My brother like no other
Novelist MEL DARBON grew up with a special needs sibling. Yes, it was tricky, but as a new TV comedy shows, it taught her so much about love, life and laughter
GroWInG up, my little brother Guy couldn’t bear car journeys. Stopping at traffic lights, vibrations from the engine terrified him. He’d cry and scream, not understanding why we were crammed into a tin can on wheels.
From the age of six, I took pride in being the only one able to keep Guy calm when we travelled. I’d stroke his back and sing the same Cliff richard song, Summer Holiday, on repeat until we arrived. Somehow, that made everything oK.
not a typical response, perhaps, for a little girl faced with a full- on tantrum from a brother four years younger than herself. But then, Guy was never a typical brother.
Born with severe autism, he found the world bewildering and often frightening. With only the most basic language skills and just two facial expressions, deadpan or gurning, throwing a tantrum was his way of saying: ‘I’m scared.’
our parents — Janet, an antiques dealer, and Leslie Darbon, the playwright — were told when Guy was a baby that he was ‘mentally handicapped’ and would need a great deal of care for the rest of his life.
A proper diagnosis only came in his teens. By then, we were so adept at meeting his needs it only meant that we had a label, ‘autistic’, to explain his behaviour to others.
In the late Sixties, the term was almost unknown, so strangers often viewed his meltdowns as sheer naughtiness.
Frustratingly, this assumption is still made about children like Guy today. That’s why I applaud the new BBC comedy There She Goes, featuring a child with severe learning difficulties. Former Doctor Who star David Tennant plays the father coming to terms with raising a daughter (played by miley Locke) with complex needs — portraying the humour, love and tears that the situation brings.
And the series was written by extras actor Shaun Pye, whose own daughter has a rare chromosomal disorder.
Like me, he knows these children need much more love and patience than you ever thought you had. I am glad he is able to explain this to a wider audience through his writing.
Growing up with Guy wasn’t always easy, but it taught me invaluable lessons about life, human nature and myself — insights, I believe, that have made me more empathetic and helped my work as a novelist.
Thanks to Guy, I learnt early on that life wasn’t all about me. Some people can take a lifetime to learn that.
When he was born I was four and my older brother russell was six, yet we soon grasped that nothing would ever be the same again. my parents seemed to be for ever whispering together.
The carefree childhood we had taken for granted was set aside, and where once we’d been firmly at the centre of our par-ents’ world, now our time there had to be limited. Guy needed them most.
As a baby, Guy barely slept and had a habit of staring at burning lightbulbs without his eyes even watering. I’d give him his bottle, watch him do this, then try — and fail — to copy it. After a few seconds, pain force me to look away. I became impressed with this strange talent and that’s when I started seeing my brother as someone really special.
The childhood developmental stages passed Guy by. He never learnt how to wash, dress or even make a sandwich; his vocabulary is still that of a toddler.
Family activities had to change. Playing Pooh Sticks alongside a brother with no sense of danger, meant he had to be watched like a hawk in case he charged into the water. This wasn’t fun for any of us, but I don’t recall that we ever felt deprived. We accepted the situation because there was nothing else for it.
russell, now a charity coordina-tor, and I joke that we were always being sent to play in the garden, whatever the weather, while inside mum would be dealing calmly with the latest crisis with Guy. She tried her best to shield us from the worst of it.
Perhaps one thing that made growing up in this situation easier was that I could see how much harder it was for Guy.
I had myriad ways to express my feelings, while he did not have even the most basic of communication skills.
Looking back, the tricky times had far more to do with how other people reacted to my brother than how he behaved.
There were many incidents, but one stands out.
Guy was five and I was nine. We were shopping when he exploded in a tantrum, screaming and hurling himself onto the pavement. Kneeling on the ground to soothe him, my mother gently whispered to me: ‘Stay calm. Try not to react.’
The problem was not the tantrum, but the disapproving adults who gathered, intent on humiliating my poor mother. one smugly tut-tutted, another said mum should be ashamed of this child, so clearly out of control.
‘He can’t help it,’ mum kept saying, unable to turn away from Guy as he flailed beside her for fear he’d run off or hurt himself. Some five decades on, I still recoil at the memory of one woman venomously declaring that my darling brother ought to be ‘put away’.
I couldn’t understand how anyone could consider my brother was of less value than anyone else. If only these stran-gers could experience his life, or my mother’s, for just five min-utes. How I hoped they’d become haunted by the dreams that tor-mented Guy night after night.
Instead, I swallowed my upset and behaved as my mother gently insisted, ignoring every nasty word. She held her head high as we walked home, however much she must have wanted to cry. I’ve been trying to live ever since with the same dignity and resilience she showed that day.
only in retrospect have I learnt to fully appreciate my parents’ willing, intensely loving self-sacrifice. The way they continue to care for Guy to this day, despite being in their 80s, is the greatest example of devotion I could ever hope to witness.
Guy, now 53, still lives with them, and incredibly they don’t have outside help. Dad bathes and dresses him every day.
The day will come when mum and Dad cannot continue, or are no longer here at all. We don’t talk about this, yet there is an unspoken understanding that russell and I will step in.
As a child, I always found it hard to explain to others that, for all his problems, my brother was as human and important as the rest of us. In adulthood, I’ve found a way, by writing about people with disabilities, like the protagonist in my new novel — a girl with Down’s Syndrome.
I adored my little brother as soon as he was born. In return, he taught me compassion, patience and empathy.
I’ve thanked Guy for all I’ve learnt from him and must have told him how much I love him a million times. Like so many with autism, he has never been able to say anything like that back.
But in recent years Guy has found his own way of expressing his feelings. When I visit, he places his head on my shoulder, sighs gently and says: ‘my mel.’
His face might be expressionless and his tone flat, but I know he’s really saying he loves me just as much as I do him.