All about a boy called Charlie

The first time any child rides a bike without stabilisers it’s always a landmark. It’s up there with tying their own shoes and writing their own name, but the day Alison Clark and her husband Andrew watched their eldest son Charlie pedal off into the distance it was more than just another box to tick. It was absolute proof that everything they had been told in the days after his birth was wrong.

“I remember us both bursting into tears,” says 46-year-old Alison. “It had taken Andrew about four years of quiet perseverance to teach Charlie how to ride that bike. A lot of people would have given up, but he never did. He always believed that given time and enough encouragement he could do it.”

Truth is Charlie is much like any other young boy. He’s obsessed with wrestling, likes football and dinosaurs and given half the chance would spend all weekend watching Harry Potter films. He also has Down’s syndrome and when he was born 11 years ago, the prognosis was bleak.

“The tests I’d had during pregnancy had come back as low risk, but as soon as I saw Charlie I remember asking one of the nurses whether they thought his facial features were anything to be worried about. It was two days before they confirmed that Charlie did have Down’s Syndrome. It was an awful moment.

“A couple of nurses were really supportive, but I will always remember the consultants going through a long list of the things Charlie would never do. He was the first grandchild for both mine and Andrew’s parents, so it felt all eyes were on us. It felt like we’d been enrolled in a club that we’d never wanted to join.”

Fortunately Alison and Andrew are not the sort to dwell on things they can’t change and back home in Wakefield the couple made a promise to their first child. “After a couple of weeks we both said, ‘Right let’s gone on with it’. We called our friends and said, ‘Look it’s fine, we’re all fine, please come round, we want you to see how beautiful Charlie is’.”

From that day, Alison never looked back and when she became pregnant with her daughter Lola three years later it never even crossed her mind to find out whether her second child had a high risk of Down’s.

“We were so enjoying family life with Charlie that whatever the outcome it wouldn’t have mattered. There is no way we would have gone through a termination, so what was the point?”

The Clark family was completed six years ago with the birth of their youngest son Travis. Neither he nor Lola has Down’s syndrome, but Alison was always clear that all three would be treated as equals. Proof of that is everywhere in the family home. A whiteboard in the kitchen lists the week’s activities. Just like his brother and sister, Charlie is ferried between various sports clubs and all three have signed up to the house rules.

“We always agreed there would never be any excuses for bad manners. The funny thing is, Charlie probably the best behaved of all of them. If we ever have to go on a plane, Andrew and I will toss a coin. The winner gets Charlie, the loser gets the other two.”

Alison admits that it hasn’t always been easy and says she was completely unprepared for how enrolling Charlie in mainstream school would affect her .

“The teachers were fantastic, but when the rest of the children were running out to show their mums what they had made, Charlie didn’t. I could see some of them thinking ‘oh, poor you’ and there were days when I just felt so I isolated it was awful.”

Over the years it has been the reaction of other people that has been the most infuriating and upsetting. It’s one of the reasons why the family are so keen to dispel some of the myths surrounding Down’s syndrome.

“Possibly the worse thing a complete strangers can say is, ‘Don’t worry love, you know they only give special babies to special people’. I’ll never forget when Charlie was younger and still prone to throwing himself on the floor in major meltdowns I’d often hear someone say, ‘‘Oh don’t tell him off, they don’t understand’. I’d turn round and say, actually his name’s Charlie and he absolutely does understand’.”

Alison occasionally goes back to both the hospital where Charlie was born and other maternity units to speak to new mums whose babies have also been diagnosed with Down’s syndrome. Typically she doesn’t sugar the pill. “I always say ‘look, it’s not ideal, none of us would have wished for it, but you know what it’s not the worst thing in the world. You just need to shift the goal posts’. The other thing I tell them is to develop a thick skin and fast. The first time I went to the shops with Charlie, I tried desperately not to make eye contact with other mums and their perfect children. But once I’d pulled myself together I realised I had just as much to be proud of.”

Charlie has inherited his dad’s love of sport. He’s a member of the Pontefract Pirates football club, plays basketball and recently became under 16 champion at indoor curling. He’s also recently started high school. After much agonising, Alison and Andrew opted to send Charlie to Highfield School. While it’s designed for children with special needs, many of the pupils are more intellectually capable than Charlie and they did worry he might be out of his depth. They needn’t have.

“When I kissed him goodbye on his first day he just wiped it off, grabbed his bag and shot off out the door,” says Alison, who gave up her scenes of crime officer for West Yorkshire Police. to work for the local disabled children’s charity Kids. It’s an organisation which has given the family a lot of support and while Charlie is now a happy, confident 11-year-old Alison knows the future will bring more difficult decisions.

“A lot of people say, ‘you must really worry about Charlie, much more than Lola and Travis’, but you know what? It’s just a different set of worries. We want him to be as independent as possible and we are keen that he has a job or does some volunteering. We want him to feel that he is able to give something back.”

It was partly why they encouraged him in 2012 to take part in the Jane Tomlinson Run for All. Charlie raised £1,500 by completing the 1.5k mini run and when he crossed the finishing line Alison couldn’t help but think of just how far her little boy had come

“Charlie’s Down’s Syndrome is such a tiny part of our lives - less than one per cent - we don’t even think about it any more. There’s a piece called Welcome to Holland which best sums up what it’s like to have a child with Down’s Syndrome. It’s like planning a trip to Italy, everyone else is going to Italy and saying how great Italy is. You get off the plane and realise you’ve landed in Holland. I never wanted to go to Holland, but there’s lovely things about it too.

“In fact there are some days now when I go into work and say, ‘You know what? Italy’s not all it’s cracked up to be, I much prefer the Dutch’.”

Tomorrow: Mother of five Mammy Davis on fleeing Liberia and finding peace in Yorkshire