Families can experience a series of transitions: recognising changes in a child’s learning, behaviour or seizures; navigating diagnosis and treatment; responding to regression or changing support needs; and, later, adjusting to recovery and ongoing effects. Resources will be collated here that could help families at different stages.

People’s adult outcomes and support needs vary widely. Some adults live independently but continue to experience challenges with attention, executive functioning, learning, memory, fatigue, anxiety, work or relationships. Others have significant or profound disability and need ongoing support with communication, daily living, health care, decision-making and community participation. Some are also exploring whether ADHD, autism or other neurodevelopmental differences help explain their experiences. This section will bring together information, peer support and practical resources for navigating adulthood.

Contributions are sought from parents and other unpaid caregivers about resources, education, reading, services and personal strategies that have supported your wellbeing while navigating DEE-SWAS and related conditions.

Resources to help explain your child's diagnosis and needs to educators.

Organisations around the world that support children and families living with DEE-SWAS, EE-SWAS, CSWS, ESES and LKS.

Expert educational videos, conference presentations, webinars and podcasts.

To come

To come