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100 posts

This is the 100th post.

It won’t be a sob story, it will be random facts about Christo:

311028_10150465974095030_728517636_nHe sleeps with his knees up and one foot resting on the other.

He only lets the top of his drink touch his mouth when he sips – so he doesn’t gulp he just sort of purses his lips and sucks in bits of his drink with a ton of air – it makes a delightful sound. He also does this with soup.

When he was younger he used to be covered in scars, because if he got a scratch, a mosquito bite or anything of the sort he would pick on it and bleed.

He fell off my piano stool and cut open his lip – he has a tiny scar where he needed stitcheIMG_7017s.

He likes honey in his tea.

Ever since he was little I would
chase him up the stairs because it freaked him out a bit and it made me laugh. Every time he is walking up stairs and I am behind he wants me to chase him.

His favourite song now is ‘Take Me To Church’.

His eyelashes are so long they touch his eyebrows.

He is very, very ticklish.

He hates the dark and screams Home Alone-style if the lights are off.

Way back when he was shorter and smaller than me, I used to give him piggie-back rides – he loved it, he called me his horse.

He’s funny.

 When I ask him if he knows how much I love him he spreads his arms wide and says “Toso” (this much).

When dad asks him who the best son in the world is he says “Christos”.

When nan asks him if he knows how much she loves him, he says “os ton ourano” (to the sky).

When he kisses me he gives me 6-7 kisses in a row because he knows I would have asked for more, so he gets it out of the way in one go.

I don’t know how to explain it but he is so much more than his Autism. Yes, he doesn’t speak clearly but he’s funny; he has humour, fears, doubts, love. Just because he doesn’t speak clearly doesn’t mean he cannot feel. It doesn’t mean he cannot empathise. It doesn’t mean he cannot listen.
I started this blog on July 29th 2013. I never thought anyone would ever look at it because, come on, blogging was so 2009.

100 posts later we’ve had 7 articles published.

2 years later Christos’ stories have been shared with over 100,000 people from around the world.

Hundreds of new connections know something new about Autism, about Christos and keep in touch, sharing stories, ideas and concerns.

    Lots of XO – D

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The time someone asked me if I had permission

While promoting the blog I share it with a lot of organisations and groups of people from all over the world.

When I decided to do the ‘Tis the holiday season’ video series in July, I got a message from a person which has stayed with me since.

They asked: “Does Christos get any say in his “behaviors” being put up on the internet for autism awareness?”

Ouch. At first I was like, yeah he does. Then I read the question again and the words ‘any say’ and the quotes on behaviours hit me – hard. It’s easy to write about Christo, and it’s easy to share personal stories but I never thought of it this way. The words ‘any say’ tied my stomach in a knot, it made me so mad and sad that I had possibly given off the vibe that I am doing this for any other reason other than the well-being of my brother and the guarantee of a happy and secure future for him. Or that I do this for myself.

Not a day goes past that I don’t think of this question.

I write the blog, post the videos and use personal information about my family, Christos and myself for Autism awareness. I grew up in a small town/island and we faced a lot of problems growing up with a ‘foreign’ dad and a ‘disabled’ brother (as the others called them). However, my family has always been strong, and we have always fought for our wellbeing as well as the wellbeing of those around us. I feel that the problem of how Autism is perceived – being naughty or weird children – needs to be addressed within mine and my family’s lifetime so that i can ensure that my brother gets to live his life as happy as possible in case I am not here to make it happen.

My aim in writing the blog as well as posting the 10 second videos is to give the world a glimpse into the ups and downs of life with Autism. Of course, taking into consideration that there is such a big spectrum of behaviours that I can only afford to show Christos’ attitude. However, I have always said I do not speak for the community, i speak for my family. Christos gets stared at, people shield their children when he is around, and some even yell at him to calm down. My hope is that when someone watches this video, or reads this blog next time they see someone like Christo they will handle the situation differently and that will make someone’s day better.

