Extraordinary: Made up from “ex”, Latin prefix meaning ‘out of’ and “ordinary”, as in ‘usual’. Meaning “out of the ordinary”, “unusual”.

I’ve been hearing this word a lot lately.

Nothing is so common-place as to wish to be remarkable.

There’s this unavoidable thing called ‘death’ that makes everyone lose their minds and spend their lives running around trying to be different, trying to be the odd one out, wanting to be anything but conventional. For some its an incentive – it pushes them forward, gives them purpose. For others its a drive that consumes their everyday lives.

Then, on the same planet there are people that are already extraordinary who want to be ordinary; or rather we teach them to be ordinary. We try to make them usual while others are looking for ways to be unusual. We try to define them and put them in a box while everyone is trying to break out of the box.

It can be argued that teaching our kids social skills benefits them, it can also be argued that not conforming them to the imposed expectations of the society they live in benefits the society.

In a world where everyone is trying to be extraordinary, why do we imagesostracise those who are already extraordinary? Why do our kids get bullied, instead of embraced? Why do our kids have to endure birthdays without guests because they are ‘difficult’?

Being extraordinary isn’t about what you wear, what colour your hair is, or how many piercings you have. Being extraordinary is about your spirit. It’s about how you make other people feel. It’s about The impression you leave, how many opinions you can change, how much kindness you can show and how you get up and go on after your world falls apart. It’s about living life for you, it’s about being selfish in finding your happiness, because your happiness doesn’t exist unless the people around you are happy. Does that even make sense?

My brother is anything but ordinary, extraordinary doesn’t even cut it sometimes. He is a spirit that cannot be tamed. He touches people’s lives without even trying. Strangers in the street will catch a glimpse of him, will read about him and he will change them, he will have an impact on them. Children at his school will grow up learning about Autism, they will grow up knowing that it’s okay to be unusual, they will stand up for people on the spectrum because they have experienced a moment in time near it.

His Autism isn’t a hindrance, it’s a message. There’s a reason you cannot tame Autism and it is that it’s here to teach us a lesson. It’s here to show us that being ‘ordinary’ isn’t a choice, it’s an imposition.

There’s not enough room for everyone in the box – so get out, open your mind, learn about Autism, about dyspraxia, about epilepsy, Downs, Tourettes, Aspergers, Parkinsons; that will make you extraordinary.


Ashley’s lifeline

Ever wonder how somebody with Asperger syndrome experiences the world? It’s alright for me to sit here and lecture you about how I see my brother seeing the world but let’s face it – I don’t know. But Ashley – Ashley is an Aspie, who writes about being an Aspie. I met Ashley when I wrote “10 Confessions of an Autism Sister” and he told me that he was working on a book, he was moving house, travelling, writing and working with ABC on a short film.

Ashley – as he so eloquently puts it – is an Aspie, trapped in a box “trying to get out to throw the lifeline down to [others] who are in a similar situation“.

Video by Michael Bromage | Ashley Smith | Matt Curnock | Natalie Fernbach |

I’m an Aspie.

My senses are heightened, which makes life interesting.

In this video I’m giving you the opportunity to step into my shoes and take a walk with me down the street so you can experience what I see and hear.

My senses are always on and I can’t turn them off. I find it difficult to filter stimulation from the world and sometimes things can get crazy, but I have learned ways to manage difficult situations.

If you know someone with autism, I hope my video gives you an idea of what they could be going through on any particular day. To learn more about the life of an Aspie, you can read my stories on ABC Open. Search for: Sir Ashley Smith.


Back to Ignorance

In July this summer,  Eliese walked out of her home to find her car vandalised. Eliese has a 5-year-old son named Kyler and on the back of her car there is a sticker that reads – “Autistic child may not respond to verbal commands”.

There has been a lot of talk about putting up stickers in neighbourhoods, homes, cars, schools to make people aware that there are children/adults on the spectrum and to alert them – in case of an emergency – that they will have to handle the situation in a certain way. One end of the community says we shouldn’t discriminate against the kids and why should we put big yellow warning signs all around them. The other end says they are tired of having to deal with ignorance and just want to give in. The other end says that we should definitely be allowed to put up warning signs for the safety of the kids, in case guardians are not around.

And so on, and so on. 8336439_G

Nevertheless, back to Kyler. The sticker was surrounded by other handmade stickers that read “Spoiled Brat” and “Undisciplined” – one of them even said “Unetitled” which I’m guessing is either ‘unentitled’ misspelled or benightedness as to what the word actually means. Either way this person could use a dictionary for Christmas.

Eliese has said that Kyler was diagnosed with Autism and three additional disorders over the span of five years, leaving him with developmental problems, inadequate verbal skills and poor understanding. I wonder if the culprit knew – or even asked – before making these assumptions. In fact, I wonder how many people from her community knew – or even asked. Eliese searched for the culprit without any luck. She filed a police report with the police about the vandalism. She had only moved into the neighbourhood a month before.

It might seem shocking to you that people would say this about a kid but my family has been stared at, told to take control of Christos; one woman even took the initiative to yell at him on a plane and tell him to listen to us. Thanks stranger – we would have never thought of asking him to listen. Christo was even banned from a supermarket once because he was putting all the chocolates in order. Sure, the anger makes your ears melt of your face and you feel that you want to scream and that you’re drowning at the same time. How unfair, how utterly selfish of one human to think that it is okay to tell another human how to parent their child. And yet, autistic child or not I am sure if you’re a parent you’ve come across this before. Human nature is the worst and best thing about us.

Eliese probably had that sticker on her car because one day a crippling fear overwhelmed her when she heard about other children with Autism being mistreated (Preach & TeachSeventeen Candles). Because she thought of the possibility of getting into an accident and strangers or the police trying to help Kyler. The feeling that you are the only person who can deal with your kid is so lonely, it’s so desperate. Putting up that sticker was brave – it was a parent pre-empting the unpredictability of life. It was a message she had to put out there for Kyler’s safety, future, well-being for when words are not an option.

To Eliese: You’re both so much stronger than you realise; you will find a way to communicate one day.

To whoever did this: I hope you never get caught. I hope you get away with this for the rest of your life. I hope you never feel proud enough of this action to utter it to another person. I hope you carry this secret forever. I hope you see Eliese every day, the way she struggles, the way Kyler struggles; I hope you see them get stronger every single day. I hope that writing those words was your lowest point. I hope you never have to deal with Autism, because you’re not big enough to handle it. I hope that one day your ignorance will fade and will not be passed on to others. I hope your action shows the world how small your kind of thinking is. I hope it makes them read, and learn and smile when they see a kid throwing a tantrum in the middle of the road. I hope police officers are more careful with dealing children because of what you have done. I hope they talk about Autism training. I hope your community stands by Kyler throughout years to come and that they tell other people about Autism.


Kyler - taken from Google.

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.


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.


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.


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.


The Curious Incident of the Dog in the Night-Time

images (2)
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.