PARENTING

Beck, M. Expecting Adam. With uncommon sense and dependable wit, Martha Beck unravels every assumption on the meaning of life, choice, love-- and the wisdom of pursuing happiness through any of the unusual routes.

Brill, Marlene Targ, M.Ed. Barron's Parenting Keys. (1993). Keys To Parenting A Child with Down Syndrome. Barron's Educational Series, Inc., 250 Wireless Blvd., Hauppauge, NY 11788. Written by an educator who is knowledgeable with working with families, educators and schools on the subject of Down syndrome. 


Cunningham, Cliff. (2nd printing-1997). Understanding Down Syndrome: An Introduction for Parents. Brookline Books, P.O. Box 1046, Cambridge, MA 02238. (800) 666-2665. An excellent overview for new parents and professionals of children with Down syndrome.

Dmitriev, Valentine Ph.D. (4th ed. April 1994) Time To Begin: Early Education for Children with Down Syndrome. Penn Cove Press, 3748 S. Oceanside Drive, Greenbank, WA 98253- 9745. For tel. orders: (360)678-3209. A practical manual for guiding the development of children with Down syndrome from infancy to two years. Step-by-step, illustrated exercises are provided with respect to development problems particular to these children. 

Hanson, M.J. Teaching the Infant with Down Syndrome: A Guide for Parents and Professionals. The latest information on teaching activities for infants, resources for parents, medical facts about Down syndrome and tips for parents on how to best help and enjoy their babies.
 


Klein, S. D. & Schive, K. (2001). You Will Dream New Dreams. London: Kensignton Publications. This book is a compassionate, deeply felt collection of writings exploring the common ground of emotions shared by perents of children with disabilities. Real-life fathers and mothers of kids with cerebral palsy, Down Syndrome, autism, mental retardation and other life-changing conditions speak from the heart on how they mourned for the child of their dreams, learned the importance of turning to friends instead of being "strong" all the time, experienced the wrenching disappointment of letting go of certain expectations for their child and found the unexpected joy of discovering new dreams.
 

Marsh, Jayne D.B. & Carol Boggins, (Eds.). (1995). From the Heart: On Being the Mother of a Child with Special Needs. Woodbine House, 1650 Bells Mill Road, Bethesda, MD 20817. (800)843-7323. Nine mothers explore their experiences, arranged around common family, community, and personal themes.
 

Meyer, Donald J. (Ed.). (1995). Uncommon Fathers: Reflections on Raising a Child with a Disability. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800)843-7323. Written for fathers, by fathers of diverse backgrounds.
 

Pueschel, Siegfried M. (Ed.). (2001). A Parent's Guide to Down Syndrome: Toward a Brighter Future. Brookes Publishing Co., Box 10624, Baltimore, MD 21285. (800)638-3775   A comprehensive reference book especially for new parents, but useful and informative to "seasoned" parents as well. Range of topics include: history of Down syndrome; physical characteristics; developmental expectations; early intervention; feed the young child; the school years; recreation; adolescence and adulthood; vocational training and employment.
 


Pueschel, Siegfried M. and Maria Sustrova, Eds. (1997), Adolescents with Down Syndrome: Toward a More Fulfilling Life. Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, MD 21285-0624. (800) 638-3775. Expert insight and information on biomedical psychological, social, sexual, behavioral, educational, vocational, and legal concerns.
 

Schwartz, Sue, Ph.D., Joan E. Heller Miller, Ed.M. (1996). The New Language of Toys: Teaching Communication Skills to Special-Needs Children: A Guide for Parents and Teachers. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800)843-7323  Helpful ideas to stimulate special-needs children to develop and improve their language skills through exercises in toys and play.
 

Stray-Gundersen, Karen. (Ed.). (1995). Babies with Down Syndrome: A New Parent's Guide. 2nd Edition. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800)843-7323.  A comprehensive guide for new parents others concerning how to help a child with Down syndrome reach his/her potential.
 

FAMILY SUPPORT

Bruni, Maryanne, Bsc, OT(C). 1998. Fine Motor Skills in Children with Down Syndrome. A Guide for Parents and Professionals. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800)843-7323.  This is a practical and accessible guide to understanding and developing fine motor skills in children with Down syndrome.

Edwards, Jean P., DSW and Thomas E. Elkins,M.D. (1988). Just Between Us: A Social Sexual Training Guide for Parents and Professionals Who Have Concerns for Persons with Developmental Disabilities. Ednick Communications, P.O. Box 3612, Portland, OR 97208. 