Unfortunately, I cannot ask Christos for his permission to share information on the blog or to share the videos. That’s one of the issues we have with Christos and I am sure others on the spectrum, that they cannot grasp concepts like freedom, permission etc. However, I have permission from his legal guardians, our parents who are also involved in raising awareness, to write and share this blog and videos.

I believe, personally, that one cannot preach awareness without putting ones soul into it.

And he is my soul, my world and I would never do, or post anything which would have a negative impact on my brother’s life or the perception of autism by society. What I write is the truth, a biased truth because I cannot separate my words from my immense love for him, but I try to show a reality different from others because you cannot ask for awareness without giving something to be aware of. Furthermore, freedom of expression and the wonder of the internet allows me to speak and share information and experiences with parents and siblings from Canada, Australia, the UK, India, Kenya and many other parts of the world. I get to share recipes and share experiences as well as give and receive the comfort of knowing that we are not alone on this journey. It also allows people that thought Autism was one thing to contact me and say that the video or the blog made them look and learn about Autism.

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At the end of the day that is what we want – one person to learn one new thing about Autism.

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A flight to remember

I was flying from Gatwick to Cyprus in July.

I was sat next to two boys, I think they were brothers. One of the boys lookedIMG_6963
older and had a disability. He could speak but, like my Christo, I realised you had to live with him to know exactly what he needed. I knew right away how stressed this brother must have been – he had a big bag, he had to help his brother sit down, fasten his seatbelt and keep him occupied for the flight; 4hrs.
I cannot describe how amazing this boy was to his brother (or other relative); that kind of love and devotion is only found in family. It was small things – like he had to give him water during take off and landing. He had to get up and get his food from the bag and feed him, he made sure to feed him first and then eat himself, he made sure to give him water. When he needed to use the facilities the brother would shoot up in an instant. It’s this little surge of panic you get when the person you are responsible for asks for something; I felt it too every time they got up. He would walk him over and wait, help him dress himself and walk him back, sit him down, fasten his seatbelt and let out a tiny little sigh of relief; and I did too.

I wanted to offer to help, but he was so in control. If it was me, and someone offered their help I would just say ‘thank you but we are okay’. It is lovely for people to offer but when you’re in the zone, it’s difficult to let others in on it; you’re in control and it’s all okay. So, I sat there photo 1with my book and gave him space. He knew where everything was, he was organised, he was alert, he was being a brother. I didn’t speak to them, or ask any questions because in this kind of situation you just need to be able to focus without worrying about others. Every second of that flight I had to remind myself not to get involved, because if it was me I would appreciate someone being understanding. Every time he asked for something I would have to hold myself back, and when the brother had to use the facilities himself he sort of told his brother to sit still. It took everything I had to not get involved; while the brother was gone the other drank his tea, which I thought was hilarious because that’s exactly what Christos would do. He just sat there, like he was asked to do, drank his brothers tea and put everything back before the other brother appeared.

When he wanted to sleep his brother made sure he was comfortable enough and didn’t shut his eyes until he knew his brother was asleep. On landing, we smiled, exchanged pleasantries and went our separate ways. The entire flight I probably only read a couple of pages of my book. It was so hard to not be fascinated by this boy – who couldn’t have been more than 20 – who was so responsible, so in the zone, so in control. It was comforting to see another sibling in action. It was inspiring the way he handled himself; after all it isn’t something new to him, it’s embedded in his mannerisms and the way he acts.

Not participating can be just as comforting for a family, as you asking questions and offering help. Sometimes the biggest help is staying out of it and letting the family do what they do best – take care of their loved ones – without staring.

Sometimes understanding is the biggest comfort you can give to a stranger.

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The Lists – Camping

Mum has taken up beach camping recently and when I was in Cyprus we were discussing whether it would be plausible to take Christos camping. When you live with Autism you acquire one very specific skill; whatever situation you are given you can name at least 10 things that can go wrong in under a minute.

