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Covid Coping

Aren’t you distressed by this lockdown?

Imagine the distress of people who find comfort in routine, people who need the security of repetition. Eating the same meal, going to the same shop, drinking the same brand of juice or going to school. We have had a schedule in our home since Christos started using PECS – details here. I talk about it extensively and often because it is central to keeping him calm and happy. The enormous amounts of work parents put into developing their kids communication skills either with PECS or otherwise and teaching everyone to use it is inconceivable – you can read about it on this blog or visit the web pages for autism organisations who share stories. (You can’t spell autism without family)

An autism family spends most of their lives educating at home because even though they may go to school and do homework, they can only get to the point of going to school and doing homework if the family has paved the way. They can only continue to grow, if the family keeps putting down those blue bricks and creating paths for them to take. You don’t understand the time and effort needed  our children’s education and every day life. The determination of family and the incredible teachers who contributed to Christos’ education created this 22 year old man who reads, writes, tells time, does math in his head, teaches himself (and us) to use technology and loves (with a bit of encouragement from us) learning new things (if it’s on the daily schedule).

Imagine the distress of those parents who have to home-school children who would otherwise be taught in a special unit or by a speech therapist. Think of parents who have both neurotypical and neurodiverse kids, who aren’t working at the moment, who can’t afford new toys or resources to occupy or educate their own for another 3 weeks. Parent’s who have to reiterate different schedules to persons with autism who don’t understand this sudden unexpected change and disruption to everyday life. By the way, if you or someone you know if having a hard time, there is a lot of information on coronavirus and resources that may help here

Even though we are all isolating, it is important to remember that some people are more at risk of not surviving social isolation or not recovering from it. Now, more than ever we need to think of others and, while staying home, find safe ways to help others who may be struggling more than you. There are so many ways to be kind – calling, texting, delivering supplies, donating to your local charity, giving away toys or books you won’t use etc.

My plan is to raise money by selling paintings I have painted over the last few years. I am raising money for the SMILE project which operates in Famagusta, Cyprus because “the Cypriot government, while responsible in making education accessible and available for all, has failed to …provide establishments which can cater to adults with autism living in the Cypriot society. Hence, it is left to autism societies, organisations and groups to create their own places of education and development of character.”

But what happens to areas where such an organisation doesn’t exist? Or it doesn’t have the funds? What happens when these schools close because of Covid-19 but some parents, who aren’t working due to the pandemic, still have to pay utilities and rent to keep the school.

“Every person involved in the SMILE project was once just like you. None of us knew autism until it burst into our lives. But we started learning, growing, getting stronger and stumbling the whole way here – to this moment when action was needed yet again. So here we are, getting back up and marching forward, hoping that you will be a helping hand (or smile) by our side” – Smiling September

“SMILE was created with determination to establish a safe, educational space for our kids where the state has failed. It is [operating]…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” – 21 and Atypical: The SMILE Project

So, pick a painting you like and make us an offer. These are difficult times, so it’s up to you to make a choice and donate directly to the school http://www.autismsupportfamagusta.com/donate . I will post the painting to you on the weekend after you order it.

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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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My hopes for you and me

My 20s were full of love, laughter, crying, drama, fights, loses, wins, deal breakers, trips, transitions, degrees, decisions, heartbreaks, booze, dreams and so much more. Sometimes I wonder what your 20 would have been like if you were neurotypical. I wonder if we would still be a family, how close we would be and if I82233631_2531887710466115_4314041005243367424_n would worry about you. Would we hang out? Send cards? Meet on special occasions? Would our lives depend on each others?

Probably no. But for better or for worse, our lives are intertwined. We are close, I worry about you, we hang out, send cards and meet on special occasions. All these banal things take a completely different meaning but that meaning is ours – yours and mine.

