If you've recently received a Down syndrome diagnosis for your child, welcome. You might be feeling overwhelmed, scared, hopeful, uncertain -- or all of the above. Wherever you are on this journey, I hope you'll find something here that encourages you.
Below is a non-exhaustive list of organisations, websites, books, and personal stories that may be helpful as you begin navigating this journey.
Borne out of love and devotion by a group of parents of children with Down syndrome, Down Syndrome Association (Singapore) (DSA) is a non-profit social service agency established in 1995 and formally registered as a society on 16 September 1996.
Check out DSA's website for more information on the variety of services and resources that they offer across age groups.
Click on the title to directly access the website.
Work in progress...Coming soon!
This book is specifically written for expectant mothers who are preparing for the birth of a baby with Down syndrome. It will answer your pregnancy and birth questions, validate your emotions, provide coping advice, and give you hope for the future.
Click on the title to get to the website for free download.
This book offers support and accurate, reliable information to the new parents of a baby with Down syndrome. The book covers topics like breastfeeding, adjusting to a diagnosis, preparing siblings, understanding medical issues, preparing for the future, and, most importantly, it shares diverse stories about the daily lives of families whose children have Down syndrome at different ages.
Click on the title to get to the website for free download.
When you learn that someone you love is expecting a baby with Down syndrome, you naturally have concerns, and wonder what to say and do. This book will help you through your initial, normal reactions of sadness, shock, and worry, and give you the information and perspective you need to welcome a baby with Down syndrome.
Click on the title to get to the website for free download.
This commemorative 10th anniversary edition of Gifts includes 10 new personal stories, along with where-are-they-now updates on many of the children and families featured in the first edition. Gifts is the much-loved collection of over sixty essays written by mothers who share their truths about raising children with Down syndrome. Powerful then and powerful now, it affirms over and over that a life with an extra chromosome is one worth living.
Click on the title to get to the website for free download.
This book offers inspired takes on a host of important issues, from learning to recognize and celebrate your child’s personality and gifts to finding a great teacher for him, and from insisting your child pull his own weight to giving your child his space as an adult. The author—equal parts mentor, humorist, enthusiast, and realist—takes readers by the hand and walks them through the various life stages, experiences, and people they will encounter with their child including: getting to know and fall in love with your child, interacting with medical professionals, literacy, discipline, school, transitioning, and independence.
A mother’s deeply moving account of raising a son with Down syndrome in a world crowded with contradictory attitudes toward disabilities.
A children’s picture book about the remarkable lessons to be learned from a little girl named Tessa, who was born with Down syndrome. 47 Strings is a beautifully illustrated book for children of all ages.
This book offers support and accurate, reliable information to the new parents of a baby with Down syndrome. The book covers topics like breastfeeding, adjusting to a diagnosis, preparing siblings, understanding medical issues, preparing for the future, and, most importantly, it shares diverse stories about the daily lives of families whose children have Down syndrome at different ages.
Isabelle and Charlie are friends. They both like to draw, dance, read, and play at the park. They both like to eat Cheerios. They both cry if their feelings are hurt. And, like most friends, they are also different from each other. Isabelle has Down syndrome. Charlie doesn't. Written by Isabelle's mother, this charming tale encourages readers to think about what makes a friendship special. My Friend Isabelle also opens the door for young children to talk about differences and the world around them.
(Please note that these are not prescriptive, just books I have personally found insightful for me as I deepen my own knowledge of Down syndrome.)
Gross Motor Skills in Children with Down Syndrome, by a physical therapist with 16 years of experience offers over 100 illustrated activities to support motor development from birth to age six. Covering skills like sitting, walking, jumping, and riding a tricycle, the book explains how traits such as low muscle tone and flexibility can affect progress and provides strategies to address them. Emphasizing individualized pacing, it guides parents and professionals through each stage of motor development with practical exercises to build strength, coordination, and confidence.
Available to borrow from the resource library from Down Syndrome Association Singapore
Written for parents, health professionals, and teachers, this is a practical and accessible guide to understanding and developing fine motor skills in children with Down syndrome. The author draws on her expertise as a seasoned occupational therapist and parent to show readers how to help children develop the hand skills required for such tasks as holding pencil, cutting with scissors, or using a computer. Especially valuable is the book's sensitivity to the medical, physical, and psychological characteristics of children with Down Syndrome and how these can affect motor development.
Available to borrow from the resource library from Down Syndrome Association Singapore
Libby Kumin explains the role of SLP (speech-language pathologist), the stages of communication development, and how certain characteristics of down syndrome, such as low muscle tone, hearing loss and cognitive delays, can slow progression of those skills.
Available to borrow from the resource library from Down Syndrome Association Singapore
It Takes Two to Talk gives parents the tools to make early language intervention a natural, ongoing part of everyday life with their child. New checklists and goal charts in the first chapter make it easier for parents and professionals to identify the child's stage of communication and choose the most appropriate interaction and communication goals right from the start. With a heightened focus on helping children initiate, take turns in enjoyable, extended interactions and increase their expressive language skills, the It Takes Two to Talk guidebook shows parents how to use responsive interaction strategies that increase children's language skills. Written in simple language and beautifully illustrated, this guidebook shows parents how to integrate It Takes Two to Talk strategies into everyday routines like mealtime, bath, time, play, time and book reading.
Available on shelves at NLB, or borrow via Libby app
Redefining the Reality of Down Syndrome; The Power of an Integrative Mindset is a unique book for parents who refuse to settle for the limitations often associated with Down syndrome.
Drawing from her extensive background in Occupational Therapy and her personal journey as a mother, Geralyn Spiesz empowers you to take control of your child's future by blending your expert knowledge of your unique child with such individualized approaches as neurodevelopment, epigenetics, neuroplasticity, functional medicine, and nutrition, to list a few.
Geralyn's story began with the birth of her son, Lucas, in 2007, when she was given all the lists of what to expect, and encouraged to embrace a "new normal." Unwilling to accept this narrative, she embarked on a relentless quest to find answers-ones that would not only enhance her son's development but redefine what Down syndrome could mean for him and their family.
If you're already on this journey and have suggestions for the list of resources above, please let me know via email or Instagram.