Being a ‘Helpful’ Kid
What young carers really need instead of praise.
As I eagerly anticipate my baby’s imminent arrival and am thinking more about how I intend to parent him, I have been reflecting more on my own childhood. It took me a long time (and quite a bit of therapy) to realise that my childhood wasn’t typical.
I had loving parents who did their best to give me everything I needed, we lived in a normal suburb of a normal if dull city in the north-west of England, my dad had a decent if relatively boring job in insurance, and, despite being made redundant at some point during the nineties, had always made enough money for food, bills, the occasional meal out, a holiday every summer, often abroad.
In fact, being an only child meant I was in some ways very privileged compared to our neighbours. I had dancing lessons, piano lessons, went horse riding. I went to a normal state school where I got good grades; there was never any question about whether I would go to university, despite the introduction of tuition fees and student loans. I didn’t face any particular obstacles getting into Oxford. When you imagine a child dealing with ‘adversity’, you don’t think of someone like me.
And yet, the flipside of that idyllically happy and privileged childhood is that both of my parents were ill.
My dad had a hole in his heart when he was born which, although it had been repaired in his teens, continued to cause him problems that periodically landed him in hospital every couple of years.
My mum had a rare, hereditary form of muscular dystrophy that also affected her sister and two of her four brothers. She never returned to work after I was born - by the time I was old enough to go to school, she struggled with basic household chores, couldn’t walk without help and needed to sleep a lot. By the time I was seven she was using a wheelchair outside the house; by the time I was fourteen she couldn’t cut up her own food; by the time I was seventeen she couldn’t stay awake long enough to finish a meal and needed help washing and dressing.
Since kids have a way of adapting to whatever is their norm, I didn’t even realise any of this could be considered challenging. Even though I had plenty of friends with ‘normal’ parents who could eat and get out of a chair by themselves, to me, my reality was just the way things were.
It wasn’t until I became severely ill with an eating disorder in my late teens that a therapist pointed out how stressful this must be for me, how much energy it must take just to survive in that environment, despite my parents’ best intentions.
And I couldn’t accept that. To do so would have been to betray my parents, who did love me after all, and had provided for me even better than most non-disabled parents could manage. I should be grateful for what I had, not complain about the ways it was less than perfect.
I’ve now come to recognise that it wasn’t my parents’ health problems that made this environment so challenging - it was the ways they dealt with their own challenges. For people of their generation, especially in the north of England, silent stoicism was the way you coped with the challenges life threw at you. You put on a brave face and got on with things.
I remember asking my mum when I was six or seven what would happen if they both died, and being told not to worry about that. Around the same time, I asked her whether I would be disabled like her too when I grew up, and again she told me not to worry about it.
In trying to protect me from worrying about what-ifs, they silenced me and left me alone with those fears. I don’t blame them for that - maybe this was the only way they could cope with their own worries. No one likes to see a child grappling with issues far beyond their maturity and feel unable to offer a solution.
But I feel this is where other adults did fail me. Teachers at school knew about my home life, as did our neighbours, church community and extended family. My parents’ health problems were no secret. Instead of being asked how any of this made me feel, I was praised for being helpful, for being good, for being caring.
The truth was, though, I wasn’t helping them because I was a nice kid - I helped because I had to. The times I helped were the times there was no one else to help. My dad is a true superman - he cared for my mum until she died in 2007, without much external support. His dedication to caring for both of us meant that I didn’t have to sacrifice any more than I did - most of the time he was there to do what was necessary. But he couldn’t always be there.
I remember once coming home from school when I was about thirteen and hearing my mum calling out from the bathroom. She’d fallen and couldn’t get up off the floor. Helping her up bruised my arm. Perhaps it sounds callous to say I didn’t want to help her in that moment. I wanted to veg in front of the TV, eat a sandwich, procrastinate about homework, phone my friends to gossip about whichever boy I was obsessing over. Be a normal teenager. But instead, I had to hurt myself helping my mum.
Neither did I want to call an ambulance when my dad passed out one morning and get him taken to hospital. I didn’t want to spend every afternoon for a week in the hospital ward visiting him, I didn’t want to try and calm my mum down as she cried hysterically about how she’d have to go into a home if anything happened to him. I did all these things, not because I was caring and helpful, but because I had no choice.
Of course, this isn’t to say that there weren’t times when I gladly did things for my parents, or that no child should be expected to help at home with age-appropriate chores. In general, I believe this instills a sense of capability and independence, fosters a child’s ability to take responsibility, and helps them learn to be functioning adults who can be good partners or housemates. But the key difference is when parents depend on their child to perform these tasks or provide emotional support beyond what is appropriate.
Often, in families where the adults can’t always do all the adulting, the roles get reversed, and that can be too much for a child to take on.
My mum’s disability was difficult for her emotionally - she would often vent to me about feeling useless, a burden, feeling fat and ugly, feeling like a waste of space, wanting me to tell her she was wrong and remind her she was loved.
And my dad, stoically getting on with it and coping with the stress of caring by bottling it up, could occasionally be angry and resentful. I may have been shielded from many of the physical chores involved in caring, but I took on far more of the emotional work it took to maintain a pleasant atmosphere than was appropriate for a child.
It was my job to be happy, whatever was going on at home. If I wasn’t happy, I was letting them down, showing them another example of their uselessness.
What children with parents who have health problems really need is a master class in boundary setting. Without this, the child becomes very good at setting aside their feelings of being overwhelmed or confused or scared or worried, or downright angry. And in the long run, this means setting aside all their feelings about everything, dissociating, becoming numb.
Children don’t choose their family environments, nor how the adults around them will deal with their challenges. Many, if not most disabled parents are no doubt mindful of this and equip their children to say when things are getting too much, but I suspect I’m not the only kid who felt like they couldn’t admit they felt overwhelmed, or had no one to tell. Perhaps even more, like me, don’t even realise this is what is happening to them when the fear and anger they are suppressing make them ill.
My difficulties setting boundaries carried on long into my adult life, affecting my career, my friendships, my relationship with my surviving relatives, and my romantic relationships in particular. It is only now that I have learned how to say what I need and what is too much for me that I have found happiness and been able to take the step to becoming a parent myself. If there is one thing I know I will do for my child, it is to make sure he can always tell me when things are getting too much, and know I will pay attention, even if some day I have to depend on him more than I would like.
