A child's illness complicates the challenges of family life. The epilepsy of a child with minor seizures that are fully controlled should not unduly affect the family. But when a child's seizures are more disabling, or when the child also has other physical or neurological disorders, family life is always affected. All relationships in the family are changed-the relationship of the parents with each other, the parents' relationship with the children, and the relationship of brothers and sisters to the child with epilepsy.

The changes that epilepsy in a child bring to a family deserve careful attention. The child with epilepsy has special needs, but so do the other children in the family. As their age and maturity permit, siblings should also be educated about epilepsy. They should not be neglected. They should be given honest information that they can understand, and encouraged to ask questions and express their fears and feelings. Because the child with epilepsy will draw time and attention like a magnet, parents must make special time for their other children. This action will help prevent later resentment directed at both the parents and the child with epilepsy.

Just as it may be helpful for the child to join a group of children or have a buddy with epilepsy to share experiences with, it may be helpful for the parents to join a parents' group or to have other parents to talk with and share experiences with occasionally. The parental "grapevine" for children with medical disorders is one of our most powerful communication networks. Parents share problems, frustrations, coping strategies, achievements, and joys, as well as information about doctors, hospitals, medications, and educational and recreational programs. Parents also build strong bonds in the process. The local Epilepsy Foundation affiliate may have parent groups. A pediatrician, neurologist, or comprehensive epilepsy center may be able to put parents in touch with other parents of children with epilepsy. A motivated parent can easily be the force to create a local group.

It is important to be aware that information gathered from conversations with other parents in person or on the Internet is often based on the experience of a single child, the results of a single drug trial, or "gut reactions." These perspectives may be accurate in a specific instance but are often the exceptions or are incorrectly interpreted. Parents should be skeptical of "interesting" results that have not been subjected to rigorous scientific testing.

Getting on with life

"Initially, Jim and I were so consumed by Anthony's epilepsy that nothing else seemed to matter. Between the seizures, medications, doctor visits, tests, meetings with teachers, and our jobs, there was no time for anything else. It took us 6 months or so, but we have finally realized that life goes on for Anthony, for his older brother Paul, and for us. We do special things with Paul to let him know how much we love him. We also have our parents come every few months to spend the weekend with the kids so that we can just get away. Now we can give Anthony the attention he needs without resentment or guilt."

Once the child's epilepsy has been diagnosed, treatment has begun, and some time has passed for understanding and accepting the disorder, it is time for the parents to get on with their lives. In the mildest cases, this is easy. In the cases of moderate severity, with intermittent seizures and some adverse medication effects, resuming normal life is a challenge. In the most serious cases, especially those with other neurological disorders, assuming a normal life may seem impossible, but is not. For families with children who have frequent and intense seizures and associated developmental problems, life can never be exactly the way it would have been if the child did not have these problems. But the situation does not mean that the parents can never spend time alone together or enjoy their life. They can. They will just have to work harder to get the time.

There are two steps toward resuming the life the parents want. The first is all about attitude. Parents must accept the disorder and the associated disorders for what they are, and understand the needs of the child with epilepsy and their other children, as well as their own needs and those of their partner. It means that parents must search for the best care for their child, decide how they want to live their lives, and most important, decide that they can do it. Some parents feel as if they are swept up in a current, and the current is pulling them. That is true for everyone at the beginning. It is important that parents not passively ride the current, however, or they will find themselves in a place they do not want to be. Instead, they must determine the direction.

The second step is acting on the commitment to a satisfying life. Parents must work toward a balance between their needs, the needs of their child with epilepsy, and the needs of other family members. Their happiness and the soundness of the other relationships in the family will positively affect the child with epilepsy. Unfortunately, divorce is much more common among parents who have children with developmental disabilities than among couples in general. Early recognition of the additional stress and open communication about feelings and responsibilities can be invaluable. For some parents, it is a good idea to investigate family support, getting help around the house, community programs, respite programs, and the local Epilepsy Foundation affiliate.

Counseling

"I thought that Jake told us everything. We were positive and supportive about the epilepsy, and it seemed like he was doing great. We never suspected that things were bothering him-the epilepsy, feeling pressure to get good grades, and other kids in his school. It was building up inside for a while. When the school called to ask how he was doing, we realized that he had been missing classes for a while, telling the teachers he had seizures. It was all too much for him. The counselor has been a godsend. Jake needs us, but he also needs someone else."

