There’s a version of those early years that I’ve never really talked about properly. Not the meltdowns… I’ve mentioned those. Not the trips to the supermarket that ended with both of us in tears on the floor of aisle seven. I’ve touched on all of that.
What I haven’t talked about is the silence around it.
Because the hardest part wasn’t the chaos. It was doing it completely alone.
Before Matthew was diagnosed, before we had a name for what was happening, before any professional took me seriously… there was just me. Me and this beautiful, confusing, exhausting little boy who I didn’t understand, and a world that kept looking at me like I was the problem.
And in a way, that was exactly what they told me I was.
I remember calling the health visitor and asking for help. I thought that was the brave thing to do. I thought that was what you were supposed to do when you were struggling… put your hand up, ask for support, let someone in. So I did. And she came out and looked at me… not at Matthew, at me… and told me my anxiety was the issue. That I was rubbing off on him. That if I just sorted myself out, he’d be fine.
I was devastated.
I cried in front of two strangers, which only made the whole thing worse. My eldest came over to hug me, which made me cry harder. And she sat there looking at me sympathetically, offered no actual help whatsoever, and suggested I see a doctor.
I felt even more alone than I had before I’d asked.
That’s the thing nobody warns you about… that reaching out doesn’t always work. That sometimes you take all your courage, gather it up, hand it over, and the person on the other side of the door just… doesn’t catch it.
My family were 80 miles away. My husband left for work at half seven every morning and didn’t get home until half six at night. Eleven hours. Eleven hours of just me and the boys, every single weekday. I stopped going out. I stopped trying. It was the only way to keep things manageable. The anxiety of anticipating a meltdown had become worse than the meltdowns themselves.
And I had no idea why any of it was happening.
That’s the part that broke me, if I’m honest. Not having a reason. Not having a framework. Just knowing that something was different and not being able to explain it to anyone… including myself. I couldn’t Google it, because I didn’t know what I was looking for. I couldn’t read about it, because I didn’t have the language yet. I just lived inside it, every day, wondering what I was doing wrong.
Because that’s where your brain goes, isn’t it? When nobody’s telling you the truth, you fill in the gaps yourself. And the story you write about yourself in those moments is never a kind one.
I wasn’t a bad mother. I know that now. But back then? Back then I genuinely wasn’t sure.
When Matthew was eventually diagnosed, something cracked open in me. There was grief, yes… there was absolutely grief. But underneath it, there was this enormous wave of relief. Because it meant I hadn’t imagined it. It meant the meltdowns were real, the exhaustion was real, the isolation was real. All of it was real. I wasn’t anxious for no reason. I was exhausted because I was carrying something enormous, completely on my own, with no map and no support.
And that is what I want other parents to hear…
If you’re in those early days right now… before the diagnosis, before anyone has said the words, before the appointments and the assessments and the support plans… please hear this: you are not imagining it. Your instincts are not broken. You are not the problem.
You are a parent who knows their child. And knowing your child is the most important thing you can do, even when the world keeps telling you to sit down and stop making a fuss.
The loneliness of those years is something I’ll never fully shake. But I also know it didn’t last forever.
And neither will yours.
