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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: Happy Birthday Steph🍾🍰

Stephanos is 21 years old today!

19358841_10154713771921238_1693404057_oJust like his bestie, he won’t be preoccupied with this day. His birthday will serve as a reminder to his family of how far he has come and how many Steph milestones he has reached. A birthday is too typical to be atypical like our boys. Stephanos won’t get excited about presents, or friends coming over for a party. His phone won’t be beeping with Happy Birthday notifications and he won’t feel the social pressure we feel when we reach a certain age.

Stephanos doesn’t live to please social norms, or to meet society’s expectations 27752278_10155332857716238_3880961810554679579_nof what a 21 year old ‘should’ do. As his mother has so beautifully put it “He may not accomplish University, marriage, or having children like in a “ typical ” world but he has been totally loved and supported by family , friends, schooling and society. I am positive if he could speak he would confirm in a verbal manner how blessed he is on this subject. Autism is part of society nowadays and we all do our “ bit” to accept and embrace because after all we are just human. We have all learned that a “ typical” world isn’t always for everyone. Society has its beautiful exceptions and Stephanos is an example”.

Stephanos lives to break the ‘norms’, exceed expectations, inspire and pave the way to a new and more inclusive world. He was the inspiration for so many actions taken by his family that have shaped and given meaning to my life. He inspired our group, the special unit in Ayia Napa, the summer schools for children with autism in our area and eventually the SMILE project. In a world where everyone wants to be an individual, Stephanos is the most inspiring of them all. Because Stephanos has allowed so many others to be themselves, to be individuals and to be exceptions just by being himself.

Happy birthday Steph. Thank you for inspiring my family, for opening doors for us we never thought possible. Thank you for being my brother’s friend.

Stephanos’ birthday closes my 21 and Atypical series (although I will be referring back to it with updates from the boys). So join me in wishing him a very happy birthday.

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21 and Atypical: The SMILE Project

64582350_2087828768006568_1085529915794653184_oThe SMILE Project is a culmination of the fears, determination and strength of the autism families in the Famagusta area in Cyprus. It was born out of fear of what will happen to our adults with autism who require care. It was created with determination to establish a safe, educational space for our kids where the state has failed. It is opening today because of the fearlessness and strength of those involved. Those who have done the manual work, donating time and money to ensure that our gentle giants do not suffer the consequences of a state that doesn’t understand them. Today, 19th June at 7:30pm in Paralimni, we open our doors to 3 young adults who pave the way to a better future for all adults with autism in Cyprus.

The Smile Project will be based in the Famagusta Area (Paralimni) and will provide day-care services for young autistic adults of 21 years old and over. 64912747_2382131665339646_8103174948933074944_nIn every autism family, there comes that dreaded time where you have to think of what’s next. Our families and Autism Support Famagusta powered through obstacles, lack of funding and the absence of support to imagine what would happen after State school comes to an end. We, the families, know that there is no provision or services with specialised staffing for young adults with autism in our area – so we needed to act.

The future of our children is a concern for all parents.
Who will take care of them?
Where will he/she live?
Will they be safe and have a quality of life when we are no longer here?

The SMILE project is a massive achievement and a stepping stone. The ultimate goal will be a 24-hour care centre with overnight stay but also a day care provision for adults on the autism spectrum. The centre will offer sensory sensitive activities tailored to each child, music therapy, speech therapy, arts and crafts etc.

Our children’s learning will not stop. We are working together towards the same goal which is to provide support to families with children on the autism spectrum.

As a group, we are blessed to have had the support of the Municipality of Ayia Napa, the Mayor, local councillors and staff every step of the way. We are hopeful and confident that other Municipalities in Cyprus will embrace and support us to pave the way to a brighter future for autism in our beautiful island.

So.. join us – all you have to do is smile.

If you want to help:

Donate here https://www.autismsupportfamagusta.com/donate-index-impact

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21 and Atypical: Steph’s Got Talent

You will remember that Stephanos loves the arts. Playing music, singing, drawing, painting, crafts etc. He uses his talent to express words and emotions in a different way – like a true artist!

