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.
“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.”
Oli, age 13
— Matthew, age 11, Sydney, Australia
“This was the best night of my life.”
Matthew, age 11
“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