Coping with Unpredictability
Seizures have the potential to interrupt normal routines by affecting a child's behavior or consciousness. This, in turn, can impact a family's daily activities. However, as unsettling as a seizure itself may be, the inability in many cases to predict when, or if, another seizure will occur may have an even more profound impact on daily family life.
Being unable to predict the path that a child's epilepsy will take inevitably causes worry among all members of the family. Although the concerns may vary among family members, anxieties, fears, and even resentment can affect each family member's self-image as well as how they interact with and feel about each other. For example, parents may respond to their child's epilepsy by being overprotective or overindulgent; the child with epilepsy may withdraw from friends or social activities for fear of being embarrassed in the event of a seizure; and siblings may try too hard to please their parents or be too willing to allow their needs to go unmet, or may have feelings of resentment toward the sibling with epilepsy, who is getting more parental attention.
Epilepsy is an illness that affects obviously the child and clearly the parents, but an often forgotten player in it is the child's siblings.
Nicole Danforth, MD
Although such powerful emotions are a natural response to epilepsy, a constructive approach can dramatically improve the quality of life for the entire family. For instance, by focusing on what the child can do, rather than what he or she cannot do—parents help the child, and his or her siblings, to view life with a positive attitude. Indeed, one of the best indicators of epilepsy's impact on a child and his or her family is how family members—especially parents—react to the child's diagnosis and seizures. As with many aspects of life, children with epilepsy often view their disorder through the eyes of their parents.
Being "normal" and leading a normal life is extremely important to most children. And although this notion is inherently subjective, many children with epilepsy are convinced that no one understands how it feels to have a seizure or worry about having one. For a family with a child with epilepsy, both that child and his or her siblings may feel that things are not "normal."
Children with epilepsy, like all children, require opportunities to be independent, to risk, to maintain friendships, and to experience life as normally and as fully as possible. They also require discipline and must learn early in life the reality that everyone has problems and issues that must be dealt with and that no one has everything that he or she desires. It may also be important for children with epilepsy to know that feeling "different" is something many children experience, whether they have epilepsy or not.Learn how to talk about epilepsy
Naturally, parents want to shield their children from physical and emotional harm. Sometimes this desire to protect their children, mixed with their own feelings of guilt and anxiety, may cause parents to be overprotective or overindulgent, resulting in other kinds of problems for their children. Balancing the need to protect a child from seizures and their effects with the child's need for independence and discipline can be one of the most difficult and important tasks that parents of a child with epilepsy face. However, doing so is essential to the child's psychological and social well-being.More about safety, activities and first aid
Self-esteem is a key ingredient to success in life. Children with a healthy self-image are able to approach challenges with a positive attitude and the confidence that they can accomplish whatever they set out to do. Unfortunately, many children with epilepsy have a poor self-image. Experiencing seizures in front of peers, or fearing that they will have one, can make children withdraw from social situations. Knowing and being told that aspects of their brain function are abnormal can make children feel different and ashamed. Unlike many physical abnormalities, a neurological disorder like epilepsy is difficult to see and may be even harder to understand. As a result, not only do some children with seizures feel that they are flawed in some way, but they may also feel that their peers could not possibly understand their condition, particularly when they don't fully understand it themselves.
One of the most important steps parents can take toward building the self-esteem of a child with epilepsy is to communicate honestly with the child about his or her condition in a manner that is appropriate to the child's age or emotional development. Research suggests that children who are well informed about their condition are better adjusted psychologically and socially than are those who are poorly informed. It follows that the less children with epilepsy know about their condition, the larger the problem becomes in their mind and the more they fear that others will discover their disorder.
Children with epilepsy, like all children, should be encouraged to pursue friendships and social activities. In addition to parental acknowledgement of a child's worth, the attention and sense of belonging provided by a child's peers are particularly important to building self-esteem. As well, social activities such as plays and dances, and physical activities such as sports, provide challenges and opportunities to succeed and build self-confidence.
