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Am I ‘normal’?

normal
/ˈnɔːm(ə)l/
adjective

conforming to a standard; usual, typical, or expected.

Is brown hair typical? What about blonde, red, gray. Are blue eyes usual? What about hazel, green or black? Are beauty spots standard? What about big lips, small feet, pronunciation. How can we say something is ‘normal’ when there are dozens of different body types, languages, dialects? When we suffer from allergies, have different taste buds, handle spice and heat in varying degrees and are shy, confident, anxious or sad? When we all have different abilities in math, sports, languages and even memory. From hunters to taking over the planet, social constructs have been a powerful tool in our conquests as well as our taming and undoing. Social expectations led to competition, innovation, scientific discoveries, cures and architectural wonders. But social constructs of class and what is ‘normal’ or beautiful have also led to genocide, poverty , abuse, racism and inequality which riddle our history, stain our future and which are all anything but ‘normal’.

In just the last 100 years our world – our ‘normal’ – has changed over and over again. From the fall of the Romanovs to the fall of the Berlin Wall, the Wall Street Crash, nuclear weapons and the war on terror to Gandhi, Mandela, Malala and then Trump and Brexit. From the Great Depression to Twitter, apartheid to landing on the moon, Chernobyl, #metoo, loving whomever you love and to the world’s first genetically edited babies – what even is ‘normal’? How come we keep fighting for these ‘normal’ ideals, preach, exclude, bully and not provide for every human simply because they don’t tick the ‘normal’ box when you – reading this – cannot define what is ‘normal’?

atypical
/eɪˈtɪpɪk(ə)l,aˈtɪpɪk(ə)l/
adjective
not representative of a type, group, or class.
If ‘normal’ cannot be defined – Every single one of us is atypical. Which makes us all typical in being unique, different, special, unusual, unexpected, abnormal.
Let’s talk about all the ways we exclude our fellow humans in every day life – with filling forms, education, fashion, language and expectations. Let’s defy all the social impediments we have put in place to facilitate notions of ‘normal’ and create a new social world which helps every ability and every human.
That’s what we have done with the SMILE project. We saw a gap in a system which meant that the Cypriot government didn’t understand the needs of it’s people and doesn’t provide equal opportunities to the communities it is supposed to support. So, we defied the ‘conventional’, we shouted from the rooftops about our kid’s rights – regardless of autism – and we imagined and created a space for them.
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Celebrate your uniqueness, your neighbour’s quirks, listen to someone’s opinions which are not akin to your own. Learn about hair colours other than your own and embrace all the things that make us typically atypical. Help, allow and encourage everyone around you to be the version of themselves they already are and not the one they think they have to be.
Donating to Autism Support Famagusta supports the local autistic community directly – donate here.
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21 and Atypical: More than meets the eye

Autism traits are not immediately visible all the time. It may take a while to notice the stimming, the echolalia or the sensory deprivation. For decades we have been trying to be as mainstream as possible, but the tables are turning now and our uniqueness is being celebrated. People are telling their stories and we are telling Christos and Stephanos’ stories with the hope being that you look a bit closer, stare a bit less and learn a bit more next time you meet a family on the spectrum. 

Christos and Stephanos are just 2 neurodiverse adults. They communicate through PECS or simple sentences, they reach milestones at their own pace, they love, laugh and feel the same as you. They are a bit more sensitive to light or noise and may come to a conclusion a different way but they are an equal part of ‘your’ world. This society we have conjured up, with its timeframes, standards and expectations is in constant motion and it is up to us to make sure no one gets left behind just because they don’t fit into a make-believe box. The perpetual need to fit in is what makes up most of the worries autism families have. Will he fit in? Will she support herself? What if they get lost? Will they find their way? Who will be there when we’re gone? The therapies they undergo are for their own quality of life, but the social conditioning they go through – no flapping, no screaming, no stimming etc – comes from fear of being different. It stems from the desperation of wondering what society will do to them if we aren’t there.

Then, they do something amazing and we forget all about society’s fictional rules and its illusions of greatness. Because we witness greatness every day. Our kids are living proof that just because someone said it was impossible doesn’t mean it is. That just because they didn’t speak until they were 8 doesn’t mean they don’t understand what we say. They stomp all over misconceptions and create worlds that work on inspiration, love and growth. We see this every day with our kids but we spend so long worrying and sheltering them that we forget how intelligent they are and that they have been watching us and learning for years while we were too busy talking. 

thumbnail_8C5CE67D-701A-4313-916B-8E79ACC208CDStephanos’ mum remembers a cruise trip to the Greek Islands with all 6 kids. “On the second day we were all upstairs playing cards and Steph was stimming around us, in our line of vision. There were 6 pair of eyes focused on playing cards but also watching Steph. At some point, in a split second, he was gone. We lost him. Steph’s verbal abilities at that age were limited but he could say “toilet” and “help”. Immediately, the 6 of us had spread out on both sides of the ship, on all the floors, in the lifts and asking people if they had seen him. Finally, some restaurant guests who knew us from Ayia Napa said they had seen him in the lift going down. We went to our floor immediately and found him in the loo. He used the lift, went to the correct floor and corridor and knocked on his brother’s room door which was different to our own! What is amazing to me is that he knew our room was empty and so knocked on his brother’s door instead.” It may seem menial to you, going to the loo when you need to, but it was a milestone for Stephanos. It was an eye-opener for the family, and a reminder that just because they are overprotective and Stephanos doesn’t speak  it doesn’t mean that he is not fully aware of his surroundings or capable to make rational decisions to fit his needs.

