Told I was dim, weird, often absent from school- reasons to create the first EDS JHS schooltoolkit

Today is the anniversary of the first ever school toolkit for Ehlers-Danlos Syndromes, Joint Hypermobility syndromes and symptomatic hypermobilty for primary and secondary school children and young people.



To put it in perspective. Many years ago, at age 16, I had two qualifications and left school early. I was considered dim, slightly weird, and was often ill and absent from school. I meandered for a few years and knew I was different from others but didn't have a name for it. Later, after having children, my eldest, who was ill, was diagnosed age 3 as autistic, with ADHD and dyspraxia. I was left with no support bar 5 speech and language therapy sessions 2 years later. Both children had medical care needs 24 hours a day for several years.


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. 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 and given them leaflets etc. Hopefully this improved information will help many and I wasted no time sending it to them

We kept being excluded even from playgroups. I felt this was unfair to be blamed as a bad mother by educators. I decided I needed to know more to help them teach children like mine to have the same opportunities as other children and help other educators, educate.


Despite my poor academic background, I was lucky to be given a chance to initially study at the Open University online age 39. I aimed to be an educational psychologist, so I had to study psychology first. While bringing up my children, I was a single parent by then, I worked in special needs playgroups, nursery groups, primary and secondary schools as a teaching assistant. This is an excellent grounding for any educator staying in that area or moving on. Money was tight and I often had to go without food myself to feed my children as there was little support or benefits then, and we had lots of specific food issues. Indeed, we had little money and holidays were spent helping others on children camps. I was continually tired and injured.


From theschooltoolkit for EDS and JHS


Following this degree, I realised I wasn't dim and actually won awards but I had no money for the ceremonies or official photographs. To be an Ed.psych you had to be a teacher, so I studied teacher training at Brighton University but quickly had to cram in some GCSEs. During my teaching training, I even suggested that I teach my cohort about autism SEND as a lesson, which was completely novel. I was given an hour!


After my training, I worked in a special epilepsy hospital school and became Head of Department. I applied for the Doctorate in Ed. psych which had changed that year and was pleased to be offered a place but sadly at that time, was far too injured and tired to even think about travelling to London for even a day and with caring responsibilities . Whilst working, I kept studying for my Post Grad. in Child Development and then my Masters ,all online but quite unlike online learning nowadays. It was challenging and isolating in those days, no social media and no time. I continually felt ill, dizzy and had many operations but never believed. Following my years at the school I was delighted to be asked to be autism advisory teacher in the county. The day I was told I had passed my Masters (by then I was 49) was the same day I was told I was losing my job as advisory teacher in a county reshuffle a couple of years later.


I became lead in south east for the leading national autism charity and an autism education Trust, then went national and also became Assistant Headteacher. I worked in all phases of education. I knew something was not covered in our training and advice but didn't know how to explain it. I used to question the multidisciplinary teams and autism training teams why are our pupils (autistic ADHD dyspraxic) were so lacking in muscle tone, brain fogged, irritable (pain) fidgeting, floppy, why can't we let them move more. I am constantly moving as it helps me keep my limbs together or stop the snap, crackle and pop and for sensory feedback. They had no answers or curiosity or they felt it was all covered by those neurodivergent diagnoses.


Sadly, I was not believed to be autistic or be ill, and I had to medically retire after many years of illness and injuries in 2015 as not understood and I thought I must be making it up, so I masked my pain, injuries and illness, day in day out until I couldn't anymore. I had no diagnoses then as not allowed to be ill or autistic as a professional woman. My masking of pain increased as not believed and was told I must be making it up. I finally burnt out physically and became very very ill. I medically retired from my career and only then I received my diagnoses at the age of 53 and 54.


My passion continued as I realised the impact of symptomatic hypermobility on pupils and students, particularly neurodivergent ones. They were not being believed, as I had been in pain, brain fog, dizzy, gastro issues, migraines and so on. My aim continues to help other students not go through what I went through and improve their opportunities for education and employment/ health through with equal opportunities and choice.


