The policy of education authorities is that as many children with epilepsy as possible should go to normal, mainstream schools, and about 60 per cent of adolescents with epilepsy are in regular classrooms attending normal schools. However, learning disabilities are more common amongst teenagers with epilepsy. For those who are most severely disabled a normal school may not be possible, and there are three special schools for children with severe epilepsy, including those with learning disabilities. These schools are run like normal boarding schools. However, because it is the policy of many education authorities not to send children out of the area if they believe the child’s educational needs can be met within it, parents who want to send their child to one of these schools may have difficulty in obtaining the necessary funding.
HELP AVAILABLE
If your child has both learning disabilities and epilepsy, you need help, not only to make sure that your child’s needs are met, but so that you yourself get support, someone to talk to who knows about the strain this can put on a family and will be able to advise you if problems arise.
Your GP will put you in touch with the appropriate team of professionals who will assess your child’s needs and give you specialist support and help at home. Their job is also to liaise with schools, or with a young person’s place of work, look at any problems there and help work out a solution.
The kind of support provided varies from region to region. In some areas, children with disabilities are catered for within the normal child services. In other areas these children may be seen by a specialist Child Development Team, and in others by the Community Learning Disabilities Team. Most teams consist of professionals from both Health and Social Services, which usually ensures that there is co-ordination between the various aspects of care or help that are needed. In general, health professionals are responsible for ensuring that someone’s health needs (both physical and mental) are met. Social service staff are responsible for looking at their housing, financial, employment and social support needs, and in some areas may have responsibility for co-ordinating a package of care between the various agencies. The local education authority is responsible for meeting a child’s educational needs. More often than not, you may well find yourself having to deal with several different professionals or agencies to get all the help that you need.
SPECIAL PROBLEMS
The combination of epilepsy and brain damage may cause special problems. If you have a child with learning disabilities as well as epilepsy, there are several points of which you should be aware.
Someone who has brain damage may respond differently to drugs. The side-effects of drugs may be stronger, and they may be more likely to cause difficult or abnormal behaviour.
After a seizure someone with brain damage may be more profoundly affected than other people. It may take them longer (perhaps a matter of days rather than hours) to get back to normal.
People with learning disabilities sometimes have very severe epilepsy and it is important for them to wear protective headgear to protect them if they fall. This headgear is usually something very like a motorcycle helmet. When a child has to wear protective headgear it is yet another way of being made to feel different from other children. Be sensitive to the child’s feelings; there are some nicely-designed headpieces on the market which may make them feel less conspicuous. One alternative version is available from the David Lewis Centre for Epilepsy which has designed a protective headpiece in the form of a wig with hair attached to a fibreglass protective base. It is both less cumbersome and less conspicuous than the traditional helmet.
Just because a child has learning disabilities it does not mean that their epilepsy should not be properly investigated. Never let anyone tell you that it is ‘not worth’ referring a child for special investigations: EEG, an MRI scan or psychometry. As a parent you will probably want to know the cause of your child’s epilepsy even if that information does not make any difference to the course of the condition.
In the same way, learning disabilities should not prevent a child from being considered for epilepsy surgery, though they may not be suitable if they have generalized brain damage. If seizures arise from a specific focus surgery may
cure the epilepsy, though it can not cure the learning disabilities. It may, however, prevent the learning disabilities from getting worse, because people who have very frequent and severe seizures do often suffer some mental deterioration.
COPING WITH AGGRESSION
Aggression is not characteristic of epilepsy, but it is, quite often, a by-product of brain damage. Drugs may also contribute to aggressive behaviour. Any anticonvulsant can occasionally cause aggression, but the biggest culprits are the sedative drugs, myselin and phenobarbitone. Sometimes phenytoin has the same effect, as does, less often, sodium valproate.
So it is not surprising that children who are brain damaged and often taking more than one anticonvulsant drug are sometimes irritable and aggressive; often their behaviour is problematic in other ways too. However, when a child is very aggressive or badly behaved, there are very often other causes besides drugs.
Difficult behaviour of any kind arouses very strong emotions in parents. Inevitably your own emotions are going to affect the way you respond to the child; the chances are that you will feel angry, and if you do you are likely to respond angrily. This reaction is understandable, but unfortunately a negative response to difficult behaviour often has the effect of reinforcing it and making it worse.
