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Bru-mance

On 4th January 2016 I relocated to Brussels on a 3 month secondment. In those 3 months I made lifelong friends, we had lols for days, hangovers, a detox diet, so much pizza, I gained 10 kilos, launched an autism awareness project, took LPC exams and witnessed a terrorist attack.

I fell in love with Brussels because it’s such a weird place. You can find anything you want but it is organised chaos. You only have to walk around for 20 minutes and you are bound to go through european, residential, touristy, historic parts of the city. It’s a small town playing dress up as a big city.

On 22nd March 2016 I went to work super early because there was a lot going on. It wasn’t until 9am that I sat down, switched on my PC and looked at my phone which kept getting messaged and missed calls that a colleague said to me – there’s been an explosion at the airport. We knew a group of people from our institution that were travelling that day so we immediately began trying to contact them. It wasn’t until the second explosion hit the news that I stopped and thought that this was something I should worry about. We had colleagues stuck on trains and being diverted, colleagues trying to come back and others trying to leave because they had to get to their children. Our building was in lock down and we had to do inventory to figure out if we would be okay to stay the night. When we were finally allowed to leave, we walked through the city to our neighbourhood, it was such a sunny day. Three days of mourning followed.

I wasn’t scared that day. I couldn’t be scared because we were burdened with so much responsibility. In the weeks that followed, we retold the day’s events so many times and I always remember not being scared. I credit this to that one colleague who was my rock that day, and who stayed late with me when I offered to walk people home. I was scared that afternoon when I had to go buy enough supplies to get me through the next few days. I was scared when I locked the door to my flat and I was alone. For the next few days, every time I heard a police siren I checked the news. Two days after the attack a friend called to say there’s a march and we should go.

The Bourse was overflowing with people, flowers, candles, song, laughter and life.

I love Brussels because there’s surprise at every corner; you never know if the car will stop at the zebra crossing, or what kind of amazing cuisine you’ll uncover during a stroll.   love Brussels because their landmark is a small bronze sculpture of a naked boy urinating.

I love Brussels because it was were I started my autism awareness project for Christos’ 18 birthday (#Project324). It was from there that I asked the team if they wanted to be part of the project, it was there that the cards were printed, cut and mailed to 18 countries. I am so proud that my brother’s 18th birthday project is associated with the city of Brussels.

In a short 3 months, I loved, I lived, I drank, I ate, I campaigned, I advocated, I worked, I helped, I was scared, I was angry, I lolled, I studied, I cried, I learned, I got a pink elephant hat. Most importantly, I was inspired. On this day, two years ago 32 people died, hundreds were injured and millions were inspired. Millions around the world were inspired by the fearlessness of humans.

#jesuisbruxelles

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The Sri Lanka Diaries: Proud Pereras

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Being back to life without Christos is harder than I thought.  The first couple of nights I kept waking up at 4.30 looking for him. This holiday was different because we depended on each other. Whatever he needed, I was the one he would come to. No back ups, no saying ‘yeah later’ and then never getting round to it. It was a surreal glimpse into our future.

I’ve written about the challenging parts of the holiday, now it’s time to go back to gushing over how great he is.

1. His routine: Christos works out his day in hours. So in the evenings, we would set out a plan for the next day hour by hour. For example:

  • 7.30 tea
  • 8am walk
  • 9am toast with jam and cheese (maybe chicken sausages)
  • 10am tennis/badminton
  • 11am go to the pool
  • 12.30pm shower
  • 1pm lunch (pasta with chicken or rice and curry)
  • 2pm game boy/or laptop (Shrek or The Road to El Dorado)
  • 3pm pool
  • 4.30pm shower
  • 5.20pm listen to music
  • 6pm tea/chocolate/fruit
  • 7pm listen to music
  • 8pm dinner (pasta with chicken or rice and curry)
  • 9pm bedtime

This wasn’t as rigid as it looks. For example, I could negotiate an extra half hour at the pool if he was in a good mood. Or we would skip the walk or the pool if it was raining. The night of the christmas gala dinner we stayed at the restaurant until 10.30pm! Also, if we were travelling the schedule looked different. He even let me explain to him how there are different times in different countries.

