Introduction to Down Syndrome

DOWN SYNDROME PARENTING 101 by Natalie Hale

(About.com 2012 Readers' Choice Award Winner, Favorite New Special-Needs Parenting Book!)

DOWN SYNDROME PARENTING 101 is a savvy book for parents, grandparents, teachers, and anyone who shares life with a person with Down syndrome! It's full of uplifting advice and best practices gleaned from the author's personal and professional experiences raising a son, now an adult, and teaching educators and parents how to teach children with Down syndrome to read.

DOWN SYNDROME PARENTING 101 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.

 

BABIES WITH DOWN SYNDROME by Susan Skallerup

2009 IPPY Award Winner: Silver Medalist, Parenting/Family category

BABIES WITH DOWN SYNDROME, the trustworthy guide which has benefited thousands of families since it was first published in 1985, is completely revised and updated in a new, third edition. Covering the best practices for raising and caring for children with Down syndrome through age five, this book is invaluable to new parents who have welcomed a baby with Down syndrome into their lives.

This new edition incorporates the latest scientific, medical, educational research, and practical information available, as well as parents’ suggestions and feedback. Existing chapters have been revised, some completely rewritten by new authors, and in keeping with its parent-friendly reputation, most of the book’s contributors are parents of children with Down syndrome.

 

THE DOWN'S SYNDROME HANDBOOK by Richard Newton

Combining medical knowledge with sympathetic common sense, this completely updated comprehensive handbook offers help and advice to all parents and carers of children with Down's syndrome, and shows them how to help their children flourish and reach their full potential. Written in association with the Down's Syndrome Association, this book goes beyond the average introduction to Down's syndrome and addresses the questions, practical or otherwise, that parents will often find themselves asking, and also offers information and advice on a wide variety of related issues, including:--current medical knowledge about the condition--advice on the special care of babies and young children--education and training--emotional and sexual development--integration into society.

 

Teaching Children With Down Syndrome

EARLY COMMUNICATIONS SKILLS FOR CHILDREN WITH DOWN SYNDROME by Libby Kumin

Newly revised and updated, this compassionate and authoritative guide is based on Libby Kumin's thirty years of experience of working with children and adolescents with Down syndrome and their families. Dr Kumin draws on her vast experience to show parents how they can support and encourage their child's speech and language development from birth to age 6 (or when a child can form 2- to 3-word sentences). Parents and teachers learn how to work through characteristic challenges, including hearing loss, intelligibility issues, apraxia (difficulty planning oral-motor movements), or a slower pace of development. Families soon see that many children with Down syndrome are natural and willing communicators.

In a warm and conversational style, the author shares her professional expertise in parent-friendly terms. She uses specific examples of difficulties and successes to illustrate the concepts behind speech and language development, and includes the latest research supporting current early intervention and pre-school approaches that can be used at home and in schools.

 

FINE MOTOR SKILLS  FOR CHILDREN WITH DOWN SYNDROME by Maryanne Bruni

The updated and expanded 2nd edition of "Fine Motor Skills in Children with Down Syndrome" continues to be a popular, practical guide to understanding fine motor skills in children with Down syndrome and helping them develop these skills from birth through early adolescence. The first edition won a Parent's Choice Award in 1999. The author, an occupational therapist who has worked extensively with children with Down syndrome, is also the parent of a teenager with Down syndrome. She offers parents and professionals dozens of easy, home-and school-based activities, illustrated with black and white photos, which help children gradually acquire the skills they need for fine motor development. Readers learn how to incorporate work on fine motor skills into everyday activities and routines and to emphasize tasks that children can use throughout life - play, self-help, printing, cutting with scissors, and computer use. New to this edition is a chapter on sensory processing and how the sensory system affects behaviour and learning in children with Down syndrome. Parents learn strategies that can help children handle various sensory problems so they can continue to learn daily living skills.

 

GROSS MOTOR SKILLS  FOR CHILDREN WITH DOWN SYNDROME by Libby Kumin

 This thoroughly updated second edition is a cornerstone of Woodbine House's Down syndrome collection and an essential resource for thousands of parents and professionals.

