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20 candles

Happy 20th birthday brother 💙 From the day that I met you, I knew that I would love you till the day I die. All these moments from our childhood, when we were together, I want to remember forever.

I hope you will dance, laugh, smile for all your birthdays and I wish I will be there too.

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20

It’s May and I get to cry about my little brother turning 20.

31646765_10156283477410030_4157660885218754560_nI was in Cyprus 2 weeks ago and everywhere I went people talked about how good he is, how handsome, how they miss him and how much they love him. You might think that me writing this is what makes the difference but it’s not. It’s all of my family and how they raised him, how they treat him, how they flaunt him and how much they love him. He has become someone people want to know, and want to know more about.

I took over his room while I was visiting. He didn’t barge into his room to wake me up before 8am even though I could hear him being awake from 7am. He didn’t tell me to fold my clothes, or pick up stuff off the floor of his room, even though the rest of the house had to be spotless. When I couldn’t find the honey – he showed me where it was. When I wanted to drink one of his juices he kissed me and gently took the juice away. When I wanted to watch something, he let me even though it was his time to watch cartoons. When I wanted to watch a DVD he set a time for me and him to watch it together, even though he has this thing about not watching DVDs unless the stars align.  He let me bite off bits of his food even though Christos doesn’t share food. He let me pinch his cheeks and chin repeatedly despite his sensory overload.  When we said goodbye at the airport he hugged me for one second longer, because he knew I would ask for it anyway. He knows I’m a guest and he lets me be one. He has allowed me to float in and out of his life for 10 years.

10 years.

I asked mum if she thought he knew I was his sister or whether he thought I was some girl who showed up 10 days a year to annoy him. She said I was crazy.

But I have lived in a different country for half his life. Yes, there are many things I can say to myself to make it sound ok but right now I am just a girl in a foreign land waiting for him to have another birthday – from which I’ll be absent.

So, I write a blog post instead of a card, I ask mum for pictures instead of skyping and I try even harder to be better. I think of the years I was there and how I was a part of his smiles, his laughter, his crying, his bedtime rituals, his repetitiveness, his speech therapy, his tantrums, his education, his homework, his first steps, his first words, his transition, his moves, his development. And I want, with all of my being, for that to be enough and for him to know that I am his sister.

20 is the theme of May but I don’t know why and I don’t know how I’m gonna pull it off. Let’s figure it out together.

In other, less gloomy, news it was an eventful Autism Awareness Month this year. Here are some interesting reads in case you missed them:

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April 2018: 2 Science Headlines

1/ Social pressure

A drug is being tested which claims to help people on the autism spectrum with social skills. Balovaptan, said drug, acts on receptors. Receptors are located on the outside of cells and communicate commands to the inside of the cell. There receptors receive a hormone called vasopressin, which is a hormone from the brain which influences social behavior. Balovaptan is designed to block a receptor of a specific vasopressin, which might be linked to social anxiety says Larry Young, professor of psychiatry at Emory University. Basically, the brain sends vasopressin to cell receptors and some of these hormones affect social behaviour. This drug might be able to prevent the hormones affecting social anxiety. Behavioural “symptoms” of autism can be identified (but not limited to) as trouble in communication and interaction.

The idea of using drugs to change characteristics of people on the autism spectrum to “fit in” to a neurotypical society is worrying. That being said, it is important that such medication is available for the safety of the people that need them and for the mental well-being of the people that make the decision to take them.

We all have some form of social anxiety. Whether its tapping fingers, playing with your hair, flapping arms or other forms of stimming. People on the spectrum are under pressure to behave neurotypically to avoid bullying, rejection, discrimination – referred to as ‘masking’. This may be a solution for some but there’s a better one – it starts with ‘aware’ and ends with ‘ness’.

2/ Genes

Remember the MSSNG project which highlighted “an additional 18 gene variations linked to the development of ASD. Nature Neuroscience Journal, published a report on this project which found that the 18 newly-identified autism genes can be instrumental in understanding the pathways in the brain that affect how cells ‘talk’ to each other.” (The Biology of Autism)?

Remember the research published by Princeton University and Simons Foundation researchers where they analysed the human genome to try and predict which genes are likely to cause autism? They had linked about 2,500 genes to autism; we have an approximate total of 24,000. (Mr Autastic)

WELL: Researchers have found alterations of the gene thousand and one amino-acid kinase 2, known as TAOK2, which is so much fun to say out loud. The alterations found are thought to play a direct role in neurodevelopmental disorders, including autism.

