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For people with Down syndrome, family members, caregivers and professionals.

I have Down syndrome. What is it?

April 2017 | Shana Sexton, LCSW - Social Worker, Adult Down Syndrome Center

An interesting topic came up in our social skills group recently. The participants were teenagers and were all at an age when they were considering identity issues and thinking about the future. Some of them talked about how they think a lot about having Down syndrome and how it may affect their future plans. It had not occurred to us to cover this topic in our group but it was obvious from the comments of our participants that it is an important topic.

I did an Internet search and found quite a few articles about how to explain Down syndrome to other people, such as a child’s siblings or classmates. However, I found little advice about how to explain Down syndrome to someone who has it. (One of the few and perhaps the most entertaining is “How I Told My 7-Year-Old He Has Down Syndrome” by Kari Wagner-Peck. I especially love this article because she compares having Down syndrome to having super powers.)

Issues related to how having a disability will affect the future do often come up for our patients who are in their late teens and early 20s. At this age, they are considering what they might do after high school and may be realizing how their plans are different than the plans of their siblings or typical friends. This can cause people to think more about what having a disability means for them. Teens and young adults are often thinking about things like driving or getting married, especially when this is a topic among siblings or typical peers. This can be difficult for parents to address, as they aren’t sure if these things will be possible for their child and they don’t want to discourage their dreams.

I was curious to see what someone with Down syndrome would say about it and how it impacts their life, so I decided to ask someone. Here is what one of our volunteers, Jeff, said about Down syndrome: “Everybody can make a difference, whether they have Down syndrome or not. People can love each other if they have Down syndrome or not. It’s a part of the chromosomes. People can be afraid of it sometimes. I feel I can do anything or accomplish anything whether I have Down syndrome or not. I don’t look at myself as a person with Down syndrome. I look at myself as an adult who can make a difference in this life and be independent. I’m my own person. It’s about being yourself, even if you have Down syndrome.” What a great explanation! I think it speaks for itself.

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