by Dr. Toni Mantini-Atkinson, Ph.D., C. Psych.
In order for children to exhibit optimal behaviour throughout their development, they must develop patterns of coping and feelings that remain flexible so that they can meet each new developmental task adequately. The impact on the child's development of having to cope with epilepsy can cause a deterioration in the child's healthy developmental emotions and behaviour. The experience of epilepsy for the child and adolescent can create an enormous challenge to the child's natural development towards adaptive behaviour.
Despite the fact that children work very hard to make a positive adjustment to their illness, the experience of having to deal with seizures as part of their everyday development has a potential to traumatize children. Despite the best efforts of a family, a child or adolescent can become so overwhelmed with having to cope with epilepsy that the child experiences major disruptions in their development.
As a way of coping with their feelings about how to integrate these disruptions into their daily lives, children tend to begin having behavioural and emotional difficulties. This, of course, can present even greater challenges to the whole family and can make the child even more at risk. Even when the seizures become under control, the child can continue to experience difficulties in coping with normal everyday demands.
Background
The area of emotional adjustment in epilepsy has been of interest for decades. Even though emotional problems or behavioural difficulties constitute the primary area of concern for many people working with families of children with epilepsy, the literature has provided little information on how epilepsy interferes with behavioural development. Even less information is available about types of therapeutic interventions which are helpful.
Although it is universally recognised that the brain is dysfunctional during an epileptic seizure, it is appreciated less frequently that for many people with epilepsy, brain dysfunction continues to exist between attacks. Since the brain is the basis for the child's ability to adjust to the stress and strains of everyday life, it is reasonable to expect that difficulties in adjustment or behaviour are likely even between seizures and in an ongoing fashion.
When discussing behavioural and emotional development in children, it is also referred to as psycho-social functioning. Primarily linked to the experience of epilepsy are feelings. From the feelings behaviours develop (usually negative and destructive ones because the feelings tend to be negative), and this pattern of behaviours then leads to the quality of psycho-social functioning. Overall, psycho-social functioning deals with the effectiveness of the person in the social environment. The emphasis here is on how well the person functions in the myriad of situations, including those pertaining to education, peers, family, and a host of interpersonal relationships inside and outside the home. In the case of people with epilepsy, this area also includes adjustment to seizures, medication and the need to relate under constant unpredictable circumstances.
Research on Adults
In the most recent review of all studies investigating psycho-social problems in epilepsy, Lavin, Banks, and Birk (1988) found that adults with epilepsy are 2 to 7 times more likely to experience serious problems in psycho-social adjustment. It has been demonstrated, with some people with epilepsy, that behavioural difficulties occur beyond their seizure disorders (Rodin, 1977). Clearly psycho-social and emotional factors which underlie behavioural difficulties in children represent a substantial portion of a complicating concern found in epilepsy.
Investigators researching the impact of epilepsy on adults often refer to the so-called "Temporal Lobe Syndrome". This term is used to apply to a series of behavioural characteristics thought to be present in adults with complex partial seizures who often have involvement of temporal lobes. These characteristics include hyperactivity, heightened emotionality, anger, sadness, over-attention to detail, and sobriety.
Several types of emotional problems in epilepsy have been reported repeatedly, such as depression, psychotic-like conditions, aggression and hyperactivity. Stressful life events, poor adjustment to seizures and familial stress are pre-disposing factors. In addition, the stressors of the seizures which present as an intermittent and completely unpredictable crisis, also represent an obvious source of distress and complication for emotional development.
Cases of psychosis in epilepsy have been studied for many years (Trinble, 1992). The literature with adults argues that it appears likely that the basis for unusual thought patterns is in underlying brain dysfunction (Conlon, Trinble, and Rogers, 1990). Another belief is that aggression is a major manifestation of epilepsy. However, a review of the literature reveals very little evidence to support the connection between aggression and epilepsy (Treiman, 1986).
While the investigation of epilepsy and adult adjustment fails to demonstrate the uniqueness and specificity of behaviour in relation to epilepsy, it has been my experience that children in fact do share common feelings, emotional experiences and behaviour when having to endure seizures.
