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Your Relationship With Your Other Children
Having a loved one with LGS can affect your relationship with your other children. Engaging in family activities and alone time with your children without LGS can help them feel better supported, which can ultimately help strengthen your relationship.
LGS Impacts Siblings Too
People who have a sibling with LGS learn the importance of being patient and compassionate with others at an early age. They often show a great amount of strength on the outside but can at times be struggling on the inside. A study showed that they also often experience high levels of stress, anxious feelings, and fear. Some common challenges siblings face during their day-to-day lives include:
Feeling Unhappy
Up to 62% of siblings reported feelings of unhappiness
Anxiety
As much as 58% of siblings showed possible anxiety symptoms
Fear
Many of those surveyed, including 79% of siblings aged 9-12, expressed fear that their sibling may pass away
The Siblings' Voices Study was created to measure the emotional impact of growing up with a sibling with certain types of epilepsy like LGS.
Some Ways You Can Help With Sibling Support
Communication Is Key
Come up with a plan on how you want to speak with your child. Write down some of the important points you want to communicate with them, like:
- How are you feeling about your brother/sister?
- Are you feeling okay about how this situation is going?
- Tell me how you are feeling today
Therapy Can Help
Sometimes children have a hard time expressing themselves to their parents. Talking to a therapist can help them cope, communicate, and handle situations in a healthy way.
Set Aside Time for Your Child
Dedicating one-on-one time with your child can help them feel supported and seen. Some tips from other caregivers include:
- Going out for walks, ice cream, or to the movies
- Creating a special tradition together
- Allowing them to stay up late for a night
- Giving them a special treat to show your appreciation
Positive Reinforcement
A positive conversation goes a long way! Encourage your child to ask questions and openly communicate their feelings with you. Use positive reinforcement and affirmations to inspire them to express themselves.
Keep Siblings in the Loop
The experience of having a sibling with LGS can be difficult at times. As a parent, it’s important to talk with your children together and find ways to help them to understand and cope with the situation. Open communication is one way to make sure everyone feels supported. It’s helpful to recognize the effect that growing up with a sibling with LGS may have on them. Those who are kept aware of what is happening with their loved one with LGS have been shown to be more aware of their feelings and happier.
Understanding LGS Can Help Lower Depression and Anxiety
Up to 76% of siblings who understood the basics of epilepsy or who had helped during a seizure reported being in better moods.
Knowledge of Their Sibling's Condition Can Bring Comfort
Up to 86% of those who were informed about the status of their sibling's condition reported feeling more comfortable talking about it with other people.
When your child with LGS has a seizure, it’s important to know what exactly makes their brothers and sisters most comfortable. Some might want to get involved and help you, while others might want to distract themselves by being in a different room. Talking together and creating a plan in advance rather than when a seizure emergency is actually happening may help them feel better prepared.
Create Your Own Seizure Action Plan Today
Conversations With Siblings About Future Care
Some conversations are tough to have when you don’t know where to start, especially when it comes to talking to siblings about the topic of long-term care plans for their brother or sister with a rare epilepsy. Here are some tips from caregivers to help you through the discussion:
- Set clear expectations: Start the conversation with the caveat that the caregiver doesn't expect the sibling to be the full-time caregiver
- Be transparent about the process: Explain that the family needs to think about what the future looks like, but that the sibling does not have to personally be the one who is providing the care or making the decisions
- Take your time: It’s best to have multiple smaller conversations over time. This approach can help keep the sibling from feeling overwhelmed
Get support and inspiration from other parents and caregivers from Shine Forward With LGS