A Life with Down Syndrome

When Rachel and James Crouch’s third child, Ava, was born with Down Syndrome, they went into shock. But they soon discovered that parenting a child like Ava could be a very positive experience.

cannot tell you how much we love Ava, and if you asked me whether I wanted to change her diagnosis, I would honestly say ‘no’.”

Rachel Crouch is now very proud of her youngest daughter, and is full of hope for the future, but two years ago she and her husband, James, had to come to terms with something which was, for them, totally out of the blue.

Rachel’s pregnancy with Ava had been uneventful, and there had been nothing to suggest that anything out of the ordinary was going to transpire. “All my scans and blood tests came back with a low chance of having a baby with Down Syndrome,” says Rachel. “In fact, I had a friend who had a 1/17 result and her little boy didn’t have it, when, ironically, Ava did.”

Rachel had Ava at home, in the early hours of the first of January 2010. “The midwives disappeared into the kitchen, and after an hour they appeared again – to tell me that they thought Ava had Down Syndrome. My heart sank, and what had been elation and joy turned into shock and horror.” Understandably, Rachel and James needed some time to assimilate the unexpected news, but their feelings were brought into focus when, at just five days old, Ava had to undergo surgery on her stomach. “It made us think that we didn’t care that she had Downs, we just wanted her to survive.”

Happily, Ava made a full recovery from the operation, and her relieved parents set about finding out more about the condition. What they discovered was that the biggest challenge was not Downs itself, but prevailing attitudes to it. “Ava has never been challenging,” explains Rachel, “if anything, she has been easier than my other two children. But when doctors are delivering a Down Syndrome result to parents it’s often done in a way which makes you feel as though it’s the end of the world, and that it’s the worst thing that could happen to your child. We had to find out all the positive things about children with Down Syndrome, and not listen to the old fashioned, out of date information that’s out there.”

One thing that helped James and Rachel to deal with Ava’s diagnosis in a positive way was the discovery of PSDS, a Surrey-based charity which supports children with Down Syndrome and their families. The charity provides pre- and after-school activities for children with Downs, and social events for them and their families. “We came to terms with Ava’s condition quite quickly when we found PSDS. It’s run by young, positive parents who have children with Down Syndrome, and the kids there are just amazing – walking, talking, at mainstream schools and with personalities to die for. It also involves siblings, which is great for our other two children.”

Ava is now two and, with the support of PSDS and her family, she’s developing well. “Ava has done everything that any other baby would do, sometimes sooner than average, sometimes a little later, but nothing to worry about. She’s saying some words, can walk, stand, eat food and drink juice by herself, and sign around 30 words. She knows exactly what you’re saying to her, and she’s bright as a button.”

Rachel is keen to point out that these achievements are not unusual, and that many of the myths that surround Down Syndrome are just that: myths. “Children with Down Syndrome can be bright and understand everything that’s going on around them, they just can’t always vocalise things as quickly. They also walk, talk, learn and behave like other children. With expert early intervention they can read better at reception age than other children, and are perfectly able to learn in a mainstream setting. I would like to clarify that children with Down Syndrome are not ‘all loving’; they don’t ‘all like music’ – and they don’t ‘all have heart defects’. They are just normal children, with Down Syndrome.”

James and Rachel also wanted to ensure that Ava’s brother and sister shared their positive attitude. “We sat Amelia and Oliver down and asked them if they had heard the word ‘Downs’ before. They said ‘yes mummy, Epsom Downs!’ which was quite funny. We told them that Ava has Down Syndrome, and that the only thing that was different was that she may need them to help her a little more with playing, school and going shopping when they are all older. They really don’t care or make an issue out of it – they adore her and she adores them. I think it has made them better kids, actually.”

For Rachel, having Ava has meant reassessing the priorities in her own life. “I’ve run my own businesses since I was 22, and I co-own a performing arts college in Guildford. I used to be very ambitious and quite a workaholic, but now, as much as I love my college and students, my children will always be more important. I think that when you have a child with Down Syndrome you appreciate life as it should be – slower paced; all about family and the small things.”

The Crouch family are passionate about spreading the message that a life with Down Syndrome can be just as rewarding as any other. “I believe that Ava has been sent to me for a reason,” says Rachel, “to change everyone’s ideas about children like her. I would like Ava to achieve something really special, to be an inspiration to other children with Down Syndrome, and to parents who think that their child can’t reach for the stars like the rest of us. My advice to other parents would be to not get down with all the doom and gloom facts and statistics. If I had my time over again I would celebrate the birth of Ava, rather than spending weeks crying and feeling angry. I couldn’t imagine life without her.”

Down Syndrome Facts:
• Down Syndrome is caused by the presence of an extra chromosome. It occurs by chance at conception and is not hereditary.
• Around one in every thousand babies born in the UK will have Down Syndrome.
• Down Syndrome is usually diagnosed at birth, through the physical characteristics associated with the condition.
• Certain medical problems are more common in people with Down Syndrome, but most are treatable.
• People with the syndrome will have some degree of learning difficulty, but the level of that difficulty will vary from person to person. Most people with Down Syndrome will walk and talk, and many will read and write, go to ordinary schools and lead fulfilling lives.

Help and information for parents of children with Down Syndrome is available at:
• PSDS: www.psds.info
• Down’s Syndrome Association: www.downs-syndrome.org.uk
• Down Syndrome Education International: www.dseinternational.org
• The Down Syndrome Research Foundation: www.dsrf-uk.org