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Eternal Valentine

Love in an autism home means something different to the rest of the world. It means hassling your little bro for attention when he won’t play with you. It means finishing your homework and then doing his homework and speech therapy with him just so you can spend time together. Watching the same movie/scene over and over just to share experiences with him. It means staying up every night until he falls asleep first repeating his words. It means giving him all your tapes, toys, CDs, phones in the hope that it calms him down. It means running after him. It means making sure he is okay first.  

Love in an autism home is fierce and overwhelming. As a sibling, I learned at the age of 10 that my childhood, teens and adulthood weren’t my own. As the big sister I thought this little boy was going to adore me, follow me around and annoy me for the rest of my life. Instead, he flipped it all on me and made me the follower.

Love in an autism home breaks you apart and builds you back up. It takes control of every little bit of your soul – even the ones you don’t find out about until years later – and it makes every piece of you better. It gives you the highest highs and some lows far lower than I ever knew were possible.

Love in an autism home takes away your identity. Whoever you thought you were is gone and now you’re someone new. Someone capable of things you never thought of – strength, emotional intelligence, thinking beyond the imaginable. It forces you to love yourself.

Love in an autism home inspires fears bigger than anything you can imagine. I am crippled by the fear of something happening to me because what would happen to him? Who would understand him and give him what he needs? Will he have a home and will he be safe? My fears manifest in love for myself; taking care of me and being overprotective of my welbeing. It made me selfish when it comes to health and forced me to be prepared for any eventuality I can imagine.

Love in an autism home takes away your eyesight and gives you perception. It leaves you blind to egos and gives you uninterrupted vision to see beyond the visible. To dream big and look forward to a future that is waiting to be written by the struggle and fight and determination of autism families for autism families.

On this day I reflect on a life so full of love and I am so grateful for my eternal Valentine – my brother. I hope I get to spend all my lifetimes being inspired by you.

Happy Valentines, Galentines, Malentines, Palentines and Friday to all of you ❤

 

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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: Planet Blue💙

It’s autism awareness month and you may notice that a lot of the posts are blue. You may also scroll past or see numerous autism-friendly events and educational activities which will be taking place all month, everywhere in the world, in order to increase understanding, acceptance and further support people with autism.

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But why blue for autism? While there’s no definitive answer I think the reasoning is found in the meaning of Blue.

Blue is a colour found in nature such as the pale blue of a daytime sky or the rich dark blue of a deep ocean. It is for this reason that it is described as calm and serene. Blue seeks peace and tranquillity and although life with autism is not calm, Christos and Stephanos feel safe in their own space and surrounded by people that adore them. Stephanos’ godsister, Joanna, remember their days in primary school when Stephanos used to wait for her to pick him up from class for break and hold her hand when they had to play volleyball or basketball at gym. Aren’t you most at peace when you feel safe?

Blue is also a cool colour which can sometimes seem icy, distant or even cold. Before the diagnosis, the speech therapy and before we adjust to this new world of living with autism it can sometimes seem as though they are distant or not interested. When they don’t respond to their name, when they wiggle themselves out of a hug, when they wipe away a kiss, it may seem like a loss but Christos is an affectionate man who intimacy. He laughs with us, eats with us and cries when we are sad. He helps us when we are in pain and he surprises us with hand holding or a kiss. Stephanos, is more social in general and he allows kids to approach and touch him, to hold his hand, to guide him and even to kiss his cheek. He responds and seeks affection from his family while also showing them he loves them daily. The myth about people on the spectrum being unapproachable is one we aim to dispel every day. Don’t you find that you appreciate your alone-time as well?

42816046_319009918650137_5237303023620849664_nBlue is idealistic, it explores and pushed the boundaries of self-expression; in fact, it is the most used colour in business and 53% of country flags incorporate some shade of blue. Christos and Stephanos push limits in communication without words. They are imaginative and creative in their journeys. Stephanos dances, sings, plays music and has his own drawing studio. At school his talents are further cultivated by creating through woodwork and using the hot glue gun to complete his own work. His abilities are not defined by his speech or his ways of stimming and he reminds everyone around him to not underestimate his neurodiversity.

Blue can be conservative and predictable, a safe and secure colour; a traditional colour if you like. Christos used to be notorious for not liking change. Over the years we have seen such massive changes in him in terms of eating habits or changing his daily schedule last minute. He has become open-minded and has broken out of the shell the word ‘autism’ imposed on him. He is safe in his predictability and unpredictable in his emotional intelligence. Change may be difficult for Blue but how many of you are completely comfortable with frequent changes?

