'I agree that having a brother or sister with Down's syndrome makes you feel special. I do anyway.'
|Emma Sterland wins prize in Carers UK Creative Writing Competition|
"How can you expect to find anything when your room is in such a mess?" I moaned. Tired and at the wrong end of a long day, our eldest was reluctantly looking for her Physics text book so she could begin her homework.
It was more like bedtime in my view and I was probably a bit grumpier that I should have been as I helped her tend to the filing on her desk i.e. throwing away sweet wrappers, recycling Christmas cards (from last year), putting vital school worksheets in a pile to be dealt with another day, deciding which art to keep and which art to ditch and hunting for the bloomin' text book!
And there, sandwiched between Physics for Phenomenally Disorganised Teens (or similar) and a draft sketch of a band name logo was a full page of A4 in incredibly neat handwritten pencil.
It was headed and underlined 'Reveiw' (sic).
My first thought was that it was a piece of English homework she'd forgotten to hand in. Mia is really good at completing homework on time but forgetting to hand it in.
But on closer inspection it was a review of a short story that I had been sent from the lovely Emma Sterland who works at Scope. It was a brilliant short story, one she has entered into a short story competition and one that left me wanting more. It was written from the perspective of a sibling of a young man with Down's syndrome. Emma is such a sibling in real life too.
As I read Mia's review a lump came to my throat. Her words were so beautiful and she had done all this work, reading and writing about the story without telling me. More importantly it had been emotive for her, it had resonated on a deep level within her wise 11 year old soul.
But first you need to read Emma's story to see what you think...
|Brother and sister: Emma and Ben|
Lessons in Caring
‘Tell us what it’s like to have a brother with Down’s syndrome,’ Miss Goodman had urged in a voice soaked with concern. Freya recognised the tone. It was the one adults reserved for Archie. ‘How’s he getting on at college?’ their neighbour would ask, as if what she’d really said was, ‘Isn’t it terrible about the world ending?’
Freya squashed herself into the sofa, clutching her notebook. She pulled up her legs and made an upside down ‘V’ with her knees. The homework was simple enough. Write about an important person in your life. It was just hard knowing where to start. Archie was five years older than Freya. He’d been around all her life. She couldn’t even pinpoint the moment she realised he was different. It just kind of crept up on her, like being able to whistle.
She picked up her pencil and began chewing it absentmindedly. Truth was it was only when other kids at school quizzed her about Archie she gave it much thought. Usually, they were just curious, and she didn’t mind.
‘He’s got an extra chromosome,’ she’d explain. ‘It slows him down a bit.’ In a way it made her feel important to have a brother like Archie. ‘He has an amazing memory,’ she’d reveal proudly. ‘He can remember telephone numbers without writing them down.’ And it was true, Archie only had to see something once – a tune tapped out in one finger on the piano, a fact about some celebrity or another – and he’d recall it flawlessly. But some kids were harder to impress. ‘Your brother’s a retard!’ they’d jeer.
‘Does it run in the family?’ ‘No. Does body odour run in yours?’ Freya would retort, feeling the muscles on her neck tighten. It was the same sensation she’d get when people gawped at Archie in the supermarket or down at the park. She didn’t mind them looking – after all, he was different – but gawping was something else.
Adults were often worse than children. They’d put down heavy shopping bags for a good stare or crane their heads out of car windows. ‘We’ll send them a bill later!’ mum would say breezily. She never made a fuss in front of Archie.
When people look at Archie, they see someone with Down’s syndrome Freya wrote. When I look at him I see my brother. Her thoughts flashed back to the morning... the letter arriving ... the heat on Mum’s cheeks as she’d read it out. The silence over breakfast. Her pencil snapped suddenly, filling her mouth with a foul metallic taste. She winced and spat the splinters into her hand.
Just then the front door swung open. ‘Shepherds p-pie, chips and p-peas. Apple crumble and custard,’ came a familiar greeting. It was Archie back from college. He always announced his lunch before removing his coat.
Archie was a creature of habit.
‘Missed!’ he’d always say if you whacked him with a pillow. ‘Missed!’ he’d mutter if you caught him out in rounders. Like people say ‘Pardon me!’ when they burp or ’Bless you!’ if you sneeze.‘ Missed!’ was like a reflex for Archie.
‘Is that for me?’ was another one. ‘Is that for me?’ he’d ask at mealtimes, staring at his plate. ‘Is that for me?’ he’d repeat, till Mum answered, ‘Yes, that’s for you Archie – eat up!’ Then – and only then, would Archie tuck in.
Mum called them his ‘grooves’ – his little daily rituals that seemed to give him peace of mind. Like adjusting his shirt in the mirror every morning – a fraction to the left, then back to the right – till he was satisfied with the result.
Everyone was so used to Archie’s grooves, they hardly noticed them. Even when Freya was busting for the bathroom, she’d hop patiently from one foot to the other, while he painstakingly folded and re-folded his face flannel. Archie had two speeds – slow and slower – and if there was one word guaranteed to make things worse, it was ‘hurry’.
‘What you doing?’ asked Archie. ‘Writing about you,’ Freya replied. A lopsided beam spread across her brother’s face. Freya smiled too. Archie’s grins were as infectious as yawning. ’bout me?’
‘Yeah, it’s my homework. I’ve got to write about someone important, so I chose you,’ said Freya. Music – meet ears! she thought. Archie loved nothing more than talking about himself.
‘I see!’ said Archie, happily. ‘Do you wanna know ‘bout my life?’ This was his favourite game – Freya pretending to be an interviewer, Archie the legendary film star.
‘Sure. Tell me about your childhood – before you became famous,’ said Freya, playing along.