In parent-friendly language, the author explains the many physiological reasons that children with Down syndrome experience delays in their gross motor development and presents a physical therapy treatment plan from birth to age 6. Over 200 photos accompany step-by-step instructions to help readers assess a child's gross motor readiness and teach skills for head control, sitting, crawling, standing, walking, using stairs, running, kicking, jumping, and riding a tricycle.

This second edition features additional activities, many new photos, info on transitioning from trikes to bikes, tips to address problems such as flat feet, and tendencies to watch for that can thwart development. Use this comprehensive and encouraging resource to get started working on your child's gross motor development and to supplement physical therapy.

 

Books From Parents

SUN SHINE DOWN by Gillian Marchenko

What if? What if you dreamed of having a beautiful child and in your mind you saw the life you'd share with that child. First steps, little league (or ballet). Maybe the child would play piano or make you proud on the Honor Roll. There'd be eventual graduations, college, even marriage and grandchildren. You might dream it out that far. Or not. Every parent has hopes. No parents wish for pain—their own, or a child's. Then you had a premature delivery in a foreign country. And the words swirling around you said a different kind of "what if." What if something was wrong? The dream was at risk—or so it seemed. Would you be ready for that? Could you make peace? Or would it take you down? These are the questions author Gillian Marchenko faced as she woke up after an emergency C-section in Ukraine. Only her newborn child could answer them, in time. But first she had to find a way to hear more than the words "Down syndrome." 

 

GIFTS by Kathryn Lynard Soper

(2008 National Parenting Publications Awards (NAPPA): Gold Award; 2008 Mom's Choice Awards: Silver Recipient, Special & Exceptional Needs; 2008 Nautilus Award: Silver Winner, Memoir/Personal Growth)

Having a baby with Down syndrome is not something most parents would willingly choose. Yet many who travel this path discover rich, unexpected rewards along the way.

In this candid and poignant collection of personal stories, sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love, which their child with Down syndrome has brought into their lives. The contributors to this collection have diverse personalities and perspectives, and draw from a wide spectrum of ethnicity, world views, and religious beliefs. Some are parenting within a traditional family structure; some are not. Some never considered terminating their pregnancy; some struggled with the decision. Some were calm at the time of diagnosis; some were traumatized. Some write about their pregnancy and the months after giving birth; some reflect on years of experience with their child.

Their diverse experiences point to a common truth: the life of a child with Down syndrome is something to celebrate. These women have something to say--not just to other mothers but to all of us.

 

THE ROAD MAP TO HOLLAND by Jennifer Graf Groneberg

An exceptional memoir that provides emotional insight and practical advice.

It's like planning a trip to Italy, only to get off the plane and discover you're actually in Holland. You need a new road map, and fast...

When Jennifer Groneberg and her husband learned they'd be having twin boys, their main concern was whether they'd need an addition on their house. Then, five days after Avery and Bennett were born, Avery was diagnosed with Down syndrome.

Here, Jennifer shares the story of what followed. She dealt with doctors-some who helped, and some who were disrespectful or even dangerous. She saw some relationships in her life grow stronger, while severing ties with people who proved unsupportive. And she continues to struggle to find balance in the hardships and joys of raising a child with special needs. This book is a resource, a companion for parents, and above all, a story of the love between a mother and her son-as she learns that Avery is exactly the child she never knew she wanted.

 

MY EMILY by Matt Patterson

Honorable Award Winner - 2012 Reader's Favorite Book Awards
Finalist - 2012 National Indie Excellence Book Awards

Finalist - 2012 Next Generation Indie Book Awards

This book tells the story of a hurting family, an amazing little girl and a mysteriously faithful God. Emily wasn't born perfect - so one might think.  She was born with Down Syndrome and many would jump to the conclusion that she would have very little hope for a life with any significance. Two years later came the diagnosis of leukemia. What little hope remaining turned to no hope whatsoever - or so one might think.

The life of this little girl, with all its perceived imperfections, had great meaning. Her loving nature and courage touched the hearts of everyone she met. She also taught them how to value their own lives - even with their many "imperfections."