Blue also represents freedom. Perhaps freedom of mind, freedom to be whomever they want to be. Free from the restraints and pressures of social ‘norms’, liberated from being confined in one box and ‘fitting in’.

So, it’s autism awareness month and if you are reading this you’ve taken one step to contributing in spreading awareness. Other things you can do are:

Tell someone it’s autism awareness month.

Wear blue; a t shirt, accessory, or even blue jeans with the intention of it being for autism!

Image result for autism awareness puzzle ribbonDisplay the puzzle: The Autism Awareness Puzzle Ribbon is the most recognised symbol of the autism community in the world. Wear the Autism Awareness Puzzle Ribbon – as a pin on your shirt, a magnet on your car, a badge on your blog, or even your Facebook profile picture. The puzzle pattern reflects the complexity of the autism spectrum. The different colours and shapes represent the diversity of the people and families living with the condition. 

Find out what’s happening near you. Many Autism 15032849_10154114892521238_68260037536364233_nSociety local affiliates hold special events in their communities throughout the month of April.

Watch a movie or documentary about autism. Louis Theroux’s documentary “Extreme Love Autism”, Oscar nominated “Life, Animated”, “Autism in Love” on Netflix, “Girls with Autism” on ITV are just a handful of recent depictions of autism.  You can also read about Autism, and it doesn’t have to be a journal, or research. It can be fiction, like “The Curious Incident of the Dog in the Night-Time” by Mark Haddon, “House Rules” by Jodi Picoult or “Memoirs of an Imaginary Friend” by Matthew Dicks.

Donate to your local charity or ours Autism Support Famagusta .

Read #21andAtypical, share your story and #StandUpForAutism .

By embracing the puzzle piece, not the missing puzzle piece, we embrace the piece of our world that is autism. Tomorrow, the world will follow a tradition pioneered by Autism Speaks and Light It Up Blue. And while lighting a blue light doesn’t help parents struggling to balance a job, a family and autism, it raises awareness. Awareness will come from people who notice the different monuments/buildings worldwide going blue, a window in a quiet street displaying a puzzle ribbon, a local business fundraising for autism and they will ask questions about it. They might tell others, or go home and read about it. They may recognise it next time they see it and not stare, they might pass down the knowledge to younger generations.

If we could go into every house and help every family struggling with autism, we would. Instead, we will wear blue and we will tell people to wear blue. We will tell them why and we will talk about autism until all the pieces fit, until everyone understands.

From the Empire State Building in New York, Niagara Falls, the London Eye, Sidney Opera House, Christ the Redeemer in Rio de Janeiro, Petra in Jordan, the Eiffel Tower in Paris, the Leaning Tower of Pisa in Italy, the Taj Mahal in India, the Table Mountain in South Africa, the Burj Al Arab in Dubai, the Canton Tower in China, and the Great Buddha at Hyogo, people all over the world will Light it Up Blue to honour World Autism Awareness Day tomorrow. Will you?

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An autism sister watching Atypical Season 2, Episode 2

I’m only going to talk about Casey (the sister) in this post. I want you to see her the way I see her.  I want you to see through her to all the sisters out there.

42877323_986385234880394_644448336547414016_nThe sister at home – Champion. She is the neurotypical child. She is the one that outed her mum. She is a good student, and a sought after athlete.

She is attuned with her surroundings and the needs of every member of her family. She blames herself when the marriage is put in jeopardy, when Sam finds out and tries to keep normalcy when Sam needs it the most. She takes on responsibilities no one has assigned her with. No one in her family expects her to be all these things, to think of all the implications and consequences. Her thoughts and needs take a back seat because she is the neurotypical, she is the one that has to be there while the parents sort out their own stuff. There’s no time for her emotional distress because she has to step up for every other member in their family. Plus, no one asked how she was dealing with her parent’s problems or in her new school – her champion mask is impenetrable.

The sister at old school – Shield: Everyone knows that you do not mess with Casey and Sam. Sam continues coping at school without Casey because of the foundations she has laid in previous years. It is expected that there will be repercussions when it comes to Sam, and no one wants to take that risk with her. I’m getting ahead of myself but in Episode 3, a fellow pupil accidentally does something to Sam and she says to him “Tell Casey I didn’t mean it”. Her shield mask is impactful.

The sister at new school – Timid. We haven’t seen this side of Casey yet. Mostly because she is so assertive in all her other roles. She is outside her comfort-zone. No one knows her as Sam’s sister here – they know her as an athlete, they will get to know her as Casey. It’s hard for her to readjust and define herself as her own person. She resorts to funny remarks and sarcasm almost every opportunity she gets while she is at the new school. Like I mentioned above, no one in her family has asked how her first few days at school have been – not on screen anyway. That’s not something that just hasn’t been addressed in the script, that’s how it really is in life.

