DSRF - Resources for New Parents

Available on our web site is a section, Information for New Parents, which includes a list of Frequently Asked Questions (FAQ) and basic medical facts.

The Down's Syndrome Association in the UK has produced the brochure "Down's Syndrome - a new parents guide". The booklet provides information for new parents and answers the most common questions that parents ask regarding their infants.

The Down's Syndrome Association has also produced a booklet available online. People with Down's syndrome - your questions answered / Susannah Seyman. Down's Syndrome Association. -- London, UK: Down's Syndrome Association, 2007.

The Canadian Down Syndrome Society has an information section on their web site of useful informaton for new parents.

Down's Syndrome Scotland has produced a booklet Ages and Stages of Down's Syndrome that outlines the health and developmental milestones of those with Down syndrome throughout their lives.

Riverbend Down Syndrome Parent Support Group is an excellent resource of information for families. Topics of interest for new parents include early intervention and developmental milestones.

Down syndrome - from Wikipedia

Parental Support - Groups, Online Blogs, Listservs

Canadian parent support groups - to find if there is a parent group in your area of the country please consult the Support Group page of the Canadian Down Syndrome Society website.

An online group, specific to British Columbia, is the BC Down Syndrome Connection. Its aim is to connect parents or caregivers within the province of BC to discuss funding issues, respite benefits and additional services. To join the group email either Rosalie Newell-Wagner (rosaliewagner@telus.net) or Katrina Bosch (cokabo@shaw.ca).

The Canadian Down Syndrome Society (CDSS) website offers the CDSS Online Community page. This page provides parents the opportunity to share information, to seek advice, to celebrate and to "chat" about Down syndrome through on their Forum and their Blog.

Other groups and blogs of interest include: Down Syndrome Canadian Parents, Blog for Down Syndrome, Blogs about: Down Syndrome, Down Syndrome Blogs, Chewing the Fat (topic : disabilities - by Dave Hingsburger)

Down Syndrome : Health Issues, a website designed and maintained by Dr. Len Leshin, has an extensive list of US and international organizations and parent support groups. Also listed are numerous online groups, blogs, clubs and forums. Click HERE to review the resource list.

The longest running newsgroup on the web for the Down syndrome community is DOWN-SYNatLISTSERV.NODAK.EDU. Instructions on how to join this newsgroup can be found on their website.

Resources - Books & DVD
Babies with Down syndrome : a new parents guide / edited by Susan J. Skallerup -- Bethesda, MD : Woodbine House, 2008.
      The trustworthy guide which has benefited thousands of families since it was first published in 1985, is completely revised and updated in a new, third edition. Covering the best practices for raising and caring for children with Down syndrome through age five, this book is invaluable to new parents who have welcomed a baby with Down syndrome into their lives.
Down Syndrome: The First 18 Months [dvd] / written, produced and directed by Will Schermerhorn -- Vienna, VA: Blueberry Shoes Productions, 2003.
      After his own child was born with Down syndrome and he observed the difficulty his wife had in finding information on the condition, director Will Schermerhorn was inspired to create this program. Interspersed with adorable footage of Down syndrome children, parents and experts proved helpful information regarding heath concerns, therapies, and the pressure of raising a Down syndrome child. Inspiring and easy-to-understand, The First 18 Months is essential viewing for parents of Down syndrome newborns.
Gifts : mothers reflect on how children with Down syndrome enrich their lives / edited by Kathryn Lynard Soper – Bethesda, MD : Woodbine House, 2007
      Many mothers with a child with Down syndrome who travel this path discover rich, unexpected rewards along the way. 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.
Different dads : fathers’ stories of parenting disabled children / edited by Jill Harrions, Matthew Henderson and Rob Leonard – London , UK : Jessica Kingsley, 2007
      The book draws together stories of fathers' experiences in bringing up a child with a disability. One of the ways parents manage to cope is to know that others have been through the same experiences. The book is not only about coping but also about the positive experiences that many fathers have to tell.
More than a mom : living a full and balanced life when your child has special needs / by Amy Baskin and Heather Fawcett -- Baltimore, MD : Woodbine House, 2006.
      Solid, practical advice on how to cope with the many personal challenges mothers of children with disabilities face at home, at work, and within themselves. A “how to” guide for living a balanced, fulfilling life with advice from moms who have been there. This includes the authors experiences and insights, and tips from more than 500 other moms of kids with special needs throughout North America.
Adventures in the mainstream : coming of age with Down syndrome / by Greg Palmer -- Bethesda, MD: Woodbine House, 2005.
      The author worries about his son Ned's future when he reaches his last year of high school. What's next? Palmer confronts his hopes and fears while coaxing his son into adulthood and to greater independence. He writes about preparing Ned for the working world -- when it works and when it doesn't. His insights are helpful to other families who are facing similar issues or who will be soon.
The memory keeper's daughter / Kim Edwards -- New York, NY: Viking, 2005. [FICTION].
      Making a decision is always emotionally difficult, but when the decision means giving up a child, it becomes life altering. David Henry, as a doctor, oversees the births of his twin children, a boy and a girl. While the boy is completely healthy, the girl is born with Down syndrome. At this time in the 1960's, keeping a child at home with such a condition was rare. Edwards' novel deals with the trauma, secrecy, and the consequences of David Henry's impulsive decision to give away his daughter. Her memory haunts him, his family, and the reader.