‘W-well, I ‘member when I went on holiday and stayed in that hotel,’ said Archie. ‘When you went to Cornwall?’ ‘Yeah – don’t interrupt Freya!’ ‘Sorry. Go on!’
‘W-well, I ‘member Ian and Sandy. That’s when I wanted to be a famous singer.’
Ian and Sandy were entertainers in the Cross Keys Hotel, where Archie had spent a week with the Special Scouts group the previous summer. He’d enjoyed a packed itinerary of swimming, picnics, volleyball on the beach and barbeques. But, for Archie, the highlight of the trip was the hotel entertainment.
Every night, guests enjoyed Ian and Sandy’s take on classics like YMCA and The Birdy Song. Their version of I’m Too Sexy was, to Archie’s mind, superior to the original.
Archie’s obsession with celebrity had already been firmly established. His bedroom walls were plastered with pop idols – Lady Gaga, Michael Jackson, Robbie Williams – and he loved nothing better than to perform at his local Special Needs drama club. Archie had complete faith in his own star potential, and no time for false modesty.
‘You were so good in that show,’ Freya would remark. ‘I know I was,’ he’d reply sincerely. Watching Ian and Sandy gyrating on stage at the Cross Keys every night merely stoked the coals of Archie’s ambition. He’d been able to talk of little else but his ‘career’ ever since. His bedroom door had acquired a gold star and every penny of his pocket money had been stashed away for the return trip to Cornwall this coming summer.
‘Archie, can you lay the table please?’ Mum interrupted suddenly.
‘But mum!’ ‘ Come on, dinner’s nearly ready.’ Freya caught the expression on her face. ‘Yeah, come on Archie, I’m starving like Marvin,’ she said.
Later, as the dishes were being cleared, Freya settled back into the sofa. Opening her notebook, she smoothed down a fresh page and started writing. Archie’s very affectionate she put. In fact Mum says if Archie were prime minister he’d make hugging compulsory. A smile seized her suddenly as she remembered Archie hugging the TV repair man. He’d returned their set just hours before the Eurovision Song Contest. Archie had practically exploded with gratitude. It still made Freya giggle to think of that poor man’s startled face.
Archie makes me laugh she scribbled, then crossed it out, frowning. You’re not supposed to laugh at people with learning disabilities.
But Archie did make her laugh. He made everyone laugh – that was his thing. He was always saying something funny or doing something unexpected.
‘I’m going to do a‘pression now,’ he’d announce, strutting into the living room in a pair of Freya’s stretch glitter jeans and an Elvis wig. ‘Any requests?’
Even stuff that drove you mad at the time – like wearing a batman costume on the beach or standing up in the cinema to wave at an actor on the screen - it would always make you laugh when you thought about it afterwards.
It wasn’t like they were laughing in a cruel way. Archie just made them see the lighter side of life, that was all. Like when Frodo got attacked by that giant spider in Lord of the Rings – The Return of the King. The whole audience had gone quiet, and Archie suddenly yelled out ‘Missed!’
Mum said Archie used to laugh so hard as a child, he’d catch his breath and go blue. ‘Always playing the clown,’ she’d say fondly. It was like Archie had a different take on the world. He didn’t see it in quite the same boring, grey way everyone else did. He lightened it up. He made you look on the funny side.
Freya paused to think about what Miss Goodman had said. Tell us what it’s like to have a brother with Down’s syndrome. How could she explain what it was like? To me, this is normal, Archie is normal. I can’t imagine him any other way she thought. If only people weren’t so bothered about what made Archie different. It was what made him Archie that mattered.
People who knew him saw that. They took him for who he was and not what he looked like. The trouble was people who didn’t know him just saw Down’s syndrome. And often they didn’t try to look any further. They would either be embarrassed or afraid. They’d stare at him or ignore him or they’d laugh and make cruel comments.
She thought again about the letter. Suddenly her eyes pricked with angry tears. She remembered Archie’s excitement when he’d seen it was from the Cross Keys Hotel... Mum’s silence as Archie plugged her for information ... Dad quietly telling him to go and clean his teeth.
‘What is it?’ Freya had asked.
‘It’s a letter to from the Cross Keys Hotel to the Special Scouts group,’ Mum had told her, once Archie had gone.
‘Apparently they’re not being invited back this year. Several of the guests complained – said they’d made them feel uncomfortable. Apparently, they have to put the interests of their regular guests first.’
We do hope you’ll understand. That’s how the letter had ended. Understand! Freya thought angrily. It’s their mouldy guests who should do the understanding!
She wiped her eyes with the back of her hand and snatched up her pencil. Archie is important to me because he has taught me about understanding she wrote. Just because someone looks different doesn’t mean you should be afraid of them or laugh at them. Once you get to know them, you no longer see the differences, you just see the person.
‘Freya,’ Archie interrupted. ‘Yes Archie?’ ‘Do you wanna finish the interview now?’
‘Sure ... remind me what we were talking about?’ ‘Me,’ said Archie smiling broadly as he settled into the sofa next to Freya. ‘Before I was famous.’
So here is what Mia wrote in response to that powerful piece:
A lovely start to the story. The way it says 'people ask with concern' makes me get the impression that she is quite cross, which I like a lot.
Then we have 'She pulled up her legs and make a V with her knees.' It's lovely and gives the perfect image of her.
I agree that having a brother or sister with Down's syndrome 'made her feel important', because it does. I do anyway.
It mentions that he has an amazing memory which is right. Natty does too.
Gawping is a great word. It sounds so rude doesn't it.
"We'll send them a bill later!" F.A.N.T.A.S.T.I.C. (That spells fantastic!)
But I'm not sure about the word 'retard'. There's an image that comes into my head and you wouldn't want to see it.
An abridged version of Emma Sterland's story Lessons in Caring has won third prize in the Carers UK Creative Writing Competition. You can read the other entries here.