Christos doesn’t wait for Christmas. However, he knows that on the 1st of December mum will decorate the tree. He will ask for the lights to be switched on and he will have his tea and dinner next to it, watching it, every night. Christos doesn’t understand the concept of Santa Claus, we can’t explain to him that a jolly man with a belly full of jelly comes over at night and leaves presents. Christos doesn’t expect presents, he doesn’t write a wish list, and he doesn’t get excited on Christmas morning.
When I think of Christmas I think of Sri Lanka. We spent almost every Christmas there from when I turned one year old on the airplane trip there, up until I was 18.
I think of 2004, when I was holding onto Christo, while my parents were frantically trying to grab whatever they could from our house in Sri Lanka, because the second tsunami wave was coming. Christo and I had woken up that morning to a rattle, our parents were at church. I remember thinking that I was powerless and I wouldn’t be able to save him.
I think back to Christmas in 2001 when it first crossed our minds that Christos might have autism. We were in the Maldives for a few days before going to Sri Lanka for Christmas. I remember the buffets, feeding the fish, running around the island without a worry in the world, not realising how lucky I was to be spending Christmas with family at such a beautiful place. The only vivid memory I have of Christos is how much he loved to play with the sand. There were little pots of water outside every bungalow to wash the sand off your feet, except ours was full of sand. Christo would sit for hours and just pour sand in the bowl of water. He’d use his little red shovel to pick it up and throw it in. Whether we were having tea or hanging out around our tiny plastic Christmas tree Christos would be enjoying himself that way. It was the repetition and something my auntie had read that brought up autism. A year later we were spending Christmas as an autism family.
Christmas, for me, is the time of year I think of Christos. I think of all our Christmases together and all the Christmas mornings we have spent apart. Of course, I speak to him and he’ll say Merry Christmas, give me lots of Skype kisses and then he will ask mum to hang up because it’s time for him to sit down at the top of the table, have his lunch and go upstairs to play with his game boy.
It’s been 15 years since that sandy holiday in the Maldives, the one that changed our lives forever. I think of the chaos that ensued after the diagnosis, and how we fell apart. I think of him now and I still see that little boy, in his yellow pampers scooping up all the sand on the island, but that little boy is all grown up. He has grown into himself, he has humour, character and an untameable spirit. Autism is not a pandemonium-spreading ‘disease’ anymore. We are finally at a point in time where we have got a hold on it, so much so that we are moving forward, launching projects, initiatives, giving opportunities, raising awareness. We can look ahead to Christmases where people won’t stare at supermarkets or toy stores because many of the big name brands are introducing ‘autism hours’ and adjusting their facilities to accomodate us. We have proved that with correctly adjusted supervision, thousands of hours of hard work, repetition, routine, and cooperation we get to create remarkable humans.
2016 was a tough year; I relocated and there were terrorist attacks. But in this year my brother also turned 18, and the whole world contributed to welcoming him to adulthood. I graduated and I am one step closer to being the person I want to be for him.
This Christmas, like every Christmas for the last 15 years, my wish list will consist of one wish: that the world opens up to autism. My brother’s wish list will be to keep to his routine. Only when it comes to food does Christos ever ask us to buy him something. He used to ask for anything that had Toy Story or Super Mario on it, and because it was such a rare occurrence we would rush to buy it for him. When we were in Disneyland, he would point at toys, I'd run over and pick it up to buy and he would grab my hand and ask me to return it. He didn't want it, he didn't need it; he just wanted me to look at that toy from Toy Story, he wanted to tell me who the character was, he wanted me to be as excited to see it as he was. It's difficult to buy Christos presents because he doesn't need anything and he never asks for anything either. I used to buy him packs of DVDs, which he would hide for years, or games for his Game Boy which he probably hasn't played since I bought them. He gets so excited about it that he hides it in order to control the situation, he doesn’t forget about it, he just stores it until he is ready for it. So, now I buy him clothes because I know he'll wear those (sometimes).
Christos doesn't write to Santa, he doesn't get a new phone, or the latest game; he doesn't want it. All he wants is the meal. The one where all of our insanely loud family sits around the table and eats until there is nowhere else to put food except tupperware to take home. The one where my grandpa will say 'Christo, cheers' to him a million times and Christo will clink his glass a million and one times, because it’s Christmas and he knows that's what we do on Christmas. He loves having people over - because of the food, but also because he loves having our family around. He loves the people he spends Christmas with and isn't that what Christmas is all about? Loving your people.
He's learned to adapt to these exaggerated surroundings for Christmas. Yes, his sensory sensitivity must go through the roof with the colours, the lights, the shouting, the food, the singing, the sheer madness - but he loves it. He waits for it. He knows that that's what we do, that's who we are and he accepts it. He doesn't want to be alone, or left out, or locked in his room. He wants to be alone with us - that's his gift to us.
Christmas brings back a lot of memories for me, good and bad, memories that I never want to forget. My wish this Christmas is that you will help a struggling family in the supermarket; you will appreciate how lucky you are; you will teach your kid to include their classmates on the spectrum in their party invites, or Christmas card lists; you will sit with a person on the spectrum or one of their family members and just listen.
You can change people’s lives every day with little effort; a smile, a nod, a card, an invite or even just reading about a disability. Every person you meet is fighting their own battle, don’t close yourself off, don’t shut the world out because we need to make it a better place for your children, for our children, for the children who depend on our help. Let our legacy be kindness and inclusivity.
Merry Christmas world.
Dora grew up in Cyprus and is half Sri Lankan. She is a law graduate from Lancaster University and the University of Kent. In her spare time, she researches and writes an autism blog about her brother (christos90.wordpress.com). She is an aspiring human rights lawyer and hopes to help make a difference for people with disabilities in the future.