IMAGINE, trying to explain time zones to someone with onlyimg_8364 numbers and the words – dad, mum, Christos + Theodora, airplane, and (obviously) pasta.  I showed him the time in Colombo (dad), Doha (Christos + Theodora), Cyprus (mum) and explained that the airplane would take off and land in between. I wasn’t sure he got it, until we got to Doha and he asked me to change the time on my phone to the local time and did the same in Cyprus. I CAN’T EVEN.

 

2. His food: I’ve talked extensively about his eating habits on the blog and how far he has come from the days when mum had to pack a bunsen burner to take to the Maldives. He ate all sorts of chicken, and all sorts of rice and all sorts of pasta and sauces. He had a variety of options and made his mind up quite quickly. It didn’t bother him that it wasn’t always the same rice, and he never went for white. It didn’t bother him that the chicken was curry, or jamaican, or spicy, or salty, or lemony. He ate what was there, what caught his eye and was willing to switch in between. The chefs were on standby to make him something special, but we never needed to. In fact, all the staff were at his beck and call. I am so grateful to all the great people at Amaya Lake for their kindness; I wrote a review for them here.

3. Packing: He is the best at packing. I’m okay at packing – dad is not great (sorry daddy). Every time I lost something, Christos knew where it was. Every time I was packing he would bring me things I would have DEFINITELY forgotten. He is in his element – bossing us around and organising. Thanks to him, we went back home with all the things we had taken with us.

4. Compassion: While in Sri Lanka my aunty had a bad fall and had to be operated on. When we got to the house it was 5-6pm and Christos had warned me that he wanted chicken nuggets that night for dinner at 8pm. But: Which ones? Breadcrumbs or batter? Smooth or bitty? SPICY OR REGULAR? Or maybe a little img_8415bit spicy? Point is, it wouldn’t be the chicken nuggets he’s thinking of. I obviously always say okay and figure out the rest later. When we got there, it was obvious that we needed to make sure our aunty was okay first. Dad was mega stressed and there were millions of things he had to sort out and think about. Nuggets were not a priority. Christos played with his game boy from 5pm to 8pm that day. Why? Because he knew something was off. He knew the schedule was off. He didn’t ask to listen to music, or anything. He just played his game boy and stayed out of our way. We had pasta that night for dinner and it was okay. That was our proudest moment of the whole trip.

5: Affection: He was constantly holding my hand, giving me kisses, looking out for me. When I had a tummy ache, when I had a headache, when I was stressed – he was there for me. It was hard going back to Cyprus because his priorities changed. He was home. That meant he had our mum and nan who take care of him every day, all day. He didn’t need me anymore. Kisses were rushed, and cuddles were cut back to only when necessary. It really, really hurt. But! Let’s be real, he sees me 10 days a year. At the end of the day, I was only there for him for 13 days so obviously I’m not number one. I’m probably top 5. I hope I’m top 5.

This holiday meant so much to the three of us. There’s so much I’d like to tell you, but I can’t express it in words. This holiday was a feeling. When I think back to those 13 days, I feel a weight on my chest, it makes me cry, it makes me grin ear to ear and it makes me proud.

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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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Atypical:

Just binge-watched the much anticipated Netflix Original series ‘Atypical‘. The series follows Sam, who is on the Autism Spectrum, on his journey to finding love.

Even though its sold as a comedy, the show made me ugly-cry a lot more than it made me laugh out loud. The show presented many big and small moments that I have experienced first hand. The autistic lead is sincere and very well portrayed. You can see the extensive research that went into developing the ‘Sam’ character and he delivers quite well, in my opinion. Obviously, not everyone on the spectrum is like Sam, but I think this series is more about the family rather than the lead.

I can’t think of anything I disliked about the show, although you’ll hear a lot of self-proclaimed experts throwing shade at every opportunity. To them I say, appreciate the effort of incorporating an autism story into something as mainstream as Netflix. To you I say, watch it. Remember, not every person on the spectrum is like Sam, but this is a good starting point.