Over the years, he has taken major steps in improving his skills through weekly lessons and “he will improve much more as he grows and has the potential for much more that what we give him credit for” his mum reminds us. He loves painting horses, having started with a basic drawing of the outline and then moved on to slowly adding the horse mane, the tail to eventually winning an Erasmus award for one of his paintings.

60342861_295902934633404_3523312190037688320_nA friend of the family was part of ESIPP and Erasmus: ESIPP stands for Equality and Social Inclusion Through Positive Parenting and aims to provide parents with accurate information, effective practical strategies and improving outcomes for individuals with autism and their families. Parental autism education has not been available everywhere in Europe and through the work undertaken and the findings in the project ESIPP has made key recommendations for policy makers. The ESIPP project was established to develop a locally appropriate Parent Education Programme (PEP) for families living with autism in three south-east European countries (Croatia, Cyprus and the North Macedonia). The project is led by the University of Northampton and includes eight other partner organisations from across Europe.

ESIPP asked for design submissions for the project logo. So the society rounded up about 15 paintings from the Famagusta area. The Autism Famagusta Support society runs a yearly summer school in Ayia Napa where the children who attend undertake a range of activities – and they always keep kids work. Stephanos was one of the first for Cyprus.

Nowadays, he has an art studio next to his home where he takes daily lessons and showcases his art. At School, Stephanos loves art class and creating things in woodworking lessons. While the equipment was usually left to be handled by the teachers, a couple of months ago Stephano’s mum was sent photos of his latest woodwork creations from school where he actually put together this wood placemat with hot glue alone.

Stephanos also paints most of the clay money boxes that we decorate and sell at events.

 

Currently, he is working on creating occasion cards as another way to promote Autism Support Famagusta, autism awareness and earn money from selling cards created with Stephano’s input. I’m already putting in my order so all you summer babies that I love so much will be getting a Steph card! While he doesn’t come up with the occasion designs all alone, he follows instructions and does all the drawing and colouring.

Every single one of you express yourselves in a different way – with emotions, physical strength, volume, writing, activism. Which means that, at the end of the day, the only thing we have in common is that we are all different.

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You can donate to our society here.

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21 and Atypical: The stories we don’t tell

I remember so many 2am’s almost drifting into sleep when I would hear Christos whisper “Oh” and wait for me to repeat it. If i didn’ respond he would climb int bed with me until I did. Sometimes I didn’t use the right volume, tone or accent so he repeated it until I did, all night and as long as he wasn’t asleep himself.  By the time 6am came around and all three of us struggled to put his socks on, the right way. They need to be put on perfectly, if not you start again. If you touch the wrong spot, or accidentally stroke his ankle, toe at any point you have to start again. If you tickle him or give him an inadvertent ‘Lets go’ pat, you start again. If you don’t start at the right end, if both sides aren’t moving up at the same pace, if its too high or too low, you start again, you start again, you start again. No loose ends, no marks, no holes otherwise you start again. Even if its not visible, is it a new pair? Are you sure they’re a pair? Start again, just in case. Then come the shoes. Something’s not right; is it the shoes or the socks? Take everything off and start again. By the time we were ready for school we had already lived an entire working day.

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Stephanos, while in bed at night will hear his mum – or whoever is downstairs – clear their throat and he will run down the stairs, go straight outsidem, lie flat on the ground in the garden and sing a song until he is not upset and he is ready to go back to bed. Just like anyone of us the boys have characters of their own. They get angry when people don’t understand them, when a sound is so loud or a light is so bright that it interferes with their welbeing – wouldn’t you? Sometimes, they shout, scream and lose control – don’t you? The difference is that you can communicate your frustration, you can talk about it and find ways forward.

But what if you couldn’t?

Christos’ triggers could have been anything when he was growing up. We were all learning, trying to get to know this ball of fire that was gifted to us. Sometimes the consequence was a million ‘Ohs’, sometimes it was scratching at a mosquito bite until it was raw. I remember his arms, legs and face bear the scars of his incessant picking at every bit of his skin and tearing off any protection we tried to offer. He twisted his arm, legs and head hair to the point of pulling it off. Other times, he would be hitting his head with a closed fist so hard it left a mark, punching his arms and legs while clenching his jaw in frustration to whatever it was we had done wrong. What could we do? He was obsessed with every little spot on him, us, clothes items around the house. We would wipe and wipe and wipe until our hands we sore but whatever it was he could see was still there. When he became a teenager his frustration grew, and so did he. He is 6ft something and 90kg, he overshadows me at 5.2ft (and whatever weight I am depending on the year) and the rest of our family, teachers, friends. He would throw anything that was in his hand. I remember him once throwing his school bag over a tall bush and into the middle of the road. I remember him squeezing my fingers in his palm until I cried or squeezing my nans arm until he got yelled at by mum. He dug his nails so hard into his own skin that it bled and then he would cry.

