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How We Shared Our Daughter's Down Syndrome Diagnosis With Her Siblings

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The moment we learned our daughter was born with an extra chromosome, my mind raced in many directions.  I was particularly struck by what Down syndrome would mean in the lives of her siblings, even though at the time she had just one.  As she grew, I watched her older brother dote over her the way he would have if she did not have Down syndrome. In time my lingering concerns about the impact her diagnosis might have on him began to slip away.

Kids are innocent and often quite intelligent. They know what they are taught, and they also absorb the world that surrounds them; how they are influenced helps shape how they view things and who they will become. It is a conversation I have shared with parents just like me over the last five years. Is specifically sharing the diagnosis with siblings necessary? I really believe it is a personal choice; however, I knew early in my daughter’s life that I needed and wanted to share her diagnosis with her brother, and that I would do the same when we had more children. To me, Down syndrome was not secretive. While it is not our entire life, it does play a part in our family.

A dash of creativity teamed up with some inspiration and a tag board helped create this special moment for my family a few years ago.

My stepson was 7 when we decided to tell him, and his sister was still a baby. Questions about his baby sister became more frequent – like why she had so many therapists and doctors’ appointments, and why she could not sit or crawl like her cousins. We often shared with him that kids, especially babies, develop differently and at their own pace.  But he knew something was different. Now, nearly five years later, we found ourselves facing similar questions from our youngest about her older sister.  Their questions have always deserved honest and real answers.

We wanted to empower our children with knowledge and positivity about Down syndrome, and encourage them to celebrate what makes what makes us all different. It was really important that our kids learn about the diagnosis from their parents first; that way they could be prepared with appropriate responses to conversations that may happen in the future.  It is my sincere hope that by doing so, we are building up their confidence to advocate with their whole hearts.

That is not to say we sugar-coated anything.  Our children understand that parts of having an extra chromosome are challenging, but they have become their sister’s biggest cheerleaders. And more importantly, they never treated her differently after learning about her diagnosis.

My daughter’s siblings do not label her by her diagnosis, like I was once worried about. They have awesome relationships – typical sibling relationships that include everything from annoying one another to playing together. Tessa, who has Down syndrome, has also been able to talk about her own diagnosis with her family, which has made for some heartwarming and teachable moments in our home — like if Down syndrome ever goes away, or if our dog has it, or how come only one of us was born with it.

There is nothing I would change, and I do not regret sharing with our children all that an extra chromosome brings to our party.

Since sharing our home video project on YouTube in 2012, we were contacted to create a story that has helped parents share what Down syndrome is with children in the home, classroom or elsewhere.  47 Strings:  Tessa’s Special Code” is a children’s picture book that explains Down syndrome in a kid-friendly and positive way that is easy to understand.  A portion of the proceeds benefit the Down Syndrome Diagnosis Network, an amazing organization that supports families who have just received a new diagnosis.  

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Originally published: December 12, 2016
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