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Working With School When Your Child Has Ehlers-Danlos Syndrome (EDS) – 5 TOP TIPS

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I’ve posted before regarding school.  I knew it was a very emotive issue in our house but I was overwhelmed by the passionate responses from other people.  My children have Charcot Marie Tooth disease (CMT) as well as  Ehlers-Danlos syndrome (EDS) but the ripples were felt far wider in the EDS community, I’m guessing due to the lack of understanding and the invisibility that EDS courts.

When I first thought about writing this I asked myself; What would I do differently regarding my children’s schooling if I had my time again? What would I go back and tell myself if I was given the chance?

My children are entering the secondary phase, just, but if I could go back I already know that I would do things differently.  I am still learning but I’m adapting more quickly to new challenges.  I am not an expert, I’m a mum navigating the system but I also have experience from the other side of the fence so to speak as a teacher and a school governor and have recently completed and passed the IPSEA (Independent Parental Special Education Advice) SEN law course.

I am wiser now than I was 9 years ago and I can say, hand on heart, that this is by far one of the most complex relationships I have ever entered into. I have learnt a great deal about people, myself, my children and most importantly the system.

What do we need to do?

Working with school is two fold.  Firstly we need to help the people working with our children to  ‘see’, to make the invisible visible and to help them to understand what it is like for our children living everyday with Ehlers-Danlos syndrome.  This is hard task in some instances, I have approached this in many ways with my children’s schools, a power point presentation to new staff each September to make it visual, information leaflets, face to face meetings, visits from Physiotherapists and Occupational Therapists to talk about the condition, a guide for schools, a copy of ‘Fragile Links’ magazine on the staffroom coffee table.  I have also found that it needs to be revisited each year with new teachers and support staff.  They need to understand the general symptoms of the condition but also how pain, fatigue, co-ordination problems, sensory issues, brain fog, anxiety, toileting, absences, autonomic dysfunction etc. may affect your child individually and how that may change over time.

Secondly, we need to get the provision right, those things that can be put in place at school to support children and to help to manage the symptoms of EDS.  This may include things such as pacing, movement breaks, supportive seating, a rest area, being alert to handwriting difficulties and fidgeting, adapting PE, reducing the weight of the school bag, having a locker on the ground floor, or keeping children up to date with work if they are absent.  There will be many, many things, specific to your children that can be worked into their day to make their life easier and these things may change over time so flexibility should be built in to the plan. It is all the little things that over the course of a day or a week add up to make a big difference for our children, particularly in terms of pain and fatigue.  So how do we make this work? 

My 5 Top Tips

#1 Speak up

You have to advocate for your child both medically and educationally, this will involve communicating regularly with the people in school.  The first point of contact should always be the class teacher as ‘teachers are responsible and accountable for the progress and development of the pupils in their class, including where pupils access support from teaching assistants or specialist staff.’ (SEN code 6.36) But you will also be talking regularly to other members of staff, the school nurse or the SENCO for example.

You will quickly have to develop what I call the four P’s.  The qualities of persistence, perseverance politeness and patience.  You will have to be persistent, the staff won’t always get things first time.  While we all know that EDS HM is not rare, some types of EDS are rare, it is highly likely that school will not have had experience of this condition before.  It is also relatively invisible, pain and fatigue don’t show and unless a child has a joint braced or bandaged it is hard to ‘see’ which in turn makes it harder to understand.

Aside from the review meetings that you may be having and scheduled parent/ teacher meetings you will need to communicate more often than other parents.  Persevere in your approach, a little chat at the end of the day, a home/ school link book, a blog you’ve been reading that sums up how you are feeling, leaflets printed by an EDS charity surrounding the issue you are dealing with, find what works for you for what you need to say.  A good relationship with your child’s class teacher each year is paramount and will make your life so much easier.

Most of all to get the best from the staff in school be polite, no matter how frustrated you are try not to be defensive, stay calm, focus on what you want to gain from the interaction but be firm and clear when you need to be.  Sometimes this will mean not replying to an email immediately, to take a day to breathe and get perspective.  If you loose your cool you have to remember that your relationship with the staff will last long after this isolated incident, as long as 8 years in some schools.

Most of all be patient, as parents we want things to happen – now – for our children.  Timescales in school can often take a long time especially when co-ordinating with the health services but sometimes it may be appropriate to politely chase things up, it may help to speed up the process.

#2 Know your rights

Knowledge is power, arm yourself with the most up to date information.  I’m not recommending that you quote legislation or go in all guns blazing but you owe it to your child to know what their rights are and what the school is responsible for.   Firstly you can check your school website for their policies regarding SEND/ Health and Medical Needs and Equal Opportunities.  On the schools website you should be able to find a statement regarding SEND and their Equal Opportunities objectives.  My Local Authorities (LA’s) website and guidance has been a great help for me particularly around attendance and long term absence, as was telephoning the school inclusion officer (EWO in some areas) assigned to my school for a chat.

You must read the SEN code of practice, its really quite accessible.

There are some great sources of information out there, use them.  I can personally recommend ‘Contact a Family’ and ‘Independent Parental Special Education Advice – IPSEA’ for advice and guidance. You may also find your local ‘Information, Advice and Support Services Network for SEND – IASS’ (formerly parent partnership) helpful, this is a confidential service local to you and can offer advice or act as your advocate in meetings with school.  Special needs jungle also has guidance which is user friendly and produced in conjunction with the Department for Education (DfE) with great information produced around the SEND reforms and Educational Health Care Plans.

