Down Syndrome Awareness Q&A: Sharing a Special Needs Diagnosis with Siblings.

How did you explain to Owen that she is different but should be treated the same? Did he instantly just get it?

When Rory was born, our oldest child was three. Having our second was motivated by our first. We wanted to gift him a sibling, someone to share life with and a common history with. Someone who’d be there when we were gone. So, when Rory arrived with Down Syndrome, we naturally felt our efforts were in vain. Our feelings have evolved since but, at the time a  future of caretaking filled my mind. Granted, the day Rory was born, there were many unknowns. Would her heart heal, would she be sick or unable to walk? Would she be able to talk someday? What would be her level of independence? 

All this and more flooded our minds while in the hospital. One thing I knew for sure was that, how we framed the experience would be the story Owen would tell himself for years to come.  We wanted him to know Rory was his little baby sister. That he could love her and grow beside her without any of the unpredictable futures we had conjured in our minds. For two and half years, we never formally introduced his sister with a diagnosis. We discussed Down Syndrome frequently, he was a part of therapy, and was exposed to many families with little ones carrying an extra chromosome. It never really was a “thing” for him. We’ve held Rory to the same standards. 

One evening when he was five, we were working on some testimonies for the Glory Days. A mother sent a video recording of her experience using a planner and stated it was created by a mom whose child has Down syndrome. Owen was with me and said, “What? You created the planner, so I have Down Syndrome?” I said, “No.” and he said “Good!” This was my opening. A conversation started by him vs a bomb to be dropped. I asked him why his response was, “Good” and he’s said “Because I don’t want to be sick and have something bad happen.” I explained what Down syndrome was and wasn’t. I explained how people with Down Syndrome live good lives and we shouldn’t be afraid of a diagnosis. We should get to know the person. I left it at that. 

Over the coming months, we would talk about all types of special needs, disorders, and illnesses that may lead some to live a life differently than him and myself. I would share posts of differently abled kids and adults commenting on their life not the disability. I was trying to build a habit in him of seeing the person first.  If he noticed a feeding tube, wheelchair or different features and asked me questions I would answer them or we would look up information on the disorder or disability being represented.

 The following October, Rory had started school. Her teacher kindly asked to celebrate Down Syndrome Awareness Month. With Owen and Rory at the same school, we felt it was time to explain his sister carried an extra chromosome. My biggest fear in delaying our conversation was someone delivering the news in an unkind way. For a bedtime book one an evening that month, we read 24 Strings. It’s about a little sister. When she arrived, she had an extra chromosome. It explains all the things that come along with having Down Syndrome along with all the things Tess can do regardless of her genetics. 

After reading the book, we shared that Rory also had an extra chromosome like Tess. We paused and waited for questions. Owen’s response was surprising. He didn’t miss a beat and said, “Well, what does it matter? She’s the cutest little sister.” He continued to list off all the things he loved about her. He pointed out all the things that made them siblings and undeniably connected. If Evan and I have done anything right in our journey, it was this. Allowing him the gift of meeting her before meeting her diagnosis. Allowing bonds to form, equality to be the norm, and fear to be eliminated by his love for her. It’s the gift we weren’t given on the day she was born. It was healing to offer it to him.

If I can offer any new families advice it would be this. Slow down. The need to label and imagine a future can feel heavy. Let me tell you, ripping that bandaid off wrong will leave lasting harm. If it be how you share the news with a sibling, extended family or your community. I know as the person experiencing the shock it can be hard to temper yourself. So, breathe. Pull back the layers slowly and intentionally. Allow your child to unfold and show you what their story will look like before you prematurely tell it for them. We are all made with differences. And that loss I felt Owen was going to experience in his life, it was a false assumption. He is so much better off with Rory as his sister. Compassion, Understanding and Leadership are just the tip of the iceberg. His character is elevated daily. He has wisdom beyond his years. She's called us all higher. We're better for her arrival.

For more on how to share a diagnosis with friends and family you can read this post.