For Parents and Caregivers of Loved Ones of All Ages Living With Lennox-Gastaut Syndrome (LGS)

When you care for a child with LGS, no matter how old they are, your day-to-day life may look different from other peoples’. It can require flexibility and extra planning. Here are some tips that may make your life as a caregiver a little easier.

Allison, 21, with her dog

Children of All Ages Hero
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Allison, 21, with her dog

Tips to Support Living Day-to-Day With LGS

These ideas come from other parents and caregivers who know what it’s like to have a child with LGS

Canine Assistants is one of several organizations that trains and matches service dogs, including seizure-response dogs, with families. Their dogs:

  • Are trained to stay next to their companion during seizures
  • Have been taught to get help, if it's available
  • Can sometimes predict and react to seizures before they even happen

When you have a child with LGS, the addition of safety equipment could be a game changer. Some of these resources can be expensive, but don’t let this discourage you. Finance options are available, not to mention organizations like The M.O.R.G.A.N. Project, which has an equipment exchange program that “[connects] parents who need things with parents who have things,” including wheelchairs, beds, and ventilators.

Mealtime can be stressful for any caregiver, let alone one caring for a loved one with LGS. One caregiver in our community swears by using nap times to prep ingredients so there is less work to do once everyone is hungry. She also said that creating a weekly meal plan makes her feel more in control when dinnertime comes around. If grocery shopping is an added challenge, consider ordering groceries to your house or subscribing to a meal-kit service that comes with pre-portioned ingredients and step-by-step recipes.




Fun Family Activities

Take a trip to the park

Spend the afternoon at the playground or just take a stroll around the grounds. The park is a great place for the family to bond and get some fresh air together.

Arts & crafts

Who doesn’t love to get creative? Children with LGS may need extra help completing their project, so this is a great activity to get siblings involved in, too.

Listen to music

Take turns playing your favorite tunes! Not only is it a great form of self-expression, it might just break out into a dance party!

Read a book together

Get cozy and pick out a new story. As a caregiver, you can read out loud while your loved one follows along.

Sign up for a dance class

One of our Shine Forward With LGS caregivers says her son loves his all-abilities dance class. It’s the highlight of their week!


Special Olympics has swimming programs for kids of all ages.

Watch a favorite show

Whether it’s the start to your morning or how you end your night, putting on a favorite cartoon or TV show is a great activity for siblings to enjoy together.

Play pretend

Has your loved one always had a passion for astronauts? Let them pretend to be one for the day! This will help encourage creativity and make lasting memories.