By: Dorothy Robison, Marty Wyngaarden Krauss, Marsha Mailick Seltzer
Parents of children with Down syndrome commonly ask about the future: "What will life be like for my child when he is grown? Will it be possible for my child to live independently or semi-independently? How will I, as a parent, make the best decisions regarding how to support my child as an adult? What will my life be like?" In the early years, as their child participates in early intervention programs, parents begin to acquire a knowledge base about their child's needs and the services required to enhance their child's development.
As the child makes the transition into the public education system and parents begin to see their child in relation to other children without disabilities, they begin to form hope and awareness of the many possibilities that await adults with Down syndrome. They realize that much depends on the blending of public services and private dreams. They also realize that, regardless of which public services are available, the role of the family (and, especially, the efforts of the parents) remains paramount in shaping the possibilities of the child with Down syndrome. Parenting never ends; it is a lifelong responsibility that can be approached with joy, trepidation, or worry.
All rights: Beacon Press/ 288 pages / October/Hardcover / 0-8070-2816-9 $25.00 U.S. / $40.95 CAN
A powerful story, based on an award-winning series of articles, about a modern family and Down syndrome.
Halfway through their first pregnancy, Greg and Tierney Fairchild hear the news all expectant parents dread: their baby isn't perfect. A routine ultrasound reveals that the fetus Tierney carries has a major heart defect. Making matters worse, the nature of the defect leads doctors to suspect it might be a symptom of Down syndrome. With those events as its starting point, Choosing Naia examines the exploding world of prenatal information—and the emotional maelstrom that ensues from an unwanted test result—through the prism of the Fairchild family's experiences. Rapid advances in prenatal testing are enabling doctors to diagnose with great certainty a wide assortment of problems inside the womb. But that's where certainty ends. As they struggle with grief and confusion, would-be parents have only days or weeks to make choices—abortion, adoption, or continuing the pregnancy and keeping the child—whose reverberations are bound to alter the course of many lives. In the Fairchilds' case, those choices are further complicated by race. Having married across racial lines, Greg and Tierney can imagine the discrimination felt by the disabled. Ultimately, that understanding informs their decision about whether and how to parent a disabled child. Once the choice is made, they face a difficult delivery, where Tierney's vigilance literally saves her baby's life, and high-risk open-heart surgery before the baby they name Naia can celebrate her first birthday. After clearing those hurdles, the Fairchilds face new barriers they must tear down on behalf of their beloved child for all the days of their lives.
Mitchell Zuckoff won the 2000 Distinguished Writing Award from the American Society of Newspaper Editors for his series "Choosing Naia," which also was honored by the National Down Syndrome Congress and the American Association on Mental Retardation.
Our FAQs present information from La Leche League International on topics of interest to parents of breastfed children. Not all of the information may be pertinent to your family’s lifestyle. This information is general in nature and not intended to be advice, medical or otherwise. If you have a serious breastfeeding problem or concern, you are strongly encouraged to talk directly to a La Leche League Leader. Please consult health care professionals on any medical issue, as La Leche League Leaders are not medical practitioners.
How wonderful that you want to give your baby the precious gift of breast milk! Babies with Down syndrome experience special benefits from breastfeeding beyond the myriad of advantages to healthy newborns:
ECDCD provides information, referral and support to families and professionals working with children, both typically developing and those with special education needs, ages birth through five
A Promising Future Together National Down Syndrome Society: New Parents A Guide for New Parents of Children with Down Syndrome
Congratulations on the birth, or expected birth, of your baby! We understand that your baby may have Down syndrome. You probably have a million questions, concerns and fears right now. That’s okay. The most important thing to keep in mind is that this diagnosis is not as life changing as the fact that you have a new baby. And in most ways, your baby will be just like other infants. Every baby needs to be fed, held and most of all, loved.
There will be challenges in raising your child, but there will also be many, many joys. It’s normal to be nervous about what lies ahead, but remember that Down syndrome is a condition your baby has, it is not who your baby is. Now is the time to begin learning all you can about Down syndrome and this brochure is a great place to start.
Babies with special needs are often bombarded with a variety of health problems early on. Those babies who have Down syndrome often face respiratory tract infections and bowel problems. They can benefit from the gentle protection human milk provides. Breastfeeding also helps establish a bond in the midst of the strong emotions and high stress surrounding the birth of a child who has special needs.