Should a Child Become a Young Carer?

Originally written in September 2010 as "Child Carers" — updated with reflections, clarity, and readability in 2026 with updated links and new context.

For those who don't know, I have Facioscapulohumeral Muscular Dystrophy (FSHD). Hopefully I'll write more about the condition and how it affects my life in a future post.

Today, though, I want to share something that happened yesterday which genuinely shocked me and left me feeling quite confused.

Living with FSHD means I need help with some everyday tasks. Getting dressed can be difficult because I struggle to bend down or reach up. Thankfully, I have a very loving and understanding wife who helps me with those things.

One thing we both agree on is that we would never want our son to become a young carer.

Children should be allowed to be children.

I know everyone has different ideas about where that line sits, but for me a child shouldn't be worrying about responsibilities that belong to adults.

Our son is only eighteen months old.

When my wife helps me get dressed, he's often in the room. Over time he's clearly noticed that Daddy sometimes needs help and that Mummy is usually the one helping. He has even learned parts of the routine. On several occasions he has brought clothes to me, usually after emptying most of a drawer to find the right item. It was cute, funny, and something we laughed about.

Yesterday was different.

I was at home alone with him for a short period while my wife was out. We've done this before and always survived without any major disasters.

The problem was that yesterday was one of my weaker days.

When I stand up, I usually turn around and push myself upright using the chair for support. Yesterday it was much harder than normal. As I struggled to stand, my eighteen-month-old son walked over, squeezed himself between me and the sofa, and pushed against me to help.

I have to admit, I was shocked.

I also thought it was incredibly sweet, so he got a big cuddle for helping.

A little later he did exactly the same thing again.

That was when a thought struck me.

Had my eighteen-month-old son effectively become my carer?

I know that sounds dramatic. When people talk about young carers they are usually referring to children who take on much bigger responsibilities than bringing clothes or helping Daddy stand up. Even so, nobody asked him to do it. He saw that I was struggling and decided to help.

That is what made me think.

Where is the line between helping and caring?

At what point does a child helping a parent become something more?

The more I thought about it, the more uncomfortable I became.

Afterwards, I spent some time reading about young carers. One statistic especially caught my attention. The average age of a young carer was ten years old.

Ten years old.

What shocked me wasn't simply the age itself. It was the word average.

If the average age is ten, then there must be children younger than that taking on caring responsibilities.

My son clearly doesn't fit into that category. He's only eighteen months old. Bringing me socks and helping me stand up doesn't make him a young carer.

Yet it doesn't feel like a giant leap either.

Perhaps that's what worried me most.

As a parent living with a disability, I find myself wondering whether it is possible to stop your children becoming involved in your care completely. Children naturally help the people they love. Yesterday my son saw that I needed help and instinctively stepped forward.

Part of me was proud.

Part of me was worried.

I'm still not sure which part was right.

2026 Reflection

Reading this sixteen years later is both emotional and fascinating.

The biggest thing I notice is how much fear sits behind these words.

Back in 2010 I was still married, walking, and convinced that I could somehow protect my children from the realities of my condition. Since then my life has changed dramatically. My marriage ended, we navigated co-parenting, and my health continued to deteriorate. Today I'm a permanent powerchair user and live with the reality of a condition that has continued to progress year after year.

Ironically, the future I worried about arrived.

My children have all helped me in different ways over the years. They have grown up alongside disability because disability has always been part of their lives. One of my sons has even had to make an emergency 999 call after a serious fall.

What surprises me now is that my views on disability have changed just as much as my health.

In 2010 I largely viewed disability through loss, fear, and uncertainty. Today it is a major part of my advocacy, theology, ministry, and writing. Looking back, this post was one of the first times I publicly shared the reality of living with a degenerative condition. I didn't realise it then, but I was taking the first steps towards becoming a disability advocate.

My children have also taught me something important.

They didn't simply learn how to help. They learned empathy, resilience, adaptability, and compassion. Their growth has often mirrored my own.

So, should a child become a young carer?

I still don't think children should carry responsibilities that belong to adults. Families need support, not expectations placed on their children, but life is rarely that simple. What we want vs what life presents, is completely different. 

What I see now isn't a young carer.

I see an eighteen-month-old boy who loved his dad and wanted to help him stand up.

That's a memory I'm very glad I kept.

Meta Description

Should a child become a young carer? A personal reflection on parenting, disability, FSHD, and how one moment with my eighteen-month-old son changed the way I viewed care and family life.