How to Raise a Child With Down Syndrome: Advice and Resources

Down syndrome occurs in one of 691 births, or 6,000 births per year in the U.S., as a result of the presence of an extra chromosome 21 at conception. Although individuals with Down syndrome tend to experience some health problems throughout their lives, recent medical advances have increased their life expectancy. Moreover, parents of children with Down syndrome have access to therapeutic and educational supports through early intervention and the public school system. A recent study published in the American Journal of Medical Genetics demonstrates the positive impact of Down syndrome on families; it found that 79 percent of parents report that their outlook on life was more positive because of their child, 94 percent of siblings report feelings of pride about their sibling with Down syndrome, and 99 percent of people with Down syndrome feel happy with their lives.

Gerald Mahoney, Ph.D., who developed a research-based strategy called Responsive Teaching for improving cognition, behavior, and communication in children with special needs, says: "Parents are far more influential on their children's development than teachers and therapists are. Early developmental learning for all children can occur in the context of any interaction or activity the child is participating in throughout their day. And parents, especially in the first five years, have much more opportunity to interact with their children than do teachers in classrooms or related service specialists." In other words, our role as parents makes a big difference in our children's development.

When our older daughter, Penny, was diagnosed with Down syndrome at birth, it felt daunting to consider the medical, social, educational, and behavioral challenges ahead. I had no idea how much support and encouragement we would receive from family, friends, and the larger community of other parents with kids with Down syndrome, as well as from dedicated and caring therapists, teachers, and medical professionals. Although we have many years to come, and many lessons to learn as we parent Penny and our other children, here are a few pieces of advice that I and other parents of children with Down syndrome can offer.