Lessons From the Lennox-Gastaut Syndrome (LGS) Community

Lessons Learned

Moms and dads who are doing their best to care for a child with special needs have a lot to offer others. Parents of children with LGS weighed in to offer a few tips based on what they’ve learned along the way.

Define Your Role

"My role, I guess, if you could call it that, would be to be there for my wife, Jane, to give her the break because it becomes overwhelming. I have to be able to be there and have Micaela for a period of time to let her have some time to do something else."

– Mark, father of adult daughter Micaela

Rest and Recharge

"I think you need to have time to recharge your battery to come back to your child with special needs. I would never presume to tell anyone how they should live their life, but I do know from my own experience that I can help Theo best and be around Theo when I’ve rested and I’ve taken care of myself to make sure that I’m there to give him all the attention."

–  Alex, father of teenage son Theo 

Maintain Friendships

"To keep sane, for myself, I like to go out with my girlfriends. I like to go grab a cup of coffee, or maybe go out to dinner with them, or even go for a walk. You need that time to regroup and come back full of energy to tend to your loved one with LGS."

– Kelly, mother of young daughter Isabela 

Stay Strong as a Couple

"We have to stay strong as a couple to make sure that we stay strong as a family and support Dan. So Jeff and I set aside time for ourselves where we go to a movie or a sporting event or something we both enjoy. We prioritize time together as part of what we need to do to be able to maintain our relationship and have fun."                                                 

- Karen, mother of adult son Dan 

Have a Positive Attitude

"A positive attitude is a big thing. You have to continue to go on with life and continue to do the things you want to do."

– Rachel, mother of teenage son Andrew

Slow Down and Listen

"We learned to slow down and listen to what Elizabeth had to say because what she had to say was important, too."

 – Lucinda, mother of teenage daughter Elizabeth 

Live in the Moment 

"We don't worry so much about what's going to happen next because we've handled so much in the last 9 years that we can handle anything."

– Elizabeth, mother of young daughter Spencer 

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