Resource Library

The lifespan of people with Down syndrome has more than doubled since the ‘80s and many are now outliving their parents. This invites opportunities and obstacles. Yet many families are unsure what to do and how to get started. This award-winning (Nonfiction Authors Assoc Gold Award 2023) guidebook provides step-by-step support to: Inspire mindset shifts toward one of independence and possibilities Foster independence building blocks from the earliest age Highlight health risks and financial resources every family must know Detail education and work options to promote and community inclusion Evaluate family- and community-based home options with a search process The Guide presents action items and worksheets to equip you with a clear timeline and path. The Resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.

Read the incredible story of Heidi and James, and their lives with Down's Syndrome. Follow their journey of heart-breaking, honest, and challenging moments, and discover how they live life to the fullest. I'm Just Heidi! is an inspiring story that will leave you feeling uplifted!

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.

With six other children at home, Kathryn Lynard Soper was prepared for the challenges another newborn would bring. But after Thomas's complicated birth, his diagnosis—Down syndrome—forced her to face her deepest fears and weaknesses, her ignorance and prejudice, and her limitations as a mother and as a human being. Her struggle, coupled with the demands of caring for a fragile baby and juggling her family's needs, sparked the worst episode of depression she'd experienced in decades. The Year My Son and I Were Born is Soper's brutally honest yet beautiful account of how she escaped a downward spiral of despair and emerged with newfound peace. Antidepressant therapy restored her equilibrium, and interactions with friends and family brought needed perspective. But the most profound change came through her growing relationship with Thomas. His radiant presence shone through her outer layers of self, where fear and guilt festered, and reached the center of her very being—where love, acceptance, and gratitude blossomed in abundance.

The mother of a child with Down syndrome describes her son's midwife-assisted birth, his back-to-nature upbringing, and her patient, positive, and spiritual approach to him and discusses amniocentesis, "special education," and a toxic environment.

A Publishers Weekly Best Book of the Year for Nonfiction "...an essential and engaging look at recent disability history."-- Buzzfeed One of the most influential disability rights activists in US history tells her personal story of fighting for the right to receive an education, have a job, and just be human. A story of fighting to belong in a world that wasn't built for all of us and of one woman's activism--from the streets of Brooklyn and San Francisco to inside the halls of Washington--Being Heumann recounts Judy Heumann's lifelong battle to achieve respect, acceptance, and inclusion in society. Paralyzed from polio at eighteen months, Judy's struggle for equality began early in life. From fighting to attend grade school after being described as a "fire hazard" to later winning a lawsuit against the New York City school system for denying her a teacher's license because of her paralysis, Judy's actions set a precedent that fundamentally improved rights for disabled people. As a young woman, Judy rolled her wheelchair through the doors of the US Department of Health, Education, and Welfare in San Francisco as a leader of the Section 504 Sit-In, the longest takeover of a governmental building in US history. Working with a community of over 150 disabled activists and allies, Judy successfully pressured the Carter administration to implement protections for disabled peoples' rights, sparking a national movement and leading to the creation of the Americans with Disabilities Act. Candid, intimate, and irreverent, Judy Heumann's memoir about resistance to exclusion invites readers to imagine and make real a world in which we all belong.

If you or someone you love is among the one in seven women stricken by PPD, you know how hard it is to get real help. This proven self-help program, which can be used alone or with a support group or therapist, will help you monitor each phase of illness, recognize when you need professional help, cope with daily life, and recover with new strength and confidence. Learn how to: Identify the symptoms of PPD and distinguish it from "baby blues" Deal with panic attacks, obsessive-compulsive urges, and stress overload Break the cycle of shame and negative thoughts Mobilize support from your husband or partner, family, and friends Seek and evaluate treatment options Cope with the disappointment and loss of self-esteem

This adorably illustrated book is written as notes from a child with Down syndrome. Directed to the new parents, "What I Want You To Know (Messages of Hope & Joy From Your Baby)" brings humor and insight to what can be a confusing, stressful time. Written and illustrated by the parent of a child with Down syndrome, the simple, comforting messages and accompanying black & white illustrations are heartwarming and delightful. This books makes an excellent gift or resource for new parents or those expecting a child with Down syndrome.

Attorney Anne Treimanis shares effective advocacy tips for families who have children with disabilities. She is unable to represent every student receiving special education services, so the best of what she knows is right here! These strategies are designed for families, advocates, and attorneys. Anne Treimanis has dedicated her entire career fighting for families and students, initially as a social worker and then for thirty years as an attorney.

A father’s exhilarating and funny love letter to his daughter with Down syndrome whose vibrant and infectious approach to life has something to teach all of us about how we can better live our own. 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.

Windows Into Heaven brings the stories of 30 different families that have been blessed by having someone with Down syndrome in their lives together to celebrate their amazing experiences. These stories give the reader positive insight into what someone with an extra chromosome can bring into their life, whether that reader be a new/expecting parent of a child with Down syndrome, someone seeking additional insight into Down syndrome all that Down syndrome is, or a person that is simply looking for uplifting and inspirational stories. Though children and adults with Down syndrome have intellectual disabilities, this books highlights the endless joys and possibilities they bring to the lives they touch.