At 13, Stephanos broke a window in his home. His injuries were so bad that he needed surgery. The next day, he woke up in pain, disorientated, and with stitches. He ripped them off during his meltdown despite his family’s best and desperate efforts to help. His self-harm started during his puberty. He used a closed fist to hit the side of his face so hard that he caused the retina in his eye to detach. His family lived with his rage and self-harm every day for years, this had become commonplace. He didn’t communicate to say something felt off but one day his mum noticed a whiteness in his eye and took him to the doctor who confirmed that Stephanos is blind in one eye. To help control his outbursts, his family used medication to calm him down but they say they never got to the root of the aggression, which peaked at 16/7 years old. Was it pain? Was it sensory? All they know was that they felt lost.

The families all feel guilt for not doing enough and for any harm the boys inflict on themselves, for every behaviour, every sound or scream. Not only are they judged and stared at for every atypical behaviour, they judge themselves always striving to do and give more. What parent doesn’t feel that? Our parent’s stood up, against all odds, in a society that didn’t even know the word ‘autism’ and created functioning, well-behaved adults who understand, laugh and love. What were you like as a teenager? And if you weren’t taught to refrain yourselves would you know how to?

Sensory sensitivity can be a real struggle. We could lie and say we are used to it after 20 years but it’s still frustrating and I still get annoyed and fight with Christos. The only advice that exists is keep at it, you’ll get it right at some point. It’s not their fault, and it sure isn’t your fault. We don’t understand what they see, hear or feel and that is in no way your fault. To everyone else who doesn’t live with autism – sometimes we don’t even hear the screaming because we live in a ball of scream. Other times, we don’t react to the hitting or pulling or scratching or throwing because we live in a world where silence is not the typical. Once the 100th storm of the day has passed, Stephanos’ calming depends on which behaviour has been triggered. He may go lie down by the front door, run to the back of the house, sing a song and stim with his index finger or stay flat down reciting a song. He will shred flowers, grass and weeds through his fingers, at day or night and for hours. He goes back in the house, he smiles and suddenly the slate is wiped. You have the strength to take on another 7 storms. Once the millionth ‘Oh’ has been said, Christos will just repeat our names over and over until we look like we are happy. He will shower us with cuddles and make us apologise for what we did to cause it. He will laugh until we laugh and he will cry if we cry. He will apologise and smile. Suddenly my fingers don’t hurt anymore and his kissy face makes it all ok.

So what happens when we aren’t there? Where will these reactions be housed? Where 11165285_10206036337501718_7756282778690047842_nwill they find forgiveness? How will they be understood? How do you size them up, find what they need and keep them safe? In Cyprus, in our case, the answer is to create something our government doesn’t offer – or can’t offer quickly enough. We work to find ways to fund high quality facilities which are based on ethical and inspiring opportunities for children and young adults with autism in the Famagusta area. To recruit and ensure that their education and development doesn’t stop just because being ‘typical’ means you leave school at 18. The members of the Autism Support Famagusta charity work all day, take care of their family and rack their brains to facilitate activities and growth based on individual interests and skills. Two of the boys going into this home will be Christos and Stephanos will you help?

The stories we don’t tell are the stories where we are all to blame for not making this world a world we can all live, grow and be in. They are stories in which our pursuit for comfortable and easy conversations are depriving young adults their future. They are the stories in which we are the villains for not caring enough because it’s not our ‘problem’. Christos and Stephanos hide from the Disney villains on the TV and they turn the villains around them to warriors. Which one are you? And what will you do this April, for autism awareness month, to make sure everyone has a place in this world? Until every last piece of the puzzle fits?

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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?