For Parents and Caregivers of Teens and Adults Living With Lennox-Gastaut Syndrome (LGS)

As your loved one transitions to adulthood, there will no doubt be both joys to share and challenges to overcome. Some of those challenges may be unique to LGS, so it’s especially important to know what to expect. Being prepared will help you feel more empowered for when that time comes.

Allison, 21, with her mom

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Allison, 21, with her mom

Tips for Transitioning to Adulthood

In time, your child may need to transition from pediatric to adult care, which you can plan ahead for. The transition to adult care is a great opportunity for new doctors to re-evaluate your loved one’s treatment plan. Luckily, there are transitional care programs in place to help support families making the shift from pediatric to adult healthcare systems.

Check Out Additional Transition Resources Here

Did you know that when your child turns 18, laws of guardianship change despite their having LGS? Make sure to check your state's website for information specifically relating to your family.

There may come a time when you are unable to fully care for your loved one with LGS. It can be hard to come to terms with your child not living with you, but by planning in advance you can have peace of mind knowing what’s available and which facility is the best fit. You don’t have to start this process alone. There are local agencies and case managers ready to help you discover options available near you.

An important part of the transition process is financial planning. The LGS Foundation provides resources to help you get started. You can find them here.




Fun Family Activities

Play board games

A board game is a great way for your child to interact with others while enjoying time with the whole family.

Participate in Special Olympics

By engaging with groups like Special Olympics or similar programs for adults with LGS, your loved one will have a new way to socialize, which can help them be better prepared for their future ahead.

Movie night

Vote on a movie the whole family will enjoy! Grab some popcorn and enjoy the time together.

Cook a meal

What's on the menu tonight? Making even a simple meal together can develop independence as well as create a bonding moment for those involved.


Music is a favorite in our community. Sitting or standing, dancing may be the perfect way to unwind!

Explore your community center

Most community centers have activities and events for those with special needs. Check yours out, and your loved one just might find a new hobby.

Go for a group walk

Does your loved one enjoy being in nature? Even a short walk outside can get the family in one place after a long day.

Take a trip

Whether it’s a day trip to the zoo or a cruise to a tropical destination, planning a trip might be the refresh everyone could use!


Lennox-Gastaut Syndrome (LGS) Foundation logo

Are you a parent or caregiver of an adult living with LGS? The LGS Foundation has a monthly support group for community members just like you. Join to discuss and navigate the unique struggles when caring for an adult living with LGS.

Learn More