Overcoming the impact of JHS and EDS on school attendance and taking part in its social aspects
Pupils may have difficulty coming to terms with their diagnosis, they may be understandably envious of peers who are easily able to take part in activities they struggle with themselves. Pupils may feel socially isolated and find it difficult to make and maintain friendships, often feeling misunderstood by peers. Pupils with JHS or EDS may be less able to participate in social activities outside of school, adding to their feeling of isolation. The conditions are largely “invisible” which can make it hard for others to appreciate the extent of the pain and fatigue which may be experienced. Sometimes it might feel as though pupils are not being believed when they say they are in pain or finding things difficult, and this can have a detrimental effect on their self-esteem and overall mental health. This can happen when symptoms flare – they might be using an aid like crutches or splints one day then the next day be seen running around. Facilitating their inclusion in school, including its social activities with reasonable adjustments, is likely to have a positive effect.
A pupil with JHS or EDS may have frequent medical appointments. Their attendance record must not be penalised because of these appointments. Your school’s medical conditions policy should be clear on how these appointments are entered into the register.
If a pupil cannot attend school for prolonged periods due to their condition, work with the family to find ways to keep them in touch with their school work and what is going on at school. This is where blended learning might be of benefit. Consider the use of robots for pupils who are very ill. Companies which make communication robots may be able to help secure funding for the school to make use of them. Accessibility to online learning is now possible for many pupils. Whether this continues is unknown but hopefully will be familiar territory to those who need it.
Some pupils may not be able to cope with a full curriculum and may benefit from a part-time one. Consider that it is still important for a pupil on a part-time curriculum to enjoy their time at school. As well as being in school for their core subjects, can they also be present for some social interaction too, e.g. for a break, an after school club or school trip?
Pupils with JHS or EDS may present as being distracted, fidgety and uncooperative in class; this is not something they are doing to be disruptive. It could be caused by a number of factors including tiredness in the body and brain, pain, sitting still or in an expected position, muscle spasms and difficulty with handwriting. Movement is very useful to re-engage body brain senses particularly if there are proprioception differences.
Pupils might not be able to keep up with their peers in the playground and may experience anxiety making or maintaining friendships. They might need extra emotional support and, with younger children, it may be a good idea to try pairing them up with a buddy through friendship groups, or guided play sessions. If buddy friendships are used, please ensure that all voices are heard as pupils can be literal and believe their buddies are their friends all the time. The best way to grow any friendships is through mutual passions and interests.
It is important for all pupils to have the same opportunities to join in the social environment at schools as others. Those with long-term health conditions can become increasingly socially isolated if their symptoms make it difficult for them to do the same things as their peers.
A risk assessment approach is recommended for school trips to facilitate the involvement of pupils with symptomatic hypermobility. This allows for various scenarios to be planned for. If a young person is following a reduced timetable, consider if they can attend half of a school trip rather than all of it.
If they have an EHCP, there is a legal duty to ensure the pupil has extra support to ensure they can participate in the school trip. Sometimes parents/carers prefer to go and accompany their child but that is an elective option. Often the best approach is for the teacher who knows the pupil best to be their support.
It will be helpful for all staff who interact with a pupil with JHS or EDS to understand a bit about how the pupil’s condition affects them and what adjustments have been agreed without the pupil having to repeat this multiple times. This can be done with a short, simple pupil profile in the staff room but make sure locum staff are aware of the adjustments needed too.
The pupil may also want to communicate with their peers about their condition but may not know how. They may find it hard to express what and how their condition affects them. Some might relish the opportunity to do a presentation to the class or could be guided to another way to communicate. You could also give the pupil a task which could help them, for example one that enables them to move around and at the same time gives them responsibility (e.g. handing out books/equipment).