DSI's Recommended Reading List for Self Advocacy

February is Self Advocate's month at Down syndrome Indiana! To celebrate, below is a list of book titles about adults with Down syndrome. Each title listed is available in the lending library. If you are interested in borrowing any of the books below, please contact Down Syndrome Indiana at info@dsindiana.org or call us at 317-925-7617.

Adults with Down syndrome

By Siegfried M. Pueschel

People with Down syndrome are living longer, fuller lives than ever before – and now for the first time ever, there’s a comprehensive, reader-friendly book on the social, clinical, legal and personal issues they’ll navigate in adulthood. Internationally recognized authority Siegfried Pueschel blends contributions from respected experts with first-person essays by adults with Down syndrome themselves. Together, they answer reader’s critical questions about what adults experience and how to support their goals, dreams, choices, and overall well-being. Readers will get research supported information and practical advice on:

  • Addressing medical and mental health issues;
  • Fostering social relationships;
  • Using person-centered supports to help young adults succeed in college;
  • Helping people with Down syndrome develop self esteem and a healthy sexuality;
  • Promoting community employment through methods, such as, vocational education, transition planning and supported employment;
  • Ensuring that adults have choices and control over their living arrangements;
  • Considering alternatives to guardianship as individuals reach adulthood;
  • Encouraging healthy living through participation in recreational events.

This book is ideal for families of individuals with Down syndrome and professionals as well.

Adventures in the Mainstream

By Greg Palmer

Like many parents, Greg Palmer worries about his son's future. But his son Ned's last year of high school raises concerns and anxieties for him that most parents don't experience. Ned has Down syndrome; when high school ends for him, school is out forever. The questions loom: What's next? How will Ned negotiate the world without the structure of school? Will he find a rewarding job in something other than food service? To help him sort out these questions and document his son's transition from high school to work, Palmer, an award-winning writer and producer of PBS documentaries, keeps a journal that's the basis of this thoughtful and entertaining book.

This book is a lively and insightful account allowing readers to enjoy Ned's strengths and foibles just as his father does. This personal chronicle also gives us a better understanding of what's involved-for parent and child-in a young man's journey from adolescence toward adulthood and greater independence.

Down syndrome

By William I. Cohen, Lynn Nadel and Myra Madnick

Providing a comprehensive survey of the clinical, educational, developmental, psychosocial, and transitional issues relevant to people with Down syndrome, this book addresses the needs of family members, caregivers, and professionals alike. Edited in association with the National Down Syndrome Society, this up-to-date treatment incorporates the newest developments concerning sexuality, inclusion, transition into adulthood, and legislation, as well as a discussion of the Human Genome Project and the sequencing of chromosome 21. This book comprises ten chapter covering: 

  • Self Determination
  • Self Advocacy
  • Advocacy
  • Role of the Family
  • Health and Clinical Care
  • Research
  • Psychosocial Issues
  • Education/Inclusion
  • Communication, Math and Language skills
  • Turning vision into reality 

Parents, family members, individuals with Down syndrome, advocates, educators and physicians will all benefit from this book.

Mental Wellness in Adults with Down syndrome

By Dennis McGuire, PhD and Brian Chicoine, MD

In this groundbreaking book, the founding directors of the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge, Illinois--the first and premier facility of its type in North America--share nearly 30 years of combined experience treating more than 3,000 adolescents and adults with Down syndrome aged 12 to 83. Mental Wellness 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.

This authoritative, 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. As McGuire and Chicoine describe these traits and mental health issues, they also explain, through detailed observations and case studies based on their patients, how parents, caregivers and adults with Down syndrome can work together to foster mental wellness. In addition, the authors discuss the importance of regular assessment and how behavior and mental well-being can be affected by environmental conditions, social opportunities, and physical health.

The first section of the book offers a wealth of knowledge and insight about typical behavioral traits of Down syndrome and how to work with them to encourage mental wellness on a day-to-day basis. Topics include:

  • Community and Family Support
  • Self-Talk and Imaginary Friends
  • Communication-Related Problems
  • Memory Strengths and Deficits
  • Emotional Development
  • Tendencies Toward Sameness and Repetition
  • Self-Esteem and Self-Image
  • Lifespan Issues

The second section on mental illness includes chapters on such conditions as:

  • Depression and Other Mood Disorders
  • Anxiety
  • Obsessive-compulsive disorder
  • Tic Disorders and Repetitive Movements
  • AD/HD and Other Impulse Control Issues
  • Autism
  • Alzheimer disease

In each case, the authors describe the problem signs, the diagnostic process and a range of treatment options, such as counseling, behavioral therapy and medications.

