Educational Materials - Down Right Beautiful

"The constructive debate isn't about bringing such children into the world,
but about helping them, and their parents, make their way in the world."

http://www.ndsccenter.org/
The NDSC offers the most up-to-date information for New Parents, Expectant Parents and Physicians delivering a diagnosis of Down syndrome. It also includes Power Point presentations and the companion transcripts that you can download free of charge discussing Down Syndrome and the Education Challenge, Supporting People with Down Syndrome, and Breaking the News. This is a wonderful on-line resource to help new parents learn about their child, assist expectant parents to make an informed decision, and "assist physicians facing the challenge of informing parents that a child has Down syndrome. Careful, well-informed consultations delivered with sensitivity can have a dramatic impact on parents' mental wellness and ability to cope. What you say and how you say it will have a life-long impact on the health and well being of your patient and child."

A great video for new families of a child with Down syndrome
made by the Down Syndrome Association of Cincinnati.
http://www.brightcove.tv/title.jsp?title=1285265709

Canister Co

Canister is an independently owned, creative design and publishing agency located near Atlanta, Georgia. In 2008, they created guides to provide current and reliable information about Down syndrome in an accessible format to an ever-increasing audience of expectant parents receiving a prenatal diagnosis. They developed two beautiful brochures that you can purchase: (1) Understanding a Prenatal Down Syndrome Diagnosis for expectant parents and (2) Presenting a Prenatal Down Syndrome Diagnosis for medical professionals using research published by Dr. Brian Skotko in the American Journal of Obstetrics & Gynecology and recommendations in ACOG practice bulletins 77 and 88. They offer the (3) Presenter's Kit which includes both brochures along with a PowerPoint presentation designed to introduce the materials to organizations, hospitals, and medical professionals. The technical writing in the guides cites the most recent studies and provides reliable resources for further information while the professional photography portrays individuals with Down syndrome in the context of their everyday settings. The expectant parent guide also includes a list of parent support groups in the United States. Canister donated 1,000 of these uniquely balanced and professional brochures for the National Society of Genetic Counselors (NSGC) Annual Education Conference and were distributed to hundreds of attendees. These brochures had a retail value of more than $10,000.

They also developed the Down Syndrome Prenatal Outreach Program, which is a comprehensive program providing materials to organizations who want to offer prenatal support to expectant parents receiving a prenatal Down syndrome diagnosis. The program will train organizations and parent volunteers to be Down syndrome representatives and be able to distribute these educational materials to medical professionals. It includes professionally designed letter templates for physicians, templates for Down Syndrome Representative training seminars, and numerous supplementary training materials. This program is free of charge and can be downloaded from their website.

http://canisterco.com/books/index.html

Expectant Parent Book - Understanding a Prenatal Down Syndrome Diagnosis

"After receiving a prenatal Down syndrome diagnosis, many parents are similarly overwhelmed and unsure where to turn for reliable information, but the timing is even more critical since parents must make vital decisions in a relatively short time. The Expectant Parent Guide was specifically created to provide them with insight about a Down syndrome diagnosis, a list of reliable resources, and, most importantly, a glimpse of the lives led by people with Down syndrome. The text has been expertly written to include reliable information from studies and medical publications that provide accuracy and assurance, and the photography has been specifically selected to portray how people with Down syndrome are an integral part of their communities and families... No other publication provides information balancing medical information and emotional rationality in a way that encourages the reader to thoughtfully explore options." High quality offset printing, 36 pages, perfect bound, full color, 6.5 inches square.

Medical Professionals Guide - Presenting a Prenatal Down Syndrome Diagnosis

"The Medical Professional Guide describes how to present a Down syndrome diagnosis using key references from American College of Obstetricians and Gynecologists practice bulletins 77 and 88 and recommendations included in the published prenatal Down syndrome diagnosis study conducted by Dr. Brian Skotko. The combined strength of the writing, references, design, and photography convey a professionalism that is essential when approaching medical professionals who regularly receive professional materials from other organizations and pharmaceutical companies. After consulting with multiple medical professionals to gauge the optimum format, the overwhelming feedback indicates a preference for a brochure optimized and distilled to one page. Our bi-fold format does just that with a professional elegance that mirrors the companion expectant parent book." (From Canister website) High quality offset printing, 4 panel bi-fold, full color, 6.5 inches square.

Presenter Kit

The presentation kit includes 5 copies of the Expectant Parent Book, 5 copies of the Medical Professional Guide, and a PowerPoint presentation designed to introduce the materials to organizations, hospitals, and medical professionals. This kit is great for organizations that are considering purchasing larger quantities of the books and want an opportunity to preview the materials to their organization and/or medical community. The presentation includes additional, outstanding photography depicting people with Down syndrome. Perfect for evaluation: 5 Books, 5 Guides, 1 Presentation CD.

Brian Skotko, M.D. M.P.P. is available to give workshops or keynotes on the following topics. (He is a genetics fellow at Children's Hospital Boston, Massachusetts General Hospital, and Brigham & Women's Hospital, has dedicated his professional energies toward children with cognitive and development disabilities.).

A Challenging Dynamic: Delivering a Diagnosis of Down Syndrome to New and Expectant Parents. Brian Skotko reviews the results of his research on how physicians deliver a prenatal and postnatal diagnosis of Down syndrome. The presentation includes highlights from his publications in Pediatrics and American Journal of Obstetrics and Gynecologies and includes "take-home" recommendations on how physicians can more effectively and compassionately deliver difficult news to new and expectant parents. This presentation can be adapted for both medical and non-medical audiences. (A podcast of his presentation at Vanderbilt University is available here. Scroll down to "Files" and click on Podcast_ _Compassionate Delivery of.mp3)

What your other children without Down syndrome are thinking: Sibling Issues. Through a series of interactive exercises, parents will explore what questions, needs, and concerns are often raised by children who have a brother or sister with Down syndrome. Parents and/or professionals will come away with practical answers to commonly raised questions. This presentation draws upon Brian Skotko and Sue Levine's publication in American Journal of Medical Genetics and their new book, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters.

Celebrating Life with Down Syndrome. All people with Down syndrome have talents and treasures to share with their communities. In this presentation, Brian Skotko draws upon success stories in his co-authored national award-winning book, Common Threads: Celebrating Life with Down Syndrome, to enable parents, professionals, and friends to discover the potential of all persons with chromosomal differences. This presentation can be adapted for large keynotes or small audiences. The workshop version focuses on a selection of readings and engages the audience in a guided self-reflection.

Brother-and-Sister Workshops. Brian Skotko and his colleague Sue Levine have been leading all-day and multi-day workshops for brothers and sisters who have siblings with disabilities at local and national conferences. In these workshops, brothers and sisters have opportunities, through interactive exercises, games, and role-playing scenarios, to learn more about disabilities in an accepting and confidential environment with peers. Brothers and sisters come away from the workshops with more information, social connections with peers, and early lessons on advocacy. Workshops can be adapted for siblings of all ages.