Resources

Down Syndrome

Lending Library items are available to be checked out for two weeks to all North Dakota residents.

Handouts are available in either print or digital format. Printed handouts are free to keep. Digital materials are available to download at your convenience.

Online Resources include webinars, videos, website links, and other digital and web-based content. Click on a resource's title to go to that resource.

Lending Library - Books (21)

Lending Library - DVDs (9)

Handouts (1)

Online Resources (1)

Books

A Special Kind of Hero
by Chris Burke and Jo Beth McDaniel
The star of TV's "A Life Goes On" tells his remarkable story. "A Special Kind of Hero" is the story of triumph, hope, determination and the power of a loving family. Most important, it's a wonderful example to all of us that dreams really can come true. (parents & professionals)

Adolescents with Down Syndrome
by Siegfried M Pueschel and Maria Sustrova
Caring and compassionate, this book takes a holistic approach to the issue, focusing on the person with Down syndrome. Experts from diverse backgrounds provide information and perspective on biomedical, psychological, social, sexual, behavioral, educational, vocational, recreational, and legal concerns.

Adults with Down Syndrome
by Siegfried M. Pueschel
People with Down Syndrome are living longer, fuller lives than ever before - and this book is the first comprehensive book on the social, clinical, legal, and personal issues these individuals will navigate. The author blends contributions from respected professionals with insightful first-person essays by adults with Down Syndrome themselves.

Babies With Down Syndrome: A New Parents' Guide
by Susan J. Skallerup
"Babies with Down Syndrome" is an important resource for parents who want the best for their babies, and for the teachers and therapists who will work with them as these babies grow into early childhood. Gives a thorough and thoughtful presentation of essential information, and every bit of it is loaded with the kind of comfort and encouragement that can only come from parents of children with Down syndrome.

Communication Skills in Children with Down Syndrome
by Libby Kumin
An expert shares her knowledge of speech and language development in children and adolescents with Down Syndrome. a wealth of accessible information and advice, plus practical home activities. (parents & professionals)

Count Us In
by Jason Kingsley and Mitchell Levitz
Two young man talk openly about growing up with Down Syndrome.

Fasten Your Seatbelt
by Brian G. Skotko & 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 sibling relationships get even more complicated, especially for teenagers. This book is a complete guide to the joys and challenges of growing up with a brother or sister who has Down syndrome.

Fine Motor Skills for Children with Down Syndrome
by Maryanne Bruni
Fine Motor Skills For Children with Down Syndrome explains the best practices and procedures for helping children master the finger and hand skills needed for home and school activities. Written by an occupational therapist who has worked extensively with children with Down Syndrome, and is also the mother of a teenager with Down Syndrome, this book presents a thorough overview of fine motor development and how the characteristics of Down Syndrome can impact the acquisition and progression of fine motor skills.

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives
by Kathryn Lynard Soper
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.

Gross Motor Skills for Children with Down Syndrome
by Patricia C. Winders
This thoroughly updated new edition is the definitive resource on gross motor development and physical therapy for children with Down syndrome. Beginning with an infant's very first movements and progressing through each major gross motor milestone, it explains why motor delays occur and presents a comprehensive PT treatment plan from birth through age six.

I Can, Can You?
by Marjorie W. Pitzer
Come along with these babies and toddlers with Down Syndrome as they discover their world and enjoy new experiences. They say, "I can swim. I can play patty-cake. I can share". Bet you can too!

Medical & Surgical Care for Children with Down Syndrome
by Van Dyke, Mattheis, Eberly, Williams
This book is designed to provide a resource for parents of both infants and school-age children with Down Syndrome. The chapters cover everything a parent might wish to know, from immunizations to the latest treatment for leukemia. (parents & professionals)

Medical and Surgical Care for Children with Down Syndrome
by D. C. Van Dyke, Philip Mattheis, & Susan Schoon Eberly
This guide eliminates the need for parents to scour medical texts and journals in search of information they can understand about their child's medical condition. Easy-to-read and well-organized, the book covers medical treatments and conditions-from heart disease to skin conditions-more common among children with Down syndrome.

Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges
by Dennis McGuire & Brian Chicoine
Mental Wellness in Adults with Down Syndrome is an invaluable resource for parents, mental health professionals, teachers and caregivers who want to understand better how to promote mental health and resolve psychosocial problems in people with Down syndrome. An easy-to-read guide clarifies what are the common behavioral characteristics of Down syndrome, how some can be mistaken for mental illness, and what are the bona fide mental health problems that occur more commonly in people with Down syndrome.

Road Map to Holland
by Jennifer Graf Groneberg
Rich with honesty, wisdom, and a deep appreciation for everyday miracles, Road Map to Holland is a thoughtful, moving mediation on the struggles and joys the author and her family experienced during her son Avery's first two years. Groneberg offers a wealth of insight, information, and even practical resources for families whose children have Down Syndrome. Yet this book is first and foremost a story about the constant discovery of love, and it will resonate with every reader who has traveled the always unpredictable, often overwhelming, wonder-filled journey into parenthood.

See and Learn First Word Pictures

See and Learn First Word Pictures is the first step in the See and Learn Language and Reading program - a series of activities specially developed to help children who have Down syndrome learn to talk and to read. It is designed for children who are at the first stage of learning language. It contains activities and resources to help children learn 60 common first words using pictures.