Hassold, Terry J., Ph.D. & David Patterson, Ph.D. (Eds.) 1999. Down Syndrome: A Promising Future, Together. Wiley-Liss, Inc. 605 Third Ave., New York, NY 10158-0012. Divided into ten sections: everything you need to know, covers all issues of Down syndrome. For parents and professionals alike.
 

Miller, Nancy B., Ph.D., M.S.W. (1994). Nobody's Perfect: Living & Growing with Children Who Have Special Needs. Paul H. Brookes Publishing, P.O. Box 10624, Baltimore, MD 21285. (800) 638-3775. Although this book does not mention Down syndrome, it has been written for any parent who has any type of special need in their family. Dr. Miller breaks down the adaptation process into four stages; surviving, searching, settling in, and separating. It gives much insight into the parental concerns of raising a child with special needs.
 

Nadel, Lynn & Donna Rosenthal. (1995). Down Syndrome: Living and Learning in the Community. Wiley-Liss, Inc., 1 Wiley Drive, Somerset, NJ 08875. 1-800-879-4539.  Written for parents and professionals.
 

Powell, Thomas H. and Ogle, Peggy Ahrenhold. (2nd Ed. 1992). Brothers and Sisters: A Special Part of Exceptional Families. Brookes Publishing Co., Box 10624, Baltimore, MD 21285. (800)638-3775. A well-written book that helps document and portray the particular needs of the children from "exceptional families."
 

Rosenfeld, Lynn Robinson, L.C.S.W., Ph.D., (1994). Your Child and Health Care: A "Dollars & Sense" Guide For Families with Special Needs. Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, MD 21285-0624 (800)638-3775. A detailed resource guide to help families find high-quality, affordable medical care, select health insurance plans, and locate financial assistance programs, organizations, and government services.
 

Rynders, John E. & J.M. Horrobin.(1995). Down Syndrome: Birth to Adulthood: Giving Families an Edge.  Love Publishing Company, 1777 So. Bellaire St., Denver. CO 80222. (303) 757-2579. Case studies of families woven in a clear, readable fashion, followed by practical suggestions to help both parents and professionals alike.
 

Singer, George H.S., and Laurie E. Powers (1993). Families, Disability, and Empowerment: Active Coping Skills and Strategies for Family Interventions. Paul H. Brookes Publishing Co., P.O. Box 10624, Baltimore, MD 21285-0624. (800)638-3775. A comprehensive resource which gathers experts from social work, health care, early intervention, parent-to-parent programs, counseling and education to present strategies for building strong partnerships between service providers and the families of individuals with disabilities. Will equip professionals to empower families, as well as enable families to empower themselves.
 

Trainer, Marilyn. (1991). Differences in Common: Straight Talk on Mental Retardation, Down Syndrome and Life. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800)843-7323. A rich collection of essays by a mother of a child with Down syndrome, who is now an adult. Contains insightful anecdotes and personal reflections on the feelings and experiences connected with parenting a child with Down syndrome.
 

Turnbull, Ann P., et al. (1993). Cognitive Coping, Families & Disabilities. Paul H. Brookes Publishing, P.O.Box 10624, Baltimore, MD 21285-9945. (800)638-3775.  Attempts to look into the future, by the dissemination of existing problems, and methods that can be used to obtain successful coping strategies as told through the stories of different families.
 

Winders, Patricia C., P.T. 1997. Gross Motor Skills in Children with Down syndrome: A Guide for Parents and Professionals. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800)843-7323. This book provides parents and professionals with essential information about motor development associated with Down syndrome.
 

EDUCATION

Beckman, Paula J. and Gayle Beckman Boyes. (1993). Deciphering the System: A Guide for Families of Young Children with Disabilities. Brookline Books, P.O. Box 1046, Cambridge, MA 02238. (800)666-2665. Provides basic information about parents' rights under recent legislation and many other aspects of the service system. Hundreds of good ideas and stepby-step suggestions for handling educational planning meetings.

Kumin, Libby, Ph.D., CCC-SLP. (1994). Communication Skills in Children with Down Syndrome: A Guide For Parents. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800)843-7323. Written especially to help parents teaching their children communication skills at home and to facilitate working effectively with speech pathologists. It is not only for the very young with Down syndrome, but older children/adults as well. 