Entertainers Roy and Dale Evans Rogers were thrilled when their little daughter Robin was born. But their excitement turned to concern when they were informed that Robin was born with Down's Syndrome and advised to "put her away." The Rogers ignored such talk and instead kept Robin, and she graced their home for two and a half years. Though Robin's time on earth was short, she changed her parents' lives and even made life better for other children born with special needs in the years to come. Angel Unaware is Robin's account of her life as she looks down from heaven. As she speaks to God about the mission of love she just completed on earth, the reader sees how she brought her parents closer to God and encouraged them to help other children in need. This book, which changed the way America treated children with special needs, is now available to a new generation. It is the perfect gift for parents of special needs children, parents grieving the death of a child, or anyone whose life has been touched by a special child.

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.

Up, Not Down Syndrome is a love letter and a map. Experience how it feels to think your life is over after having an unlovable baby. At first the loss seems impossible to overcome. Alex becomes the author's greatest teacher. Love is stronger than fear. Everyone has gifts. The book consists of three parts: the story, the lessons Alex taught the writer and Alex's perspective. Up, Not Down Syndrome is a promise to stay positive, no matter what: up, not down. Nancy's journey gets to the core of what it is to be human: Explore what it feels like to think life, as you know it, is over. Discover the fierce love, joy and peace a baby diagnosed with Trisomy 21 (Down syndrome) brings. Learn the lessons this child taught his mom. Understand the gift this baby brings to our world. Realize the depth of the love this family has for the child. "A beautiful, honest account of not just accepting--but embracing--the unknown. Nancy shows us the blessing of an unexpected gift and the enormity of love." --Sara Byala, Ph.D.

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. Chapters are short, a plus for busy parents, and can be read individually or sequentially. Throughout, many characters--the author's son, friends, and students--appear, serving as anecdotal evidence in support of the author's points and adding to the storytelling effect. As an added bonus, the book includes a Foreword by Martha Beck, parent of a child with Down syndrome and author of the New York Times bestseller, Expecting Adam. Turn to this upbeat book for credible, realistic advice and for a dose of bibliotherapy when you need validation and perspective.

Everyone knows that dipping your toe in the dating pond can be a little intimidating without first seeking some expert advice. And that's exactly what Terri Couwenhoven delivers in her new book written expressly for teens and adults with intellectual or developmental disabilities. Boyfriends & Girlfriends explains the do's and don'ts of dating and validates their normal, age-appropriate desire for companionship and romance. The book covers the biggest questions and smallest concerns of every would-be dater, including: - Who is an appropriate dating partner & who is not - How to read signals & judge whether the interest is mutual - How to ask someone out on a date - How to turn down a date - How to handle rejection - What sexual feelings are - How to work through problems in a relationship - What to do when a relationship is not working Written and illustrated for a hi/lo reader, Boyfriends & Girlfriends is perfect for anyone who is already in a relationship, ready to start one, or still only dreaming about it. The guide is also an informative read for parents, counselors, and other support providers.

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. 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 early months after giving birth; some reflect on years of experience with their child. The writers' diverse experiences point to a common truth: the life of a child with Down syndrome is something to celebrate. These women have a message to share--not just with other mothers but with genetic counselors, obstetricians, and the rest of us. In particular, Gifts, 10th Anniversary Edition, provides new parents with a source of up-to-date, positive, and realistic insight that is too often missing when they are facing a pre- or postnatal diagnosis of Down syndrome.

Hilarious and heartwarming stories that will empower you to make space for the other and discover the extraordinary, welcoming heart of God. Author and Instagram star Heather Avis has made it her mission to introduce the world to the unique gifts and real-life challenges of those who have been pushed to the edges of society. Mama to three adopted kids--two with Down Syndrome--Heather encourages us all to take a breath, whisper a prayer, laugh a little, and make room for the wildflowers. In a world of divisions and margins, those who act, look, and grow a little differently are all too often shoved aside. Scoot Over and Make Some Room is part inspiring narrative and part encouraging challenge for us all to listen and learn from those we're prone to ignore. Heather tells hilarious stories of her growing kids, spontaneous dance parties, forgotten pants, and navigating the challenges and joys of parenthood. She shares heartbreaking moments when her kids were denied a place at the table and when she had to fight for their voices to be heard. With beautiful wisdom and profound convictions, this manifesto will empower you to notice who's missing in the spaces you live in, to make room for your own kids and for those others who need you and your open heart. This is your invitation to a table where space is unlimited and every voice can be heard. Because when you open your life to the wild beauty of every unique individual, you'll discover your own colorful soul and the extraordinary, abundant heart of God.

A beautiful story highlighting a sunny day visit to the farm. The reader is invited into a whimsical tale with animals and children enjoying their adventures. What makes this story unique, however, is that each of the children photographed in the book has Down Syndrome. The storyline is appropriate for all children and clearly shows the abilities of children with an extra chromosome.