Resources, Networks, and Recommendations

***Note:  This page will be a work in progress and under construction for quite sometime as the intention is to provide a comprehensive list of hyperlinked resources, networks, and recommendations and/or references that are helpful, useful, and otherwise beneficial to parents of children with Down Syndrome (and, in some capacity, parents of children with any kind of cognitive, social, and/or physical limitation).*** Living Up From Downs 10.23.17


A Parent’s Guide to Down Syndrome – Siegfried M. Pueschel – Brookes Publishing  For over 10 years, parents and professionals have trusted Dr. Pueschel’s bestselling book A Parent’s Guide to Down Syndrome—and now, they can get the latest information in his newly updated edition translated into Spanish. Crossing the lifespan, this thorough volume highlights developmental stages and shows recent advances that can improve a child’s quality of life. New topics covered include

  • Individuals with Disabilities Education Act (IDEA) 1997
  • innovative services, programs, and support groups
  • the latest prenatal genetic testing methods
  • the impact of play on gross motor development
  • association of Down syndrome with other disorders such as Attention-Deficit/Hyperactivity Disorder and Pervasive Developmental Disorder

Written by leading experts, many of whom are parents of children with Down syndrome themselves, readers will get the advice and insight in this easy-to-read reference.

Steps to Independence – Bruce L. Baker Ph.D., Alan J. Brightman Ph.D. – Brookes Publishing  Parents are their children’s first and most influential teachers. That’s an important job—and this popular, highly respected guidebook makes it much easier. A trusted resource for thousands of families, this lively book gives parents of children from age 3 through young adulthood proven strategies for teaching children the life skills they’ll need to live as independently as possible. Parents will start with a reader-friendly overview of the basics of teaching and then go deeper with a step-by-step guide to teaching seven different types of skills: get-ready, self-help, toilet training, play, self-care, home-care, and information gathering skills. In this fourth edition, they’ll also find helpful updates and additions, such as

  • an expanded section on managing behavior problems, including guidance on identifying the problems, examining behavior, initiating a behavior management program, and encouraging alternative behaviors
  • a chapter on technology that reflects recent advances and shows how to benefit from using email, instant messaging, Internet communities, search engines, and software
  • a chapter on strengthening partnerships with other teachers in the child’s life during IEP meetings, through classroom volunteer work, and in everyday communication with them

Based on years of work with parents and laced with humor, helpful illustrations, and vignettes, this is a must-have resource for families and all professionals who work with them.

You, Your Child, and “Special” Education – Barbara Coyne Cutler – Brookes Publishing  Overwhelmed and intimidated: That’s how many parents feel when they’re dealing with the complex special education system. How can they transform themselves into confident, knowledgeable advocates and get their children the free appropriate public education they’re entitled to? Give them the answers with this empowering survival guide, the book with the straight talk parents want and the encouragement they need as they work to get the best services for their child.

A comprehensive update of a resource parents have relied on for more than 17 years, this no-nonsense guide cuts right through the myths and obstacles that block the way to better education for a child with special needs. Veteran advocacy expert Barbara Cutler directly addresses parents with empathy and candor, drawing on 30 years of professional expertise and her deep personal insight as the mother of a son with autism. Share this book with parents and they’ll have the step-by-step, real-world guidance they need to

  • proactively participate in IEP meetings to secure more and better services for their child
  • develop productive assertiveness that gets real results
  • arrange, prepare for, and conduct a classroom observation
  • recognize and defeat the popular arguments against inclusion
  • communicate and negotiate effectively with school personnel
  • learn how to say no and fight for the child’s rights if an IEP is not acceptable
  • make the most of support from personal advocates and parent and citizen organizations
  • fully understand their legal rights and the elements of a free appropriate public education and least restrictive environment
  • monitor IEP implementation and intervene if the school doesn’t deliver agreed-upon services

Going far beyond abstract advice, Cutler makes successful advocacy come to life through sample letters and dialogues, realistic vignettes, practical materials like a detailed classroom observation checklist, and solutions to large and small problems that might arise.

One of the most important books a parent will ever have, this is an essential resource for every professional to share with the families they serve. Parents will discover how to become strong, independent, and effective advocates—and their children will get an inclusive and appropriate education that helps them reach their full potential.


Websites – National Organizations

National Down Syndrome Society  The National Down Syndrome Society (NDSS) is the leading human rights organization for all individuals with Down Syndrome.

National Down Syndrome Congress  The National Down Syndrome Congress (NDSC) is the leading national resource of support and information for anyone touched by or seeking to learn about Down syndrome, from the moment of a prenatal diagnosis through adulthood.

National Association for Down Syndrome  The National Association for Down Syndrome (NADS) is the oldest organization in the country serving individuals with Down Syndrome and their families. Founded in Chicago in 1961 by parents, NADS supports all persons with Down syndrome in achieving their full potential.


Websites – State Organizations


Down Syndrome Guild of Greater Kansas City The Down Syndrome Guild of Greater Kansas City is a non-profit 501(c)(3) organization whose mission is to provide support and resources for individuals with Down syndrome, their families and the professionals who serve them. DSG seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.

Down Syndrome Group of the Ozarks The only Down syndrome specific group providing education, advocacy and awareness in the Ozarks.

Down Syndrome Association of Greater Saint Louis  The mission of the Down Syndrome Association of Greater St. Louis is to benefit the lives of people with Down syndrome and their families through individual and family support, education, public awareness and advocacy.


Websites – International Organizations

Down Syndrome International  Down Syndrome International (DSi) is a UK based international charity, comprising a membership of individuals and organizations from all over the world, committed to improving quality of life for people with Down Syndrome worldwide and promoting their inherent right to be accepted and included as valued and equal members of their communities.


Social Media – Networks and Groups

National Down Syndrome Society – NDSS – Can be found on the following social media sites.





National Down Syndrome Congress – NDSC – Can be found on the following social media sites.




National Association for Down Syndrome – NADS – Can be found on the following social media sites.



Recommendations and References

Discovery Toys  Discovery Toys is committed to bringing fun, safe and developmentally appropriate toys and products to children and adults of all abilities and special needs. Children with developmental disabilities, like all children, develop at a unique rate and pattern of development. Our products have useful applications for children and adults with developmental disabilities.





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