Children's Behaviour
The impact on a child's emotional behavioural adjustment is striking, not so much in the individual behavioural difficulties that coping with epilepsy presents, but rather in the whole negative pattern that the child adopts as a way of understanding their experience. For example, some of the behaviours which are warning signs that the child is having difficulties in coping with epilepsy are hyperactivity, confusion, disorganized speech, inability to listen to and comply with directives, and a lack of pleasure. While each of these on their own can be part of many behavioural syndromes, together they communicate to the outside world the stress of coping with epilepsy.
With these children who experience both controlled and uncontrolled seizures, it is important to view the negative behaviours as a child's way of trying to cope with a frightening and unpredictable situation. Despite the helplessness and emotional pain that children and families experience, we also know that children can be helped to turn these negative reactions into positive ones. It is my belief that children are extremely motivated towards successful adjustment and will accommodate the seizures in a positive manner over time if given the opportunity.
Children's Emotions
The types of behavioural difficulties that children with epilepsy tend to experience are generally a result of the frightening, helpless and traumatic state in which children with epilepsy often find themselves. Every child works hard to maintain a smooth and unobstructed pathway in their development. Epilepsy, however, does disrupt the child's course of development, particularly from an emotional and behavioural point of view.
It is clear that the child is experiencing their day-to-day activities with much emotional pain. Their sense of themselves in the world around them becomes increasingly one of a great sense of vulnerability. This then triggers the child to become more aggressively active. The seizures are often experienced as attacking and threatening, which in turn heighten the child's feeling of vulnerability. The experience of a child on a daily basis becomes so unpleasant that the child often has no choice but to express it in a hostile or negative manner.
"...what is specific to the child experiencing seizures is the shattering of their capacity for integrating and organizing themselves in a stable manner."
Although the hyperactivity, aggression and confused state of the child make it very difficult for the family, it is important to remember that the behaviour is stemming from the fact that the child is quite unhappy and feels threatened by what might happen on a daily basis. The use of distractibility, avoidance and negativity become the child's coping mechanisms.
Children Feel Vulnerable
In my work with children and their families, children verbally and behaviourally express feeling "scattered", "shattered", and in a "frightening disarray". With these feelings as the basis for behaviour, it is understand-able that the child begins to have concentration problems and severe temper tantrums. As a way of defending themselves against these negative feelings, there can also be increased irritability, agitation, and frequent rage. The outcome of having to cope with the "unpredictable, attacking nature" of seizures as a part of their development is an extremely frightening and tense experience for children. This often leads to children becoming aggressive or hyperactive in response to their concern for their bodies.
In short, epilepsy puts children in a state of feeling vulnerable about their bodies and fragile about their well being. This state tends to leave children with only the recourse of isolation, avoidance and acting out behaviour. This preoccupation with their fears of being "shattered" extends into all areas, reducing the possibility of pleasure in intellectual achievement or in personal relationships. At times, the intensity of these concerns becomes so great that it can produce serious difficulties in how the child relates to people around him/her. What is most concerning to families and professionals is that children coping with seizures certainly have the capacity to interact in a positive way, but often have not developed the ability to stabilize and regulate a positive way of being.
In studying the development of children coping with epilepsy, it has become clear to me that what is specific to the child experiencing seizures is the shattering of their capacity for integrating and organizing themselves in a stable manner. Without the adult intellectual capacity to understand their seizure disorder, the child becomes prone to quick, severe, regressive behaviour under this stress. Because seizures are perceived by the child as a fearful state, other activities happening at the same time, whether they be related to academics or relationships with parents, are also perceived as threatening. A child does not have the cognitive capacity to separate and distinguish the experience of the seizure from their other daily experiences.
"...children are extremely motivated towards successful adjustment and will accommodate the seizures in a positive manner over time if given the opportunity."
At the same time, by being able to understand their experience through an adult articulating and describing the experience, the child does develop the capacity to integrate and organize themselves around having epilepsy in a positive manner.
