What 7 Years of Down Syndrome Awareness Months Have Taught Me


I still remember it…my first Down Syndrome Awareness Month.

I was so full of hope, excitement, joy, and pride. I couldn’t wait to post all the facts about Down syndrome, dispel myths, and shout the worth of all these superheroes in the Down syndrome community. I couldn’t wait to blow everyone’s minds about how people with Down syndrome all over the world were defying expectations. I was so quick to hit share when I saw people with Down syndrome starting their own businesses, going away to college, or swimming the English Channel.

With every click, I dreamt of what expectations my boy would defy. I imagined him driving, giving speeches to rooms filled with spectators, and showing me his acceptance letters. I cried with joy as I realized how wrong everyone was about Down syndrome.

As the years went by, the milestones grew farther and farther apart.

Every October, I found myself less enthusiastic about sharing the success stories as my beautiful baby boy struggled to meet basic developmental steps.

I struggled in his fourth year as other moms were sharing videos of their four-year-olds running races in the Special Olympics, and my son had just learned to crawl.

I struggled in his fifth year as other parents were sharing their childrens’ first day of Kindergarten pics, boasting their pride as they were going into fully-inclusive classrooms. I struggled watching their childrens’ beautiful videos talking about their first day of school, and I had yet to hear my boy’s voice.

I found myself no longer sharing things that October, wondering if we were still allowed to partake, especially now that the dual-diagnosis of non-verbal Autism was official.

By his sixth year I completely exempted myself from the festivities.

Here we are in our seventh year, and I am back.

I am back stronger than ever, because once again, my son has taught me something about life. I am here this year, in 2020, in our seventh year on this journey, to shout the worth of Down syndrome in a way it took me seven years to understand.

Down syndrome awareness is not just about the success stories.

Down syndrome awareness is not intended to make the world believe everyone with an extra chromosome will speak to Congress one day.

Down syndrome awareness is meant to make the world aware that individuals with Down syndrome are WORTHY!

Their worth is not defined by their ability, by their IQ. Their worth is not defined by how many expectations they exceed, or milestones they surpass. Their worth is not defined by their extra chromosome and what effect it does or does not have on them developmentally.

During this Down Syndrome Awareness Month, I bring awareness for ALL individuals with Down syndrome.

This month, I would like to shout the worth of my son. He doesn’t like crowded dance parties, he doesn’t speak, he most likely won’t graduate with honors from a major university, and he is perfect exactly the way he is.

Click here to read more on Down syndrome from Jamie, or start with The Spectrum of Down Syndrome. To chat with other moms and find support in the area, please join our Special Needs Moms group on Facebook.

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Jamie is a Dearborn girl born and raised, but recently moved to New Baltimore. Her husband Mark and her have two perfect kiddos. Benny, born in 2013, and Ellie, born in 2016, are full of giggles and joy! Jamie works full-time from home designing virtual classrooms and curriculum for a technology company, and Mark is a stay at home dad. After Benny was born, Jamie became an advocate for the Down syndrome community. She is a National Down Syndrome Society Ambassador for the State of Michigan, and is the President of her 501(c)3 non-profit, The Down Syndrome Diary. This organization sends diaries around the world bringing together families whom have had a baby born with Down syndrome. The diaries are meant to provide support to these families as well as be a resource to new parents just receiving a diagnosis. You can find Jamie's voice on The Mighty, an online site supporting the special needs community, as well as on her own blog and social media pages.


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