Parents, brothers and sisters, grandparents, and teachers provide children with role models, advice, guidance, and support. They provide a nurturing environment and a positive outlook, but usually none of them has epilepsy. Despite their best intentions and loving support, they often fail to ask, "How do you feel about having epilepsy?" "How do you think other kids react to you because you have epilepsy?" "Do you understand what the doctor said?" "What are your greatest fears?" If the diagnosis and treatment of epilepsy are confusing for the parents, they will certainly be bewildering to the child. In addition, the social impact of epilepsy is often psychologically painful for the child, as we mentioned in the last chapter.

The majority of children with epilepsy do not require formal counseling, but all of them require education about the disorder and help in learning to adjust to it. Counseling can be an important support for children with epilepsy. The counselor provides the outside perspective that is often lacking. Parents are well-meaning, but their concern can be misdirected into telling the child how to feel and how to act. Although all parents feel that they know what is best for their children, it can be difficult to determine what is truly best. A dialogue is often much more helpful than a suggestion or an order. The successful counselor can help "open" the part of the child that epilepsy can hide. The essence of counseling is to provide understanding and help the person cope with the medical and social impact of the disorder. Counseling can be beneficial for the child alone or the entire family.

Referral for counseling

The recommendation for counseling can come from a doctor, social worker, teacher, or school guidance counselor. However, counseling is of no benefit unless the child or family wants it. Finding the right counselor is usually not difficult. The doctor, school guidance counselor or psychologist, social worker, and local Epilepsy Foundation affiliate are potential sources of information and referral. The counselor must have some knowledge of epilepsy. In addition, there must be a good relationship and trust between the counselor and the child. If the "chemistry" between them is not good, it is not wise to pursue the relationship too long. It is better to find another counselor.

Benefits of counseling

Counseling is helpful if there is a need for the child or family to gain a greater understanding of the disorder, accept the diagnosis and treatment, regain a sense of control over one's own life, or talk to someone about concerns. Counselors can help in a variety of ways. For some children and adolescents, understanding their epilepsy may be most important. They often have common fears and misunderstandings that go unaddressed. Fear of dying or serious injury during a seizure is a fairly common hidden concern, but children often will not bring the subject up to parents or doctors, because they are too frightened, shy, protective of their parents, or do not know how to ask the question.

The relationship of stress to seizures is poorly understood, but seizures often are more common during or shortly after stressful times. The counselor can help to identify sources of stress, such as family or school problems. Simple techniques of stress management can be helpful, even for a child.

Poor self-esteem may be an obvious concern or an undiscovered problem. The parents and teachers of children with epilepsy may see them as "doing remarkably well," but deep inside, the children may remain insecure and have low self-esteem. To protect their parents and their own image, they may hide their feelings or overcompensate. Although this may be the exception rather than the rule, parents and others must look beyond what they want to see. Counselors can identify home and school situations and issues that have an impact on the emotional well-being of children with epilepsy.

Friendships

Children with epilepsy should be encouraged to pursue friendships and social activities like other children. Perhaps the most negative effect of epilepsy on children is the isolation and rejection that may accompany the disorder, often unnecessarily. Vigorous pursuit of regular social activities is the best protection against negative social effects and is important for normal intellectual and behavioral development.

A child must be given independence to pursue healthy friendships. Parents may face conflicting desires: they want the child to play with other children and they also want to protect the child from danger. Such conflicts are inherent in parenthood, but are exaggerated for parents of children with epilepsy. Physical injury can be caused by seizures and parents are often the best at recognizing a seizure and protecting their child. However, the emotional trauma of isolation is probably more painful and more long-lasting than a seizure-related physical injury.

Many parents would like their child to be more active in friendships and social activities but find that the child is fearful of rejection or that the opportunities are limited. The social activities of some children are limited by other neurological and emotional disorders. For these children, community programs and networking between parents can be helpful. It also can be beneficial for children to meet other children with epilepsy through camping or similar programs available through the local Epilepsy Foundation affiliate.

Going to camp

All children with epilepsy can enjoy camp. Those with well-controlled or occasional seizures should be able to attend a regular camp. The range of activities and precautions must be individually specified, but these children can usually enjoy a very full and active camp experience.

Children with frequent seizures, or children who have never met another child with epilepsy, may benefit from going to a camp with other children who have epilepsy. The Epilepsy Foundation provides information about these camps, some of which include educational sessions on epilepsy for the children.

Some camps specialize in programs for children with severe epilepsy, cerebral palsy, or emotional disorders. They provide a wonderful social opportunity for the children and an important respite for parents.

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