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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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The girl with the Dora mask: 2011-2012

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I 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.

For more information: Smiling September

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

While the turmoils at home seemed to be neverending I thought that being away from it meant I was indestructible. I had started an LLM in a new city and it was intoxicating. In those years (my social years) I made friends for life, lost a few on the way but most importantly I found a way to not be me and it felt great. I was masking my sorrow with a mask no one knew about – not even me. Needless to say my social years didn’t last long – i’m a house cat at heart. So after too many jagerbombs, heartbreaks and too many late nights I buckled down, did the work and got my first masters. It felt like an accomplishment but not my own.

After this, I made the decision to stay in the UK permanently. It may sound selfish but I could never find out who I was in Cyprus; I was a child of divorce, sister to a boy with autism, wanted a career in law, but I didn’t even know basic things about myself; what food I liked, what music moved me or even how I liked to dress. Up until that point I was just faking being me trying to be the me I thought I was supposed to be.

So I cut ties with with all that, got a job and started working towards getting a training contract.

Today: I look at my brother who has lived his life so openly. No masks, no pretending – he has known who he is since the start. Who knows what mask he would be forced to wear if he was like us? What he would be forced to suppress/do just to fit in. So today, after years of mistakes and learning from my brother, i can proudly stand next to him without a mask. I don’t have peppers in my food because I don’t enjoy them, i don’t like horrors/thrillers, i prefer rain to sunshine and Pizza Hut to Dominos (that’s right), and I’d rather stay in all day and hang out with my bro (even though we annoy eachother) than go out into the world without him.

 

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Then and now: 2010

I am saying goodbye to my 20s this year and to counteract the selfish need to reflect on the last decade I 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.

For more information: Smiling September

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

Hindsight is an incredible feeling isn’t it? I look back at who I was then and I can see clearly how I got to where I am. My last decade plays like a film in front of my eyes and at centre stage is Christos because there is nothing I am more proud of in life that to be his other half. To live up to his expectations every day, to earn and keep his trust, to walk beside him in life.

It wasn’t always my priority though. Even though he was the driving force behind my decision to move to the UK to study, my teens are a blur for the most part. See,  we all have ways of getting by and mine is that I block out parts of life/the past I don’t want to remember.

I was lost, looking for meaning, love, somewhere to belong and in a constant battle between the need to be selfish and take care of me and feeling guilty for not being selfless. But with the bad there was good and I’ll try to focus on those. Through all the family drama, heartbreak and late nights that consumed my 2010 there was light.

This picture is from Halloween 2010. Because, I don’t have any other pictures of me and my brother that year. It was a selfish year and but looking back, 10 years later, it had to be. There’s a part of my heart that will always be hollow with all the moments of Christo’s life I missed out on before he outgrew us all. But like any family unit, we have to take care of ourselves before we can take care of each other – we just didn’t know back then. Mum took him to a parade in Cyprus and he dressed as Woody from Toy Story, it was one of his favourite animation films. We watched it over and over and over, and knew all the words. I remember him asking to watch it and when Sid would come up he would hide. 

This year? We get to spend the entire day together in Sri Lanka, making memories and cementing our bond. The difference is that this is a selfless year. We have both overcome our individual obstacles and experiences that weighed us down – Christos has moved to a new school and is tackling issues bigger than him or us. He has paved the way for other families of kids and adults with autism to look forward to a future which doesn’t condemn them to sit on the sidelines of a society that doesn’t have money or time to invest in their abilities.

I’m not going to lie and say it’s been smooth sailing because we had a tough day yesterday. I travelled through 5 time zones in 3 days and it took its toll. The repetition of the routine and his need for everything to be the same is exhausting at the best of times. But today, we are both rested, we have a plan and we are back on track. 

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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: 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: 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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Our Golden Hat will go on – #APD2017

It’s Autistic Pride this Sunday – 18th June 2017. In honour of the day I will be writing about different foundations from all over the world and how you can help.

“After watching A Mother’s Courage: Talking Back to Autism with my daughter, she turned to me and asked, “What if I wasn’t able to tell you I love you, mummy?”” – Kate Winslet (aka Titanic aka A-list Hollywood actress aka autism advocate).

Co-Founders Kate Winslet and Margret D. Ericsdottir met when Kate recorded the English narration for Margret’s documentary, A Mother’s Courage: Talking Back to Autism, which captured her journey to find a way for her nonverbal autistic son, Keli, to communicate. Throughout her journey she visits scientists and families all seeking  a way to get to know the person behind autism better. To get to know her son.

The Golden Hat Foundation is a non-profit organization dedicated to changing the way people on the autism spectrum are viewed by society. They focus on abilities and potential, education and career training. Long-term goals include the establishment of innovative post-high school campuses designed for people on the spectrum.

This is a great organisation to support and follow. Here is what you can do:

  • Learn more about the organisation
  • Subscribe to the monthly newsletter
  • If you are in Texas, attend one of the Meetup Groups and share your experience
  • Volunteer
  • Donate
  • Visit their blog

In July 2015 I wrote an article for Autism Daily Newscast: 5 things my brother’s Autism stole from me and the Golden Hat Foundation shared and retweeted Christos’ story.

The Golden Hat11752398_10153455833490030_5815753847288641852_n
This boy had a golden hat.

The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.

I think the great thing about The Golden Hat Foundation is that it is a partnership between two mothers, whose experiences with motherhood are exceptionally different. Yet, they come together because they are both mothers. Just like we need to come together, despite our lifestyle differences, because we are human.

Happy Autistic Pride Week!