Parents of a girl with Down's Syndrome say their lives are enriched

The dresser behind Jamie and Victoria McCallum is filled with dozens of birthday cards from Rosie’s classmates. She’s just turned six - but the couple are discussing what life would have been like if they’d terminated the pregnancy. Rosie was born with Down’s Syndrome.

The McCallums didn’t have to confront the idea of termination, however, while Victoria was pregnant. They didn’t take any tests. It was only when Rosie was born that they realised she had Down’s Syndrome. Victoria wouldn’t have terminated, even if tests had come back positive. Jamie, though, knowing nothing about the condition then, might have thought differently.

‘We would’ve had a hell of a debate on our hands,’ he says. Victoria wonders aloud ‘whether our relationship would have survived’. It’s impossible to quantify the joy they’d have lost if there was no Rosie in their lives. Today, knowing the facts about Down’s Syndrome, termination would never cross Jamie’s mind.

The McCallums have grown from a family devastated by Down’s Syndrome to one enriched by the condition. Jamie, 39, runs his own management consultancy, and Victoria, 41, worked in marketing but now raises their children at home. They’re among the most prominent advocates in Scotland’s Down’s Syndrome community, and Rosie is something of a superstar within that world, a child who can count Michael Bublé, the singer Christina Perri, and Phillip Schofield and Holly Willoughby among her admirers.

Those birthday cards on the dresser - from 60 children across their home town, Prestwick - tell the story of the changing nature of Down’s Syndrome within society. Years ago, there would have been no cards from friends.

Every family touched by the condition shudders when they think of the past - of times like the 1970s when children were locked away in institutions, their life chances little more than zero. Today, children with Down’s Syndrome are increasingly embraced by society, they look forward to a future where they go to mainstream school, get a job, live independently and fall in love. There are young people with Down’s Syndrome embarking on careers in theatre and sport; Karen Gaffney, one of the world’s best known people with Down’s Syndrome, swam the channel, earned an honorary doctorate, and gave a Ted talk.

On Thursday it’s the McCallum's 10th wedding anniversary (as well as being World Down’s Syndrome Day). ‘Clearly life had a path for us,’ says Victoria. The family have a message to share, on this week which means so much to them. They fear that just as people with Down’s Syndrome are becoming accepted by mainstream society, that they may - in Jamie’s words - soon be ‘eradicated’.

Until now, accurate testing for Down’s Syndrome centred on an amniocentesis, where a needle draws fluid from the uterus for analysis. Some parents are reluctant to take the test, fearing miscarriage. Now, a new blood test is to be rolled out which can accurately check for Down’s Syndrome without risk. The take up is expected to be huge, and the resulting terminations equally high. At the moment, the abortion rate is around 92 per cent. Scotland has a population of 3000, with 70 births a year.

‘Iceland rolled [the new testing] out and there hasn’t been a Down’s Syndrome birth since,’ says Jamie. ‘It’s like a government-funded eugenics programme.’

The thought of a world without Rosies horrifies the McCallums. Both admit to being completely uninformed when Rosie - the middle of their three children - was born. It’s impossible to make an informed choice about termination when all parents know are the long-standing myths - that children won’t be able to dress themselves, or go to the toilet; that they’ll be life-long ‘burdens’, or incapable of learning.

Jamie says his view of Down’s Syndrome when he was growing up was ‘a form of prejudice - and prejudice comes from ignorance’. He would have seen ‘someone who can’t possibly be happy as they don’t have the faculties of the rest of us, and that’s why it’s such a shake-up to your value system when you realise we’ve made all that stuff up’.

Victoria is brutally honest but even she struggles to admit that when she was growing up she probably saw people with Down’s Syndrome as ‘retarded’. ‘That’s a really awful thing to say,’ she adds. ‘I remember feeling sorry for them. They weren’t accepted, they always stood on the periphery … When I fell pregnant one of my biggest fears was Down’s Syndrome.’

Nevertheless, like many parents, they didn’t opt for an amniocentesis as they weren’t high risk. It wasn’t until moments after Rosie’s birth that they realised she had Down’s Syndrome.

