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New Parent Information on Down Syndrome


Information about Down syndrome for expectant or new parents should soon be the most reliable and up to date resources available. Individuals and advocacy or support organizations often take responsibility for making information packets available for local hospitals, doctors and counselors for parents of newborns diagnosed with Down syndrome.

Usually included in the envelope or gift bag are publications from the National Down Syndrome Congress, The National Down Syndrome Society, and brochures from local or regional parent support and advocacy groups. Often, a congratulatory greeting card, a book or booklist about raising babies with Down syndrome, bookmarks with resource information, and invitations to events and meetings are included. The wonderful essay, Welcome to Holland, by Emily Perl Kingsley, is helpful not only to parents but extended family and friends.

For those who have had a prenatal diagnosis of Down syndrome and are seeking support as they move forward with their pregnancy, an outstanding new eBook is available at no cost from DownSyndromePregnancy.org: Diagnosis to Delivery: A Pregnant Mother's Guide to Down Syndrome, by Nancy Iannone and Stephanie Meredith, described as a "practical guide for expectant moms." Those who have created this resource and are working on additional booklets also host an "interactive blog, giving expectant parents a place to ask questions, voice concerns, and receive feedback" from a supportive community of other parents and advocates.

For parents who have received a prenatal diagnosis of Down syndrome and are weighing options about their pregnancy, the Down Syndrome Consensus Group has approved a newly revised edition of the excellent informational booklet, Understanding a Down Syndrome Diagnosis, previously available from Canister Books, now available at http://lettercase.org/products

The DS Consensus group included representatives from the National Down Syndrome Society, the National Down Syndrome Congress, the American College of Medical Genetics, the American College of Obstetricians and Gynecologists, and the National Society of Genetic Counselors.

Because medical professionals and counselors from these organizations have prepared and approved the information included in the booklet, it should be made more widely available in medical offices, at conferences, training centers and classrooms. Representatives from disability organizations, hospitals, medical offices and doctor's practices may order and distribute the newly designed books at low cost or no cost.

Down syndrome associations, parent groups and individuals may wish to make each of these resources available at their meetings and conferences. Having extra copies available at public events for mainstream families, and raising public awarenss via newspaper and television interviews and resource lists will help extended family and friends of expectant and new parents spread the word about their availability. Most of us were 'civilians' when we first heard the diagnosis of a baby with Down syndrome. We are fortunate that these publications are now available to share with those who follow us on the journey, including medical professionals, scientists and counselors.

Browse at your local bookstore, public library or online retailer for books like: Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives or Gifts 2: How People with Down Syndrome Enrich the World.

Genetic counselors, OB/Gyn offices and birthing centers should be aware of these resources; a brochure with local and national resources as well as links to those below could save families weeks or months of searching for information and support.

National Center for Prenatal and Postnatal Down Syndrome Resources
http://www.downsyndromeprenataltesting.com/prenatal-resources

Please provide local hospitals (maternity/birthing center social workers and nursing supervisors)
with these free printable resources for parents of newly diagnosed babies with Down syndrome and those with a prenatal diagnosis:

What Parents Wish They'd Known
Reflections on Parenting A Child with Down Syndrome
Kathryn Lynard Soper

http://www.woodbinehouse.com/Soper_booklet.pdf

What to Expect from Your Baby with Down Syndrome
A Perfect Lily - Letters to My Daughter
http://babynumber10.blogspot.com/2011/11/what-to-expect-from-your-baby-with-down.html

Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome by Nancy Iannone and Stephanie Meredith
http://downsyndromepregnancy.org

Down Syndrome Pregnancy site absorbed by University of Kentucky’s Human Development Institute (HDI)
http://downsyndromepregnancy.org/dsp-news-and-gratitude/

Nine Myths About Raising a Baby with Down Syndrome
http://www.fudgebananaswirl.com/9-myths-about-raising-a-baby-with-down-syndrome

Nutritional Supplements for Down Syndrome by Len Leshin, M.D.
http://www.ds-health.com/vitamin.htm

Study raises caution about high doses of supplements
http://ayl.lv/ZqH
https://www.fhcrc.org/en/news/center-news/2014/02/vitamin-e-selenium-prostate-cancer-risk.html

Down Syndrome: Shifting Perspectives at the Dublin Arts Council
http://www.youtube.com/watch?v=TQ61vJdqyWw

UK: Charming Film Celebrating 5th Anniversary Of The PSDS Support Group
Children with Down syndrome and their families:
http://youtu.be/oUJR_s4H4aQ

Medical providers involved with delivering a prenatal diagnosis can (and should) request a free copy of
Understanding a Down Syndrome Diagnosis once every two months
http://www.lettercase.org/free-booklets/

What If the Prenatal Test for Down Syndrome Comes Back Positive?
http://ow.ly/fE0pU
Qué hacer si el test de detección del síndrome de Down te da positivo?
http://elianatardio.com/2012/08/22/que-hacer-si-el-test-de-deteccion-del-sindrome-de-down-te-da-positivo/

National Center for Prenatal and Postnatal Down Syndrome Resources
I'm looking for new links to the information in Spanish - can you help?
http://www.downsyndromeprenataltesting.com/prenatal-resources

On Adopting a Kid With Down Syndrome
http://huff.to/KA8Xwx
http://www.huffingtonpost.com/kari-wagnerpeck/on-adopting-a-kid-with-down-syndrome_b_4608455.html

All We Learned About Being a Great Down Syndrome Group, We Learned From DSAIA
http://www.dsaia.org/dsblog?mode=PostView&bmi=1282183
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Content copyright © 2014 by Pamela Wilson. All rights reserved.
This content was written by Pamela Wilson. If you wish to use this content in any manner, you need written permission. Contact Pamela Wilson for details.

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Helicopter Parenting and Childhood Disability

Postnatal Depression and Newborn Diagnosis

Strangers Observing My Son with Down Syndrome

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