When you are an expectant parent, you have dreams of what your baby and your family will look like. Will he have his dad’s mass of curly blonde locks? Will she have mom’s sunny smile and deep brown, all-knowing eyes? Will he love to putter in the kitchen, “helping” to prepare dinner? Will she shine on the football field as her dad did as a youngster?
Receiving a prenatal or antenatal diagnosis of Down syndrome can cloud those dreams, as many new parents have not had the opportunity to engage with children or young people with Down syndrome. Luckily, the Cornwall Down Syndrome Support Group (CDSSG) charity made it their mission to provide real life, positive imagery about what family life with Down syndrome actually looks like. Their Looking Up book series, co-authored by Angie Emrys-Jones in collaboration with social, medical, and educational experts in the research and study of Down syndrome, offers a glimpse into what life is like at all stages for a family just undertaking the journey.
Angie shares, “Back in 2014, we realised the need to balance the dry, medicalised, often negative information that abounded in leaflets given to new families. Particularly elusive was information on the lived reality of contemporary family life — birthday parties, family holidays, Cubs and Brownies — the everyday stuff of life that, in the raw newness of receiving the news that your child has a lifelong disability, suddenly seems very far away.” So Angie set about changing the narrative by creating the first book in the Looking Up series. Each page tells the story, in pictures, of the first five years of life of a child with Down syndrome, not posed pictures but real snaps of ice creams on the beach, bike rides, muddy walks in the woods, all the everyday things families do in life. “This book tells parents, ‘You’re going to be okay,’” Angie says.
The earth will keep turning and the sun will rise tomorrow, and you will be a family just like you planned, only with a little extra, explains Angie.
A Looking Up book is gifted to every set of new parents of babies born with Down syndrome in Cornwall via a new parent gift bag. “The bag contains all of the things you’d traditionally give any new family, and that’s important,”
This is a celebratory birth like any other, says Angie.
Parents have fallen in love with the book the minute they received it. Zoe and Charlie said, “The positivity in the Looking Up book gave us so much excitement for what our future would hold with Mylo.” Another parent shared, “Receiving the Looking Up book and pack was like being given permission to celebrate, when we were hesitant to know what to do, say, think, or feel next.”
Based on parents’ reactions, a second book in the series was created, Going to School. Again, using only photographs, it tells the tale of a typical school day where children with Down syndrome learn alongside their peers in the classroom, enjoying physical education, lunchtime play and numeracy. Thanks to the fundraising efforts of CDSSG families, Going to School is gifted to every preschool child in Cornwall via Bookstart Treasure packs — over 30,000 have been distributed in the last three years. A Makaton download accompanies the book which holds all of the signs and symbols to support communication about the school day.
A third book, Tea at Grandma’s, is “a wonderful hug of a book,” according to Angie,
showing the depth of the bond between grandparent and grandchild and helping grandparents to support the new family. In 2020, two additional Looking Up books have been launched. Looking Up 2 is an updated version of the first book, showing Down syndrome families living their best life, from potties, breast feeding, and first steps to preschool graduations. Book five is a collaboration with the National Health Service, Going to Hospital, showing children and young people in pictures what they might encounter during a hospital visit. Funding from the Down Syndrome Research Foundation, Mencap and Royal Cornwall Hospital provides Going to Hospital and its accompanying Makaton download free of charge.
For more information on the Looking Up book series and related organisations, visit the following links:
Looking Up Books Shop
Going to Hospital Resources, Digital Book
Written by Angie Emrys-Jones.
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