Down Syndrome Awareness: the Family Aspect

Raising a baby is difficult enough, but how do you prepare yourself to raise a child with Down syndrome? Well, according to Down Syndrome Education Online, the first step is understanding. Stephanie Meredith, writer of Understanding a Down Syndrome Diagnosis, a free booklet, says that accurate and current information is critical in making decisions and keeping a positive attitude. Realize that the familial system is dynamic. Every family is different and families evolve over time. There is no one trick to raising a child with Down syndrome, every situation is unique. It is important for parents to recognize that while they influence their child’s behavior, the child also influences theirs and that stress and ignorance have negative effects on the whole family. Maintaining the healthiest of environments is vital in such a symbiotic relationship. Personal accounts like author Amy Julia Becker’s that appeared in the New York Times depict, first-hand, the confluence of issues families face adapting and coping. In her piece, Becker writes about the “strengths and weaknesses, challenges and gifts” that come from raising a child with Down syndrome.

It’s obvious families with children born with Down syndrome experience some extra demands and stress but fortunately there are resources to cope. Identifying and understanding what causes these difficulties allows families and health professionals to provide the appropriate support and services which lead to fruitful homes.

The National Rehabilitation and Information Center (NARIC) offers many resources for families living with a child with Down syndrome including abstracts specific to parents, families and siblings. Also available from the NARIC collection is “Family Adjustment and Adaptation with Children with Down Syndrome”. This article examines the personal experiences of two sets of parents and the adjustment of raising a child with Down syndrome. The article spans a variety of topics including: the family system, understanding the process of rearing a child with Down syndrome, stressors, and short- and long-term demands. Also included is a table of individual, family and community resources. This article may be ordered through NARIC’s document delivery service.

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