When did you last have something to look forward to?

I want to tell you something that took me a long time to admit out loud.

There was a period, not that long ago, when I stopped looking forward to things.

Not dramatically. Not all at once. It crept up on me so quietly that I almost didn’t notice it happening. But somewhere along the way – somewhere between the cancelled plans and the appointments that fell apart and the mornings where I had already run a marathon before 9am – I stopped expecting the future to hold anything good.

I don’t mean I was depressed (though honestly, the line is blurry sometimes, isn’t it). I mean that my brain just… stopped booking things in. Stopped imagining things. Because what’s the point in looking forward to something you know you probably won’t be able to do?

We were still so early in our journey. I barely understood what we were dealing with. PDA was something I’d only recently discovered, and everything – the behaviours, the school stuff, the way our whole house seemed to revolve around keeping one small person regulated – still felt completely reactive. Like I was constantly firefighting but had no idea where the fires were coming from.

And the loneliness of that.

God, the loneliness.

Because it’s not the kind of loneliness you can explain to someone who hasn’t lived it. You can’t say “I’m lonely” when you haven’t been alone in weeks. When someone needs you every single minute.

The loneliness I’m talking about is the loneliness of being completely misunderstood. Of watching other families plan holidays and weekends and evenings out, and knowing that your life doesn’t work like that. Of having to say no, again, to the friend who stops asking eventually. Of staying in the home bubble – again – because out there is unpredictable, and unpredictable costs you days.

I remember thinking: when did I last have something to look forward to?

Not just “when did I last do something nice.” I mean genuinely look forward to. That fizzy feeling of something on the horizon. I couldn’t remember.

Because you can’t really make plans when you can’t even plan to go to the supermarket later that day. You can’t hold a future in your mind when you don’t know what the next hour looks like. And over time, when you stop making plans, you stop having anything to look forward to. And when you have nothing to look forward to, the days all blur into one long, exhausting stretch of surviving.

That’s not living. But back then, I didn’t even have the language to say that out loud.

I also carried so much self-blame in those early days. I second-guessed every single decision I’d ever made. Was this my fault? Had I caused this somehow? Would a different parent be handling it better? The 3am thoughts were brutal.

And the grief – quiet, unannounced, and completely without ceremony – of a life that was supposed to look different. Not the life I’d planned for my child, though that grief is real too. The life I’d planned for myself. The person I thought I’d still be by now.

Nobody tells you that you grieve those things. There’s no name for it. Nobody brings you flowers.

Research published recently* confirmed what so many of us already know in our bones – that parents of PDA children experience isolation, grief, and a loss of autonomy that goes largely unrecognised and unsupported. That we cancel plans at the last minute. That we lose friendships. That resentment and guilt can sit side by side in a way that makes us feel like the worst people alive for even admitting it.

We’re not the worst people alive. We’re people carrying something enormous, mostly alone, mostly in silence.

If you’re in those early days right now – still figuring out what you’re dealing with, still overwhelmed, still not quite sure how to even begin to look after yourself when everything feels this reactive – I want you to know that what you’re feeling is real, and it’s named, and it makes complete sense.

And it doesn’t have to stay this way.

I created my free 4-day mini course – consider it a nervous system reset – for exactly where you are right now – not to fix everything (nothing fixes everything) but to give you small, manageable things that help you feel slightly less like you’re drowning. That’s it. Small enough to fit into this life. Real enough to actually help.

If that sounds like something you need right now, register here.

You’re not alone in this. Even when it feels like you really, really are.

*The experience of mothers of autistic children with a pathological demand avoidance: January 2025