To be honest, I am nowhere near where I thought I would be at 30 but I know where I’m going. I know where home is. I can make plans and dream big – I’m doing better. I spent my 20s chasing goals and worrying that I didn’t belong to one place or have a home but I’ve realised that anywhere with people is home – I have so many homes and that’s okay. You taught me that. In the last decade you have moved to 7 different homes, changed 3 schools and you were okay.

In my 30s I have all I need and maybe that was the gold I was so desperate to find – not earning enough to support us both or having a high-stakes powerhouse job but being a powerhouse and strong enough to be okay with not being okay, being irresponsible to learn responsibility, being broken to become resourceful and being miserable to appreciating happiness.

My hopes for you are that you are happy where you are, with the people you are with. I hope that when you look at yourself you love you, and that when you don’t you can lean back into our love for you. I hope you continue living your life knowing that there are people around you who know you and can represent you and keep you safe. In return, I promise to be safe so that you always have a voice. I promise to live the life I have at this home away from you and always come home to you – for all the decades in my life and yours and beyond.

Thank you to everyone who has donated to Autism Support Famagusta over the last few weeks. I am aware of some tech issues but even if you were not able to donate, your intentions mean that you can out there instead and spread what you’ve learned like a kind of autism awareness plague.

To donate: http://www.autismsupportfamagusta.com/donate

Thank you.

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Hear me roar (about autism): 2013-2014

I am saying goodbye to my 20s this year and will be fundraising for the Smile Project by Autism Support Famagusta. Smile is the first and only day care centre for adults with autism in Famagusta, Cyprus – and it hosts my brother. 

To donate please follow this link and use the hashtag #30smiles

After my graduation I was a bit lost. I didn’t know if I wanted to pursue a career in law, I isolated my self and spent most of my days on the couch or in bed. I had decided not to return home (to Cyprus) all the pursuit of happiness and love. Only, after three years of living away from home I still wasn’t any wiser re the happiness and completely lost about the love bit. One gloomy day, I was re re watching an old series when an episode about writing spoke to me. Coincidentally, I had a little run-in with blog writing at a temp job where I wrote a post about unemployment and the woes of being a law graduate in the state of today’s economy. The process, as well as the response, made me think this was destiny (I believed in destiny when I was 22, just like you did). So, I got out of bed and did some research. Ok I sat up in bed and did some research.

The blog tips I got from various internet sources, sitcoms and friends were “Be yourself”, “Spell check” and “Pick a theme, write about something you’re passionate about” – so what was I passionate about? Looking back now, it was so obvious and I don’t know why it took that long to find the answer. I was still learning about myself and crawling my way out of my own personal dark ages for the previous ten years so I had to dig deep and shed all the layers and masks I had on. One night, I was Skyping home and Christos was being a tiger on camera. After that I spoke to dad about the issues he was having at school. I hung up, cried and realised I’m passionate about him and his future. Destiny (i thought) struck again when I read a guest blog article on BBC about how autistic children are presented with special jargon phrases. Mark Neary captured it completely; it made me laugh out loud and at the same time gave me the courage to create this page and write my first post .

199123_10150167935090030_1697873_n (1)The next two years where a blur. The blog took off in a way that I never expected and so did I. I had so much to say, share, relive, consider, reflect on and learn. Writing all this down made me cry every time. Suddenly, in two years I went from re re watching series in bed and avoiding my feelings to advocating for rights in Canada, Australia, France, the UK and writing articles about us in Greek, writing to MPs and governments around the world. I was approached by autism charities, organisations, radio stations, TV stations about my story (links to articles under Published tab on main page). There was no hiding anymore, no masks.

Writing became a regular thing. It got me out of bed, it made me think, it made me angry, it made me change things and perceptions around me. I had found my voice and the roar I had been suppressing was bursting out of me. My life was filled with people from all around the world who were going through the same thing I was, who wanted guidance, help or advice. People who had just gotten a diagnosis, or who didn’t know which therapy to go for, or parents who worried about how the siblings of the kid with autism would be affected. Writing about autism brought me the happiness I was looking for and it made me look at me in a different way. I knew so much more than I gave myself credit for. I had so much to give and the sadness and anger I felt transformed into inspiration and were channelled into this blog – which made a difference in other peoples’ lives but, perhaps more importantly it mended my ties with my family, and myself. I learned so much about myself through writing about Christos – yet another gift he has given me.