#3 Back it up with medical evidence

The new SEND code states that schools and governing bodies must make provision for the symptoms that a child has not just the diagnosis.  This is important, as everyone with EDS is different, there are six distinct types all with different symptoms, even two children of the same age and type will present completely differently.However, often in school unless there is medical evidence with a name of a condition printed neatly at the top this provision doesn’t always happen.  It’s hard for schools, this isn’t diabetes or asthma that they are familiar with.  Coupled with the fact that it’s relatively invisible makes it harder still.  They may require advice from the health services involved with your children such as Physiotherapy or Occupational Therapy in order to provide the correct provision.  Some schools may want confirmation or advice from a consultant.

As parents we are also battling the debate amongst some medical professionals surrounding EDS.  In our family we have had 4 different labels for the same condition on medical letters for one child.  This is confusing for schools.  In my experience some doctors also seem reluctant to ‘label’ children at all, unless they can prove something exists genetically (which they can’t with EDS hypermobility type) then they don’t want to commit on record what they suspect, even when faced with a positive family history and a long list of symptoms.  I get this to a degree, they don’t want children to ‘become their condition’ but as parents we want them to be able to access the right services and have the correct provision in place to make their lives better.  There is a fine line and without a diagnosis it can make navigating the school system so much harder.  In my opinion it makes it even more important to get that evidence in place.

Schools also have to satisfy the LA’s school inclusion officers (formerly education welfare officers) in terms of attendance.  When the medical evidence is in place this should no longer be an issue.  However getting to that point is a often lengthy process.  Any evidence to support prolonged absences should ideally be provided by a consultant but a GP can make recommendations in the interim so that provision is not delayed.

#4 Involve the child

As all children will present differently with their symptoms, they will all be on a different journey emotionally.  This will depend on their symptoms, pain, fatigue, family, friendship groups and how they choose to deal with things personally.  Be honest with them, children are resilient and worry much more when they are unsure about what is happening.  Talk to them, at their level and appropriate to their age and development.  Ask them what they like, what they don’t like, what is hard in their day, what isn’t, if they have suggestions of things that may work for them in school, after all they are there every day.

I always take a list of my children’s opinions into meetings in their own words so that their voice is heard.  Really importantly, especially as they get older, they need to be involved in how they want to deal with things in relation to their friends and the information they want to share.  The new SEND code has children at the centre of the process as parents we need to make sure that this happens.

#5 Get the paperwork in place 

It’s not our job as parents to ‘do’ the paperwork but as parents we must be part of the process and be fully informed about what is happening in school for our children.

For children with Health and Medical Needs the Children’s and Families Act 2014 places a duty on schools to ‘make arrangements to support children with medical conditions’.  An Individual Healthcare Plan, will specify the level of support required to meet their medical needs. It should also state a date for review.  Schools are required to have regard for the statutory guidance ‘Supporting Children at School with Health and Medical Conditions’. (DfE)  This is really important for our children who may be at greater risk of dislocations, subluxations, sprains, bruising and skin breakdown as well as urinary and gastrointestinal problems or allergies.

Your children may also have support provided in school under SEN support or an Educational Health and Care Plan which should be ‘planned and delivered in a co-ordinated way with the healthcare plan’. SEND code 6.11 When all bases are covered, then everyone is happier, school, parents, children and school inclusion officers and it reduces stress levels.  It is a much more positive situation all round which has got to be better for our children.

It is also appropriate to check that important information is being circulated to the right people in school.  For example, ensure that the staff that work with your child each day know the ‘in case of emergency’ procedures for your child, if they were to dislocate, or to know ‘who is responsible’ for particular jobs each day with your child, for example, applying a brace for high risk activities.

You are the link between health and education, you will have the overall picture for your child and communicate the relevant information between the different services where required, reports, advice, interventions etc. Physiotherapists, Occupational Therapists and Speech and Language Therapists may be involved directly with school to give advice or to advise on specialist equipment but the day to day communication will usually go through you.

It is important to keep copies of everything. Print your emails and file them, keep a note of conversations, reports, minutes of meetings and copies of progress and attainment over time. There are many reasons for this, firstly, you will never remember everything, even if you remember clearly the conversations that you may have had, the exact date may escape you. Secondly, It is important to have a clear paper trail for future, what has been tried, what has worked, what hasn’t and why.  It may also be a good idea to scan important documents in to the computer as pdf’s so that they can’t be lost.


As a teacher my job was important to me, the children I taught were important to me, I wanted the best for them, all of them.  But the next year I had a new class of children to navigate through the curriculum and watch grow and flourish, I moved forwards, some teachers move to other schools, get promotions, retire, eventually I left teaching altogether and had a family.  As a parent you do not move on but travel alongside your child not only being their advocate but helping them to have their own voice, forever.  You need to have a hold on what has gone before and have the overall view of their health and education picture, to help to plan for what needs to come next.  It is why parents need to be such an integral part of the process and why schools and families need to work together.

If you would like to know more then more detailed information surrounding supporting children at school with Health and Medical Conditions, Special Educational Needs and Disability (SEND), Special Educational Need (SEN) Support, Educational Health and Care Plans (EHCP) and the legislation that may apply to your children, this can be found in the post supporting children at school with Ehlers-Danlos syndrome and SEND along with links to useful contacts and legislation.

Useful Posts

Supporting Children at School with Ehlers-Danlos Syndrome and SEND – With links, contacts and legislationDear Teacher (Part 1) An Open Letter to Teachers of Children with Invisible Illness – How to See.Dear teacher (Part 2) An open Letter to Teachers of Children with Invisible Illness – What to Do.

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