If you have just received a diagnosis that your baby has or will be born with Down syndrome, you are likely shocked, frightened, and searching for answers. Those feelings are completely normal, but it is my experience that those initial feelings are very misleading. I have also come to learn that not all doctors are well informed to be able to assist you in learning about what you, your baby, and your family might face. So we have tried to share here some of the better resources we have found and others that were recommended to us.

You may also reach out to us at sandythewondermom@gmail.com or follow us on Instagram at @MaraTheWondergirl and @SandyTheWondermom. This is not easy news to hear, but the answers are better than you think. If it would help you to have someone to talk to, please feel free to reach out.

New Parent Package: 21 Welcomes

This New Parent Package from the Canadian Down Syndrome Society is excellent. Whether you had a birth diagnosis or a prenatal diagnosis, there are a lot of stories here to help you better understand that there is a lot of light ahead even if you now feel stuck in darkness. This is an excellent place to start. You will begin to have hope after reading these stories.

Positive about Down syndrome

Positive about Down syndrome website is by a UK based group that features stories about children, young people and their families. It is by parents of children and young people with Down Syndrome for those considering screening, are new parents of a little one with Down Syndrome or have received a positive result for DS, to show the reality of their lives.

Down Syndrome Answers

Down Syndrome Answers is an excellent initiative by the Canadian Down Syndrome Society to provide answers to the questions asked by those who face the uncertainties of a Down syndrome diagnosis. It features 42 YouTube videos where people with Down syndrome answer frequently asked questions. The videos answer parents’ common questions and dispel misconceptions about Down syndrome.

Talking About Downs Syndrome – Conversations for New Parents

Available from Fink Cards By Hayley Goleniowska

48 conversation cards to help new parents

• separate the facts from the myths about Down’s syndrome
• talk through feelings and concerns after a new diagnosis of Down’s syndrome 
• get the early support and intervention they need as a family

Down’s syndrome, or Trisomy 21, is the most common chromosomal condition that occurs naturally in around 1 in every 1,000 births. There are more than 4 million people with Down’s syndrome around the world. There are many outdated stereotypes that surround Down’s syndrome, this pack is designed to help new parents cut through that to find the early years support they need to get their baby off to a great start in life.

BOOKS

Bloom: Finding Beauty in the Unexpected

Bloom is an inspiring and heartfelt memoir that celebrates the beauty found in the unexpected, the strength of a mother’s love, and, ultimately, the amazing power of perspective. The author of the popular blog Enjoying the Small Things—named The Bump’s Best Special Needs Blog and The Blog You’ve Learned the Most From in the 2010 BlogLuxe Awards—Kelle Hampton interweaves lyrical prose and stunning four-color photography as she recounts the unforgettable story of the first year in the life of her daughter Nella, who has Down syndrome. Poignant, eye-opening, and heart-soaring, Hampton’s Bloom is ultimately about embracing life and really living it.

An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter

Jillian Daugherty was born with Down syndrome. The day they brought her home from the hospital, her parents, Paul and Kerry, were flooded with worry and uncertainty, but also overwhelming love, which they channeled to “the job of building the better Jillian.” While their daughter had special needs, they refused to allow her to grow up needy—“Expect, Don’t Accept” became their mantra. Little did they know how ready Jillian was to meet their challenge.

Paul tells stories from Jillian’s mischievous childhood and moves to her early adulthood, tracing her journey to find happiness and purpose in her adult life, sharing endearing anecdotes as well as stories about her inspiring triumphs. Having graduated from high school and college, Jillian now works to support herself, and has met the love of her life and her husband-to-be, Ryan.

In An Uncomplicated Life, the parent learns as much about life from the child as the child does from the parent. Through her unmitigated love for others, her sparkling charisma, and her boundless capacity for joy, Jillian has inspired those around her to live better and more fully. The day Jillian was born, Paul says, was the last bad day. As he lovingly writes, “Jillian is a soul map of our best intentions”—a model of grace, boundless joy, and love for all of us.

The Lucky Few: Finding God’s Best in the Most Unlikely Places

When Heather started her journey into parenthood she never thought it would look like this, never planned to have three adopted children, and certainly never imagined that two of them would have Down syndrome. But like most things God does, once she stepped into the craziness and confusion that comes with the unknown and the unplanned, she realized that they were indeed among the lucky few.

Discover in this book what 70,000+ followers of Heather’s hit Instagram account @macymakesmyday already know: the power of faith and family can help us stay strong in the toughest times. This book will also be especially touching to those with adopted family members or children with Down syndrome in their lives.

How Smart is Your Baby?

The first months after birth are vital to the long-term well-being of a child. Yet parents do not have the information they need to make their baby’s life as stimulating as it should be. How Smart Is Your Baby? provides parents with all the information required to help their baby achieve full potential. The authors first explain infant growth, and then guide parents in creating a home environment that enhances brain development. A developmental profile allows parents to track their child’s progress, determine strengths, and recognize where additional stimulation is needed.

47 Strings

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.

We’ll Paint the Octopus Red

As six-year-old Emma anticipates the birth of her new baby brother or sister, she vividly imagines all of the things they can do together. Emma feels ready to be a big sister! Then when the baby is born, her dad tells her that it’s a boy and he has something called Down syndrome. Finally she asks, “If Isaac has this Down thing, then what can’t he do?”. Her dad thinks about it, then tells her that as long as they are patient with him, and help him when he needs it, there probably isn’t anything Isaac can’t do. In this touching story, Emma helps her father as much as he helps her to realise that Isaac is the baby they dreamed of. The book concludes with a set of commonly asked questions about Down syndrome with answers for children and how it might affect their sibling and family. For ages 3-7.

#NobodyToldMe

This book was created by the organizers of Positive About Down Syndrome and with contributions of more than 120 people. It is a collection of personal experiences written by young people with Down syndrome, family members & friends reflects the reality of their lives. It includes teenagers sharing their aspirations for the future and young people with Down syndrome giving an insight into their everyday lives.

“This book will enlighten, educate and empower all those who read it – whether you already love someone with Down syndrome or not, by the end you will fully understand why we’re so proud to be Positive about Down syndrome!”

View as a flip book online: https://positiveaboutdownsyndrome.co.uk/nobodytoldme/

Or order a copy from: https://gumroad.com/products/MtEBi

INSPIRING STORIES

Grace Strobel

First model with Down syndrome to represent a beauty brand in the United States.

Chris Nikic

First person with Down syndrome to complete an Ironman race.

AnnaRose Rubright

First person with Down syndrome to graduate from Rowan University.