I published 52 posts on the blog in 2013/2014 and, today, this is my 201st post. On the second day of 2020 I won’t set any resolutions because it doesn’t matter what you think you want to do or what is expected of you – what you are is already you. So I am grateful for transformation my brother inspired in the last 21 years, I am thankful for all the friends we have around the world through this blog and I am more inspired than ever to continue advocating for this cause.

I hope you will join me.

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Smiling September

I think September is a great month because it starts off the end of a calendar year. While it signals the end of summer, the beginning of autumn is the start of a new school year, the countdown to many widely celebrated holidays, apple pies, leaves turning all sorts of beautiful colours and in general it is a preparation for new beginnings.

Having just finished yet another arrivals week at my place of work, I caught myself being a bit resentful this year. So many children are starting school, university, college etc because the right to education is reflected in international law in Article 26 of the Universal Declaration of Human Rights and Articles 13 and 14 of the International Covenant on Economic, Social and Cultural Rights. Article 26 states:

“Everyone has the right to education. Education shall be free, at least in the elementary and fundamental stages. Elementary education shall be compulsory. Technical and professional education shall be made generally available and higher education shall be equally accessible to all on the basis of merit. Education shall be directed to the full development of the human personality and to the strengthening of respect for human rights and fundamental freedoms.”

The Cypriot government, while responsible in making education accessible and available for all, has failed to understand autism and to provide establishments which can cater to adults with autism living in the Cypriot society. Hence, it is left to autism societies, organisations and groups to create their own places of education and development of character. But what happens to areas where such an organisation doesn’t exist? Or it doesn’t have the funds?

Adults with autism over 21 years old in the Famagusta area are left to their own (and their family’s) devices. Parents are faced with an impossible choice of whether to provide privately funded development opportunities and care, or to cease education  and/or to admit these persons to centres which bear a label stating “for people with disabilities”. Such abstract grouping is not only impractical but it is a disadvantage to all persons – despite abilities. While we are calling for a specialised unit/centre for adults with autism it is important to understand that the aim is not segregation – it is safe specialisation. So, how does the Cypriot government expect the same centres that houses for the elderly to cater for Downs, autism and learning disabilities? Or for parents and family to arrange transfer to the nearest autism facility without additional funds while providing for the family?

Ignorance – is why our kids are not included in the planning stages for education, social care etc – the inability and unwillingness to understanding these individuals and the arrogance in not seeing them as individuals.

Grouping them together and imposing a further financial burden onto the families is a manifestation of how we mistreat people with abilities that do not “fit” into the preconceived notions of “mainstream”. Denying them inclusivity from the moment they don’t meet the made up milestones that dictate our education system is only the beginning. Our society continues to outcast them in employment, relationships, friendships, social ‘norms’ and  education. This is how the SMILE Project was born.

The Autism Support Famagusta organisation was formed by parents and friends of people with Autism Spectrum Conditions in the Famagusta area. Our kids grew up and had nowhere to go. So we stepped up and created a place for them in a world that tells them they don’t have one unless they comply. The members of our organisation work tirelessly, incessantly and face every obstacle because they want to provide a safe place for their children where they can grow, develop their character and claim their rights just like every one else. Thankfully there are people, businesses and municipalities in Cyprus that contribute to our work, keep us going and support us. There are amazing people that apply to spend time and educate our kids so that they can cultivate their qualities, skills and provide them with new experiences. Every person involved in the SMILE project was once just like you. None of us knew autism until it burst into our lives. But we started learning, growing, getting stronger and stumbling the whole way here – to this moment when action was needed yet again. So here we are, getting back up and marching forward, hoping that you will be a helping hand (or smile) by our side. 69027189_359207548341415_839973041910841344_n

