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There’s a saying I once heard, 'You’re only as happy as your unhappiest child.' I didn’t fully understand it until I became a mother. Not just any mother, but a neuro-divergent mum to two incredible young people with disabilities and additional support needs. Both of my daughters are autistic. Both have faced more in their short lives than many adults ever will. And I’ve had to walk with them,  often fight for them , through a world that was not built with them in mind. 
 
A Journey Carved by Crisis and Courage 
My eldest, now 20, is in college. Her path here was anything but straightforward. She’s is Autistic and has other associated health conditions like hyper mobility, FND. She's on long waiting list for ADHD assessment. Mainstream education broke her. School caused her harm from which she is now recovering.  
 
My youngest, now 17, contracted E. coli meningitis at just 10 days old. The aftermath changed everything. She developed hydrocephalus and has had four brain surgeries to manage her shunt with another pending for an isolated fourth ventricle. She, too, is autistic. But it’s not just the physical battles that have been the hardest. She was just nine years old when she told me she didn’t want to be here anymore. PTSD and deep mental health struggles followed, and these wounds, though invisible, have been the most harrowing to navigate. 
 
People talk about surgeries, hospital stays, and diagnoses. But they don’t talk enough about the fear. The kind that lives in your body when you’ve held your child’s hand not knowing if they’d survive the night. The kind that shadows you into every school meeting, every medical appointment, every 'support' session where you must explain, again and again, why your child is in crisis. 
 
Most parents don’t live with the daily fear of losing their child. I do. And that is the most exhausting part of it all. 
 
The Periphery of Education: Inclusion by Name, Exclusion in Practice 
There’s no neat way to describe what it feels like to live on the fringes of mainstream education. Imagine being present while invitations are being handed out to a party, and knowing you’re not getting one. Imagine being expected to smile through that, and worse, being judged for not smiling. That’s what inclusion looks like in our schools. You’re 'there”  on the register, maybe even in the building , but you’re not participating. Not socially. Not emotionally. Often, not academically. There, but not coping. There, but not seen. 
 
No friends. No proms. No school shows. No rites of passage that so many parents take for granted. And when you try to challenge it, to ask for support, you’re labelled the problem — too loud, too emotional, too much. I mourned the death of 'normality' long ago. What I grieve more deeply is the realisation that we didn’t matter.  not to mainstream education. Not to local authorities. Not to the systems that were meant to help us. I had held onto the hope that, even if adults were overlooked, surely someone would care about the children. But even that illusion began to crumble. 
 
Isolation, Loss, and the Strength to Fight 
This journey cost me friendships. When you’re a single parent of disabled kids, you don’t have the spoons for small talk, coffee mornings, or the performative side of social life. Neurotypical friendships often came with silent expectations I couldn’t meet. My own neurodivergence, long masked, long ignored, raged against the weight of it all.  But sometimes, when you’re backed into a corner, you discover a fight you didn’t know you had. 
 
I found my tribe. I began to speak out. To campaign. At first, not to change the system,  that felt too big, but to save myself. I connected with others, including Natalie Blue, who understood the exclusion, the fear, the daily battle. Together, we grew a circle of parents/carers and young people who had all been told, explicitly or silently, that they didn’t belong. We called it Empower:ED Scotland because we wanted to be empowered ourselves.  
 
Exclusion isn’t just a word. It’s a message our society sends over and over to neuro-divergent families: you don’t matter. You’re not welcome. And we won’t even acknowledge that it’s happening. 
 
Holding Hope in the Darkest Moments 
I’m not religious. But when my daughter nearly died, I prayed. I begged. I said I’d accept whatever came after if only she lived. I did accept it,  for a while. Until I realised that 'accepting' wasn’t survival. It was submission.  I don’t believe anymore that we must accept being treated as second-class citizens. The shame I carried wasn’t mine to bear. It belonged to those who chose to ignore us. Who denied our reality. Who had the power to include and chose not to.  
 
Over the past 20 years, I’ve lost my profession. I’ve lost my home. At times, I lost myself. But I’ve also found clarity in what matters. Not the jobs. Not the stuff. Not the status. What matters are my daughters , who are kind, clever, compassionate, and fiercely resilient. They will contribute to the world, not in spite of their experiences, but because of them. 
 
A Call for Change 
As a society, we need to start listening to families like mine. Not with defensiveness. Not with tokenism. But with humility and urgency. We need to stop pretending inclusion is working when the very people it’s meant to include feel more alone than ever. We need to put children’s mental health and happiness above everything else,  not as an afterthought, but as the foundation of every policy and every system.  Because yes, as a parent/carer, you are only ever as happy as your unhappiest child. And if my journey has taught me anything, it’s that ignoring that pain doesn’t make it go away,  it makes it grow. But seeing it? Naming it? Fighting to change it? That’s where the healing starts.