How to respond
How you respond to someone who seems to be behaving ‘badly’ depends very much on why you think they are behaving this way. If you think that the child could, if they wanted to, control their behaviour, that it is simply part of their personality, or a direct attempt to manipulate you, then you are much more likely to be angry with them than if you saw the behaviour as something that is a by-product of their disability, and therefore largely outside their control. In this latter case you would know the child could not help what it was doing, and you would be more likely to be sympathetic. You would feel pity rather than anger, and you would probably be more tolerant and respond much more positively to them.
If you can analyse your child’s behaviour quite closely, so that you can see what has led up to it and what its consequences are, you may understand it better (keeping an ABC chart in the way suggested on pp.97-100 is one way to do this). Sometimes, for example, a child uses ‘bad’ or aggressive behaviour as a way of communicating. The child may feel emotions – ‘I’m frightened,’ or ‘I’ve had enough’ – but may not have the words to express them. Aggression may be the only way they can ‘say’ what they feel. And if at the same time you examine your own beliefs about the causes underlying the child’s behaviour, you may understand your own emotions and perhaps feel better able to deal with them and to respond to your child in a different way. Sometimes, for example, parents are comforted by believing that their child has some control over his or her behaviour; they themselves need not then feel so responsible and guilty about it.
If your child’s behaviour is a problem, ask for help from the specialist professionals in either the Child Development Team or the Community Team for Learning Disabilities. Many areas have special intensive support teams who will work either with the family or with the school, to help manage and reduce aggression or other problems. Drug treatment is very seldom the answer, though sometimes it can help modify aggressive behaviour.
It is also worth bearing in mind that psychiatric illnesses such as depression or schizophrenia may show themselves quite differently in someone who has severe learning disabilities. Someone who is depressed, for example, may not necessarily appear to be sad; instead their behaviour may deteriorate quite markedly.
LOOKING TO THE FUTURE
What will happen to our child when we are gone? Any parent whose child has profound difficulties worries about the future and has probably asked themselves this question. It is an anxiety that has to be faced and the best insurance policy for your child’s future is for you to try and ensure that they achieve a degree of independence while you are alive. You might aim, for example, to get them established in a group home when they become adult.
However, in some regions this will be easier than in others. It will depend on the extent of accommodation available and the state of social service funding. Social services departments or your local Community Learning Disabilities Team are the first people to approach. They will know what facilities are available in your area, including houses run by housing associations and privately run homes. They will also help to assess whether the accommodation will meet the needs of your child. In addition, social services hold the purse strings, and any application, whether to a privately run home or to a home run by a housing association will need funding agreement by your local social services department.
Letting your child go
Even if you are lucky enough to find just the right home for your child, where they will be competently cared for and have just the right mixture of companionship, care and independence, your own feelings about the move will probably be mixed. Most parents in this situation feel a mixture of guilt (‘We should be able to continue to look after our own child; it’s our job’), as well as a very natural sense of relief. They may feel anxiety (‘Will anyone else be able to take care of our child as well as we can?’), and huge personal loss. Looking after your child has probably taken up a large part of your life; it has given you a role and a purpose and it may take you some time to come to terms with this dual loss. But however hard it is for you, independence has to be the best decision you can make for your child.
TREATMENT OPTIONS FOR SEVERE EPILEPSY
When a child’s epilepsy is very severe, a doctor may pile on drug after drug, in a desperate attempt to get better seizure control. However, after a certain point there is often little benefit to the child in this course of action. Obviously when a child has severe epilepsy the doctor has to aim to reduce the frequency of seizures. But a balance also has to be struck; prescribing ever more anticonvulsants may simply make the child increasingly slow and drowsy without having much extra effect on seizures. If your child seems to be very over-drugged, it may be better to talk to your doctor about the possibility of cutting down the number of different medications they are taking so that they become brighter and more alert, even though that means accepting that their seizure frequency will not be reduced any further.
A few children have intractable epilepsy combined with very severe physical disability, for example a hemiplegia (paralysis of one side of their body). They may be able to walk, but otherwise have little useful function on one side of their brain. The risk for these children is that the severe, unremitting seizures arising in the damaged side of the brain may gradually damage the other, ‘good’ side of the brain, so that they no longer acquire any further skills and may actually deteriorate, losing those skills they already have. For these few children the operation of hemispherectomy, to remove the damaged half of the brain is worth considering.
Hemispherectomy is only an option if damage is extensive but confined to one side of the brain. But for these few children it can greatly improve the quality of life. They have fewer seizures, need fewer drugs, and become brighter, more responsive and sometimes less aggressive and better behaved too. Parents often say they notice this change in behaviour almost immediately after the operation.
*77\193\2*