How to Live Well with Down Syndrome (Teens)

As a teen with Down Syndrome, you already understand that you’re different. You’ve recognized that your face is unique, you learn different things from most teens your age, and you struggle with many challenges that most people don’t face. You may sometimes feel different, but that’s okay. You can make the most of it and thrive, even in your teen years.


EditUnderstanding Down Syndrome

Understanding your disability is one important part of living well with it.

  1. Learn the basics of what Down Syndrome means. Down Syndrome has several symptoms, most or all of which you will experience.
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    • Different face and body—This includes wide slanted eyes, a flat face, little hands and feet, short height, and other unique features.[1]
    • Intellectual disability—You may have extra challenges learning in school.
    • Low muscle tone—Babies with Down Syndrome can be very “floppy” and it may take longer for them to learn to walk.[2] By teen years, though, many people with Down Syndrome are quite strong!
    • Health problems—People with Down Syndrome are more likely to have heart problems, stomach problems, hearing disabilities, eye problems, and more. You may get sick easily.[3]
  2. Learn where Down Syndrome comes from. Down Syndrome is in your DNA, the code that gives instructions on how to build your body. You have had it since before you were born, and you will have it all your life.[4]
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    • Chromosomes are groups of DNA. People with Down Syndrome have an extra chromosome—specifically, the 21st pair comes with one extra. You may have one whole extra chromosome, or just part of one.
  3. Check out Down Syndrome websites. There are groups that focus on helping people with Down Syndrome and their families. They may have useful advice for you. Here are a few websites:
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    • National Down Syndrome Society[5]
    • National Association for Down Syndrome[6]
    • Self Advocacy Online[7]

EditLiving Happily

  1. Discuss with your parents or guardians about questions or worries that you have. They love you very much and want to look after you. They can answer many of your questions and help you through your challenges.
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    • Ask them about Down Syndrome. You can show them this article if you want to!
  2. Be kind to other people. People with Down Syndrome can be fantastic helpers and great friends. Be nice to your friends and to other people you know, and help people when they are having a hard time.
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  3. Work hard in school and therapy. These will teach you many important life skills. If you work hard, you’ll be able to learn a lot and be prepared for being an adult someday.
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  4. Give yourself plenty of time to relax. Between school, therapy, and other stuff, life can get very busy! It’s important to take time to relax each day, so that you don’t feel too stressed. Taking good care of yourself is an important part of living well.
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    • Keeping a balanced life is important. Working hard is good, but not if it stresses you out a lot. Talk to someone if this is becoming a problem.
  5. Find people you can talk to when you’re having a hard time. It’s important to have people in your life who support you. Choose someone who is a good listener and a good helper, and talk to them when you have problems.
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  6. Do not keep bullying a secret. Bullying is a serious issue, and if you are being bullied, you deserve help! Your family and teachers care about you, and they want to help you if something bad happens to you. You are not being a burden by speaking up.[8][9]
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    • If someone else is being bullied, talk to an adult about what is going on. The adult can help them. You can also help by being kind and being their friend.
    • Adults can be bullies too. If a grown-up is hurting you or making you upset, that is wrong, and you don’t deserve that.
    • Remember, “I’m okay, you’re mean.”
  7. Be with people who make you happy. Think about people who make you laugh and smile—people who make you feel happier when you hang out with them. These people are great friends.
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EditLoving Yourself

You are a worthwhile and important person. Having Down Syndrome does not change that.

  1. Get rid of any bad ideas you have about disabilities. A disability means that you face extra challenges in the world, and many people have different abilities than you do. It does not mean that you are broken or a burden. Plenty of people with disabilities, including people with Down Syndrome, live happy and wonderful lives.
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  2. Don’t compare yourself to other people. Everyone is good at some things and bad at others. It isn’t helpful to compare and see where you aren’t as talented as other people. You are talented in your own way.
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    • Remind yourself that life isn’t a race or a competition. You don’t need to be the best or be the first.
    • For example, maybe your sister is better at science than you are. That doesn’t change the fact that you might have a beautiful laugh, work very hard, and be great at cheering people up when they’re sad.
  3. Meet other people who are like you. Look for Down Syndrome groups or disability groups in your area. You can also check social media sites like Facebook or Tumblr.
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  4. Work on your talents. Down Syndrome is one piece of you, and not all of you. What do you like to do? Think about things from dancing to painting to helping other people. Find your way to shine.
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  5. Remind yourself how special you are. If you ever feel bad about yourself, it helps to have reminders that you are a good person. Here are some ways to do this…
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    • Write a list of your favorite things about yourself. Try things like “I’m good at giving hugs when people need them” and “I’m funny.”
    • Keep a box filled with nice notes about yourself. Try notes from teachers and therapists, thank you cards, and nice things on your report card (like “hard worker”). You can even explain to your family members what you’re doing and ask if they’ll write you a little note!
    • Look at pictures of yourself with your family and friends. Remember how much they love you.
  6. Accept that you’re different. You are not going to be like other teenagers. This is okay. Instead of worrying about fitting in, focus on what makes you special. It’s okay to be unique.
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  7. Remember that it’s okay to have bad days. Some days will be challenging. Sometimes you will feel frustrated, worried, or sad. This is normal. You are still okay.
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    • If you are often feeling this way, then it’s important to tell someone, because you may have a sickness called depression.
  8. Focus on the good things. Everyone has challenges and gifts, and you can’t change what you were given. However, you can choose to make the most of it. Work to do your best, bounce back from your bad days, and stay positive.
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