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The Sri Lanka Diaries: 13 years later

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.

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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

img_8423-2 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.

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Autism Every Day Part 2

Autism Every Day

Following on from that minefield. The mothers speak of how marriage falls apart because of Autism. I think autism makes families stronger. I believe that we are stronger, more in-tune with each other because of autism. If a marriage fails, it’s not because of autism. When you live with it you go through the exact same thing, together. Autism doesn’t cause divorce. Yes, there is pressure, anger, constant fear and you are changed as people for the rest of your lives but blaming autism for your marriage falling apart is like blaming the door when you run into it. The door is there, its constant you just have to work around it, through it. I’m not saying there isn’t a link but to call it a direct cause for divorce is not something I would condone.

Irony: my parents are separated. Not because of my brother, not because of anything to do with my brother. In fact, autism is the only thing they will stand united for, for ever. I admire them for that, because even in their separation they would stand together for him, and there is nothing greater than that.

Up All Night: Says it all. All I can suggest is a schedule, with times and dates. Each hour has the activity they should be doing. Chris loves his programme, it keeps him calm. Every night his programme says he’s going to bed at 9pm, even if he doesn’t sleep until 12pm, he will still go to bed at 9pm. A programme (with pictures if it helps your kid better) will make their lives so much easier. It gives them structure, a routine a place of reference when they get upset. Use hours of the day, or just set it out on a line. Use pictures of activities (as mentioned in previous post) to make a timeline for them of their day. Make sure you point out each activity when its time to do it and take it down when its done. It might be hard at first, but in the long run it will benefit them. Of course, there are times when the programme is the source of the tantrum; if you change something on it, if the time comes and you’re not doing the activity.

Dreams Deferred:

It’s not wrong to admit that it took you a while to let the life you had before go. No, because it was your life and your routine and its gone. We’re quite lucky because Chris started travelling with us at a very young age. So, it became part of his life very early on before he was diagnosed. He loves the process, he loves the plane, the airports. He’s an angel; definitely not always but 2/10 he is an angel – and those two make it all worth it. But that’s not the case with all autistic children. No two children in the spectrum, in the world, are the same. For the siblings I think its different. For me, it made me have dreams, it made me want to go out there and catch my dreams and make them true. It gave my life a purpose so strong, so meaningful. I can sympathise with parents who give up dreams for their children, its not wrong to say it out loud because at the end of the day you made the right choice.

It might be odd, but I don’t worry about him not getting married, or having children. It saddens me that he won’t experience love in that way but I think they experience it in different ways and depth. There are moments when he comes out of his own galaxy and orbit needing your affection and its beautiful. He’s very loving with us – hugs, kisses, cheekiness, sympathy when we’re angry at something, empathy when we cry – he has the ability to share these emotions with us, he just has to choose when. And who’s to say that there won’t be a stunning new treatment in the next decade that will enable us to get closer to them? It doesn’t scare me that he probably won’t have a friend. I know that if he wanted one, he would get himself one. He would want to go play with them – like he does sometimes – he would want to watch movies with them, or engage in their activities – like he does when he wants to. It doesn’t scare me because he’s happy doing solitary things, and he’s happy doing group things – when he wants to. It doesn’t scare me because I can embrace who he is, just the way he is. Just because marriage is considered by society to be a ‘norm’ doesn’t mean everyone should do it in order for their lives to be complete.

Don’t be sad because you, maybe, won’t be able to dance with your kids on their wedding day. Be glad that you can dance with your kids every day.

No Surrender:

Some of the comments read that the video presents autism as something unbearable, as the parents complaining about their lives. If you live with autism and say you’ve never complained – you’re lying. Everyone is allowed to complain. Everyone is allowed to get off that horse, have a little walk around as long as you ALWAYS get back up on that horse. There is no surrender, this is our life. Everything we do is autism, everything we spend, every step we take is autism. It’s not weak to complain, or reminisce or say out loud how hard it is. It’s healing, and it doesn’t make you a bad parent. Further to this, like I’ve said before, no two children on the spectrum are the same, which means that no video, documentary will ever be able to please everyone. They need to take individual cases, they need to tell their stories; just like you need to tell yours. So, share your story and make people aware.

Autism isn’t all stress and sleepless nights. The first time they say a word, the first time they do a small thing they’ve been working on for months, the unexpected affection, the indescribable feeling of passion and power they give our lives are more than enough to keep you going forever. But we are raising awareness; so be as honest as possible.

Don’t focus on one video, one woman’s thought. Learn about Autism, educate yourselves.