A family with a Down syndrome child

Raising a Child with Down Syndrome

Down syndrome is a fairly common genetic disorder that affects one out of every 691 babies in the United States. This disorder results in lifelong intellectual disabilities, developmental delays, and health problems that will vary in severity based on the individual.

Having a child with Down syndrome can be a daunting task, especially at first. Fortunately, there are some things you can do to make your, and your child’s, experience with this disorder as easy as possible.

Be informed.

There are a lot of myths associated with Down syndrome, and it can be hard to know what you should believe when you first receive either a prenatal or a post-birth diagnosis. Making sure to do your own research and verifying that the information you receive is accurate and up-to-date is critical for both making decisions and maintaining a positive attitude about your child’s future.

Have a support system.

Since Down syndrome is fairly common, it may be very easy to find other parents in your area or online who are going through the same struggles as you and your child. There are several national organizations that work to provide support to parents of children with Down syndrome via conferences, stories, and information—including the National Down Syndrome Society and the National Down Syndrome Congress. Take advantage of these organizations and get more involved in their agenda to make Down syndrome feel less like a negative diagnosis.

Find the best doctors.

Depending on his or her specific needs, your child will likely need a team of doctors, therapists, and specialists in order to ensure they are getting the best care possible. Choosing doctors and pediatricians who are familiar with or specialize in Down syndrome cases can make a huge difference in the level of care and expertise your child receives. It can also be beneficial to look into some of the early intervention programs that are now available to infants and children with Down syndrome, as these can make a major difference in their ability to realize their abilities and significantly improve their quality of life.

Make sure your child is able to communicate.

Because of many factors, delayed speech and difficulty with articulation are common in kids with Down syndrome. This often results in children who want to and are able to communicate long before their mouths are able to produce intelligible words. Therefore, it is important to give your child opportunities to communicate in other ways so they can feel heard. This can include sign language, picture communication symbols, and other augmentative devices, if they are good with technology.

Finding ways for your child to communicate their wishes and desires can help to decrease the frustration and behavioral problems, which can in turn increase the quality of friendships and relationships during the first few crucial years.

Focus on the good things.

While it can be easy to focus on all of the things your child can’t do, you will be doing yourself, and your child, a favor by instead recognizing their distinct personalities and strengths. Responsive Teaching is one approach for children with special needs and focuses on responding to the areas of interest and strength that the child already exhibits, which can lead to positive emotions and growth rather than frustration and negativity.

Last Updated: December 10, 2015