Down syndrome

Mothers/Inclusion Advocates Say Down Syndrome Awareness Month is for Everyone

October is Down Syndrome Awareness Month. An estimated 1 in 700 babies in the U.S. is born with Down Syndrome.

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When 7-year-old Ellie Drago goes to her home school co-op in Lake Highlands, she sits in the same class with a dozen other kids who are about her age, but Ellie is unique. She has Down Syndrome.

"What I love in a class like this with other typical children," Ellie's mom Nikki Drago said. "I get to see, wow, she is getting this! She is getting it just like all those other kids are."

Drago says inclusion is important, not just for Ellie, but for the other children and their parents as well.

"I think they're also learning that, 'hey, she is a lot like me,'" Drago said. "And I think more alike than different is a good thing for them to see as well."

The need for inclusion and being seen are through lines in a new book released this month, Down Syndrome Awareness Month, titled 'Beside You'.

NBC 5’s Noelle Walker talks to new author Kimberly Berg Sanders about her book ‘Beside You’ meant to shine a light on the hope and isolation Down syndrome families experience.

"I notice that a lot of our kids are relegated to corners and in the shadows," inclusion advocate and 'Beside You' author Kimberly Berg Sanders said. "I just wanted them to be seen."

On a personal note, I know Sanders simply as 'Kimmie'. We've been friends since we were young children. I first met her son Lukas, who has Down Syndrome, shortly after he was born.

"There was so much joy and so many people gathered around," Sanders recalled. "And then that news was instant fear."

Sanders said fear cycles through every now and again, but there is joy in learning to live in the moment.

"I think children with Down Syndrome are really walking life at a very different pace," Sanders said. "There's a sweet contentment we can learn from our children."

Sanders said Down Syndrome families can often feel isolated. Drago agreed, pointing out inclusion is a two-way street.

"I think that it can be isolating for a family because when we do choose to put ourselves in a more typical situation we have to do so with extra care," Drago said. "If they're choosing to show up, draw them in."

Sanders hopes her book shines a light and gives families like hers hope.

"Hope. Always hope. I think hope can elude us in those darker moments, and I want them to feel like they belong, like there's a place for you," Sanders said. "We just have to decide to be intentional about it."

Both Sanders and Drago will attend the Labeled and Loved Retreat for moms with special needs children in San Antonio this weekend.

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