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The Looking Up Book: a picture of life with Down’s Syndrome

The looking up book

March 21st is World Down Syndrome Day (WDSD), a date in the calendar designed to raise awareness of the genetic condition which is caused by an extra chromosome. In the UK, about 750 babies with Down’s Syndrome are born each year and those with the condition are living longer and achieving more than ever before.

The Looking Up Book is a hardback book which aims to show what life with Down’s Syndrome is really like with pictures of children from birth to five years old enjoying everyday family moments. It is the brainchild of three members of the Cornwall Down’s Syndrome Support Group – Angie Emrys-Jones, Vicky Bundy and Sandy Lawrence.

Author Angie, 40, says: “The book is designed to show a positive but realistic journey of what your life is going to be like as the parent of a child with Down’s Syndrome. It shows the normal things like enjoying an ice cream – all the things that you want for your child.

“Those normal things can seem very far away when you are first told your child has Down’s Syndrome.”

“I was suddenly bombarded with information leaflets and given lots of dry information about what I could expect in terms of his health. He was barely an hour old and I was being given bleak statistics about his future with a lifelong disability.”

Angie’s story

Angie found out her second child Ted, now aged 10, had Down’s Syndrome after he was born.

She says: “I first found out Ted might have Down’s Syndrome in the delivery room and I wasn’t expecting it at all. It was a big shock.

“I was suddenly bombarded with information leaflets and given lots of dry information about what I could expect in terms of his health. He was barely an hour old and I was being given bleak statistics about his future with a lifelong disability.”

As Angie struggled to come to terms with her son’s diagnosis, she was visited by Karen Pooley, a neonatal nurse at the Royal Cornwall Hospital in Truro whose own grown-up daughter also has Down’s Syndrome.

“She talked to me about Ted and showed me her own family album,” says Angie. “The photographs she shared with me really made an impression and helped me to realise Ted was a baby and not a diagnosis.

“When I finally came up for air, I realised I wanted to help other parents. If I had known then what I know now, I would have cried less and celebrated more.

“Ted is a little boy who likes Batman and arguing with his two sisters. There is a great long list of things which make him who he is before you get to Down’s Syndrome.”

The Looking Up Book

With the help of Vicky and Sandy, Angie created the Looking Up Book, which is given out to new parents in Cornwall when they are told their baby has Down’s Syndrome. The book is put into a gift bag with presents for both mum and baby, hand-knitted clothes and a card saying congratulations.

Angie says: “When your baby has Down’s Syndrome, people don’t know whether to congratulate you or commiserate with you. We make a point of giving our pack to new parents as soon as possible and congratulating them on the birth of their baby.

“We want them to know it is going to be alright, it isn’t the experience they were expecting but it is still going to be alright. The book is realistic, lots of the children featured are tube-fed or have had heart surgery but it is about being a family and getting on with life.”

The Cornwall Down’s Syndrome Support Group has already supplied copies of the book to a number of other areas but the eventual aim is for it to be available to new parents all over the UK.

Angie says: “We want the NHS to make this national so every parent with a diagnosis can benefit. Our families tell us they get a lot of comfort looking through the pictures.

“There is something very special about having something in your hand. You can take the book to your grandma and she can see there are children in the book who are going to school and reading and writing.”

In fact, the book has been so successful since its launch in 2014 that a second edition is planned for next year and the group have also created a spin-off picture book called Going to School, which shows children with Down’s Syndrome enjoying a typical school day alongside their peers.

The book aims to promote inclusion in schools and will be given to every child preparing to start school in Cornwall over the next four years.

 
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