Helping Kids, Teens and Young Adults Face the Social Issues Related to Epilepsy or Seizure Disorders

We strive to be available to anyone who is facing difficulties associated with epilepsy, but realize that as an adult who is a part of a child’s everyday life — as a parent, a teacher, a coach, a mentor, school administrator, healthcare professional or friend — you are in a better position to support a youngster who is struggling with social or emotional issues.

Our hope is that this site will give you the insight, information and resource materials that you’ll need to help youngsters face the social situations and emotional stress that is so often associated with being a child, teen or young adult who has epilepsy.

Supporting a child who is trying to figure out who should know about his/her epilepsy can be difficult. We believe that if you follow the steps outlined below as a guide, you’ll be better prepared to assist a youngster who has epilepsy or seizure disorder.

Step One — Recognize and Accept the Fact that Epilepsy and Seizure Disorders are as Unique as Each Youngster Who May Have a Diagnosis of Epilepsy/Seizure Disorder.

There are virtually no generalizations that can be made about how epilepsy or a seizure disorder will affect a youngster. How one child reacts to a particular treatment can be very different from how another will react. The impact of seizures in a child’s life will also vary greatly. There is often no way to accurately predict how a child’s abilities, learning and skills will be affected by seizures.

The most important thing to do when working with a child who has epilepsy or a seizure disorder is to attempt to get to know the individual child and his/her medical condition. This information should come from the child’s parents and the physicians working with the child. It is particularly important to gather information from the child’s physician before any limitations are placed on the child’s activities. Most children who have epilepsy will have absolutely no limitations placed on their level of activity.

Step Two — Recognize the Fact that Stress Plays a Big Role in the Life of a Child Who Has Epilepsy or a Seizure Disorder.

Most people who have epilepsy or a seizure disorder cope with a great deal of stress and anxiety associated with their medical condition. This is the case even for patients who seem to have successful treatment for their epilepsy and have gained control of their seizures. Because a child, teen or even an adult with epilepsy can neither predict when a seizure might occur nor control a seizure when it does occur, they often experience stress, anxiety, fear, anger and even depression as a result.

This stress often also extends to the family. Many parents, siblings and other family members face anxiety about the child’s epilepsy, and this can sometimes lead to a tendency toward overprotection and in some cases isolation from their peers.

Youngsters often respond to this fear and anxiety with anger, resentment or denial. Recognizing and helping children and teens to cope with these strong emotions is one of the most important things any adult can do to help a youngster who has epilepsy or a seizure disorder.

Step Three — Try to Imagine the Child’s Perspective.

One of the primary concerns young people have is whether they are accepted by their peers. Kids, especially teenagers, don’t like being singled out and definitely don’t want to be labeled as “different.”

Can you imagine how “different” a young person must feel after he or she has experienced a seizure in front of their friends or classmates? Can you imagine what it must be like to live with the uncertainty that is the very nature of epilepsy or a seizure disorder? Think about what it must be like to live life on a daily basis with the fear that you could have a seizure anywhere, at any time, in front of anyone. Can you imagine what it’s like to live with the uncertainty of not knowing what really happens when you are having a seizure or how the people around you will react if you do happen to have a seizure in public?

Add to this the stress of just being a kid or a teenager and thinking about the social issues you’re facing — your relationship with your parents, peer pressure, maybe getting a job, friends, dating, driving, college and adulthood.

No matter how well adjusted or how well a youngster’s seizures are controlled, stress is a part of their life and they need help to handle it appropriately.

Step Four — Help the Child Find Answers to the Questions They Face Each Day.

Children and teenagers affected by epilepsy often have a lot of questions about how their seizure disorder will impact their life. Common questions they may have include:

  • Who should I tell about my epilepsy?
  • Can I get a driver’s license?
  • What about dating?
  • Will the coach kick me off of the team?

Your responses to these questions and others can help the youngster feel more comfortable, both with their own seizure management and with any adjustments that they may need to make in their school and social lives. Offering them your own unconditional acceptance and support is a great place to start. Encouraging them to live their lives as fully as they are able — by participating in extracurricular actives, sports, hobbies, and social functions — lets them know that you believe they are capable of and entitled to living an uncompromised life. By setting a positive tone, you will be modeling a healthy outlook for the young person which they will most likely imitate.

Encouraging the child or teenager to talk about their epilepsy with the people in their lives — their friends, classmates, teachers, coaches, and other trusted adults — will benefit them in several ways. First, by making others aware of their seizure disorder, the young person will help ensure that the people they see every day will be ready in case they ever happen to be present when a seizure occurs. This means that the appropriate first aid steps will be taken, the seizure will be handled correctly, and the bystanders will not panic. Second, by raising the school’s and community’s awareness of epilepsy, the youngster will be erasing the myths, fears, and misconceptions that too many people still harbor about seizure disorders. When they are given the facts, most individuals become much more accepting and supportive of people who have epilepsy. Third, the youngster’s self-esteem will also improve as they realize that they are being proactive in their own seizure management plan, and they will gain confidence from the support they will undoubtedly receive from the individuals they tell.

Your support of the young person is critical to their own adjustment to their diagnosis of epilepsy.

Step Five — Refer the Child and/or Family to the EFWCP.

The EFWCP is also here to work with the young person to answer their specific concerns about who to tell and how to tell them, as well as other concerns about how epilepsy might impact their social lives. Encourage them, if age appropriate, to give us a call and talk over their specific situations with us. We will work with them to find the answers for which they are looking.

The following is a list of some of the EFWCP resources and programs that are available to children, teens and young adults who have epilepsy or seizure disorders.

An annual Teen Getaway is available to children ages 13 — 17 years. This event is a weekend, overnight program where teens can come together to learn more about strategies for managing epilepsy in their lives.

Camp Frog is a nationally recognized overnight camping experience for kids in grades 4 — 12 who have epilepsy or seizure disorder.

Project School Alert staff is available to assist children, teens and young adults who may be interested in sharing information about epilepsy with their schools, community organizations or friends.

Family Services staff is also available to work one-on-one with any youngster who is looking for emotional support, advice, information, advocacy services or assistance.

All of these services are free and can be accessed in person, via our website or by calling one of our toll free telephone lines. In western Pennsylvania, call 800-361-5885. In central Pennsylvania, call 800-336-0301.

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