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

Put Together Your Village

One of the joys of raising children comes from sharing their accomplishments with others. Many friends and family members would love to offer support, encouragement, and delight when your child learns new things.

According to Sue Levine, who conducted a six-year study of individuals with Down syndrome and their parents and siblings, published in American Journal of Medical Genetics, "Having a family member with Down syndrome tends to be an eye-opening and enriching experience. Brothers and sisters told us that they have more patience and acceptance because of their sibling. They treasure the small things in life, having learned important lessons in compassion and responsibility. The majority of parents shared with us that their outlook on life is more positive because of their child with Down syndrome. They affirmed that true success in life is not measured by accomplishments or possessions, but by love and small victories. While there are certainly struggles, as there are with parenting any child, the joys tend to far outweigh the difficulties."

The benefits of knowing a person with Down syndrome can extend beyond the immediate family and into the community. If you and your family have already been involved in a faith community, stay involved. You may have to work with your local church, synagogue, mosque, or other place of worship to create structures and practices that allow your child to be included. The Elizabeth M. Boggs Center on Developmental Disabilities at Robert Wood Johnson Medical School offers a list of resources for congregations and leaders of many different faith communities so that families with children who have disabilities can remain active members.

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