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Playing, learning and education - Preschool children with arthritis

Many children who develop arthritis are very young. Parents have to deal with the shock of the illness and treatment, but also how it affects normal things like going to school and making friends. Sometimes the child already attends school when they become ill and so both the family and the school together have to adjust to the new situation. Changing schools is another time when there are particular and predictable anxieties about how the child and school will manage.

From research and from talking to parents we know that school issues arouse parents' anxiety and deep concern because the children's happiness and future can be profoundly affected by their experiences in school. Education is about so much more than just lessons.

Parents want their children to learn and enjoy being at school, and sometimes feel unprepared and ill equipped to explain about the child's arthritis and needs. At the beginning, asking for help is not easy, especially if school staff seem unapproachable.

Parents' Tips

• Ask other parents about their experiences of local nurseries or schools. Judge for yourself which nursery/school seems best for your child.
• Spend some time with key nursery or school staff, get to know them before starting the detailed discussion about your child.
• Explain about the strengths your child has, then how arthritis affects your child.
• Be honest about your worries, and any problems you know your child has.
• Discuss ideas from the nursery/school, from the child and from you.
• Find ways that the school could help in nursery/school time and how you can support their work at home.
• The school and you should have the same focus - the happiness and education of your child.
• If you work at the relationships with the nursery/school then your partnership with them will outlast any misunderstandings that may develop later.

Learning for daily living-dressing, eating, using the toilet

Children under five learn how to use their bodies in a co-ordinated way so that they can develop the skills of daily life. They begin to feed themselves, use cups, learn how to put on simple clothes and how to use the toilet. All these are important skills that build independence and self esteem. When a child develops arthritis, some of these tasks become very difficult, and it is easy for adults to want to help by doing more for the child.

Wherever possible try to find a way for the child to keep their independence. In busy families, when the child is very unwell, it may be entirely understandable to revert to using nappies, or to feeding the child, but this can cause problems later and should be resisted if possible. Lost skills have to be relearnt later when friends the same age have become expert in doing those things. Some children find this very embarrassing because it emphasises that they are different. Children want to fit in, and they can be motivated to keep up with their peers.

It is also more difficult for a child to want to be independent if adults around them do everything for them.

In the long run, it is often better for the child if you find a way for them to keep doing things for themselves.

Parents tips

• Try to contact an Occupational Therapist for specialist advice. Try several departments (rheumatology, paediatrics, community), explain what you need help with. Try contacting Fledglings for lightweight cups and other daily living equipment. (See Chapter 9 'Sources of help').
• If necessary, track down the smallest commode possible! A commode is a chair with a seat under which is a removable toilet pan. Try the local children's hospital or community services, it is really worth finding a child's commode which has flat arm rests. The commode can be put in the child's bedroom at night, or elsewhere during the day so that they do not have to tackle stairs. The tiny commode allows children to sit comfortably and safely while they use the toilet, and they can then use the arm rests to push on to stand up.

Finding the right school

Mainstream Schools: most children with arthritis in the U.K. are now educated in mainstream schools, and those with additional physical, medical or learning needs can be assisted to take a full part in education. The past decade has seen a very strong movement by parents and government to include chronically ill children in mainstream education. There is growing expertise in schools, but despite guidelines, schools differ widely in their expertise to successfully integrate children with serious additional needs.

Special Schools: Special schools are those that cater for children with specialised needs that cannot be met in mainstream schools. In the past, many children with arthritis were well cared for in these schools, but were separated from their local communities.

Hospital Teaching and Home Tuition: Local Education Authorities have different policies for funding tuition in hospitals or at home when the child is too ill to attend school. It can form the legal entitlement to education and may be an avenue to explore if the child is too ill to attend school for a long period.

What you need to explain about arthrits

There are some things to consider about your attitude to schools and staff. Again, people will generally want to help but you will need to communicate clearly what you feel you need, and what you are worried about.

There are a few key things that should be explained: -

• Arthritis will affect your child differently on different days; no-one can predict how she will be tomorrow but staff need to be prepared for a range of symptoms. Staff need to know about how to make the most of the good days as well as what to do when the symptoms get worse.
• For most children with arthritis the biggest problem is getting other people to understand the pain they live with, especially when there may be no obvious clues, or equipment like wheelchairs or walking frames.
• Daily physiotherapy exercises are the key to keeping your child's joints functioning well in the long term, and should be seen as part of the school day. These exercises need to be taught to an adult who will daily supervise the child for approximately 20-40 minutes. It is best if these exercises can be carried out during the school day because that maximises the benefit from them. (see Chapter on Treatments for more detailed advice about exercise routine).
• Parents report that when the child has a disability that is more visible people are more supportive and that when there are no outward signs that the child is in pain people are unsympathetic. Sometimes school pupils and staff need to see your child use their splints and exercises to understand more about her experience of arthritis.

What you need to explain about your child

It will help the staff if you WRITE DOWN the following (keep these important notes in a safe place because they will help you explain the situation to other people):

• Things your child enjoys, responds to or is especially interested in (for example, she loves books, dressing up or messy painting)
• Describe how arthritis affects her, for example, if she sits still she gets very stiff, if she gets cold she gets more achy… (also holding crayons, getting dressed, running outdoors etc)
• Actions that prevent these problems, for example, check she does not sit in a draught or that she keeps moving, does some light exercises when she begins to feel stiff
• What you can do if these problems occur, for example if she gets stiff try getting her to gently move

Children with arthritis often look normal to the onlooker, who will not see the hidden daily effort of the exercises, medicines, splints and hospital visits. In schools, teachers may find it difficult to understand why this child has to miss lessons, why they may be very slow or pale when they return from a demanding physiotherapy session, and why they do not join in fully with robust games at playtime.

Summary of key points

• Usually the children look well. This appearance may mask their discomfort or fatigue. It is really important to help your child tell you (and later tell other adults) about how they are feeling. The children need to learn to be reliable in their reports about how they are feeling. If you always reach for the medicine when they say they hurt they are unlikely to tell you next time. They will exaggerate if you tend to give them what they want (time off school, sweets etc) when they say they feel unwell.
• It is difficult to develop a consistent and honest way that you and the child communicate about how they feel but it is an important tool for living with arthritis. Later they will need to be reliably honest with other adults at secondary school and you cannot be there.
• If the children do not communicate how they feel it is assumed they feel well, and no assistance or support will be offered. Other people cannot be expected to guess how your child feels.