See and Learn First Written Words
Down syndrome Education USA
See and Learn First Written Words is the second step in the See and Learn Language and Reading program- a series of activities specially developed to help children who have Down syndrome learn to talk and to read. See and Learn First Written words uses reading as a support to language development. It will help your child learn to read 16 familiar written words and also to develop his/her understanding and use of 34 phrases containing two key words. Designed for children who have already completed See and Learn First Word Pictures and so already understand more than 50 single words and are able to match pictures.

See and Learn More Word Pictures
Down syndrome Education USA
See and Learn More Word Pictures is the third step in the See and Learn Language and Reading Program-a series of activities specially developed to help children who have Down syndrome learn to talk and to read. It uses visually-based matching, selecting and naming activities to help children learn 55 new words that are common in early vocabularies.

The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles
by Joan Guthrie Medlen
This one-of-a-kind book is the first to provide information, strategies, and tools to promote healthy living for people with Down syndrome, their families, and those who support them. Using her knowledge and expertise as a registered dietitian and experiences as a mother of a son with Down syndrome, autism spectrum disorder, and celiac disease, Joan Guthrie Medlen has blended intricate science with practical use to create a book that is indispensable. Medlen encourages parents and professionals to start teaching healthy habits early, yet stresses it is never too late to make changes.

Understanding a Down Syndrome Diagnosis
lettercase.org
A booklet to talk about getting an initial diagnosis. First half is in English, second half is written in Spanish.

Understanding Down Syndrome: An Introduction for Parents
by Cliff Cunningham
Highly acclaimed when first published in Britain, this practical and sympathetic book for new parents has become an accepted introductory work on the subject. Besides helping parents and beginning practitioners understand the causes and characteristics of the condition, this book includes information about the latest methods of treatment, advice on care of both the young child and the older person, professional guidance and how to obtain it, and the details of techniques of prenatal testing. (parents & professionals)

DVDs

Dakota's Pride: One Father's Search for the truth about Down Syndrome
1 hour
Dakota's Pride is a heartwarming documentary about a father's search for the truth about Down Syndrome. Tough questions are posed to and answered by a noted Harvard Physician, and parents of children with Down Syndrome. The answers are surprising and inspiring. In addition to being informative, this documentary celebrates the successes that have been and can be achieved by individuals with Down Syndrome.

Discovery: Pathways to Better Speech for Children with Down Syndrome
81 minutes
It is essential to lay the foundation for speech development as early as possible for children with Down syndrome. The latest research shows that an integrated approach to speech development is most effective, including the combined use of spoken words with sign language and text, paying attention to hearing loss, and addressing intelligibility issues. Now, parents who are looking for information and guidance on their child's speech development have a new resource to rely on. An international group of experts on speech development and Down syndrome discuss their methods and explain how to put them into practice. Additionally, the DVD features knowledgeable parents who comment on what techniques and approaches have worked best for their children. And children with Down syndrome also appear throughout the DVD, demonstrating the range of achievement that parents can expect.

Educating Peter
30 minutes
In this revealing DVD, Peter, a young boy with Down syndrome and his classmates test the limits of a new federal law that requires mainstreaming disabled children in public schools. It chronicles the school year of Mrs. Stalling's third grade class. However, after many tribulations and a great deal of planning, Mrs. Stallings and the students (and Peter) discover the triumphs and rewards of educating Peter.

Emma's Gift
1 hour
Director John Disher tells the story of Emma - an amazing little girl born with Down Syndrome, her twin sister Abigale, and their parents, Mitzi and Michael. This incredible family soon discovers Emma's differences are precious gifts that will take them on a journey few families ever experience.

Imagine the Possibilities
14 minutes
This documentary tells the story of Karen Gaffney and Team Gaffney's relay swim across the English Channel, an amazing story of teamwork and community inclusion.

Journey of a Lifetime: Beginning with the End In Mind
64 minutes
This DVD is for parents who have learned that they will soon have, or have just had, a child born with Down Syndrome. It is also a valuable tool for family members, close friends, doctors, teachers, genetic counselors and other professionals who are providing information and support to parents at this critical time.

Opening Doors of Tomorrow, Today
24 minutes
Geared toward educators and paraprofessionals, this DVD focuses on the keys to successful inclusion from the student's point of view. Dr. Jean Edwards, Ph.D., Special Education Professor at Portland State University was kind enough to lend her classroom of education students who have the opportunity to ask Karen Gaffney about inclusive classroom settings and what worked for her. Karen delivers a polished presentation full of important information for both families and educators.

The Teachings of Jon
45 minutes
This soul-touching and funny documentary about Jon, a 40 year old man who is severely affected by Down Syndrome, ponders the serious questions of how we value each other and what is truly important in life.

What Did You Say: A Guide to Speech Intelligibility in People with Down Syndrome
Libby Kumin, Ph.D.
This informative film looks at the importance of speech intelligibility (clear speech) for people with Down syndrome. It features the author (Dr. Libby Kumin) and dozens of children and young adults. Explains the various factors underlying speech intelligibility problems common in Down syndrome.

Handouts

Down Syndrome
CPIR
Fact sheet from CPIR on Down syndrome. (English)
Download

Online Resources

Designer Genes of North Dakota
Agency/Organization

Designer Genes strives to provide support, information, education and advocacy to families and persons with Down syndrome, as well as those supporting them, their friends and professionals.

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Recursos en espanol (Resources in Spanish)