13 years ago on 26th December 2004 we were just two kids holidaying with our parents in Sri Lanka.
13 years ago, while I was clutching onto Christos and waiting for the second tsunami wave to hit, I thought of all the things I might not be able to do. I wondered if my family knew I loved them. If we would be found. I thought of what I wanted to do, and how I would do it.
13 years later, unavoidable circumstances have led to Christos and I being on holiday in Sri Lanka alone for three days. We aren’t slumming it in the slightest. We are still staying in Amaya Lake, got a suite and all the staff doing their best to provide us will all the support we need.
It’s not the first time we’ve been alone together. I used to be in charge when our parents were at work for 3-4 hours. But we were at home. I knew who to call; I knew what needed to be done in case of an emergency; our parents worked 15 minutes away and our grandparents lived 30 minutes away. For the last three days we have been a 3 hour drive away from dad and 5,644km away from any kind of family. No back up. And when I say no back up, I mean no back up that can take over from me with Christos. I’m the only one who knows how to make his food, what he says, what he drinks, his schedule, his expressions, his mood, how he likes his clothes, socks, showers. I’m the only one he can depend on for 3 days. I haven’t found a word that describes what it feels like yet.
In 2004 Christos was 6. He had not started speaking yet and we communicated with PECS. We had a bag packed with only his food. There was his gluten free pasta, halloumi, lemons, rice, a burner and his salt and vinegar Lays crisps. Remember, this was 2004, in a village in a third world country in the midst of a civil war. No smartphones, no internet, no roaming, no YouTube, no Lays.
Despite my stomach ache, insomnia and the permanent look of panic on my face, the three days have been a breeze. It may not sound like a long time and you might be thinking that I’m being a martyr. I assure you, I tell myself to (wo)man up constantly. We have been following a schedule for the last 11 days, and we have not deviated from it much, unless necessary. My only job is to make sure we stay on schedule.
And that nothing happens to me.
Or him. But mostly to make sure we are on schedule.
The boy who couldn’t speak or understand why we were rushing him out of the house and disrupting his schedule has been replaced by a giant who follows instructions, communicates clearly with me about what he wants and understands that he needs to behave for me. We even went to a gala dinner together! He has enchanted the staff and the other guests. He is aware that I am alone and that I need to be taken care of as well. I know he knows because I occasionally get a kiss I don’t ask for or he looks back and holds my hand. My baby brother has grown into a beautiful human and that is all I want for Christmas for the rest of my life.
Some of the difficulties we have faced these last three days include:
– Having to check the time constantly to make sure we are on time. He does this on my phone approximately every 5/7 minutes.
– Always taking the same route to the same places. I tried to vary our walks slightly and had to deal with a tantrum because of it. He adapted quickly after a stern talking to and threats to call mum.
– Constant reassurance that we are keeping to schedule. He repeats the schedule to me constantly and I have to confirm it every time, with a smile and a kiss. Even as i write this he is telling me that he will be listening to music at 17.20 at volume 50.
– Brushing teeth. I have to count to 60 so that he brushes his teeth properly.
– Exercise. I’ve only been able to convince him to take a walk with me once in the 3 days we have been here. But at least we did it!
– Stimming and echolalia in a crowded restaurant. His arm flapping and laughter or repetition turns heads but everyone has been very helpful and understanding so far.
– The volume. Of the TV, the laptop, the game boy, his voice. It’s a constant negotiation of numbers and compromise. I am amazed at how willing he is to cooperate.
On this day, 13 years later, I am content that my family knows I adore them. I am assured
that whatever happens I have people in my life that will always find me. I set goals and I have accomplished most. I’ve done most of what I wanted to do and I have plans for the things I haven’t been able to do yet.
Yesterday was all about self-indulgence, presents and personal happiness. Today is about remembering and honouring the 220,000 who didn’t get the chance to do what they wanted by living out our own lives to the fullest.
No doubt our visit to Sri Lanka has been impactful. Everyone in our vicinity has been touched by autism. Everyone has learned something new. I hope this means that the next autism family to visit Amaya Lake will be in for a treat!
Be kind. Share the love.