Miller, Jon F. Mark Leddy & Lewis A. Leavitt. (1999). Improving the Communication of People with Down Syndrome. Paul H. Brookes Publishing Co. P.O. Box 10624, Baltimore, MD 21285- 0624. 800/638-3775. 
 Provides a framework for assessing and treating speech, language, and communication problems in children and adults with Down syndrome.

Oelwein, Patricia, M.Ed. (1995). Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers. Woodbine House, 6510 Bells Mill Road, Rockville, MD 20817. (301)897-3570. This step-by-step guide to reading allows parents to work with their child at home and helps them coordinate reading lessons with teachers. 


MEDICAL ISSUES

Lott, Ira T. & Ernest E. McCoy. (Eds.). (3rd printing 1993). Down Syndrome: Advances in Medical Care. Wiley-Liss, Inc. 605 Third Ave., New York, NY 10158-0012.

Marino, Bruno, M.D., & S.M. Pueschel, M.D.,Ph.D.,M.P.H. (Eds.) (1996). Heart Disease in Persons with Down Syndrome. Paul H. Brookes Publ. Co., P.O. Box 10624, Baltimore, MD 21285. (800)638-3775. 


**Medlen, J. E. (2002). The Down Syndrome Nutrition Handbook. Bethesda, MD: Woodbine
 House.

Pueschel, Siegfried M. & Jeanette K. Pueschel. 1992. Biomedical Concerns in Persons with Down Syndrome. Paul H. Brookes Publ. Co., P.O. Box 10624, Baltimore, MD 21285. (800)638-3775. 


VanDyke, D.C., M.D., Philip Mattheis, M.D., Susan Eberly, M.A., and Janet Williams, R.N.,Ph.D. (Eds.). (1995). Medical & Surgical Care for Children with Down Syndrome. Woodbine House, 6510 Bells Mill Rd., Bethesda MD 20817. (800)843-7323. Provides detailed, easy-to understand information on a wide range of medical conditions.
 

JOURNALS/NEWSLETTERS

Down Syndrome News. Published ten times annually by the NDSC with annual Ind/Fam membership fee of $25. For parents and professionals concerned with Down syndrome. Includes articles on medical, educational, recreational, residential, and legislative matters and other current topics about Down syndrome. Also includes D.S. Headline News printed quarterly within the ten issues.

Down's Syndrome: Research and Practice. Editor: Professor Sue Buckley, University of Portsmouth, U.K. 1994. Published Feb/June/Oct. The Sarah Duffen Centre, Belmont Street, Southsea, Hants, PO5, 1NA U.K. FAX 0705 824265. Internat'l Tel: 44 705 824261. Articles address important issues across a broad range including, psychology, speech and language therapy, education, medicine. 


Exceptional Parent. $28/yr (8 issues). Box 3000, Dept. EP, Denville, NJ 07834. (800)247- 8080. A publication dealing with many issues affecting exceptional children and their families.
 

National Down Syndrome Society Update. (Quarterly) National Down Syndrome Society, 666 Broadway, Suite 800, New York, NY 10012. (800)221-4602. A source for recent medical and scientific research, and social and educational programs.
 

Down Syndrome Quarterly. $24/yr (4 issues) Denison University, Granville, OH 43023. Includes articles describing current medical, behavioral, and social scientific research. Tel. 740-587-6503 (Political Science)
 

BOOKS FOR CHILDREN/ADOLESCENTS

Berkus, Clara Widess. (1992). Charlsie's Chuckle. Woodbine House, 6510 Bells Mill Rd., Bethesda, MD 20817. (800)843-7323. Rather than being the focus of 7-year old Charlsie's character, Down syndrome plays a minor role in his identity, which is better defined by his innate happiness and his uncanny ability to make a real difference in the world around him.

Booth, Zilpha. Illustrated by Pam DeVito. 1996. Finding a Friend.  Ellsworth American Printing Services, Ellsworth, Maine. 04605. Young readers will learn a lot from this gentle story about two eight-year old boys, who find that a friend is a friend in spite of any physical or mental defect. (One character has Down syndrome.) Windswept House Publishers, Mount Desert, Maine 04660. (207) 244-5027 


Klein, Lee. (1994). Are There Stripes in Heaven? Paulist Press, 997 MacArthur Blvd. Mahwah, NJ 07430. Illustrates with warmth and humor the interaction between Patrick, who is having a bad day, and his older sister, Colleen, who happens to have Down syndrome. She helps him see and appreciate even the most ordinary of moments.
 

