You Are Not Alone: Brochure

Download the brochure [PDF–159K]

Consider reviewing this brochure with your spouse, partner, or other family members and discussing how parenting a teen with epilepsy has affected the family as a whole and each individual family relationship. Together, make a plan of action for nurturing your relationships and yourself. Base the action plan on goals that you set together. If you have never attended a parent support group meeting, seek one out either close to home or online.

As parents, it seems we never stop worrying about our children. And when they finally reach adolescence, the risks seem endless. Although our instinct is to protect them and anticipate any harm that might come their way, it becomes increasingly difficult when our children are living with epilepsy.

As teens, their job is to break away from us and become their own persons. And ours is to let go and watch from a distance. Because we can’t be with them 24/7, this letting go process can be a time of stress and constant worry.

Before we know it, we are spending all of our time concerned about this one special person. And our other relationships are beginning to suffer. Before too long, we feel isolated and so do the people who love us. To feel reconnected and regain the strength it takes to let go, it’s important to reach out to others.

Reach Out to Your Spouse

We all know what happens when we become parents. Once a romantic couple, our relationship becomes redefined and we become co–parents. Add to that the challenges and fears of raising a child with epilepsy, as well as the different ways we react to stress and the divide increases. To bridge the gap, we must make a continued effort to reach out to our partners.

• Take time at the end of the day to talk about something other than your teen.
• Never go to bed angry.
• Remember what attracted you to each other in the first place.
• Make a date to go out together at least once a week. Make that date sacred.
• Find someone you can trust as a back–up in the event of an emergency.

Reach Out to Your Children

A teen’s epilepsy affects the whole family. If your teen has brothers or sisters, chances are they worry about their sibling as well. And when they are not worried, they may be feeling a bit resentful that they aren’t getting as much attention. Complex as these emotions are, they can all be eased by openness, love, and attention.

• Make listening to each of your children a priority. Talk about their feelings.
• Spend some time, even just 10 minutes, alone with each child each day, or create special one–on–one time with each of your children on a consistent basis.
• Find something special to celebrate individually with each child.
• Have positive answers for “I hate her” or “You love him more than me.”
• Help your children learn to be advocates, react to the stigma that still faces their sibling, and educate others about the condition.
• Carry a cell phone so that your spouse and kid(s) can reach you if they need to.

Reach Out to Other Parents

There are more than a quarter of a million parents in the United States going through a similar experience—they have a teen living with epilepsy. Like you, these parents and their families have faced challenges along the way, and most are happy to share their stories. Through support groups, you can meet parents and learn about the strategies and tips that have worked for them. Contact the Epilepsy Foundation to find a support group in your area. Or ask them about organizing one of your own.

• Attend a parent support group or consider joining an online forum.
• Start a parent support group if one is not available in your area.
• Participate with other parents in an annual Epilepsy Run/Walk that raises awareness.
• Share with other parents tips, ideas, and strategies that have worked for you.

Reach Out to Yourself

As parents, our own needs always seem to come last. But we can’t keep giving if we don’t have the time to replenish ourselves. Giving all that we can to all of our loved ones means taking care of number one first. Here are some basic tips

• Schedule time for yourself each week—a walk in the woods, read a book, take a yoga class, get a new look, or even go bargain shopping.
• Take the time to do something that makes you happy.
• Stay in touch with yourself. Keep a journal in which you can express feelings and thoughts.
• Continue to grow and reach your potential—whatever it takes.
• Try to eat healthfully and stay physically active to prevent chronic disease.
• Look your best. Although it takes energy, it also feeds your spirit.
• Remember who you are. Look at old photos from before you got married and had kids.