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Back to Love

Following on from: On the Radar – Spectrum Singles

Following on from: Following on from PS Love?

I was on the bus yesterday when a couple sat in front of me and another sat behind me – I was trapped. Almost immediately the couple behind me (Couple 1) started tickling each other and the girl sat in front of me was stroking her boyfriends hair (Couple 2). Let me make the point that I am not a fan of PDA, I am not a fan of eavesdropping, lets just say – I am not a fan of couples. But, one of these two couples moved me so much – they were inspiration.

Couple 1 was quite loud, so after the tickling ended they started talking about a talk show on TV and how they would do on it, then they talked about getting dinner which was a whole complicated thing which ended in less than a minute with one of them getting mad and the other trying to baby talk his way out of it. Yes, i said baby talk.

Couple 2 was very quiet, except for the hair stroking. His head was right in front of me, the windows were steamed up – it was all I could see. PDA makes me uncomfortable and I don’t understand why people are so into it. Holding hands – okay; a peck – okay; anything more and it gets a bit awkward. This couple didn’t start talking until the boy saw a truck and got really excited.love_puzzle

At this point Couple 1 were not speaking to each other – the girl was on her phone making alternative plans for dinner – the woo-ing had ended.

The boy from Couple 2 started talking. He was telling his girlfriend about his life-long dream to become a truck driver. Big trucks though – like the ones that carry other cars. The stroking continued all through his story. At this point, I’m looking at trucks thinking ‘Oh, I would have never thought of it that way’. Then, the girl turns to him, while stroking his hair, looks at him with stars in her eyes and says “[Name] you should never give up on that dream”. She said “You have to try and do everything you can to make that dream come true. You have to try even when you’re fed up of trying, even when everyone else tells you that you can’t do it, you have to make that dream come true. You’ll be good at it, I know you will, and I will help you make it real”.
Couple 1 was still not talking but there were intermittent sighs and shoves.

The boy replied to her by hugging her and telling her she is great, he kissed her hand and said “But I don’t know if they’ll let me’. To which she replied “[Name] you can’t let them tell you what you can and can’t do. They can’t stop you if you’re good just because we are Aspies”. And they giggled. And my jaw dropped. And the hair stroking never stopped.

Couple 1 got off the bus, still not talking. The boy tried to hold her hand, she pulled away and walked off without even so much as eye-contact.

The girl from Couple 2 gave the boy a kiss and they smiled at each other. Then they started talking about something that had happened years ago – they’d been together a while.

If you didn’t know and you had these two couples standing in front of you, interacting and you had to pick which one was the ‘normal’ one – which one would you pick? How much would you let spectrum stereotyping affect your judgement?

Learn about Autism – it’s not what it seems.

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Back to the Dentist

Christo went to the dentist on Saturday.

It seems so simple to say it, so ordinary. Yet, to come to the point where we can just say that he went to the dentist my parents and Christo went through some rough times. The kicking, the screaming, the dread. I didn’t have to deal with a lot of it but I know how difficult it was for them. Christo had bad teeth – “He would not sit still for any of it. I mean how could he with that light shining in his face, someone’s fingers in his mouth, the taste of gloves, the sound of the suction, the tools, the pain and us holding him down; again, this PLUS sensory sensitivity.” When he had to have surgery he was the one sedated, but I think we all could have used a tranquilliser that day. When he walked into my nans with blood stains on his t-shirt I blacked-out it a little.

Years of holding him down, years of tears and fighting, of worrying that he is going to stab himself or us or the dentist with one of those fearful tools, has led to this moment when I can just say he went to the dentist. It doesn’t sound as satisfying as it is. It doesn’t look as accomplished as it is. You can’t see how proud we are when we say it.

He went to the dentist.

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So, in the spirit of Marty McFly – and the Back to the Future 2015 date coming up – I thought of a few things I would go back and tell my family and me on trips to the dentist.

Look for someone who specialises in treating people on the spectrum, if you can’t find anyone near go around and explain the situation – you will get to check out the atmosphere, the space, the dentist before they go in.

Keep the drama on the low low. Be happy, smile a lot. Just because they cannot speak or express themselves doesn’t mean they don’t pick up certain words, tension or looks. I always thought of how easily Christos could pick up and copy your mood. The slightest change in my tone and he would be right there asking me why I’m annoyed or telling me to smile.

Draw their attention to you – keep them engaged. Don’t let them fade into a game or TV and then have them ‘wake up’ to the sound of a drill and a strangers fingers in their mouth. The transition will be much easier if they are already in an engaging, communicating mode.

Tell the doctor to dim the lights (in the reception area) or turn off background music when you have an appointment. This will help with sensory sensitivity. Christo didn’t need more noise, he can already hear what’s happening all around him.

Maybe this would have helped – practising. Having them sit back for 5 minutes while you pretend to poke around. Getting them used to the feel, being uncomfortable but knowing they have to sit through it instead of only experiencing the dentist once every 3-6 months.

