Today May 27th 2022, 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.
My story: Many years ago, at age 16, I had two qualifications and left school early. I was considered dim, slightly weird, often ill and absent from school. At the same time I was often told I was too smart for my own good. 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, dyspraxia and MLD. 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.
My children kept being excluded even from playgroups. I felt this was unfair to be blamed as a bad mother (refrigerator) by educators and I had no support or belief. 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. 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. 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 quickly cramming 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. The first time this had been undertaken but my colleagues were very grateful!
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. I accepted an offer to be autism advisory teacher for the Local Authority. 3 years later and 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.
I became lead in south east for the leading national autism charity and an autism education Trust, then national and 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.
Diagnosis
Sadly, I was not believed to be neurodivergent or physically ill, 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 and I burnt out physcially in 2015. I medically retired from my career and only then I received my diagnoses for hypermobility and autism 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 and quality of life.
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 based on my years of experience in training but I did not have the reach or energy to do more. SEDSConnective had not formed in 2015/6. I reached out to many organisations and the national EDSSupport 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 for the other large charity. Neurodivergence was not so popular so I had to be rather insistent on this with them.
In 2020 there was another start, and we tried getting a team together. Meanwhile, my educational hypermobility blogs and articles and the start of my infographics had been written and published EdPsyUK , NASEN and my other various webinar presentations/conferences were gaining ground due to my knowledge, understanding and practice over the years. I felt it worthwhile and much needed to provide my expertise for free.
Publicity for parents, carers, teachers to be involved in the toolkit were publicised and had good engagement UK wide. Then 2020, Covid came, and my careful 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 as ad hoc advisers during this time. It was very stressful as I had just had a major abdominal surgery in lockdown without care support plus had a rotator cuff and frozen shoulder which made typing extremely painful and I voluntarily run SEDSconnective (ex SussexEDS).
However, deadlines meant I had to continue writing and leading the content for the school toolkit and the help design the actual toolkit website which was a little daunting. I developed resources which have now moved on from my many years of training.
From the schooltoolkit for EDS and JHS
I did this voluntarily as I firmly believed children, young people and education staff needed this now and for future generations. 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 anxiety due to the weight of responsibility of getting this right and expectations of others relying on it. It led to sleepless nights and had no support team with expertise to bounce back on. I was also trying to keep my charitable group together in challenging times. I feel very proud this was achieved and most grateful for those who believed me.
EDSUKsupport decided to host it on an independent website url so it would be safe, easy and free to download. Aimed for education staff working with these students to have something concretely link to and realise how it affects attainment and attendance. Keenly, for parents/carers to finally know they not making it all up and the issues are real. Of course, most importantly, I thought students would be believed and know they're not hypochondriacs and end the stigma which can lead to more trauma. After final overlook from the charities who wanted some changes on the nosology from HSD to JHS after discussion with their medical advisers, it went public on May 27th 2021. 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 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.
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 want to thank Kay Julier, Ehlers-Danlos Support UK and their funders for doing this. For HMSA Charity for their medical overview. My super team Georgia Earl, Kerstin Holm, Katherine White, and Justine-Elizabeth , Dawn Denyer and Michelle Read for all supporting my questions and oversight. I hope to do much more.
Find it here: www.theschooltoolkit.org
Now updated for later work:
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