So here is a list of all the things we thought of that might go wrong at camping:

  1. No electricity – means no game boy because he likes the game boy to be pugged in when he plays. It means no 8am and 8pm cartoons, it means no playing games on mum’s phone while he waits for dinner.
  2. No toilet facilities. This is an obvious one – if it ain’t porcelain it ain’t for us.
  3. Cleanliness – Where will he shower at 6pm?
  4. Sand – His feet will never be clean enough.
  5. Time – Granted, he loves the beach but he loves it for a certain amount of time at a certain hour.
  6. Seating – Nature doesn’t provide a comfy couch, bed, or chair and nothing less is acceptable.
  7. Food – you can’t make salmon pasta at a camp.
  8. Routine – Too much free time, too little to do. Even for one day, it would be so distressing for him.
  9. Socialising – He would go to the beach, maybe kick around a ball for a bit, then what?
  10. No aircon – He would be hot and uncomfortable the entire time.

He would repeat that he wants to go home over and over again. All the time. All the hours, all the minutes. Like me, that’s exactly what I would do.

That’s why you can never take us camping, unless its glam.

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Sandy Holiday

It’s rainy and miserable here, so in my head I’m in the Maldives.

It’s a beautiful group of islands in the Indian Ocean and we were lucky enough to visit. In December 2001 Christos was 3 and newly-diagnosed. We had 3 bags of clothes and a bag of Christo’s food. I was 11 and had no idea what Autism was, my cousins were also with us so I was too busy running around with them.

 I remember the buffets, the snorkelling, the swimming, the sunsets, the fishing, the giggling and feeding the fish on the pier with bread we stole from the restaurant. I remember one of the most amazing holidays we have ever had. Then, I try and look at it from another perspective; my parents’. They had just found out their son was on the spectrum. My mum had to pack his special diet food, his crisps, a pan, dishes, forks, spoons, a burner – I can’t even think about it without stressing. An entire bag of just the food he would eat on that 2 1/2 week holiday. They had to sit on opposite sides of him on the plane to comfort him and control him during take off and landing. They talked about how they would keep him busy, and get him to keep his seatbelt on. I like to think that even though I didn’t help them, I made it easy for them by staying out of the way.

Except for the smell of egg and lemon soup in our bungalow, the only other vivid memory I have of Christos is how much he loved to play with sand. There were little pots of water outside every bungalow to wash the sand off your feet, except ours was full of sand. Christo would sit for hours and just pour sand in the bowl of water. He’d use his little red shovel to pick it up and throw it in. Whether we were having tea or just hanging out around our tiny plastic Christmas tree Christos would be enjoying himself that way.

I wish i remembered more from those first couple of years, but that’s a testament to my parents and how well they managed to let me have a childhood while dealing with a diagnosis.
So whether it’s sandy water, black eyed beans or flat beans in a box, whipped cream or ‘Ow’ing’ Christos loves the repetition. That’s what he enjoys, the texture, the sound, the soothing effect of focusing on one things and avoid the sensory overload.

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Why fit in? c) Definition

Nothing is more common than the desire to be unique.

I see uniqueness as a gift we are given that we later give up. We are born unique; our eyes, our hair, our character are all our own. We grow up with qualities that only we have, thoughts that only we can vocalise or action. And then we grow up, and instead of being who we are, we become who we are expected to be. We conform. We stop laughing. We don’t stand up for people. We settle. We give up. We conceal our uniqueness with layers of just average.

What I envy about Autism is that not only do they get to be who they are supposed to be, but they get to do it without knowing it. They get to be themselves without constraints. They don’t care if people are looking. We do. They don’t care if people are talking about them. We do. My brother doesn’t have to define himself. I do. My brother gets to play, laugh, run, cry whenever he feels like it, I have to wait until it’s the right time.

