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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.
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.
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.
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: -
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):
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.
For all parents, schools must:
Since the Education Act of1994, the law says that a child has special educational needs if he or she has learning difficulties due to medical or health problems, physical disability, emotional and behavioural or other problems and therefore needs help. The help is known as special educational provision. The help could be wide-ranging, for example more individual time from a teacher or assistant, equipment or special arrangements to suit the individual child (for example time out of lessons for a trained adult to do the physiotherapy exercises in school), or time at a specialist unit. One in five children have some sort of learning difficulty at some time in their school careers, most children get over their difficulty while others need ongoing help.
The Code of Practice provides government guidelines that spell out who is responsible for what, if someone suspects a child needs extra help.
The guidelines give information about three different stages of help for your child, and there is considerable importance placed on partnership with parents. There are also clear procedures about what happens if you agree or disagree with the assessment and decisions about your child. Your child's progress should be reviewed regularly with you, and children who require considerable assistance 'school action plus' are given a forma statement of their child's special educational needs (SEN). This is referred to an SEN 'statement', which is issued by the local education authority. The full text of the Code of Practice is available at www.dfes.gov.uk/publications Ask for a copy of a parents guide to the new code on 0845 60 222 (UK only) to order your free copy of the new Code of Practice Guide for Parents). The website www.kidswitharthritis.org will have more details once they have been published.
Also try www.inclusive.co.uk/infosite/codepar.shtml
The input of a Physiotherapist and Occupational Therapist will be especially helpful in defining the difficulties your child has, and the strategies you and the teachers could use to help her. Specify that you would need them to assess your child whether or not your child requires an SEN statement.These professionals in particular can assess your child's needs both in school and at home, and are key allies in coping with childhood arthritis.
The assessments should clearly indicate the nature of your child's individual educational needs and the action and strategy the school will use to meet her needs. The assessments are completed following the Code of Practice, which is a statutory process. It should last eight weeks, and involve different specialists. It is still common for the process to take a lot longer but the more informed and prepared you are, the smoother and quicker the process is likely to be.
If you suspect your child needs extra help of any kind at school go and see the Head teacher and ask if she can be assessed. This is a formal process and one parent wrote this excellent introduction and advice:
Dear parent
At the end of the day, all of us want to get the best education for our children. We've just been through it - treat it like a challenge and you'll come out with a feeling of achievement. But don't expect it to happen over night - it does take time, energy and effort especially on the part of you, the parent. The more involved and informed you are in the whole process, the more confident you can be in your approach. Here are some tips:
There are some problems which most children with arthritis face at some time in school. These are:-
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.
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.