As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something incredibly close to it, if the Doctors could just stop arguing and make their minds up) and having been a pupil at school with EDS (not that we knew that’s what it was at the time) one of the most frequent questions I both ask myself and see being asked is how to help schools understand Ehlers Danlos Syndrome better.
I think one of the most important things that we forget, whether we’re the student or the parent, is that if our children are in school, they are not the only one in their class. Written down it seems so logical, but caught up in the emotional and physical aspects of EDS it’s very easy to lose that perspective.
Equally, wherever you are in the school system, there will always be more than one person involved in the education of you or your child. More than one person means that there will have to be communication between everyone involved and we have to appreciate sometimes messages don’t travel as well as we’d like – human nature and real life sometimes just get in the way. I hang on to the belief that no teacher, SENCO (or INCO as they’re now called) or other professional would maliciously miscommunicate with their colleagues about a student. However, I totally appreciate (you should see some of the letters about us) that some professionals could up their game significantly in their letter writing and communication skills. Helping schools understand EDS better means that when these gems of inadequacy do appear, they are recognised as such rather than taken as gospel.
Every Child Matters
Whether you’re going into school with an established diagnosis or one in the pipeline, forming a partnership with the school, based on mutual respect, knowledge and having the student as the central focus is incredibly important – and can be incredibly difficult. I can only imagine how difficult it is for the SENCO to manage and communicate the needs of every child in their care to everyone who needs to know – and carry out whatever additional duties their role requires as well. But – Every Child Matters and just because EDS is a condition that isn’t particularly well known, doesn’t mean that those with it should be sidelined, judged or deemed purely an inconvenience.
Ehlers Danlos Syndrome Does Not Have a Fixed Presentation
There are several types of Ehlers Danlos Syndrome with more variations being discovered all the time. One thing for schools to understand is that nobody will EDS will have exactly the same set of symptoms as someone else with the same diagnosis. Siblings will present differently to each other (to a greater or lesser degree) and if their parents have it, they will be different to them. Not only that, but the presentation will change over time (again to a greater or lesser degree) and generally with little or no warning.
Although there are many methods to support people with EDS it cannot be cured. There is no magic fix and children won’t ‘grow out of it’. This isn’t an easy statement to process for anyone with EDS, not matter what age they are.
In many cases, EDS is an ‘invisible’ condition. This is probably one of the toughest emotional aspects for anyone with EDS and it’s really important that schools understand this. People with EDS also have good days and bad days – although predicting which ones will be good and/or bad is nigh on impossible.
What Causes Ehlers Danlos Syndrome
Basically (more technical explanations are available but unless your school contact is a medic too, they’re not going to help much) in people with EDS there is a fault in one of the proteins that makes up our connective tissue and it makes the connective tissue too lax – or bendy. Connective tissue is found throughout the body – it’s essentially what holds us together. Some types of EDS affect some parts of the body more than others but as connective tissue helps forms our skin, our blood vessels, muscles and joints as well as helping transfer the messages that travel from our brain through our bodies, in every type of EDS the connective tissue is involved.
EDS is a genetic condition, often inherited and can be seen more prominently in females. Males do get EDS too – it’s just in females our hormones can make the condition more pronounced. Hormone surges and cycles can create more ‘bad’ EDS days.
Fatigue and Tiredness
I’ve written about fatigue and tiredness before and it is one of the common symptoms that people with EDS relate to. We all get it in different ways though – varying from utter exhaustion where getting out of bed is impossible, to ‘brain fog’ when your body is working so hard at staying upright it feels like you’ve got no mental processing power to tired feet when standing too long and a variety of other symptoms. It’s hard to identify what particular things tire people with EDS out more – some days I can walk 3 miles easily and be ok but half an hour of intense concentration working at a screen befuddles me. Other days the 300 yard school run is horribly painful but I can work at the laptop all day.
Students with EDS often need breaks and physiotherapists and occupational therapists often state that these breaks are required in the school day.
A break for someone with EDS isn’t necessarily sitting still and not working or having a ‘little sit down’ during PE. Often sitting is tiring in itself (think of all the muscles you need to sit upright and imagine them having to work twice as hard to achieve that because all the connective tissue is too lax), as is writing or reading.
Whether it’s resting on a beanbag, having access to the sofa in the library or being able to lie down for a while with the school nurse, allowing these rest periods can make both a positive impact on the educational attainment of the student and their emotional well being.
What’s most important however, is working with the student to find out what suits them. Just because you’ve read this article doesn’t mean that a student with EDS needs a beanbag or a sofa – talk, explain, suggest solutions, find other ideas when those solutions don’t work. It has to be a partnership – and in a condition where things change all the time (be those hormonal changes, a growth spurt, taking on something new, things happening at home or just EDS throwing in another curveball), it has to involve flexibility and understanding.
One of the main things that differentiates Ehlers Danlos Syndrome from ‘just’ Hypermobility is the pain that comes with it. Everyone has different pain tolerances – what I find bearable, you might find utterly debilitating – what a child finds painful may be, in an adult opinion, a complete overreaction (and it may well be!) but it is still painful to them.
In patients with EDS, pain relief is often ineffective – it may work partially or not at all. Sometimes that pain relief will end up in completely the wrong part of the body because it has travelled badly through the connective tissue. Dental anaesthesia is something that really doesn’t work for me – neither do normal ‘first line’ painkillers such as paracetamol. In other people with EDS, these work perfectly – it really does vary. Some painkillers have side effects – such as increased tiredness, lack of appetite and generally feeling down or unwell – which leaves the conundrum of reducing the pain but increasing the side effects or living with the pain. It is often a lose/lose situation and that, at whatever age, is not a good place to be in.
