Wednesday, October 10, 2012

Understanding a Down Syndrome Diagnosis

Who was there to really explain our son's diagnosis?  Yes, the doctor could tell us what our tests said.  But who was really there to help us understand?  I wish I could say we were offered tons of support and resources when we first got that diagnosis.  I wish someone could have been there to guide us through our confusion.  I wish we had been offered a place to go to get information.

The Joseph P. Kennedy Foundation has a wonderful booklet available to assist new parents and parents to be understand the scary words that have just been said to them about their child.  They don't have to be scary words.  And I am glad that there are resources that are being developed to help these parents.

About the booklet.

The Joseph P. Kennedy, Jr. Foundation’s Understanding a Down Syndrome Diagnosis is an accurate, balanced, and up-to-date booklet for use when delivering a diagnosis of Down syndrome. The booklet is the only prenatal resource to have been reviewed by representatives of the national medical and Down syndrome organizations and is available in both print and digital formats. You can request a printed copy through your medical provider or download an ePub for your smartphone, tablet, or desktop.
Understanding a Down Syndrome Diagnosis covers the following:
  • Available health and education services;
  • Common medical conditions for babies with Down syndrome;
  • Information about pregnancy options;
  • Helpful resources about the condition;
  • Spanish translation included in all booklets;
  • Optimization for different reading levels.

Download the book for free HERE. 

A little about the organization.

Statement of Philosophy

The Joseph P. Kennedy, Jr. Foundation believes that persons with intellectual disabilities have the ability to live, learn, work, recreate, and worship like everyone else. We recognize that people with intellectual disabilities may need assistance to do these things.
We believe that families of people with intellectual disabilities, especially families of children with intellectual disabilities, benefit from support and information to successfully include their family member with mental retardation (intellectual disabilities) in the everyday activities of their community.
The Foundation works to improve the lives of people with intellectual disabilities and to prevent the causes of intellectual disabilities.

  1. Enhance the quality of life of persons with intellectual disabilities and their families.  
  2. Provide seed funding to capitalize on Federal and/or State or Local spending on behalf of persons with intellectual disabilities and their families by funding initiatives that evolve beyond where existing programs are going, and do not duplicate public efforts.
  3. Increase professional and public awareness of the needs of persons with intellectual disabilities and their families.
  4. Work to reduce the incidence of intellectual disabilities.
And the brochure created by this foundation have received kudos and endorsement by prominent physicians.  Read about it in this recent press release.

Prominent Physicians and Scholars Endorse the Joseph P. Kennedy, Jr. Foundation's "Understanding a Down Syndrome Diagnosis" at the University of Kentucky's HDI

Prominent physicians and academics nationwide are endorsing the Joseph P. Kennedy, Jr. Foundation's "Understanding a Down Syndrome Diagnosis" as the most balanced material that healthcare providers can provide to expectant parents following a prenatal diagnosis at

Lexington, KY, October 10, 2012 --( Prominent physicians and scholars nationwide are endorsing the Joseph P. Kennedy, Jr. Foundation's "Understanding a Down Syndrome Diagnosis" as the most balanced material that healthcare providers can give to expectant parents following a prenatal diagnosis. The complete list of physicians and scholars can be found at ( The booklet was uniquely prepared in 2010 with assistance from the Down Syndrome Consensus Group, including representatives of the American Congress of Obstetricians and Gynecologists, the American College of Medical Genetics and Genomics, the National Society of Genetic Counselors, the National Down Syndrome Congress, and the National Down Syndrome Society.
Dr. Brian Skotko, Co-Director of the Down Syndrome Program at Massachusetts General Hospital states, "When an expectant couple receives a prenatal diagnosis of Down syndrome, providing accurate, up-to-date, and balanced information about Down syndrome becomes an important and immediate goal."

Dr. Alison Piepmeier, Director of Women's and Gender Studies at the College of Charleston, says, "Learning through prenatal testing that your fetus has Down syndrome can be unexpected, confusing, and difficult for many potential parents. In this booklet, those individuals will receive the most up-to-date information about what having a child with Down syndrome might be like for them as well as discussion of other options - including termination and adoption. Photographs of children with Down syndrome at play allow readers to observe life with the condition. It's a beautifully done book with many resources and a fair and unbiased look at the options most individuals will consider after a diagnosis of Down syndrome. I would recommend this book to any person needing more information about a diagnosis of Down syndrome."

A recent study published by Levis et. al. in the American Journal of Medical Genetics found that the booklet parallels what women who are or may become pregnant said they need to know about Down syndrome, including "clinical information about DS, information about families with a child with DS, the degree of medical complications, resources for parents, among many other topics. The booklet also contains many photographs of children with DS engaging in everyday activities."

"Understanding a Down Syndrome Diagnosis" is administered by the University of Kentucky's Human Development Institute (HDI) and is available at as a free digital download. Medical professionals can request a free printed copy up to every two months to share with their patients, and high quality printed copies are also available for public purchase. All proceeds from book sales are used by HDI to continue to support the program.
Contact Information
University of Kentucky Human Development Institute
Stephanie Meredith, Lettercase Program/Medical Outreach Director

Be gentle.

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