Mothers / Inclusion Advocates Say Down Syndrome Awareness Month Is For Everyone – NBC 5 Dallas-Fort Worth


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

“What I love about a class like this with other typical kids,” said Ellie’s mom, Nikki Drago. “I can see, wow, she understands that! She understands like all other children.”

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

“I think they also learn that ‘hey, she looks a lot like me,’” Draco said. “And I think more similar than different is a good thing for them to see, too.”

The need to be included and to be seen is reflected in the lines of a new book published this month, Down Syndrome Awareness Month, titled ‘By your side’.

NBC 5’s Noelle Walker speaks with new author Kimberly Berg Sanders about her book “Beside You” intended to highlight the hope and isolation that families with Down’s syndrome experience.

“I notice a lot of our kids are being relegated to the corners and the shadows,” said Kimberly Berg Sanders, advocate for inclusion and author of “Beside You.” “I just wanted them to be seen.”

On a personal note, I know Sanders simply as “Kimmie”. We have been friends from a young age. I first met her son Lukas, who has Down syndrome, shortly after he was born.

“There was so much joy and so many people came together,” Sanders recalls. “And then this news was an instant fear.”

Sanders said the fear returns from time to time, but there is joy in learning to live in the moment.

“I think kids with Down syndrome really live at a very different pace,” Sanders said. “There is a sweet contentment that we can learn from our children.”

Sanders said families with Down’s syndrome can often feel isolated. Drago agreed, pointing out that inclusion is a two-way street.

“I think it can be isolating for a family because when we choose to put ourselves in a more typical situation, we have to do it with extra caution,” Drago said. “If they choose to show up, attract them.”

Sanders hopes his book enlightens and gives hope to families like his.

“Hope. Always hope. I think hope can slip away from us in these darker times, and I want them to feel out of place, like there’s a place for you,” Sanders said. “We just have to decide to be intentional about it.”

Sanders and Drago will attend the Labeled and loved retreat for moms with special needs kids in San Antonio this weekend.

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