'I wouldn't swap Elliot for the world'

Published on Friday 30 October 2009 20:02

DESPITE recent headlines, it's not only older mothers who are rising to the challenge of raising a Down's syndrome child, finds Claire Black

AS CLAIRE Blanch pulls her front door open two little faces look up at me. I could hear them before I knocked but the appearance of someone new has sparked a rare silence. Nearest to me is Elliot, he'll be three next month. Wearing a skeleton suit, he makes a beeline for me. Behind him is his little brother Ethan, one, wearing a bat suit – the boys have been at a Halloween party at nursery and the outfits are staying on until bath time.

"It was tidy until two minutes ago," Blanch rolls her eyes as we troop through to the living room. It's the usual scene of devastation when children are playing: there are plastic balls scattered all over the carpet and a miniature shopping trolley abandoned in the middle of the floor surrounded by cars and cuddly things. Toys squeak and beep and play squiffy-sounding songs as the boys push buttons and play.

Blanch wipes noses, rubs bumps better and sorts out squabbles. Like most mothers of two toddlers, she's a seasoned multi-tasker. She talks fast – "I'm a bletherer," she says – and today Claire Blanch has got a lot to say. A report published in the British Medical Journal has been picked up by a number of newspapers and there are headlines about the fact the number of babies diagnosed with Down's syndrome has risen by 71 per cent in the last 20 years.

Some articles were balanced and informative: the increase in diagnosis relates to the fact that more women are having babies later in life. The chance of having a baby with Down's syndrome is one in 940 for a woman aged 30, increasing to one in 85 by the age of 40. Live births of babies with Down's syndrome fell by 1 per cent (from 1.10 to 1.08 per 1,000 births) over the same period.

Some reports, according to Blanch, were less positive. They did little to let people know that not all babies born with Down's syndrome are born to older mothers and did little to challenge the myths surrounding the realities of life as a parent of a child with DS.

Blanch was 25 when she had Elliot. Her pregnancy had been healthy, Elliot's birth was fast but straightforward. Now, looking back, there were signs that Elliot was different to the other babies but at the time, Claire didn't know what that meant. He was small – 4lb 15oz – and seemed to be cold all the time; he didn't cry very much and Claire had to wake him up to feed him.

"He was born on the Tuesday morning and on the Friday afternoon that's when they (the medical staff] came over and said can we have a word," Claire says. She was taken along to the office where the paediatrician asked Claire if she had noticed anything "strange" about Elliot's features. Claire hadn't and the doctor said that was good because it was normally the "mums who noticed".

"He never said what I might have noticed," Claire says. "I didn't know what he meant – you're in a daze, you've got a new baby."

Later on that day, after a phone call to Elliot's dad, who pursued the matter with hospital staff, it was revealed that a midwife had noticed that Elliot's features might indicate that he had Down's syndrome. Blood was taken from Elliot and Claire was told that it could take up to two weeks to determine the results. It didn't take that long and by the Monday, Claire knew that Elliot did have Down's syndrome.

As Elliot careers around the room, adding balls to his trolley then tipping them out, swiping a toy from his baby brother's hands before being helped to give it back, Claire points to a large photograph on the wall. It's of Elliot just after he was born. He looks squashy and wrinkled, just like any newborn. He's wearing a tiny knitted hat; his eyes are tightly shut.

"I can tell now because of his eyes," she says, "and because of the number of babies I've now seen, but then I didn't know."

How did she feel when the results were confirmed? "You feel disbelief at first. You think it can't be right, that there's been a mistake, that the doctors have got it wrong. You are just so shocked. Once you do believe it, after a couple of days, you still feel shocked and a bit sad because you worry way into the future. You would never usually look at a newborn baby and think he's never going to get married, he's never going to have kids, but at the time you do. You feel sorry for them and worried that they'll be picked on at school."

According to Lou Marsden, senior information officer at Down's Syndrome Scotland, an Edinburgh-based organisation that supports people with Down's syndrome and their families, this early reaction is common and something that new parents need support to deal with. "Sometimes new parents skip straight ahead to 'my child's never going to live on their own, they're always going to live with me,'" says Marsden. "That's 18 years down the line, so there's no need to think about it at that moment. The tiny baby days go by so quickly, all of a sudden you've got a toddler on your hands and you didn't just enjoy being the mum of a brand new baby and all the pleasures that brings. We want to encourage family and friends to really celebrate this baby, to pick the baby up and cuddle him or her so that they really become part of the family."