This is brilliant! A school toolkit for EDS and Hypermobility. I'll be sharing this with my son's school definitely! #EDS #Hypermobility #EDSer #schools #ChildrensDay2021

I started designing hypermobility training education sessions but did not have the reach or energy to do more. I reached out to many organisations and the national Ehlers-Danlos SupportUK charity about supporting this. They were keen but unable to do so at that point, so I carried on writing/publishing about my thoughts on symptomatic hypermobility and neurodivergence. In early 2019, EDSUK had the go-ahead for a toolkit following new funds but had to delay again. In 2020 there was another start, and we tried getting a team together. Meanwhile, my educational hypermobility blogs and articles had been written and published EdPsyUK , NASEN and other various webinar presentations/conferences were gaining ground.


Publicity for parents carers, teachers to be involved in the toolkit were publicised and had good engagement UK wide. Indeed the vast passion and need was keenly felt. Then Covid came and my team of UK wide educators in various phases and experiences plus parent/carers mainly disappeared as these were very stressful times. I managed to keep on 2 key people and ad hoc advisers during this time. It was stressful as I had just had a major abdominal surgery in lockdown and I voluntarily run SEDSconnective (ex SussexEDS). Lockdown meant I had no support during my recovery and my rather dodgy, hypermobile shoulder dislocated again and tore my muscle fibres in my arm. My other hand had to lift up and hold my left arm to type as I had lost all strength and no outpatient appointments were allowed, but I had to continue writing and leading the content for the school toolkit and the website, which was interesting. My arm was excruciating, as the fibres continually tore each night for months and we were in lockdown yet I had to type out content for the school toolkit.


From the schooltoolkit for EDS and JHS


I did all this voluntarily as I firmly believe children and young people, education staff needed this now. I also strongly believe in joining up and working together to produce what is required and my professional experience and expertise were key. I felt guilty asking teachers to contribute when they were flat out stressed at work too in their half terms, but had to do so. Some of them were ill themselves. I did feel anxiety due to the weight of responsibility of getting this right for pupils, parents/carers and education staff. It led to sleepless nights and I was also trying to keep my charitable group together in challenging times. I feel proud this was achieved and most grateful for those who could stay with me.


EDSUKsupport decided to host it on the internet so it would be safe, easy and free to download. It was aimed for education staff working with these students to have something concretely link to and realise how it affects attainment and attendance. Keenly, parents carers to finally know they not making it up re their children. Of course, most importantly, I thought students would be believed and know they're not hypochondriacs and the stigma which can lead to more trauma. Finally, on May 27th 2021, the EDS JHS schooltookit was publicised. My charitable group SEDSConnective (ex SusssexEDS) also wrote the press release and most of the publicity for the toolkit.


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 dislocation 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

The EDS JHS schooltoolkit is a living resource and will be updated with new publications and research. I am very proud that this was completed under extreme pressure in Covid times. I know from SEDSconnective members, we had terrific feedback and some of it is here with permission. I have spoken about it from USA to Australia now and hope to do much more. I want to thank Kay Julier, Ehlers-Danlos Support UK and their funders for doing this. For HMSACharity support publicising it, my super team Georgia Earl, Kerstin Holm, Katherine White, and Justine-Elizabeth , Dawn Denyer and Michelle Read for all supporting my questions and oversight.


Find it here: www.theschooltoolkit.org

https://www.educatemagazine.com/toolkit/


https://senmagazine.co.uk/content/support-advice/13197/school-toolkit-launches-to-transform-understanding-of-hypermobility-syndromes-in-children/


https://www.sussexeds.com/post/understanding-hypermobility-disorders-syndromes-in-schools


https://edpsy.org.uk/blog/2020/raising-awareness-of-pupils-with-ehlers-danlos-syndromes-hypermobility-spectrum-disorders/


https://www.tes.com/magazine/teaching-learning/general/autism-5-adjustments-needed-your-classroom


Jane Green MA Ed. Chair and founder of SEDSconnective (SussexEDSHSD)




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