Robert Ward is a Parent Carer Worker at Suffolk Family Carers, he is also neurodivergent. Here he explains how his own lived experience helps him to empathise and encourage parent carers.
I wanted to start with my own experience, some days I felt like I was just surviving. Not thriving, not coping, just surviving. Like I was holding it together with a bit of tape and whatever scraps of energy I could find between meltdowns, meetings, school emails and yet another phone call where I was expected to just know what to do.
I used to think something was wrong with me for feeling like that. Everyone around me seemed to be managing better, coping better, smiling more, planning ahead, filling out forms without crying over them. Everyone else looked like they had some kind of manual that I must have missed.
But the truth is, they were probably struggling too. They just weren’t saying it out loud.
It’s hard to explain what this kind of parenting does to you unless you’ve lived it. The never-ending pressure to stay calm when your child is in distress. The guilt for feeling you are not doing enough, even though you are doing everything you can. The energy used explaining your child over and over again to people who do not listen or just do not “get it”. The worry that if you say the wrong thing, ask the wrong question, or express things are going well that the support you need might disappear completely.
And it’s more than that. It’s the way you hold your child’s needs, fears and frustrations in your own body. It’s how your own needs get pushed to the back of the queue, so often you forget they’re even there. It’s living in a world that expects you to be strong, patient, informed, and available all of the time. While also being sleep-deprived, overwhelmed, overstimulated and feeling completely out of your depth half the time. And no one really talks about that bit. Not properly.
People call you strong and say, “I don’t know how you do it,” like it’s meant to be comforting. But honestly, sometimes I didn’t know either. I didn’t feel strong. I felt like I was just about keeping my head above water while trying to juggle a thousand invisible things, supporting behaviour, forms, preparing food my child will actually eat, school communication, my own executive function, the bills I forgot to pay or emails I forgot to reply to, the guilt, the isolation, and everything in between.
And I’m neurodivergent too, which just adds a whole extra layer that people don’t always see. Some days I couldn’t even manage my own regulation, let alone support someone else’s. Some days I
needed silence and space, but life didn’t allow that. I was overstimulated from the minute I woke up. Sensory overload, emotional overwhelm, decision fatigue or task paralysis. I didn’t even know where my own body was in space half the time because I was so busy supporting my child’s needs and making sure they were safe.
And yet, people expected me to be the expert. To know what to do. To advocate calmly and firmly. To always be one step ahead. To explain things clearly. To never miss a deadline, to never miss a cue, to never lose it, even when everything was burning around me. But I did lose it sometimes. Of course I did. I am only human. And that doesn’t make me less of a parent. It makes me a parent who’s doing their absolute best in a world that wasn’t built with us in mind.
There were times I cried quietly in the kitchen while pretending to be busy. Times I had to walk away because I could feel myself unravelling. Times I forgot how to ask for help, or didn’t know who to ask, or felt like asking made me look incapable. I felt ashamed of how hard I found it all, as though struggling meant I wasn’t cut out for this, even though I loved my child more than anything in the world.
And that’s the part no one talks about. That you can love your child with every fibre of your being and still feel like it’s all too much. That you can be so committed, totally invested, and still be absolutely exhausted. That you can want to be everything they need, and still not know how to be that person when you’re running on empty.
But here’s the thing I want you to hear, and maybe believe a little bit, even if it’s hard to take in.
You don’t have to be strong all the time.
You don’t have to have all the answers. You don’t have to be the calm one every moment of every day. You don’t have to respond to every email straight away. You don’t have to stay composed when your child is in crisis, or when a professional says something that cuts deep. You don’t have to get it right all the time. You don’t have to fix everything. That was never your job.
Your job is to love your child. To show up the best you can. To take care of yourself when you’re able. To get through the day, however messy and loud and imperfect that might look. And you’re already doing that.
You’re allowed to feel like this is hard, because it is hard. Not because you’re weak, but because it’s genuinely a lot. The systems we’re expected to navigate weren’t made for families like ours. The support we need isn’t always there when it should be. The understanding we deserve often comes too late, if it comes at all.
And yet, you’re still here. Still trying. Still fighting. Still loving. That’s not just strong. That’s incredible.
I know it doesn’t always feel like it. I know there are days you feel broken, or lost, or like you’re doing everything wrong. But you’re not. You are doing so much more than you realise. Every single day, you’re doing the invisible work that holds your child’s world together. You’re noticing the
triggers before anyone else does. You’re calming storms that no one else can see. You’re adjusting, adapting, learning constantly, because you care.
That matters. That is strength. Even if you don’t feel strong, even if you’re exhausted, even if you’re falling apart on the inside.
You’re not alone in this. There are more of us than you know, quietly holding it all together, or letting it fall apart, and then trying again the next day. And we need each other. We need more honesty. More compassion. More people saying, “Me too.” Because this journey isn’t just about services or strategies. It’s about surviving. It’s about finding hope when things feel hopeless. It’s about making space for your own emotions, not just your child’s.
And if you’ve made it this far through this article, maybe you needed that reminder today. Maybe you needed someone to say, “You’re not failing. You’re just tired. And that’s okay.”
You are enough. Exactly as you are.
So no, you don’t have to be strong all the time. You just have to be real. You just have to be here, in whatever way you can. That’s more than enough.
You’re not alone. And you’re doing better than you think.
You can’t pour from an empty cup as they say but you also don’t have to be the kettle, the mug, the teabag, and the water all at once. Let someone top you up when you need it. Let yourself rest. Let yourself breathe. You’re allowed.
Robert runs parent carer drop ins at Claydon and virtually. You can also book an Ask the Advisor 10-minute appointment with him on MS Teams.