Emotional Milestones of Childhood
An important consideration in trying to understand the behaviour of children with epilepsy is that their emotional development is equal to that of children who do not experience seizures. For example, while the child with epilepsy may sometimes exhibit differences in their physical or neuro-logical development, they must proceed and complete the same emotional milestones as all children.
It is these milestones which are disrupted by their experiences of seizures. The milestones or "jobs" of the child become extremely difficult to accomplish without some help in resolving the "job" or milestone well. Once the child is able to put the "shattered pieces" back together in an integrated, organized manner, they then can also put themselves back on track to optimal behavioural adjustment.
Understanding these milestones, it can then be easier to see a child's progress from one stage to the next, while also seeing where they may be "stuck". In children with epilepsy, this progression becomes quite disrupted and does not occur as it might. Helping the child to overcome these difficulties before they become too over-entrenched into his/her personality structure can be valuable in keeping them on track with optimal behavioural development. It is as though the experience of the seizures disrupts the child's ability to carry on with normal emotional development. If this occurs, feelings of irritability, confusion and disarray occur. It is these feelings which then trigger tantrums, mood swings, excessive stubbornness, hyperactivity and concentration problems.
The Jobs of Childhood
The "jobs" of the child which ensure behavioural and emotional development are as follows and are mastered in sequence:
1. To be able to organize himself/herself, and to feel a sense of peace in exploring the world.
2. To become highly interested in people around him/her.
3. To learn the cause-and-effect actions in the world, to learn how to connect feelings and social behaviour into positive patterns, and to be able to communicate his/her needs and feelings in a clear way.
4. To be able to have positive images of himself/herself in the family in mind.
5. To be able to construct pictures and people in their imagination and carry this with him/her on a daily basis.
6. To learn how to separate realities from make believe. To be able to expand and distinguish the feelings of independence, compliance and pleasure from aggression and impulsivity.
Dealing With Behaviour Problems
In the past, a lack of understanding of these adjustment problems in epilepsy has represented a major obstacle to treatment planning. Understanding the "jobs" of development can also provide us with some guidelines towards rehabilitation in the emotional and psycho-social areas of the child. It has been my experience that an intense program of intervention specifically aimed at helping the child towards re-organizing and re-integrating their experiences in a positive manner is the best opportunity for significant change in the behaviour of the child. It is important to remember that while the child is exhibiting anger, anxiety, hyper-sensitivity, and confusion, as well as a strong preoccupation with physical injuries, they are actually attempting to communicate their own emotional pain and distress.
Dealing with the emotional problems and feelings appears to be the first line of action for these children. As a result, it is very important for family members to build a trusting, calm and nurturing relationship with the child. Keeping in mind the "shattered" pieces that children perceive themselves to be in both physically and emotionally, it is clear that intervention should address this. It is likely valuable to provide children with the opportunity to act out or play out their experiences as much as possible; to follow their lead and play, and to encourage the child to communicate their experiences through their play or discussion. It can be very helpful to the child to feel that it is acceptable to discuss his/her experiences of the seizures. For instance, "what does it feel like?" "It is as if ..... ?" With ongoing support of the child's experience, the child can achieve a steady success of mastering the challenges of his/her jobs of development while at the same time coping with epilepsy.
In Conclusion
From a behavioural perspective, the diversity of psycho-social and emotional difficulties seen in children with seizure disorders appears to be quite wide, yet the actual feelings underlying the behavioural outbursts are actually quite straightforward and centered in the child's struggle to master the emotional milestones of development. At the present time, research is lacking and professionals trying to help children and their families do not have many treatment methods from which to choose. It is not helpful to apply treatment programs to children as if they had emotional problems that are unrelated to their epilepsy. Clearly, what will resolve the child's disarray and create a favour-able change towards optimal child development, is an understanding that the behaviours are directly related to the impact of epilepsy on the child's emotional development. It appears that we have a lot to learn about psycho-social, emotional and behavioural development from the stories that children show us or tell us about their experience with epilepsy.
Dr. Toni Mantini-Atkinson is a Child Psychologist.
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