Rabe, Berniece. (1988). Where's Chimpy? Albert Whitman & Co., 6340 Oakton, Morton Grove, IL 60053. (847) 581-0033. Text and photographs show Misty, a little girl with Down syndrome, and her father reviewing her day's activities in their search for her stuffed monkey.
 

Testa, Maria. (1994). Thumbs Up Rico! Albert Whitman & Co., 6340 Oakton St., Morton Grove, IL 60053. (708) 581-0033. "Rico" who has Down syndrome, creates a likable selfportrait in three brief chapters. An upbeat story.
 

BOOKS FOR ADOLESCENTS/ADULTS

Burke, Chris and Jo Beth McDaniel. (1991). A Special Kind of Hero. Bantam Doubleday Dell Publishing Group, Inc. 666 Fifth Ave., New York, NY 10103. The star of the T.V. show, "Life Goes On" tells his remarkable story.

Kingsley, Jason and Mitchell Levitz. (1994). Count Us In: Growing Up with Down Syndrome. Harcourt Brace, 465 S. Lincoln Drive, Troy, MO 63379. (800)543-1918. A unique and powerful conversational-style account by two young men with Down syndrome. 


Lubchenco, Lula O. with Allen C. Crocker, Eds. 1997. Bus Girl: Poems by Gretchen Josephson. Brookline Books, P.O. Box 1047, Cambridge, MA 02238. Written over the course of several decades. A thought-provoking, often humorous, collection of poems from a woman born with Down syndrome.
 

Shaw, Lou. (1994). Honor Thy Son. Abingdon Press, 201 Eighth Ave. So., Nashville, TN 37203. Murder-mystery involving a 19 year old boy, JJ, and his father who had deserted his family when JJ was born. When JJ becomes implicated in the murder of his employer, his father becomes involved in his son's life for the first time. A fast-paced thriller involving father and son pursuing a dream, while trying to escape the terror and intrigue surrounding them.
 

SIBLING SUPPORT

Kaleidoscope. $8.50/yr. Sibling Information Network, Connecticut's UAP, 62 Washington Street, Middletown, CT 06457-2844. (203)344-7500. Newsletter that focuses on issues pertaining to families of children with disabilities. Also publishes: Sibling Information Network. Published four times a year. $8.50/yr. Newsletter provides information for and about siblings of persons with handicaps.

Stuve-Bodeen, Stephanie. 1998 We'll Paint the Octopus Red. Woodbine House, 6510 Bells Mill Road, Bethesda, MD 20817. (800) 943-7323. A story told with great warmth and directness puts young siblings' mind at ease and helps them develop a positive outlook for their brother/sister with Down syndrome. Emma, a young child on the verge of becoming a big sister learns that her brother, Isaac, has Down syndrome. 


Several entries in this bibliography are re-printed with permission from the National Down Syndrome Congress web-site. This is not meant to be an entire list of recommended books. They have not all been reviewed by the DSAF. Be sure you read books that have a recent copyright date as issues for individuals with Down syndrome and their families are change dramatically over time.
 


The following books have been purchased for the Lincoln Public Libraries by the Down Syndrome Association for Families. They are available for check-out at Lincoln Public Library Branches.

Children's Books
  • Russ and the AppleTree Surprise (1999)- Rickert
  • Views from our Shoes (1997) - ed. Meyer
Adult's Books
  • Fine Motor Skills in Children with Down Syndrome (1998) - Bruni
  • Teaching Reading to Children with Down Syndrome (1995) - Oelwein
  • Gross Motor Skills in Children with Down Syndrome (1997) - Winders
  • Down Syndrome: Birth to Adulthood - Giving Families an Edge (1995) - Rynders & Horrobin
  • Negotiating the Special Education Maze: for Parents and Teachers (1998) - Anderson, Chitwood, Hayden
  • The Down Syndrome Nutrition Handbook (2002) - Guthrie
  • Babies with Down Syndrome: A New Parents Guide (1995) - ed. Stray-Gunderso


Down Syndrome Association for Families of Nebraska

 a 501(c) non-profit organization. Nebraska , 

P.O. Box 57362, 

Lincoln, NE 68505

Phone: (402) 421-1338  

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