Overcoming the impact of EDS and HSD 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. Students with EDS or HSD may be less able to participate in social activities outside of school, adding to their feeling of isolation. EDS and HSD are largely “invisible” conditions which can make it hard for others to appreciate the extent of the pain and fatigue being experienced. Sometimes an EDS or HSD sufferer can feel as though they 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 often happens as the disorder can flare, they might be using an aid like crutches or splints one day then the next day 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 EDS or HSD 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 the young person 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 electronic communication aids such as Skype or 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.
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 child 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?
“My daughter’s school’s best idea was that she could start after mentor in the mornings so she didn’t miss any lessons, just group time. It was only 20 minutes but meant that we missed some traffic and she got nearly an extra hour in bed every day. It made a big difference. She was also allowed rest breaks during her GCSEs and could leave the exam hall if needed.
I had a meeting once with the education officer due to poor attendance and she was great and said she was in a position to speed up hospital referrals if needed as her condition was impacting on her attendance.
The adjustments made with the school improved her attainment. The whole focus was for school to require as little physical effort as possible so that she had a bit more in reserve to stay healthier. Subjects she had started struggling with in year 11, were turned around and she ended up with good grades.”
Pupils with EDS or HSD 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 fatigue, pain, difficulty sitting still, muscle spasms and difficulty with handwriting. They may not be able to keep up with their peers in the playground and may experience anxiety and/or depression making maintaining friendships. Pupils may 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 particularly if they are also autistic as pupils can be literal and believe their buddies are their friends all the time. The best way to grow friendships is through mutual passion 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 EDS or HSD. 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 then there is a legal duty to ensure the hypermobility pupil has extra support to ensure they can participate in the school trip.
Sometimes parents/carers prefer to go and accompany their child
Often the best approach is for the teacher who knows the symptomatic hypermobile pupil best to be their support.
It will be helpful for all staff who interact with a pupil with EDS or HSD to understand a bit about how their condition affects them and what adjustments have been agreed without the pupil having to repeat this multiple times. This can be done with a pupil profile in the staff room but make sure locum staff are aware of the adjustments needed. The pupil may also want to communicate with their peers about their condition but may not know how. This is particularly the case if they have co-morbidities and find it hard to express what and how their condition affects them. They could be encouraged 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, do certain tasks for the class that enables to move around and at the same times gives them responsibility.
Link to pupil profile and classroom checklist
“The biggest issue has been staff not reading my daughter’s care plan and telling her off for being tired and putting her head on the desk, even being lazy and getting her mum to drop her at the school door etc until I contact the teachers and tell them to read the care plan. Then they are apologetic but they have already embarrassed my daughter in front of the class.”