Communicating With Siblings of All Ages
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.
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.
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:
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.
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.
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.
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.
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
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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