent of a teenager with hypermobility and associated comorbid conditions I am extremely aware of the impact that it has on the daily lives of children in education. This is an invisible condition which seriously impacts the day to day lives of those affected. The variation in the severity of symptoms makes it so much harder to deal with in an education setting
Creating Change: The Birth of the School Toolkit
My passion for helping students with symptomatic hypermobility, particularly neurodivergent ones, intensified after my diagnosis. I realised how many children were experiencing the same dismissal of their pain, brain fog, dizziness, gastrointestinal issues, and migraines that I had endured.
I began developing hypermobility training sessions based on my extensive educational experience, but lacked the energy and reach to do more alone. I reached out to various organisations, volunteering my expertise and helped to publish various events and articles in professional publications. While some showed interest the passion I had for neurodivergence was not understood and I continued to advocate using my many years experience. I pushed for more on children and young people with others.
Finally the charity, EDS UK received funding for a toolkit project and asked me to lead the content, though it faced several delays. The inclusion of neurodivergence wasn't initially popular, requiring persistent advocacy on my part. By 2020, I had assembled a team of UK wide educators covering key areas and parent/carers, but COVID-19 and lockdown struck just as we were gaining momentum!
Overcoming Unprecedented Challenges
The pandemic scattered most of our carefully assembled team, leaving me with just two key but also ill advisers. The timing couldn't have been worse. I had just undergone major surgery during lockdown without care support, was dealing with a rotator cuff injury and frozen shoulder that made typing excruciating but also managing parental care responsibilities for my eldest which was hard, while voluntarily running the new group I founded, SEDSConnective (formerly SussexEDSHSD) to join the dots and connections between hypermobility and neurodivergence.
Despite these overwhelming challenges, deadlines meant I had to continue writing and leading the educational content for the school toolkit, creating graphics and even helping design the website. The weight of responsibility was immense, I had no one to bounce back ideas, sleepless nights were common as I worried about getting it right for all the children, families and educators who would depend on this resource.
A Dream Realised
EDS UK Support decided to host the toolkit on an independent website. The goal was multifaceted: to provide education staff with concrete resources linking hypermobility to attainment and attendance issues which had always been my idea and to validate parents and carers that their concerns were real. Most importantly, to help students understand they weren't hypochondriacs and reduce the stigma that often leads to additional trauma.
After final reviews and some adjustments to terminology (changing from HSD to JHS based on medical advisers' recommendations), the toolkit went public on May 27th, 2021. SEDSConnective kindly also advised and handled the press release and most of the publicity efforts.
I’m sat crying reading this. Our 14 year old is really struggling to move around school. She is currently sporting a torn tendon in her foot due to her natural propensity to toe walk working against her orthotic boots with steel plates in the sole. She's up to about 20 knee dislocations in the past 2 years and we've been waiting since April to see a rheumatologist. I too am hypermobile and am in constant pain with my joints.
Gratitude and Looking Forward
I was immensely proud that this project was completed under extreme pressure during COVID-19 and my health issues. The feedback from SEDSConnective members and the broader community had been tremendous.
Special thanks go to Kay Julier, Ehlers-Danlos Support UK and their funders for making this possible, HMSA Charity for their medical oversight and my incredible team: Georgia Earl, Kerstin Holm, Katherine White for sticking with me and their expertise, plus Justine-Elizabeth, Dawn Denyer and Michelle Read for their feedback and SEDSConnective as the foremost charity for hypermobility and neurodivergence supporting this.
Resources and Continued Work
The School Toolkit can be found below, however since then I have published many more educational publications and not least the first Education peer reviewed Paper on hypermobility and neurodivergence. I present in webinars world wide both online and in person including with our Patron, Dr Eccles, at the International Attendance school network conference. My invitations include education, health care think tanks and roundtables. We SEDSConnective are also leading on some events so education is and must be connected to health, care and psychiatry.
These can be found here :
Find it here: www.theschooltoolkit.org
https://www.sedsconnective.org/post/understanding-hypermobility-disorders-syndromes-in-schools (Nasen)
https://edpsy.org.uk/blog/2020/raising-awareness-of-pupils-with-ehlers-danlos-syndromes-hypermobility-spectrum-disorders/ (2nd most read in 2020 only second to Covid by Edupsych.)
Some of the updated later work:
The peer reviewed Paper -
Donaghy, B., Moore, D., & Green, J. (2023). Co-Occurring Physical Health Challenges in Neurodivergent Children and Young People: A Topical Review and Recommendation. Child Care in Practice, 29(1), 3–21. https://doi.org/10.1080/13575279.2022.2149471
New article publishing soon!
A Message of Hope
To every parent feeling unheard, every child struggling with unexplained symptoms, and every educator seeking to better support their students: you are not alone. The challenges are real, the conditions are valid and with proper understanding with policy makers (that it can save money) we can support every child matters to thrive.
Jane Green MBE FCCT MA Ed.
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