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.

Download 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.