How to handle down syndrome in kids

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.

There's a lot of misinformation about Down syndrome, and for women who have received a prenatal diagnosis and for women who have just given birth and received a diagnosis for their child, accurate and up-to-date information is critical in making decisions and maintaining a realistic and positive attitude for the future.

According to Stephanie Meredith, writer of Understanding a Down Syndrome Diagnosis, a booklet that offers current information for medical professionals to deliver a diagnosis, "Most of the misinformation that exists is simply outdated information before early intervention, inclusion, and progressive healthcare were the norm.

Since society has begun investing in children with Down syndrome, life expectancy has doubled to about 60, and people with Down syndrome are increasingly completing high school, attending special college programs, and living independently."

The National Down Syndrome Society provides checklists for doctors' visits and other resources for medical intervention and support. But learning the facts about Down syndrome also involves understanding the social and emotional reality that most people with Down syndrome enjoy their lives, and that most families raising children with Down syndrome report positive benefits from their child's presence.

Siblings report greater compassion toward others, and parents report a lower divorce rate than the norm.When understood from both a medical and social perspective, Down syndrome is no longer a negative diagnosis.