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

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.

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.

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.