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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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21 and Atypical: Hakuna Matata

It means ‘no worries’ for the rest of your days.

IMG_6995Christos and Stephanos grew up loving Disney, Warner Bros, Dreamworks, Pixar etc – also we love all those films so it was one of the repetitive actions that we didn’t worry about or mind as much. Among their favourites are Anastasia, Hercules, Peter Pan, Robin Hood, Pocahontas, Cars, The Road to El Dorado and dozens of others. Our houses were always full of Mickey, Minnie and all the heroes and heroines they grew up watching and imitating. In this post we’ll talk about the Lion King. Since its debut in 1994 The Lion King, won two Golden Globes, two Academy Awards and that’s not even listing all of them! The musical version won a Tony for Best Musical and numerous awards for Best Costume and Lighting. Later this year, summer 2019, Disney are releasing a remake of the Lion King using virtual cinematography technology. Basically, we’re obsessed with the Lion King.

I was lucky enough to go watch the musical in London a couple of weeks ago. Listening to that opening song I was transported back to our living room where I am desperately trying to get my little brother to notice me and play with me. After the age of 1 Christos started ignoring us and tantrums were just ordinary. As a big sister I was enamoured by him and his smile – the one that was too big for his face – and wanted his attention so badly that I let him destroy all my dolls, all my board games, all my Disney VHSs. One of the only things he would let me do with him was watch animated films, like the Lion King. In fact, we watched it almost every day for years. He would play the whole film and then rewind it and watch it in reverse, or he would fast forward scenes that he was scared of.  It got to the point that we had to limit it to only watching it when we visited our grandparents. My grandad, wanting to be part of his world like all of us, would sit with him and watch it whenever he got a chance. He often tells us stories about Christos being afraid of the hyenas and at a specific scary scene (elephant graveyard/Scar’s song) he would  hide behind the couch and listen carefully until it was safe for him to go and take his seat in front of the TV again. Christos wasn’t much for emotion back then (he’s a big softie now) but our grandad remembers how happy he was each and every time he watched it and how he lived every different scene every time. My love affair with these animated films was reignited when I realised they were a world where I could talk to my brother. Through scenes, colours, songs and music I saw my introverted brother react to sounds, express fear, amusement and sadness. Simba, Timon and Pumba unlocked something in Christos that I thought I could never access. Of course, he doesn’t let us sing along or dance or say the lines but there are rare occasions when he does. Like dancing to “A whole new world” with my mum on his 18th birthday or letting me watch The Emperor’s New Groove even though he would rather Peter Pan. Anyway, there I was watching the Lion King musical, weeping at how beautiful it was and at how grateful I am for that first song, the song that brought my brother back to me.
Stephanos’ sister, Christina, has told me about how they watch the Lion King as a reminiscent of what they used to do as kids. When the ‘Hakuna Matata’ song comes up they literally both jump up out of their seats, just like they used to do, and they start imitating Timon and Pumba; she’s Timon and he’s Pumba! She describes how fascinating it is to see Stephanos so full of excitement and joy and how well he can imitate these characters. It’s a great feeling seeing your brother engage and show off skills that you would otherwise miss. It reminds us that while our boys are capable of imitating and pretending, they are also making the choice to just be themselves. Stephanos loves music. His mum was telling me about his artistic side which has developed over the years and what a big part of his life music has become. You may also remember that music is used as a form of alternative therapy many reasons but also for people with ASD. Stephanos jumps into place as Pumba, the big loveable friend who never gave up on Simba, and he hits the exact notes of Hakuna Matata – the most wonderful phrase. Not only that but he also makes the background sounds of the music just with his mouth. His sister says “he is unbelievable and so talented”. Chryso, Stephanos’ mum, tells me about how he knows all songs, lyrics and scenes. He still watches them and he can become quite obsessive by rewinding and fast forwarding to specific scenes. Sometimes his brothers and sisters act out particular parts of  a film, for example “its a piranha its a piranha!” from Tarzan to Stephanos’ amusement. While for me it took years to break into Christos’ world, Christina remembers the Lion King singing as being just a part of the activities her and Stephanos shared. They danced to “I will Survive” and they drew together – even though when he was younger he was already a perfectionist and wouldn’t let her draw what she wanted but would take his pen and do it his way on top of her drawing.

In both cases the Lion King brought out something in the two boys that we hadn’t seen before. Their singing, acting and dancing abilities or their emotional and more child-like nature. In either case, they grace us with showing us a part of their character that others wouldn’t see because the autism label overshadows it. When you think back to what these animation films meant to you, or your kids do you see a difference? Did you not squeal when Jafar turns into a snake? Did you not bop your head or scream out the words to Hakuna Matata? Did you not feel the pride of Mulan going back home and taking her place in the world? Is autism even factor in on how we all felt watching these characters? In the end, whether we’re under the sea, on the road to El Dorado, or just around the river bend aren’t we all the same?

