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There are some problems which most children with arthritis face at some time in school. These are:-
Neck pain and stiffness
can be caused by a number of things.
Difficulty getting off the floor (or sitting on the floor)
Many children with arthritis find it difficult and painful to get off the floor. They also commonly find sitting on the floor for any length of time painful. If they have to sit on the floor, they should be able to lean against a firm object, and sit with their legs stretched out in front. If possible, they benefit most from using a suitable chair both in the class, in assembly and during physical education classes.
Difficulty holding things and writing
Many children with arthritis have considerable pain and inflammation in their wrists and hands and therefore find any task using their hands for any length of time difficult. Some children choose to disrupt the class, and avoid getting on with the set task rather than tell the teacher that it hurts too much, or that they cannot do it. Staff need to be aware of these avoidance techniques and encourage and support children to develop the confidence to overcome their difficulties constructively.
Using fat pens or crayons or lining pens with foam can make the child's grip more comfortable. There are specialist pens available and/or putty that can be moulded by the therapists onto the pens to make them easier to hold. You may need to try several different designs to find the solution for your child.
In the long term, it is important that children learn how to form their own handwriting and so they need to persevere with handwriting when possible. It may become necessary for your child to use a computer. Keyboard skills are today part of all children's education, and children with arthritis can be encouraged to become computer proficient as soon as possible.
The pain that children with arthritis experience may seem to make them physically weaker, slower and less spontaneous. This can trigger ongoing harassment and teasing from other children. Sometimes this is done very subtly including name calling, but sometimes the child is picked on openly and physical harassed.
Children with arthritis daily cope with their disease and treatment and soon become aware that they and their lives are different. In research, children report that this feeling of being different is a big issue and they need considerable support to build up their sense of worth and self-esteem. Enduring harassment from other children at school can have a devastating impact upon them, and is an education issue.
All teaching staff need to be aware of the consequences of dealing with a child in chronic pain and be proactive in setting a supportive approach within the class and wider school community.
A national programme has been launched recently to develop both guidelines and services for adolescents with arthritis. A new information book has been recently published. CHAT 2 is the title and the book can be obtain free of charge from either The Lady Hoare Trust, Arthritis Care or the Children's Chronic Arthritis Association (see chapter Sources of Help for addresses).
The secondary school presents new opportunities and challenges for all children, and children with arthritis, their parents and the school team need to carefully prepare for the young person's transfer to the secondary school. Having an SEN statement already in place is a considerable advantage when talking with the new school about how they could support your child.
Helping the young person to take responsibility for their health and life choices is part of seeing them grow up. When the young person has arthritis and needs practical help to do ordinary thing then the journey to independence can be longer and more complex. In general, parents help their children by giving them small steps towards independence, and in particular by encouraging them to make their own decisions and choices.
Common practical problems include having to carry heavy books to different classes, needing a personal laptop computer to use in different classrooms, walking between different classes, and maintaining daily physiotherapy exercises.
The new Code of Practice recommends that children are to be actively involved in the annual review process. Different schools have different policies in this regard. If you want your child to be actively involved, they may need extra support to do so. Discuss this with the SENCO as soon as possible.