Ideas for Lennox-Gastaut Syndrome (LGS) Mini Celebrations

Resetting Expectations

Often, the best joys in life are the little things. Watching your loved one with LGS laugh and take part in activities they enjoy are moments to treasure. Sometimes that means resetting expectations and learning to accept and take pleasure in what life is rather than what it should be.

Creating Special Moments

Here are a few examples of how other caregivers have created special moments with their loved ones.

Go Along for the Ride

“Spencer loves to ride escalators, so we’ll go to the mall with her and ride up and down the escalators. She also loves to ride in the carousel. She just gets a kick out of it. She likes the music and the motion.”

– David, father of young daughter Spencer

What you can do: Visit a playground in a different neighborhood or take a train ride to a neighboring town and play “I Spy” along the way.

Think Outside the Box

“When it comes to special occasions, I’ve learned to follow Theo’s lead. For example, I had to realize that the birthday parties and all the grand gestures I do for my other kids, just isn’t important to Theo. For him, a really fun birthday is just going to a park! He just wants to walk around and lie in the grass and feel the sun on his face. At Christmastime, after all the gifts are opened, Theo just likes to roll around in the paper and have a good time!

– Jennifer, mother of teenage son Theo

What you can do: Get your creativity flowing and get messy! Make edible finger paint with a little condensed milk and food coloring or build a “fairy house” outside with sticks, pinecones, and other natural materials found outdoors.

Set the Stage

“In spite of Andrew’s disabilities, we’ve done a lot of cool things as a family. Actually, a lot of what we’ve done together is because of Andrew. We’ve gone to the National Walk for Epilepsy in Washington, DC, and to shows at our local theater!”

– Rachel, mother of teenage son Andrew

What you can do: Make a movie of special moments that you have recorded of your loved one and yourself, or create a unique story using puppets or props found around the house. Your loved one will enjoy being the star of the show!

Gather ‘Round

“Elizabeth likes to help me set the table. That’s one of the big things she likes to do. She says it’s fun.”

– Lucinda, mother of teenage daughter Elizabeth

What you can do: Invite a few friends or family to visit. Host a meal or eat some ice cream. Celebrate the joy of just being together. 

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