#21andAtypical

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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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Hope in April – Until everyone understands

World Autism Awareness Week: 27 March–2 April 2017

World Autism Awareness Day: 2nd April 2017

USA National Autism Awareness Month: April 2017

As I write this, I am listening to Theresa May trying to answer questions about triggering Article 50 earlier on today. And then I look over at Christos playing on his game boy and I think “What can I do?”. I’m home until Sunday, which incidentally is World Autism Awareness Day. This is the day that Autism Speaks launches Light It Up Blue – where thousands of iconic landmarks and buildings join the hundreds of thousands of homes and communities around the world to “light it up blue” in support of people living with autism. Autism-friendly events and educational activities take place all month to increase understanding and acceptance and further support people with autism. Join this initiative here. You can register your business, you can wear a blue t-shirt, a blue accessory, you can use the official hashtag for the event #LightItUpBlue, you can donate, or you can just read one article about autism. Whatever you do, all that matters is that you do something. Autism Awareness Day/Week/Month is all about knowledge, and it’s all up to you.

Every year I post about what you can do and what is being done around you. So here goes:

  1. Display the puzzle: The Autism Awareness Puzzle Ribbon is the most recognized 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. The brightness of the ribbon signals hope that through increased awareness of autism, and through early intervention and access to appropriate services/supports, people with autism will lead full lives able to interact with the world on the own terms.
  2. Find out what’s happening near you: Connect with your neighborhood. Many Autism Society local affiliates hold special events in their communities throughout the month of April.
  3. 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.

IMG_73964. Wear blue.

5.  Watch the National Autistic Society’s video about how you can get involved.

6. Fundraise. In your community, your school, your work or within your group of friends. NAS has released free teacher resource pack too. Each pack is level-specific, and contains teacher guidance, lesson and assembly plans, presentations and activities to help you improve understanding of autism at school. For fundraising ideas see what Connor is doing this year. A fundraising pack is also available for you to get for free or get ideas. Join a bucket collection or create your own. From 27 March–2 April, collections will be taking place across the UK at different train/tube stations! Participating stations include: King’s Cross, Waterloo, Euston, Paddington, Victoria, Baker Street, Charing Cross, Liverpool Street, Oxford Circus, Leicester Square, Cardiff Central, Bristol Temple Meads and Nottingham station. Each day will be split into 3 hour shifts and if you’d like to get involved please email Caroline who will tell you which places are still available. If you are not in the UK or there isn’t a bucket collection near you, you can try collecting at your local supermarket, local train or bus station, workplace, local community centre. Top tips and important information for bucket collections can be found here as well as information on sending money. If you are in Cyprus and you want to hold an event like this you can contact our Autism Support Group Famagusta, or me to pay into a local organisation.

7. Join a Night Walk for Autism in London, Manchester or Bristol if you are in the UK or create your own! Watch the 2016 Night Walk video and be inspired!

8. Talk to someone on the spectrum, or their family. Or me.

9. Autism-Europe will be focusing on the theme “Break barriers together for autism – Let’s build an accessible society”. The aim of this campaign is to understand the barriers to inclusion autistic people are up against and how our society can work together to overcome and remove them. The campaign toolkit explains the idea behind the theme and outlines in detail how and when you can support the campaign in whichever way you prefer. The toolkit bring together recommendations on how you too can be part of our mission to make people more aware of these barriers, and to build momentum in pushing for their removal.

10. Tell someone April is Autism Awareness Month.

It really is that simple. Awareness does not need a voice, it needs understanding. Awareness is achieved within oneself before it can be transmitted to others.

 

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When Will We Learn?

I’m not going to write about the atrocity that was the US Election – here’s what i felt a year ago #Project324 Trump, Republicans and Disabilities, oh my.

I’m going to write about hope, the future. I’m going to remind you that you can change things, that you need to be strong in the face of racism, discrimination and unfairness. I’m going to ask you to take action, to not let this perversion become our legacy. I’m going to ask you to think about what world you want our kids to grow up in and what we can do right now to make sure they do.

Ambitious about Autism is an organisation i work with, they’ve put on projects like: #EmployMe for which I wrote –  What happens when you turn 18? UN International Day of Families for which I wrote – A letter to my autistic brother on his 18th birthday . Fun fact – I wrote this in 15 minutes and cried the whole way through, I haven’t read this since it’s been published. Maybe fun isn’t the word for it. Autism Friendly – Ambitious about Autism supported a London-based restaurant in winning the first of the National Autistic Society’s Autism Friendly Awards. Making the world Autism-Friendly Back to School – School Bells

Their latest is called #WhenWillWeLearn. The ambition is to make the ordinary possible for children and young people with autism. They provide services at schools and colleges, raise awareness and understanding and campaign for change. 

And they don’t give up. Their campaign asks you to write to your MP (if you are in the UK). Those of you outside the UK can write to your local authority, or you can write to me – I would love to forward your letter to our MPs, because it doesn’t matter where you live. A small change can resonate around the world – that’s the beauty of awareness, it doesn’t have borders. Sign up to show your support: ambitiousaboutautism.org.uk/pledge-your-support or email me.

