Down syndrome awareness doesn’t end October 31

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October is only the beginning of Down syndrome awareness. For our family, Down syndrome awareness happens every day.

Others might only be aware of Down syndrome every once in a while, some never. My hope is that no one, especially someone receiving a prenatal Down syndrome diagnosis or the doctor on the other side of the desk, will go through life not knowing the joys of Down syndrome.

Some people’s awareness of Down syndrome, as I wrote about in previous posts, is limited to a glance at an individual in public. People then make their own conclusions about that individual’s and family’s happiness. That’s not awareness, it’s making an assumption.

Awareness means reading stories of real life, having actual conversations with people with Down syndrome and their families, and forming an opinion based on facts and research. An example is the survey of self-advocates (people who have Down syndrome) by Skotko, Levine, and Goldstein.

Straight from the abstract on the National Institute of Health’s website:

“We analyzed valid and reliable survey instruments from 284 people with Down syndrome on the mailing lists of six non-profit Down syndrome organizations around the country.

Among those surveyed, nearly 99% of people with Down syndrome indicated that they were happy with their lives; 97% liked who they are; and 96% liked how they look. Nearly 99% people with Down syndrome expressed love for their families, and 97% liked their brothers and sisters.”

Those are the important statistics. And I challenge you to find a group of 284 typical people in which 99% report they are happy with their lives.

In many areas of my own life, I find myself searching for the elusive happiness, only to find it wrapped up in the heart of my little boy. This was even more apparent when I spent 6 days away from Kyle on vacation. Sure, I relaxed, enjoyed quiet meals, and reveled in my independence. However, I quickly realized upon returning what I had missed when I was away.

What I missed most is impossible to put into words. It is a feeling found in the quiet moments of the morning when I get my youngest boys up–when we laugh together, and when I am the object of my children’s affection. These small moments are present with all of my kids, but are admittedly amplified with Kyle. Love and affection seep out of his every pore.

Going forward, I challenge you all to read, speak, and change perceptions. Talk about Down syndrome. Talk to people with Down syndrome. Make friends with parents who have a child with Down syndrome.

If someone you know has an indication of Down syndrome during pregnancy, don’t say, “I’m sorry.” Instead, be the point person for them. Tell them about blogs you’ve read, people you know, and research you’ve heard about.

Not long ago, I read an obituary identifying a recently deceased 67-year-old man as a “Down’s individual.” The obituary went on for paragraph after paragraph, listing the people and places that were positively affected by this one individual’s life.

This is awareness: observing the inherent value of people with Down syndrome and their impact on their families and the world. And don’t stop there. Speak about that value to others who are not lucky enough to realize it.

Down syndrome awareness

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About Katie

Katie Bee is the author of for Elysium blog: a site about family, Down syndrome, home, art, and writing.

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