Pain is tiring, it’s demoralising and it is far worse when those around you don’t believe that your pain is real. On the other hand, as a teacher, you have 30 children in your class and have to distinguish, treat fairly and manage those with “Idon’twantodomaths-itis”, “I’vehadanarguementwithmybestfriend-itis” and those who have a shocking case of “Istayeduptoolate-itis” as well as those with genuine medical conditions. There is that fine line between instilling the work ethic of ‘just getting on with it’ and acknowledging that there is a situation that needs careful management – for the physical and emotional well being of the student.
Living with a chronic condition does mean that sometimes you do just have to keep going – and helping the student learn the pacing skills that means they can is a really important job for everyone who supports them – both professionally and at home. However, forcing a child/student to do something that causes them more pain is wrong and can cause unnecessary pain and suffering. (the United Nations recognise that everyone has the right to good pain relief and should not have pain deliberately inflicted on them – whether this is actually happening is a point for another debate)
Finding this balance is very, very difficult. Physiotherapy can help reduce pain but can be painful to do and explaining that to a 5 year old is hard. It’s also very hard and upsetting for parents to have to force the child to do it.
If exercises or other interventions have to be done at school (and it is quite possible they will), it’s important that they are done in a such a way that does not alienate or exclude the student from normal school life. For example, being ‘kept in’ at break time to do exercises with children who are being ‘kept in’ to finish work or as a consequence of ‘making poor choices’ can make it seem to the child that they are being punished – often it is a question of explaining the situation in a positive way to the child (and their peers) to make that timing work, rather than having to find alternative solutions in an already busy day.
The Voice of the Student
If you have a diagnosis of EDS (or similar) chances are there are a load of medical professionals in your life, all of whom have an opinion about you, what you need to do and your care (if you’re lucky they might even agree with each other). If you’re of school age, there’ll be your parents or carers who will also have an opinion about what is best for you. Then there’ll be your teachers, SENCO and support staff in the school environment – and in the middle of this is the student – the person with the diagnosis.
I’ve already said that it needs to be a partnership between the school and the family when you have a child/student with EDS and it’s incredibly important that the student has a voice too. When I was at University, I had an extra time allowance in my exams to take rest breaks and stretch if necessary – just because it was there though didn’t mean I always took that time. I was able to make the decision as to whether I needed to rest or whether I wanted to keep going – and these are part of the pacing skills that we need to learn as we live with complex conditions. Children with EDS (and other conditions) can be empowered to learn these skills and make their own decisions – using language that they understand.
It’s part of the PHSE aspect of their education and the questions that can be asked are equally applicable to a whole class setting of children with mixed abilities and needs, not just children with EDS.
I asked a teacher at my children’s school what she’d like to know about EDS (I gave her the first draft of this post) and her main reply was that she wanted to know what the child/student felt, understood and wanted support with. Her questions for the student included:
- How would you like us to treat you?
- What helps you have a good day?
- How do you see yourself?
- What things in school help you to feel secure? (and explain – if you can!)
It’s the ‘you‘ in each of those questions that’s important. In forming the partnership, it’s not all about how the ‘grown ups’ see the student, it’s about that student, the one with the diagnosis, in the centre of it all – and they must be heard – even if they’re saying things that are not what the parents and professionals want to hear.
As much as parents often want differentiated care and education, in many cases (and I’m thinking especially of my daughter here) the student wants to be as ‘normal’ as possible. They don’t want to sit out and take a break, or use their grip or take their medicines or go to the nurse for extra treatment. They don’t want to be singled out – they want to ‘fit in’.
My daughter will push herself at school to join in with everything at 100% to the point where she staggers home barely able to speak. The options and facilities are there for her to take breaks, take on extra fluids or have what she’s doing adjusted for her (and she totally understands this) – but she would rather stagger home and crash on the sofa than be seen to be ‘not trying hard enough’ or ‘different’. She’s learning what the consequences are by physically experiencing them – and as much as we’d like to protect our children from that pain and fatigue, sometimes real life experiences are the only way we learn.
Ehlers Danlos Support UK have a website packed full of useful information and books that are available to order
Special Needs Jungle has resources for parents and teachers – not only are they bang on topic with current political issues they are full of sensible suggestions and practical support.
Rare Connect not only looks at EDS but has resources for many connective tissue disorders. It’s got a great community and some excellent resources.
Rare Disease Day is coming up on February 28th – their website carries information about Rare Diseases (including EDS) from all over the word
There are a couple of sites in the USA that offer some good information about EDS but they look like they’ve been hacked at the moment – so Google and click at your own risk!
In the UK, your County Local Offer (this is the Hertfordshire one – they should be similar in all counties) should provide a directory of resources available to you locally.
There are also lots of other posts here on this blog – if you look to the side bar you can click on for all EDS related posts. This one about EDS in Primary Schools is often a good start.
There are plenty of EDS related Facebook groups, people who tweet regularly about it and other blogs. I would just remind you that everyone with EDS presents different and what has worked for some people may not work in your situation. Equally, just because someone has had a bad/good experience with a medical, teaching or other professional doesn’t mean the same will happen in your situation.
I’ve already written on Special Needs Jungle about complaining on social media about your care or experiences. As a social media lover, I can see the benefits of using the internet to share information – I just think it needs to be done in a positive way so as not to desensitise those who read it – be they family members, health and education professionals or indeed our friends.