This September remember that the things we take for granted aren’t granted to everyone. All over the world there are people that have to fight for the right to education either because of lack of funding, lack of space, materials or study requirements. All over the world the reason people are deprived of this right is because of their governments. What can you do? Simply learn about us, our organisation or a society near you. It may be that you know a person with autism in your school , your work, your network, your neighbourhood so find them and talk about it. Open up your world to include others and be kind because knowledge is power. If you want to do more you can donate, send supplies and even! take a volunteering holiday and help organisations build schools in different places around the world. There is always something we can do. Always.

Throughout autumn term I will write more and more about the SMILE project so that we can show you what we are doing and how we are giving our kids education and support that they should have had.

Our page for donations can be found 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 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: Stephanos

young stephStephanos was born on 21.06.1998. His mum remembers his first words being ‘Mama Papa’ before he was even 1 year old. His 5 older siblings showered him with love because he was the baby, the centre of attention. They were all enchanted by that big smile. Just like any other infant he ate a variety of fruit jars, fruit cremes and mashed potatoes and carrots, packed full of flavour and smells.

At 11 months, he stopped reacting to his name. He stopped eating colourful food and stuck to Cerelac, biscuits and Farley’s rusks. He closed himself off, deaf to his family’s calls for affection. They remember it as him regressing instead of progressing. He stopped saying ‘mama papa’. He started stimming – hands in front of eyes, flapping hands, tiptoeing and making sure all his trains and cars were in the right order.

At 2 and a half years old he was diagnosed with ASD.

Stephanos’ family quickly jumped into action. They tried most of the alternative therapies for autism as well as speech therapy, occupational therapy, hyperbaric oxygen chamber therapy, Applied Behavioral Analysis, one to one teaching and of course used PECS. With PECS his family started communicating with him again. With music therapy they got to see that smile again. With speech therapy his speech resurfaced. Little by little, they got an inch of him back at a time.

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With the support of his big, strong family Stephanos was able to express his artistic side. Nowadays, he has an art studio next to his home where he takes daily lessons. He loves painting horses, having started with a basic drawing and slowly adding the horse mane and the tail to eventually win an Erasmus award for one of his paintings. He also has music sessions three times a week and he loves it! In fact, he knows most of the Disney songs off by heart and he loves Grease the film – and I mean, who wouldn’t? His mum describes to us how on school days they have to play Peter Pan, El Dorado and Robin Hood in the morning, have a little dance and roll and only then are they ready to go to school and start the day.

Even through his verbal communication has declined over the years, Stephanos is a major part of the Prodromou familia. He makes them all laugh, he makes them proud with his art, he overwhelms them with pride when he simply picks up a piece of cheese from the fridge and makes himself a mini sandwich. Stephanos’ own milestones and accomplishments are the product of a long and difficult journey.

Through his ups and downs, he has grown into a thoughtful, caring, compassionate and talented adult who approaches you when you are upset and gets excited when his siblings visit. Perhaps the greatest thing Stephanos has done is inspire the people around him. His family, friends, teachers and other kids get to see his progress and have hope.  Stephanos’ story gives hope to newly diagnosed families that it will get better and even if it doesn’t there is a group of people who will stand by them. He has inspired his parents and my parents to take action and to speak up for him and for all the autism families who need it.

This is just the tip of the iceberg when getting to know Stephanos. I’ll be telling you all about what he likes, dislikes, his calming routines and even his bad days – because who doesn’t have one of those once in a while? We’ll dive into a beautiful, atypical friendship between two boys who accept, acknowledge and respect each other. For example, Stephanos does not like it if you touch your own face or head (same for Christos), yet! somehow they don’t bat an eye lid when one of them does it. Boys eh!

