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ContinueKlohe loves animals. She loves outside. She loves hiking. She loves the water. Absolutely loves the zoo.
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 train and match 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 can be a game changer. Some of these resources can be expensive, but don’t let this discourage you. The Elevate Patient Assistance Program from the LGS Foundation provides financial assistance so those with LGS can have necessary medical equipment that isn’t covered through insurance, such as wheelchairs, helmets, communication equipment, and seizure alert devices.
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 preportioned ingredients and step-by-step recipes.
Advice From a Caregiver
What I like to tell people is... we just do activities modified. I always give the example of the workout videos. There’s always that person in the video that can’t do the exercise the same way as the other person.
—Carmen, Corey's mom
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!
Swimming
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.
I like him to learn some independence. And so, we created a cookbook, three-ingredient meals called Corey's Cooking. And it's just those things, three ingredients that you would normally have in your house.
Find information on how to start building a care team that is personalized to your loved one
Get support and inspiration from other parents and caregivers from Shine Forward With LGS