Now, thanks to Mental Wellness, readers all over the world can pay a virtual visit to the Adult Down Syndrome Center and benefit from the insight and expertise of Drs. McGuire and Chicoine. Anyone who knows or cares for an adult with Down syndrome will undoubtedly understand them better after reading this guide.

Teaching Children with Down syndrome about their Bodies, Boundaries, and Sexuality

By Terri Couwenhoven, M.S.

Parents of children with Down syndrome and other intellectual disabilities are accustomed to paying close attention to their child's physical, cognitive, and emotional development. This proactive approach should also include their child's sexual development, which for many parents may not seem as obvious or urgent, especially to those with young children.

Drawing on her unique background as both a sexual educator and mother of a child with Down syndrome, the author blends factual information and practical ideas for teaching children with Down syndrome about their bodies, puberty, and sexuality. This book gives parents the confidence to speak comfortably about these sometimes difficult subjects.

In an easy-to-read, non-clinical style, the book covers relevant issues and concerns for children of all ages, such as:

  • Labeling & explaining private body parts
  • Identifying & expressing emotions
  • Respecting personal space
  • Teaching self-care & hygiene
  • Understanding norms of privacy
  • Understanding gender identity
  • Showing appropriate levels of affection

It also covers later issues that affect teenagers and young adults, including:

  • Anticipating and understanding puberty
  • Dealing with periods, bras for girls
  • Experiencing erections, wet dreams for boys
  • Relating to the opposite sex
  • Sharing parental values about sexuality
  • Explaining sexual relationships
  • Preventing sexual abuse
  • Understanding how Down syndrome affects puberty & fertility rates

Each chapter highlights important points with key messages, teaching activities, parental pauses, and anecdotes, all of which prompt readers to stop and consider concepts or values associated with a particular topic. The final chapter covers the special concerns of parents who are now teaching teenaged or adult children about sexuality for the first time. It concludes with extensive appendices containing invaluable teaching materials and illustrations of body parts and functions.

The Down syndrome Transition Handbook

By Jo Ann Simons, MSW

The Down Syndrome Transition Handbook helps parents prepare their child for independent adult life. It's full of practical tips and step-by-step instructions to help families envision their child's future, develop a transition plan, and implement it. There's also a wealth of information about adults in their twenties or thirties living at home who are still struggling with finding a job, locating housing, or establishing a meaningful life in their community, and who could achieve more independence with the right guidance and supports.

The book is the culmination of the author's professional and personal experiences guiding hundreds of families through the transition process, and parenting her own son with Down syndrome, now an adult living independently. Its conversational style reassures parents overwhelmed by a complex process and its frank advice offers a reality check for parents whose child will soon venture into the adult world, or whose adult child has yet to leave the nest.

The Down Syndrome Transition Handbook outlines the steps of transitioning, with an emphasis on the necessity of the child playing an active role in the process. It considers everything families need to know--from meeting broad, basic needs such as finding meaningful ways to fill one's days (work, volunteering, leisure activities, training & education, exercise) and how to get around (driving vs. using public transportation) to addressing specific needs such as whether to leave high school at age 21 or earlier and how to maintain eligibility for benefits by keeping income and assets within allowable limits. Chapters address:

  • High School
  • Postsecondary Options
  • Testing
  • Residential Options
  • Work & other Endeavors
  • Transportation
  • Health
  • Family & Friends
  • Legal Issues
  • Financial Issues
  • Technology

Families will want this one-stop resource to demystify the transition process for teens and young adults and to help older adults still at home become more independent.

Think College!

 By Meg Grigal & Debra Hart

As more and more students with intellectual disabilities “think college,” high schools and postsecondary schools must be fully prepared to meet their needs. Developed by two highly respected experts, this book uncovers the big picture of postsecondary education (PSE) options and reveals how to support students with disabilities before, during, and after a successful transition to college.

A critical resource for education professionals to read and share with families, Think College! helps readers to:

• Understand the philosophical and practical purposes and potential outcomes of supporting students with intellectual disabilities to access PSE;

• Explore the three current models for PSE: the inclusive individual support approach, the mixed hybrid approach, and substantially separate options;

• Overcome the common challenges to PSE for students with intellectual disabilities;

• Plan effective, person-centered transition services for high-school students;

• Support students as they manage the practical aspects of a positive PSE experience;

• Connect students’ PSE experiences directly to employment and other life goals.

With this thorough guide to today’s PSE options and tomorrow’s possibilities, professionals will help students with intellectual disabilities take full advantage of their educational opportunities – and set the stage for successful, fulfilling community lives.