‘I was shit scared,’ says Victoria. She looked at her baby’s eyes and ‘just knew’. Jamie was oblivious. He was holding Rosie - ‘proud as punch’ - and had no idea anything was wrong until Victoria asked if he thought she had Down’s Syndrome. Jamie put Rosie down, took his phone to the bathroom and looked for ‘babies with Down’s Syndrome’ on Google images.

‘I knew at that point,’ Jamie says, but his words falter as tears overcome him. Victoria becomes upset at Jamie’s distress and explains: ‘It’s a post traumatic stress thing. It was a brutal experience.’

Jamie continues: ‘I just put her down and I didn’t pick her up again for quite some time.’ Victoria adds: ‘I shut off and went into automatic mother mode. I just went ‘I can’t cope with this so what I need to do is look after this baby’ - and I’d basically say ‘this thing’ as at that time that’s how I felt. It’s brutal but it’s true.’

‘You’ve this path in your mind,’ says Jamie, ‘and all of a sudden your entire future gets reformed - and then pour in all your prejudice, ignorance and misconceptions.’

Victoria was so traumatised after the birth that she couldn’t go to a maternity ward to visit her best friend and baby. Jamie went but ‘a feeling of dread descended on me. You see things, like the number on the door, and it’s like flashbacks’.

The McCallums kept each other afloat those first few months - when one was down, the other was up. Victoria recalls crying as she breastfed Rosie and wondering if she was in the middle of a ‘grief cycle’ and ‘letting go of the child I expected to have’.

She spent ‘the first eight weeks of Rosie’s life trying to figure out if I wanted to keep her’. Victoria’s voice falters and her eyes fill as she talks about how her sisters find that hard to believe because she was so protective of Rosie ‘from the moment she was born’.

At one point, Jamie tried to rationalise what had happened by thinking of Rosie as a pet. They’re both shocked at the thoughts which went through their minds.

Unlike many children with Down’s Syndrome, Rosie had no severe health problems, such as a congenital heart condition, so there was little difference raising Rosie to any other baby.

Slowly, the couple began to think ‘wait a minute, why is this meant to be so bad?’. There was ‘no Hollywood moment’, says Jamie, when things went from dark to light, but he recalls feeding Rosie one day when she was six months and apologising to her aloud. ‘At that point I believed it would be okay,’ he says, ‘and that’s a major hurdle’.

Things changed for Victoria when she thought about adoption, but couldn’t imagine anyone caring for Rosie the way she could. She recalls going to a Down’s Syndrome meeting and realising ‘I just want to be her mum’.

The mundane reality is that life with Down’s Syndrome just takes a little bit longer. Children will learn to read, walk, talk, go to the toilet, feed themselves - just like any other child - but they’ll always be a little slower. Rosie is probably a year behind other children.

Children with Down’s Syndrome learn differently too. They’re more perceptive of emotions, and visual learners, says Jamie, so they identify the physical shapes of words quicker than sounds - that’s why their house is plastered with stickers on furniture and appliances marked ‘oven’, ‘table, ‘chair’. They also use sign language to speed up Rosie’s acquisition of speech.

Rosie is in pre-school and about to go into Primary One. Children like her in mainstream education help eliminate prejudice. Unlike their parents, the children in Rosie’s class have grown up with a friend with Down’s Syndrome and are basically blind to her condition. ‘I can see the positive effects of Rosie on other people,’ says Jamie.

He’s jealous of Rosie’s classmates. ‘We’ve created a society that values material things - cars, money - and these kids will grow up with someone who isn’t driven by that, and lives in the now, all the time, and her driving force is to be happy.’

Victoria adds: ‘People say it’s changed their way of thinking, just being part of her life. She teaches us more than we could ever teach her. She teaches us to be far, far better human beings, and just be happier people.’

Rosie and a bunch of other children with Down’s Syndrome touched the world this time last year when a viral video of the kids and their mums lip-synching and hand-signing a carpool karaoke version of Christina Perri’s ‘A Thousand Years’ clocked 350 million views. Perri contacted them saying she’d cried over the film - her song returned to the top five. It made national news in 30 countries, and Victoria and other mums appeared on This Morning. Michael Bublé got involved when the children covered ‘All I want for Christmas’. The McCallums started the charity ‘Wouldn’t Change A Thing’, celebrating children like Rosie, and aimed at correcting those misconceptions which caused them so much grief when she was born.

