HELPING THE CHILD WITH EPILEPSY
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All parents are anxious about their children. It is perhaps inevitable that if you have a child with epilepsy you will be especially anxious and concerned. There is a risk that, probably without realizing it, you may become so over-concerned about them and so protective that you hamper their social development, restrict their personality, and isolate them from other children. Epilepsy in itself is not a bar to happiness. But the child with no friends will certainly not be happy.No child likes to feel different. Perhaps the greatest danger of childhood epilepsy is that it will permanently lower the child’s self-esteem, by making them feel they are in some way handicapped or less of a complete person.How your child feels about having epilepsy will depend very much on how you react. All children need to feel valued and feel good about themselves, because the way they see themselves colours their actions and behaviour. Children who have a positive view of themselves tend to do better in school, to have more friends, and to have a sense of competence about their own lives — a belief that they are at least to some extent in control of what happens to them.It is quite easy for children who have epilepsy to grow up without this positive view of themselves. Children tend to adopt their parents’ view of them, and children who have epilepsy will see themselves through their parents’ eyes, and adopt their parents’ views about the epilepsy.TALKING ABOUT EPILEPSYIn many families, epilepsy is something that is just not talked about. One study has shown that in only half of the families where a child had epilepsy were brothers and sisters told of the diagnosis. Even the child themselves may not be told. Obviously a child has to be told something, simply because they have to be given some reason to co-operate in the treatment they have to undergo. But often they are given information only in the vaguest of terms. Sometimes parents will say that they think the child knows he or she has epilepsy, even though it is not talked about. Sometimes even when the child asks the parents directly, he or she gets an evasive answer, because the parents feel they cannot speak openly and frankly about it.If parents are clearly unwilling to talk about the epilepsy, the danger is that they will convey the impression that it is ‘bad’, and their child will come to see it as something to be ashamed of, which has to be concealed. Unfortunately many parents clearly do contrive to convey this attitude. A conspiracy of silence is a bad start for anyone who has to live with the condition.Children’s fears about epilepsyThis conspiracy of silence means that the children involved can not talk to anyone about their epilepsy. If they have questions, these will not be answered, and also if they do have anxieties, they can not be reassured.What most usually concerns them is the cause of their seizures, and the effects seizures may have. They worry about having seizures in the future, and about the way that epilepsy may restrict their activities and their lives.Sometimes children are frightened to go to sleep in case they have a seizure. They may ask, ‘Why me? What did I do to deserve seizures?’ Some feel guilty because they know their parents are worried. Some have fears of being mentally ill.A major worry is about being teased at school, or by their brothers or sisters. Some children say they feel different from their peers and worry about a seizure occurring when with friends. If this does happen they are especially likely to be fearful about going to school.How to tell a child they have epilepsyFirst find out as much as you can from your doctor about the kind of epilepsy that your child has, and its likely outcome.When you tell the child they have epilepsy, do not make it seem a major disaster, or even a drama. Be straightforward and matter of fact. Give it a name: epilepsy. Do not resort to calling it ‘funny turns’ or worse still, not naming it at all. This is very confusing for a child. Stress that epilepsy is not really an illness because between seizures the child is perfectly well. And point out that they have to take medicine every day, not because they are ill, but to help them stay well.Be guided by your child and let them ask the questions. Children may not be able to take in too much information to begin with. At first, simple reassurance may be all that is needed. If the child is young it will probably be enough just to tell them they have epilepsy, reassure them that it is no big deal, and explain that they need to take medicine to stop the attacks.An older child will probably want more information, so you should try to be as well informed as possible so that you can answer their questions. Encourage them to ask questions, and if you do not know the answers, be honest and make a note to ask your doctor at the next appointment.If you feel anxious about talking to your child, it might help you to contact the British Epilepsy Association, or your local Epilepsy Support Group, and ask if there is a counsellor in your area who could be with you when you tell your child and help answer any questions. If this is someone who has epilepsy themselves, so much the better.Telling other peopleGrandparents and other relatives, friends and neighbours, the child’s own teachers and friends, indeed anyone who comes into close contact with your child or looks after them may also need to be told. When you explain to other people about your child’s epilepsy, what kind of reaction can you expect? Usually you will receive sympathy and support. When you do meet a more doubtful reaction it is more often due to ignorance and fear than outright prejudice. Talking to someone who knows rather more than they do may be enough to dispel it. Some parents have found that older people (even grandparents) are more ignorant, and therefore more likely to react in this way than people of their own generation.DO NOT LET EPILEPSY TAKE OVERThe best thing you can do for your child is to treat them as normally as possible and make sure they lead as normal a life as they can. Encourage them to play with other children and never feel you must keep them continually under your eye in case they have a fit. After all, in terms of time, the child’s fits occupy only a tiny part of their life. So try, if you can, to keep your own concern in proportion.Letting epilepsy take too high a profile in the family’s life is almost as bad as ignoring the fact that a child has seizures. Your child’s epilepsy is only one of the many aspects of their individuality. It is certainly not the one they would want to become identified with. If ‘epileptic’ is always the label they feel they are given, they may come to think of their epilepsy as the most significant thing about them, and other people may come to perceive them in this way too. That kind of labelling can take years to live down.Do not assume that if your child is difficult or behaves badly, this is all due to the epilepsy. All children are sometimes aggressive, inattentive, badly behaved, restless or rude. Those few children whose epilepsy is due to brain damage, particularly to lesions in the temporal lobe (especially the left temporal lobe), do seem to be more prone to behaviour disorders. But on the whole, your child’s behaviour will depend on their relationship to you, and your attitude towards their epilepsy. There is no good evidence to suggest that bad behaviour is a characteristic of children with uncomplicated epilepsy. Epilepsy should never be made an excuse for bad behaviour.Try not to give the child too much special treatment or make them the centre of attention. Many parents worry about giving a child with epilepsy the ordinary discipline or sanctions that they would give other children in the family without a second thought, in case they provoke a seizure. But you must avoid training your child to use seizures as a defence or a distraction whenever things get difficult or they are under stress.You are doing your child no favours by letting them use their epilepsy as an excuse if things go wrong. Life can be frustrating and difficult and the child with epilepsy has to get used to the ordinary frustrations of life just like any other child.RISK TAKINGAll child-rearing involves allowing your child to take some risks. All children have to explore and to experiment, to test their limits, to find out what they can or can not do. Children with epilepsy are no exception. If they are to grow and develop successfully they need freedom to make at least a certain number of their own mistakes. Of course you have to minimize the physical risks, but it is much better to teach your children to assess risks for themselves. Encourage your child to take sensible precautions and work out his or her own ways of staying safe rather than trying to wrap them in cotton wool so that they never have to face hazards and use their own judgment. You have to learn to strike a balance between protecting them and encouraging them to do any activity that might help their own development.There is no reason why children with epilepsy should not play team games, for example. Swimming is an acceptable risk too, provided a child’s seizures are well controlled and a competent life-saver is on hand. Whether cycling is sensible depends largely on the type of epilepsy the child has; you may feel in any case that it is wisest to allow cycling only off main roads. Though it must depend on the type of epilepsy and the frequency of seizures, there need be no reason why a child with epilepsy should not use a climbing frame, or climb a tree that is not too tall.*67\193\2*