Primary School Children with Ehlers-Danlos Syndrome

EDS affects individuals of all classes, ages and nationalities. It is particularly disheartening to see children struggling with this condition.

by Jenny; Cheetahs In My Shoes & Just Photos By Me

by Jenny“It must be really hard being a SENCo (Special Educational Needs Coordinator) at a Primary School.  On top of your normal teaching and management responsibilities you have the responsibility of overseeing the care of a collection of children who specialize in being as un-straightforward as they possibly can.  Some may come with a condition with a name that you know and/or recognize.  Perhaps you’ve ‘come across one’ in your career or have knowledge from a training course, a friend, an article…something.  And then you get my children with Ehlers Danlos Syndrome – and atypical EDS at that and a blood disorder that doesn’t have a name.  It can’t be easy and I can’t imagine you get up in the morning thinking “wooohooo, I’ll be dealing with x today” (if you do, I salute you).

The thing with EDS is that essentially it doesn’t ‘show’.  If you haven’t got a limb strapped up, in a splint or obviously bending backwards, it’s often not an easy call to spot the child with it.  You wouldn’t notice that their skin is probably a bit (or indeed, very) doughy – like well kneaded bread before it rises.  You may not notice that they hold the pen in a different way, you may not notice their bruises don’t get better very quickly nor do their playground scrapes heal well.  You might just notice that they crash into things and fall over a bit more than the other children in their class, but the younger the child is, the less this will stand out.

You might notice that they can’t keep up as well in PE, that their gross motor skills aren’t quite the same as their peers and that their sense of balance is erring towards the decidedly unbalanced.  You might notice that their fine motors skills aren’t quite there but you couldn’t put your finger on what was wrong.  Their parent might tell you about some odd tummy symptoms or that their child reports pain in joints, despite you not seeing any injuries or excessive use.

But on the other hand you might not.  The thing with EDS is that it pretty much presents differently in every person who has it.  Some people can do amazing ‘double jointed’ partial dislocation of joints tricks; “put their shoulder ‘out’”, “put their ankles behind their necks” – often with absolutely not pain or discomfort at all.  Other things like yawning may partially dislocate their jaw and be excruciatingly painful or just carrying a bag or walking upstairs may be stomach churning.  It doesn’t show though – unless you see an hand hanging off a wrist at an interesting angle and the owner of said wrist either looking very pale or saying “hang on a moment, I’ll just put my wrist back”.

A primary school child may be too young to have a formal EDS diagnosis but if it’s mentioned, there is probably a strong chance that either the parents or medical professionals are just biding their time.  It’s not a condition that, at an early age, can warrant an instant diagnosis.  All children are hypermobile to some extent and as is well documented, all children develop at different times.  The difference between a diagnosis of ‘hypermobility’ and ‘Ehlers Danlos Syndrome Type III’ is a tricky one as EDS is sometimes known as Benign Joint Hypermobility Syndrome.  Benign in that it is not cancerous – not that it doesn’t really do anything.  It can be completely and utterly debilitating both for body and mind.

EDS is a hereditary condition but doesn’t present consistently through generations.  For example my main problems are joint instability, pain management and mental health issues.  My children present with immense fatigue, some joint pain, severe hypermobility and joint instability but only in some joints and gastro esophageal reflux.  How this in time will change I don’t know.  I am aware that there is research going on into the significantly increased chances of children with EDS having mental health issues due to the way that some hormones travel through connective tissue in the body.  Therefore, in the primary school setting, keeping a careful eye over the way that the child is integrated into the school setting, included in activities and how friendship issues are managed could be key to helping that child avoid some of issues that may arise as they move towards puberty and continue into later life.

What you might not see is the file of letters at home that the parents have from numerous hospital appointments and assessments.  You may not see the diary packed with before and after school appointments.  You may not realize that the child is doing extra physiotherapy and occupational therapy and has been doing so for months or years to get them to the place where they are when you first meet them.  You probably won’t see the specialist cutlery at home, the weights tucked away under the bed for exercises or the little adaptations that the child has to make when going up or down the stairs that you don’t have at school.  You won’t see the kitchen cupboards that look more like a pharmacy and you won’t see the parents up at night comforting a child in pain.

EDS patients are well known for their coping strategies.  We find ways to do things.  Some of those things will see us through life with no problems, others need to be corrected – but with gentleness and compassion.  Trying to make your body do something it isn’t used to is not easy.  When the message leaves your brain correctly but gets confused on route to where it’s going that’s frustrating and, if not well managed, demoralizing.

The thing is, the chances are that the child that you see won’t be failing.  They won’t necessarily fall into the bottom slot of your statistics, the demographic that causes most concern to you in terms of welfare.  That child may be taking part in a ‘normal’ school routine.  They probably won’t admit they’re in pain or struggling and their concerns will quite often be completely ‘normal’ for their age.

That’s not to say they don’t need support.  No child should have to fail before they get support (go and read this article by Renata from Just Bring the Chocolate on that very subject) and the question that should be asked is not ‘is this child failing?’ but ‘is this child reaching their full potential?’.  Is there something you as the SENCO could do to make life better, easier, less painful, more inclusive?  They might be able to take part in sports day, unaided but how much pain will they be in afterwards, how will they feel about coming last?  More practically, they may be able to sit their assessments in a ‘normal’ time frame but is pain, fatigue or their coordination difficulties going to mean that they don’t achieve their best?

Resources available for EDS patients and their parents aren’t great.  It’s really hard to write manuals and guidance on a condition that varies so dramatically between patients.  If you have a look on my Links page there are various organizations who can help.  Having a child diagnosed with a rare condition is horrible – having a child without a diagnosis is even harder.  It’s not ‘just’ the child in your care that lives with the condition – it’s their entire family.  Other siblings may also suffer, as may the parents.   Leaving your child in the care of someone else is a daunting prospect, let alone when medical conditions are involved.  Add in the pressures of academic achievement and your role of SENCO becomes even greater.   Even though the condition may not be visible on a daily basis.

I’ve written this because May is Ehlers Danlos Syndrome Awareness Month.   It’s a condition that isn’t well understood so ask questions, ask the parents, ask other professionals, ask the child, encourage honesty, be transparent in what you do and admit that you don’t know…  I can’t give the answers, every child is different but more importantly, every child matters.”

Caregivers, parents, teachers, and Special Ed Coordinators do their part to make the life of EDS children more manageable.

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