On her first day she had a brought prepared lunch from home, on her second day she has to survive on peanuts and on the third day someone offers her a helping hand (whether it’s a good idea or not is irrelevant). She grabs it because she needs to be taken care of. Do you see how inspired this analogy is? It’s a representation of all the crap she has to deal with in the last few days narrated in food, the thing that sustains us.

Instead of crumbling she picks herself up and watches the penguin cam with her brother. She doesn’t even see herself as being in need of support or comfort. She deals and returns to what’s important. She doesn’t take the compliment from her dad calling her a ‘good kid’ because the things she does, and the support she offers comes is who she is. It’s not fake, it’s not something she has to think of; it’s not for a reward. She has to find her Casey mask.

*End*

As an autism sister, it’s was impossible for me to define myself or to get to know myself when i was growing up. Family break ups and autism drowned out my noise. I never had the chance to sit down and think “Right, this is what I want; this is what I like; this is what I don’t like”. My teenage years were me moulding myself to what I thought my family needed.

I moved away because I thought that’s what I needed to do so I could offer my brother the best future I could. I did law because I thought it would make me financially stable for my brother. I did an MA because I thought that’s what was expected of me. And my relationships and friendships? Well.

In the last two years, I have gotten to know myself . I spend more time with me, I know what films I like – not because my friends like them. I know what music I want to listen to – not because it’s popular. I know what books I like to read – not because they’re bestsellers. I used to drink beer because we were at a pub or eat beef because steak is  ‘the best’. I’d go out every time people had plans without any regard to what I wanted, I’d watch all the blockbusters, listen to all the hits and pretend that I didn’t have a care in the world because no one likes a downer.

Now I know that I don’t want to be a solicitor, I don’t like beef, I can tell people I disagree without the crippling fear that they won’t like me anymore. 12 years down the line, I bagged myself a blind date with me.

It’s hard for any teen to figure out who they are. Add a break up and autism in the mix and things get even worse.

When you look at Casey, or an autism family, look beyond the autism cloak. They are still humans, flawed, broken, tired, brave, and sometimes inspirational humans. When you watch Atypical, read between the scripted lines.

Casey is the single most inspiring female character I have watched in the last few years. I hope you see her through my eyes and that you let her teach you about autism, family and love.

After the trauma of the first episode, i’m ready to binge. I’ll let you know when i come up for air. 😊

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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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The Sri Lanka Diaries

Christos, Dad and I are in Sri Lanka for 13 days. Note that this is the first time Christos has travelled without my mum. The prospect of travelling with an autistic adult who towers over both his father and sister was daunting. However, the only restless Pereras were the neurotypical ones. Christos cruised through the airport security, the airplane, the food, the transit and the overnight flight.

He adjusted to life in Sri Lanka just like a true traveller. All he asks is what the schedule is for the day. At our number one hotel we had a suite, a pool and 3 buffets. The staff were curious about Christos and keen to help in any way possible. By day two, everyone knew who he was. They knew what breakfast he liked and what ice cream he preferred. They even learned that ‘Efharisto’ means ‘thank you’ in Greek. Christos has no reservations when it comes to being in Amaya Lake. Even though it’s been 7 years since he last visited, he remembers it as if he has been there this whole time. His memory is impeccable.

The way of life, the culture is the first thing you notice when you get off the plane. Everyone is smiling, everyone wants to talk, help, and everyone stares. I can speak for Cypriots and Brits when I say that staring is not ‘polite’ and not encouraged. However, here it’s unavoidable. Staring here is not malicious because if you have an issue with someone you will sort it out immediately. Staring is education. It’s a revelation how little it bothers us here in comparison to Europe. The chasm between these two continents is evident in its people.

We talk about how lucky we are with Christo every day. There are families that can’t even dream about a vacation with autism. Yet, here we are. Talking to people who don’t know the word and explaining to them what this spectrum is all about. We are literally walking, talking, breathing awareness. Just by walking in a room Christos captures their attention, he evokes questions and he bestows new knowledge. This information will be talked about with friends, with family, and it will change someone’s life; maybe not here, maybe not now but one day.

I’ll go into the details of this adventure in later posts. For now, let me just remind you to respect and understand each other. We are only here for a limited time, and in that time we can make wonders happen. Remember that you may be the missing piece to a puzzle we all want solved.

Happy Holidays from the Pereras.