Our SEND Journey: Why I’m Finally Sharing Our Story (My favourite)

When I started Neurodivergent Me, I never imagined I’d be writing this.

The first blogs I published explored subjects that have fascinated me for years. I wrote about the possible links between dementia and dyslexia. I shared how music became my language long before words ever could. I introduced myself and explained why accessibility and neurodiversity matter so much to me.

Those blogs were personal.

But they weren’t this personal.

For a long time, I questioned whether I should ever share my family’s journey.

Part of that was to protect my children.

Part of it was because living through the journey is exhausting enough without reliving it through writing.

And part of it, if I’m honest, was fear.

Fear that being vulnerable would invite criticism.

Fear that people would misunderstand our experiences.

Fear that speaking openly could be used against us.

Yet the more families I meet, the more I realise something.

Our story isn’t unique.

That, perhaps, is the saddest part.

Over the past few years, I’ve spoken to countless parents who have described the same feelings.

Knowing something wasn’t quite right.

Being told not to worry.

Questioning themselves.

Wondering if they were imagining it.

Feeling like they had to become investigators, researchers and advocates just to help their child access the support they needed.

Some eventually found professionals who listened.

Others are still waiting.

If Neurodivergent Me is going to become the community I hope it can be, then I can’t only write about research and neuroscience.

I also need to write about reality.

Not because our family’s story is more important than anyone else’s.

But because stories have the power to help people feel less alone.

Over the coming months, I’m going to be sharing our family’s SEND journey.

Not just the diagnoses.

Not just the reports.

But everything in between.

The appointments.

The sleepless nights.

The misunderstandings.

The victories that felt enormous but probably looked tiny to everyone else.

The moments we doubted ourselves.

The moments professionals doubted us.

And the moments when somebody finally listened.

This won’t be a series about blaming individuals.

Healthcare professionals, teachers and therapists work under enormous pressure, often with limited time and resources.

Many have helped us enormously.

Others saw only a brief snapshot of our lives and reached conclusions that felt very different from the reality we experienced every day.

I’ll be sharing those experiences honestly, because I believe there is value in understanding both the strengths and the shortcomings of the systems families rely on.

Everything I write will come from our lived experience.

Where appropriate, I’ll refer to reports, assessments and documents—not to embarrass anyone, but because I want this series to be rooted in evidence as well as emotion.

With time, I’ve realised something that changed how I see our journey.

Our son didn’t suddenly become a different child.

What changed was the understanding around him.

Early on, many behaviours were seen simply as behaviours.

As the years passed, professionals began describing sensory processing, motor planning, emotional regulation, body awareness and nervous system differences.

The child hadn’t changed.

Our understanding had.

That shift transformed the way people supported him.

I know many families reading this may still be waiting for that moment.

If that’s you, I hope our story offers something that appointments and reports often can’t.

Hope.

Not because the journey suddenly becomes easy.

It doesn’t.

But because you begin to realise you aren’t imagining what you’re seeing.

You aren’t failing your child by asking questions.

And you aren’t alone.

If even one parent finishes reading these blogs feeling understood, then every vulnerable word will have been worth writing.

This is where our story begins.

Not because we have all the answers.

But because, like so many other families, we’re still learning.

And perhaps, by sharing that journey together, we can make the path a little easier for those who follow.