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Hints for School
Most children with juvenile arthritis (JA) manage perfectly well in mainstream school. Better treatment means only very few children – those with severe arthritis – need to go to a special school. However, schools do vary in how well they are geared up to help your child. Your hospital team might liaise with the school to help teachers understand your child's illness and needs. This will ideally include assessment and co-ordination by an occupational therapist.
As your child may miss out on lessons through illness or hospital appointments, it is important to inform his or her teacher as soon as a diagnosis has been made. Being included in all school activities, in as normal a way as possible, is essential to promoting and supporting a child’s self-esteem. The school should be understanding about this and provide extra help if needed.
What can schools do to help?
There is a range of ways in which schools can help a child with arthritis. This varies according to the individual child’s needs. A child with mild arthritis may not need extra help in class, but it is still useful for teachers to be informed of the diagnosis. A child with more severe arthritis may need extra support, either temporarily or long-term. This might be the use of a laptop in class, adaptations to tables and chairs, or classroom help from a special needs assistant.
Naturally teachers will want to discuss a child’s individual needs with his or her parents. The child’s physiotherapist or occupational therapist can also offer advice and, in some cases, visit the school to discuss the child’s needs and assess what help can be given. It is also recommended, and makes good sense, that the child be involved in the discussions. Even young children have a view on what they find difficult and how they might be helped. For example, if a child dislikes a particular change or piece of equipment, s/he is unlikely to adapt to or use it. At your request, Arthritis Ireland will liaise with schools to fully inform your child’s teachers and fellow students about living with juvenile arthritis by giving educational talks, and providing schools with information and support.
The most common difficulty for a child with arthritis is getting around. Painful joints can make movement more difficult or slower. The child may need transport to and from school, so as to reserve his or her energies for the classroom. Schools may need to be flexible about a child arriving late or leaving early. If a school trip involves walking, transport may need to be arranged. Letting the child get up and walk around in class can help reduce stiffness. Desks and chairs may need raising or lowering to provide the best seating position. If children find sitting on the floor difficult during assembly or carpet time, they may need to be provided with a chair.
Help or extra time moving between lessons is useful. This is less of an issue in primary school, where schools are generally smaller and lessons often in the same room. However, a ground-floor classroom is helpful. In secondary schools, where lessons are often in different rooms, a pupil may need extra time for changing lessons. Allowing a pupil to leave lessons earlier, perhaps using a card s/he shows to the teacher, is a good idea. This helps them avoid the crush as well as coping with long walks and stairs. It can be helpful to let a friend go with them. Again it is helpful if lessons can be based in ground-floor rooms wherever possible.
Providing a ground-floor locker helps avoid carrying lots of bags around. Allowing a pupil to leave textbooks in a classroom and have two sets of books – for school and home – also reduces the carrying burden. It may be useful to let a pupil work in the library if this is more comfortable. Where there are lifts the pupil should be allowed to use these. Sometimes a grab rail in toilets or a banister on both sides of stairs is recommended. Few children with arthritis today use crutches or wheelchairs, but if these are needed then access needs to be considered.
The child’s occupational therapist can advise on adaptations or equipment, which may be useful.
Painful hand and wrist joints can make fine manipulative tasks difficult. A child may write more slowly than classmates or need breaks to rest the joints. Occasionally, a child may wear a wrist splint or brace to support the wrist while writing. Allowing the child to do oral work, using tapes or allowing them to dictate work, can help. It may be helpful to provide photocopies of any long text, which needs to be copied down. Some children find using a computer keyboard or laptop easier for at least some of the time. The child may need extra time to finish work and to complete exams.
As previously mentioned, s/he may also need extra time or help with buttons, going to the toilet and other everyday activities such as opening lunchboxes. The child’s occupational therapist can recommend special aids, like easy-grip scissors and cutlery, pencil grips and tap turners. Some children may need a special needs assistant to help with tasks like carrying books, taking notes and using equipment, on either a part-time or a full-time basis.
Children with arthritis should join in playtime or breaks, just like their classmates, whenever possible. Exercise is good for arthritis and joining in helps the child avoid feeling different. Sometimes, however, they may find running about or standing around painful. Cold weather can make joint stiffness worse. It may help to allow the child, along with some of his or her friends, to play inside for some or all of break-time.
As previously mentioned, exercise is vital for children with arthritis. They should be encouraged to take part in PE lessons and other sports activities as much as possible. They should generally be able to join in all sporting activities, apart from rough contact sports like rugby. Swimming and cycling are especially good. However, if the child is finding PE difficult s/he should be allowed to do his or her own exercise programme instead. The child’s physiotherapist can advise on PE and exercises. In some cases physiotherapists may come into school to treat a child while the rest of the class has PE.
Arthritis does not in itself affect a child’s capacity for academic achievement. However, missing school through hospital visits or stays may mean a child falls behind. In this case they will need work sent home to help them catch up. If they fall seriously behind they may need extra tuition at home.
Some children may occasionally stay in hospital for tests or treatment. They may miss school for a few days or weeks, possibly on a regular basis. Hospital tutors will make sure they do not fall behind with their schoolwork. Ideally this should be done in liaison with the child’s own school, to ensure continuity of education. If possible teachers should arrange work for the child to take into hospital. For children who have been very ill and in hospital for long periods of time, a discharge planning meeting or case conference may be held. It is very helpful if a member of staff from school can participate in these meetings.
Other children are generally supportive of a child’s particular individual needs when they understand the reasons. Discussing arthritis with the whole class is a good idea. A local physiotherapist or occupational therapist may be willing to come and talk. Any incidents of teasing or bullying should be tackled, as for any other child, immediately.
As with any long-term illness, arthritis can cause emotional difficulties, especially as children grow older. A child may be anxious about the future, worried about hospital appointments, or distressed about falling behind. S/he may resent feeling different or enjoy the extra attention illness can bring. The general approach adopted by professionals treating arthritis in children is to encourage a child to be positive and not see himself or herself as a ‘patient’ all the time. A child may need reassurance and motivation to catch up or join in. A child’s illness can affect the whole family, so schools may need to be aware of the effect on the child’s siblings too.
Moving from primary to secondary school needs careful and early planning. Secondary school children have to cope with more stairs, more pupils, and more moving around between lessons. It is a good idea to talk to schools early – at the end of fifth class or beginning of sixth class – to make sure they are prepared. Arthritis should not affect how well your child does at school. Children with JA do just as well as their classmates in exams and many go on to further education at college or university without any problems.