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Information for Parents & Caregivers

Epilepsy can be challenging, not only physically but because of its complicated social and emotional impacts. Supporting your child to manage their own condition and share their feelings is just one piece of the puzzle. Ensuring your child’s school and activity providers are equipped with the knowledge they need, and committed to inclusively supporting your child through all the impacts of their condition, can be just as important.

As your child matures, their needs and the impact epilepsy has on their life is likely to evolve. Some children outgrow their condition, others experience changes in seizure type and/or frequency. While it’s tough not being able to predict what lies ahead, you can still play a key role in how they feel about their condition.

Tips for Conversations

Talking To Your Child

Epilepsy is such an individual condition that there are no certainties around its impacts. For some children, it will have little to no effect on their day-to-day lives. For others, it can be isolating, frustrating and scary.

How you talk to your child about their epilepsy can have a big influence on how they feel about it. 

  • Don’t be afraid to share developmentally appropriate information – be honest about their diagnosis and what it means. 
  • Talk to them, as appropriate, about any treatments or management plans that are in place.
  • Encourage them to ask questions and share any worries they might have. 
  • Reassure them that difference is normal! There are lots of children with conditions that require medication and may impact on their participation – from mobility challenges to allergies, neurodivergence to diabetes. 
  • Reassure your child that their epilepsy is not their fault and educate them on what a neurological disease is and is not. 

Educating Others

Epilepsy is, unfortunately, widely misunderstood. If other parents or activity providers have never witnessed a seizure or don’t know much about the condition, they may feel out of their depth. Talking openly about epilepsy and giving people the knowledge and confidence to respond appropriately can build understanding and create a safer and more supportive environment for your child. 

Lack of understanding can also extend to the school environment, particularly in relation to the many hurdles epilepsy can present beyond the seizures themselves. Often, parents will need to work closely with teachers and the school community to ensure everyone has the knowledge and tools they need to respond appropriately to related social, emotional and learning challenges. 

Epilepsy Smart Schools is an evidence-based program developed to support schools to provide a safe and inclusive educational environment for students living with epilepsy. The program helps schools to become ‘Epilepsy Smart’ by implementing epilepsy management plans for students with epilepsy, participating in epilepsy specific training, and holding events that promote better awareness and understanding of epilepsy.

Discover how your child’s school can become ‘Epilepsy Smart’

Epilepsy Smart Schools

While epilepsy can have a significant impact on your child’s experience at school, there is a wealth of support and resources to help you manage their educational journey and achieve positive outcomes. The Epilepsy Smart Schools website provides information and tools to facilitate family and school discussions and planning, which will provide a strong foundation to support your child throughout their school years.

Students with epilepsy are more likely to experience challenges at school, access learning support and have activity limitations, including:

  • Not being able to participate in experiences such as sports and camps
  • Missing classes/school days due to seizures, seizure recovery and medical appointments
  • Embarrassment due to seizures, seizure behaviours or accidents
  • Anxiety, depression and moodiness, including anger and frustration related to seizures or medication.

While having epilepsy doesn’t necessarily mean your child will have learning difficulties, the impact of seizures and medication can make it harder to learn, for example:

  • The stress of keeping up at school can cause seizures, which get in the way of learning, which can cause more stress – a vicious circle
  • Seizures can make it more difficult to concentrate and remember new information
  • Side-effects of medication can include memory difficulties.

When children with epilepsy suffer low self-esteem related to their condition, it can have a huge impact on their motivation and engagement in school. Stigma or misunderstandings about epilepsy can also lead to social isolation or bullying, making it harder for students to form friendships.

Helpful Resources

Resources for Parents

Research shows that how a family copes with diagnosis can have a greater effect on a child’s reaction and behaviour than the severity and frequency of the seizures themselves. Discover how you can help.

It can be tough to ‘let go’, but it’s important to ensure your teen has the information they need to manage their condition responsibly and develop the independence they’ll need for adulthood. Check out our advice.

Resources for Children

Plain-English resources to help younger children understand their condition, look after their wellbeing and feel they have the knowledge and confidence to talk about their condition and keep themselves safe.

Resources for Teenagers

Understand epilepsy and what it takes to live life to the full, while looking after yourself.

Teenagers General Information

Tracking your seizures accurately is the best way to ensure you get the right treatment and support.

An epilepsy diagnosis can be a shock – it’s important to know what you can do to stay safe and well.

Wondering how much is going to change in your life? Not as much as you might think! 

Call us for more information

If you would like to chat with one of the Living Well Team at Epilepsy Queensland, call us on 1300 852 853 or email livingwell@epilepsyqueensland.com.au.

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