One of the important responsibilities that a parent of a child with epilepsy will face is the responsibility of helping the child cope with their condition both emotionally and practically, so that they learn to manage their own health as much as is possible.
This is not a simple task. It requires open, careful communication, patience and trust.
A variety of factors will determine how much information to give your child about their condition and when to provide that information.
A child’s age, developmental abilities, and other personal factors are important considerations. It is necessary to recognise the important impact of epilepsy on a child and to be responsive to their needs as they adjust to their condition.
However, it is equally important not to lose sight of the fact that a child with epilepsy is first and foremost a child with multiple qualities and interests. It is important to place the child with epilepsy in that broader context to reduce the risk of having epilepsy define the child.
The decision of how much to tell your child is a critical one. It is important to strike a balance in the information that is provided so that the information enables the child to understand their condition without causing anxiety.
Children are very perceptive and will invariably know that something is somehow different. Being honest will avoid confusion and mistrust. It will help you in the future to build your child’s skills and capacity to reach their optimal level of independence, and, in most cases, to manage their own epilepsy.
Regardless of the child’s age, they are likely to have questions and concerns. Like parents, they will have feelings about their situation and will need time to adjust. Children will generally let their parents know how much information they want.
Open, honest communication will help the child to feel comfortable about asking questions. It will help the child feel safe and secure.
In communicating with your child about their epilepsy, it is helpful to:
- Be honest about the diagnosis and implications of the diagnosis.
- Provide information in a developmentally and cognitively appropriate way - tailor the information to your child’s level of understanding.
- Encourage the child to ask questions and talk about their feelings - always try to be available to answer any questions the child has in a straight forward way.
- Reassure the child - e.g. tell them that the parents and doctors will work together to help the child manage their epilepsy.
- Reassure the child that the epilepsy is not their fault - sometimes children imagine that their illness is a punishment for something they have done or thought.
- Be honest about your own feelings but do not overburden the child with your feelings - be positive and optimistic about your ability to cope.
- Seek support from your child’s doctor or healthcare team to help explain the diagnosis to your child.
- Provide information to help your child know what to expect in terms of seizure onset, management of the condition, preparation for procedures, or feelings they may experience.
A child’s feelings about their diagnosis may change over time depending on the progression of the condition and their developmental stage. It is important to encourage your child to talk about their feelings and concerns.
It is also important to recognise that sometimes a child may feel more comfortable talking to another adult about their feelings, perhaps a grandparent, aunt, teacher, school counsellor, and so on.
Adolescence can be a challenging time for young people with epilepsy as they struggle for independence from their parents, attempt to conform to their peers, and forge their own sense of identity.
It can be a time of high anxiety for parents who may be concerned about compliance with medication and other potentially risky behaviours. Open honest communication and information, along with a healthy dose of patience will help.
In many ways, parenting a child with epilepsy is the same as parenting any other child, only with a few extra requirements depending on the nature of their epilepsy. For this reason, it will be important for parents to treat their child as much as possible as they would any other child. This will help the child lead as normal a life as possible.
Participation in the types of activities that children of a similar age would normally participate in should be encouraged (within the limits of the child’s abilities and safety requirements). Likewise, appropriate discipline and boundary setting are as important for children with epilepsy as for those without. Expectations of your child should be clear and discipline should be consistent - e.g. completing homework, undertaking chores, and being polite.
These measures will help ensure that the child develops good social and practical skills which help them achieve their optimal level of independence in their social environment. It will help the child feel included and respected as an equal member of the family and community. This will also help equalise the relationship with siblings.
The key is to strike a balance which takes into account the child’s ability and fairness in expectations of behaviour and participation.