What was the inspiration for the story?
Robia Rashid says: “After working in network TV for a while, I just wanted to do something for myself. I was very aware that more people were being diagnosed with autism, and it was interesting to me that a whole generation of kids were growing up knowing that they were on the spectrum and wanting independence. That point of view seemed so interesting to me — and such a cool way to tell a dating story. You’ve seen the story of somebody looking for independence and looking for love before, but not from that specific point of view. I really was drawn to that. I was a little annoyed because it sounded really hard! I had to do a lot of research. A turning point was when I figured out that I wanted to use Sam’s voice-over. But it was both helpful and harder because it made the project much harder to write.”

Your son has the same desire to be loved that we all do.” This was the sentence in the trailer that made me want to watch Atypical. (I write about love here a lot)

I saw a lot of myself and my family in the Atypical family. The mum’s passion, making her life all about autism for so long that she forgot to live her own. The dad’s sweet disposition, feeling a disconnect to his son but making silent gestures to show his everlasting dedication to his family.

And of course, the sister. Sam’s sister spoke to me more in what she left unsaid. Watching the show as an autism sister I saw in her all the thoughts I have had in the last 19 years. I have so much in common with her and her family life. Not the obvious, as I am anything but a track star. Her triumphs are overlooked, her life is dependant on her brother’s and her future hangs in the balance. Sam says his sister never lets him get beat up as she instinctively steps in front of him when someone asks what’s wrong with him. Yet throughout the series she playfully punches him, hits him, climbs over him and jokes about his quirks. Casey (the sister) is so well written as a character she made me cry every time she was on screen.

Casey’s success is overshadowed because her family is preoccupied with Sam. When she meets up with them, she doesn’t hold a grudge. When her big news is obscured by what will happen to Sam, it’s her boyfriend who makes a scene about it to the parents. Casey knows Sam is paramount, she knows because she wants him to be. She struggles with deciding whether to ‘move on’ and do what’s best for her or to stay and help Sam through the hard times coming in the household. I lived this struggle. She is fearless when its comes to her brother and telling people to back off. She is his.

I can’t wait for season 2 of Atypical and I know it will be just as touching as the first. Well done Netflix. Well done to Robia Rashid for taking this on and doing it so well.

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Hope in Disney

553829_10150760901390030_1000986510_nI watched the Beauty and the Beast trailer on TV last night and I felt so emotional. People will say its cliche, or call me a princess because I love Disney films. I watched them all, every day, I know all the songs, the punchlines. It’s a world away from home. It’s how Christos and I bonded when we had nothing else in common.

Facebook drowned me in memory pictures this morning and reminded me that 5 years ago was the first time we took Chris to Disneyland Paris. I had been there the year before to scope it out. I was 22, he was 13 and my mum was exhausted. I had very little patience back then so shout out to my mum for being a saint and dealing with an overgrown teenager and an autistic son all on her own.

He was overwhelmed when we walked in. He didn’t know what was coming, what to expect, what to listen to or see first. The crowds were overbearing and we held on to him tight. By day two he was acting like a local. We were getting off the shuttle one morning and he fell. Suddenly in our heads alarm bells are ringing, the National Guard is summoned. You can see from the pictures that he was a big 13-year-old. He fell, but he didn’t cry. He limped because he still wanted to go to the park, however, he kept wanting to sit down. So, we went to the medical centre and we waited to be seen; after about an hour they just said it needs rest, so we sighed with relief, got him a wheelchair and used it as an excuse to give him anything he wanted. Every day at 5pm he wanted to go watch the parade, he identified his favourite rides, which we visited every day, his favourite crisps and the best ice cream. I won’t repeat myself, you can read about our Disneyland Adventures (volume 2 in 2015) in the  Mickeyminniegoofydonaldydaisypluto series of posts.

This month’s hope is also found in Disney.

