What Everyone Should Know About Down Syndrome

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Down syndrome is a genetic condition caused by an extra chromosome. It occurs in one in 700 - 900 live births and results when the fetus ends up with three copies of chromosome 21 instead of two. It can lead lead to "health problems, developmental delays and learning disabilities." - DSRF website

Let me clarify. Not every person with Down syndrome has health problems. Not all of them have delays in all areas. The cognitive or intellectual disability ranges widely, from mild to moderate. We've met so many children in the community who are different in their development. Some walk at the same time as typical kids, some take longer and have lower muscle tone. Some speak early on, some take longer. They're all individuals and all differ greatly.

One common factor is low muscle tone, which attributes to many of the differences for people with Down syndrome. It's not simply weaker muscle, it's a different type of muscle. The obvious things it affects are the ability to walk and use their hands. Not as obvious is speech. Their facial muscles are also differnet, so it's harder for them to use their tongue, lips etc. They are more likely to get ear infections because the muscles in their ears can't always get rid of water, which also then affects their speech.

Kids with Down syndrome do achive their milestones, it simply takes longer. Recent research has given us so many ways to work on their development and more and more people with Down syndrome are achieving fantastic things, including college degrees, marriage, business ownership and much more.

Our biggest challenges are awareness and acceptance. People with Down syndrome enjoy fulfilling lives like everyone else, but are often held back by society's perceptions and misassumptions. .

You can help in the language you, your family and friends use. It might not seem like much, but it goes a long way in changing people's attitudes. People don't "suffer from" Down syndrome. As one woman with Down syndrome said in response to that statement, "the only thing I suffer from is bad attitudes."

We don't call people without Down syndrome "normal." What is normal, anyway? We call them "typical." So, a child without delays is a typically developing child.

As in all special needs cases, we want to put the person first. Therefore, we don't say a "Downs child," we say, "a child with Down syndrome." It's a part of them, but not who they are.

The "R" Word

We don't like the word "retard" in any context. This is a big point for most people within the community and can be difficult to explain to people why it hurts.

Someone's goofy friend is not a "retard." A car breaking down is not being "retarded."

Avoiding use of the word yourself is a great help. Mentioning to someone else who uses the word that it's offensive, is an even greater help.

Here's a quote from the Spread the Word to End the Word website:

"Use of that R-word, “retard” or “retarded,” is hurtful and painful and whether intended or not, is a form of bullying.

Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. The R-word is just as cruel and offensive as any other slur. Visit to make your pledge today. Eliminating the use of this word is a step toward respect."