Matias, 5, with his brother

Tips and Tools for Siblings

Having a brother or sister with Dravet syndrome can be stressful at times. Siblings may bottle up their emotions and not want to share their feelings. Some may even hide how they’re feeling to avoid adding more stress for parents or caregivers caring for their sibling with Dravet syndrome. If you’re wondering how you can get your child who does not have Dravet syndrome to open up, some of these ideas from other parents and caregivers could help.

Tips and Tools for Siblings

Having a brother or sister with Dravet syndrome can be stressful at times. Siblings may bottle up their emotions and not want to share their feelings. Some may even hide how they’re feeling to avoid adding more stress for parents or caregivers caring for their sibling with Dravet syndrome. If you’re wondering how you can get your child who does not have Dravet syndrome to open up, some of these ideas from other parents and caregivers could help.

A child with Dravet syndrome sitting next to his brother
Matias, 5, with his brother

Communicating With Siblings of All Ages

 

Plan the Conversation

Is there a place or an object that makes your child feel especially safe? Think about when and where your child will feel the most comfortable. Then come up with a plan for how you’re going to say what you need to say. Having something written out in advance will help you feel more prepared. Here are some conversation starters:

  • “How do you feel about your brother or sister with Dravet syndrome?”
  • “Can you draw how you are feeling today?”
  • “It’s OK for you to feel the way you feel. Let me tell you a story about a time I felt the same way.”

Get on the Child’s Level

When having a conversation with a sibling of someone who has Dravet syndrome, try positioning yourself at the same eye level. This allows you to see each other eye to eye, which may help your child feel more comfortable opening up.

Ask How You Can Improve

Feedback helps everyone get better. You let your child know how they’re doing with chores, so it may be a fun treat for your child to let you know how you’re doing as a parent. Try asking them what you can do better. Openly talking about how you’re doing in relation to their individual needs can help you make sure you’re giving them the attention they deserve.

Keep It Positive

When talking with your child, try to keep your conversation as easy-to-understand and positive as possible. Encourage your child to ask questions and be honest about their concerns or fears. Try not to criticize them if they say something mean. Explain why it is important to think of others’ feelings.

Express Your Gratitude

Letting your child know how much you appreciate every little way they help out can be meaningful. That’s because it can make your child feel recognized and important! Giving your child something that feels more official, like a thank you letter or badge of honor, could go a long way, too.

Give Them a Role

Many siblings of children with Dravet syndrome want to be involved in the care of their brother or sister. Consider giving them an age-appropriate task that they can do to help. Whether it’s grabbing a blanket or writing down the time a seizure started, giving the sibling something to do can help them feel more involved.

Sign up to receive the Seizure Planning Tool—a great way for you to make a plan with your child without Dravet syndrome so they know what to do when their brother or sister has a seizure.

Talk to a Therapist

Sometimes children have a difficult time discussing their feelings with their parents. By seeking out a school counselor or therapist, your child has the opportunity to express his or her feelings to a neutral party with no connection to the family. Therapy can also help them cope, communicate, and handle situations better. Many child therapists will start play therapy with children as early as 3 or 4 years old.

Every child is unique, especially when it comes to talking about how they feel. Share your tips about how you’ve started conversations with your child to help other parents and caregivers connect more with their children.

Encourage Outside Interests

Encouraging your child to have interests and activities outside the family home is a great way to provide “me” time for your child. Even if it’s as simple as spending time with a friend or having a sleepover, having activities that they can do on their own and away from their sibling with Dravet syndrome can really help.

Keep Siblings in the Loop

Educating your child about Dravet syndrome can actually have a positive impact on their mental health. Studies show that when siblings are knowledgeable about seizures and feel that they know how to help their brother or sister with Dravet syndrome, it can emotionally help improve relationships throughout the family.

Up to 86% of siblings felt more comfortable talking about their siblings’ condition.

Up to 76% of siblings showed signs of lowered anxiety and depression.

Creating a seizure plan can help reduce anxiety, too

Sign up to receive the Seizure Planning Tool—a great way for you to make a plan with your child without Dravet syndrome so they know what to do when their brother or sister has a seizure.

A child with Dravet syndrome taking a selfie with his sister
Will, 9, with his older sister

Dedicate Time for the Siblings

If you have multiple children in the family, it’s important to set time aside for siblings without Dravet syndrome. Parents and caregivers who we spoke to suggest doing something simple. It could be going for a walk, to the grocery store, or out for ice cream. Or it may be an overnight trip to a nearby city. Anything that you and your child enjoy is an opportunity to spend quality time together.

Doing so may mean you have to trust a relative or friend to take care of your child who has Dravet syndrome, and that’s okay. You may need that break as much as the siblings do.

One-on-one time with your child without Dravet syndrome, away from the environment they live in, can help them worry less. It also may help strengthen your relationship with your child. You and the sibling are able to share personal experiences, and they have a chance to express how they are feeling to you without having to worry about hurting anyone’s feelings.

Share your advice for managing day-to-day
life with Dravet syndrome, so you can help
other families do the same

Get support and inspiration from
other parents and caregivers from
Shine Forward With Dravet

Share your advice for managing day-to-day
life with Dravet syndrome, so you can help
other families do the same

Get support and inspiration from
other parents and caregivers from
Shine Forward With Dravet

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