Down syndrome is the most common chromosomal difference in the world—nearly one out of every 700 children are born with an extra chromosome. But what are these kids' day-to-day lives like?
Hoping to show the joys, challenges, realities, and aspirations (and also bust some myths along the way), blogger and advocate Meriah Nichols—mom to a 4-year-old girl with DS—and the Down Syndrome Diagnosis Network have kicked off the interactive website, A Day in the Life with Down Syndrome. People who love someone with DS or who have DS are all welcome to share their stories and photos.
"My daughter Moxie's life is as ordinary as her family's is—just as everyone who has Down syndrome lives the 'ordinary' that their family establishes," says Nichols, who also has two boys and is married to Mikey, a professional mechanic. "I think it is important to change the perception of what a life lived with Down syndrome is like, so that we can create a cultural shift in not just being aware and accepting of Down syndrome, but of actually valuing it."
The family is currently traveling around Mexico (they "roadschool" the kids). Here, Nichols shares a day in her daughter Moxie's life.
I usually wake up early and then I tell everyone I'm awake by signing "awake!" My mommy says that I'm really warning everyone. I love eating cereal! My daddy lets me set the table and pour the cereal and milk myself. I could eat Cheerios for every meal, if they would only let me.
Today we decided to go to the river here in Ocosingo. That made me really happy because I LOVE to swim. My friends and my brothers and I built a little dam by picking up river rocks and stacking them. That was FUN.
We ate handmade doughnuts and ice-cream (my daddy said something about "Drug them with sugar and set them free!") and then we went to to the playground nearby and played.
My brother Mac and I usually help each other out on the playground by pushing each other, but sometimes my brother Micah joins us. That makes me happy. He is two years older than me, but my mommy says he was born old. He's more like 60 years old. I love Micah. Even when I boss him around or make him do things for me, I still really look up to him.
We went to the ruins close to the river, and I got to climb around Mayan ruins that were hundreds of years old. I just liked all the stairs. I love climbing!
I usually play a bit after dinner, and then my parents let me watch a show. Dora the Explorer is still my favorite, but I usually have to compromise and watch something my older brother likes, too. These days, that's usually Pinocchio.
I love washing up. I love brushing my teeth, too. When we are clean, we head over for story time. Mommy usually reads me three stories of my choice. Right now, Pete the Cat is my favorite.
Well, that's a pretty typical day in my life right now. And I think it's actually time for bed again right now. Mommy? Isn't Daddy telling you to put me to bed now?
Find more stories like this, and share your own, at A Day in the Life with Down Syndrome.
Ellen Seidman is a mom of two, editor, and professional snacker who blogs daily at Love That Max. You can find her pondering special needs parenthood and other important topics (such as what her next snack will be) on Facebook, Twitter, Pinterest, and Google+ even though she still hasn't totally figured out what that is.