Looking back, Claire can see the difficulties that she had. "You kind of regret not just letting them be a baby. It's like you've got blinkers on and you only see them as a baby with Down's syndrome. I did calm down and realise that he was just a baby and we needed to do normal things, like go to Tesco, but for the first six months anyway I had those blinkers on."

When Blanch left hospital she was given a leaflet with the number for Down's Syndrome Scotland. It took her two days to call. When she did the first thing that happened was that a parent contact, a parent with a child with DS whom they often bring, came to visit.

"My parent contact didn't bring her son because he was at school, but she helped me with the questions I had and she told me what her wee boy was like," says Claire. "She also told me what was on in Edinburgh. We're quite fortunate – there's a lot on here because we've got DS Scotland. We've got a mother and toddler and Saturday Sunflowers, which is for kids a bit older. We have ceilidhs and Christmas parties – loads of things.

"As soon as she told me about those groups I wanted to go along and meet people. That's your greatest source of help. As much as the professionals get involved and offer help, there's no one who can support you like another parent who's gone through the same thing."

There are around 25 parent contacts in Scotland, including Claire, and according to Marsden the role they play is vital. "They can give new parents a very balanced view," she says. "It's not all sweetness and light, they'll share some of the difficulties, but they'll share the positives too, the happiness of having a child with Down's syndrome."

Claire always takes Elliot along with her to meet new parents. "They want to see what he looks like and what he's doing. They want to get an idea about what their child will be doing. They ask tons of questions. That's exactly what I was like."

Blanch borrowed every book she could from DS Scotland, she read everything she could to inform herself about Down's syndrome and to be aware of the challenges Elliot might face. According to Marsden, all parents find their own way to cope but for DS Scotland it's about providing a range of services that allow people to access support in a way that suits them. "Down's syndrome is present throughout life, so we want to make information and support available at all ages and stages of life.

"I've worked here for ten years. Sometimes I'll talk to the parent of an eight-year-old then not hear anything for years. And then there'll be a question about puberty. Then you might not hear anything and then there's a question about leaving school. That's exactly why we're here."

Marsden explains that speech and language therapy, a high priority for parents, is a new area of expansion for DS Scotland. The aim is to use total communication – using signing, pictures and words, to help parents and children communicate better. The project is being piloted in Edinburgh at the moment and it's been a huge success.

Elliot munches through a bowl of crisps and then signs to his mum that he'd like more. Claire signs that they're finished and it's nearly tea-time so there'll be no more and he reluctantly gives up. "His speech development is slow," she says. "But he is getting there."

Elliot goes to mainstream nursery and a group for children with special needs. For Claire it's important that Elliot mixes with children with a range of abilities: "It's important for him to know that he's different but that there are other people like him.

"A lot of people come up to me in the supermarket or at church and will say my grandson has got that and ask for my number. They see Elliot doing so much – playing or dancing. I was in Sainsbury's when a woman came up to me to ask about her grandson. There was music on and Elliot was in the trolley seat and he was dancing. She came up and said she thought it was amazing. She asked if he could roll over? I told her yes he could and that he was walking, he walked when he was one and a half. She was shocked. She had been worrying that her grandson might not walk until he was three or four. That can happen but it's not always like that."

Elliot's eye has been drawn by a remote control car and he's pushing the buttons to make it move. "Every day I'm amazed by Elliot," Claire says, telling me how he climbs to light switches, or uses a complicated array of toys and furniture to get to coats hung on doors. "I do think how did he work that out?"

As he tries to put the handle back on the shopping trolley, poking the plastic ends through two small holes, it's not quite working but he's not giving up. Claire watches him and thinks back to when he was born.

"Most people said 'oh I'm so sorry, what a shame'. Some people didn't know what to say. One friend, when I told her about the results of the blood test said 'I'm not going to say I'm sorry because I'm not, you've got a baby'. She was the only person to say that and it was great. I wouldn't swap Elliot for the world."

&#149 For more information or to get involved, log on to www.dsscotland.org.uk