These hidden voices matter the most

Children’s voices are usually missing from the DEE-SWAS conversation.
Children can develop an overall sense of their self-worth, as well as more specific views about their abilities (like school or sport) and who they are (such as friendships, behaviour, and appearance). (Source: Epilepsy & Behavior, 2005 - https://www.epilepsybehavior.com/article/S1525-5050(05)00262-3/fulltext)
Children are not just experiencing what is happening to them - they are capable of making sense of it.

This page shares real experiences and reflections to help bring children’s perspectives into the conversation, alongside medical and research views. My child once said DEE-SWAS “feels like the day will never end”. A bit like pulling an all-nighter and then having to focus all day at work.

To my knowledge, no one apart from me has asked my child how it has felt, due to DEE-SWAS, to:

  • move to a new school, away from friends, siblings and teachers who knew him well, and knew his difficult journey, because there were no established ways to support him to stay

  • stop playing with friends, be in a soccer team, or read a beloved book - because it no longer felt natural, even though he remembers when it did

  • experience the sudden onset of confusion, overwhelm, ambulance trips, medications and many medical appointments after starting life feeling healthy, strong, clear, capable and at ease.

I am finding ways to ask my child that feel positive, safe, and even a little bit fun.

If your child would like to share - a sentence, a drawing, a short story, or something they said that stayed with you - please see the Get Involved page for instructions, or email melanie@voicesofdeeswas.org

“Embarrassed. Worried. Angry.

I’m embarrassed about the things I’ve done.

I’m worried I’ll never be able to drink a beer [when older] because I’ll have a seizure.

I’m angry that I have epilepsy.”

— Matthew, age 11, Sydney, Australia

“This was the best night of my life.”


— Matthew, age 11, on attending a Linkin Park concert in Sydney, Australia

“I want to be a zoologist or paleontologist.

But sometimes I want to be a police officer or firefighter.”

— Ozzy, age 7, United States

“When I started to lose my ability to speak and hear, it was as if the volume on the world was slowly being turned down until it was silent.

“I became a journalist because I’m passionate about telling stories that empower people who’ve suffered injustices. I know what it’s like to live in silence, so I want to break that silence for others.”

— Caroline, now 24, Texas, United States.
Diagnosed with Landau-Kleffner-Syndrome at age 4

“I opened my Minecraft book to read and then I close it again straight away. It feels too boring when I try to read to myself.”

Matthew, Age 11, Sydney