Are you a parent, or a carer?

When we welcome a baby to the world, most of us expect to play a lead role as parent. But a child with disability or medical needs changes the script. While plot twists and new characters make their entrance, our role of parent becomes more complex, requiring greater range and, perhaps, an additional credit.

The question is, in the story of our child, how do we feel about appearing as a ‘parent carer’?

Responses to this question are, of course, as widely varied as the families they come from. Thoughts from my own network of fellow parents raising kids with disability span all the way from 100 per cent comfortable in Carer Town to ‘Nope, it’s pure parenthood for me’.

“I don’t see myself as a carer,” said one parent. “I see my job as parent to teach my son strategies to support himself as he grows. But I do get that for other parents, it can be more of a carer role. I guess it depends on how dependent your child is.”

Indeed it does, which is why most of us see ourselves sitting somewhere between parent and carer – and staying open to change.

As one mother said, “I’m my daughter’s parent, not her carer. But as she gets older, I’ll be her carer, as grown-ups don’t need their parents around.” However, another offered: “When they are young, you are their carer. As they grow, you need to be their parent and you can get help for caring.”

A lot of us push against the term ‘parent carer’, maybe feeling, as I do, that it medicalises our experience of parenthood. The charity Action for Carers Surrey defines parent carers as people who “provide support to their children, including grown-up children who could not manage without their help”. And that, right there, raises one of my issues with this label.

My son, Arlo, has quadriplegic cerebral palsy. He’s a non-speaking, tube-feeding wheelchair user who needs significant support to go about his days. But in my mind, the idea of someone being his ‘carer’ conjures a power imbalance. It puts my kid in a vulnerable position – one that I wasn’t willing to accept.

Arlo has a knack for forming deep, beautiful connections and so, with his help, we’ve built a team of support around our family. This includes family members, friends, neighbours, educators, professional disability carers, allied health therapists and doctors.

In the event that I’m no longer around to meet Arlo’s needs – yes, every ‘parent carer’s’ worst nightmare – he will be okay. He could manage without my help, because people in his community know how to feed, dress and bathe him. They are also familiar with Arlo’s Spotify playlist, favourite books and the knock-knock jokes he cheekily delivers from his communication device.

However, had my partner and I not affixed ourselves, unwittingly, to the label of parent carer, this wouldn’t be the case. Had we not recognised that what we do is beyond the ‘typical’ realm of parenting, seen the need for support and sought it out, Arlo would be entirely reliant on us. Our family would entirely centre on, and revolve around, his needs.

“I gradually had that realisation, and I’m okay with it,” says another mother on identifying as a parent carer. “It’s the greatest privilege of my life to care for all my kids and this definition has helped me see more of what I do and to honour it, too.”

Seeing ourselves as a parent carer makes sense of where our time and energy goes. It validates our need for help, be it practical, financial or emotional. And, as that same mum also points out, owning the role of parent carer helps us be better advocates for our children, too.

“I’m not a parent, I’m a professional parent,” she says. “I’m there as part of the team of professionals to make decisions. The buck stops with me – and that definition helps when I use it to my advantage. If you want, it can bring power.”

Perhaps, then, the solution to this identity conundrum is to form your own definition of parent carer. One that recognises the empowering potential of this role – for both you and your child.