Within the Down syndrome online community I’ve heard the question, “How and when should I tell my children their sibling has Down syndrome?” There isn’t a right or wrong answer, but I am proud of the way we have handled this situation for our family.
We’re a pretty open book in our house, we talk about anything and everything. It has always been important to me my children feel they can ask me anything. I want me or my husband to be who they turn to when they need advice or guidance. So when we suspected River had Down syndrome, it never even crossed my mind maybe we shouldn’t tell his brother Skyler, who was then 3 1/2 years old. Skyler is part of our team, which meant we were in this together. The serious medical conversations or worries we had happened when he was in bed.
When we sat in the doctor’s surgery and River was diagnosed at 6 months old, Skyler was right there by our side. It might surprise people because he was so young, but we didn’t see receiving the diagnosis as a terrible occasion. I’d suspected River had Down syndrome for a while and we were at peace with it. Also, we felt Skyler could understand — to an extent — what was going on.
When we explained to Skyler his brother, River, had Down syndrome and what the diagnosis meant, it was surprisingly easy. Children seem to be amazingly accepting; for Skyler, his brother having Down syndrome was not much different from the fact he also had brown eyes. It just didn’t seem to matter. We explained Down syndrome in age-appropriate ways; we talked about differences, and that River would probably learn things a bit slower than other children. I then told Skyler how important his job was as River’s big brother, how he could help him and teach him, support him and cheer him on. These are all things I watch him do; he is a wonderful big brother and I couldn’t have asked for more.
Skyler is now 5 years old and it appears Down syndrome is still not a big deal to him, “Mum, River having Down syndrome is not a big deal. But if he’d been born a girl, now that would have been a problem!” He openly asks questions and loves to talk about River and what he is achieving. He also loves hearing about other children with Down syndrome and seeing pictures online. I wonder if it’s when we start to become adults that our attitudes change. I wonder if this is when we start to focus on differences, when we become prejudiced and keep our eyes closed to anyone who might be different. Children seem to care more about someone being their family or their friends. In my opinion, when children notice differences they don’t seem to hold them as important. To me, the innocence of children is quite remarkable. I hope by being open and honest with Skyler from the beginning, he’ll carry those qualities with him as he becomes a man.
Some people might not want to mention Down syndrome until their children are older because they don’t want them to see their sibling as “different.” They want the siblings to see their brother or sister and not the diagnosis. That’s OK. For me, personally, I wanted Skyler to know about Down syndrome because it is part of who River is.
I’ve never heard Skyler refer to his brother by the diagnosis, not once. To him, River is just River.
If I had not told Skyler his brother had Down syndrome, I think he would have worked it out for himself. That is something I didn’t want to happen, along with him hearing it from someone else at school or overhearing a conversation. Kids are more aware than we give them credit for, and I wanted to be the person who had this discussion with my son.
I think it would have been difficult if we were not open about River’s diagnosis. I’m so proud of who my son is, proud he has Down syndrome and I don’t see it as a negative. This is why we talk about it in our everyday life, because it is a part of our everyday life.
I think Skyler has benefited from having River as a brother even though he is only 5 years old. I imagine he will be an amazing grown-up. He is kind, patient, loving and accepting. He really does have a big heart. He is River’s biggest supporter, always the one cheering the loudest. River loves him so much. They have a bond I hope will always be there.
I don’t believe Skyler knowing his brother has Down syndrome has had negative implications. I imagine it is our children who are going to make this world a more accepting place, a place where being different is beautiful and not something negative. Hopefully, a place where being different isn’t a big deal. In my opinion it is through our children that we can create an inclusive society where everyone is exactly who they were meant to be, exactly who they want to be.
I would encourage you to talk to your children. Have open and honest discussions and allow them to ask questions without any judgment. Teach them differences are nothing to be afraid of, and nobody is superior to anyone else due to ability, race, religion or sexuality. And I believe this is equally valid for parents who don’t have children with disabilities — talk to your children. Allow them to participate in situations where they get to hang out with people who are different from them. Teach them about equality and acceptance. Change can happen if we all do our part.
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