Quite often within the Down syndrome online community I hear the question, “how and when should I tell my children that their sibling has Down syndrome?”
I guess there isn’t a right or wrong answer, and in no way is what I write here judgmental or preachy in any way. I know some families think it is better to wait until their children are older or until they ask, and that is completely their decision. I don’t claim to know what is best for other people’s families, nor do I claim that my way is the best way for everyone else. But I am proud of the way we have handled that situation, and if another person who is feeling confused can get some peace of mind from reading this then fantastic.
So we’re a pretty open book in our house, we can talk about anything and everything. It has always been really important to me that my children can come to me and ask me anything, and that me or my husband are who they turn to when they need advice or guidance. So when we suspected that River had Down syndrome, it never even crossed my mind that maybe we shouldn’t tell Skyler who was then 3 and a half.
He is part of our team and that meant we were in it together. Obviously any serious medical or worrying conversations were held when he was in bed, but for we were positive and he was right there. And 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 with him being so young, but to be honest we just didn’t see it as a terrible occasion. I’d suspected it for a while and we were very much at peace with the fact that our son had Down syndrome. Also, Skyler is a pretty grown up little guy. He was extremely lazy in his milestones, but pretty clued up in his mind and I never doubted that he understood what was going on (to an extent of course).
Explaining River had Down Syndrome was surprising easy
When we explained to Skyler that River had Down syndrome and what it meant, it was actually surprisingly easy. Children are so amazingly accepting, and Ds were as big a deal to Skyler as the fact that River had brown eyes. It just didn’t matter. We age appropriately explained to him about differences, about Ds and the fact that River would learn things a bit slower than other children. I then told him how important his job was as River’s big bro, to help him and teach him, support him and cheer him on. All duties that he has never failed to achieve, he is a wonderful big brother and I couldn’t have asked for more. To be quite honest, Skyler is 5 now and Ds is still not a big deal to him.
He openly asks questions, and loves to talk about River and what he is achieving. He also loves me telling him about other children with Ds and what they’ve achieved, and seeing pictures online of all the other beautiful children with Ds. IT’s when we start to become adults that our attitudes start to change. That we start to see differences, become prejudiced and keep our eyes closed to anyone who might not be the same as us. Children don’t see differences; they only see their family and their friends. And if they do notice differences, they just aren’t important. The innocence of children is quite remarkable and I really hope that by being open and honest with Skyler from the beginning, that he’ll carry those qualities with him as he becomes a man.
Skyler doesn’t see his brother’s diagnosis
I’ve seen it said that people have decided not to mention it until their children are older, because for as long as possible they don’t want them to see their sibling as ‘different’. They want them to see their brother or sister and not the diagnosis. For me personally, I wanted Skyler to grow up really knowing his brother and Down syndrome is part of who River is.
Another thing that made me a bit uncomfortable with that route, is why is being different such a bad thing? Why do we need to hide it away and not talk about it until our children are older? Surely I can’t expect Skyler to grow up to accept and embrace differences, when I’m hiding his own brothers away? And on the same note, not once has Skyler referred to his brother as “River with Ds, not once. He doesn’t see his brother’s diagnosis; he just knows that he has it. To him, River is just River.
If I had decided to not tell Skyler at such a young age, I’m not sure how he wouldn’t have worked it out for himself. And that is something I really didn’t want to happen, along with him hearing it from someone else at school or overhearing a conversation. Kids are so much more aware than we give them credit for, and I wanted to be the person who had this discussion with my son.
How would my husband and I ever talk about it? How would I ever be able to have conversations with family or friends when Skyler was around? Would I have to wait for Skyler to be in bed, or for him to leave the room? Or whisper behind my hand, lowering my voice knowing damn well that he knew we had a secret. How would explain therapies, doctor’s appointments or the fact that River has delays. These kinds of secrets were just not an option for us, and it just doesn’t sit right. I’m so proud of the fact that River is River, I’m proud of the fact that he has Down syndrome and I don’t see it as a negative in anyway. So why not talk about it in everyday life, as it is very much a part of our everyday life.
I think Skyler has really benefitted from having River as a brother, and even though he is only 5 I can see he is going to 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, and as he understands how hard River has to work to reach a milestone, he is always the one cheering the loudest. And River loves him back in return so, so much. They have a bond that I hope will always be there.
I actually don’t think Skyler knowing about River having Ds has had any negative implications at all, only positive. Like I said earlier, I think issues are with us adults alone. To be honest, I think as adults we make way more of an issue out of these things than necessary and in reality our children are more than capable of dealing with something that is actually quite simple. It is our children who are going to be able to make this world a more accepting place, a place where being different is beautiful and not something negative. Actually, a place where being different just isn’t a big deal! It is through our children that we can create an inclusive society, where everyone is just happily allowed to be exactly who they were meant to be, exactly who they want to be.
Teach equality and acceptance
So talk to your children, have open and honest discussions and allow them to ask any questions without judgement. Teach them that differences are nothing to be afraid of, that nobody is superior to anyone else due to ability, race, religion or sexuality. And that is equally so for parents who don’t have children with special needs, talk to your children. Put them in situations where they get to hang out with people who are different to them, teach them about equality and acceptance. It is only through our children that change will ever happen, so just do your part.
So now I will leave you with a quote from a 5 year old awesome little boy, just to weigh up how big a deal Down syndrome is 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!”