Either way though, DeLorean or not,  whether we knew or not – Christo went to the dentist on Saturday.

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Lazy Cakes

426893_10150752440750030_157996903_nLazy Cake is mine and Christos’ favourite dessert.

My nan used to own a confectionery in Cyprus and I remember waiting for her to fill up the display so I could have one of the left overs. In Cypriot it’s called Doukissa (duchess), in Greek its called mosaiko (mosaic) in Italian its called Salame di Cioccolato (chocolate salami – bless the Italians). Its so easy to make, see here for the recipe, it doesn’t need to go into the oven and it is deeeeelicious.

I haven’t spoken to Chris in weeks and I’ve made this cake every week. I never missed having it before now and it had never crossed my mind to make it. I think I’ve replaced talking to him with eating his favourite cake – chocolate comfort doesn’t count as calories. I know he’s okay, I know he had a cold and got over it, I know he spent a few nights at his nans – I just never hear it from him.

537418_10151473549905030_1234036826_nAs well as stuffing my face with delicious cake, I have inadvertently surrounded myself with his jumpers, his pictures. My bedside  table now has more pictures than it has surface, and everyday they fall off, and everyday I put them back. In the years I have been away from Cyprus I have, apparently, programmed myself to not think of them but to just surround myself with their faces, their things. In the last week I have been tired a lot, drowning out silence however I can, keeping myself busy, I hadn’t written anything on the blog about Christo for weeks, I hadn’t seen him or heard him or spoken about him much and it took its toll; and I only realised this when I was talking to a friend about Christo. I talked about him and all I could think of was the way he asks for a piece of Doukissa when we are at the shop. He stands close to the fridge, puts one had on his side and points to the cake with the other, then he yells ‘Thodoga’ (that’s me) and smiles. I go over, he hugs me and kisses me and asks for one piece of Doukissa just this once, and I get it for him every time.

When a love is so big it can dim the sky, you don’t need words. I don’t need constant interaction or reassurance. I need one glimpse of him, one sound, one ‘Hello’ to remind me what the hell I’m doing so far away from everything I love.

By loving him I never forget who I am.

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The Curious Incident of the Dog in the Night-Time

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I just finished reading “The Curious Incident of the Dog in the Night-Time” by Mark Haddon. Although not expressly stated, it is thought that the book is narrated by a young boy with Asperger’s, despite the writer himself has said that: “Curious Incident is not a book about Asperger’s..”.

Christopher is a 15 year old boy who loves nature shows, his math formulas and his pet rat Toby (BLAAARGH get it off me). Readers may look at this book as an insight to the spectrum, as what the world looks like when you live with Aspergers. But, like the writer, I don’t think that’s what the book is for, I don’t think the writer intended his book to be the shining light on Aspergers. He, like all of us, is not an expert on the spectrum and he doesn’t claim to be.

In fact, I think this book is about the rest of the world. If we could simplify the world, Christopher would be the spectrum, his parents would be all parents of the spectrum, Siobhan (his teacher) would be the wider community, Ms Alexander (the neighbour) would be the kind stranger, Mrs Spears would be the conservative trying to understand, Mr Spears would be5d431-1gzjgna the ones that don’t want to understand.
This is not an Aspergers or Autism handbook. In fact the ‘traits’ presented by Christopher are very stereotypical. His behaviour was a tool used to facilitate the different viewpoint from which it is written.  When, or if, you read this book look at it as the beautiful story that it is; it’s just a boy living his day-to-day life, taking his A-levels, caring for his surroundings, daring the impossible, being scared of the familiar, and forgiveness.

This story captures the innocence of childhood that is lost in the world we live in today. The passion for being truthful and the risks we refuse to take for fear of being uncomfortable. Christopher – the community – can teach us so much. He is uncompromising in his pursuit for peace and enjoyment, unhindered by public opinion, fearless in speaking the truth just like our spectrum community; just like my Christo.

Our kids are an example to live by because they just live – they don’t live up to, live for, or live by. They just live.
When I was reading the book I connected to Christopher immediately. He says in the first couple of pages that this isn’t a funny story, yet I found myself giggling on the train because he reminded me of Christo, because there were so many little things that I can imagine Christo telling me if he could. It was like reading an inside joke. Every time Christopher rationalised, I laughed at myself for not seeing things so clearly before.

287891_gallery_53bff8c066a43_jpeg_fa_rszdThis book is about acceptance, strength, curiosity and most of all perspective. This character, who has been put in the Asperger box, will break free and defy all your preconceived notions. Christopher will make you laugh, care, fear. He will teach you about formulas and he will keep you on your feet.

I read this book on the train from Edinburgh to London (5hrs) and the only bad thing about it was that it ended.

 

If you’ve ever thought that something is impossible, that people cannot break barriers, habits, ideas, this book will prove you wrong.

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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?