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Down Syndrome Etiquette

Updated: 7 days ago

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Down Syndrome Etiquette

Down syndrome etiquette is important and is truly blog-worthy! Please take just a few minutes out of your day to read and share this with others on any platform you can. Approximately one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition. Yet there's still a stigma surrounding Down syndrome (DS).

It's super important to be respectful of other humans along their journey in life. It's very frustrating for me and many others when we hear people say certain things about people with DS. Frustration doesn't help change things, but being an advocate and an ally does. So, I decided to write this blog about Down syndrome etiquette to help others who may be confused about what to say or may unknowingly be saying things that are offensive or hurtful to others, yes, even those without Down syndrome.

I'm always learning new things and asking important questions like;

  1. What can I do when I hear x, y, and z?

  2. What do you want others to know about Down syndrome?

  3. What it's like living with Down syndrome or raising children who were born with DS?

One thing I can tell you is that our words matter!

Being a parent is exhausting. Being a parent or caregiver to a person who has DS is double duty exhausting. Not only are they raising their child, they're likely attending therapy appointments (occupational, speech, and physical) with their children, and being advocates for all people with Down Syndrome. It should be no surprise that sometimes they don't have the "extra" energy to correct others. To be honest, the responsibility falls on us as individuals to do better and treat people with respect.

Here are some other things to consider:

Please say, "baby with Down syndrome", not "Downs baby" and "She has Down syndrome" instead of "She has Downs".

DS doesn't define who a person is. Think about something you don't like about yourself and put a name or term on it and imagine how you would feel if every time someone referred to you they said, "Fat Lady", or "Ugly Man". It hurts, it's inappropriate, and it makes the person saying it look like a complete jerk.

Your words matter, ALL THE TIME!

Using the terms "retard", "mentally retarded", "mentally challenged", "retarded", or saying it in any context is insulting and completely inappropriate. Even when not referring to Down Syndrome the implication remains. If you're using this term, stop it!

Not sure how to stop?

  1. Make a habit of stopping and thinking before you speak.

  2. If you slip up and catch yourself using this term correct yourself and then apologize out loud for your wrongdoing. Don't overlook it and move on; “promising” yourself you won’t do it again. Nope!

  3. Correct others politely without apology. Not saying something still says something. Think about that.

Saying children with DS are the "happiest children you ever met" is offensive to most parents of children with Down Syndrome.

Saying that they are "the happiest children" implies that they don't have feelings. That their parents have it easy. It implies that children with DS don't ever cry nor have bad days. This is quite the opposite; remember DS doesn't define a person. They have good and bad days and struggles and challenges like everyone else. Parenting is not easy, parenting children with Down syndrome; you guessed it, still not easy!

Appropriately, "cognitive disability” has replaced “mental retardation” It's Down syndrome, not Down's syndrome. The person who named the condition did not have Down syndrome. An "apostrophe s" implies ownership or possession. DS is not contagious, it's a condition. You either have DS or you don't. Referring to someone with Down syndrome as "special" or asking if they do the same things as "normal" kids should be avoided. We're all special and unique. Comparing a child with DS to other "normal" kids implies they are abnormal! People with and without Down syndrome are more alike than different. Say it and repeat it! They are strong, smart, funny, and capable of great things, just as you are!

If you know someone who has a child with Down syndrome, please do not forget the siblings!

Despite being typical siblings at home who play together, share secrets, and argue, when they are out of the house they become fierce protectors of their siblings. Despite being fierce, it's nice to have others recognize them, to spoil them a little, to see their light shine as individuals, not just the sisters or brothers to the kids who have DS.

I often find myself thinking what I would hope for if I had Down syndrome. I believe I would want to be heard, valued, respected, and accepted so I could enjoy life a little more and worry a little less! Come to think of it isn't that what most all of us want in life?                          

I hope that this blog was well received by you and by those whom you share this with! We want to hear from you in the comments below or email us at

Resources for our readers:

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Authored by Elizabeth Luke

Elizabeth is the founder and CEO of The Jacksonville Baby Company. With certifications in Postpartum and Infant Care Support, Childbirth and Newborn Care Education, Lactation Support, and Infant Sleep, Elizabeth is a wealth of knowledge and has a heart for helping parents live their best lives while also ensuring their children are safe, happy, and leading the healthiest lives possible! Contact us today for day, night, and live-in support! 

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