• Down syndrome is a genetic condition occurring when a baby is born with three copies of chromosome 21 rather than the usual two. Because there are three copies of chromosome 21, Down syndrome is also known as trisomy 21. This additional genetic material causes the characteristics associated with Down syndrome
  • There are over 400,000 people living in the United States with Down syndrome. Down syndrome is the most frequently occurring chromosomal abnormality and is seen once in every 691 live births.
  • Although the incidence of Down syndrome increases with maternal age, 80% of children with Down syndrome are born to mothers under the age of 35. This is because more women under the age of 35 are having babies compared to women over the age of 35.
  • The extra 21 st chromosome causes children with Down syndrome to be at an increased risk for certain medical conditions, share similar physical features and results in some degree of cognitive delay. It is important to remember that every child with Down syndrome is unique and may have many or few of the characteristics associated with Down syndrome.

-People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, gastrointestinal issues, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

-A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.

-All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

  • People with Down syndrome want to be accepted and included. They have goals and dreams and want to be provided with choices and opportunities. People with Down syndrome are active in their communities, schools and jobs.
  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

 

Pregnant?

If you have just received a prenatal diagnosis of Down syndrome, please know that you are not alone.  KIIDS is ready to provide information, support, and guidance.  You can read various freely available resources on your own, or contact us for in-person, phone, or e-mail support.  We know pregnancy post-diagnosis can be a scary, uncertain time, but our experience has shown that these feelings are temporary, and typically replaced after the baby’s birth with joy and celebration.  In the meantime, we are here for you.

Resources

Immediately after a diagnosis: http://lettercase.org/

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 and is part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute (HDI). 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.

During Pregnancy, for parents and relatives: http://downsyndromepregnancy.org/

DownSyndromePregnancy.org is part of the National Center for Prenatal and Postnatal Down Syndrome Resources at the University of Kentucky’s Human Development Institute (HDI).

DownSyndromePregnancy.org offers support to expectant parents who have received a prenatal Down syndrome diagnosis and are moving forward with their pregnancy.

The website offers a free downloadable practical guide for expectant moms, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome which was co-written by KIIDS prenatal support director Nancy McCrea Iannone. The website also host an interactive blog, which gives expectant parents a place to ask questions, voice concerns, and receive feedback.  The pregnancy book can be downloaded for free.  A printed version can be provided to you by KIIDS are by ordering through Woodbine House. http://woodbinehouse.com/diagnosis_to_delivery.asp .

Expectant parents may find the following blog posts particularly helpful when telling friends and family the news about a diagnosis:

Parent feedback on “telling the news”: http://downsyndromepregnancy.org/telling-people/

Sample e-mail to loved ones: http://downsyndromepregnancy.org/telling-the-news-sample-e-mail/

For Friends and Relatives:

DownSyndromePregnancy.org offers valuable information for friends and relatives whose loved one is expecting a baby with Down Syndrome. The website offers a free downloadable practical guide for friends and relatives, Your Loved One is Having a Baby with Down Syndrome which was co-written by KIIDS prenatal support director Nancy McCrea Iannone. A printed version can be provided to you by KIIDS are by ordering through Woodbine House. http://woodbinehouse.com/diagnosis_to_delivery.asp .

Stories:

Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper.

http://www.woodbinehouse.com/main.asp_Q_product_id_E_978-1-890627-85-0

 

A Good and Perfect Gift by Amy Julia Becker

http://www.amazon.com/Good-Perfect-Gift-Expectations-Little/dp/0764209175

 

The Shape of the Eye by George Estreich

http://www.barnesandnoble.com/w/shape-of-the-eye-george-estreich/1101109087?ean=9780399163340

 

What Parents Wish They’d Known

http://www.woodbinehouse.com/WhatParentsWishThey’dKnown.asp

 

Support from KIIDS Organization:

E-mail support: KIIDS Prenatal Outreach Director Nancy McCrea Iannone is available for e-mail support at  nancy@kiids.info

Phone support: E-mail your phone number to KIIDS Prenatal Outreach Director Nancy McCrea Iannone, along with available times, and she will contact you.

In-person support: If you wish to meet with KIIDS Prenatal Outreach Director Nancy McCrea Iannone we will arrange a meeting.  We can meet with you one-on-one, or with any family members you wish.  If you desire, we can make arrangements for you to meet people with Down syndrome of various ages, or their families. We can match you with a parent mentor if you wish, including parents who have had a prenatal diagnosis, or who have experienced a specific medical condition. You may also attend any KIIDS functions during your pregnancy. Our events calendar along with RSVP information can be found here.

Resources: KIIDS has various resources available to you, including a new parent packet, the books mentioned above, and various other books.  We will mail you or deliver to you any of these materials.

Please check out these links to receive more information about Down syndrome.

Down Syndrome Pregnancy

Access a free downloadable practical guide for expectant moms, Diagnosis to Delivery: A Pregnant Mother’s Guide to Down Syndrome and an interactive blog, which gives expectant parents a place to ask questions, voice concerns, and receive feedback.


Early Intervention in New Jersey

Early Intervention provides your child with the start they need to reach their full potential.


National Down Syndrome Society

The NDSS is committed to being the national leader in education, research and advocacy so that all people with Down syndrome may realize their life aspirations.


National Down Syndrome Congress

The NDSC provides information, resources, support and educationconcerning all aspects of life for individuals with Down syndrome.


Downsyndrome.com

Downsyndrome.com offers links to other websites with information about Down syndrome.


Medical Information

Dr. Len Leshin is a medical doctor and father of a child with Down syndrome. Dr. Leshin has written essays dealing with a variety of topics related to Down syndrome.


Uno Mas 21

Unomas21.com is a message board for parents of children with Down syndrome. On Uno Mas you will be able to post messages and/or questions.

 

Education

KIIDS has created a Power Point presentation which explains Down Syndrome at an appropriate level for grade school children.  If features beautiful photos of our families taken by talented professional photographer Claire Bunn.  You may download the power point for use in an elementary school for educational purposes. Any other use of the text or photography is prohibited.

 

DownSyndromePregnancy.org has an entire list of educational materials suited to school presentations for a variety of ages.  The list is available here: http://downsyndromepregnancy.org/educational-materials-for-schools-on-down-syndrome/ .

 

The Down Syndrome Foundation of Orange County has a treasure trove of educational materials for use by schools and parents in educating children with Down syndrome.  You may access their website here: http://dsfoc.org/

 

Down Syndrome Education International has materials available to parents and educators which will help in educating a child with Down syndrome. They also have a variety of research-based articles related to Down syndrome and education.  You may explore their website here: http://www.dseinternational.org/en-gb/

 

Special needs publisher Woodbine House has a large number of books addressing the educational and therapeutic needs of individuals with Down syndrome.  Their list of Down syndrome materials is available here: http://www.woodbinehouse.com/Down-Syndrome.29.0.0.2.htm .

 

New Jersey-based Information:

Statewide Parent Advocacy Network

http://www.spanadvocacy.org/

 

New Jersey Coalition for Inclusive Education

http://www.njcie.net/

 

Southwestern New Jersey Special Education Parent Leaders (on Facebook)

https://www.facebook.com/groups/SouthWestNJSEPLG/members/