Get involved
Are you a parent or carer who:
would like to share your family’s story
wants to share your child’s words
has thoughts on the kind of DEE-SWAS research that matters most to you
Are you a researcher, clinician, educator, teacher’s aide, psychologist, occupational therapist, speech pathologist, support worker, or other everyday expert who:
can share evidence-based strategies
would like to point to published research
wishes to help improve quality of life for children with DEE-SWAS, or those who have reached adulthood and now live with the consequences.
Can you see ways to make this website more accessible, useful, and accurate for families globally - not just in the US, Australia, and the UK?
If so, please email me at melanie@voicesofdeeswas.org
Children are able and willing to share their own experiences, but this requires a shift in how adults think - seeing children as capable individuals with meaningful perspectives on their own lives.
(Source: Epilepsy & Behavior, 2005 - https://www.epilepsybehavior.com/article/S1525-5050(05)00262-3/fulltext)