Rapid advances in clinical treatment and greater medical attention to people with Down syndrome during the 20th century have increased the life expectancy of individuals with Down syndrome. As many as 80 percent of adults with this genetic condition live to age 55 and beyond. This new longevity needs to be incorporated into lifetime planning when a child is born. The law assumes that people over the age of 18 are competent to manage their own affairs regardless of disabilities, and parents are no longer considered legal guardians after this point. If protective provisions are not in place, the courts will make important decisions. Physical, social, financial and legal issues must be considered, as well as siblings and service agencies. A well-made life plan is essential for long-term quality life for your loved one with Down syndrome.
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.
Human sexuality encompasses an individual's self-esteem, interpersonal relationships and social experiences relating to dating, marriage and the physical aspects of sex. Sex education, appropriate for the developmental level and intellectual attainment of individuals with Down syndrome, helps in engendering healthy sexuality, preventing unwanted pregnancy and diseases and in alleviating other problems related to sexual function.
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.
Ann Nobis, Speech-Language Pathologist
From first cry, to first look, to first smile, to first sound, to first thought, to first word, to first expressed idea, your baby will communicate with you and continue to grow with his or her communication skills throughout life. Your baby has been born with the innate ability to learn to communicate as all babies have been.
If you are a parent reading this, you likely have a child with Down syndrome, as I do. My intent with this article is to provide you with some information about how an occupational therapist (OT) may be able to help you and your child. Occupational therapists who work with children have education and training in child development, neurology, medical conditions, psychosocial development, and therapeutic techniques. Occupational therapists focus on the child's ability to master skills for independence. This can include:
- self care skills (feeding, dressing, grooming, etc.)
- fine and gross motor skills
- skills related to school performance (printing, cutting, etc.)
- play and leisure skills
When your child is an infant, your immediate concerns relate to his health and growth, development of the basic motor milestones, social interaction with you and others, interest in things going on around him, and early speech sounds and responses. At this stage, an OT may become involved to:
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:
A parent's first encounter with the Individualized Education Program--the IEP--can be intimidating. However, participating in special education planning is critical in assuring positive long-term outcomes for students with disabilities.
Parents and guardians of school-age children with disabilities need to be familiar with relevant regulations and procedures for developing an IEP to fully participate in IEP development and long-term planning. Similarly, students who have attained legal adult statues in their state and have assumed responsibility for their own IEP need information to assure information participation at their IEP meetings.
The special education system can be confusing, frustrating, and overwhelming. The Individualized Educational Plan (IEP) is the written document that outlines your child's specific educational program. We know a strong IEP is necessary for our child's individual needs to be met. Yet is is common for us to feel insecure and unprepared during our child's IEP meeting. Surrounded by teachers, administrators, and special education personnel, our voice can get lost. This toolkit was written to help you find your voice.
As family members of a child with Down syndrome, we come to IEP meetings with love for our child and a commitment to his or her education. We must also come with a strong understanding of the IEP itself, detailed information about our child's specific needs, and an understanding of appropriate goals. This IEP Toolkit is designed to help you gather the necessary information. Focused preparation is essential to the development od an effective education plan, and a strong IEP leads to improved educational success for your child.
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.
You Are Not Alone: For Parents When They Learn That Their Child Has A Disability
Patricia McGill Smith
Executive Director National Parent Network on Disabilities
If you have recently learned that your child is developmentally delayed or has a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.
Most importantly, your baby is a baby first and secondly, a baby who happens to have Down syndrome.
It is generally suggested that parents not wait to tell friends and family members about their baby having Down syndrome. Even though telling family members and friends about your child having Down syndrome will be one of the most difficult things you face, don’t be afraid. Most parents who have a new baby want others to be happy for them and to extend best wishes.
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.
I have a dream. My dream is born of 19 years of living with a daughter who has Down syndrome. It is a dream created by Amy as she continues to teach me, and others who know her, about life and living.
My dream is that the birth of every child be celebrated—whether or not that child has Down syndrome or some other disability. I say this with a heavy heart because I did not celebrate Amy’s birth. What a breach of faith that was! She has had to rise up against my early misgivings, sadness and disappointment. I worry that she knows somewhere deep inside that in those first few hours after her birth I didn’t want her. I wanted the baby who fit my ideals and my standards. Little did I know then that I had been given a gift—a daughter who would give true meaning to spirit, courage, love and joy. If only I’d known in those first dark hours that our life together would be more ordinary than extraordinary. If only I’d known that this daughter would more than fit my ideals and standards—she would fit hers, which are higher than mine.