Jamie says in the past he’s told people that Down’s Syndrome ‘isn’t as bad as you think, but now I’ve actually come to believe that there’s serious benefits to this - like the effect on others, like the positive effect on your own values. It makes you a better person’.

‘The paradox is,’ adds Jamie, ‘that there’s been this major progress in understanding how they learn, major medical progress too, and that’s happening simultaneously with the progress in screening and termination to the point of almost eradication. So just as you’ve kind of cracked it on one side, there’ll be none of them left.’

The idea of there one day being no more people with Down’s Syndrome chills them, thinking of what would be lost. ‘You see beyond people’s disabilities to the soul behind that, you see the person,’ says Victoria. ‘That’s what Rosie has taught me.’

Jamie and Victoria treat Rosie no differently to their other children, Abigail and Gregor - and she can get in just as much trouble as them. The McCallums expect a full life for Rosie - job, travel, love.

‘When we first had Rosie,’ says Victoria, ‘I was very scared that we’d have her for the rest of our lives, but actually Rosie’s biggest problem about leaving this house is going to be me not wanting her to go. I think the first child out the door will be her - she’s the most independent. I’m not scared for her future now in any way whatsoever.’

WHEN WORDS CUT AS DEEP AS WOUNDS

WHILE so much has changed for the better in society when it comes to the lives of people with Down’s Syndrome, language is still a blight. Words hurt.

Jo Hughes helps run the charity Down’s Syndrome Scotland (DSS). It may surprise some, she says, but ‘you still hear people with Down’s Syndrome referred to as mongols’.

Mistakes are also made by people not meaning to be cruel. Often the terms ‘Down’s Syndrome person’ or a ‘Down’s person’ is used - that’s putting the disability before the human being. DSS has started a new ‘Mind Your Language’ campaign for Down’s Syndrome Week to let people know that the accepted term is ‘a person with Down’s Syndrome’.

While years ago, negative misconceptions hurt, today seemingly positive misconceptions can do damage too. ‘There’s a huge misconception out there that all people with Down’s Syndrome are forever smiley and happy,’ says Hughes, who worries about this ‘childlike’ image being thrust on the entire community. ‘They have the same range of emotions and feelings as every other human being.’ They go through puberty just like other teenagers, and can be stroppy adolescents.

For Hughes, the struggle to change language is personal. Her son Jack, 11, has Down’s Syndrome and she wants him to enjoy ‘the best life he can have’.

Changing language, changes how people are seen, she says. ‘For every person who we can change how they think and talk about Down’s Syndrome, that’s another day that’s been worth going to work.’

STUDENT AND SWIMMING CHAMP - JUST AN AVERAGE GIRL FROM AYR

CERYS McCrindle is the future. Aged just 17, she’s getting ready to leave mainstream school in Ayr after taking her National Fours in English, Maths, French, Art, Home Economics and Admin. She plans to go on to sixth year and then study beauty therapy at college.

But working professionally in swimming is her real ambition. Three years ago, she joined the GB team for people with Down’s Syndrome, and has so far won three silvers at the Special Olympics, gold and silver at the European Championships, and bronze at the world championships.

Cerys’ success fills her mother Karen, father Ewan and brother Lewis with pride. ‘We’ve treated Cerys just the same as any other child since she was born,’ says Karen. The world is more accepting these days, but there can still be some stupid comments at school - usually from boys. Cerys ‘tells them to grow up and answers them back’, her mother says. Closed minds are a minority among young people, though, and school has been a positive experience.

What worries Karen most is that while the younger generation has changed, the older generation retains old-fashioned prejudices - and that might damage Cerys when it comes to employment.

‘We’re now coming out of the comfort zone,’ says Karen, adding: ‘She’s getting to leaving school age. Even if she does have a full CV, is there someone who’d look and think ‘Down’s Syndrome, what’s she going to offer’ … There’s a fear that no-one will give her a chance.’