The Early Days
A Fragile Start
My two boys were born less than two years apart, and those early years were a blur of sleepless nights and survival. I had both peri- and postnatal depression, and eventually I was admitted to a mother and baby unit when my youngest was just a few months old. Those months left me feeling fragile and uncertain of myself as a mother.
My eldest cried endlessly as a baby, was unsettled, and often woke for the day at 1 or 2 a.m. Some of his milestones came later than expected, but when he started at pre-school, no one raised any concerns. I took that as a sign that everything was fine.
First Conversations
The first time someone mentioned SEND (Special Educational Needs/Disabilities) was a shock. Just a few months into his Reception Year at primary school, his teacher asked us to come in for a meeting with her and the SENCO. They told us they thought he probably had ADHD, and possibly another condition.
Hearing those words was overwhelming. My husband and I needed time to process them, to sit with the reality that we were stepping onto a very different parenting path than the one we had imagined. For me, it also triggered a kind of hyperfocus. I threw myself into researching neurodiversities while starting the referral process with the GP. I was unaware of my own undiagnosed ADHD then, I recognise now this was a typical response I frequently have, intrinsically linked to my own ADHD.
Looking back now, I can see the signs were there earlier. What strikes me most is how we were supported by the school relatively early and quickly. However, the wait for assessments and diagnosis is far too long. Many other parents across the country aren’t so lucky. There would be positive change if the available support for every child was joined up, consistent, and quick to access. Waiting lists of more than 3 years to see a paediatrician are common.
Finding the Right Language
Once the initial shock began to fade, we spoke with the school again and then our GP about the concerns that were now shared between us. To their credit, both took us seriously, and the GP processed an NHS referral quickly. However, that referral still took 9 months to be triaged and added to the waiting list.
But while the process moved forward, I remember feeling lost for words. I didn’t yet have the right language to explain my son’s needs in the way I can now. The terminology felt foreign; like everyone else was speaking a language I hadn’t learned. I did my best, but I often left conversations unsure if I’d made my point clearly enough.
That early gap between what I could see as a parent and what I could explain in the system’s words has stayed with me. It’s one of the reasons I believe new parents on the SEND path need practical tools and plain-language guides, so they don’t feel voiceless in those first critical conversations.
Living in Uncertainty
The emotions that dominated those first months were fear, anxiety, guilt, and overwhelm. More than once I caught myself wondering if I had caused this somehow, or whether my struggles with mental health had made me a “bad” mum. Guilt was heavy in those days, and I blamed myself more than anyone else ever did.
At the same time, we were told the waiting list for an NHS assessment was over two years. Knowing my son was struggling in class and still having to wait that long for answers was crushing. After the GP processed the referral, it took nine months just to be placed on the waiting list. A year later, we finally managed to see a private paediatrician, and it took another two months to complete all of the assessments. That stretch of time felt endless.
Finding Strength in Community
To keep myself going, I leaned into learning and connection. I joined online training sessions, read everything I could find, and, most importantly, started talking to other parents. Finding that community gave me both practical advice and emotional reassurance. Hearing from families who had already walked this path reminded me that there was light at the end of the tunnel, even if the system made it feel very far away.
Lessons Learned
If I could go back to those early days and tell myself one thing, it would be this: find your own community. The professionals may not always give you the clarity or support you need straight away, but other parents will. They understand in a way that no report or meeting ever can, and their encouragement makes the hard days feel survivable.
And to my past self: the one who blamed herself, who felt overwhelmed and inadequate, I would simply say: be kind to yourself. You are not failing. You are doing the best you can in an imperfect system, and that is more than enough.
Advice for Parents in the Early Days
Trust your instincts, even if professionals don’t raise concerns at first.
Write down what you notice and bring it to meetings; your observations matter.
Learn the language of the system, but don’t let it silence your voice.
Find your community early; other SEND parents will be your greatest source of support.
Remember: kindness to yourself is as important as advocacy for your child.
