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by Sarah Jones

The inspiration for ‘School Fate’ was taken from my own experience of caring for a child with a learning disability; and also from conversations I have had with other parents of children with special needs.

When I wrote the story, I was thinking back to when my daughter, Tilly, was around four years old and I was first coming to terms with the fact that she has a long-term disability. I’d had very little experience of disability of any kind at the time, and was worried about how I would cope with looking after a child with special needs, and also about how other people would treat her. I had a strong memory from my own childhood of the negative way that children with special needs were perceived; and I realised that I had some negative perceptions myself.

Tilly is 11 now and, despite severe speech difficulties, is a very sociable young lady, who will happily try to engage in conversation with complete strangers; and I am continually surprised at how kind and accepting people are. In part, I think, this is because she is such a lovely girl (though I might be a bit biased), but I also believe that society, in general, is becoming more accepting of people with disabilities.

I couldn’t be prouder of Tilly and the way she copes with her difficulties, and I’d like to think I have become a nicer person through my experience of being her carer and her mum.

School Fate

‘Lady, lady, look at my hair! Can you see all the colours in my hair?’

I turn towards the girl who’s standing beside me, tugging at my sleeve. She’s around fifteen I’d guess. Tall and slim, with long, straight, brown hair – at least I think it’s brown, somewhere beneath the mayhem of multi-coloured stripes.

I can guess what’s happened here: I stopped at the hair-painting stall myself as I came into the fete. Two teenage girls, with a collection of aerosol cans, offered to spray my hair with whatever colour – or colours – I chose in return for a pound donation to the school’s new hairdressing suite. The suite is being set up, they explained, to help prepare pupils who want to study hairdressing at college when they leave the school at sixteen. It’s a popular career choice here, along with catering, horticulture and child-care. Nothing too academic. Though, the online prospectus proudly boasts, most pupils are expected to sit at least one GCSE.

I declined their offer, though I made a donation anyway; but the girl beside me has clearly taken full advantage and had every possible colour sprayed onto her hair. And now, it seems, she wants assurance that she’s got her money’s worth.

‘Can you see the red?’ she asks. ‘And the blue?’ She speaks slowly and deliberately, struggling over every word. This, I suspect, is going to be a long conversation.

‘Yes, I can see them both.’

‘And the yellow. Can you see the yellow?’

‘Oh, yes. It’s very bright, isn’t it?’

‘And the silver. Can you see the silver?’

‘Yes, yes, it’s right here at the front.’

‘Susan!’ I hear my husband call my name and look round to see him standing in the face-painting queue with our four-year-old daughter Hope. ‘Have you got any money?’ he yells.

‘Yes, Tim. I’m coming,’ I call over; and to the girl I say, ‘I’m sorry. I have to go.’ And I scurry away, grateful, for once, that Tim never carries any cash.

I’m pleased with myself as I re-join Tim and Hope. I handled that situation well, I think. I managed to hide the discomfort I felt talking to that girl; the discomfort I always feel around people like her. Simple or backward, we used to call them – or worse.

I remember the cruel, abusive words that the boys on my school bus used to shout out when the blue bus went past. The blue bus that was taking the ‘special’ kids to the ‘special’ school. I didn’t join in, of course. I just looked the other way.

I hadn’t thought about that blue bus in over twenty years. I’d left school at eighteen with good ‘A’ levels, then got a good degree, a well-paid job, and a well-paid husband – and life was pretty-much perfect. Until I decided to have a baby.

At thirty-eight, I still wasn’t sure I was ready; but I knew my chances of getting pregnant were decreasing, and my chances of having a disabled child were increasing. So, it was now or never. As usual, luck seemed to be on my side: we conceived straightaway, and I had a textbook pregnancy – to begin with. My ten-week scan showed a perfect, healthy foetus; and the twenty-week scan confirmed it was the girl I’d secretly wished for. But then, at my thirty-week check, the midwife seemed concerned, though she tried to hide it.

‘Your bump’s a bit small and your blood pressure a bit high,’ she said. ‘I’ll book you in for a scan, as a precaution. Nothing to worry about.’

And I believed her – until I saw the look on the sonographer’s face.

The baby was much too small for dates, she explained, and the blood flow through the umbilical cord was almost undetectable. I had to have a C-section immediately. No one actually said the words ‘or your baby will die,’ but the urgency was clear.

But again, it seemed I was lucky. Our baby was tiny – just under two pounds; but she made good progress, and three months later, our small, but perfectly-formed, daughter was able to come home. We were warned that she might have some developmental delays but, though she was behind in meeting all her milestones, she caught up eventually, and seemed to be developing normally – apart from one thing. At nearly four-years-old, she still wasn’t speaking.

‘But her speech will catch up too, won’t it?’ I asked the paediatrician.

‘I’m not sure,’ she said. ‘And I’m concerned she may have some other, less obvious, delays too. I think we should do some tests, now that she’s coming up for school age.’

A month later, we were back in the doctor’s office discussing the test results. A ten-page report spelt out, in painful detail, all the things our daughter could not do. Her physical development was somewhat behind, her speech was significantly delayed and, cognitively, she scored slightly better than an average one-year old.

‘I’m sorry,’ the doctor said, ‘but I don’t think she’ll ever develop normally. You might want to consider sending her to a special school.’

Her future – our future – was rewritten in an instant. No graduation to attend, no high-flying career to boast about, no wedding to organise, no grandchildren to spoil. Just me and Tim – a worn-out, grey-haired old couple – still caring for our middle-aged child. And in the immediate future, all I could see was my daughter’s lovely face looking out at me through the window of a blue school bus.

I didn’t want to come here, but Tim thought we should at least look round. And when we rang to make an appointment, they said that they were having their summer fete the following weekend, so why didn’t we come along for a casual visit initially.

We’ve reached the front of the face-painting queue and the girl doing the painting asks Hope what she wants to be. Hope draws her splayed fingers across her cheeks and growls.

‘A tiger,’ I translate.

‘Oh, isn’t she adorable,’ the girl says.

She is. Everyone thinks so. But I know it won’t always be this way. As she gets older, she’ll lose her cuteness, and her disability will become ever more apparent. Other children might shun her and call her names; and even adults, who should know better, might shy away from her, embarrassed.

I look round for the girl with the multi-coloured hair and spot her on her own over by the splat-a-rat. She catches my eye and grins and waves excitedly, as though she’s spotted a long-lost friend.

I smile and wave back.

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