The campaign highlights that:
80% of children with autism experience anxiety every day about attending school;
45% had been illegally denied their right to a full education;
Over 1000 parents are forced to take legal action every year to get the support their child is entitled to;
42% of classroom teachers say their training doesn’t prepare them to meet the needs of children with autism; I wrote about this here.

So, please don’t give up. Because we have made a difference already; businesses introducing schemes to train people on the spectrum like Ford, Apple, Microsoft etc; stores introducing quiet hour to accommodate autism; TV shows are introducing characters on the spectrum; theatres/cinemas are catering for autistic youth; ‘neurodiversity’ is an official term and it’s all because of all of you, reading about autism and not giving up.

15007644_10154605350205030_2088488013_oI traveled to Venice on the 3rd November and, incidentally, it was also the day that Gatwick became an Autism Friendly airport. A ceremony was held but I didn’t know about it until later when i was stuffing my face with gelato and thinking about how much Christo would love it. The airport was presented with an award by the Chief Executive of the National Autistic Society to mark the achievement. Gatwick met a range of Autism Friendly criteria to help passengers, their families and carers, it has been praised for providing clear and accessible information for passengers about the airport and the assistance available to help plan for their journey. Staff have been specially trained to help assist autistic passengers and a hidden disability lanyard system has been put in place. HOW EXCITING. I wrote about Chris at the airport here. I know, I’ve referred to my own writings a lot in this post but it just goes to show that the information is everywhere, and it’s only a click away. So, click.

It’s up to us – we have to do this, we have to write, speak, call, email, visit, shout about all the things we want and by doing it for our own, we are doing it for everyone; one step at a time. Now, more than ever, we need to unite. We need to be one and we need to make our voices heard, because they did – so why can’t we? Now more than ever, we should recognise the power or the people. Because it was people that did this, and it will be people that change it.

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The end of Chapter 3

Earlier this week I found out that i have finally passed my Legal Practice Course; an LPC is the vocational stage of training to be a solicitor that must be taken after completing a law degree and before practicing. This means that after 8 years of being a law student, I am done. I was trying to describe to my friends how happy I was to receive the news and I couldn’t find words.

If you are a regular reader, you know that this was part of my life plan. I moved away from home, I’ve been studying since 2008 and working alongside my studies to set down the cornerstones of the life Christos will have to join eventually. This last month has been a tough one. My nan was in hospital for 3 weeks. My nan, or my 75137_10150101622680030_3087748_nyiayia, is a 2-time cancer survivor, she’s worked since she was 14 and she raised us all with such love. She loves a good sing-along, a western cowboy film, she knows how to throw a good party, she loves a good beer with her lunch and a whiskey on special occasions. She looks amazing; i know I’m biased but look at her! She always takes care of herself even though she worked 16-hour days, she never said no to a customer or an ill aunt, she was never too tired to run around after her grandchildren and I’m so proud of her – I used to borrow my yiaya’s jewelry and shoes, that’s how cool my yiayia is. She’s one tough cookie. I love my yiayia, she makes the best food, the best tea, toast and jam, she makes the best cakes (she owned a confectionery), she cries every time we speak and she rubs my feet even though hers are way more tired. I love my yiayia the most though because of how she treats Christo. I talk a lot about how our family felt after the diagnosis but my nan and granddad were right there with us. They went through all the emotions, all the ups and downs. They picked us up from school, babysat, they took Christo to speech therapy, to the oxygen chamber appointments, they watched the Lion King a thousand times, they picked up after  a tantrum, they always had a stash of calming treats, they stopped singing because he doesn’t like it and they never gave up on him. She has been a support to us and to Christo for as long as he has been with us. She knows his language, his schedule and how to bribe him for kisses and hugs. Christo knows he has to respect her, he knows which buttons to push and he knows that every time he says ‘yiayia’ she is ready to give him the world. I love the way they love him because it looks like the way i love him. It’s my only consolation, knowing he is loved that much every day I am not there.

By completing the course, I’ve ticked off a big box on my preparation list for our future. It’s something I have been working on for years, it’s the one thing I’ve worked so hard on, it’s what i will base the rest of my life on. And it’s done, it’s just there now waiting to be built on – waiting for me.

The end of the LPC is the end of the first big chapter in my life. 2 years of 4000 words every 10 days, 17 exams, sleepless nights, lots of wine, and lots of tears and it’s over. I breathe a sigh of relief before I move on, i take a moment to leave this behind and digest what it all means. In my head, everything i did was a step closer to the end game – the LPC was about 150,000 steps. I can look at my brother now with confidence, with certainty that we are going to be okay. I like to think that if he knew he would be proud, I like to think that deep down he knows. I can look back to when I left him to study in Lancaster and not be struck down by guilt; because after 8 years i did what i left him for. I think of all the birthdays i missed, all the tantrums, all the times he needed me and even though i can never go back and be there, it wasn’t all in vain.

Stay tuned for Chapter 4 of Life with the Pereras.