Karun Singh, study co-author and researcher with McMaster’s Stem Cell and Cancer Research Institute said: “This is exciting because it focuses our research effort on the individual gene, saving us time and money as it will speed up the development of targeted therapeutics to this gene alone.”

img_6972Science is on its way to delivering answers to what causes autism. They are closer to finding out how to predict autism, and, as a result, closer to finding a way to prevent it. In the  meantime, it’s up to you to ask questions, to include to shatter stereotypes and to embrace the people around you.

 

 

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April 2018: 2 new facts

  1. In 2007, the Qatar representative to the UN, Her Highness Sheikha Mozah bint Nasser Al Missned,  put forward a UN General Assembly resolution, to create World Autism Awareness Day. This gave way to today, a day dedicated to raising awareness about ASD across the world.
  2. Numbers published by the World Health Organisation show that approx 1 in 160 children are diagnosed with autism. That suggests that of the 7.2 billion people living on Earth, approx 45 million are diagnosed. Plus the lost generation and women that never received a diagnosis due to a variety of factors.

45 million! Autism is no longer a hidden disability.

Autism awareness is not confined to this day, or to this month. We fight for it every day to help educate people on how to better understand autistic people and lessen the stigma and discrimination that autistic people face in every day life. Awareness means that the community can identify and respect the autism spectrum. Awareness means that the financial burden families have to bear may be lessened with proper access to support and by making autism education and alternative therapies a mainstream issue.

Welcome to autism awareness month.

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The “Normal” Cult

29830733_10156190751535030_853762012_oIt’s autism awareness week if you hadn’t noticed & I read this article on BBC about women on the spectrum – It all made sense when we found out we were autistic . These women are teachers, PhD candidates, artists, comedians, psychologists and they are inspiring (& autistic).

About 700,000 people in the UK are on the autism spectrum, according to the National Autistic Society. That’s approx 1.05% of the UK population.

In a one-hour special for Channel 4, tonight 28 March 2018, trainee human rights lawyer Georgia Harper and artist Sam Ahern, who both have autism, aim to uncover the true face of autism in the UK today. I hope you’ll be watching.

Autism awareness isn’t just about the future of autism, it’s also about the past and present. It’s about every person who feels they don’t “fit in”, all the times it feels like everyone else was given a manual on life, a ‘lost generation’ of thousands of adults going through life without a diagnosis. Autism awareness is about informing, spreading knowledge, sharing stories, finding new ways, and removing the stigma imposed by a system that doesn’t understand.

Autism awareness isn’t spread only by those living with autism. It’s a plague – a good plague. Awareness is born out of love, it spreads with our voices and makes an impact with our actions. It starts with sharing a story with another mum, or with children asking questions, with major airports introducing measures to help passengers with autism, shops introducing ‘autism hours’ and employers investing in autism training for staff. All the milestones we have witnessed in the world in the 5 years started with a voice.

The biggest obstacle to understanding autism is the expectation to look ‘normal’, the imposition of being ‘neurotypical’ and the social bullying that makes us dismiss and disable anything outside this fictional realm of “normal-ness”. We are programmed to treat anything different differently but what happens when you can’t see the difference? We grow up judging books by their covers and learn to condemn them when the cover doesn’t match what we thought should be inside. You ask someone,”Why is it weird if someone won’t make eye contact?”. Unless it’s a cultural trait, no one can think of an answer except a variation of “It’s not normal”.

You see someone and they look ‘normal’, they speak ‘normalish’, their lives seem ‘normal’ – they have a PhD, or a job or a family and they fit in your category of ‘normal’. As soon as you find out they are on the spectrum your perception shifts. You think, “how? why? really?”.

Autism awareness aims to infiltrate and destroy the ‘normal’ cult we subscribe to. It wants to shatter illusions of what we are supposed to do, it wants to expand our horizons and adds new words to our dictionaries. Just like all the once outcasts of this made up and exclusive society of “normal” the autism awareness movement is working. One in 100 people in the UK are diagnosed with ASD, teachers and police officers are trained, there are groundbreaking findings in ASD research and major channels invest money in documentaries, series and autistic actors/presenters (or muppets).

Autism is becoming a regular headline and it all starts with a voice. April is Autism Awareness day/week/month: here are some things you can do to help – Until everyone understands ; Wear Blue ; 30 things to do in April .

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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.