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By Marcia Van Riper, R.N., Ph.D.
What Families Need to Thrive
Reprinted from Down Syndrome News, a publication of the National Down Syndrome Congress (NDSC).
My program of research concerning families of children with Down syndrome started more than 15 years ago when I began working with Nealy Rothe, a young girl with DS, and her family as part of my graduate studies in nursing at the University of Wisconsin-Milwaukee. Nealy's parents not only shared their own stories of becoming aware of and living with Nealy's diagnosis, they quickly introduced me to the "world of DS."
Within a relatively short time, I was attending DS support group meetings and making presentations at local hospitals with mothers of children with DS. I also conducted my first research study, Parental responses to the birth of child with DS. This study's most imponant finding was that the families I interviewed did not sound like the families of children with DS I had read about in the literature. That is, rather than using words like "burden," "tragedy," and "suffering" to describe their child and the experience of raising a child with DS, these parents used words like "joy," "challenge," and "thriving."
The families I interviewed consistently reported that the positive consequences associated with raising a child with DS far outweighed the negative consequences.
Since completing my first study in 1987, I have had the pleasure of working with and learning from more than 350 families that include a child with DS. To date, I have conducted six different studies about families of children with DS. Some of these studies focused on a specific event, such as becoming aware of the diagnosis. Others focused on family-provider relationships or how parents, siblings and the family as a unit respond to the challenges associated with raising a child with DS.
Currently, I am working with a colleague of mine at the UNC-Chapel Hill School of Nursing, Dr. Suzanne Thoyre, on a study concerning feeding issues for children with DS and their families. I also have an ongoing study concerning the family experience of prenatal screening for DS.
Initial Sources of Uncertainty
The unexpected diagnosis of DS. Despite increased use of prenatal testing, many parents do not become aware of their child's diagnosis of DS until after the child's birth. Most parents enter the birth experience expecting to have a healthy child, not one with health problems and developmental delays. One mother noted, "When a child is conceived; a dream is born. The dream image [is of] a healthy, strong, and clever child who with confidence and success, fulfills a parents desire to bear a child... when we received the news that she had DS, it was as if the child of our dreams had died."
Parental concern about the child's future and the family's future. For many new parents, becoming aware of their child's diagnosis of DS and associated health, development, and educational needs is like entering a whole new world - a world filled with health care providers from a wide variety of disciplines, support groups and early intervention programs. It is a very different world than the one they imagined and for which they planned. Some parents report feeling the need to pin down or forecast the future.
Apprehensions regarding parenting abilities. Initially, many new parents feel inadequate or unprepared to care for a child with DS. Early access to support and guidance from professionals with expertise in DS, as well as other parents of children with DS, can play an important role in decreasing apprehensions about raising a child with DS. Unfortunately, not all parents get this. Parents with inadequate support and guidance are more likely to have difficulty dealing with the ongoing challenges associated with raising a child with DS and may experience decreased individual and family well being.
Initial responses of health care providers. The initial responses of health care providers can have a profound impact on parental uncertainty. Parents who are informed of their child's diagnosis of DS in a caring, sensitive manner by health care providers who have access to up-to-date information about children with DS and their families experience less uncertainty and are in a better position to deal with the ongoing challenges associated with raising a child with DS. Parents who are given outdated information in a cold, uncaring manner may have difficulty moving forward. According to one father, "the failure of others to inform us adequately from the start - that fostered a climate of uncertainty." A mother noted, "They generally ignored me and avoided talking about my daughter. They didn't realize that what I wanted and needed was someone to say, 'Now she's here, it is time to go on,' they made time stand still. I couldn't move forward."
Ongoing Sources of Uncertainty
The child's educational program involvement. Many parents report experiencing increased uncertainty when their child with DS changes classes, teachers, and educational programs.
Parental concern about the future. Now that life expectancy for individuals with DS has increased to 55-60 years, there is greater uncertainty regarding who will provide care and support for individuals with DS when they reach adulthood. One approach that has helped to decrease parental concern about the future is devoting certain support group meetings or conference sessions to a discussion of how best to meet the needs of adults with DS. It also may be helpful for parents of young children with DS to talk with parents of young adults with DS. However, due to all the changes that have been made in the care, education, and treatment of individuals with DS, adults with DS today, may be very different from adults with DS 10 to 20 years from now.
The child's health status. For many parents of children with DS, the child's health status is a major source of uncertainty, especially during the child's first year of life. Using the DS Health Care Guidelines (available on our site) helps to decrease uncertainty associated with the child's health status because the guidelines identify health concerns commonly seen in individuals with DS and they provide parents and health care professionals with a roadmap to follow in terms of recommended evaluations and treatments.
More Key Findings
Siblings of children with DS wrote the following. "My brother has taught me more than he will ever know. He has taught me patience and how to be more accepting of others." And, "He has been a blessing to our family. We were getting way too comfortable and set in our ways. As soon as he came into our family we had to stretch ourselves. He has taught us the meaning of love and how the product of love can grow and become such a beautiful person."
The more I work with and learn from families, the more I believe that the phrase "A Change of Plans" (used in a new parent booklet developed by the parents of children with DS that I worked with in Milwaukee, WI) captures the family experience of giving birth to and raising a child with DS. Giving birth to and raising a child with DS is not an awful experience or a tragedy: it is a different experience. Welcome to Holland, written by the mother of a child with Down syndrome, Emily Perl Kingsley, conveys this more eloquently than I will ever be able to.
How to Thrive and Be Resilient
Douglas Malloch's poem, Be the Best of Whatever You Are, says this well.
be a scrub in the valley - But be
The best little scrub by the side of the hill.
If you can't be a bush - be a bit of the grass,
If you can't be a muskie, then just be a bass -
We can't all be captains; we've got to be crew.
There's big work to do, and there's lesser to do.
If you can't be a highway, then just be a trail.
It isn't by size that you win or you fail -