The voices that matter most
If we want to support children with DEE-SWAS well, we need to understand how they experience what is happening to them. But children’s voices are often missing from research and clinical conversations. Their experiences are usually described by us as parents and carers on their behalf.
This page shares words, drawings, reflections and small moments from children living with DEE-SWAS. Some are funny. Some are sad. Some are confusing. All of them help us understand what life with this condition feels like from the inside. If your child would like to share something — a sentence, a drawing, a short story, or something they said that stayed with you , we would love to include it.
“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
— Michael, age 11, Sydney, Australia
— Matthew, age 11, Sydney, Australia
“This was the best night of my life.”
— Michael, 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.”
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— 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.”