 

Society will define me by my job, my background, my people. My character will be defined by one encounter – usually bad prevails. My happiness will be measured by my personal life, my career, my family. I get to write this blog, I study something I am passionate about, I get to try my best to attempt to redefine myself, or even find myself, but society doesn’t let me win. And the worst thing about it is that we care. Because we grow up thinking that our self-worth is measured by the way the world perceives us. A random definition of ‘normal’ crushes our uniqueness.
The secret to being unique is not trying; it is to stop taking the most recent definition of ‘normal’ and deliberately going against it. The secret to being unique is to be free, and if your mind doesn’t know how to be free you can never experience it. My brother doesn’t try to be unique, he just is. Because he laughs at what he finds funny when he finds it funny; because he runs around in a shop and shouts out to express happiness; because he yells when he’s mad. He doesn’t conceal himself; he has no inhibitions. Autism doesn’t define Christos. There are SO MANY words that describe different aspects of him but his spirit cannot be defined.

That’s freedom of mind and soul. Christos never stops pushing me, he shifts my beliefs, my perception everyday; he never stops throwing life lessons in my face like “How do you not get this!?”.

Why fit in when you were born to stand out?

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Happy Sunday!

Christos is at the Waterpark, where are you?

 
That smile means happy. It means he has everything he needs. It means that in that moment, on this day he was completely happy. How many times can you say you’ve felt this way? How many times have you let yourself go and were completely happy? 

Taking him to the Waterpark used to be very fearful, much like taking him to Disneyland. The biggest fear is that we will lose him, he will slip and fall, we’ll call out his name and he won’t respond, he’ll push someone by accident and they won’t understand. These fears were unnecessary. He just likes to be outside, in the water with my mum. He doesn’t run away. He doesn’t push. He doesn’t go on any rides and he doesn’t pee in the pool. He’s just a happy boy enjoying the Waterpark. 

*UPDATE* Mum just called and said that for the first time ever Christos asked to go on the slide.. And he did! He never stops growing. He never stops surprising us. Nothing stays still with Autism, we are always on our toes. 

Autism can be happy, it can smile, it can enjoy, it can joke. 

I hope you have a pretty and happy Sunday. 

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Post-Holiday Blues

11011996_10153467494105030_7208657849030404298_nI spent 2 whole weeks with Christo this summer (hope you liked the videos).

It;s strange because I used to look after Chris when we were in school. There was this gap between 1-4pm when our parents would be at work and I would finish school, wait for Christos to be dropped off and we had a routine. I completely forgot about those years mostly because Christos was a completely different person then.

He would be dropped off and it would be a struggle to get him to carry his own bag. In fact, when he changed schools and I had to go pick him up he once got so mad at me that he threw his bag in the middle of the road. Of course, I’m not going to make my brother go pick it up from the middle of the street, so i had to carry it; that’s my boy. He would come home, change out of his school clothes and we would make lunch. After lunch we would sit down to do homework, we would fight and then wait for mum to come home and do his homework with him. Some days were better than others, it was mostly when he had to read and write that he would get annoyed because I erased anything that wasn’t presentable and made him repeat the same work 15 times. As far as math was concerned, he would whizz through it and I would just trust him.

This holiday was different, I wasn’t rushing around trying to see everyone, and I wasn’t bothered about going out, I just wanted to see my family and my friends.

Christos would wake me up at 8am despite valiant efforts of my family trying to keep him quiet. He would go upstairs and make himself breakfast until I found the will to get up, then he would come down and ask me to wash the dishes. He watched cartoons until 11.30am when it was time for me to start making him lunch which he eats every day at 12. So we had pasta once, curry, garlic bread and ate an my nans a couple of days too. Then he asked me to wash the dishes. Then he asked me to do the laundry.

11760282_10153473371270030_5180231149516501789_nYou might have read that last year he asked to watch Cars on my laptop, well this year he asked to watch Cars 1 and 2 on my tiny laptop. So, he would watch that or play with his game boy for a couple of hours while his sister caught up on sleep, wrote, ironed or videoed him. At 5pm we would go to the beach. We had a little spot and he would go in and swim around on his own. That’s when it hit me – it doesn’t matter how many articles I write – my brother is happy going to the beach and swimming around on his own. He has his own friends, his own pastimes in his head. When i did approach him, he didn’t want me around, and if anyone wanted to play with him he wouldn’t want to. He was happy, on his own, doing something he loves.

