How parents can support the siblings of a child with epilepsy

I recently described to parents how education, communication, and understanding are necessities for siblings of children with epilepsy in the Standing by Siblings blog series. 

In this blog, I highlight more tips to parents based on my personal experiences! This final part of the Standing by Siblings series focuses on making sure your child feels included while still being urged to celebrate their own uniqueness:

1. Make the sibling feel like they have an active role in the family  

Remember to ensure your child is not being left behind. Though their sibling with epilepsy may need the extra attention and help that they are receiving, you should make it clear that every child in your family is equally important. Do not make promises you feel you can’t keep or assume that your child is doing just fine on their own. 

As your child ages and comes to understand their family circumstances more, keep them in the loop and let them give their input on family decisions when able. This can create mutual respect and understanding. Whenever my parents decided to change one of my sisters’ medications, they told me so I would know why they needed to be extra attentive of differences in seizure activity. I’ve been made aware when a different nurse than usual would be coming to our house. When they hired a new at-home therapist, I was asked how I felt about having a new person around more frequently. This helped me feel that they were being mindful of my concerns, opinions, and personal space. 

This advice also applies to the child having an active role in the life of their sibling. I have always felt so close to my sister because of our time spent together. I know that Livy’s diagnoses are just one part of her life, and I admire her strength. I love nothing more than to make her smile. Although my sister has conditions in addition to epilepsy that prevent her from doing many activities with me, I know how much she loves music, movies, stuffed animals, and cuddles. If your child’s sibling is similar to mine, encourage them to find activities that, though may not be the way they play with other friends, are uniquely enjoyable between them.  

2. Have activities and traditions unique to the sibling  

I have discussed the fact that attention to your child’s sibling with epilepsy may have to come first, and I am not expecting parents to magically make more hours in the day to devote to each child. Sometimes it must be about quality over quantity. Make sure that there is something that your child can consistently rely upon you for as much as you are able to. This creates trust, connection, and a sense of something special just for you and your child.  

Although my sister needs around-the-clock care on top of seizure emergencies, I did not often feel discouraged about my relationship with my parents. I held a sense of trust in them that they wanted to spend time with me and that they would again soon. My dad and I regularly went to a specific pizza place and always ordered pink lemonades together. We still go to the last local baseball game of the season each year to see the firework show. My mom and I have had specific tv shows we watched together, and we make crêpes on Saturdays. Moments like these allow me to look back at my memories very fondly. All of us recognize that these activities are important to us and have helped to build our close relationships over time. Even if they are small, they matter greatly to a child. 

3. Encourage building up their own identity  

Be interested in and support your child’s passions. Think through your conversations and make sure you take a break from medical discussion around them. Talk with them about their future. Show them that you are just as invested in their journey and that their own challenges are just as valid as their sibling’s.  

Pay attention to your child’s extended support systems. Who else do they have to communicate with and share their feelings? What is their relationship with their friends, teachers, mentors, other family members, etc.? Encourage your child to spend time with others who positively impact them. 

Personally, my extended family and my teachers were the backbone of my outside support. They made me feel safe and never alone. I was also always told that I could find worthwhile friends based on the people who instinctively treated my sister with kindness. This advice has made me a better judge of character, helping me to seek out and stick with those who act nonjudgmentally and with empathy.  

4. Never forget to show love  

This point seems obvious, but I very much want to mention it. Despite any arguments, frustrations, or misunderstandings, at the end of the day your child should feel like everyone is on the same team.  

Remind them how much you love them and how much you appreciate their understanding. Create an environment where they feel safe to communicate with you and know you will approach them with kindness. Also, lead by example and treat your child with epilepsy with the love you would want their sibling to show them. 

Not every sibling of an individual living with epilepsy is the same as me or will react in the same way. But fundamentally, we want to feel valued, connected, and loved. I have prioritized being close with my family while also being confident in my own identity.  

I want to extend my appreciation to parents raising a child with epilepsy and everything they do to care for each of their children. Your efforts matter. I see how hard you work and everything that you give. I hope that my experiences can help other siblings like me and bring your family closer together. Thank you for reading!