Growing up with a brother that didn’t respond to his name, want to play with you and who broke things or rolled around on the floor in anger left little room for bonding. Don’t get
me wrong, I was connected to him from the day we found out he existed, but he never seemed to feel the same. Back when VCR’s were a thing, we had 2 drawers, a big cabinet and a small cabinet full of tapes. Mums family are all film fanatics, they love to chill out watching something and we have definitely inherited that habit. We would record them when they were on TV and then label and put away for watching later.

Despite his aversion to playing with me, he always joined me for a movie. I would put it on, and it would get his attention. Maybe it was that we all went silent when it started, maybe it was the music, the funny voices or maybe it was how much we laughed and how the atmosphere changed when a Disney song came on. We watched them religiously, nearly every day. On weekends we would watch Mickey Mouse or Donald Duck on TV and then in the evenings we would watch the Hunchback of Notre Dame, Aladdin, Hercules, Toy story, Lion King, Snow White, Sleeping Beauty etc. He picked it up quite fast and soon he knew the scenes off by heart. But when Frodo, Jafar, or Maleficent, or the Evil Queen were making an appearance he would hide behind the couch;  listening, but not looking.

Soon after, he started choosing what we were going to watch, he started fast forwarding the parts he found scary and he made sure each box had the correct tape in it. Cute right? No. He also needed all the stickers and covers to be perfect, which they were not because we used them every day. He wanted us to cut off the worn out bits, but cut them straight, and cut them right otherwise you needed to cut more and more and more until there was no sticker or cover left. He would also watch the whole movie, and then would rewind it and watch it in reverse. And because our VCR was old, some of the tapes got caught and were destroyed. My tapes. My Disney tapes. My escape. My world, the one without autism, the one where I was in control because I knew every word and I could count on all the happy endings.

I’m not bitter. Well, maybe a little bit.

It didn’t stop when DVD’s came out, he still ripped them to shreds, he scratched the discs, he ruined the plastic covers. I remember once, I had cleaned one of the discs with a cloth about 150 times. He would look at it touch it, and hand it back. So after the 151st time, I broke it in half. I was like “There, now it doesn’t matter if it’s clean”. Petty right? A bad sister right? The thing is I never treated him differently as a little brother because of his autism. I’d still deny that I had made him cry when mum would ask, I’d blame all broken stuff on him. I stole his food, he broke everything i owned. We yelled at eachother until we cried and we slapped eachother around a little bit. I’d put my foot in his face or throw my socks at him, and he would keep me up all night repeating words until we were both exhausted. And while this is how neurotypical siblings would bond, it wasn’t the same for us.

428326_10150752441475030_1462595363_nI remember how much I missed him, how my friends’ little brothers were so close to their sisters and how much they looked up to them. When I couldn’t get him to hang out with me, I would put on a Disney tape and put the volume right up. I’d hear the game boy music stop, the rustle of a blanket and tiny footsteps running up the stairs. And he would sit, ask me to apologise, turn the volume down and watch the movie with me.

I see a lot of Disney headlines that remind me of those lazy afternoons singing about a whole new world, or those Friday nights at our nans repeating the same old Lion King jokes with our granpa.

For example, Disney’s hit new musical Aladdin, playing in the West End, has announced its first dedicated Autism-Friendly performance will take place on Tuesday 29 August 2017. Wicked did this last year and The Lion King is staging its first Autism-Friendly performance Sunday 4 June 2017.

You may have heard that ‘Life, Animated’ was nominated for an Oscar this year. ‘Life, Animated’ follows the Suskind family and its unique way of communicating with their son — through Disney animated films. Inside his head, Owen created his own stories where he and Disney sidekicks battle villains who represent bullying, depression and even autism itself. The director has said that “Life, Animated” is a testament to the strength of family, the imagination of childhood and the power of story; “Owen is living a meaningful life and it’s not up to us to decide what that is. I’ve never met anyone more happy and content and open and honest about the world around him.” You can read more about it here and you can download it on iTunes or watch the trailer here.

Disney films don’t always have to be about the princess.