Epilepsy Camps Can Bolster Self-Management Skills

Summer camps can provide children and teens with an opportunity to spread their wings and gain valuable skills in a safe and nurturing environment. For kids with epilepsy and their parents, however, camp can also be a source of anxiety.

Sandra Cushner-Weinstein is a licensed physical therapist and clinical social worker at Children's National Health System and is the director and founder of Brainy Camps, a group of residential camps, family camps, and programs for children with chronic health conditions. She is an advocate of condition-specific camps for children who have epilepsy. She is also a member of the Professional Advisory Board for the Epilepsy Foundation.

We interviewed Sandy about her experience with camps for children with epilepsy and their impact on families too.

What are some of your reasons for starting a camp for children with epilepsy?

• Kids and teens with epilepsy felt isolated and worried.
• Parents of children with epilepsy were concerned that their kids did not have friends and withdrew from peers.
• Many parents tended to overprotect their children. It was hard for parents to let their kids go.

Learn More

• Parent & Peer Relationships
• Participating in Camp Activities

How do children with epilepsy benefit from camp experiences?

• Both children and their parents can benefit from condition-specific camps. These camps are designed to empower youth while being safe. They address their health and/or special needs, while offering opportunities to learn about their health condition and become leaders.
• I believe in the power of peers and groups. A lot of the kids benefit from the support networks and daily groups. The camps help build teams.

The camps provide opportunities for the children to gain some independence and connect with doctors, nurses, and other care providers. These experiences help kids do the following:

• Learn self-management skills
• Broaden their perspective and cope better with their condition
• Spend time with peers who share the experience and meet mentors
• Help parents and their kids shift the way they think of living with a chronic health condition

Can you share some examples of how camps help?

One parent told me how the epilepsy camp, Great Rock of Brainy Camps, helped her daughter:

“The experience was truly transformational for my daughter. While she intellectually knew there were others with epilepsy, it wasn't until the camp that she was with other children with epilepsy. Before camp, she felt so alone with her epilepsy. At camp she learned other kids shared her feelings. She saw other kids deal with different types of issues related to epilepsy, and it helped her understand her own seizures. It was also the first time she saw someone have a seizure. She choked up telling us and, although she was shocked at first, she got used to recognizing seizures. She also saw that the seizures were a very small part of who the boy was and they didn't define him.”

What tips do you have for children with epilepsy and their parents to help make their camp experience successful?

• Make sure you send the correct medications with the labeled bottles and a few extra pills, in case one falls.
• Talk to your children about epilepsy. Some parents send their kids to camp without telling them they have epilepsy. Having seizures is not equivalent to epilepsy. The camp should not be the first time a child hears the diagnosis.
• Prepare your children for camp. Sit down with your children. Ask them what they understand about epilepsy and what they would like to get out of the camp experience. Also, they can ask their child what they feel they need to have the best time ever!
• If the camp is the first time your child has been away from home and he or she is worried about being homesick, normalize the experience and talk about what they can do to check in. The local Epilepsy Foundation hosting the camp can offer good suggestions.

Learn More

• Preparing Camp Staff for Seizure Management
• Tips to Enhance Camp Participation

How do campers feel about epilepsy camps and seeing others have seizures?

One camper stated, “Camp Great Rock of Brainy Camps opened up a whole new world for me. First, I got to see what other seizures look like. Before the camp, I had never seen a seizure. Second, it made me realize that there are many kids and adults that have seizures just like me and I finally felt like I wasn't the only person that dealt with epilepsy. It was a breath of fresh air knowing I could talk to someone about my seizures, and they wouldn't look at me with a blank stare.”

Another camper said, “Now I know what my parents are worried about.”

For many kids, the first time they see a seizure is among other campers, it can be very frightening. But seeing others have seizures helps them put their own epilepsy in perspective. At camp, almost everyone takes medications together. This helps kids learn about how medications can help and the importance of medications. We see an increase in their willingness to take medications to control their seizures. Medication compliance tends to improve and continue after camp.

At the camps, there are many teachable moments. Once a nurse at the camp, diagnosed with epilepsy, had a seizure in the pool. She was rescued immediately by the lifeguard and watched by the neurologist. Once she was conscious again, she spoke with the worried campers. The nurse let them know that even care providers can have seizures and still work as health care providers! She also offered important tips to the campers, including never swim alone and tell the lifeguard you have seizures.

Why are epilepsy camps a great choice?

For some campers, epilepsy camps provide them with the opportunity to try new things.

• We had one camper who was very quiet and never went into the pool. Her mother explained that her daughter had had a seizure in the pool when she was young and the parents were uncomfortable with allowing their daughter to swim. After seeing other kids with epilepsy at the camp in the pool, her daughter was comfortable enough to try swimming. She is now one of our counselors.
• Parents and children have many anxieties and fears that aren't always based on facts or reasoning. Sometimes what works when children are young no longer works when children grow up and become more independent and better self managers. Adapting systems and making changes that work is part of what makes us resilient.
• Several of our campers have gone on to become camp counselors. They’ve chosen to work in the epilepsy camp as well as other camps. By working in these other camps, they teach kids in the other camps about epilepsy.
• According to one camper, "At my epilepsy camp, I have lots of fun with kids who get it, and I don’t have to worry. While I get a break, so does my mom, and this helps us connect better.”

Unlike general summer camps, epilepsy camps have appropriate staffing and resources to ensure children receive their medications, get needed attention during seizures, and can safely participate in a variety of activities, which may include water sports.

Learn More

• Choosing a Summer Camp
• Evaluating Camps
• Staying Safe at Camp
• Epilepsy and Water Safety