Research into developmental and epileptic encephalopathies is progressing, especially in genetics, neuroscience and treatment. However, this work takes time.

For many families of children with diagnoses that sit under the DEE-SWAS umbrella, there is no single or immediate solution to what DEE-SWAS is doing.

This makes everyday support vital.

When my child was diagnosed with EE-SWAS, it was very hard to find practical guidance. That is still the case for many families.

What was needed was simple, useful information and tools and other supports, co-designed with families, to help us:

• understand and explain the condition

• navigate health and disability systems

• support our child’s participation at school and in everyday life.

There are so many decisions families must make after a diagnosis, and no clear best choice. Often just two difficult ones.

The decisions can be highly emotional, as they involve letting go of long-held hopes, expectations and plans.

With each choice, practical, psychological, social and financial costs can build.

Do you send your child to school when they’re distressed, or prioritise rest?

If they can’t attend and you can’t work, why are you still paying fees?

Because you’re told this treatment might work, and they could be back in class any time.

I need help to make these decisions.

Can they stay involved in sport in a more flexible way?

Sometimes it feels too hard to explain to a coach, and my child might fall apart, then me.

So you stop going. You stay home. Those friendships quietly fall away.

These decisions are often made with very little guidance.

In grief and sleep deprivation.

Others have been through this, but it’s rare, so you don’t know them.

I’m not a pioneer, but in many ways I live like one because the collective wisdom is hard to find.

Support works best when it fits into everyday life.

At school, at home, and in the community.

In our situation, it needs to build on what our child was already doing, with evidence-informed adjustments that help them stay involved in ways that are meaningful to them. Not additional programs for me to attend, which suggest that if I just learn more, do more, be more, I can fix what are often systemic problems.

Every child’s pathway is different.

Some children have had neurological differences from early in life. When DEE-SWAS develops, it can be hard to tell what’s new and what has always been there.

For other children, DEE-SWAS follows seemingly typical development. Skills are suddenly hard to access, learning slows and everyday things take much more effort.

This can affect not just what a child can do, but how they see themselves. An identity and a life in transition.

And in my experience, systems don’t acknowledge this.

Education, health and disability supports are often designed around either lifelong disability or stable conditions.

Children whose needs change over time don’t fit easily, even when the functional needs are clear as day. This affects how and when support is provided.

Support also needs to be flexible.

Thinking, energy and sensory capacity can vary from day to day, sometimes hour to hour. Easy to use tools that help educators adjust with the child are more likely to support meaningful participation.

A neuro-affirming approach is important.

At the same time, it has to be ok to name the sadness and loss that can come with DEE-SWAS.

At the moment, there is no narrative framework that brings these perspectives together.

Families learn we must stretch and bend to talk about our child with a neurological, developmental, behavioural or educational lens, depending on the setting.

It’s exhausting.

When appropriate support is available and part of everyday activities, life can look and feel very different.

Children can experience connection, confidence and a sense of capability.

They can stay part of school, relationships and community life in ways that work for them.

This is the kind of research and translation that would really make a difference to me.

If you’d like to explore research yourself, tools like Google Scholar can help you find studies about your child’s epilepsy and related conditions. Research can be written in a way that makes it hard for everyday people to understand. But even just reading the summary (abstract) of a published paper can be enough to get a sense of what it means.

Some parents and carers are using AI tools to help summarise research or explain difficult language. These tools can help you see patterns and ideas, but it’s important to talk things through with your child’s treating team if you want to understand what it means for your child.

A lot of research is behind a paywall, but some epilepsy research is open access, which means it is freely available. This makes a real difference for families like ours who want to understand our child’s rare condition. Over time, I hope to build and share a list of open access research here.