Tuesday, 18 September 2018

Saying Goodbye to Childhood at Four-Years-Old

Thank you to Lu Hersey for letting me use her slot today. This is my first blog for ABBA and I'd like to thank you all for allowing me the space to talk about something that means so much to me - my brother, Guy, who has severe autism. I hope you enjoy  reading it.

                                                                My brother Guy 2018

Saying Goodbye to Childhood at Four-Years-Old.

“We have a policy of dealing with people like you here.” These were the words spoken to my brother Guy as we sat in a taxi from the airport heading into Johannesburg. For once my father was speechless, as were the rest of the family, shocked into silence by those heartless words. I was twenty at the time, my brother sixteen. We were in South Africa because of my father’s work and because he had felt it would be an education for us to see what it was really like out there. It was a decision that we all too soon regretted, as Guy was viewed with callous indifference or active dislike while we were there.  

Although my brother has no means of verbally expressing how this must have made him feel, his actions conveyed how upset he was, as his face twisted into distorted facial expressions giving rise to more stares and comments. My mother, Guy, my older brother Russell and I escaped into Kruger Park to see the wild animals, preferring to face a muscle-bound predator than the intolerance that was unfolding before us.

                                                                    Me, Guy and Russell 1966

  I was four years old when my brother Guy was born. I realized even then that nothing was ever going to be the same again - and for my older brother and I it meant saying goodbye to our childhood and understanding that all the choices made by our parents wouldn’t be directly about us anymore. 

It soon became apparent that my brother had very severe disabilities – but it wasn’t until many years later that he was diagnosed with autism – the type that’s so severe it requires constant care, as he cannot look after any of his own physical needs and has limited language.

 I adored Guy right from the start and was desperate to help feed him and look after him. My mother would prop him up on the sofa with pillows and let me give him his bottle, but I could never get him to look at me. Instead he would stare at the brightly lit bulb hanging from the ceiling, unblinking, for the whole time he was feeding. I tried it myself but couldn’t last more than a few seconds as my eyes watered up and I’d have to look away. I remember being in awe of this skill that my brother had, little realising at the time how much it already told my mum and my dad that something was terribly wrong.

                                                                Me, my mother and Guy 1968

As he grew older the symptoms became only too obvious, including the terrible tantrums as my brother navigated a world that confused and terrified him. The trouble was we didn’t always know what it was that set him off – it could be something as insignificant to us as a speck of dust on his hand or a look from a stranger, or, as has developed in recent years, an aversion to stairs. This means every route has to be planned to avoid this obstacle. 

I remember how upset he could become on car journeys and would stroke his back for hours to keep him calm and sing his favourite Cliff Richard song, Summer Holiday. I still know all the words off by heart! Guy loved the film that the song came from, (which I must have seen over two hundred times), because it all happened on a London Transport double decker bus and buses were Guy’s passion - and still are. I’ve spent more time riding on the top deck of a London B bus than anyone I know; plus every Saturday he has to go to W.H.Smiths to buy his weekly bus magazine. It’s not a good weekend when he can only get one with trains, unless it has the Dawlish Line service on the front…


                                             My mother and Guy with his favourite bus tee shirt

My brother was a very beautiful child, which didn’t help when he had his meltdowns, because there was no indication that anything was wrong. One day, when I was nine years old and Guy was five, we were out shopping in town when Guy exploded in a tantrum, shouting, kicking and screaming. Several people came up to us, not to offer help, but to berate my mother, telling her she was a disgrace, that my brother’s behaviour was disgusting and that he aught to be put away. 

I couldn't understand why some people were so judgemental. I wanted to tell them to 'put on my brother's shoes' for a moment and try to comprehend what it was like to be him, locked in a world that made no sense to him, a world where even in his sleep he is tortured by his dreams, shouting out in the middle of the night; a world where he cannot show or tell us he is in pain - and once ended up in hospital with an abscess under his tooth, which the doctor said must have been agony.  

I always knew that one day I would give my brother a voice, because I wanted people to see that his life is not unworthy and that we need to look beyond disability to ability. His life has fuelled my desire to help dispel the myths of disability because I need to make it clear that when you have a brother like mine the positives far outstrip the negatives. My brother has taught me compassion, kindness, patience and the ability to empathize. My love for him is boundless and although he cannot express emotion himself, when I visit him now he greets me by placing his head on my shoulder and saying, "My Mel". This simple statement means more to me than a thousand words ever could. I am the person I am today because of my brother and I can't thank him enough.

                  Guy and I making nibbles for lunch                                                             

                                                                                                  Me and my older brother Russell 1966

I'm going to leave the last words to my brother - because I haven't mentioned the laughs we've all had with him over the years. We were at a restaurant trying to enjoy Sunday lunch for a birthday celebration. Two women sat whispering, pointing and shaking their heads at Guy, whose facial expressions gave away the fact that he had a learning disability. During a lull in the conversation across the whole restaurant, Guy, in one of his rare moments of lucidity, turned to the two ladies and with perfect comic timing said in a loud voice, " And you can shut up!" I can still hear the laughter and applause from all the other customers ringing in my ears.


                                                My favourite hippo made for me by Guy in his art class

Mel Darbon



Sue Purkiss said...

Thank you for this moving piece. I've learnt a lot from it about autism and attitudes to it, and your affection for your brother absolutely shines through.

Joan Lennon said...

Yes, thank you, Mel - and the final image of the glorious hippo Guy made for you made me so happy!

Helen Larder said...

This really touched me. My daughter has autism and I recognised a lot. Thanks xxxx

Penny Dolan said...

Thank you for writing this post, and for the positive love and humour shared within your - and Guy's - story. That restaurant moment was priceless.

Unknown said...

Such a warm and moving post - thank you.

Julie Day said...

Thank you for this. I have Asperger's, a much milder form of autism and know how hard it can be for family to cope with it. I do feel that I am grateful I have ASD and not severe autism like your brother. I can empathise with your brother about stairs as I am having anxiety about those myself now. Had to laugh about your brother telling the women to shut up. That is the truth and his bluntness coming out. Good luck to you all.

Sandra Mayo said...

Hi Mel. Such a great post about your lovely family. How alike you are to Janet when she was younger. Hope to see you all soon.

Rowena House said...

Thank you so much for telling us about Guy. And good for him, shutting those women up. What a life you've all had. I hope Africa's wildlife gave you all joy.

Dianne Hofmeyr said...

This was extremely moving. And loved that hippo. As a South African, I'm just appalled that your introduction into South Africa was such a traumatic experience. Our family have experienced the same blunt, unthinking and unfeeling words from a doctor. So totally heartless! How wonderful that you have this relationship with your brother. Thank you for sharing.

Unknown said...

Love, love, love this blog post. I come from a family where several members have been diagnosed with autism and really enjoyed reading about your relationship with your brother. I'd have loved to have been in that restaurant to give him a cheer. I'll be looking out for your book x

Anne Booth said...

Thank you for this really moving post. Guy sounds lovely.