Last year, when Christos and I were travelling back from Sri Lanka we were sat on 29746571_10156190751480030_515778963_othe plane repeating his schedule and what times he would eat what. So we’re cuddling under the blankets talking about pasta when I realised I had to explain time zones to my brother who is obsessed with time. IMAGINE, trying to explain time zones to someone with only numbers and the words – dad, mum, Christos, Theodora, airplane, and (obviously) pasta.  I showed him the time in Colombo and said this is dad, the time in Doha which is where Christos and Theodora are going, and the time in Cyprus where mum is. Then explained that the airplane would take off and land in between Colombo and Cyprus at Doha. He was staring at the phone and me while I’m making grand gestures and airplane noises and showing him numbers. I wasn’t sure he got it, I underestimated him. Then we got to Doha and he asked me to change the time on my phone to the local time, for which he had done the math in his head, and did the same when we landed in Cyprus. Now, he has a globe in his room and can point to where we all are and where we’re going next. 

We’ve seen these boys grow, learn and make progress in front of our eyes. Yet, somehow these false thresholds set by our communities seep into our subconscious and make us forget how extraordinarily ordinary they can be. They quickly catch us by surprise, always a step ahead, whether it’s giving us directions or using words we didn’t even know they knew and remind us to not stereotype but to learn about the talents our kids have and to stop thinking there’s a limit to their potential.

Just because a computer is not running Windows doesn’t mean that it’s broken. Not all the features of atypical human operating systems are bugs” – Neurotribes Read more about Autism Advantages.

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21 and Atypical: Christos

There are 180 posts about Christos on this blog so I will spare you the repeat and link you to the one that describes how I see him best. I wrote this on his 18th birthday and contributed it to Ambitious about Autism’s International Day of Families campaign.

Click to read: To Christos, on your 18th birthday: https://christos90.wordpress.com/2016/05/05/to-christos-on-your-18th-birthday/ 

Christos Profile: 

Born: 06.05.1998

Diagnosed: 2001

Loves: Music and Food

Loathes: People singing and ruining the music, sharing food.

Character: Cheeky monkey

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My mum does not recall the exact age but she remembers him being very “difficult” on his first birthday. We were recently watching old videos of all the cousins and in one video he is running after the camera, responding to his name and in the next he doesn’t turn around even after 4 -5 times of hearing his name.

Over the next few months/years my parents watched their big eyed, pointy eared little monkey become isolated. They took him in for hearing tests and were told there was nothing wrong. He started walking on his toes and at 2 years old he still hadn’t spoken any words. My parents saw a speech therapist who referred them to the general hospital in Nicosia for further exams on nothing specific. At the age of 3+ he was diagnosed from mild to moderate autism. At the age of 4+ he was diagnosed again in the UK.

The family were distraught. Would he go to school? Would he speak? Would he be able to take care of himself? Would he have friends? Fast forward 16 years and we have a young, gentle man full of promise, love, compassion, who has friends, who takes care of us and has a lot to say. He takes care of the people he loves and makes sure his friend Stephanos always has the swing next to him at break time.

My baby brother is iconic.

#21andatypical

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The beach at Christmas

We are in Sri Lanka again this year for Christmas. Christos has not joined us but we spend 90% of the time imagining he was here, talking about what he would be doing (and eating) if he was and missing him so so much. Everywhere we go we are asked about him. The people of Amaya Lake were enamoured by him and are looking forward to seeing him again next year.

You may remember that last year we were alone on Boxing Day and how proud I was/am of my gentle giant. Well, this year my dad and I are in Kandy and Christos is spending Christmas in Cyprus absolutely surrounded and crowded with people who love him. When I spoke to him yesterday he was having his tea, completely dazed with happiness and reminding me that I need to go back on 28th because he’s waiting.

Every year, on this day, I say a humble thank you. On this day, I remember all those who weren’t as lucky as I was; those who were lost, who lost people, always remembering and paying tribute to the victims of the tsunami of 2004. I never take for granted how lucky my family was that day to have escaped without a loss. When I look at the Indian Ocean I am reminded of the fear it caused on 26th December 2004 and it can never seem the same again. I am reminded that that’s how quickly life can change.

This year has been good to us. Next year will be a new adventure. With Christos turning 21, we are exploring new options for his day to day life. I’m hoping to share with you later in the year how we tackle this new milestone. No doubt, it will be with an army of autism families by our side. This year has reminded me to never take anything for granted. One second I’m watching Frazier, next second my mum is telling me how her car is trashed and how narrowly she escaped. That’s how quickly life can change.

This year, on 23rd December, Indonesia was struck by another tsunami. The death toll so far is 429. 16,082 people in tsunami-affected regions were confirmed as displaced. It is expected that more buildings are at risk of collapse or being hit by new waves as the volcano is still active. A concentrated death toll of 106 has been confirmed at Java’s Tanjung Lesung beach resort. A pop band was hosting a party on the beach when they were swept by Saturday’s tsunami. That’s how quickly life can change.

Yesterday, we were at a gala dinner, opening presents, eating too much, drinking even more, enjoying and celebrating. Today, is a reminder to give back. Remember, honour, be generous and, most of all, be kind. Love who you love and let others love you. Appreciate, respect and take nothing for granted. That’s the holiday spirit.

Happy hols my kindred spirits ♥️

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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 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 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.