Many people report that the most frightening thing about seizures is their unpredictability. Epilepsy is episodic. In other words, no one can predict when a seizure will occur. Therefore, it may be even more difficult to adapt to epilepsy than to other more predictable chronic conditions.
Epilepsy is a chronic disorder and may have the same types of effects on children as would a chronic disease. Children with epilepsy must learn to live with this brain disorder.
Even a child whose epilepsy is well controlled with medication may still be fearful about having another seizure, especially in the presence of peers.
Quality of Life
It is not enough to treat only the medical aspects of the child’s seizure disorder. The psychosocial, emotional and physical components of the child’s life must all be considered as well. Research shows that parents may interfere with their child’s healthy psychosocial adjustment by being overprotective, rejecting or having low expectations of him/her.
Children with epilepsy can attain a high quality of life. Parents who know when to let their children have their own freedom, who accept and support their children as they are, and who encourage their children to have new experiences can greatly assist their children in attaining the skills, which will help them to have fulfilling lives.
Stigma of Epilepsy
Research shows that the attitudes of others about epilepsy has more impact on people than does epilepsy itself. Attitudes toward people with an invisible impairment, such as epilepsy, are generally less positive than towards those with a visible impairment. The social stigmas associated with epilepsy can be very detrimental to children are often very self-conscious about their appearance and it may be very difficult for them to deal with having brief seizures in public. Children fear being viewed as “different.”
A newly diagnosed child’s perceptions of the disorder largely depend on the parents’ reactions to it. How the child’s parents deal with the disorder, rather than the severity or frequency of the child’s seizures, determines how well the child adapts to the disorder. Instill confidence in the child by praising what s/he can do.
Allow your child to make choices to foster independence. Do not isolate the child, saying “It’s for your own good.” All children deserve the same opportunities. All children need to learn how to take reasonable risks. Facing fear and failure is a valuable learning experience necessary for a child to grow and mature.
Disclosure
The decision whether or not to tell others about a child’s epilepsy depends on many factors.
The social stigma of epilepsy is experienced sooner or later by both children and adults. Many people feel anxious about the prospect of having to deal with a person who has epilepsy. To help build your child’s self esteem, you should encourage openness. Secrecy reinforces the idea that epilepsy is something shameful. Secrecy interferes with acceptance and can erode a child’s feeling of self-worth. A straightforward approach to dealing with epilepsy may appear to be difficult initially but will be more helpful in the long run.
Coping with uncertainty is part of having seizures. Taking an active role in understanding your child’s seizures and how to deal with them can help make the uncertainty more manageable.
The decision whether or not to tell others about a child’s epilepsy depends on many factors. Before you tell anyone outside of the family about your child’s condition, you should discuss it with your child. Ensure that your child understands why it is necessary to disclose his/her condition. It is probably not necessary to tell everyone about your child’s condition, so discuss with your child who you are going to give this information to. Allow your child to play a role deciding who to tell about his/her condition.
General Guidelines
As a general guideline, you should consider informing people of your people of your child’s epilepsy once s/he has had more than one seizure. This is especially important when the seizures are frequent and when the child’s medication causes side effects. Informing others of your child’s epilepsy will allow them to be prepared in the event of a seizure. If the child’s friends seem understanding, the decision to tell them about the child’s epilepsy may be easier.
It is never easy to predict how others will react. While you may be fearful that other people will dwell on the disorder and blow it out of proportion. It is important for your child’s safety that other people are informed. Use your own judgement in deciding what to tell others, remembering that openness is preferable.
Advantages of Disclosure
- Helps others understand your child’s condition.
- Enables others to learn how to help your child during and after a seizure.
Disadvantages of Disclosure
- Focuses the attention of others on just one component of the child’s life – epilepsy.
- Perceptions of the child as a whole may be diminished, with epilepsy assuming a disproportionate share of the child’s identity.
General Guidelines
- Seizures are only one aspect of your child’s life. Focus on everything that your child has to offer.
- Do talk about epilepsy with your child. Tell your child the truth about epilepsy and its possible implications. What you tell should depend on the child’s age, sophistication and level of understanding.
- Ensure that your child understands that the seizures are not his/her fault.
- Treat your child the same as you would had they not had epilepsy. Try to not overprotect your child. Overprotection signals to a child that s/he is not capable and should not be independent.
- Encourage and support your child to learn, explore and experience new situations in order to develop and sense of confidence in his/her abilities.
- Point out the characteristics of your child that make him/her special and unique.
- Encourage your child to love him/herself.
- Tell your child that you love him/her. Don’t assume that s/he knows it. This will also help to teach your child that it is acceptable and desirable to communicate feelings openly.
- Listen carefully to your child’s thoughts and ideas so that s/he knows that what s/he says and feels is important, heard and valued.
- Have realistic expectations of your child. Unattainable goals will only frustrate both yourself and your child and will lead to feelings of failure. However, lowered expectations may communicate a lack of confidence in the child.
- Let your child take responsibility for his/her actions. Encourage him/her to play an active part in the management of his/her seizures.
- Never use labels such as “epileptic,” “stupid,” “lazy,” “clumsy” to describe your child.
- Respect your child’s need for privacy.
- Be a positive role model for your child.
- Because your child may have concerns about being different, it may be important to reinforce a sense of belonging within the family. It is also important to help him/her to find ways to explain his/her epilepsy to others.
- Keep in mind that it takes time to develop a positive self-image and feelings of self-worth.
School Support Services
ESEO provides a number of services to support parents and educators integrate children with epilepsy into their classroom and school.