Lennox-Gastaut Syndrome (LGS): A Dad’s Guide

“There’s a time as a father where you have to realize that there are things you’re not going to be able to do. It doesn’t mean that you can’t try to do new things—whether it’s ride a bike or play basketball or go for a ride or go for a hike, whatever it might be—but you need to let your son or your daughter with LGS show you the way.”

– Jeff, father of adult son Dan

Although no two fathers react to their child’s LGS diagnosis in the same way, one thing is certain: their emotions—denial, anger, grief, or others—are powerful. In fact, research suggests that fathers are affected deeply. However, with time and understanding, some fathers have been able to regain a sense of control.

Tips for Dads

Fathers dealing with an LGS diagnosis have shared the following advice: 

• Accept Your Feelings. You can’t just pretend everything is OK. Anger. Fear. Frustration. They’re all normal feelings to have. Accepting and working through them is an important part of coping
• Divide and Conquer. You don’t have to go it alone. Caring for a child with LGS takes a team effort. Look for ways that friends, family, neighbors, and community members can support you and your child—most people will lend a hand if you suggest specific things they can do to help
• Talk it Out. Whether in person or online, talk to other fathers or families who have a child with LGS. Facebook.com/LGSTogether is a great way to get connected
• Keep the Love Alive. It’s not always easy to find time, but make the extra effort to take your spouse to dinner or get together with your friends. You’ll be amazed at how recharged you feel when you connect with other people you love and who support you
• Find an Outlet. Remember to take some time for yourself, too. No matter how rewarding it is to care for a child with LGS, it can also be exhausting, stressful, and emotionally depleting. Making time to rest, relax, and recharge is a necessity, not a luxury. If you’re able, physical activities are an especially good way to blow off steam and clear your head