However, parents must weigh the benefits of social and physical activities against any risks that a child with epilepsy might incur by participating. Some activities may be more appropriate than others, given the child's specific seizure type and level of seizure control. In general, the risk of social isolation is often much greater than any physical risk posed by participating in activities.Cherinee's story: karate and community
Camps and other group activities created specifically for children with epilepsy can be particularly beneficial by providing children with the opportunity to socialize and create friendships with children who have had similar experiences. In this environment children can share thoughts and feelings about epilepsy. They can feel safe, knowing that if they have a seizure, their peers will understand. Perhaps more importantly, the similarity of their experiences allows children to look beyond epilepsy and to discuss topics that any other group of kids their age would talk about.
One of the goals of the group activity is to normalize the experience of epilepsy. If there're in a class and everybody else has epilepsy, then epilepsy's not that big of a deal.
Nicole Danforth, MD
To learn more about activities for children with epilepsy, see the Activities, Safety, and First Aid page.
Providing Connections for Siblings
It is common for siblings of children with epilepsy to struggle with their own feelings of anxiety, guilt, and frustration. Not only do they observe their parents worrying about their brother or sister's seizures, they may also feel responsible and wonder if they somehow caused the seizures by thinking a hateful thought or making their sibling fall. It is also common for siblings to experience feelings of jealousy toward the child with epilepsy, who gets more attention from the parents.
Parents must make a concerted effort not to overlook the other children in the family, especially if caring for the child with epilepsy is particularly demanding. If siblings are in the habit of hiding their feelings, then the parents may need to initiate discussions with them. By approaching discussions with sensitivity and honest expressions of care and concern for all of their children, parents can help to ensure that the siblings of a child with epilepsy grow up healthy and happy.
Siblings often struggle with their own feelings, which interestingly they often keep to themselves because they don't want to worry Mom and Dad further.
Nicole Danforth, MD
Sibling groups can also provide much-needed support for the brothers and sisters of children with epilepsy. Sibling groups are typically facilitated by a counselor who understands family issues and dynamics with regard to epilepsy. These groups provide siblings with the opportunity to share and receive validation for their experiences and feelings about having a sibling with epilepsy, which often lessens their own feelings of isolation and shame.
To learn more about sibling groups and epilepsy camps and classes, ask your physician or see the THRIVE Epilepsy Wellness Program page.
Caring for the Caretaker
Parents of children with epilepsy are often consumed by the task of caring for their child. Quite often families affected by epilepsy begin to think of themselves as "epilepsy families," rather than just families, and parents may place too little emphasis on healthy, fun activities. In fact, it is common for parents to care for themselves last, only after they have finished caring for everyone else in the family.
Parenting is a difficult job, and the stresses and uncertainties of epilepsy inevitably make that job even harder. Unless parents take good care of themselves, they risk becoming emotionally drained, and possibly physically ill themselves. To avoid these hazards, parents must take the time to nurture themselves both emotionally and physically, even if they don't think they can afford the time to do so. For example, many parents of children with epilepsy find that the time they spend alone together, on regular "date nights" or during weekends away, ultimately benefits the entire family. Creating a strong foundation of hope, patience, and love will inevitably have a positive effect on the lives of all family members, including the child with epilepsy.
An educational psychologist is a licensed psychologist who evaluates children with learning difficulties and advises educators and parents on the child's development and educational progress.
A neurologist and a pediatric neurologist are physicians who take care of people affected by disorders of the nervous system. An epileptologist is a neurologist or a pediatric neurologist who specializes in the treatment of epilepsy.
A neuropsychologist is a licensed psychologist with expertise in the evaluation of cognitive and behavioral functions.
A social worker is a licensed professional who provides support to families and children with medical or psychological issues.
Patient & Family Stories
In addition to describing experiences common to most people affected by epilepsy, each story illustrates a particular issue that has been important to that family and that other families affected by epilepsy may encounter.