Today, as we sat in the sun, my 12 year old told me how sad she feels sometimes because people do not see her. It’s not the first time she has told me this. In fact it goes back a few years. I remember so clearly a situation where she was about 5 and Noah was 2. We were on the ferry to France and somebody spotted Noah with us, they came over to say hello to him, ask him his name, try to get some smiles out of him. As Anna stood beside him, I remember her trying to get the stranger’s attention, her little voice calling “My name is Anna” with her cute little smile but the stranger did not hear her, they were completely transfixed on Noah. I saw her face drop and a shyness descend on her that was unusual even back then.
This is something people do not tell you. As I worried in the early days about how Noah would fit in in this world, it never crossed my mind that he would be the one that is seen and his sister the one feeling isolated. Of course I have learned so much since then and it makes sense that when focusing on worries or reaching milestones with a child who has additional needs, the sibling sometimes has to take a back seat. Anna has never objected to that, in fact she is his biggest teacher and role model and is very proud of that relationship she has with her little brother.
It’s when we’re out and about that every now and then the challenge arises. We will run into people. They will look at Noah, they will ask him questions, comment on how clever or capable he is. They might watch him in a type of wonder, sometimes because they know somebody with Down Syndrome and they are reminded of that person, or other times it’s because they are surprised at how “normal” he is or different to what they expected of a child with DS. They might think he is vulnerable and therefore he will appreciate a smile or a hello and people are just interested in him. He has an inner warmth that draws out the sensitive, nurturing side in all of us. His smile is infectious and if you can get one from him it feels like a personal reward! Unfortunately in this interest, people will ignore the amazing 12 year old standing with him. She feels invisible. Nobody will ask her her name, what age she is, where she goes to school. Nobody will tell her she is a great girl for being so kind and helpful with her brother or even give her the small simple hello that she is craving just to be seen.
Of course none of this is intended or with any ill will. We are so proud of how Noah can draw this side out in people, there is so much kindness and love around him and we are so thankful to live in a community where he is loved and included in the way that he is. People are very kind to him. We all presume that the gorgeous, grown up and very capable 12 year old sister is sorted, she is not vulnerable like he is and therefore does not need the same attention. This is where we fall down and need to take note of these little superheroes. More often than not, siblings of children with special needs are themselves extra special. They are there for the tough times, they take a back seat when it’s needed, they are ready to put the needs of their brother or sister before their own. They are the teachers, role models, nurturers, best friends. They are protective tigers while learning kindness and acceptance often from a tiny age. They will do whatever is needed and not because they are asked to but because they love unconditionally just like their siblings do. They do not ask for thanks, rewards or compliments but they do deserve to be seen.
So after a gorgeous day out and about with my two soldiers, I want to take a moment to reflect on these amazing siblings. The next time you meet a very cute and vulnerable small person (in our case no longer such a small person, can’t believe Noah is 9!!), take a moment to notice the smiling tiger sibling beside them, they too are superheroes, they too are vulnerable and they will appreciate your hello!