At 6pm we would leave the beach and at 6.15pm he would shower, then he would wait for me to shower so that I would give him ice cream or make him toast with cheese. Then he’s ask me to wash the dishes. He ate and watched cartoons or play with his flatbeans until 8 when I would make him tea. Then he would ask me to wash the dishes. At 10pm, he would say goodnight to dad and go to bed. After that I would go see my friends, watch what I wanted on TV and not wash any dishes.

That was it – that’s what I did every day for my holiday and it was the best holiday I’ve had in years.

Awareness isn’t about seeing someone with Autism and running up to them to say ‘hello’. It’s not about surrounding them, it’s about understanding them. It’s about not staring at them and recognising the signs, knowing that every child is different. It’s about learning about Autism and supporting the families behind it.

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Autism Awareness is about acceptance and the space to live in whatever way makes them happy.

Awareness is about a smile.

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Πώς είναι να λατρεύεις κάποιον με αυτισμό – Ant1iwo

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http://www.ant1iwo.com/ant1life/anthropina/article/214479/pos-einai-na-latreueis-kapoion-me-autismo-i-dora-exomologeitai/

Αυτό το άρθρο σημαίνει πολλά για ‘μένα επειδή το μοιράστηκα στην γλώσσα μου, με τους συμπατριώτες μου, τους συμμαθητές μου – μόνο με το νησί μου. Ευχαριστούμε όλους εσάς που μας υποστηρίζετε και που αγαπάτε τον Χρίστο.

Ευχαριστώ για τα καλά σας λόγια, και την υποστήριξη που δίχνετε.

Ευχαριστώ Μιχάλη για την ευκαιρία. Ευχαριστώ Φωτεινή, Μαρία, Δέσποινα, στους δασκάλους του Ειδικού σχολείου Αποστόλου Βαρνάβα στο Λιοπέτρι, στο Ειδικό Σχολείο Θεοσκέπαστης στην Πάφο, στην Ομάδα Στήριξης Ατόμων με Αυτισμό Επαρχίας Αμμοχώστου. Επειδή αγαπάτε τον Χρίστο για χρόνια χωρίς ενδοιασμούς και χωρίς άρθρα.

Ευχαριστώ μάμμα, παπά που μας μεγαλώσατε με αγάπη και θάρρος – δεν θα είμασταν τίποτα χωρίς εσάς και τις θυσίες σας. Ευχαριστώ γιαγιά, παππού που έχετε πάντα υπομονή και κρέμα, θείε Πάμπο, θεία Ελένη και όλη μου την οικογένεια που μας στηρίζετε σε όλα και που προσέχετε τον Χρίστο. Ευχαριστώ όλους εσάς που ζείτε με τον Χρίστο καθημερινά και του φέρεστε σαν να είναι βασιλιάς – Άδωνη, Γεωργία, Αθηνά, Κωνσταντίνο, Νόρα η αγάπη σας για τον Χρίστο μου έδωσε παρηγοριά και κουράγιο για τους μήνες που είμαι μακριά του.

Ευχαριστώ Χρίστο, μου έδωσες νέα ζωή, ελπίδα, στόχους, φιλοδοξία. To σ’ αγαπώ δεν είναι ποτέ αρκετό. Forever and ever my superhero.

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Autism Matters Magazine Article – Autism West Midlands

Never in a million years would I have thought this blog would be featured in magazines and that people would be reading my Christo’s story.

Thank you Autism West Midlands for featuring Christo’s story in Autism Matters Magazine and making dreams come true.

Isn’t he pretty? 11846163_10153495834895030_1861719395_n
Blog post “Thinking about the things you don’t think about: a) The Sock Wars” 

You can subscribe to Autism West Midlands and receive the monthly magazine for free! “Autism Matters is AWM’s official magazine containing fantastic stories and experiences along with great information and advice.”