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I co-wrote co-occuring Physical Health Challenges in Neurodivergent CYP and this is why...

by Jane Green MBE MA Ed. Chair and Founder of SEDSConnective

As a child, my education was poor. I moved internationally seven times before age ten. Consequently, I missed key stages in numeracy and literacy.

In secondary school, I struggled academically, and was described as a 'hypochondriac', often ill and absent.

I thought everyone experienced my pain.

With my children, it became clear they were neurodivergent.

One with learning disabilities, and all with their own struggles.

I resolved to ensure they had the right to the same opportunities as other children in school, deciding to aid their teacher in this.

It went so well. Teachers would ask me to help other children.

Shortly afterwards, I started a children's club.

Then, I was a single mum in my forties, studying psychology online in university. It was hard. I had no idea how to write a sentence - just a sickness note.

There was no mentorship or online support like there is today.

I became a night owl as my eldest rarely slept, so whilst they watched TV, I studied.

I obtained adegree becoming an Early Years Special Needs Teaching Assistant Supervisor for a special needs group, then a Secondary Teaching Assistant.

I then completed a PGCE in Religious Education, alongside theologians.

They found it challenging to reach the right level for year seven, whereas I, completely new to religious education, found it fascinating.

I often re-enacted stories with classes to the enjoyment of all, including even the curious Headteacher.

My qualifying year consisted of working in a special epilepsy and autism school hospital, advancing to Head of Department and staying on another year.

I applied for an Educational Psychology Doctorate, but was too ill to travel and look after my children.

Unsure if there was any support, I struggled with injuries and illnesses during this time. Continuing my studies in Child Development (Advanced Post-graduate Diploma) I thereafter completed a Master's in Management and Leadership.

Subsequently, I was promoted to Local Authority County Social Communication Advisory Teacher, then Autism Education Lead for a major charity.

Sadly, I was suffering from many illnesses and injuries, with no personal support.

As a result, I medically retired.

After all of this, I received two diagnoses; EDS and autism, and was instantly discharged without treatment or support!

Becoming very ill, I wondered if I were dying.

This was a terrifying thought.

How could I stop this happening to others?

I started the voluntary community group named SEDSConnective in 2018.

Initiating a group in Sussex, England I began my mission.

I wrote articles and blogs, and organised airport experience days for the neurodivergent, ill and disabled and their unseen carers.

There was no training in schools regarding hypermobility, so I set about crafting its design.

EDSUK, which is a charity also, funded to host the first ever EDS and JHS school toolkit in 2019.

I was delighted to have my idea funded, and I spearheaded the content.

In 2020 I was unwell and underwent several major operations.

I experienced considerable pain from a severe shoulder injury, and received no outpatient support as it was one of many lockdowns.

But I persevered to contribute to the toolkit.

By this time SEDSConnective had formed into the first voluntary, neurodivergent EDS HSD charity in Sussex but with global reach.

We originally had the terms EDS Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders (HSD).

But with diligent advice from medical advisors & the charities, we changed such terminology to EDS & JHS (Joint Hypermobility Syndromes) - as age-appropriate for the condition.

When it was published (this week two years ago), it was game changing.

I was so proud to complete this, and the feedback was amazing.

People needed this toolkit, not just wanted it, and SEDSConnective helped promote it.

Six months post release, it was downloaded some 18,000 times.

This is great. Like reading my own story. How many lives could be improved by bi-directional screening for Neurodivergence and EDS ...especially as ND is overlooked in girls and worsening of EDS often precipitated at ‘tween’ age "

Neurodivergence is key.

Our Connective tissue is key.

We know that social, emotional and mental health supports and adjustments in school are used, but attainment and attendance challenges are, in fact, increasing, not decreasing.

We strongly feel at SEDSConnective that this is due to the physical health co-occurrences particularly affecting neurodivergent people, due to the evidenced based research.

In fact, most of this is so groundbreaking and we are delighted that SEDSConnective is leading this as a charity with the emerging evidence.

It is key, and after centuries of being told we are just 'too frail' or 'complex', we are finally being believed and keenly doing it for ourselves.

Loved this, thank you."

"Sadness and anger are examples of emotional displays for symptoms and subsequent symptomatic distress (Ruscheweyh et al., 2011). For example, when a CYP joints hurt, they may feel sad, frown or cry and as this pain turns to fatigue they may feel angry”

The Paper took a while to be published and we based it using the previous published toolkit and other research publications.

On this topic SEDSConnective Patron, Dr Eccles , and I presented at the world international school attendance conference last Autumn.

For centuries, particularly girls & women have been ignored, diagnostically overshadowed in neurodivergence and health.

There is a difference in our connective tissues that particularly affects neurodivergent people and perhaps this is why so many autistic (plus) people not only die from every cause ever studied, but are often most disabled and chronically ill - yet dismissed, diagnostically overshadowed or plainly disbelieved.

We know we are breaking ground and making waves.

We hope it will be tidal.

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