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Understand Down Syndrome Through Books

by Dr Pallavi Bapat Pinge
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Down Syndrome (DS) or ‘Trisomy 21’ is a chromosomal/genetic disorder. It is characterized by presence of one extra chromosome at the 21st pair of chromosomes out of the 23 pairs of chromosomes in each cell of the human body. Hence, instead of the genetic make up of 46XX or 46XY, people with Down Syndrome have 47XX+21 or 47XY+21 in each of their cells.  The prevalence of Down Syndrome is approximately 1 in 900 live births irrespective of gender, race, ethnicity, maternal age.

Many of us might have come across children with Down Syndrome around us recognized by their peculiar physical features like flat facial profile, low muscle tone, broader and flat nose, upslanting eyes, low set ears, small mouth, thick tongue, overcrowding of teeth, shorter hands and short stature.  However, just like any other human being, people with Down syndrome are much more than their specific physical features.

And hence, we should go beyond the disability of a person and try to understand them as an individual, become aware of their difficulties and their strengths too. The month of October is ‘Down Syndrome Awareness Month’ and hence, we shall put light on some of the books which can be good source of information to become aware about DS.

  1. Resource Material For Parents Of Children With DS

There are books, which put light on development of kids with DS. These books are guides for parents to decide on planning home program for the child for engaging the kids, teaching them and even training them for various activities of daily living (ADL). Some titles that can be mentioned under this category are

 PARENT’S GUIDE FOR ENGAGING, TEACHING AND MANAGING KIDS WITH DOWN SYNDROME

‘TEACHING READING TO CHILDREN WITH DOWN SYNDROME’ by Patrician Logan Oelwein,

THE PARENT’S GUIDE TO DOWN SYNDROME’ by Jen Jacob and Mardra Sikora,

DOWN SYNDROME’ by Surekha Ramachandran,

‘BABIES WITH DOWN SYNDROME’ by Susan J Skallerup.

There are many books and can be explored by taking recommendations and suggestions from your doctor and therapists. 

  • Books Based On The True Lives Of People With Down Syndrome

Like any other disability, DS can be best understood by reading the accounts of the lives of people with DS.

COUNT US IN – Jason Kingsley, Mitchell Levitz .

This is one such book which describes the life of two young adults with DS and their experience of growing up with Down Syndrome. Their wit, intelligence and charm has won hearts amongst the readers.

SIX PERCENT – Down Syndrome My Photographs Their Stories by Graham Miller

This is a photographic book by Graham Miller showing black and white photos of 8 families with children with DS throughout their life span. The photos deliver strong messages and stories and give us an uplifting insight into the lives of these families.

MONGOL – Uuganaa Ramsay

It is a memoir of a mother living in a tribe in Mongolia and is born with a baby boy with DS and describes the challenges, difficulties she had as a family because of the developmental disability of her child. She narrates the trials and tribulations she has to go through in an imperfect society, being a mother to a child with disability.

  •  Picture Books For Children

For an inclusive society to develop, our kids need to be exposed to neurodiverse world through stories. Hence, picture books are the first friends to make, so that kids can make better friendships and be good support to kids with developmental disabilities in their lives. Some picture books illustrating the stories of children with DS are

SABEEL & HER SUPERHEROES – Ayah Sayeed

This book tells us about the people in life of a little girl with DS named Sabeel. How these people in her life become her superheroes have been beautifully illustrated in this picture book.

I DIDN’T UNDERSTAND- Mini Shrinivasan

Winner of 2020 FICCI Publishing Award, this picture book describes an everyday school story of a girl named Manna, who has Down Syndrome. The story describes small yet big experiences of a child around playing, friendships and bullying.

  •  Fiction (Young Adult & Adult)

This category of books has a varied collection of books to probe various nuances of emotions, relationships, families, struggles as well as strengths of people with Down Syndrome.

 DEAD ENDS – Erin Jade Lange

AN unusual friendship between two teenagers, Billy with DS, Dane with certain rules of life (don’t hit a special kid), embark upon a road trip to solve riddles in the life of Billy and how Dane realizes there is more to Billy than it seems.

HEAD ABOVE WATER – S. L. Rottman

This young adult fiction talks about the complex human relationships that a teenage girl goes through while having a sibling as a special child. The struggles of trying to be there for her brother and also having to cope up with the demanding expectations of high school.

THE MEMORY KEEPER’S DAUGHTER – Kim Edwards

This is a fiction book depicting a story of a father who makes a decision for the child at her birth and the lives of two families change for ever. With all the family drama in place, at one end this book depicts a family living with the grief of losing a child and a child growing up in a cold and mourning environment. On the other end, also shows the tender loving care a child receives even beyond her disability, thus bringing out the best out of the child.

SING FOX FOR ME- Sarah Kanake

A mystery is woven around the lives of twins, one of them having Down syndrome, and their adventure of meeting their granddad and living in mountains.

 JEWEL- Bret Lott

Based in the 1940s era, this book talks about the undying fighting spirit of a mother named Jewel who raises a child with Down syndrome named Brenda Kay amongst her 4 other neurotypical kids and does her best to give her child all the support.

Begin with any of these books and understand more about Down Syndrome and people with Down Syndrome. This is one of the initial steps of making our society more inclusive than it is today. To know more about Down Syndrome, people with Down syndrome and their associated features click on this YouTube link.

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