How parents can support the siblings of a child with epilepsy

In part 1 of the Standing By Siblings blog series, I introduced how siblings of those with epilepsy have their own unique circumstances and needs. I explained the importance of parents striving to support siblings as they grow up. 

Here, I aim to provide tips and guidance to parents based on my personal experiences. 

My first four tips for parents are centered around helping your child to both understand and feel understood within the circumstances they are in: 

1. Things become less scary or mysterious when they’re explained.  

Kids are smart and curious. Though a child may be young, they deserve to know about the struggles that their sibling is dealing with. Make sure the child knows what epilepsy is, why their sibling may have to go to the doctor more often, and how they can help respond to a seizure. Using kid friendly terminology to explain these topics can make it easier for difficult information to be absorbed. Take the time to explain why you may be busy helping the other sibling, but that does not mean you care about them any less. It can be helpful to consistently tell them that at times, their sibling may need a little extra help to make sure they are okay. Allow your child to ask questions and approach them nonjudgmentally. Check out online resources that explain epilepsy from a kid’s perspective.  

Here is one video that I like:  

The understanding that no one deserves to be treated poorly for a disability comes along with learning about them. Explaining epilepsy effectively can help your child, as well as their friends, grow up to become even more respectful, accepting, and kind adults. This attitude can help encourage them to want to watch out for and advocate for their sibling.  

2. Acknowledge their feelings and tell them it is okay to feel that way  

There is no doubt that any kind of medical issue causes stress, worry, and a variety of other negative emotions. Your child may be scared if their sibling had a severe seizure or needed to go to the hospital. They may feel angry if someone makes fun of them or their sibling because of their sibling’s diagnosis. They can be frustrated that pre-organized plans had to be interrupted because of an emergency. Kids need to know that they shouldn’t have to hide their feelings to make it “easier” for the family. They should be told that it is okay to feel this way and show them healthy ways to deal with emotions. 

During scary moments, reassure your child that you are doing everything you can to help the sibling, that doctors are smart, and that their sibling is strong and brave. Ask them questions too – check in with them to see how they are feeling if they are not usually one to open up on their own. 

3. Although their help may be needed, remember that the sibling is not another parent  

I know firsthand that caring for my own sister can be a team effort. Especially when a sibling has severe epilepsy or other complicated medical conditions in addition, parents may need extra help in ways that are not typically expected of a sibling. From my own experience, this can include watching their sibling and responding in case they have a seizure, keeping track of how long a seizure lasts/how many occur, or taking care of the house during an emergency. Due to my sister’s cerebral palsy and need for tube-feeding, I tend to also help lift her, prepare her food, and make sure she is positioned correctly.  

But a sibling’s childhood should come first. They should never be made to feel that caring for their sibling is their responsibility or feel guilty if there is something they do not want to do. Children deserve boundaries too, and a lack of negative associations with helping may make them more inclined to happily choose to do more in the future. Having my feelings respected has helped me to learn to have a sense of pride in being able to help my sister, and I believe it has created a stronger bond between us as I watch her thrive. 

Over time, I have become more comfortable with helping out when needed. When my dad was recovering from knee surgery or when my mom was dealing with severe leg pain, they physically needed more help to care for Livy. I stepped in to provide more support. They have remembered to check in on me to make sure I was alright with what I was doing and if I needed anything to change. 

When siblings do help, make sure to thank them and tell them what it means to you and their sibling. 

4. Kids are kids 

Know and expect that your child will not react to some things the way an adult would. Have patience with them and try to think through their perspective. It is likely that you did not grow up with the same experiences that they are going through with their sibling, and acknowledging this can help to create more understanding and forgiveness between you. They are still learning about bigger ideas and how the world works. Depending on their age, they may look at things very differently, having their own understanding of fairness. How you act with them now will greatly influence their future. 

So much of this relies on making an active effort to communicate with your child and being present in their life. You as a parent have the opportunity to pave the path for a positive and caring relationship between your children throughout their lives. 

Stay tuned for the last part of this blog series and thank you for reading!