#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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An autism sister watching Atypical Season 2, Episodes 3-10

It took me a while to get through this season because it is so emotionally charged. It’s a bit too relatable for me.

Ultimately, I want you to watch it and see these 6 things.

1: In episode 3, Sam walks out of his class at some point due to sensory overload. The way he walks out reminded me of my brother. The eyes, the mouth twitching, the hand shaking, the urgency in his step. He walks out of that class as if his life depended on it. Sam has autism spectrum disorder. Keir Gilchrist, the actor, does not. Creating a single, accurate portrayal of living with ASD is impossible. Therefore, to create something relatable to as many people as you can you endeavour to make connections through different interpretations of ASD. It is a colossal credit to the people behind Atypical that Keir was able to remind little old me of my autistic brother in that scene. You can hear what he has to say about the show here, at Autfest 2018 hosted by Autism Society of America. In the same breath, we are introduced to an autism group with a range of individuals. These actors are all on the spectrum in real life. Again, they do not represent the entire autism community but they are there, on the screen with their own traits teaching all of us that autism has as many faces as the ‘normal’ cult. We see that they are honest, they have insecurities we can relate to and they care and look out for each other.

2: Doug and Elsa 44333001_353571598538233_179029183383470080_nare encouraged to promote awareness after an incident with Sam. I don’t want to state the obvious but that’s what i’m doing with this blog, that what we are going with the autism support group in Cyprus, that’s what my dad does with hiring people on the spectrum to work with. It’s not me being me when I say that our people are inspiring. As soon as they waltz into our lives they start tearing down walls, they press a reset button and draw a line between who we were and who we are meant to be. They push us out of our box, and pull us into unknown territory. They open our eyes and give us the gift of purpose.

3: Bullying. We experience Sam’s school life without Casey and although it is heartbreaking to see, watch and relate to we are also reminded that people outside our family have our kids back as well. It’s daunting for an autism family to let go and not be in control. It is nearly impossible to trust when it comes to them because of how cruel our society can be to anyone who is not neurotypical. We are reminded that they will have friends and foes wherever they go, and that their friends are capable of loving them and defending them as ferociously as we do. We experience more of the friendship between Zahid and Sam in this season. It is refreshing to see a portrayal of non-family members and how attuned they are to the needs of the person on the spectrum. It demonstrates the impact a neurodiverse person can have on everyone around them. Zahid gives as good as he takes in this friendship and when he feels he’s out of his league he calls in the big guns – Casey.

4: Sam explains that autism is not an accomplishment. It is not something he worked towards or something he has overcome. For neurotypicals it’s easy to think of someone’s progress as ‘overcoming’ their autism but that’s not an accurate observation or conclusion to make. Autism is something he was born with. Autism it’s part of his physical, genetic, cognitive and behavioural development as a person. He can’t overcome it, because he is it. To Sam, autism is like having fingers and toes. Think of it this way: Some people’s toes are long, some toes are longer than others, some are tiny. Some fingers bend to the left or the right, some have big nail  surfaces some barely have any. No two toes or fingers in the world are the same which means that there are 7.6 billion different pairs of toes in the world. Some people can bend make different shapes with their fingers, some can paint with their toes. Some are ambidextrous, some don’t have all ten.  Who’s to say what a persons abilities are based on their fingers and toes?

5: Casey – Which I talk about extensively here.

6: It is painfully obvious how immense and substantial the research was when the concept of Atypical was cooked up.  The crew, the directors, the writers and the actors show us in every single episode that they are trying to understand all the hundreds of layers that exist beneath the surface of an autism family. Every member is their own person. They don’t have the answers, they don’t do everything right because an autism diagnosis doesn’t come with a manual. Their characters are not superficially drawn up scripts that react to autism. Not all their decisions or actions relate to the person with autism. Each member is a complex human being, who struggles with their insecurities, their past, their future, their friendships/relationships, and autism. They are deeply relatable and painfully real.

Bonus tip: It’s so so worth watching.