For Siblings, Relatives, and Friends

 

MY FRIEND HAS DOWN SYNDROME by Jennifer Moore-Mallinos and Marta Fabrega

The sensitively written Let's Talk About It Books encourage preschool-age and early-grades children to explore their feelings, deal with problems that trouble them, and understand others who have problems of their own. Each title speaks to a particular concern that children might encounter in the course of growing up. All books in this series have appealing color illustrations on every page, and are available in both English and Spanish language editions. A short section at the back of each book offers related advice to parents. My Friend Has Down Syndrome explores this common chromosomal condition from a child's perspective. Younger children may be confused and have many questions when they encounter kids who have Down syndrome. Here, in this reassuring story, two children, one with Down syndrome and one without, learn that they are both good at different things and that by helping each other overcome their fears and difficulties they can accomplish a great deal together.

 

WE'LL PAINT THE OCTOPUS RED by Stephanie Stuve-Bodeen and Pam Devito

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 realize 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.

 

THE LITTLE KING AND HIS MARSHMALLOW KINGDOM by Louis Rotella III

 King Louie the IV rules over Marshmallow Kingdom where the sun always shines and every meal is a picnic -- with yummy marshmallows for dessert. Follow King Louie as he helps his friends understand that even though he is unique and different, he still loves to do kid-like things!

 About the author: Louis Rotella III first met his son, Louie, on September 14, 2000. From the moment he heard the news that Louie was born with Down Syndrome, Louis has found reason to celebrate. He and his wife, Jill, have two other children. Louie Rotella IV loves to play soccer and enjoys attending church services where he likes to think that when the congregation sings "Hallelujah," they are really singing, "Hah-lay-Louie." His inspirational story teaches children and adults alike to embrace self-acceptance.

 

MY FRIEND ISABELLA by Eliza Woloson and Bryan Gough

(2004 iParenting Media Award Winner)
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. It's a wonderful story to read at bedtime or to share at school. Lively full color illustrations dovetail beautifully with the text to bring the simple story to life.

 

FASTEN YOUR SEATBELTS by Brian Skotko and Susan P. Levine

Even the closest brothers and sisters don't always get along or understand each other. Add a disability like Down syndrome to the mix, and that sibling relationship gets even more complicated, especially for teenagers. This is the first book written exclusively for teens with a brother or sister with Down syndrome. In an easy-to-read, question & answer format, it tackles a broad range of their most common issues and concerns. Nearly 100 questions - all posed by teen siblings - are grouped into the following categories: facts and statistics about Down syndrome; how people with Down syndrome learn; handling parent and family conflicts; dealing with your sibling's frustrating behaviours; managing uncomfortable situations; sorting out your feelings; becoming an advocate; what the future holds for you and your sibling; and, finding local and national resources. Thoughtful, knowledgeable answers are provided by Brian Skotko, the brother of a young woman with Down syndrome, and Sue Levine, a social worker focused on sibling issues for the past 30 years. This book gives teens the green light to explore their own feelings and questions about their sibling with Down syndrome and how their relationship may change in the future.

 

THE SIBLING SLAM BOOK edited by Don Meyer

(2006 Independent Publishers Book Awards: Finalist in Juvenile-Teen-Y/A Non-Fiction category) Give teenagers a chance to say what's on their minds, and you might be surprised by what you hear. That's exactly what Don Meyer, creator of Sibshops and author of VIEWS FROM OUR SHOES did when he invited together a group of 80 teenagers, from all over the United States and abroad, to talk about what it's like to have a brother or sister with special needs. Their unedited words are found in THE SIBLING SLAM BOOK, a brutally honest, non-PC look at the lives, experiences, and opinions of siblings without disabilities. Formatted like the slam books passed around in many junior high and high schools, this one poses a series of 50 personal questions along the lines of: What should we know about you? What do you tell your friends about your sib's disability? What's the weirdest question you have ever been asked about your sib? If you could change one thing about your sib (or your sib's disability) what would it be? What annoys you most about how people treat your sib? THE SIBLING SLAM BOOK doesn't slam in the traditional sense of the word. The tone and point-of-view of the answers are all over the map. Some answers are assuredly positive, a few are strikingly negative, but most reflect the complex and conflicted mix of emotions that come with the territory. Whether they read it cover to cover or sample it at random, teenagers will surely find common ground among these pages and reassurance that they are not alone. It is a book that parents, friends, and counselors can feel confident recommending to any teenager with a brother or sister with a disability. Also by Don Meyer: